Angela the Pink Tiger (Breast Cancer Survivor)

Guest Post by David Haas - Parenting When Cancer Hits

2011-07-16T14:24:00.001-05:00

I am posting a guest article by David Haas. ~Angela

Parenting When Cancer Hits

Parenting is a tough job, and it can be especially difficult when a parent is diagnosed with cancer. Just hearing words like Breast Cancer, Melanoma, and mesothelioma can strike fear in the hearts of dedicated parents. Many parents worst fear is developing a deadly disease is and they may not be around to see their children grow up, but parents actually have an advantage because their children support them and help them fight against the cancer. One thing these parents must remember is that children are remarkably resilient and they can help their parents get through the tough times, even if they are very young.

According to statistics compiled by the National Cancer Institute, just over half of all cancer patients survive for ten years after diagnosis. The numbers can be scary, but it is more likely than not that you will be around for years to come. Giving up is not healthy for you and it's important for your children to see you being positive so that they don't worry too much.

Parents who have cancer should try to explain their disease and treatment plan to their children in terms they will understand. They should also be available to answer their children's questions. It is helpful to take older children along to doctor appointments so that they can understand the cancer treatments and what their parent is going through. There are support groups for children who have a parent with cancer. Parents should ask around at their hospital or treatment facility to find out what types of classes or support groups are available to them and their children.

Having a support system is vital to your peace of mind when you're fighting cancer. A parent needs someone to care for their children when they are undergoing chemotherapy and other treatments. Children can be a great source of strength for their parents and a single hug from a child can make the whole day brighter. A parent who has cancer should spend as much time with their children as they possibly can. Children are a reminder of the good things in life as well as hope for the future. Just spending a few minutes with your children can be a great reminder of why you are going through treatments to fight this terrible disease.

By: David Haas

85 An Award

2011-03-29T22:57:00.008-05:00

Something wonderful happened in January 2011. My company held the annual sales conference and awards banquet for our division. All the outside sales staff and managers were there. I think all the inside sales staff and managers were there, too.

Last year I skipped out early to be home with my son. I knew that my husband would be facing whines like, "When is Mommy coming home?" and a stubborn little boy would try to stay awake until my return. I kind of hated to go, though, as I found that I enjoyed supporting my co-workers and clapping with the others as the respective winners took the stage and accepted their awards. At home I received confirmation that the bedtime routine had been just as heart wrenching for my husband as I had expected, so I felt like I had made the right choice last year even though it was awkward to leave early.

I had nothing appropriate to wear to the banquet this year, and little money to buy anything. I mentioned this to the right girlfriend at the right time and she loaned me a dress in the right size. It was blue, beaded (yay!), and beautiful on my less-than-perfect figure. With borrowed jewelry to accessorize perfectly and a few hours sunk into securing wayward beads before the big event, I felt glorious.

And nervous.

I was in a hotel with all these co-workers I know by name because I prepare the sales reports but I didn't know their faces. Nearly all of them were strangers to me, and I find it exhausting to make small talk with strangers. I also find it exhausting to talk with people in a noisy, crowded area, and the space outside the ballroom was super crowded and far too loud for my comfort. I threaded my way past the crowd to the spaces without people, and entertained myself by searching for the ladies room which was harder to find than it should have been.

Dinner was delicious, and I even recognized most of the people at my table. I had one embarrassing moment when the meringue of my dessert fell off my fork and into the ample cleavage of my dress. One napkin for coverage and a quick fishing expedition later and things were restored to normal. By then the awards ceremony was underway, the lights had dimmed, and most people's eyes were on the stage. Only one person behind our table softly chuckled so I think the meringue incident went mostly without notice. You can dress me up, but you can't take me out, I thought to myself, feeling like a clod. How I hate formal occasions! I never feel polished enough to pull them off. Instead I feel like a poser, treading water during the moments of the event until I can escape to more familiar places and people.

Still, I was glad to once again be supporting my co-workers as they accepted their various awards. I was glad to be staying for the entire awards show this year since our son is now old enough to let his father put him to bed without pining endlessly for me. And then the award for Operational Excellence in 2010 came up. As our General Manager/Division Vice President announced the winner, he started describing the work this person does.

me, jubliant, the night I won

A thrill ran through me as I realized he was describing my work. I stood as my name was called to receive this honor, and most of the ballroom stood with me. I floated on a dream as I walked the stage and received heartfelt congratulations from the regional directors. These were people I had sought to help over the last year by honing certain standard reports and adding features that made it easier to slice and dice information. I spent hours finding the right combination of colors and organization to make things intuitive and easy to read. I took on special projects and shared some of my skills by teaching classes. Out of all the people my company could have picked for this year's award, they selected me. What an incredible feeling! Yes I went above and beyond, but I'm used to companies taking that for granted and then pouting about not getting more from their people. This company decided to recognize my contributions and I smiled all the way home that evening.

I was the only winner who received a standing ovation, and I received congratulations over the next few days for that detail as much as for the award itself.

After living through cancer and heaps of other difficult events before and after that, it was really, really nice to have something go well for a change. Thank you, Amy, for loaning me the dress and jewelry so I could look beautiful that night.

Previous - 84 Overcoming

84 Overcoming

2011-02-23T23:05:00.004-06:00

It's 2011 and my 5-year anniversary is fast approaching on March 3rd. It's exciting to be close to hitting that mark. I know it's not a guarantee. I'll always be looking over my shoulder for the shadow of cancer, but most people who get a cancer recurrence get it within the first five years after diagnosis. If I make it to the five-year mark then I'm a whole lot less likely to have to go through this mess again.

Yee-haw!

Last year I had a unique opportunity to participate in the first ever joint venture between Texas Oncology and the Sustainable Food Center. It was a 6-week course on nutrition, one night a week. I learned all kinds of useful stuff, like how the "plate" model is beginning to replace the pyramid model for food category guidelines. If you have a quarter of your plate as a protein (meat, beans, etc.), a quarter as a healthy grain, and half the plate a variety of fruits and vegetables, then you will have a balanced meal. I also learned that if you eat a rainbow of colors among fruits and vegetables over a reasonable time then you will get all the vitamins and minerals your body needs. That's a whole lot easier for me to remember than how many portions of whatever I'm supposed to have per day.

We learned about knife skills to make chopping more efficient in the kitchen. Now I use the big butcher knife that came with our set that I have ignored for the last ten years, and I happily chop things up keeping my fingers curled as I push the veggie towards the knife while using the rocking motion to chop.

One of the more dramatic moments came when our fabulous teacher Katy demonstrated just how much sugar goes into a bottle of Coke. She took a container of sugar and a measuring spoon, and measured into an empty 16 oz bottle the amount of sugar the label said it contained. It was shocking and more than a bit offputting. Of course, that hasn't stopped me since then from consuming Dr. Pepper and Coke when I feel like it. I just feel more guilty when I do it.

As a result of the class I have discovered the joy of cooking with quinoa. I've started experimenting with combining foods I like and modifying recipes and creating new ones. What freedom! This class directly led to my feeling less afraid of cooking and more confident about trying new things. Last year saw me fall in love with fennel. I had already adapted to cooking with the bulb. After the class I started chopping up the stalk as well. It crunches like celery under my big knife. Ha ha haaaaa! (Fennel stalks are fun to chop.)

Another triumph over an old fear came about thanks to the cooking class.

Our classes were held at the Texas Oncology location at MoPac. I received my chemotherapy treatments at a different location in South Austin. (I have to wonder every time I capitalize the "S" in "South" if I'm doing the proper thing grammatically or just giving in to local custom.) The MoPac location was not a familiar cancer center to me.

I used to arrive to the class earlier than most of the others. One evening to kill time I decided to explore the hallway next to the conference room that we took over as our cooking room. I thought I recognized the style of the portraits on the wall from my favorite local photographer Bill Bastas. I even recognized a face or two in the group shots of women who probably represented breast cancer survivors.

I got to the end of the hall and found myself staring at the infusion room.

At my cancer center the infusion room was behind a door they always kept closed. In this building it was at the end of the hall with no door to block it off.

The lights were out. Every chair was empty, of course. The rolling IV carts held their sinister, cold metal hooks. A parade of painful images flashed through my mind of my chemotherapy treatments and all the traumatic emotions that accompanied that time in my life. I remembered crying during my first treatment because it felt like I didn't really belong in chemo and there must have been a mistake. I remembered how sick I felt each time afterwards. I remembered the fear of dying, and the disorientation of my body feeling strange in the shifting kaleidoscope of side effects. I remembered endless exhaustion between the treatments and my infant son, and how hard it was to care for him. It was as if that room embodied misery and intense suffering, and if I stood there long enough surely I would hear the ghosts of patients lost. All of these experiences took place in a matter of moments, then my heart lodged in my throat and I consciously controlled a strong desire to literally run away.

I backed away from the room with tears in my eyes and promptly found the conference room. The next few classes I pretended that room at the end of the hall didn't exist, and I would avoid even looking that direction. After all I had been through and healed from, it surprised me to have uncovered this deep loathing of anything bringing me so close to those old memories.

Then, near the end of the classes, after I had had a few a-ha moments with nutrition choices and meal planning, I arrived early as usual and decided it was time to face the infusion room.

I deliberately walked to it and stood in the same place looking across the rows of chairs and their empty IV hooks. I stood there and looked until the chairs became chairs. All the emotions bled out of my perceptions as the IV hooks became empty receptacles rather than instruments of torture. The chairs were just places to sit covered with stuff that's easy to clean.

A man came into the area with his rolling trash can and cleaning supplies and he began to work as I silently bid good-bye to those fears. My trauma had come and gone and I didn't need the pain anymore.

I returned to the conference room and waited for class with a smile.

Previous - 83 Wonders and Worries
Next - 85 An Award

83 Wonders & Worries

2010-09-12T14:17:00.075-05:00

that's me -- bottom row, third from the left

I volunteered in August 2010 for the ¡Qué Maravilla! fundraiser that benefits Wonders & Worries and worked at the event performing registration and checkout duties. (¡Qué Maravilla! is Spanish for "What a Wonder!") After three years of chairing the committee handling those tasks for the BCRC’s Champagne Brunch and Silent Auction event, it was nice to take the mental break and just follow someone else’s instructions.

I'm on the left, seated

My goal was to lend a hand, not to learn anything new, but the exposure to a successful silent auction with fewer items and fewer attendees became a great teacher of new ideas I ended up applying a month later. I’ve held firm in my resolve not to participate in the Champagne Brunch this year. I still need that mental break; but I allowed my friend Bill Bastas to talk me into handling registration and checkout for The Smile Never Fades gala last Thursday. There I worked at the registration tables almost the entire night so I didn’t observe the event in action. For ¡Qué Maravilla! I wandered around during the live auction. ¡Qué Maravilla! became an emotional experience.

I think the strategy was brilliant. They called child life specialist Kim Fryar to the lectern for a short speech before the live auction. She spoke about the services Wonders & Worries provides for families around Central Texas. She spoke of the number of clients they help each year and how their services are special. I adore Kim because she taught our Child/Parent Relationship (CPR) class that my husband and I attended last year and her gentle, accepting manner is perfect for supporting and guiding families through difficult times.

Kim spoke about Wonders & Worries. A client spoke about the service she had received. And then the live auction began. I stood at the back searching for cocktail napkins to wipe away the tears in my eyes. People raised their paddles and bid on fantastic items. The auctioneer worked the crowd and the items sold. I strongly suspected that many of the people attending the event were just as moved as I had been.

people pledging cash with their paddles

the silent auction area

back side of the silent auction area with beautiful old tree

Wonders & Worries is a non-profit organization in Austin, Texas that helps children and their families cope with the life-threatening illness or incurable disease of a parent or caregiver. They have wonderful, compassionate, trained child life specialist on staff and their services range from private sessions between a child and a counselor, to group sessions, to counselors traveling to schools, to classes conducted for parents. The first thing they helped us understand is what a "child life specialist" does.

When children are sick and in the hospital for cancer or other life threatening illnesses, a child life specialist generally comes to the hospital to help the child cope with the ramifications of the child's illness. To quote from their web site's "About" page:

Meredith Cooper, MS, CCLS, LPC and Melissa Hicks, MS, CCLS, LPC, RPT are two certified child life specialists who have attended to the psychosocial needs of children with cancer and blood disorders for several years. Both began work with pediatric oncology patients and children affected by other chronic illnesses. This work expanded to services with children who have a parent with a chronic illness, primarily with cancer. In 2001 Cooper and Hicks created the W&W program because they saw the need for more formalized psychosocial services for children and adolescents who have a parent diagnosed with a chronic or life-threatening illness. As professional Child Life Specialists (CLS) working in a hospital setting, they saw first hand the devastating effects a family member’s illness can have on the emotional well-being of the entire family.

I first attended an open house at Wonders & Worries in 2007 that invited the Pink Ribbon Cowgirls members. My cancer was diagnosed just before Kelric was born and my treatments all took place during his infancy, so Kelric wasn't directly affected in ways that he can remember. Do we tell our child that Mommy had cancer? we asked during that meeting in 2007. The answer was, "Yes. He needs to know that cancer is part of your family's collective history. If he learns about it unexpectedly somehow when he's older, it can be a traumatic revelation. It should just be a part of things that he feels comfortable discussing and asking questions about, and not a deep, dark secret that he uncovers one day by accident."

They suggested that we wait until our son was three before bringing him in. We wondered if he would really need any counseling after all, but after losing our dog Wendy in December 2008 (when he was two) and Kelric’s great grandfather the following April (just after he turned three), we saw profound effects on our little boy and decided it was time. I’ve even written about that in earlier blog entries. We took the Child/Parent Relationship class at Wonders & Worries in 2009.

Kim Fryer 2nd from left

Since then I’ve been able to talk with my young son about my having had cancer and about his great-grandfather having died from cancer. We’ve worked towards using the parenting and communication skills we learned in the class.

I’ve come to view Wonders & Worries as an amazing resource for families. It’s a powerful thing to know in a time of stress that you are not alone. Wonders & Worries helps parents communicate with their children at age appropriate levels, and they give the children tangible proof that those children are not alone, and their feelings – even strong negative feelings such as anger and fear and resentment – are not only normal but acceptable.

The value of this service goes to that place beyond words. It is priceless.

And yet…there are dollar values attached to things because we live in the real world.

Kim Fryer

During the live auction they stopped the auction part to conduct a cash donation portion. The auctioneer would announce an amount, and would solicit people to pledge to donate that amount in cash. Kim stood once again at the lectern stating succinctly what that amount would buy. Certain amounts would buy enough supplies for them to support one family for a year. Other amounts would pay for the food for an entire 8-week CPR class. Kim described the goals, and people contributed generously. I stood around in awe that in this economy there are still people who will contribute to causes like this. I hung back, deliberately trying to be inconspicuous and unnoticed, and felt enormously proud that I was giving my time to support this cause.

After the CPR class in 2009 I made a point of telling Kelric that his great grandfather's death was not his fault -- that nothing he said or did caused his grandfather to get sick or to die. My goal was to inoculate our egocentric preschooler from the typical young child reaction of thinking the world revolves around him so the death of a family member must somehow be his fault. Kelric didn't quite take that message to heart the way it was intended, however.

Shortly after that conversation our little boy brought up the subject at dinner one night. He started crying, telling us how Wendy died and he missed Wendy, and how his grandpa had died and he missed his grandpa. Then he added (while looking thorougly depressed), "It's all my fault." Oh! That broke our hearts into a thousand pieces! We quickly reassured Kelric that these losses were NOT his fault. We held him and comforted him and wondered if he believed us. It's so hard when a child asks "Why?" and the answer is "It's just one of those things that happens."

The important thing, however, was that our little boy was actually talking to us about these feelings. He was trying to work things out. He was trying to wrap his young mind about the enormity of death.

It was a painful process, trying to guide our child as we dealt with our own grief over these losses, but we kept at it and made healthy progress. Wonders & Worries helped us figure out how.

I think other groups like Wonders & Worries exist, but none are exactly like them – and that’s a shame because this group should exist everywhere. Wonders & Worries provides all of their services free of charge for their clients. They have wonderful flexibility on when and where their child life specialists work with the children. They actively try to reach out to underserved communities. Most of all they help innocent children cope with experiences so stressful, so traumatizing, and so painful that most people turn away because they don’t know what to say. Wonders & Worries makes an impossible situation bearable, and they do great works in helping to heal the human spirit.

Their goal is to someday have a Wonders & Worries in every major city (and small town) to support this large and vulnerable population of children. I hope this goal gets realized.

Previous - 82 My Time on Capitol Hill - April 2010

82 My Time on Capitol Hill - April 2010

2010-05-12T23:47:00.007-05:00

April 26, 2010

A week ago today I was in Washington, D.C. It was a fantastic experience!

It started last year when someone from the Pew Charitable Trusts noticed this blog and contacted me. They have joined with four other non-profit organizations to create an alliance that drafted legislation. They scheduled a lobbying campaign with volunteers like me, and earlier this year invited me to join them. Thrilled to be included, I accepted the invitation.

The bill was introduced to the House just three weeks ago. It's H.R. 4959. The link takes you to a web page that summarizes the bill and gives you an easy way to pull it up in a PDF file. Scroll to the bottom of the page to see the summary of what the bill is about.

The job of the volunteers was to schedule time with their state lawmakers to discuss the bill and why it's worth supporting. We told our stories about having had diseases that were cured or controlled by medication derived from nature. An employee of one of the non-profits was with us to directly address the contents of the bill. It felt like a job interview almost, with being very conscious of the passage of precious time and dressing formally and professionally. There was polite small talk and hand shaking upon greeting and leaving, and yet it was thrilling to walk through the halls of buildings where this country's laws are pondered, discussed, debated, trashed and supported by our elected officials.

I loved it that Pew agreed with my recommendation that my friend Amy Huff should come along. Like me, she was diagnosed with breast cancer in 2006. Like me, she was diagnosed while pregnant. Like me, Amy had Taxol as part of her chemotherapy treatments. Like me, her story makes for a compelling reason why we should protect those wild places around our planet that could lead to future discoveries of life-saving medications. We mothers want to stay alive and watch our children grow up!

Sidebar: Like me, Amy has earned an accounting degree, only Amy still enjoys work as an accountant and I hate doing pure accounting work. That's why I'm a data analyst instead. If you're in the Austin metropolitan area with a small business and you need an accountant for payroll, bookkeeping, taxes and other business needs, you can't go wrong with her. My friend is an incredible lady. The year she chaired Graphic, the main fundraiser for the Pink Ribbon Cowgirls, the event more than doubled what was collected the year before. She bakes cookies that are delivered to people in treatment, and involves her children in her philanthropic pursuits so that they learn the importance of helping others in need.

This is Amy Huff with David Hahn, a Hodgkin's lymphoma survivor from New York who is a pianist and a fellow volunteer at the event. Being coffee addicts, naturally we're having breakfast at Starbucks.

For me, it was a scary thing to e-mail the schedulers of my state's Senate and House representatives and ask for someone to meet with me. I thought about what I've learned after cancer, and how much stronger I've become. I thought about how much better I am at facing my fears so I wrote those inquiries and delighted in each response.

What is this bill about? There is a web site that eloquently describes the problems, why it matters, and what to do about it. Rather than try to rewrite all of that information in my blog I'm going to put a link to their home page.

What I find compelling is that half of the prescription drugs used in the United States and one quarter of all prescription medications worldwide were derived from some element of nature. At the current rate of extinction, we'll lose one important new future medication every two years. "More than 70 percent of cancer medications are based on natural sources," the web site tells us. Want a list? Here it is.

I got to speak members of the staff of my two state senators, Kay Bailey Hutchinson and John Cornyn. I felt amused and also proud to see a flag from the State of Texas on display at the end of the hallway where her office is located. While we waited for an audience, I acted like a silly tourist and insited on taking pictures and having pictures taken. Here is a picture of me in the waiting room of Kay Bailey Hutchinson's office.

When we met with the actual staffers, though, I was relaxed and to the point. Our person from the World Wildlife Federation explained that the bill proposes to task an existing Capitol Hill employee with coordinating the efforts of the six agencies that already touch upon and overlap one another with global conservation efforts. The bill actually asks for no funding at this time.

We spoke about how important plants and animals are to life-saving medication, how it is estimated that one major medication will be lost every two years if the current rate of environmental destruction continues, and how our personal experiences with Taxol lead us to be especially sympathetic with our desire to save our planet. What we didn't have time to mention was that 75% of the world's plant and animal diversity lies within the undeveloped countries who have no laws or weak enforcement of laws against things like rainforest destruction, illegal logging, coral reef destruction, over fishing, and so on. We also didn't have time to mention that this conservation effort would mean a continuation of things our country is already doing, such as training people in countries whose populations don't even average a high school education how to be good guardians of the land and how to live more in harmony with the planet. We teach them better agricultural practices and they stop burning down forests.

Our first night as a group, all the volunteers met with the people from Pew as well as representatives from the other non-profit groups for dinner. I sat next to a gentleman who has been in one of the groups, I forget which one, for the last ten years. I asked if he is optimistic or pessimistic about the changes he's seen. He said he feels pessimistic these days. His work has been in South America. Over the last ten years, most of the forty million acres his group has set out to protect from deforestation has remained protected, but over twice that amount in other areas has been destroyed. It grieved my heart to hear that.

At a D.C. Starbucks shop, conveniently located a mere two blocks away from the hotel, I noticed a sign that claimed Starbucks partners with Conservation International. I got to speak with a man who works for Conservation International and he backed up that claim, telling me that Starbucks has focused on finding and supporting coffee growers who use sustainable farming techniques. And he added that Disney has partnered withi Conservation International to help the cause, too, though their area of assistance was different.

This neat looking sculpture is an Alexander Calder piece named Mountains and Clouds. It is in the building where Senator John Cornyn's office is located. That's the same office of Tom Udall from New Mexico, the champion of the bill in the Senate.

To my delight, I got to meet Representative Lloyd Doggett, who was every bit as nice in person as he is rumored to be. I spoke with his staff member first, but had a bit of luck as Mr. Doggett was returning from another meeting and wanted to meet me in person before I left. Another staff member took our picture together with the Capitol in the background. They mailed me a print and I'm planning to frame it.

While the staffers and I were standing outside the building after Mr. Doggett had left, we were talking about cancer. The one woman mentioned that her mother is a breast cancer survivor. I was glad to hear that her mother is doing fine. She's glad to hear that I'm doing fine at four years and counting. I told her about Shannon Iezzi Watson, though, our Pink Ribbon Cowgirl member who was not doing fine. This conversation was on a Tuesday. Shannon passed away from breast cancer the Friday before, in the arms of her husband. She was only 29. We agreed that cancer is a beast of a disease and needs to be erradicated.

Update from May 2010: Lloyd Doggett is supporting the Global Conservation Act of 2010. Hooray!

My trip to D.C. wasn't all work and no play, however. Amy and I had plenty of time to hang around museums and the lovely Botanic Gardens. Here are some of the photos from that fun time.

Amy

a powderpuff tree

orchids

a really interesting cactus of some sort

It turns out that the Botanic Gardens have a yew tree and signage telling the story of the Pacific yew tree (from which Taxol is now synthetically derived).

Amy and I got to meet Dr. Susan Horwitz. She and her team figured out how to leverage Taxol into a cancer-killing drug. The picture is a little blurry (thanks, Amy) but that's me with Dr. Horwitz. It was an honor to meet her, and I told her so.

I felt amusement when I was in one of the buildings where our some members of the House of Representatives work and I saw fancy trashcans labeled for recycling. First I was impressed to see recycling in a federal building. Way to go green, U.S. government! Second, I was impressed at how pretty the trash cans were. The people around me were amused at how I scrambled to get my camera out to take a picture before the elevator arrived. I needn't have rushed. The elevator took a while. The building was pretty and stately, but it's old.

I figure if I'm going to post a picture of trashcans, I ought to follow it up with another picture of flowers.

So there was my first trip to Washington, D.C. By the time I came home I was extremely happy to be with my husband and son again. Kelric spent the week telling everyone at school that his mommy was in "Washington AC" saving the plants.

Thank you, Pew, for including me in your lobbying event. Thanks to my friend Margery who picked me up from the airport and played host to my tourist for the first day and a half that I was there. You are awesome. Thanks Amy for being such a fun person to hang around with in an unfamiliar city. Thanks Guy and Kelric for letting me go! :-)

Angela

Next - 83 Wonders and Worries
Previous - 81 A Deer, My Dear

81 A Deer, My Dear

2010-03-29T14:44:00.002-05:00

February 2010

Driving around Austin I have seen oppossum, skunks, armadillo, and even a fox on the side of the road or darting across it. I've seen red-tailed hawks in the sky, heard owls in the green belt and seen a heron in a South Austin pond. This February I saw a white-tailed deer.

In some places around Austin there are so many deer in the wooded areas next to neighborhoods that they will enter people's yards and nibble their flowers and decorative plants. That's why the Ladybird Johnson Wildflower Center and nurseries like The Natural Gardener will have "deer resistant" listed on labels of certain potted plants for sale. (Those are the plants you want, by the way. Plants missing the "deer resistant" label are prone to be stripped bare when food gets scarce in the green belt or woods if such places exist near your home.) The nibbling of yard plants is what leads my husband to refer to deer as "long-legged rats."

Still, they're beautiful animals to me.

I was driving along a divided road with a 35 mph speed limit when a deer darted in front of my car. That in itself isn't odd, but this was in a residential neighborhood rather than a two-lane country road so it really got my attention. I'll guess that the deer was a doe because it didn't have any antlers. Maybe it was fleeing coyotes. I've heard them in the green belt from time to time.

The deer got lucky. I was the only motorist in that part of the road at that moment, and I was able to slow down enough for it to pass in front of me unharmed. It ran up to the fence between two houses. I glanced at a confused-looking deer staring at the 6-foot tall wooden fence as I made the left turn.

The deer also turned left and ran through the various front yards, parallel to and slightly behind my car. It must have crossed the road behind me because I suddenly noticed it on my right and a couple of houses ahead of me. Once again the deer headed towards the 6-foot high wooden fence between two houses.

This time, however, the deer didn't stop at the fence. Instead it jumped up and over the fence without missing a beat.

"Whoa!" I said out loud in my car, thoroughly impressed. The power the deer used in its legs to make a jump like that awed me. Wow!

Suddenly, I felt extraordinarily grateful to be alive, and to have been in the right place at the right time to witness that little explosion where nature met neighborhood.

I also wondered how long the deer would stay in that homeowner's back yard and whether it would be there long enough for anyone living in the house to see it. Now that I think over the situation, I also wonder if the deer took time to nibble any back yard plants before it left.

It's now March 2010, a month that is about to slip into April. I reached my 4-year anniversary as a survivor on March 3rd. Hooray! Four years and counting is an exciting statistic for me. Later this week I'll get my annual mammogram again, and hopefully there will be nothing in that film to indicate I'm anything other than cancer free. Our son turned four this month and I must admit that I already like his attitude as a 4-year-old better than the 3-year-old days. It keeps getting better and better. (I'm glossing over all the rough moments, of course, because I have forgotten them in the wake of this morning's smiles and hugs before work and school.)

Next - 82 My Time on Capitol Hill - April 2010
Previous - 80 Reflections Upon 2009 - Less Squeamish

80 Reflections Upon 2009: Less Squeamish

2010-02-08T13:06:00.004-06:00

I discovered the text in italics in January from an unposted blog entry I had started in November 2008 but later rewrote before posting. It became Choices: Parts 1 and 2. I rushed the Part 2 entry because I had just learned that my co-worker Diana Knight had died from breast cancer and I wanted to write a tribute to what an awesome person she had been before too much time slipped past.

In 2009 a newly diagnosed woman asked me if my cancer experiences had permanently changed anything about my life. I admitted that it had. Honestly that topic is one that could fill a lengthy blog posting, but the part of the answer I write about today is that my touch with breast cancer left me less afraid of confronting things.

So here I am at the early part of 2010 with this entry from late 2008, and I think this part of the unfinished blog expresses more eloquently what I was trying to say. I know what kept me from publishing it initially. I wasn't sure that I was comfortable using the words "my" and "nipple" in something the world could see. I was embarrassed to think that a male co-worker might read it. Or my dad.

Now I don't really care. Nowadays I'm not afraid of a whole bunch of things that used to make me uncomfortable or squeamish.

Maybe that means I've reached another level along the path to maturity or wisdom. Maybe I'm more comfortable with past events that aren't so fresh.

In any case, I think the original bit below that I extracted from the 2008 blog entry is superior to the one I posted. I want to correct my error from 2009 by posting in 2010 what I wrote in 2008. How's THAT for putting a year in review, eh?

PARKING
When I returned to work in May 2006 from maternity/cancer leave, I felt disoriented. I had been on leave for nine weeks and a lot had changed.

Some of the staff had turned over and new faces replaced the old. Familiar people had moved to different desks. My furniture had been pushed back a foot or so within my office and all of the books I had left on the credenza – some of them personal – had been scattered throughout the department. I was no longer a manager of seven people, and my body couldn’t tolerate a 40-hour work week.

I had gone on leave as a pregnant cancer patient, feeling much more like a victim of circumstance than like a survivor. I returned, proud of my new status of Mommy, yet still adjusting to the changing needs of my baby and to the changing needs of my body. I had made it halfway through chemo.

Cancer had taken a lot away from me at that point. It had taken away my choice to go into labor when my body was ready, and replaced it with a scheduled inducement of labor. It had taken away working breasts that could feed my baby; and replaced them with a tender lumpectomy scar, bottles of formula, chemotherapy-poisoned milk I couldn’t pass on, and one nipple that bled if I didn’t sleep in a bra. It had also taken away the natural situation in which I could put the needs of my child first, and replaced it with a priority to put my needs first. Oh, that was hard! Cancer seemed like a beast, and fighting it felt like succumbing to a heartless machine that stripped away my humanity.

I needed something over which I could have control.

I found it in the parking lot. I broke the old habit of always parking in the back. I began parking in the front of the building, or at one side or the other. I followed whatever mood suited me that day.

Oddly enough, this was freedom to me.

I shrugged off the old constraints I had given myself about my “favorite” area to park the car, and I took on the attitude that my habits didn’t have to define me.

This was a small way to express that sense of personal power, but it mattered, and emotionally it helped me heal.

-------------------------------
That part at the end was what inspired me to cut it from the original entry and paste it into today's entry. The taking back of some small part of personal power helped me to heal. Once in a while I get e-mails from people who've let me know that my blog helped them. Those messages make me feel really good, and let me know that recording such a personal journey through a disease that impacts a woman's image of her sexuality was and still is worth it.

I still park in random parking lot spots at my place of employment. It's a different parking lot at a different job, but I like how it feels to not be mad that somebody else "took my space" and I like how it feels to make a new choice each day. It's also a step in the direction of being less rigid.

I'm a high strung, Type A kind of person, but life has taught me to appreciate what I already have even as I yearn to attain the goals I've set. I can roll with the punches and find something positive about most any parking space in the garage, even if I have to drive several levels up. The optimist in me finds something positive in just about any situation I'm in. If I didn't, I'd cry.

So here's to being less squeamish about saying what needs to be said.

I'm still not going to give details about how cancer treatments affected my sex life, though that is a topic in general that really needs more attention than it gets. I really sympathize with the women who have had mastectomies and lost all nerve endings in their breasts. I especially sympathize with the women who are dating and have to add "doesn't care that my breasts aren't my own" to the list of qualities they look for in a mate. But these are the things you face when a medical event has altered your body. It is what it is and it doesn't have to be the end of the world or the end of your sexual satisfaction. Focus on the things you can control and let the importance of the things you can't control dwindle to something trivial.

Anytime I'm faced with a situation that causes me continual stress, I start looking for the pieces that I can change. If I don't like my job then what new projects can I take on, what new skills can I learn, or what new employer should I try to work for? If I have a "friendship" that feels more like a battlefield than a friendship, then what do I lose by letting it go? Or what can I do to make it better? If I feel like all my time goes towards others so that I never get the time I need to relax and recharge, then what can I shift so that I take back enough time to feel balanced again? This isn't an exercise I complete once and then forget about. Life doesn't stand still. New challenges come up and old situations require new evaluations.

So what did I learn for my life after cancer? I learned to stop running from the evaluation exercises. Life is too short to hide from the things that make you uncomfortable. It's the same advice you've heard a million times from a million other sources, but it's a universal truth because it's true.

Where will I park tomorrow? I have no idea. That choice gives me power, and I'm not giving it up.

Next - 81 A Deer, My Dear
Previous - 79 Reflections Upon 2009: Vitamin D

79 Reflections Upon 2009 - Vitamin D

2010-01-12T13:27:00.003-06:00

I'm a skeptic when it comes to most things involving cancer prevention or cancer cures. If it isn't backed by double blind scientific trials with a sufficiently large pool of participants, then I will take the conclusions with a grain of salt only.

In 2009 a study came out that pointed out high levels of Vitamin D as having something to do with better odds of surviving breast cancer. I appreciated the way that Dr. Susan Love described the study and its conclusions. The study points out, in a nutshell, that people with higher levels of Vitamin D in their bodies seem to be less likely to develop breast cancer and those who get breast cancer anyway are more likely to survive the disease. Dr. Love challenges that perhaps these people had higher levels of Vitamin D because they spend more time outside and maybe they are outside more because they are exercising more, so we can't conclusively claim that elevated Vitamin D levels alone are absolutely tied to cancer prevention. Maybe Vitamin D helps. Maybe it doesn't.

Then two things happened for me around the same time.

Thing one was that I went to my regular annual checkup with my oncologist. This man keeps up to date with all the breaking news concerning cancer. He is also not likely to grasp at the latest thing without significant evidence that it is meaningful, valid and relevant. When I showed up for the routine lab work that always comes before checkups, the nurse informed me that my doctor now tests all breast cancer patients for Vitamin D levels.

It turned out that my level was low. (My checkup went fine, by the way. I'm still living with NED - No Evidence of Disease.) I got a prescription for an obscene amount of Vitamin D - 20,000 International Units (IU) a week for six weeks - and afterwards followed instructions to take an over-the-counter 1,000 IU per day supplement. If my oncologist believes that bumping up my Vitamin D level will help prevent recurrence, then I'll stand up and take notice.

The second of the two things was an article published by Cure Today. Here is the online version of "The Vitamin D Difference."

This article fascinated me because it drew my attention to the possibility of low Vitamin D levels being a factor in why breast cancer is more deadly to people with dark skin. (I would say "African Americans" but really the issue transcends Americans altogether.)

Here is a powerful quote from the second page of the article:

“A question you really have to ask yourself is, ‘How are African-Americans like Norwegians?’ ” says cancer biologist and epidemiologist Gary Schwartz, PhD, because they have almost the same rate of death from one of the most common cancers in the world.

Schwartz, a researcher at Wake Forest University School of Medicine, says, “They don’t look a lot alike, and they’re not genetically alike,” but it turns out that members of both groups tend to have low levels of vitamin D in their blood.

Oh!

So Norwegians have low levels of Vitamin D because they don't get a lot of sunlight due to their location on the planet. And dark skinned people have low levels of Vitamin D because the pigmentation of their skin decreases the amount of Vitamin D their bodies create when exposed to sunlight.

Here are two more paragraphs from page four of the same article:

Recommendations for adequate vitamin D supplements depend somewhat on a person's lifestyle, skin color, age, and overall health. A light-skinned lifeguard in a bathing suit on a sunny summer day probably synthesizes as much as 20,000 or 30,000 units of vitamin D, says Giovannucci. People with very dark skin probably need about 10 times as much sun exposure to synthesize the same amount of vitamin D as people with very light skin—or may need more from supplements if they aren't getting that much sun exposure.

Obese people may need more vitamin D (because the vitamin is sequestered in fat), and so do people who can’t readily absorb nutrients from their gut into their bloodstream. Also, people need more supplementary vitamin D as they age, because their skin and kidneys gradually become less efficient at synthesizing vitamin D and converting it into its active form.

That last paragraph, in my opinion, hypothesizes that obese people tend to be more susceptible to getting cancer because their bodies store Vitamin D in their fat. Older people are at a higher risk for getting cancer because their bodies have gradually changed to where they produce less Vitamin D from the same amount of sunlight. That could explain why obesity and age are risk factors for getting breast cancer.

The article concludes by stating that it is difficult to get enough Vitamin D from diet alone, and that supplements may be necessary. My oncologist feels that supplements are necessary for me, and I'm in favor of doing what I can to reduce my risk of recurrence.

So, starting in 2009, I'm taking Vitamin D supplements daily.

Next - 80 Reflections Upon 2009 - Less Squeamish
Previous - 78 Reflections Upon 2009 - Exercise, Hair and Friends

78 Reflections Upon 2009 - Exercise, Hair and Friends

2010-01-02T17:48:00.011-06:00

EXERCISE
When I switched jobs in 2009 from Company A to Company B, I went from a 9-story building to a 4-story building. My job at Company A had me attending meetings on other floors regularly, so it was common for me to walk up and down three stories of stairs at a time several times a day or week. By the end of my time there I was walking down all nine stories at the end of the day and beginning to walk up as many stories as I could in the mornings before I got too tired. It was great!

But Company B has a locked door on the third floor so I can't walk up the stairs in the morning. If I do I can't exit onto the floor where I work.

Company B has a parking garage, though, and on the mornings when I arrive 15-20 minutes early and don't have work that needs an early start, I will spend the first part of the day walking around the parking garage. We have security guards who patrol the garage regularly, and it's on a side of town where I feel safe, so I'm aware of my surroundings but not especially nervous when I walk in the parking garage.

As a result of my early morning walks, I'm beginning to learn that gloves on a cold day are a smart thing to wear, as are hats. I have debated with myself whether carrying a peppermint mocha from Starbucks while walking counts as exercise or not, and decided the second time I did it that it does.

The parking garage and office building have a pleasant view of downtown Austin, with lots of trees between us and the buildings downtown. The other morning the city was enshrouded in fog from Town Lake (now called Ladybird Lake) to the north side of town. The south side where I was, however, had clear skies. So I walked along the top level of the parking garage and saw this thick, beautiful mist caressing the city. It made me feel good to be alive.

That gratitude about life never leaves me. Nor does the gratitude over having eyebrows, eye lashes, and hair.

HAIR
In 2009 I had my hair cut short again. In 2007 and 2008 short hair reminded me of the strength I gained after surviving breast cancer. I kept it short then to honor that ferocity and determination to live. In 2008/2009 I felt like I had reached a certain level of healing from the trauma that accompanied cancer and its aftermath. I grew my hair back to its layers and shoulder length, which felt long to me. Having long hair once again was symbolic to me as I no longer needed it short to prove to the world that I was strong.

Then in the fall of 2009 I got tired of the long hair and wanted it short again. The length of hair lost all connection with cancer. I just liked the ease of care and the perception I'd developed of short hair looking professional. It was another step along the path of healing, actually, that I could view my hair length as something entirely wrapped up in personal preference and with no lingering connections to anything cancer-related.

After going far too long between cuts, I just had it trimmed yesterday back to the short and sassy style. Ah, freedom!

FRIENDS
In 2009 I made a point to reconnect with some of my friends I don't ordinarily see. Life is too short to have regrets over never seeing people who are important to you, so I've been reaching out as schedules allow, and initiating lunches and get togethers. A certain richness of life has returned as I've been a part of creating new happy memories with people I care about. It's fun. It's emotionally healthy. It's a practice I plan on continuing in 2010.

Next - 79 Reflections Upon 2009 - Vitamin D
Previous - 77 Reflections Upon 2009 - Locked Out

77 Reflections Upon 2009 - Locked Out

2010-01-02T17:18:00.006-06:00

We had a surreal event one evening during the "warm but non-unbearably hot" part of the year. (I live in Texas. We don't have a change of seasons so much as we have the "hot" and "not so hot" times of the year.)

Kelric surprised us one evening by asking to go on a walk after dinner. He's three, but once in a while still enjoys a ride in the stroller. This was one of those evenings, and since I'm always interested in increasing my exercise level in pleasant ways and since I get to walk a lot less since my son was born, I was all for the after-dinner walk.

We ended our walk at the neighborhood playground. We arrived just in time for Kelric to play with T., a little boy about the same age who lives in our neighborhood and whose parents with whom we've always enjoyed talking. The big boys and little boys focused on playing with T.'s basketball, and we moms chatted off to the side.

When we finally parted ways and went home, our next door neighbors were sitting outside on their front porch. Before we could attempt to enter our home they informed us that the power was out. Nobody knew why, but there was no electricity on our side of the street. Houses across the street had power, but our side was out and so was part of another street we could see.

The power outage was a big problem for our family because we had brought only our garage door opener with us for household access. With the power turned off, we could not open our own garage door.

We could have called my mom and asked her to come over and bring a house key, but we had recently installed bolts high up on each exterior door. All of the bolts were engaged, so an unlocked door wouldn't help with both front door and back door bolts in place. We were stuck!

We couldn't drive anywhere because we didn't have any keys for the vehicles with us. We didn't even have a cell phone with us.

We were still puzzling about how to spend our evening when the other family walked up from the playground/park and started to walk home. I told them about our situation and they invited us to their house to hang out while we waited.

That was exciting, as these were people we wanted to get to know better but didn't want to seem too pushy about becoming better friends. They live on the street behind us, and as we approached their home we saw that the power was out on their street, too, but only to their house. The house on the left of their house had power. The house on the right did not. So weird! And funny, in a strange way.

The mom made tea, and the little boys played together as we all clustered on the front porch enjoying tea and time together. After a little while the power came back on, and we visited for a bit more before heading home to a late bedtime for Kelric.

I loved how an inconvenience like a power outage led to a pleasant evening sharing interesting conversation with nice people while our children played.

That was Lockout #1 for 2009.

Lockout #2 came when I misplaced my desk key at work.

It was the end of the work day. I was ready to go home and I had my purse locked in the overhead bin of my cubicle. I searched and searched for the little key that should have been in my pocket, but I could not find it anywhere. It wasn't in my jacket pocket. It wasn't on the floor. Most people had already gone home for the day.

I went to my boss who, fortunately, was working late.

"I'm ready to go home but my purse is locked in my desk," I explained. "My car keys are in my purse." He looked at me. "I can't go home."

My boss paused a beat and then smiled. "Sweet!" he said. "You have to stay at work forever!"

He was teasing and I was able to laugh at myself. Then he set about finding the key to the closet that held the keybox with spare keys to all the desks and filing cabinets. By the time he located the right key and walked to my cube, a co-worker had already popped the lock with a crowbar. Airtight security, those desks... No wonder my boss instructed me to take my company laptop home each night rather than leaving it in the office!

So I got my keys, thanked both men, and went home.

Sometime later when I laundered those pants, the key appeared in the laundry basket. How it had remained hidden while I dug through my pants pockets for a dozen times that day, I don't know.

Lockout #3 happened a short time later to my husband. His truck keys fell out of his pocket or off of his beltloop while at the grocery store. He called me at work for a ride home. He had already purchased the groceries before the noticed that his keys were gone, so he had cold stuff in the bag and needed to get home.

That incident wasn't quite so funny, but it wasn't too traumatic. I had the second set of truck keys in my purse so I left work early, met him at the grocery store, and gave him my set of keys. He left word with the service desk just in case anybody found the keys and turned them in. Amazingly enough, somebody did! We got a message the next day that the keys had been found. Guy picked up the original set of keys and things went back to normal.

I returned the lost-and-found kindness later in the year when I found a woman's ring in the grocery store's parking lot. It looked well worn which I took to mean it was much loved. I took the extra time to turn in the ring at the service desk. I have no idea what happened to the ring after I did that, but it felt good to give the ring's owner a chance at getting it back again.

And I found a purse left behind at a fast food restaurant in 2009. I gave it to the staff in case the owner came back for it.

I think back to how wonderful it felt to have our truck keys returned. With all the rotten things you read about in the papers and online articles, it's nice to know that kindness still exists and gets practiced in our society.

Next - 78 Reflections Upon 2009 - Exercise, Hair and Friends
Previous - 76 Reflections Upon 2009 - Employment

76 Reflections Upon 2009 - Employment

2009-12-30T12:38:00.012-06:00

It's the beginning of 2010 and naturally I find myself reflecting upon 2009. All kind of things changed and happened in 2009, and some of them were funny or cool.

One of the things that changed in 2009 was my employment.

When 2009 dawned, my full time job was to look for a job. I spent hours each day reading online want ads and company website job descriptions. I signed up with placement agencies. I updated my profiles on the online job search sites and weeded through the valid job descriptions from real recruiters vs. the "start your own business" and "work in insurance" junk mail from the would-be scammers.

By the end of January I was in the delightful position of having to weigh two offers that came in at the same time. Making the decision was agony. I played hardball when I negotiated my rate and compensation package, and that was a new tactic for me because the past had always seen me accept whatever I was handed. I was also amazed that I was unemployed for only a month and a half before I was back to work again.

I started my new job at Company A (a pseudonym, of course) and spent the first few days in culture shock. From late January to mid-May I worked at Company A, and hated most of the time I spent there.

It was weird to work with people that I liked, doing work that I was good at, and feeling miserable about what I was doing 40 hours or more a week. I got praised for what I produced, but the learning curve was steeper than I had anticipated and the more I learned the less I wanted to know about that company's business. I was a Systems Analyst for a company that wrote specialized software, and my job was to take the requirements given to me by the Business Analysts and write up detailed software specs that the developers could convert into code. It should have been fun, but it wasn't.

I wilted in the formalized atmosphere of extreme specialization. Nothing much in my job supported creativity. I had little room to innovate. Professionally I was delighted to learn new skills, yet at the same time I was starving for more fulfilling work.

In mid-May my dream job as a Data Analyst for Company B started and I stepped into work heaven.

I happened to begin my work at Company B just as they launched a class for the inside sales reps. I sat in as time allowed and learned about how different software applications worked within and interconnected for this company. I watched a series of videos from professional development coach Marcus Buckingham.

The schtick of Marcus Buckingham is to encourage people to identify their strengths, and then seek work that utilizes those strengths. I learned that when you do work that uses your strengths, then you feel invigorated from the work even if you are mentally or physically exhausted by the most recent task. When you perform work among your strengths, Mr. Buckingham says, then you look forward to your tasks and you take pleasure in your accomplishments. By contrast, when you perform work with your weaknesses, you may be really good at what you're doing but doing it drains you. You begin to dread doing more of it.

I sat in the class of new hirees and listened to these theories, and thought about how I had dreaded going to work each day at Company A. I received constant feedback that I was doing a good job and was learning the ropes much faster than the typical new Systems Analyst, and yet I disliked every new project added to my plate and my only real pleasure came in sharing tips and tricks with my co-workers about improving their productivity in the Microsoft Office applications.

Marcus Buckingham theorizes that your strengths show up in childhood, and as you age you only get stronger in those areas. The class trainer challenged us to think of an event from our childhoods that pinpointed a current strength. I thought back to the time when I drew up elaborate, written designs to eliminate a gopher that had been terrorizing our yard. I don't even remember doing this. I must have been about 5. My mom takes delight in telling me and anyone else who will listen about the event.

In modern work terms, I was designing a solution to a problem. I was taking information about a problem, and using my creativity to solve the problem. That is exactly what I love to do today. That is what I get to do at Company B.

So my first few weeks at Company B exposed me to a professional development coach whose recorded lectures affirmed that I was completely right to change jobs and embrace what I thought would be a dream come true.

I have especially enjoyed coming to work for the last month or so. I've now been here long enough to understand the basics of how the systems work, and I've been spending my time creating new reports and improving old ones. I like it that the managers have a clear idea of what information they need to see and how it should look, and I just need to make it happen. It seems like the more I learn about individual reporting preferences, the more good ideas I collect that can be applied to other situations.

I've also learned not to hold back with tooting my own horn. I understand that a common mistake that women make in the workplace is that they think the people around them will notice and remember their accomplishments without them having to bring those accomplishments to anyone's attention. Apparently women are wrong about this perspective, especially when they work mostly with men.

My husband assures me that men have no hesistation with telling everyone about what a great job they did on something. It sounds like part of the reason that women don't rise as high in the positions of authority within a company is because women are more relucatant to act like their male counterparts with telling everyone what a good job they've done.

While I don't hang signs on my door telling everyone that I'm awesome, I do make a habit of forwarding to my boss e-mails of praise that my co-workers send after I've helped them. Anytime I've improved upon an existing process or created something new, I make sure that my boss gets a copy so that he can see the progression of my work.

So in 2009 I began working in a job that utilizes my strengths, provides outlets for creativity, and provides a supportive environment for these changes and personal growth. Sweet!

In order to keep the blog entry sizes down to something less than "novelette" I plan to write a series of posts rather than one gargantuan post. Next up...getting locked out.

Next - 77 Reflections Upon 2009 - Locked Out
Previous - 75 The Speech

75 The Speech

2009-09-29T00:42:00.006-05:00

I called a friend today and the first thing she asked was, “How did your speech go?”

The speech went well. The event went well. We had a few snags, like two of the four credit card machines not working, but overall people pulled together and worked out the problems and things were fine. I was exhausted about halfway through it and just had to push through and keep going.

Doing a major event like this a week and a half after a tonsillectomy was undeniably a challenge. I owe my neighbor Michelle big time for babysitting Kelric at the last minute when the friend who had been lined up got the flu. Thanks, too, to Alexis and Jason for being willing to watch Kelric if Michelle couldn't.

Since most people, including my mother, did not get to hear the speech, I’m going to post it to the blog.

But first I want to extend a heartfelt THANK YOU to all the wonderful volunteers who worked so hard to make it all happen. I could plan and organize to perfection, but without you it would mean nothing. Many people commented to the BCRC staff about how well you worked as a team, and the BCRC says many guests declared this the best Champagne Brunch and silent auction ever. Yeah team! Thank you for all your hard work! The staff and volunteers collected around 330 items for the silent auction which was more than we had last year and a surprise in this economy. We nearly sold out ticket-wise. I don’t know the exact numbers but there were over 650 people on the list of attendees. We won’t know how much money we made until later, but I know that all but three silent auction items sold, which is great compared to last year. Rue McClanahan entertained and delighted the guests. I was only able to hear a small portion of her talk as I snuck in a late lunch at the table in the back.

This picture taken at the event shows off my new haircut. I’m at the “Command Center” where I had the computers and printers set up. The ballroom doors are behind me and I'm trying not to look as stressed as I feel.

It was an honor to be a speaker. I’m glad this is part of my collection of happy memories. (In other words, it was fun but I'm glad it's over. Time to take a break!)

MY 5-MINUTE SPEECH AT THE 2009 CHAMPAGNE BRUNCH AND SILENT AUCTION BENEFITTING THE BREAST CANCER RESOURCE CENTER:

When I was diagnosed with breast cancer on March 3rd of 2006, it came as a surprise. We had spent over a month thinking the lump was caused by an infection; an abscess; something benign.

Fortunately, I had surgery to remove the “abscess,” and while I was under sedation my breast surgeon recognized it was cancer. The hospital lab confirmed it, and my simple surgery turned into a surprise lumpectomy.

I was 34 years old with Stage II breast cancer, and 36 weeks pregnant.

On the one hand, I got to skip that agonizing waiting period between a biopsy and a diagnosis. On the other hand, I got hit by the medical equivalent of a freight truck. And 10 days later I gave birth.

One of the difficult parts about dealing with a traumatic event is how it isolates you. Your loved ones all care and support you, but unless they’ve lived it too they can only imagine what you’re going through.

I cried the most in the shower, where nobody was watching me. Things got better, but it took a while.

After my son was born, the hospital social worker dropped off brochures about parenting and babies. One brochure was for the BCRC.

I didn’t call right away, but when I did call I spoke with Ray Anne Evans. She suggested that I might enjoy a new group just forming under the BCRC’s umbrella – the Pink Ribbon Cowgirls, a social network for younger breast cancer survivors.

I attended their first luncheon in April 2006 and found kindred spirits. They had been there, done that, and they knew what I was going through. I hadn’t realized how alone I felt until suddenly I wasn’t alone. I wasn’t even the only woman in town to have been diagnosed while pregnant!

I have made lifelong friends from that group and have become part of the support network that comforts others. The BCRC honored me by adopting my cancer poetry for use with their support groups.

I finished chemo, finished radiation, and in 2006 attended my first Champagne Brunch.

The next year they entrusted me with the Brunch committee for registration and checkouts. The timing was perfect. I was miserable at my day job. My boss treated me like a replaceable cog. I doubted if my skills would fit into a better job at any other company.

My stomach churned at the thought of asking people to donate items or money, but I had a grand time analyzing checkout processes and building a system to create invoices! My ideas resulted in Brunch checkout improvements, which in turn gave me the confidence I needed to seek another job. It’s funny how one thing connects to another.

The Journal of Clinical Oncology published results of the Nurses’ Health Study in March 2006. The study found that “women with social ties who had 11 or more friends, relatives, or neighbors had a significantly lower risk of mortality than those with zero to four ties.” Hmmm… More connections… Fewer deaths…

The BCRC connects people to education and resources. It connects people to each other. That’s important work, and I’m glad you’ve given some part of yourselves to support that cause today.

Three people connected to me have died from breast cancer this year: my former co-worker Diana Knight in January; my grandfather John Behne in April, who believed the doctor who told him that men couldn’t get breast cancer; and in June our very first Pink Ribbon Cowgirl, Becky Davis.

Cowgirls gathered the Saturday after Becky’s passing, and we shared memories of our lost sister, stories from our breast cancer journeys, and support for one another.

From an X-Files perspective, “We are not alone” sounds ominous. From the perspective of cancer survivorship, “We are not alone” sounds like the comfort of a warm hug when you’re cold and scared. “We are not alone” is the strength of many hands holding you up, chasing away isolation.

This year so far, two of my friends and one of my professional contacts have been diagnosed with breast cancer. They all found the BCRC. (Those brochures are getting around!)

These women are not alone. With one of eight women diagnosed with breast cancer at some point in her lifetime and over 212,000 Americans diagnosed with breast cancer each year, they have a lot of company.

I’m so glad the BCRC still lets me chair the committee of registration and checkouts. That number stuff is fun for me. Holding onto the confidence from the 2007 Brunch, I got a dream job this year as a data analyst. My marriage survived the financial and emotional strain of cancer, which is a big deal because something like a third of relationships end from those stresses, and we delight that our three-year-old son Kelric is thriving.

It’s 2009. My name is Angela Patterson and I’m a 3-year survivor. Thank you, BCRC. I am not alone.

Next - 76 Reflections Upon 2009 - Employment
Previous - 74 Living

74 Living

2009-09-25T07:10:00.008-05:00

It’s almost the end of September 2009. Once again I will be a participant in the Champagne Brunch and Silent Auction that benefits the BCRC. Once again I have been chairing the committee that handles registration and checkouts. We handle item distribution, too. With two years of experience performing this role I’ve got a lot of the processes worked out and refined for how my group does its thing, and I’ve spent long hours incorporating last year’s suggestions and updating the processes to make sure this year goes even better than before.

As I’ve participated in this labor of love, my mind has occasionally wandered back to that German woman at the poetry festival in 2008 who suggested that maybe it was time for me to “move on” from cancer. The memory still makes me burn with anger. It also ties into a larger perspective on giving each other the space we need to express ourselves.

Quick recap: this woman and I both participated in a poetry workshop at a poetry festival. I read my poem about radiation. She said that her husband had had prostate cancer and she could identify with many of the emotions my poem brought out about cancer treatment. She then later approached me and said that her husband had at first busied himself with lots of volunteer work, participating in a local group and supporting others going through treatment. She said that you reach a point where you’re ready to move on, and no longer throw yourself into these things. Her implication that maybe it was time for me to move on and stop participating so actively in breast cancer causes shocked me at first, then found its way into “deeply offended” territory. My stance then and now is that I work hard to balance my cancer-related activities with other aspects of my life, and I’m not out of balance and she had no right suggesting that I correct an imbalance that doesn’t exist.

I believe that it is important for citizens to participate in volunteer work. I believe that the details of the work should align with your passions, but it is just good for the soul to get out of your regular circles sometimes and do something that benefits others.

Back when I served on the volunteer-only board of my local homeowners’ association, I found it to be a lot of work for a lot of frustration. The people who appreciated my efforts were mostly silent. The loudly vocal minority who disagreed with the board’s stance on a couple of key topics made it miserable to do what I sincerely thought was best for the neighborhood. I found a new respect on what politicians go through when they try to balance voting their conscience – doing what they feel is right over what is popular or what is easy.

At one point I visited a number of residents in the neighborhood to get their proxies for an election coming up. Sitting down and talking to my “constituents” one on one was an enlightening experience. In some ways it outlined how unrealistic the expectations were for many people and their neighborhood HOA’s responsibilities. In many ways I was grateful because it helped me see the patterns of what my neighbors wanted, like a playground for their children. I felt like a better servant to my community when I sacrificed a considerable amount of personal time to engage in these one-on-one conversations. Then I participated in the neighborhood meetings between the board and the homeowners and experienced people who were interested only in yelling their points of view and not listening to anything.

By contrast, my volunteer work for the BCRC has been about equally time consuming but scads more rewarding since the people I’ve helped are actually grateful for my sacrifices and don’t mind telling me so.

I no longer scan the Internet reading personal stories of people’s cancer journeys on a regular basis. I’m too busy living my own post-cancer journey. Sometimes I have wondered whether it’s worth it to continue writing anything in this cancer-centered blog. Does this blog still inspire anyone or educate anyone or give anyone hope?

Then Jennifer wrote me that she was scared, pregnant, and newly diagnosed and wanted someone to talk to. She lives in another state from me. I don’t know how she found my blog but I’m so glad she did. I called. We talked. I hooked her up with the Pink Ribbon Cowgirls and now she’s got a community of breast cancer sisters online to support her – several of whom were also diagnosed while pregnant. She is not alone and I’m pleased to have been in the right place at the right time to foster that connection.

The speech I’ve written for this year’s Champagne Brunch focuses on connections, and how important they are when you’re dealing with a trauma. The speech is specifically aimed at the trauma surrounding a breast cancer diagnosis, but my real message is about healing from any trauma.

Reaching out and finding others like you who have been through what you’re going through is something I believe to be an essential element of healing.

Where would we be if everybody withdrew from their volunteerism, their activism, and retreated back into their own little circles of friends and events without giving of themselves?

In other words, where would we all be if everybody “moved on” like that woman suggested I should? I firmly believed last year that the woman was wrong to suggest such a thing then. I’m still convinced of it now.

I’m not going to quit my day job and throw myself into a new non-profit to tackle some element of breast cancer. I’m not going to volunteer for every breast cancer-related event in my area. That is not how the world can expect me to make it a better place.

I will, however, make time for any person who has been diagnosed with cancer and needs someone to talk to.

I will continue to make time here and there for the occasional volunteer-based non-profit-supporting project. The next project might be to help my child’s Montessori school, or to help Wonders & Worries instead of the BCRC. That plays into what I mentioned earlier about respecting one another’s choices. A mom who helps with her child’s school’s fund raiser but never helps with a cancer event is doing work just as important, in my opinion, as the woman who dedicates her life to raising funding and awareness about breast cancer, or multiple sclerosis, or diabetes, or birth defects, or hunger, etc.

I think I am setting a good example for my little boy by actively giving my time and skills to causes about which I feel passionate.

That is not "moving on." That, dear woman, is called "participating in life." I fought my battle with cancer so I could do just that – LIVE.

“Life isn’t rich if you merely exist. Life is rich when you participate in it; notice the nuances; and never settle for just being a bystander.” ~ Angela Patterson

Next - 75 The Speech
Previous - 73 Public Speaking, Friends Diagnosed

73 Public Speaking, Friends Diagnosed

2009-08-09T15:57:00.011-05:00

May 2009 brought several changes. One was a another job change. The new job in January was a contract position. The people were nice and the company wanted to hire me permanently, but I just didn't enjoy the work.

On the same day my grandfather died, I received the formal job offer for a dream job. I gave my notice, fulfilled it, then went to work for the dream company in May. I get to work as a data analyst now and I love it. I'm crunching numbers and building reports and databases. I'm expanding my Excel and Visio skills and getting to teach others to do the same. It's great!

In May I learned that one of my girlfriends had been diagnosed with breast cancer. It felt like a blow to the gut to learn about that. Like me, she's a 30-something woman with a husband, a full time job, and a young child. Thanks to the Pink Ribbon Cowgirls, I have many friends now who are breast cancer survivors. This was the first of my friends with breast cancer who had been a friend before her diagnosis. It doesn't make sense for me to take her diagnosis personally, but there was a part of me mentally shaking a fist at breast cancer while yelling, "Leave my friends alone!"

The longer I'm alive, the less cancer is "somebody else's problem." It keeps resurfacing among people I know.

In June we lost our very first Pink Ribbon Cowgirl to breast cancer. The news depressed me for two days. In my head, I knew it was bound to happen sooner or later. Statistically, if you make friends with a group of people who have been diagnosed with cancer, sooner or later one of them is going to pass away. She died on June 11th, and many of the Cowgirls gathered at a member's house to grieve and remember. She was one of us, and it rattled us on several levels. We spoke of her and remembered her. We swapped stories of diagnosis and treatments (since many of us hadn't met each other before), and the mastectomy girls raised their shirts and compared their doctors' work. (Mastectomy survivors do that sometimes when they gather in groups. It's something a little foreign to us lumpectomy girls.) It was an interesting evening.

We celebrated the life of our sister survivor, a single parent, and mourned the increased difficulties of her 14-year-old son having to go on without his mother. I was asked to say a few words at her memorial on behalf of the Pink Ribbon Cowgirls, and so I found myself for the second time in two months speaking the praises of a life lost to breast cancer.

At the get together for our lost Cowgirl, I got to meet Michelle Bynum, a powerhouse of a personality whom I liked right away. She lives in Georgetown, so it isn't often that I see her at Austin-based events. I met some of the people in her group in November 2006 when I did the Race for the Cure. Her supporters wore t-shirts that said "Michelle's Angels" and they had a mission to educate people that young women can and do get breast cancer. Having heard about this woman in 2006, when she had already raised tens of thousands of dollors for the Komen foundation, it was something of a shock and a delight to put a name and a face together when I met her at my friend's house.

Michelle's doctor dismissed her lump as something non-cancerous without even testing it or suggesting that she see a specialist. The two-year delay between concern and diagnosis cost her precious time, and she was Stage III when she was finally diagnosed. She went through treatment and into remission, and then her cancer came back as Stage IV. Now she's the guest chair for the 2009 Race for a Cure for the Austin Komen fund raiser and I think she's an inspiration. She wants very much for women to be their own advocates, and to have the strength to keep asking questions whenever something in their bodies doesn't feel right. I agree with her. If you ask a doctor to investigate something odd and the doctor just poo-poos you, then go to a different doctor.

In July I gave a training in Excel for a group of property management people. This seems to be my year for public speaking. To my credit, I've come a long way with respect to my training style and pacing. I got off to a rocky start by spending too much time on navigation shortcuts, but then got into the "interesting" stuff and held their interest to the end. That was gratifying.

Now it's August and another of my friends has been diagnosed with breast cancer. (Because the medical details of my friends' lives are private, I've decided not to give names or details in a forum as public as a blog. So I'm not going to mention their stages or treatments here. Michelle's story is already public knowledge so I felt that repeating it here might serve to reach someone who needed to know.) My reaction to my second friend's diagnosis was less wrenching than my first friend. Maybe I'm getting conditioned to it.

I'm up for a 3-5 minute speech in September during the program portion of the Champagne Brunch and Silent Auction that benefits the Breast Cancer Resource Center. I'm looking forward to that. I've been working on my speech for weeks now and still have a ways to go before it's at a point that won't embarrass me to share it.

Rue McClanahan will be our guest speaker at the Brunch this year. I'm really looking forward to hearing her speech, and more than a little excited to know I'll be on the same stage even though not at the same time.

Next - 74 Living
Previous - 72 My Grandfather Died From Breast Cancer

72 My Grandfather Died from Breast Cancer

2009-06-12T10:20:00.014-05:00

April 2009

GRANDFATHER LOST

On April 30th my maternal grandfather died. This was my grandfather who was diagnosed with breast cancer in 2006. This was the man who, after having a tumor for 20 years and then receiving a diagnosis of cancer, chose to do nothing for two more years. He chose to believe what the ignorant VA doctor had told him years ago -- that men don't get breast cancer.

In 2008 he finally had the tumor removed. The pathology reports indicated that the cancer had spread - a sharp contrast to the biopsy's pathology report from 2006 which indicated the tumor had not spread yet - and then he opted out of further treatment. He felt that quality of life was more important than quantity. The family respected that decision and didn't give him a hard time about it.

The shame of it was that Grandpa's cancer was mucinous carcinoma, a rare form of breast cancer that grows so slowly that it almost never kills anyone.

We know the cancer metastasized to his lungs. I suspect it was in his liver, too, given his lack of appetite and the way his body wasted away. Since he had no private health insurance and no curiosity about the extent of his disease, he opted out of any kind of scans that would have given us more information about where or how much the cancer had spead.

When his health went downhill in April, the symptoms quickly snowballed. He went from frail but stable health to dependecy upon an oxygen mask within mere weeks. Once in the hospital and on oxygen he remained mentally alert and lucid, though continually exhausted from breathing.

I entered his hospital room on a Wednesday afternoon, not knowing he would be gone in less than 24 hours. I cheerfully said, "Hi!" as I came in, happy to see that my mother and my uncle were there with Grandpa. Grandpa answered, "Hi for the last time." His response shocked me and he smiled.

I was there for several hours. I got to hold his hand and tell him that I loved him. I got to give him one last hug. It was a gift to see him just before he died. I treasure the memories even though it was difficult to see him like that. His feet were horribly swollen, with toenails turning black. His dentures kept falling from the top of his mouth to the bottom, making it difficult to understand him when he talked. But he was the same old Grandpa, bluntly asking, "What do you want?" when hospital personnel entered his room.

My mom and her brother and sister took turns staying with him around the clock, gently adjusting his oxygen mask back in place when it slipped off. My mom ended up caring for him overnight two nights in a row, so she was exhausted when she made The Call to me at 8:30 in the morning just minutes after he passed.

He died on a Thursday. A few days later on Saturday I delivered the eulogy at his funeral - something I'd never done before. I struggled with what to write. I interviewed my mom and took notes. Then I wrote a eulogy that I think honored him without making him sound unrealistically angelic. I think it went well. People smiled in the right places. Nobody said I was weird for calculating exactly how many days he had lived - 30,991.

I retold a story of Grandpa and a group of baby ducks. One of the ducklings ran up to him. He picked it up, then tossed it into the air. The duckling fell. Then it ran to him again. He picked it up again and tossed it into the air. This time it began to fly. Then all the ducklings in the group took turns running to him and he tossed each one into the air. It became a great game that they all enjoyed. That was my favorite memory to recount, even though the memory wasn't my own.

We brought 3-year-old Kelric with us to the funeral. I carried him up to the flag-draped coffin. (Grandpa was a World War II veteran and the flag was a fulfillment of his wishes.) My intention was to help Kelric understand why we would not be visiting his great-grandfather anymore. I thought he might want to say good-bye. Kelric seemed completely disinterested in the body and just wriggled to get down.

Weeks later in a private moment with Daddy, Kelric confessed, "I don't want Mommy to lie down in a box with a flag over it." It broke Guy's heart to hear this, and later broke my heart when Guy told me. There was more to the discussion which I've forgotten, but in essence Kelric realized that I had once been sick, that his great-grandfather had been sick, and since his great-grandfather had just died the little boy was terrified that I would soon die as well.

Kelric is still struggling with the loss of our family dog Wendy from last December. I keep trying to gently explain that Wendy died because she was very old for a dog; that death is part of the circle of life and all living things die one day. Kelric randomly tells us he's very sad and he doesn't want to miss Wendy. Where did Wendy go? Why did she die? Why did her body quit working? And so on... Now he's asking questions about why Grandpa Behne died. I'm worried that the next time I get a cold he'll be terrified for my life because he'll associate "getting sick" with dying.

Kelric noticed my lumpectomy scar recently and asked, "What's this?" I've already forgotten exactly what I told him, but I know it was short yet truthful and didn't lead to more uncomfortable questions. Now that he's three it's time to begin introducing him to this little part of our family history so that he won't learn it one day as a Big Secret Revealed. We need help learning the vocabulary to explain things to him.

I know that Wonders and Worries can help us learn to talk to our young son about serious illnesses and death.

My cancer is long gone. My family has moved on. But it seems that part of moving on means going back and revisiting the past in a language that soothes the fears of a young child. We will do this for his sake, even though it has an emotional cost for us.

FARE THEE WELL
I'm going to close with a reprint of the last two paragraphs from Grandpa's eulogy.

I sat next to his hospital bed three days ago, and adjusted the oxygen mask for him. I held his hand. I looked at him with worry and concern, and he happened to look up in time to see that expression. He was frail and weak. He was struggling to breathe. But when he was awake he was lucid and aware. He saw the look on my face and did something that surprised and delighted me. He tenderly reached up, and brushed my cheek. That single touch conveyed with absolute clarity his message of, “Have peace, child. I love you, too.” He never could have said it. Too many words remained unsaid. But I saw his eyes as he touched my face, and I knew.

Grandpa John Behne, you went softly into that good night just as you wished to go, on your own terms, in your own time. We wish you peace. Accept our honor and respect today, and fly with your little ducks now that sickness and frailty are behind you. Thirty thousand, nine hundred and ninety-one days… I loved you, too.

Next - 73 Public Speaking, Friends Diagnosed
Previous - 71 Yearly Mammogram

71 Yearly Mammogram

2009-06-09T11:44:00.024-05:00

April 2009

MAMMOGRAM
When it came time for my yearly mammogram I was a mess. My confidence and excitement from becoming a 3-year survivor had dimmed. I could hardly eat anything the morning before the mammogram.

What if my cancer had come back but the tumor was too small to feel yet? What if I only thought I was fine but I was really in trouble? What if I had to go through treatment all over again?

This happens every year. I know that it's normal to experience these doubts and fears, but that doesn't stop me from going through the roller coaster of emotions. To me, a mammogram is a test you can't study for but you could die if you fail it.

The phone call to my husband went something like this:
Me: "Everyone looks fine! There's no cause for concern."
Husband: "Of course. I told you that."
Me: "I know, but I feel better hearing it from the technician. She said the radiologist saw nothing that needed further investigation."
Husband: "Good for you, honey."
Me: "Yeah. Good for me."

I went back to work relieved and all smiles.

The control freak in me came out as I insisted upon taking my films with me when I left the hospital. I proudly carried them to my breast surgeon's office a week later and proudly carried them back home again after that uneventful checkup.

INSURANCE
Part of my fear revolved around money. There are no easy answers for most people when it comes to health insurance and cancer.

Once you've had any form of cancer, your only realistic option is to stick with some kind of group coverage through your employer. What happens if you are a small business owner or a self-employed person with no group plan? That means you end up with no coverage, coverage that excludes anything related to cancer, or high premiums for major medical insurance that almost isn't worth having. When I dealt with cancer-related surgeries and treatments in 2006, the medical expenses were significant even with insurance, not to mention the lost wages for me and my husband from time away from work and my reduced work schedule during chemo.

When I was job hunting earlier this year, the availability and level of health insurance coverage was a potential deal maker/breaker for me. You can't exactly grill most potential employers, however, on the details of their health insurance plan before the first interview - or before an offer.

One decision that cancer survivors face when looking for a job is whether or not to bring up the fact that they have or had cancer. I found it to be better not to say anything during the interview process.

I've been fortunate to have been able to hold onto health insurance in one form or another through my unemployment and subsequent contract employment.

Next - 72 My Grandfather Died From Breast Cancer
Previous - 70 Three-Year Survivor - Whoo-hoo!

70 Three-Year Survivor - Whoo-hoo!

2009-06-06T21:03:00.024-05:00

March 2009

I hit my 3-year anniversary as a survivor in March 2009. It was an exciting day. I thought at first that it would be bittersweet like the 2-year anniversary was. I grew more anxious about it as the day approached. Once it arrived, however, I felt like shouting my joy from the rooftops.

Three years and still counting!!!

As mentioned in earlier posts, my tumor was triple negative. That means it wouldn't respond to a whole range of hormone-based treatments if it recurred, since my tumor wasn't fed by estrogen or progesterone. Also, my tumor was did not show an overabundance of Her-2/neu receptors. That's a good thing, but it also means I don't have Herceptin as a drug that help me in the event of a recurrence.

Being triple negative means I don't have to take Tamoxifen for 5 years after chemo and radiation. It wouldn't do me any good. I'm happy not to have to deal with the unpleasant side effects that can accompany Taxomifen, but sometimes it's unsettling knowing that my only defense is "watchful waiting" and that's not a defense at all. That's a call to arms if something resurfaces.

So imagine my distress when a study was published last year showing that triple negative breast cancer survivors tend to have more aggressive tumors, and recurrences tend to happen within the first three years. (My tumor was as aggressive as you can get, scoring an unfortunate 9 of 9 on the Blooms-Richards scale.) Triple negative breast cancer people tend to have a higher mortality rate than our hormone positive counterparts. Younger women tend to be more likely to get triple negative breast cancer.

Women with hormone positive tumors tend to get recurrences within the first five years. That I made it three years without a recurrence is a really, really big deal. It doesn't necessarily mean that I'll never get a recurrence, but the odds of one happening now are considerably less likely than they were a year ago. Hooray!

So enough for now about the cancer talk.

Another momentous event occured for our family in March 2009. Kelric turned three! We had a birthday party, complete with a cupcake cake made to look like "Frank" from the movie Cars. (Way to go, Central Market!)

We had a red car pinata for the celebration, filled with toys rather than candy. Unfortunately, the weather had turned cold and wet so the planned outing at the park was scrapped and the party was held at home. That didn't bother the birthday boy, but it did pose a problem for Mom and Dad. Where to hang the pinata?

We opted for the old "pinata on a stick" option. That is to say, Dad held put it on the business end of a broom and the kids took turns whacking it.

Unfortunately, the silly thing wouldn't break! The kid-sized broom handle Kelric and Julian were using to hit the pinata started getting all kinds of kinks in it while the pinata itself remained undamaged. Now what? After some deliberation, we decided to encourage jumping. That worked!

The party for the three-year-old was great fun. Later in the month Daddy turned...another year older. Kelric announced that Daddy should have a firetruck birthday cake, so that's what I got. (Thanks again, Central Market!)

Hooray, March 2009!

Next - 71 Yearly Mammogram
Previous - 69 Kay's Memorial Service and Uncle Kenneth's Passing

69 Diana's Memorial Service and Uncle Kenneth's Passing

2009-05-16T14:37:00.011-05:00

In February 2009 I went to Diana's memorial service. Her daughter sang "Amazing Grace" during the service and I was blown away by the purity and beauty of her voice. Diana's husband read a moving tribute. His voice broke somewhere near the end and you could hear the increased rate of sniffles (including my own) in the large assembly of family, friends and co-workers. It was hard to go, but I'm glad I went.

My beloved survivor bracelet broke two days before the service and I was worried that I wouldn't be able to get it fixed in time for the service. A new piece of history in the survivor bracelet saga... I took it to the local jewler to be restrung. The girl behind the counter started to estimate which day it would be ready. I told her that I needed it in a few hours for the memorial of the woman who gave it to me. I think she actually gulped.

I had strung it back onto the original wire at home and had carefully brought it intact into the jewelry store, but one end slipped out of the jewerly store lady's fingers and beads scattered everywhere.

I reassembled the beads into the order I wanted for the second time that day while Guy kept Kelric from breaking anything in the store, and then we left to run errands. When I returned as my last stop before driving to the memorial service, she gave me the beautifully restrung bracelet with every bead cleaned (and almost in the same order I had left it). No charge, she said. Tears welled up and I struggled not to cry.

That evening I learned via e-mail that my Great Uncle Kenneth Weaver had passed away from Lymphoma just the day before. Cancer is such a pervasive disease. I hate it.

So I attended Diana's service in Round Rock on a Saturday where I was pleased to see many friendly ex-co-workers one more time. Then on Sunday my mom and I drove to Caldwell for the viewing of my uncle's body. I opted for the viewing over the funeral because I could still pay my respects but have a longer time with fewer tears to visit my cousins. It was wonderful to see them again. They assured me that my uncle had been in quite a bit of discomfort for some time due to his cancer, and that his passing was a blessing. I believe he was in his eighties.

My mom had broken her wrist and wouldn't have been able to drive from Austin to Caldwell on her own, so I was glad that I was in a position to take her. Showing uncharateristic wisdom, we left 2-year-old Kelric home with Daddy.

Kelric still struggles to come to terms with the loss of our dog Wendy. He doesn't understand what cremation means and remains puzzled at how Wendy can fit in the wooden box that we keep in the high window. We remain puzzled at how to explain to such a young child what death means.

Next - 70 Three-Year Survivor - Whoo-hoo!
Previous - 68 Goodbye to Diana Knight

68 Goodbye to Diana Knight

2009-02-15T14:11:00.006-06:00

During my unemployment in January 2009 I received word that my former co-worker Diana Knight had died from breast cancer. Her husband JW gave me a photograph and permission to use her real name, so I have modified the original blog I had posted with the pseudonym "Kay" to honor Diana the way she deserves.

Diana had been diagnosed a few months before I was. I was pregnant with Kelric when she was in treatment. I remember vividly our conversation one day when I had a noticeable belly. She said that chemotherapy left her feeling nauseated unless she ate small amounts of food throughout the day. I had been dealing with that thanks to morning sickness. She teased that it felt like morning sickness but for a less happy reason. I remember telling my husband about the conversation that night, remarking how grateful I felt that I didn't have cancer. Little did we know, of course, that I did have breast cancer! It just hadn't been diagnosed yet.

Diana's breast cancer had already made it to the chest wall when she was diagnosed, so she was at Stage IV from the get go. I marveled at the way she handled it.

Diana continued to work during treatment. She only took enough time off to deal with surgeries, appointments and infusions. She earned a promotion to a vice president position within the operations side of the company and she rose to the new responsibilities. People in our office and a regional office reported to Diana. Her entire Austin staff wore survivor bracelets in her honor. The bracelets had pink and white beads with silver ornaments and they were handmade by one of Diana's staff, a fellow breast cancer survivor.

Diana continued to travel as part of her work. She even influenced her local cancer center to accommodate her travel schedule by staying open a little late just for her. That is something I would never be brave enough to insist a cancer center do. She had a great philosophy, though, that she was the consumer and the cancer center was the provider. She was paying them a great deal of money so they could bend a little to help keep her treatments on schedule. Go Diana!

I admired Diana. I appreciated her strength and her positive attitude.

We talked about our cancers after I returned from maternity leave. I read to her the Awakening of the Tiger Woman poem I had recently written. It made her cry. Later that day she showed up in my office with a survivor bracelet just like her staff wore. That made me cry. I was so touched to have that bracelet and all the hope and sisterhood it symbolized.

I'm fuzzy on the details, but I know that Diana’s first brain tumor showed up around the time she completed chemotherapy or shortly thereafter. The second brain tumor was situated near where the first one had been, so within a year she had endured two surgeries to remove brain tumors. She went through radiation to her head. She never stopped wearing her wigs to work. The radiation affected her memory and made it more challenging for people to work with her in this new absent-minded form. Her husband stopped working so that he could drive her where she needed to go. Eventually she needed perpetual chemotherapy. "Cancer's always in my body somewhere," she told me. The drugs would knock it down one place and it would show up someplace else.

She battled breast cancer for four years before her body developed resistance to all the help chemotherapy could give her. I'd see her in the break room occasionally and touch base with how she was doing. She was always upbeat around me.

I know that I preferred to put on my most positive face when I was around others and I would try to only let my husband see the moments that revealed pain or fear. But Diana would not just appear in a room and avoid sounding scared or depressed. She would effectively sashay into the room and own it. It was impossible to feel sorry for Diana when she exuded such confidence and serenity.

Diana had no use for remembering the names of the chemotherapy agents. I knew what drugs I had been given. I learned their scientific names and their common names and how they each worked and roughly for what kind of cases they were appropriate. Diana had no idea what drugs she was given and didn't care. It was unfathomable to me to choose to be so out of touch with what the medical team was doing to your body.

Diana was just at the other end of the spectrum from me. I’m of the My Doctor Is My Partner In Treatment And We Make Important Decisions Together camp and Diana was of the Just Tell Me When And Where To Show Up So I Can See My Daughter Graduate High School And Get Married camp.

I spent the first half of my chemotherapy treatments on leave and when I did return to work I couldn't handle the 40-hour work week because chemo was so rough on me. I told Diana that I admired her for being able to work full time and overtime while in treatment. She would even work from her notebook computer during treatment.

She told me the difference was that I had a newborn at home and she admired me for coping with a baby while going through chemo. Oh yeah, I had forgotten about that little detail. That exchange taught me to appreciate the different situations and the different ways people handle them. There is no one "right" way to cope with chemo and it's okay to accommodate your own situation and your own body's ability to handle treatment.

I lost the beloved survivor bracelet Diana had given me. It tore me up. The clasp used a circle on one side and a rod on the other side, and sometimes it would work itself loose and just fall off my wrist. A day came when I saw it in the morning and missed it by the afternoon, and had no idea when or where it disappeared. I waited a while before confessing the loss to Diana. She took it in stride. The co-worker who had made the original had quit and moved on, but Diana still saw her at professional association get-togethers and Diana promised to ask her to make a new one for me.

Diana kept her promise. The new bracelet was too big. It had a “lobster claw” clasp but just rolled off my wrist. I didn't say anything to Diana about that. I felt extremely grateful to have a substitute symbol to support Diana’s fight with cancer as well as my own.

Later I found my original bracelet. It turns out that the last time it fell off I had put it in my purse until I could take it to a jeweler to have a safety chain added. I had forgotten about it and failed to turn up the bracelet when I later searched my purse - twice. After having confessed the loss to Diana and having received a new bracelet, I couldn't bring myself to tell her I had found the original. So instead I quietly passed the new survivor bracelet on to a new survivor, the co-worker of one of my friends. I confessed the bracelet’s history to her and felt delighted when she said she would have earrings made from some of the beads so it would be small enough for her tiny wrist.

By giving away the second survivor bracelet I got to share the sentimental wealth as a giver, and I know that Diana would have approved. I had the safety chain added to my original bracelet and it remains a special gift, now laced with a kiss of sadness as it holds the memory of someone lost from the land of the living.

Diana's daughter is only 14 years old. All she wanted was to live long enough to see her daughter grow up and get married, and now that wish will remain forever unfilled.

Diana's memorial service is coming up. She wanted to be cremated, so those wishes were fulfilled and her memorial was put off to coincide with her birthday.

I have a new job with new co-workers now. I'm looking forward to seeing many of my former co-workers at the memorial service. My new place of employment has a cemetery adjoining the north side of the property. We see the gravesides set up for services, and the mounds of fresh flowers left behind afterwards. It often leaves me to reflect upon how funerals and memorials are rituals meant for the living, to help us honor and properly say good-bye to the dead. I'm looking forward to participating in that ritual soon so I can honor Diana and chorus to her husband and daughter that Diana was a special, vibrant woman whose life touched others.

My memories of Diana are linked with traits of strength and bravery, of never giving up, and of accepting bad circumstances without letting them rule you. I know she will be pleased that I still celebrate her life even as I honor her death. I still admire her.

Goodbye, Diana. We miss you.

Next - 69 Diana's Memorial Service and Uncle Kenneth's Passing
Previous - 67 Choices Part 2: Parking

67 Choices Part 2: Parking

2009-02-15T13:46:00.021-06:00

It is so hard to find time to write these days. I’m always super busy and the quiet time I need to concentrate on writing is at an all time premium. Kind of like the price of gasoline… So that explains the long delay between Control Part 1 and Control Part 2.

Something has come up that is much more important and timely than Control Part 2 so I will keep it short. Basically I wanted to mention something I did once I returned to work after maternity/cancer leave.

I started parking in different parts of the company parking lot.

This sounds like a small thing. It is a small thing, but at the same time it’s a big thing.

I used to always park in a certain area of the parking lot – the part in back close to the back door.

After my leave time I began parking all over the place – in the front, around the sides, under the trees, in the carport-like covered spaces, out in the open... I never knew from one day to the next where I’d end up. My only rule became “Not near the crepe myrtle trees during the months of the year when they’re expressing dew.” That dew is sticky and doesn’t come off until you wash the vehicle. Occasionally I would go out the front door when my car was around back or vice versa, but the parking lot was small enough that this wasn’t a problem.

The empowering thing about this freeform parking behavior was that I chose not to be bound by certain old habits. Cancer took away certain choices and illusions of security. Making my parking habits less predictable gave back some elements of control. I created more choices by shaking off slavery to old habits. That was a very big deal.

I worked for that company for five years. On December 16, 2008 they eliminated my job and laid me off. Nice, eh?

That brings me to the more important and timely blog entry: Goodbye to Kay.

Next - 68 Goodbye to Kay
Previous - 66 Choices Part 1: Hair

66 Choices Part 1: Hair

2008-11-23T18:03:00.010-06:00

Me with our dog Wendy - Nov 2008

HAIR

It was a night of joy in a grocery store when I spontaneously decided over a year ago to buy a package of two hair clips. They’re silver with blue rhinestones. I remember the elation I felt then – the hope. My hair was growing back and I knew that someday my hair would be long enough to make use of the clips.

I must have put them under my bathroom sink in anticipation of the day – and then forgotten them – because it was with a jolt of recognition that I accidentally discovered them this morning.

For the first time in a long time, I pulled my hair back.

Many female cancer survivors I’ve known have grown their hair long as soon as they possibly could. They have rejoiced in the first time they could pull it back into a ponytail again. I was happy for them but I didn’t share their desire to wear a ponytail at the first opportunity.

When my hair grew back I was shocked to discover that I liked it short. I had never had short hair in my life before it grew back after chemo. It felt rather liberating to sport a “short and sassy” style. I kept trying to recreate with haircuts the cute pixie look I noticed one day in December 2006 on an especially good new hair day. I especially loved my short cut even as it grew out after the makeover in October 2007.

It took a while before I felt ready again to dedicate 20 minutes or so each morning applying styling products and heat to try to make my hair look good or at least good enough not to be embarrassing.

This morning when I pulled it back with the clips I felt like shouting out with joy, “Hey! Look what I can do!”

It’s not about having hair long enough to style. It’s about having choices.

I know that I have some blog readers who are still in treatment, or who are in treatment once again, and I’m not trying to rub it in that I have hair and they don’t. They are in their place and I am in mine. My place at this point in my life is one of immense gratitude. Cancer took a lot away from me. In this one area I am rejoicing because this particular loss was reversed.

When I was in chemo, hair loss embodied the wide loss of control cancer and its treatment forced upon me. Surgery, chemotherapy and radiation put me through a lot of discomforts that made it clear that I did not have the control over my body that I had had before. Hair loss wrapped that concept into a neat package and reminded me with sharp jabs every time I saw myself in the mirror or felt my naked scalp. My own body had become unfamiliar and alien, and it stayed that way for months. Every time I started to adjust to the new rhythms my body had taken on, another side effect would change everything and bring me back to the beginning of figuring out how to care for myself.

Losing my hair was hard. Some days I had confidence in my new look and took solace in the short showers and the freedom from hair care. Some days I grieved it bitterly. I chose to go through chemo, though, and I knew that choice would come with a price steeper than mere money. I believed the chemotherapy gave me a chance to continue my life without recurrence. I’m still waiting to see if that gamble paid off but it’s looking good so far. It just never ceases to amaze me how knowing something bad is coming doesn’t shield you from experiencing the swings of heavy emotions that come with that event. The knowledge just helps you hold onto your sanity while you’re in the throes of the event.

So I made my choices and I paid the emotional dues.

Now I brush and spray and blow and spray some more and find myself disappointed when the perfect helmet head collapses an hour later. But it’s my choice to spend time every day trying to coax it into a shape I find pleasing.

And it was my pleasure this morning that I could trade more intense styling efforts for cheap silver blue clips with blue rhinestones. I’m 32 months out from diagnosis. My eyes brimmed with tears this morning – because I have that choice once again.

December 12, 2008
I have two things to add to this post.

1. I realized that just as rape and sexual harassment are about power and not about sex, losing one's hair is about control and not about vanity. I would encourage anyone upset about losing hair - be it from chemo or from male pattern baldness - to not beat themselves up too much about grieving that change.

2. Our beloved dog Wendy died from old age this past Saturday, December 6th -- just two weeks after these photos were taken. She was 12 1/2, which is very old for a Great Pyrenees. We miss her very much and will always cherish her years of gentle protectiveness, love, and super soft fur.

She passed away quietly in the house overnight, after spending a happy day outside in the cold weather she loved. We loved her and she knew it. She loved us and we knew it. Right now everything reminds us of her and of the pain of losing her. The back yard is too empty. The house is too quiet. The bowls have been washed and put away but the uneaten dog food still sits in the pantry with no one waiting to eat it. Mourning Wendy hurts, and yet I'm grateful for that pain. We're alive to feel this heartbreak, and we ache from this separation because of the love that came before it. I'm glad we risk heartache to experience joy.

This morning my son awoke in a happy mood. He knows I miss Wendy. Kelric cuddled with blankets and his toy owl in his bed and I put my hand on him in quiet companionship. He responded with, "I love you too, Mommy." Then he told me, "I don't want to miss you." I had to fight to hold back the tears that suddenly filled my eyes. I thought about my cancer and my fear that it will return, and I thought about how grateful I am for every day I get to spend on this earth with my son and husband. "You don't have to miss me, Sweetie," I told him. "I'm right here."

And so I shall remain.

Next - 67 Choices Part 2: Parking
Previous - 65 Sunlight Through a Glass of Soda

65 Sunlight Through a Glass of Soda

2008-11-13T09:10:00.003-06:00

Not long ago I had lunch at Zax Pints and Plates, a restaurant close to work. The weather was lovely so I sat outside. My table was under a tree and dappled shade made patterns around me as a breeze blew. I ordered a Dr. Pepper and the waiter set it down on the sunny side of my table.

At first I could only stare as sunlight turned an ordinary glass of soda into something spectacular. Little bubbles from the carbonation floated through the brown liquid, sparkling as they rose. Bright flashes of light glinted off the ice. In that moment this simple image seemed incredible to me – beauty so intense it defies my pathetic attempts to describe its magnificence.

This wasn’t a mere soda. It was a work of art. It was a fleeting moment of perfect beauty as the ice melted just a little and carbonation escaped in tiny increments.

Being a person who analyzes everything and loves finding meaning in the context of a matter as well as its surface, I thought that the sunlight through the glass of soda made for a powerful metaphor:

Sometimes a simple thing transforms the ordinary into the extraordinary.

I felt privileged to have noticed the transformation. Then I picked up my glass and drank my soda, and went on to enjoy the rest of my lunch.

I reflected on how I felt as though I noticed and appreciated small treasures like that even before I had cancer. Now I’ve got the rest of my life ahead of me once again, and I’m determined to make it count.

I see small treasures with renewed appreciation, because I’m still alive to let them light me up inside. I’m so grateful for my life.

Thank you Dr. Carsten Kampe, my incredible oncologist. Thank you Dr. Timothy Djuik, my radiation oncologist. Thank you for doing what you do – for enduring the pain of losing patients – for staying in your profession and slogging it out with cancer so that people like me can have moments like these. Thank you Dr. Susan Love and all of you other surgeons, specialists, oncology nurses, medical support staff, fund raisers, grant writers, event coordinators, contributors, volunteers, advocates, and rabble rousers who work towards diagnosing, treating, curing and preventing cancer. Thank you to all the people who do what you can in the ways you are able to contribute towards the monumental effort to survive and thrive in the Life After Diagnosis.

Even the memory of sunlight through a glass of soda has the power to light me up inside.

What memories make you glow?

Next - 66 Choices Part 1: Hair
Previous - 64 Grandpa Metastatic

64 Grandpa Metastatic

2008-11-02T14:40:00.011-06:00

In September 2006 my maternal grandfather was diagnosed with breast cancer after a needle biopsy. He got the diagnosis and chose to do nothing. Part of him didn’t believe he had breast cancer.

In 2008 he had a hernia, and finally decided that he had become uncomfortable enough from the hernia to risk surgery. The surgeon refused to repair the hernia unless Grandpa allowed him to remove the large breast cancer tumor on his chest as well.

The surgery went well for both issues, but during surgery the surgeon noticed a shadow on his lungs. A chest x-ray and CT scan were ordered to follow up and they revealed two tumors – one on each lung. They’re big at 4 cm and 5 cm, respectively, and that means Grandpa’s breast cancer has become metastatic.

Grandpa’s form of breast cancer is a rare one. He has mucinous (colloid) carcinoma. It is slow growing and usually has a good prognosis. Then again, most people don’t wait 20 years after they first notice a lump before doing something about it.

Grandpa is a World War II veteran. He told me he mentioned the lump to the doctor at the VA. He was told that men can’t get breast cancer.

I know that's misinformation, of course. It's less common for men to get breast cancer, but men do have a small amount of breast tissue and they are vulnerable to the disease. Here is a link to an informative posting on Dr. Susan Love's web site about breast cancer and men.

He insists that his cancer started when he was a young man, smoked cigarettes, and carried his cigarette lighter in his shirt pocket. That is approximately where the tumor was. Of course, this is the same man that suggested that the lung tumor might actually be dog hair. Dog hair on your lung, Grandpa? Clearly this is a person who does not want to face reality.

He’s 84 years old. He doesn’t want chemo. Doesn’t want radiation. He didn’t exactly want the surgery that removed the tumor but I don’t think he regrets it. He complains that the scar itches.

At first it shocked me that he didn’t want treatment. Then again, at 84 it’s a quality of life issue. At 84 with lung metastasis, and by the rate he’s lost weight I would guess he’s got liver metastasis as well, time is shorter than it used to be and he doesn’t want to spend it feeling sick from chemo. I don’t blame him.

I found myself in the role of patient advocate in October 2008. I took a day off work and traveled with my mother to Brenham, an hour and forty minutes or so away from Austin. We accompanied her father to a checkup visit with his oncologist.

Knowing the common medical terminology as it relates to breast cancer, I was in a better position than some to understand what the doctor said. It worked out well. I had questions. He had answers. I had more questions. He patiently explained options. Grandpa is hard of hearing and I had to remind the oncologist to speak loudly enough for his patient to hear. My mother and grandfather were happy that I understood the discussion because I could explain things again to them later.

Grandpa is also given to understanding things the way he wants to rather than the way it is. He showed his oncologist a newspaper article which said a recent study showed a decline in the benefit of colonoscopies after age 75 versus the risks of that invasive test. Grandpa proudly told the doctor the article said that tumors decrease in size after age 75. He thinks because he’s over 80 that his tumors will get smaller as he gets older. I know that tumor’s don’t shrink because you reach a certain age or because you wish them away hard enough. The doctor wisely nodded and smiled, and then winked at me when Grandpa couldn’t see him. I decided I liked Grandpa’s oncologist.

Twenty years. He had that stupid tumor on his chest for over twenty years and did nothing! He let an ignorant doctor at the VA tell him it was nothing to worry about instead of following his gut and insisting on proper testing. That’s the part I cannot fathom.

I’ve heard of two young women in the area where I live being put off by their family doctors because they were supposedly too young to get breast cancer. They were both Stage III by the time they were diagnosed. That makes me angry.

It also makes my point. We must be our own advocates when we can, and get help when we don’t know what we’re doing. We have to pay attention to our bodies the way we should pay attention to our vehicles, noticing changes and fixing issues before they turn into extensive repairs.

When you’re not sure how to be your own advocate, hire it out. Sometimes friends or family members can help us with that role. Sometimes payment is in hugs and kisses, and that’s just fine.

Next - 65 Sunlight Through a Glass of Soda
Previous - 63 Anti-Genetic Discrimination Bill

63 Anti-Genetic Discrimination Bill

2008-05-15T08:54:00.004-05:00

http://www.usatoday.com/news/washington/2008-05-01-genetic-discrimination_N.htm

The Senate approved it 95-0. On May 1, 2008 the House approved it 414-1. President Bush is expected to sign it into law and "it" is an anti-genetic discrimination bill. The lone dissenter was Republican Ron Paul of Texas. Boo, Ron Paul! What principle could you have been standing up for that would make you vote against this legislation?

What does this anti-genetic discrimination bill mean? Here is what I've read coupled with my interpretation through filters of personal experience:

It means that insurance companies would not be allowed to set premiums or determine eligibility based on someone testing positive for BRCA1 or BRCA2 (the BReast CAncer genetic mutation that severely increases the odds of getting breast cancer and ovarian cancer). It means that employers wouldn't be allowed to use that information to affect hiring or firing decisions.

It means our legislation is taking another baby step towards protecting people so that the fear of what discrimination does to the pocketbook is removed from the equation of whether or not to seek genetic testing. It means more people getting tested helps scientists determine links sooner. It means that organizations are finding some success with trying to fight cancer by using politics to remove certain blockades.

To me, this bill means another spark of hope for finding a cure sooner rather than later.

Thank you, activists, for keeping up the struggle to make a positive difference. Thank you, policitians in Washington, for voting for something that makes sense. Thank you, opponents of the bill, for being less organized or not as well funded so that you lost this particular battle.

Now, you put-the-profit-into-the-shareholders'-pockets insurance companies, stop throwing up the blockades to people taking genetic tests! We NEED to study the connections so we can learn more about cancer causation and we DON'T need your concern about money getting in the way.

As you might recall from earlier postings, I took the BRCA test and my results were negative. Like most people, the causation of my breast cancer remains a mystery because this particular genetic mutation is not behind it.

A special committee had to meet to decide whether my insurance company would pay for it or not. They took over a month to decide so that I had to get the necessary blood for the test drawn a second time. The original sample would have been valid material for the test, but the insurance company wouldn't approve using the original sample because it was drawn before the purpose for the sample was approved so I had to submit to getting my blood drawn a second time. Talk about stupidity and inconvenience to the consumer for the sake of red tape!

The cost of the test was $3,150, but I paid $0 because I had already maxed out my deductible and out-of-pocket expenses for the year. I had to call my insurance company to get it straight, however, because somebody initially misplaced the piece of paper that said the test had been pre-approved so the EOB statement I first received from my insurance company indicated that the entire cost was to be my burden and I had to investigate with an agent for them to make the connection and reverse that billing decision.

Still, with all of that drama, that was a stack of minor irritations compared to the rigors of chemotherapy.

As a cancer survivor, I'm pretty much married to group health insurance for the rest of my life now. If I ever decided to be self-employed I would find the cost of health insurance unaffordably high. If I ever allowed my group coverage to lapse for too long of a period between jobs, I would find any new breast-cancer related expenses denied for at least the first year of new coverage as it would become a pre-existing condition. I could rant about the general poor state of the insurance system in my county another day.

For the moment I want to complain about how the same insurance company that allowed me to get the BRCA test because of my relatively young age at diagnosis has rejected the requests of two of my co-workers for the same test.

One co-workers has been through breast cancer, a metastatic recurrence, and has a mother who is a breast cancer survivor. The insurance company doesn't think this mother/daughter connection is enough to merit paying for the test. She has a young daughter and they wonder if she has the genetic mutation and if she has passed it on to her daughter or not. I have a second co-worker who has had breast cancer. She would like to know if she has the mutation because she wonders whether to have her ovaries removed or not. That's a big decision and it's hard to make if you don't know your BRCA status. $3150 is a lot of money to shell out of your own purse, however.

Maybe with this change in legislation preventing insurance premiums from being used as a penalty for people who test positive, then maybe more people will be inclined to take the test. Maybe if more people get tested then the economic laws of supply and demand will kick in and the cost per test will go down. Maybe if the cost per test goes down then insurance companies will be less reluctant to pay for the test.

Maybe. If.

I'm not going to focus on how bitter I feel about these "ifs" and "maybes" probably not going anywhere anytime soon. I'm going to focus today on the glimmer of hope it gives me that enough somebodys cared enough to get this issue going a direction that will utimately help people. And if anyone knows a valid strategy for twisting the arm of an insurance company to pay for my co-workers' BRCA tests, please pass the tips along.

Angela

Next - 64 Grandpa Metastatic
Previous - 62 When Is It Over? Moving On

62 When Is It Over? Moving On...

2008-05-02T09:54:00.004-05:00

It's May 2008. There are SO many things I have thought to write about over the past year. I wonder sometimes if people still want to read about what I think now that I'm no longer in treatment. I'm not the brave soldier fighting for my life these days. I'm back in the ordinary world with commitments and deadlines. My family is my top priority now, rather than survival. Sometime it's still all I can do to make it through the day, but that's life with a 2-year-old.

I know that during the last few weeks of chemotherapy when I was truly sick of feeling like crap constantly and thinking how my initial diagnosis didn't scare me as much as it should have because I didn't know just how awful things would get, I was also dying to know from someone who'd been there how you live your life after treatment. I remember aching to ask a particular Pink Ribbon Cowgirl how she managed her fear of recurrence and the words never left my mouth. I was too timid to ask.

How do you define the "new normal" and how do you go back to living your life after cancer? Different people will have different answers. In case my answers are helpful to another fearful person, I've decided to record a few thoughts in the blog.

Part of taking care of myself is to set aside some time to do the things I enjoy - things that nurture the soul. So I arrange get-togethers with friends, plan the occasional surprise for my family, and I write poetry. Lately at work I have been designing databases. That may not sound like fun to most people, but it is a fantastic combination of left-brain logic mixed with right-brain creativity as far as I'm concerned, and I've had a ball this last week doing it.

I took time off work in April 2008 to attend the Austin International Poetry Festival (AIPF). My Radiation on a Rainy Day poem was accepted into this year's AIPF anthology. That was an honor. By taking time off from work to attend festival events on a Friday, I fulfilled a desire that I've denied myself in previous years. I also got to attend a poetry workshop that encouraged me to works towards writing more and performing more. When my son gets a little older I will seriously consider the performance part. Many thanks to Michael Guinn for driving down from Ft. Worth and hosting this workshop. The man is an AWESOME performer.

A fellow workshop attendee took me aside after the workshop. She, like me, had had a poem published in the anthology and we both read our anthology poems during the workshop. Her husband had gone through two boughts of prostate cancer so she could closely identify with the emotions expressed in my radiation poem. Michael Guinn had asked each of us during the workshop to talk briefly about our histories of writing poetry so I had mentioned that Radiation on a Rainy Day had come about after I attended a workshop he hosted on performing poetry last year.

His workshop in 2007 had had people write for 10 minutes about the first thing that came to mind. The first words of the workshop poem were, "I never knew I was so angry." As I worked on the poem, I realized that I had residual anger issues from having had cancer and from having been traumatized by the cancer treatments. Writing that poem helped me face those issues and heal, and then I reached a new place of balance from which Radiation on a Rainy Day was born.

The Breast Cancer Coalition of Rochester, New York contacted me shortly after the poem appeared in Women & Cancer magazine and they asked my permission to reprint the poem in their quarterly newsletter. Talk about feeling honored! Since my radiation poem has received more attention than anything I've written to date, I wanted the teacher who had inspired me to know what his workshop last year helped spark.

So this woman who has cared for her husband during prostate cancer and its recurrence approaches me and tries to pass along advice she considers to be a kindness. "You have to move on," she tells me. I started to explain to her that I have moved on, I think. I may have written a poem about radiation therapy, but it doesn't mean I'm still dwelling on the emotions and struggles of that point in my life. But there is too much to say in a paragraph or less to this stranger to properly defend this point of view.

As I briefly wonder if my participation in the Breast Cancer Resource Center's Champagne Brunch was some sort of subconscious attempt at not letting go of all the attention I got during the treatment days, she takes advantage of my silence to tell me that she's trying to help me by passing along this advice - her husband's conclusion. He apparently spent some time helping other newly diagnosed people and volunteering for the cause through some means or other, and after a while he decided that his life no longer revolved around cancer. It sounded to me that his way of putting his cancer battle behind him was to stop doing those things. He stopped being available to help others.

Hmmmm...

You know? Each person has to do what feels right to him or her given the circumstances. Some people throw themselves into anti-cancer causes and they make fighting cancer their new life's work. Some people hide their diagnosis, treatment, and cancer history from everyone they can and very few people know it ever happened. Some people volunteer heavily for a while and then burn out. The details are as different as the individuals, but we all have to figure out what we want and what we can handle.

I'm trying to balance and integrate my cancer experience with my life. If "moving on" means pretending it never happened, then I'm not ready to do that. If "moving on" means never writing poetry or essays that refer to cancer experiences or draw from the drama of that time, then I'm not ready to do that. If "moving on" means no longer making myself available to answer what questions I can of the newly-diagnosed or to comfort the people I meet who are in treatment, then I'm certainly not ready to do that. Also, my talents and abilities are needed by the BCRC to make this year's Brunch as much of a success (if not more) than it was last year. The self-esteem and confidence I gained last year from tackling and conquering those checkout logistics was something I really needed at the time. If "moving on" means walking away from that, then I'm not ready to go there.

At the same time, I would argue that I'm not wallowing in the fact that I've had to deal with cancer. (Notice how I'm no longer referring to it as "breast cancer" here? That's because I feel an attachment to the cancer community in general and not just the "breast cancer" or "younger-woman-diagnosed-with-breast-cancer community.") My husband will back me up on the part about not wallowing.

I'm haunted more by surviving a certain car accident than by surviving breast cancer.

So I drove away from that encounter thinking about what it means to balance a past trauma with life after the trauma. I thought about how I evaluate the levels of participation I'm willing to give. Anything that results in my missing dinner, bath time or bed time with my son is something I take seriously. I opted out of working on the Graphic fundraiser for the BCRC and the Pink Ribbon Cowgirls this year because it meant too many evenings away from my little boy. I plan to chair the same committee for the Champagne Brunch because they don't have a bunch of evening meetings. Also, the Brunch is more my style and pace. And by knowing my threshold for throwing myself into a volunteer project and not burning out, I know I can contribute something that matters and continue to have fun doing it, which means I'll probably continue to do it for years to come. We'll see. Any organization that relies on volunteers benefits best from volunteers who aren't flaky. I'm striving to commit to only those things with which I can follow through and not sacrifice my family or my sanity.

I also concluded through these musings that I am constantly evaluating and re-evaluating the cost of different projects to my family. My husband and my son are everything to me. Everything else is secondary. So I gauge my leisure and work commitments on how my family will be affected, and I extend myself or pull back based on whatever is going on at the time. My overall goal is to strike a balance.

I think balance is like steering a sailboat. You'll go off course eventually if you steer in a straight line. Instead, you must tack left and right and adjust constantly for shifting factors such as wind and waves. Over time your navigation leads you to a goal.

"Just get over it." Cancer is never far away from my thoughts. The fear of recurrence is something I struggle to control. I can't let it overwhelm me or else I won't be able to function. I shouldn't eliminate it or else I won't monitor my body for early warning signs as I should. So I have to strike a balance with this fear. I work to keep it within reasonable bounds and to not let it control me. It's kind of like the fear you feel driving in the dark during rain on an unfamiliar road. You should be cautious and aware, but not so uptight that you endanger others by overreacting.

Fear of recurrence helps me to make some decisions. For example, working late once in a while is fine. But if I worked late on a regular basis, keeping me away from my son, and if I were diagnosed with cancer again, would I look back over the last six months and regret how I had spent that time? The answer is "yes," so I don't work late very often. My boss doesn't always appreciate that attitude, but my son means more to me than my work.

For a couple of weeks after this conversation with the well-meaning poet, I found myself fuming all over again each time I thought about it. I don't believe that I have failed to "move on." I'm defining my life in the "new normal" the best way I know how, and I'm doing just fine.

I suppose that life will give us recurring opportunities to sample the ignorance or free advice from others and choose to accept, defy, or ignore them. The hard part is appreciating the intended kindness while not following through with the urge to tell people off or smack 'em up side the head.

Next - 63 Anti-Genetic Discrimination Bill
Previous - 61 Poetry and Other Things in 2007

61 Poetry and Other Things in 2007

2008-01-13T21:18:00.001-06:00

January 24, 2008

2007 held a lot of highlights for me. It was a year of ups and downs, as they all are -- and even a "normal" year would be incredible compared to the drama of 2006 (the year of my breast cancer diagnosis and treatment) -- but 2007 held a lot of special moments.

First, I'm still trying to figure out what my cancer experiences mean to me. Between 2006 and 2007, I learned new lessons and remembered old ones. I made many new friends and lost a couple of old ones. I gained compassion and ferocity and lost more of my innocence. I gave away time and energy and gained respect and loyalty. I also gained more self esteem, and saw the amazing power of love.

I'm currently still living with NED (no evidence of disease). I'm 22 months out of diagnosis and this is the second time the year has turned with NED still hanging around. I'm a big fan of NED and hope he remains with me the rest of my life.

VOLUNTEER WORK
I chaired committees for two fundraisers last year. Graphic was the April fundraiser for the Pink Ribbon Cowgirls of the BCRC (Breast Cancer Resource Center). September held the Champagne Brunch for the BCRC. Graphic was a new event so I was a part of the maiden voyage. It did well and I was proud but exhausted to have been a part of it. The Champagne Brunch turned out to be more my style and pace and I had a ball planning for my part in it. Chairing the committee for the Champagne Brunch was significant for me in work-related ways. It boosted my self-confidence that I could really take charge of a project and see it through. I set out to significantly reduce the amount of time people spent in line waiting to check out after the auction, and between my planning and the awesome volunteers who worked it, that goal was accomplished.

This experience was also incredible to me because I saw some of my ideas make a real difference in helping my part of the event run better. First I did what had been done before. I took the spreadsheet which listed all of the items and added lookup functions in Excel to connect it with the spreadsheet that listed all of the attendees. That enabled us to get our stacks of winning bid sheets and just key in the 3-digit bid numbers into the spreadsheet and the names of the winners appeared in the next column. Then I took it a step farther. I built a database in Access that used the spreadsheet as its source data. The database produced invoices of who won what, and then printed the invoices in alphabetical order by winner. It also gave us a master list so the BCRC knew how much money they needed to collect from each winner. Most people I know don't understand how this was fun for me, but it was great fun. I had a blast planning and designing it and anticipating the happy smiles from the BCRC staff. The day of the auction, I surprised their business manager with the master list. She promptly said, "I love you!" and gave me the hoped-for smile plus a hug. Yee-haw!!! And the feedback from people's wait times in line said that the average time people waited before paying went from 5-10 minutes to 1-3 minutes. SO cool!

It just goes to show that you don't have to contribute cash to make a difference in something that's important to you. We're in no position to donate money, but I gave time and found a way to use my organizational, analytical, software and accounting skills. I smile every time I think about the 2007 Brunch. I wanted so badly to make a difference, and I'm happy that I did just that.

THE MAKEOVER
It's January 2008 and my hair is still rusty-colored from the makeover last October 2007. It still looks like a pretty color even with an inch or more of my dark blond or possibly light brown roots showing. The memories of the makeover event are precious and sacred. It was a morning of pampering, true, but it also set the stage for spending a chunk of my day with fellow survivors. We swapped stories about our respective experiences. Our ability to look back on the trauma of losing our hair and going through chemotherapy was powerful stuff, because we talked about these painful events and laughed from our bellies about some of these things. I healed a little more that day because I could laugh at the image of a 3-year-old drawing pictures on his bald, pregnant mother's head. What an incredible experience! The owner of Bo Salon, Ron King, answered my question about why he offered these makeovers. He said that he wanted to make a difference in our lives. At the time I wondered what lasting difference a costmetic event could accomplish. Now I understand. It wasn't the hair and the makeup. He gave us the relaxed atmosphere for making memories. Beautiful, special, healing memories. Thank you Ron King.

TELEVISION APPEARANCES
I got to appear on local television TWICE!
KVUE - Live Interview With Quida Culpepper About the Makeover
News 8 Austin - Pre-recorded Story About Women Diagnosed With Cancer While Pregnant

The first opportunity came as part of the makeover. It was done live and I got to go to the television station for it.

The second opportunity came because I watched a piece News 8 did on the husbands of women with breast cancer and it moved me to tears. I did something I've never done before. I wrote to the television station. I suggested that they run a piece on women diagnosed with cancer while pregnant, and they did it! For this television appearance, a reporter and cameraman came to my home. We shot quite a bit of footage of me telling my story and they included two statements from all of that for the brief news piece. I was delighted and disappointed at the same time. They also filmed me playing with my son, which I liked, and the end of the story shows me kissing my husband. I liked that part too though Guy generally prefers to remain behind the scenes. That's why I have no photos of him posted on my blog (until today). Since the TV folks filmed at our house on a Sunday, we spent all of Saturday doing serious cleaning. THAT was awesome because our house looked ready for a party after they left.

The second television appearance ran once an hour most every hour for a day or so. They included the stories of two of my fellow Pink Ribbon Cowgirls and I was glad to help raise awareness. I was also amazed that someone would give sufficient credit to an idea I had for a story to actually run with it. Cool!

POETRY
2007 was a banner year for my poetry. For the most part, poetry doesn't pay well. I don't write or share poetry for money. I write poetry because it helps me express a creative part of my personality. Sometimes it helps me shake my demons out. I share it when I think someone will enjoy it or identify with it. When somebody connects with my cancer poetry I feel a mixture of pleasure and humility. I think it's good that I'm starting to write poetry about topics other than cancer, too. My latest poem is called "A Trip to Amy's Ice Cream" and I will likely post it on the blog site soon.

The Breast Cancer Resource Center used one of my poems (A Diagnosis of Cancer) in their 2007 Graphic event guide. That was an honor. Then they held on to copies of several poems to potentially use in their support groups. I know that one was used recently in a group meeting so that makes me feel great.

The "Radiation on a Rainy Day" poem has been especially popular. The fabulous Meg Heggie from Scotland posted it on her web site here. Since Meg lives in Scotland, she modified it slightly to spell certain words the European way since they came up wrong in her spell check. I got a kick out of that. Meg also honored me later in the year by writing a beautiful poem called Words for Angela that she dedicated to me. No one has ever written a poem for me before. Thank you, Meg.

I entered the poem in a contest, the St. Louis 48th Annual Best Poem Contest. It didn't win.

DR. LOVE AND MY PERSONAL STORY
My poem did appear, however, on the web site of Dr. Susan Love, the breast cancer surgeon whose book I read cover to cover (almost) and whose opinions I deeply respect. What I actually prepared for Dr. Love's site was my personal story and I based it largely on the introductionI wrote for my membership on the Pink Ribbon Cowgirls Yahoo group. That means that the "personal story" bit isn't really expressed the way I would have preferred to have told it. The poem came at the tail end of the rather dry remarks about my cancer journey. It wasn't the way I intended to tell my story, but the editor assured me that it would contribute to variety in how stories were shared on the site and she liked it. Oh well. Their web site was rebuilt last year and they did away with their poetry section. The appearance of my personal story actually catapulted me into showing up on Google. If you type in "Angela Patterson cancer" I have hits on the first two pages. It's pretty neat.

The other interesting event tied to my personal story on Dr. Love's site was that a different web site, Divine Caroline, lifted my personal story without my permission and without Dr. Love's site's editor's permission. They printed the entire thing almost verbatim and gave authorship credit to Dr. Love's site rather than to me. Had they asked, I would have given permission. Since they didn't, I complained to the editor at Dr. Love's site. She investigated and found that they had reprinted the stories of other women without permission. All of them were removed from Divine Caroline. This event was an example last year of how I learned to stand up for myself when I navigated the waters of cancer survival.

What also struck me was how one of my fellow Pink Ribbon Cowgirls felt inspired by seeing my story on Dr. Love's site and submitted her own. Katie's story humbled me when I read it. I was amazed at her spirit and inspired by her determination. Here was a woman I took under my wing once and met with to discuss her situation and soothe her fears, and she was thriving. I can't understand why some people remain cancer "victims" when the frame of mind to be a survivor is so much more rewarding.

MORE POETRY
"Radiation on a Rainy Day" was also accepted for online publication by CUREXTRA. I'm not sure how long that link will remain valid since it's linked to their current issue. Fortunately for me for now, their "current issue" is actually a quarter behind. It's the Fall 2007 issue so the poem still shows up online.

What really made the year rock, however, was seeing my poem in print for the very first time in Women & Cancer magazine's Winter 2007 issue. You have to have a subscription to see it online, but here's a link. I have a handful of copies of the magazine at home and I've been smiling over this for several weeks now. I've never had a poem printed in a magazine before, much less a magazine that has a national distribution with a group of people (cancer survivors) I care so much about.

This has been the most personal way for me to "pay it forward" and touch people. To put myself out there, to expose this part of myself through my poem and say "I've been there, survived that, and it was rough but I'm still here" and have someone write back and let me know that it mattered has been incredible, and emotional, and awe-inspiring.

CALENDAR
Kelric and I were photographed in 2007 by Houston photographer Alisa Murray as part of a calendar of Austin-area breast cancer survivors and their children. Our photo appears in the 2008 calendar called Hope & Inspiration. It can be purchased online at http://www.setonfund.org/?nd=full&key=24&data=data&view=1. Proceeds benefit the Shivers Cancer Center at Brackenridge Hospital. Unfortunately, this link only shows the cover of the calendar, not the page where Kelric and I are. Our photo is in October 2008, which is Breast Cancer Awareness Month. I love that.

WRAPPING IT UP
Now we're on to 2008. I've been a survivor for 22 months and so far so good.

My boss asked me once why cancer survivors tend to make such a big deal over being "survivors." He let me know that he had had no experience with cancer, either personally or through family members who he was seeking to understand. I explained that fighting cancer is a traumatic experience. Your body has betrayed you by creating cancer. That creates a feeling of helplessness. Then you endure the treatments to fight the cancer, which usually involve surgery of some kind. That's invasive. And then in my case there was chemotherapy and radiation. Your once-familiar body becomes a stranger during chemotherapy. It doesn't heal well from injury. Simple sicknesses become potentially very dangerous. The side effects are weird and they change all the time so you don't know what to expect from one day to the next. Radiation gave me lasting changes such as brittle bones and decreased lung function. Let's not even go into the financial pressure from medical expenses and lost wages. All of these events add up to equal a deeply traumatic experience and it can be difficult to get past it. If you do get past it, you've really survived something significant.

That's why cancer survivors tend to latch on to that word "survivor" and revel in it.

As I began to say in the opening of this post, I'm still trying to figure out what it means to me to find myself a cancer survivor. Cancer took a lot from me. You won't find me expressing gratitude for the "second chance on live that cancer gave me." Cancer didn't "give" me anything but grief and pain, but I'm continuing to discover what I chose to "take" from the cancer experience.

Improvements in self-esteem and the courage to stand up for myself are part of it. Humility and compassion are part of it. A certain amount of fearlessness is part of it, too. I still look at my son sometimes and start to cry, fearing that I may die while he's young and fearing that something may happen to take him from us. It's part of life, I think, that you learn about the bad stuff and find a way to live without letting that fear strangle you. That lesson transcends cancer and extends to any difficult, life-threatening, or traumatic event that doesn't kill us.

Thank you for reading my blog and my lengthy postings.

Here's to a fabulous 2008!

Angela (the Pink Tiger) Patterson

Next - 62 When Is It Over? Moving On
Previous - 60 E-mail: the VICTORY of November 6, 2007

60 E-mail: the VICTORY of November 6, 2007

2008-01-13T21:10:00.002-06:00

I managed to annoy at least one of my friends with this e-mail. I rarely spout my feelings about political matters to people but in this case made an exception when I sent the e-mail below to friends and family. It cost me a friendship. On the other hand, the only two other people who wrote to me with differing viewpoints did so respectfully and they got my attention. Inspired by one person's concerns, I looked up public records on Proposition 15 for myself and found useful information on state government web sites, including the exact wording of the bill. What struck me as especially interesting is that recipients of funding from the Cancer Prevention and Research Institute of Texas, the cancer research institute this state constitutional amendment created, must match the funding they receive dollar for dollar so it's not a free ride. I like that. I worry about the increase of debt to the State of Texas, but I worry about dying from cancer more.

Here are links if you want to see what I saw online.
The actual wording of the joint resolution, compliments of the Texas House of Representatives

Bill Analysis

Several official documents posted on the Texas Legislature Online website on HJR90 (House Joint Resolution 90), as the bill was called before it was put to the voters as Proposition 15.

House Research Organization Bill AnalysisThis document specifies what the Cancer Prevention and Research Institute of Texas is supposed to do and how the state intends to fund it. It records points of view of both supporters and opponents of the bill.

I suppose with the accessibility of the Internet I'll get to annoy a whole new group of people with the posting below, but that's not my intent. This blog records my thoughts and experiences with things related to my breast cancer journey. Proposition 15 is relevant and bears mentioning.

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Proposition 15 passed! Thank you, voters of Texas!

November 6, 2007, the night of the election, I checked voting results online just before bed.

First I found a link for Travis County which is where I live. All the votes had been tallied and turned in and the results shocked me. It was a very close call, with fifty-something percent FOR and forty-nine percent AGAINST. Against?! How could people vote against the cancer bill? I had a co-worker give me a chance earlier that day to convince him why he shouldn’t vote NO. He said that he questioned why the State of Texas should take on this tremendous $3 billion burden of debt to fund research for cancer which affects people worldwide. “Shouldn’t it be a national initiative?” He asked. I pointed out that national funding for cancer research had been cut this year by our president.

If it benefits the world, shouldn’t the world pay for it? Why should Texas pay for it? This is what he wanted to know.

I told him that Texas pays $30 billion each year in direct and indirect costs related to cancer. Spending $300 million a year for 10 years is an investment in eventually lowering that outrageous expense. As I drove home I thought of other reasons. A tsunami hits India and America pours money and time into helping the victims. Earthquakes devastate other parts of the world and Americans are there giving money, time, and precious resources to help. We don’t always have a clear political or monetary gain inherent in these outpourings of love and support. Sometimes, despite the many faults of this county and its people, we do the right thing, the nice thing, because some of us are humanitarians and we can’t sit by to watch people die when we can prevent it.

I read that the State of Texas has a low amount debt, all things considered. We can afford this. There are people out there with innovative, useful, potentially life-saving ideas that have been approved by the American Cancer Society and all they need is funding for their research. I know that a well-funded organization can get more done than a poorly-funded organization. Check out the IT department of a mid-sized company with money versus a tiny office that’s just making it and you’ll see a vast difference in the sophistication of software and hardware. I figure scientific research probably operates the same way. Throw more money at the problem and you get a faster solution, or a better solution, or a crazy idea that leads to the best solution years sooner.

That’s what I want, because cancer is everybody’s problem; I want the mysteries of causation and cure to be unlocked NOW so my son doesn’t see his friends, family, co-workers, and their friends, family, and co-workers suffer at the hands of this multi-faceted, insidious killer disease.

I caught a cold that turned into a sinus infection recently. As I waited to see the doctor (after being sick a week and a half already), I started making a list of all the people I could remember who had had cancer. Most of the people I know or heard of have come to my attention only in the last two years. I didn’t include celebrities. I didn’t include my fellow survivors in the Pink Ribbon Cowgirls. Instead, I included my Aunt Jerry who died of breast cancer; her daughter, my cousin Lesley, who had an early form of breast cancer; my Uncle Kenneth (spouse of Aunt Jerry) who has recently been diagnosed with lymphoma; my grandfather who has breast cancer and has decided not to do a thing about it. That takes care of the family members I know about. Then there’s the lymphoma patient I met at the gym long ago during treatment when I was working out. There are six co-workers who come to mind. There’s the father of my friend Kim; the father of my friend Rebekah; the mother of one of my survivor co-workers; the sister of one of my survivor co-workers; the wife of co-worker’s Karen’s cousin who died a couple of weeks ago of breast cancer. She was in her 30’s and left teenaged children behind. There’s the sister of consultant Ken whom I’ve collaborated with on a project at work; the father-in-law of friend and former consultant Adam; the mother of former boss Melinda; my brother-in-law Richard; the guy who rear-ended my car last year when Guy and I were on our way to breakfast before chemo – his mother died of cancer.

I think you get the point. I have 32 people on my list and I keep remembering more.

That’s insane!

So Travis County’s votes were almost evenly split with the FOR votes just barely edging over the AGAINST votes. Then I tried a different link and found statewide results. At the time I went to bed only 72% of the counties had reported final results, but the total votes FOR Proposition 15 were 60.96%.

I saw that winning percentage of votes FOR the proposition and my throat tightened up. Before I knew it tears were running down my face and I was silently sobbing. Ever the analyst, I wondered why I was crying. This was a HAPPY moment! What were these tears about?

I thought of how people get so happy at weddings that they cry. I’ve done that before. Winning Proposition 15 was like getting word from a surgeon that your loved one came out of a risky surgery with flying colors and is expected to pull through. I sat in my chair for a few minutes, just sobbing, reaching for one tissue after another as tears streamed down my face. And I smiled.

There was one other emotion that was threading through the relief and the happiness: Hope.

For the first time, I felt hope that we can find a cure for at least some forms of cancer sooner rather than later. I didn’t realize I was so thirsty until I was handed this drink.

I calmed down, turned the lights off downstairs and went up to bed. As always I checked on my son first – my little angel who may grow up in a world that’s fighting some other number one killer because cancer by then has been tamed. I went into our room and saw that my husband, who had gone to bed early, was deeply asleep. I listened to his quiet, rhythmic breathing and smiled as I turned out the last light. Hope wrapped me in a warm blanket as I drifted off to a restful sleep of my own.

Angela

I later learned that the co-worker who asked me why he should vote for this bill was actually persuaded by my arguments and voted FOR it. Wow!

Next - 61 Poetry and Other Things in 2007
Previous - 59 Things a Happenin'

59 Things a-happenin'

2007-10-16T22:00:00.002-05:00

Tuesday, October 16, 2007

It's October, Breast Cancer Awareness Month, and exciting things have been happening for me lately.

First, my personal story was published on Dr. Susan Love's web site mid-September. That was exciting. I spent a lot of time reading all of the stories of other women when I was in treatment. It gave me encouragement to know that I wasn't alone out there. Now I get to be one of the people giving the encouragement and I'm thrilled.

http://susanlove.com/breastcancer/content.asp?L2=7&L3=3&SID=233&CID=1266&PID=82&CATID=0

Several women have written to me since the Dr. Love posting came out. It never ceases to amaze me how good it feels to have complete strangers reaching out like that. And for the moment I can type "Angela the Pink Tiger" into Google and my blog is the first hit. That's new!

The last weekend of September I participated in the 12th Annual Champagne Brunch and Silent Auction which benefitted the Breast Cancer Resource Center. I was the committee chair of check-ins and checkouts. I had a grand time planning and organizing the details of my committee's participation. With thorough preparation, a great spreadsheet/database setup that produced invoices, and phenomenal volunteers we had the best year ever with respect to smooth checkouts. It was a lot of work and a LOT of fun!

This month, I was fortunate to be one of five women from the Pink Ribbon Cowgirls to receive a free makeover from Bo Salon. The makeover was last Monday. They colored my hair red! I have never dyed my hair in my life so this was quite the interesting experience! And then they put tastefully done makeup on my face. I thought the lipstick was a bit strong but I liked the overall affect with the rest of it. I didn't like it enough to start wearing makeup all the time, but it was fun for the day.

Local TV station KVUE filmed before and after shots of all five of us.

The makeover also included a free manicure for me. Some of the girls chose manicures and at least one of us opted for a body scrub instead. I decided that I didn't care for the nail polish thing. I damaged it almost immediately and chipped it even more doing dishes that night. Painted nails are not for me, but it was fun trying.

We also all got a free appointment with dermatologist Ted Lain of Steiner Ranch Dermatology. I think we all did Botox. One or more of us got a filler, too. Botox lasts for 3-4 months and a fill lasts for 12 months. I didn't do the fill but I'm regretting the Botox. Botox eliminates wrinkles by deadening the muscles that cause the wrinkles. The muscles between my eyebrows are nicely quiescent and smooth these days so the wrinkles are gone, but every time I want to crinkle my brow to express sympathy or frustration I find that it no longer works. It's weird! I'm glad that will wear off in a few months.

Also, I'm going to be on local TV in a few weeks. Saturday, October 27 I have a slot to appear live on KVUE's morning news show between 8:30 a.m. and 9:00 a.m. (That's channel 4 in Austin, Texas.) My fellow Pink Ribbon Cowgirl Donna will be with me. We're both going to be interviewed about the makeovers and our breast cancer experiences. All five of us have appeared or will appear in these staggered newcasts. They want us to spread the word about the importance of self-exams but I'm tempted to plug the importance of voting for Proposition 15 in the upcoming November 2007 election (in Texas). Proposition 15 is a constitutional amendment that would allow state funding of cancer research for $30 billion over the next 10 years. It's also a topic I wish to say a great deal more about so I will save that for a near-future blog entry.

The makeover was truly a wonderful experience. They treated us so well at Bo Salon. I got a new hairstyle that I love. The owner Ron King strikes me as a genuinely nice person. I'm not often starstruck by people with power or who know famous people, but I was suitably impressed when I learned that Mr. King did the makeup of Victoria's Secret models at a recent fashion show. I know that Victoria's Secret is extremely selective with who participates in their shows and only the best of the best are considered.

I am grateful to KVUE, Ron King of Bo Salon, and Dr. Ted Lain to have been one of the recipients of this wonderful opportunity.

My friends with red hair have indicated so far that they love my new hair color. I can't afford to have it colored again anytime soon so I've grown fond of saying, "I only have a few weeks to look this beautiful." I liked my original hair color so I don't mind going back to it, whatever that was. I used to be dark blonde but now I've accepted that my post-chemo hair color was actually light brown with copper highlights. Now I have a style I can take to my usual awesome stylist Diana Vicars and say "make it look like this, please." That reminds me, I need to get my husband to take more pictures of the new 'do' while it still looks good...

One last cool thing coming is my poem "Radiation on a Rainy Day" appearing in the upcoming winter edition of Women & Cancer magazine. I am very excited about that. This marks the first time one of my poems has been published by a nationally distributed magazine.

I've written one or two new poems that might be suitable to share, but finding the time to type them up is another story...

On a sad note, I've learned of two more women peripheral to my circle of friends and acquaintances who have been diagnosed with breast cancer. One woman is the friend of a friend. One is the sister of a consultant I work with. Another one of my Pink Ribbon Cowgirl friends has had her cancer return as Stage IV - metastatic. It saddens me that breast cancer hasn't stopped claiming new victims. I know that statistically it will get around 212,000 of us this year, but the cost of all that human suffering is more poignant when you know more of the players. One of my great uncles was diagnosed recently with lymphoma, so I know yet another person touched by cancer. That's why I feel so strongly about people voting for Proposition 15; it's a chance to make a real difference in the war against cancer.

I still get paranoid whenever I get a headache. I had my checkups in early October, including another mammogram. Things look good so far. Here's to hoping it stays that way.

That reminds me...I thought it would be nice to repeat something the dermatologist asked me. He wanted to know how my cancer experience has affected my life. I gave it some thought before answering. I told him that after my brush with breast cancer I feel more fierce. I thought of my "pink tiger" persona for the blog name and decided I had chosen an apt mascot.

I feel fierce about protecting my son, about protecting my right to spend time with my family (versus piling up overtime at my job), and about doing little things as I can afford the energy to fight cancer. I thought more about his question, though, and gave a second part to my answer. Part of me feels more vulnerable now, I told the doctor. I know from experience that my body can do nasty things on its own like grow cancerous tumors and I may not even be aware of them for quite some time. That's scary stuff.

My adventures with cancer have heightened my appreciation for my life - every day of it. My son is a toddler now and his language skills are exploding. Every week he learns new words. Every day he changes just a little bit. It's exciting to see him growing and healthy and learning so much. It's also frightening how quickly time passes.

Kelric is 19 months old now. I've been a survivor for 19 months. Will I see him grow up? Will I still be here in 5 years, 10 years, longer? I want to hold him and freeze these moments in time so I can savor them slowly. My heart aches with longing to be home with my little boy more often than weeknights and weekends. Life intrudes, though, with pesky financial obligations and flying minutes that pile into lost days. My obligation to myself and my family, I believe, is to be aware of those minutes and to actively love all I can and savor what I can as time goes by.

So that's what I do.

Fierce. Vulnerable. Loving. Savoring. Strong and nuturing. I am Woman. Hear me roar.

Angela

October 27, 2007

Here is the link to the TV interview.

Next - 60 E-mail: the VICTORY of November 6, 2007
Previous – 58 E-mail: Pink Pearls of Wisdom

58 E-mail: Pink Pearls of Wisdom

2007-08-10T21:05:00.000-05:00

August 10, 2007

Last weekend Kelric and I had our picture taken for a calendar of breast cancer survivors and their children. The Houston-based photographer Alisa Murray asked calendar participants to bring along a one or two sentence quote for the calendar, a written copy of our cancer stories, and any nuggets of wisdom we would like to pass along to the newly-diagnosed. The last part is something she is thinking about collecting into a booklet to be distributed at M.D. Anderson in Houston and she is toying with the name Pink Pearls of Wisdom. I think that’s a clever name.

Well you know me. Once I got started writing I found it hard to stop. I started with one page and ended up with three.

This evening it hit me that making my contribution to the Pink Pearls of Wisdom available via e-mail and my blog might do other people some good. If you’ve read all my other posts you’ve probably heard all of this stuff before, but the project for the photographer summed things up nicely. Here is what I gave the photographer just in case you learn about someone newly diagnosed and you feel it appropriate to pass this on.

One of the “pearls” mentions the organization Wonders & Worries which is strictly an Austin agency (for now), but pretty much everything else is universal “wisdom.”

I’ll let you know when the calendar becomes available.

Love,
Angela

What does it mean to you to be a mother who survived breast cancer?
I was 36 weeks pregnant when diagnosed so life before breast cancer means life before my son was born; that makes life as a survivor twice as sweet.

My Story
When I was diagnosed in March 2006 I was 34 years old and 36 weeks pregnant. My son arrived 10 days after diagnosis and I started chemo when he was two weeks old. Through 8 rounds of dose dense chemotherapy and 33 days of radiation, my husband and I learned to take one day at a time and to be patient with one another’s exhaustion. Having a baby in the house during treatment made dealing with treatment harder because I rarely got a chance to rest properly. On the other hand, having a baby in the house during treatment made treatment easier because I had a reason to smile every day no matter how awful my body felt. I have entered my second year of survivorship and so far I’m doing great. I am not grateful at all to have had breast cancer, and yet I gained a new love for humankind because people all around me showed how wonderful and kind people can be. I wrote poetry and essays to cope with and to record my experiences. Those are posted at http://angelathepinktiger.blogspot.com. My baby is now a vivacious toddler and my husband is an even closer best friend (and an awesome father).

Pink Pearls of Wisdom for the Newly Diagnosed
Take someone with you to medical appointments. That second person will hear thing you’ll miss or forget or won’t be able to process at the time, and the conversations you’ll share later about what the doctor told you will be comforting and helpful.

Keep a list of questions to ask your doctor during your next appointment. Take this list with you to the appointment.

Ask questions until you feel comfortable with how much you understand. If your doctor already explained something and you didn’t quite get it, then ask to have it explained again. The good doctors don’t mind doing this. Treatment is tough. It goes a little smoother when you understand what is going on and why.

Find the kind of doctor you like. If you want the doctor to make all the treatment decisions for you and just tell you when and where to show up, then there are doctors like that. If you want your doctor to include you in the treatment decisions and to discuss pros and cons of different approaches, then there are doctors like that. If you don’t feel comfortable with the person in charge of your treatment, then it will be hard to be satisfied with whatever treatment you receive.

You deserve to get treatment from compassionate people who treat you with respect. You have a right to switch doctors, switch lab facilities, and/or switch cancer centers if you don’t like the way you have been treated.

It is your responsibility to review your medical bills and ask questions about thing you don’t recognize or understand. The cancer center will bill your insurance with the standard codes they always use and your insurance company will process whatever they receive. Neither party is looking out for your financial best interests so they won’t suggest that you could save money by having lab work done at a different lab or that certain things could be combined under a single co-pay. You can call your insurance company to learn the guidelines and then you can ask your doctors to work with you on where things are done. People will go out of their way to help if you are patient and polite.

Most medical facilities are willing to work out some kind of payment plan with you.

Blogs and e-mail lists are a good way of communicating with all those people who care about how you are doing. It cuts down on the phone calls where you end up explaining the same things over and over.

Ask someone to be your “volunteer coordinator” for the people who offer to help. That takes the stress off of you while organizing the assistance people are willing to provide.

When people offer to help, let them. It makes them happy to feel like they are a part of your support network by providing meals or cleaning your home or mowing your yard. It eases the strain of daily life when someone else does certain things. People often want to help but don’t know what you would value most. Tell them what you want or need. They will become woven into a tapestry of support that will color the treatment days with bright spots if you let them help you.

Some hotels offer discounts for family members who have a loved one in the nearby hospital. Some hospitals like M.D. Anderson have a list online of the hotels that offer discounts. Ask your hotel if it gives a discount.

Special clothes exist to hold the drains that come after a mastectomy.

Occasional pain is normal after your treatment ends.

Depression is normal during and after treatment. Tell your doctor. Some drugs help fight depression. Find and tell your nutritionist. Some supplements help with depression and might work for you instead of prescription medication.

Seeking professional help for depression is part of taking care of yourself. It is part of recovery. If you need a therapist, go see one and don’t feel ashamed about it. Cancer treatments are rough, and they often cause trauma and grieving. Help yourself with this phase of healing if you need the help.

For short term and long term disability, your options are wider than “all or nothing.” You can do part time disability and it is also protected under the Family Medical Leave Act.

Www.quackwatch.org is a good site for dispelling cancer myths.

The American Cancer Society (www.cancer.org) has a booklet and part of its web site dedicated to safe food preparations and eating guidelines during treatment.

Remember that our society doesn’t teach people how to get through grief or how to support someone who is grieving. Be patient with people who care but manage to step all over your feelings during this difficult time. Help them support you by telling them what you need. If you need them to listen without interrupting or soothing you, tell them that. People aren’t taught how to listen. Help them learn.

If children are involved, seek guidance from a group like Wonders & Worries (www.wondersandworries.org) so you know how to talk with them about cancer. Honor the children’s place in your family by including them in the journey towards your recovery.

The Lance Armstrong Foundation (www.livestrong.org) can put you in touch with local resources to help you along your journey through treatment and recovery.

If someone is coming from out of town to help care for you during treatment, prepare maps or instructions for finding common places such as the grocery store before your caretaker arrives. You won’t feel as much up to the stress of thinking through road directions for an out-of-towner once you are fatigued from treatment.

If you are interested in preserving your fertility after treatment, then the time to act is before treatment. Fertile Hope (www.fertilehope.org) is an organization dedicated to this end. Chemotherapy can bring early menopause, prematurely ending your reproductive options. Doctors often forget to discuss this aspect of your future life after cancer while they are focused on saving your life right after diagnosis. Ask questions. Seek answers. Make informed decisions.

You know? I think that last one bears repeating in a line all its own.

Ask questions. Seeks answers. Make informed decisions.

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57 E-mail: lessons, anniversaries, and memories

2007-06-03T20:32:00.000-05:00

June 1, 2007 (almost 15 months after my diagnosis)

Listening
I have been rereading the book Kitchen Table Wisdom by Rachel Naomi Remen, M.D. and I find it is as effective a guide for helping me understand the emotions of cancer treatment and survival as Dr. Susan Love’s Breast Book helped me understand the science of breast cancer. Page 64 of Kitchen Table Wisdom contains the following quote.

Cancer had changed his life. He now lived so far beyond the usual, the normal, the ordinary in life, that he often felt alone. Many people did not want to hear about how it was with him, or couldn’t understand things that had never happened to them. Some were so upset by the pain of it all that he felt the need to protect them from it through his silence.

When my friend Brian Goldberg died suddenly the summer before my junior year of college, I coped in part by telling anyone who would listen what a kind and wonderful person he was. My roommate in the spring semester was so moved by my stories that she expressed regret she would never get to meet him. My boyfriend, who had been Brian’s best friend in high school, unkindly shut me down when I talked about Brian to him. He had no patience for my pain. He had too much pain of his own and preferred to bury rather than express it.

My husband, my soul mate, was a rock for me during the days of my cancer treatments. I could tell him in excruciating detail about the trauma and humiliation of what I was currently enduring and he would let me talk until I was done. Then I’d cry, he would hold me, and I would feel much better. Allowing my tearful confessions helped me heal and enabled me to face the next day with renewed courage. Once in a while he would share his own fears and I would feel honored. I didn’t always cry alone.

I think one thing you can do that is very important when someone you care about is coping with tragedy or a serious illness is to listen until they are finished talking about the part they feel ready to share. If they can bear the pain of the experience, and they trust you enough to share those memories, then you should bear the pain of hearing it described. Don’t shut them down with platitudes about how things will be better in the end. Acknowledge what they’re going through right now. Agree that it’s awful and unfair. If you’ve been through the same thing then it is okay to say, “I understand how you feel.” If you haven’t been through the same thing, then it is better to stick with, “I cannot imagine how difficult this must be for you, but know that I’m here for you and I’ll do whatever I can to help.”

Listening to people talk without brushing away their pain is challenging to do, but that action expresses your love and concern more eloquently than any words of comfort.

I learned eventually that not everyone cared to listen to my Brian stories, and I eventually stopped telling them. I applied that lesson of caution when talking about my cancer experiences, trying to balance my need to heal by way of sharing with not wanting to bore my audiences. I scanned people’s faces for the telltale glazed eyes and I quickly wrapped up whatever I was saying if I thought their attention wandered at all. I think I did a good job last year of distinguishing people who asked, “How are you doing?” out of the illusion of politeness from the people who asked it because they really wanted to know.

I suppose that is why support groups and social groups like the Pink Ribbon Cowgirls play an important role. The common thread of battling the same disease makes it interesting to hear one another’s war stories. I experienced this recently at a girls night out gathering of Cowgirls. We sat around a dinner table and shared stories from our treatment days. I told about events I had previously recorded in my writings. I thought that my complications like the blood clots in my arm and my hospital-worthy infections during chemo were standard treatment adventures. I found myself the temporary center of attention of other women who had been through their own unique treatment hell, and yet they were riveted to my stories. I’ve been in the group a year and thought I was old news, but these were new people and I realized none of us knew much about the specifics the others had endured. It healed something in me to have them as interested in my stories as I am in theirs.

While I’ve made it through my first year of survivorship and most people just want to hear how I’m now healthy and doing fine, it is nice to confess to certain people that now and then everything is not fine. Now and then something reminds me that just a scant year ago I was in the middle of something dramatic, painful, difficult, and grossly unfair. I’ll spend a day feeling spooked and then I’m okay again. I think it’s okay to be afraid of recurrence and metastasis as long as I don’t live in deep constant fear.

The various anniversaries I’ve reached this year surprise me each time with the memories they bring up.

Memorial Day
Case in point, my 14-month-old son was sick over Memorial Day weekend this year. We dosed him with Motrin and comforted him in the middle of the night and I reflected how grateful I was to be at home with a sick child and not at South Austin Hospital. A year ago on Memorial Day weekend I spent a night in the hospital because I had caught an infection and with my chemotherapy-depressed immune system my 102 degree fever had become dangerous. I couldn’t stop throwing up and my fever was creeping higher.

I will never forgive the nonchalant attitude of the hospital staff who took their sweet time preparing my room while I waited in the hall, slouched in a wheelchair because I was too weak and nauseous to sit upright. They joked with each other at the nurses’ station and ignored us while my husband worried that I was going to die. The vomit in the tray I held as I sat in that wheelchair was green and smelled nasty. Where does green stuff come from a body that lost the movie popcorn and soda hours ago and hasn’t held anything down since? My oncologist was my champion that day as he came in person to the hospital to check on me. A lazy worker said the room was ready except they were out of clean sheets for the bed. She wanted to wait for Housekeeping to bring fresh sheets before anyone made my bed, but my doctor pressured her to go one floor down and get the sheets herself. Meanwhile I held my tray of nasty green stuff wanting nothing more than to lay down anywhere. The floor would do. It was the beginning of a long night of nobody listening to me or properly caring for me. I was helpless to stand up for myself the way I usually do and once my doctor and husband left I felt vulnerable and frustrated as well as sick.

I remember that experience and inwardly shudder. It’s ancient history now, but it was a traumatic event at the time and it left scars on both me and my husband. He lay awake all night that night grieving the possibility of losing me. We considered later that my being in that hospital on that night was probably a risk to my health. Fortunately for me at the time I didn’t think things were that serious. I was awake much of the night because joint pain and a room set at 80 degrees made it tough to sleep. The fluids from the IV helped to restore what fluid and nutrients I had lost and maybe there were antibiotics involved. Nobody seemed to know anything to give me a straight answer, but by morning I was well enough to go home and I refuse to return there ever again.

Guy’s Birthday
For another memory of last year’s trauma, Guy’s birthday on March 29th last year was Kelric’s original due date. As exciting as it was to have Kelric born on March 13th which is my favorite great aunt’s birthday, we were sad that he had to be delivered early for my sake. Guy had looked forward to sharing a birthday with his son during the whole pregnancy and the last minute change of plans was a loss he spoke of several times to me.

We celebrated his birthday last year with a dinner out. My mom watched Kelric and I ate an entrée with feta cheese. Feta is on the list of foods to avoid for people in treatment because the natural bacteria it contains can challenge a compromised immune system. Guy’s birthday last year was the night before my first chemotherapy infusion so my feta cheese felt like the last meal of the condemned. This year we ate out with Kelric and I was so proud of myself because I realized his screaming “Me! Me!” meant he wanted one of the balloons we passed on the way in. Kelric got a balloon and was happy. I bought Guy a chocolate silk pie and we went home exhausted by our son but happy about the pie.

My Birthday
My birthday on May 9th last year fell two days before another round of chemo. I had lost my hair by then, knew that chemo made me miserably nauseous, and grew more anxious about the next treatment as it got closer. This year I had lunch with my staff and dinner with friends. This year was wonderful. I expressed gratitude to my friends that I had made it to age thirty-six. I grew melancholy when I wondered if I will live to see my son turn ten. Ten! Let’s not stretch for 20 or 30 or 40 yet. One decade at a time here…

That shouldn’t be a fear for any parent whether she will live that long or not, but I’m only one year out from a diagnosis of a disease that kills around 40,000 people in America each year. I still have the first critical five years after diagnosis to get through before I can relax a little. One down; four to go… If I don’t have a recurrence in five years it doesn’t mean I’m cured, but statistically it will mean I’m a lot less likely to battle breast cancer again.

My friends and husband quickly reminded me that treatment and early detection are so good these days that breast cancer is one of the more survivable diseases out there. That made me feel better. The day after my birthday I was no longer melancholy at all. I was back to my busy life and cancer fears were once again pushed to the dark corners where they belong.

Talking to people who listen and who remind you of the good things keeps the mind working towards the direction of healing and away from the depression of stagnation. I suppose that statement applies in broader ways than cancer treatment-based trauma. It seems I’m learning new lessons all the time. Sometimes I listen well enough to remember them.

Angela

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56 POEM: Radiation on a Rainy Day

2007-05-02T20:31:00.000-05:00

It drives me nuts how the blog doesn't preserve the formatting of my poetry. Every other line is supposed to be indented to make it easier to read and to separate the images. I have tried inserting spaces to manually create the indentations and the blog software keeps ignoring them. So just pretend it looks pretty, okay? --Angela

Radiation on a Rainy Day

Lazy summer rain kisses pavement
as I walk from car to gantry.
I know where shade on any other day
will have wandered by the time I leave.

Enslaved in the ritual, I brave the rain
to enter a room bathed in shadows.
Soft lights, gentle music, and hard science await
with a table on rails and monstrous equipment.

Today’s technicians position my body carefully,
referencing doctor’s orders.
They retreat behind thick walls. Watching. Listening.
Exposed, I cannot hide. I must lie very, very still.

The gantry responds with alien grace to computer programs
tailored to my body, my shape, my former privacy.
A buzzer warns of piercing rays and I lie very, very still,
imagining the day when I can leave and stay away.

Free at last – until tomorrow – I chuckle at people
hurrying through cold rain to my exit.
Last year I’d have sported an umbrella, knowing full well
hair would wilt despite ample gel and spray.

A smile shines behind my eyes because velvet fuzz
has grown into baby fine softness, half an inch long.
Too short to style, this is a different kind of freedom.
No need to hurry or worry about umbrellas today.

Instead, I slip through the falling sky towards my car,
naked face upturned, defiance and acceptance dancing through my thoughts.
A moment of optimism catches me and with moisture in my eyes
I finally sense a glimpse of sunshine to come.

Written by Angela Patterson
Copyright Angela Patterson 2007

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55 E-mail: April mammogram

2007-05-02T20:27:00.000-05:00

Sunday, April 29, 2007

I had a mammogram on April 10. April is my annual spot on the calendar from now on to get my digital mammograms. I went back to the facility at St. David’s and once again had a good experience with the sensitivity and kindness of their staff and the effectiveness of their equipment.

There was “nothing suspicious” to spur further investigation, and my radiologist’s written report says “normal” so I can breathe a sigh of relief. I never thought it could feel so good to be normal. I didn’t even know how stressed and worried I was that there would be bad news until I let out the figurative breath I’d been holding.

So for my one-year mammogram after cancer, I appear to still be cancer free. Hooray!

The radiologist recommends I return in six months to take another shot of the breast that had cancer. This is normal and in line with what they did last year.

So the question becomes, how many of you are 40 or older and haven’t gone for your annual mammogram in longer than a year? For you men, how many of your wives or partners have put off getting a mammogram? Yeah it’s inconvenient and uncomfortable, but the discomfort only lasts a few moments per image and it’s less invasive than a pap smear. I know a handful of women who told me during my treatment days that they were inspired by my experience to get their mammograms done. Now I’m the little sister wagging her finger. Take care of your health, loved ones, even if it involves discomfort and inconvenience. It’s worth it.

Love,
Angela

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54 E-mail: one year of survivorship

2007-04-09T21:07:00.000-05:00

March 3, 2007

Our son will turn a year old on the 13th. That’s just a week and a half away. Today has been full of errands and cleaning and planning for the upcoming birthday party.

Today is also an anniversary. Exactly one year ago I was diagnosed with breast cancer. One year ago today I became a survivor.

In the handful of down moments throughout this hectic day, I’ve had flashes of memory from events over the last year of treatment and survivorship.
Tears filling my husband’s eyes as he told me, “You’re going to need chemotherapy and radiation.”
Tears filling my own eyes during the first round of chemo when I sat in an infusion chair for the first time and thought, “I don’t want to be here.”
Jumping a little like an excited child as the confetti floated down after my final radiation treatment.
My newborn son, laid upon my belly just moments after birth. Joy so profound it is too deep for words.
Asking to be turned away from the mirror while my hair was shaved off.
Seeing hundreds of tiny hairs on my hand in the shower as the stubble fell out.
Wanting during my first radiation treatment to jump off the table and run away.
Writing e-mails to my friends and family so they would know what was going on.
Crying in the shower.
Feeling isolated as I adjusted to my circumstances.
Attending the annual company party my first week back at work, feeling sick with nausea, and almost crying as I looked at so many women who still had their hair.
Struggling to cope with the realization that I had a life threatening illness that could very well have prevented me from watching my son grow up if we hadn’t caught it when we did.
Suddenly realizing I would lose my hair and Guy saying, “You poor thing. It’s all hitting you at once, isn’t it?” It was.
Alone in the bathroom, staring at my bald head in the mirror. Some days I felt strong and proud. Some days my reflection looked alien and forlorn.
Wanting to cry from a hot flash because it meant my fertility was gone.
My obstetrician sitting on my bed the second morning after I gave birth, telling me about breast feeding, “You need to stop.”
Feeling light-headed all the time from the anti-nausea medication and the steroids given before chemo.
Feeling elated when my cycle returned because I had hated being 35 and in menopause.
Struggling to drive safely when my fingers and toes were numb.
Needing frequent reassurance that I was still attractive to my husband (and getting that reassurance every time).
Needing to talk about my cancer experience – to record and document events as they unfolded.
Joy at going to my port removal surgery.
Joy when I could stop taking Coumadin.
Realizing that I had a right to demand a butterfly needle when blood was drawn for lab work, and sadness that I knew what it was.
Sadness at realizing I knew the shady spots of the cancer center’s parking lot because I had been there so many times.
Crying because I had just purchased nursing pajamas the day before diagnosis and then learned it wouldn’t be safe to nurse my baby.
My hungry baby instinctively turning his head to my breast as I held him and me bursting into tears while I told him, “They don’t work, baby. Mommy can’t feed you that way.”
Gratitude for the kind souls who looked after Kelric so I could sleep or go to medical appointments, or so my husband and I could have “grown up” time.
Getting encouragement from the e-mails loved ones would send and from conversations with other survivors and how it sustained me.
Gaining confidence and strength as I learned to navigate through insurance billing details, negotiate payments plans with hospitals, and see that my short term and long term disability payments were correct.
Watching my son grow and taking life day by day as I coped with cancer treatments with an infant in the house. And loving him all the more as the special gift he is to our family.
Feeling guilty for falling apart around my husband who would always hold me and let me cry it out so I could calm down and feel better.
Learning that we have a responsibility to ourselves to have unusual things going on in our bodies checked out. And being persistent if the first doctor says not to worry but our instincts say otherwise.
Realizing that you must find medical professionals you like or else you won’t trust their judgment or recommendations.
Staying up late when I was tired so that I could finish typing my updates.
A rush of joy when I realized I had helped somebody else by sharing my story or by freely giving advice based personal experience.
Feeling that sense of, “Aw shucks!” when told that I had inspired someone and mentally kicking my toe at the carpet in embarrassment and secret pride.
Feeling special when Parent:Wise Austin put the picture of me and Kelric on the cover of their magazine.
Feeling special when so many people came to my post cancer celebration party last October.
Wanting to do more to reach other people and help them.
Struggling to balance my work with my newfound activism with private time with my husband and our son.
Loving everyone for their many kindnesses.
Feeling inspired to write cancer poetry and feeling grim about the source of inspiration.
Trying not to cultivate a permanent aversion to the intersections and roads around the cancer center.
Appreciating the knowledge and skills of the medical professionals who treated me and continue to look out for me.
Gratitude for having health insurance.
Feeling the shock and disbelief when I was first diagnosed.
Feeling determination to endure the treatments and thrive afterwards.

I guess one memory lead to another here. That was quite a trip!

I’m doing well now. I had my first post-treatment checkup with my oncologist two days ago. It was interesting how strong the old emotional patterns returned. The day before the appointment I became mildly depressed over returning to the cancer center. That always happened the day before chemo. The day of the appointment I was anxious, just like I always felt the morning of chemo. I was surprised at the reluctance I felt to drive into the cancer center parking lot. I parked my car on the side that gets shady in the late afternoon. I walked in the door and a new receptionist sat at the front desk. I asked for a butterfly needle and a compression bandage from the lab tech who drew my blood. I made real progress in the puzzle in the waiting room before I was called to see the doctor. I felt the familiar sadness at having a reason to be in a cancer center.

The checkup went well. I should mention that a couple of weeks before the checkup I called and asked to speak with my oncologist because I felt I had figured out the link between the liver and post treatment depression. He returned the call and I told him about my theory of the liver being damaged from chemo which leads to Vitamin B deficiencies which leads to depression and also possibly contributes to chemobrain. He found that interesting. I took printouts from my research via the web to my checkup so that he could see what I had found about which B vitamins contribute to what symptoms.

I asked about starting a study to formally prove or disprove my theory. He pointed out that getting funding for a study like that will be difficult since a drug company won’t benefit from the results. Boy, that’s life, isn’t it? You get a lead on a good idea that could contribute to improving the quality of life for thousands or millions of people and you can’t get the medical backing that proves it’s a valid theory because it won’t make money for a major pharmaceutical company. Sounds like I have a new challenge to adopt.

I need to correct something I stated in my last communiqué. I said that anger was depression turned inward. I got it backwards. The saying goes that depression is anger turned inward. Thanks to the friend who pointed that out.

So a year ago I had a lumpectomy and a diagnosis. Ten days later I had a baby. Here’s to the next fifty years of having checkups. If I experience a bit of anxiety with the checkups each time, so be it. At least I’m healthy and alive. :-) Hooray!

Angela the Pink Tiger, Survivor

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53 E-mail: Anger and Depression

2007-02-28T20:29:00.000-06:00

February 4, 2007

A lot of things have happened that I feel compelled to share. I can only fit so much into one evening’s e-mail message so here is the first of a handful of topics. I’m doing well these days, but I have found that the journey didn’t exactly end with the last dose of radiation.

2006 drew to a close and I found myself reflecting upon the year. As my personal experience with breast cancer so far has been encapsulated within that calendar year, I kind of associated the close of 2006 with the close of the breast cancer book for me. I firmly stepped from Patient to Survivor and finally felt that I deserved the Survivor label.

The chapter may have ended but the book isn’t really finished.

The months go on and slowly I am spending fewer moments looking over my shoulder, but the specter of breast cancer always looms in my memory. I’m still adjusting to Life After Cancer and I’m still struggling to come to terms with it. The biggest emotional surprise in late 2006 was my anger.

Depression is perfectly normal for cancer patients during and after treatment. Looking back over I would describe treatment as a deeply traumatic experience. Post traumatic stress symptoms are normal for cancer survivors and the funny thing about knowing stuff like this up front is that the knowledge doesn’t stop the roller coaster. It just gives you a point of reference as you ride.

So I talked to the therapist I had started seeing to help me cope with life after cancer and the depression would lift for a while.

Let me back up. You know that feeling when you’re really scared, like when somebody manages to sneak up on you and then touches your shoulder and you just about jump out of your skin, and then fear is immediately replaced with anger that you were made afraid? Well that’s something like the anger I experienced during the weeks between chemo and radiation. The diagnosis and chemo had made me afraid. Then I had time to relax and reflect, and suddenly I was angry that cancer had invaded my body and invaded my life. Our lives. I resented that it took away from the joy of having a newborn baby and that I missed so many moments with my son because I was in treatment or recovering from treatment. I don’t know if I did that topic justice when I was writing the blow by blow essays, but the chemotherapy days were grueling in part because they cost me precious Mommy moments. I had to rely so heavily on my husband and other people to take care of Kelric for me so I could rest or go to medical appointments that I felt disconnected from my own child for the longest time. It felt like a major accomplishment on weekends when it was just me, Guy, and Kelric in the house and I would correctly interpret a cry or a wail. It was a euphoric high to comfort Kelric and have him respond.

Guy assures me that the difficulties I experienced, such as feelings of loss when the latest Kelric caregiver would tell me about something new he did that she saw and I did not, are feelings he shared as well. He believes that all fathers who work full time and only get to bond with their babies on nights and weekends are equally at a loss and equally anxious about learning how to care for this new little life without doing something stupid and accidentally causing harm. I suppose then that my cancer experience helped me share yet another perspective I ordinarily would not have known. Lucky me. I still say that cancer was a thief and it robbed me of many things, including time I should have had with my one and only baby. Only now with more time between the present and the days of chemo has the bitterness over that loss begun to lose its sting.

When the radiation period ended I experienced the anger that comes as a normal stage of grieving. It’s that separation phase where you’re learning to let go of something or someone.

That anger morphed into something else.

Just as I would start to think I did not need therapy anymore and I was doing fine, I would find myself horribly depressed one day or extraordinarily angry and I could not understand why. I would talk about it to my therapist, feel better, and then start thinking over the next week that everything was fine and I did not need therapy anymore. It became a new roller coaster and I struggled to understand the cause. It is not like me to feel deeply depressed or to feel even moderately depressed for several days or weeks in a row. It is not like me to feel my temper flare in traffic unless I’m hungry, tired, or both. I found myself extremely annoyed or frustrated or downright mad at people for minor things – and knowing the incidents were minor in no way reduced the anger. It was out of proportion and I felt a little out of control of myself. Since my body’s reactions to chemo were out of my control this push-me-pull-me dance I had begun with depression and anger also scared me. How could I find a way to just be me again?

Then one fortunate Thursday night our friend Diana Vicars called. She’s the best hair stylist I’ve ever known and her friendship, kindness and compassion made a significant contribution to my being able to “hang in there” during treatment. Diana reminded me that the People’s Pharmacy near 38th and Lamar is a good place for cancer survivors to get advice about nutritional supplements during and after treatment.

So Diana calls and I tell her about my experience that afternoon of staring at the stapler on my desk and feeling a strong urge to hurl it at the wall as hard as I could. I was so angry over some trivial incident that hurling an object that could hurt someone seemed like counter pressure to relieve the agony. It’s like when you have a sinus infection and there’s pressure behind your sinus cavities, and if you press your fingers in key areas it actually makes you feel better for just a little bit. The only reason I didn’t act upon my impulse was because I didn’t think I could pass off a stapler-sized hole in the wall as something that could happen from accidentally dropping the stapler.

I’ve confessed that memory to a few other people since then because it was such a strong low point for me. I’m glad I didn’t act upon it, and it’s not like me at all to have violent mental images. Diana gave me advice which I followed and it has made a world of difference.

Take B vitamins.

From Diana’s advice and the research I did afterwards I learned that the liver stored B vitamins. The liver filters poisons out of your bloodstream. Where are chemotherapy drugs dumped? Uh, into the bloodstream. That’s what the port is all about – to help the poisons reach your heart as quickly as possible where they are pumped to your entire system via the blood. So (now we are getting into my personal theory) the liver must go nuts processing a ton of poison it would normally try to filter out. I’ll bet if I ask my oncologist he will confirm that chemotherapy drugs are deliberately dosed to be toxic enough to get past the liver so that it does the most good in terms of killing cancer cells.

B vitamins, for those of your who are like me and can’t spout the uses of most vitamins off the top of your head, are a series of 8 vitamins scientists thought at first were a single vitamins and then realized later were a family of vitamins. They have names like Riboflavin, Niacin, and Folic Acid. They have numbers like B1, B2, B9, and B12. Some of the B vitamins help with little things like depression and anger. Actually, let’s say that a more scientific way. If one’s body has a deficiency of B vitamins, one may experience symptoms such as depression and anger.

Another side step: one friend pointed out that anger is depression turned inward. I suppose I probably felt internal as well as external anger, then. At least my mind was an equal opportunity depressionist.

Other things that can go wrong when your body has insufficient quantities of B vitamins can include heart palpitations and fuzzy thinking. I was really scared by an abundance of heart palpitations at one point. Remember I went to the emergency room over it because I was scared I was having heart problems? They found nothing wrong and sent me home. Memory loss issues and the inability to think clearly also seem to be linked to lack of one of the B vitamins.

Let’s think about this. The liver struggles to cope with excess poisons. The liver stores B vitamins. The liver gets damaged from chemotherapy so it no longer does as good a job as it used to. Depression sets in. Maybe depression is linked to liver damage linked to B vitamin deficiencies?

I started taking a daily B vitamin pill. I looked for something that focused on Bs and no other vitamins. I also started taking Sam-e every day because Sam-e also helps ease depression, increases clarity of thinking, and incidentally it can help repair liver damage.

It was a night and day improvement.

I felt like myself again! Still do, because I’m still taking my supplements. I no longer need therapy. I’m no longer depressed. I’m no longer angry (unless another driver does something really stupid and then I get over it in about 30 seconds).

At one point I ran out of the B vitamins the lead pharmacist recommended I take when I was in chemo. I took the pills for a while, but they were big horse pills and smelled bad. Being half nauseated all the time, I found it too difficult to swallow the nasty pills and not have them come back up so I quit taking them. So in December I took the remaining vitamins each day until the bottle was gone. I purchased a different brand of B vitamin complex and couldn’t remember where I had put the bottle. It took me two days to run across it in the kitchen in the cabinet with all the hot tea bags. Why was it there? Who knows. Maybe a quick clean up because company came over – I don’t know. What I do know is that in those two days I went back to feeling angry and depressed and I could not understand why I felt so rotten again until I realized that I had quit taking my daily dose of Bs. I found the bottle, took my new, smaller (but still stinky) horse pills and felt like myself again. This is not a placebo effect for me. I believe it is a real, chemical difference.

How nice to have found something so effective so quickly! I’m back to joking with people at work. I know not to take every little thing personally, and I only bite my husband’s head off when I’m too tired or too hungry. That’s the way it should be.

Angela

P.S. Never ever put it in writing that you have experienced depression if an insurance company asks. That is a weapon they will club you over the head with about denying you new coverage. Yes this comes from personal experience backed up by the wisdom of an insurance agent and her personal experience. No, it isn’t about my cancer and isn’t affecting my life now.

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52 E-mail: Race for the Cure (Nov 2006)

2006-11-07T21:26:00.000-06:00

Tuesday, November 7, 2006

http://www.statesman.com/search/content/news/photos/11/110606_cure.html

The Race for the Cure was this past Sunday. Guy, Kelric and I got up very, very early and headed towards Auditorium Shores to be a part of the event. We ate breakfast in the survivor tent. We failed to find the main group of Pink Ribbon Cowgirls to walk with them because I forgot where we were supposed to meet and there were around 22,000 other people hanging around. We walked near the back of the group, and it seemed like everyone was walking faster than we were. But we made it all the way through the Family Walk (which was only 1 mile as opposed to the 3.2 miles of the full course) and it was an unforgettable experience.

We started out by walking over the bridge on South First Street. The lovely aroma of bats (and bat waste) caught our attention as it wafted over the water from the nearby Congress Avenue bridge. Oh boy, that’s a special smell. Then what made my heart catch in my throat was seeing the sea of people coming the other way as they approached the end of the walk. The bridge ahead of us was full of people walking north and it was full of people walking south. The bright pink shirts were in abundance, marking the survivors like me. I was pushing Kelric in his stroller. Guy was walking with me on my right, and I felt my eyes tear up as I thought about all these thousands of people coming together to fight breast cancer.

This year’s Race for the Cure raised $1.2 million.

The link above is to the Austin American-Statesman web site. It has a picture of the survivors who showed up for the picture (which means a LOT more survivors were around but they aren’t in the shot). I am sitting on the front row, fourth from the left. I’m wearing a pink cowboy hat as were most people associated with the Breast Cancer Resource Center. The group picture that includes me goes very quickly in this slideshow, but I found that you can stop the slide show with your mouse. I’m in the first and third slides.

I have a picture of my own to include. It’s of the chair after I pulled out all the pink stuff from the Race for the Cure survivor goody bag. It looks like an explosion of Pepto Bismol, to tell the truth.

While we ate breakfast in the survivor tent, we shared a table with several other survivors. Two of them were swapping stories. Their cancer was caught early enough that they needed only surgery and not chemo or radiation. (Man, I’m jealous!) Both women were a generation older than me and they said how frustrating it was to try to get the insurance companies to cover mammograms for their daughters when their daughters were in their 30s. Ah…I thought. Another reinforcement of the need to convince insurance companies to include this as part of annual screening for younger women…

Kelric started fussing before the Race was over. He was hungry and it was nap time so that was it for us. No hanging around to talk with strangers after our walk. Fortunately, my office building was right across the street so we walked over, I used my magnetic card to unlock the door, and we got to use real restrooms with plumbing instead of the pink porta-potties. And then we went upstairs to my office to feed our baby and let him drift off to a much-needed nap.

Then we loaded up Kelric and headed over to Whole Foods a few blocks away. There we ate a proper breakfast some 3-4 hours after our scant continental breakfast, and in the ladies room a woman asked if I was the person on the Parent:Wise Austin magazine cover this month. Oh my! A first taste of celebrity! I know it’s a small pool and I’m still a very small fish, but the moment was fun. I told her that yes it was I on the cover and my baby was with the husband just outside. We ended up leaving the ladies room about the same time and she oohed and ahhed over an adorable sleeping Kelric for a minute before moving on. I guess I’ll stop complaining about not being mentioned in the article itself. A picture is worth a thousand words, right?

Angela

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51 E-mail: "Parent:Wise Austin"

2006-11-07T21:25:00.001-06:00

Tuesday, October 31, 2006

Well, the magazine is out and Kelric and I are on the cover. It’s a disappointing write up for us, though. Even though I was interviewed along with Shauna, Michele, and Audra of the Pink Ribbon Cowgirls, absolutely no mention is made of me or of Kelric in the article. Our pictures are all plastered all over the article and on the cover, which is neat, but we are mentioned nowhere in the article itself and that is weird.

I'm glad that Shauna, Michele, and Audra are all quoted. That's what the interview was for. I'm okay with having our pictures shown in place of story quotes, but it confuses people because the article focuses heavily on Shauna's story and yet the pictures of me and Kelric are on every page. It would have made more sense to the average reader if someone had put in a caption under just one of our pictures mentioning that here's another cancer survivor with baby.

Instead, the average reader will probably assume that the photos of Kelric and I are of Shauna and her son Cooper. Too late now to change it and that's a shame. Cooper is really cute.

I got a bunch of copies for parents and friends, anyway. It isn’t every day I get to have my picture in something available to the general public. The pictures look great, by the way. I especially love the one with Kelric sticking out his tongue.

You can catch the online version at www.parentwiseaustin.com. Here is the direct link to the archived Nov 2006 magazine: http://parentwiseaustin.com/Archive/2006/11_November/2006_11_PWA.pdf.

Cheers,
Angela

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50 E-mail: wait...but there's more

2006-11-07T21:23:00.000-06:00

Thursday, November 11, 2006

BREAST CANCER
I was so hopeful. I wrote what I thought would be my last entry after the party and I was glad to wrap things up. Life was settling down and there was so much to look forward to.

Don’t get me wrong. There’s still a lot to look forward to, but life isn’t ready to sit back and let me relax yet. I’ve heard about four – count ‘em, 4 – breast cancer diagnoses in the last three days. Two came on Tuesday and two came today, Thursday.

Diagnosis #1 – A friend of a co-worker’s husband. The co-worker works on the floor below me and the newly diagnosed woman is in her 30’s.
Diagnosis #2 – We’ll come back to this one.
Diagnosis #3 – A friend of a woman who works one floor above me. The friend is 36.
Diagnosis #4 – A friend of a co-worker/friend who works on the same floor as me. The friend is in her 50’s.

Circling back to Diagnosis #2, this is someone in my family. My grandpa learned this week that he has breast cancer.

You heard that right. My 82-year-old maternal grandfather. A man with breast cancer. Here’s a link if you want to read more. http://www.susanlovemd.com/breastcancer/content.asp?L2=6&L3=5&SID=224

Men have breast tissue. They don’t have much of it, but they have a little bit of breast tissue and fat. All children do until puberty when girls develop more and boys don’t. This tissue in men can get breast cancer just like women, only most men don’t get diagnosed until they are in later stages of the disease because they aren’t as aware of that part of their bodies as women. The treatments are the same, too, with sentinel lymph node biopsies and mastectomies and chemo/radiation. Dr. Love’s web site quotes that an estimated 1,720 men will be diagnosed with breast cancer this year (2006).

I have no idea what stage my grandfather is in. I’m hearing rumors of surgery, but I don’t know the details. I was shaken by the news when it came Tuesday night. I found myself crying in my husband’s arms, worried about my grandfather and upset that breast cancer wasn’t completely out of my life yet. I was depressed about it all day Wednesday. Then I saw my therapist Wednesday night and discussing the situation with her took the sting out of it. Therapy with a professional counselor can be a wonderful thing. I’m still concerned. I’m still upset. But that edge of panic has receded. Now I’m brewing on how to be supportive while I live an hour and a half away.

SURVIVORS
I went to a couple of events recently that I haven’t written about. The first was the champagne brunch and silent auction benefiting the Breast Cancer Resource Center, the local Austin-area support organization for breast cancer survivors. The brunch took place on October 8th, a Sunday. During the brunch I learned from the speaker that one in eight women will be diagnosed with breast cancer in her lifetime. That statistic shocked me.

One speaker talked about how breast cancer, while the most common cancer for women, is not the deadliest cancer for women. More women die of lung cancer than breast cancer. That doesn’t surprise me because lung cancer is very deadly once contracted. Only about 10-15% of lung cancer patients respond to chemotherapy. About 90% of the people who get lung cancer could have prevented it by not smoking, and about one in ten smokers get lung cancer. Sorry. I digress. I worry about my friends and co-workers who smoke now that I have seen statistics on how vicious lung cancer is.

During the brunch one of the speakers asked all of the survivors to stand. Different things had happened that had garnished applause before that moment. As I stood with my fellow survivors I heard applause louder than anything else that day, and it brought tears to my eyes.

Several days later on Thursday, October 12th I attended the annual Texas Conference for Women. I got to hear Martha Stewart speak that morning. I’m afraid her speech was a lot of “Look at me and buy my stuff” so I didn’t learn much. The speaker at lunchtime, however, was Nancy G. Brinker, the founder of the Susan G. Komen Breast Cancer Foundation. Governor Rick Perry and First Lady Anita Perry spoke as well, but it was Nancy Brinker’s talk that riveted my attention. Her speech was inspirational to me and I enjoyed it thoroughly.

She mentioned that breast cancer kills about 3,000 Texans and about 40,000 women across our country each year. That’s 100 people per day who die from breast cancer. To put it into perspective she compared that figure to terrorist attacks. If we had 100 Americans killed each day by terrorists you can bet the government would be pulling out all the stops to put an end to it. That’s why it is important to continue to let legislators know that we demand funding for breast cancer research so that we can put an end to this disease and find a cure.

Ms. Brinker, a breast cancer survivor (though the foundation was established in honor of her sister), asked all of the survivors to stand. I stood with a handful of other women across this huge room of 8,000 conference attendees seated at round tables. Once again the applause came, and once again it brought tears to my eyes. It was an incredible moment, and as I sat down at this table of eight women I was tempted to tell them, “You’re all safe because I’ve already been diagnosed.” The moment passed, however, and I remained silent.

AN IDEA
Seeing and hearing the founder of this influential organization gave me an idea as I sat at the table. The Pink Ribbon Cowgirls group sure has a lot of members now, and we’re finding more young survivors all the time. (Got two more just this week!) The mortality rate for breast cancer has actually gone down lately because early detection and advances in treatments are making a difference. Groups like the Susan G. Komen Breast Cancer Foundation that have made substantial contributions to breast cancer research have had a very real impact in making things better, and I’m proud to be a part of the Race for the Cure this coming Sunday even though I haven’t raised any money for it this year – I just didn’t have the energy to do fund raising and other co-workers have solicited people for money in honor of our co-worker who was also treated for breast cancer this year.

My idea as I sat as the table was to get my insurance company, Aetna, to lower the age at which they would pay for mammograms as part of the annual well woman exam. They pay for them now, but you have to be 40 years old or older. They won’t pay for mammograms for younger women unless there is a medical need. I have a medical need now, but I know from my first mammogram earlier this year that they’ll only pay 90% of it and not the 100% they cover for 40-year-olds. That kind of prejudice would be enough to push me into not getting checked if I didn’t already have a breast cancer diagnosis under my belt. How many women in their 20s and 30s are sent to get mammograms first thing when they or their doctors discover suspicious lumps? Mammograms must have some place in things if they are used as a diagnostic tool for the young. How much better are the new digital mammograms at finding lumps in the denser breasts of younger women than traditional mammogram machines? Would it make more sense to include breast ultrasounds instead of mammograms as part of exams for women younger than 40? If Aetna changed their policy would other large insurance companies follow suit?

These are the kinds of questions I have been asking myself since October 12th, and this is the goal that feels right for me to pursue. I would like to contribute to raising awareness that women younger than 40 are at risk for breast cancer, and if there is a way to find breast cancer sooner then I think insurance companies should cover that technology as part of their annual well woman exams.

I don’t know how far I can take this or what kind of momentum I can gather. I don’t know if this is the best use of my energy. Part of me wonders whether I can make any difference at all, but then I remember The Accident of 2004.

My husband and I were in an auto collision on July 9, 2004. I cannot bring myself to write out the details because it was such a horrible, traumatic experience. The short version is that the other motorist was riding a motorcycle and he died about six hours after the collision. Guy had made a left turn and the other guy hit us. In the end the police determined that the motorcyclist was at fault because he was doing around double the speed limit and he popped a wheelie as he entered the intersection. Guy was devastated because he had looked for oncoming traffic and seen nothing, so the sudden appearance of another motorist was a complete surprise.

For the next several months as the accident played out repeatedly in our memories, Guy and I tried to analyze what went wrong and how could it have happened in the first place. When we realized that the road in front of us dipped down so that oncoming traffic was completely concealed for a couple of seconds, it finally clicked in our heads and we understood how the accident was possible. When we saw the local newspaper print a map of Austin and all the fatal collisions around the city for 2004 (ours was listed, of course), we saw that several other collisions had taken place at the same intersection and we speculated that it must have been for the same reason. The left turn arrow rarely made an appearance so you were forced to turn left on a green light without an arrow, and the dip in the road made it dangerous to do so.

MAKING A DIFFERENCE
I found a place on the City of Austin’s web site where people could fill out a form online and report problems with intersections or traffic signals. I wrote. Guy helped me edit the words until we described things with clarity and intelligence. About two weeks later someone from the City wrote back and told me that a study had been conducted and research showed that there had been many collisions just like ours at that intersection over the last two years: somebody turned left and collided with somebody coming the opposite direction while speeding. Not only did they agree with our recommendation that people should only be able to turn left on a green arrow and not on a general green light, but the signal had already been changed to put that proposal into practice.

What an amazing moment that was, to see that somebody in authority had listened to my/our request and made a simple change that would save lives. I cried from joy and sent the message to our insurance claims adjuster to pass along to the family of the deceased.

Filling out the right form for the right reason made a difference.

I carry that experience with me always. Nothing can ever undo the tragedy, but at least other people won’t have to go through what we did and what the loved ones of the motorcyclist did because of the light and the shape of the road at that particular intersection. I’m not really comfortable broadcasting that experience in such a public way, but telling the tale is pivotal to explaining my determination for this idea of mammograms for the under-40 crowd. I use that memory to remind myself that one person can make a difference, and once in a while that one person gets to be me (with the help of my wonderful husband).

So maybe it’s not so crazy to think that I can start something that will ultimately contribute to insurance companies covering technological examinations of breasts of women younger than 40.

A plan of attack is beginning to form, but I hesitate to write too much about it now. I figure the first thing is to do my research on what is appropriate and reasonable to ask. If insurance companies paid for it, what is the most appropriate way to detect breast cancer in breasts dense with breast tissue? I thought I was done writing updates as events merited it. I guess I was fooling myself. There’s work to be done and I need to do as much of it as I can. From disease, accidents, or other causes you never know when your life will be cut short in the middle of things. The Alan Parsons Project wrote a good lyric in the song “Turn It Up.” The chorus goes: “If there’s something you’ve found to believe in/then the message must get through./So don’t you sit in silence/when you know what to do.”

Angela

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49 E-mail: the celebration, the speech, and a moment of contentment

2006-10-22T12:39:00.000-05:00

Today is Sunday, October 22, 2006. It’s a little after 1:00 in the afternoon and everyone in my house is taking a nap except me. The dog is sleeping on the floor just inches away from my chair. The cat is snoring delicately from the chair behind me. The baby is sleeping on my husband who is napping on the sofa in the living room. With all the sleeping people and animals in the house and the dryer tumbling upstairs, a sense of contentment steals over me as I write this latest and perhaps final entry.

A week ago I had a party. The Party. It was a celebration of the end of my cancer treatments. My husband and I worked like mad to get the house clean. A friend came early the day of the party to help with last minute preparations. My father grilled meat and several guests brought excellent bread, side dishes, and desserts. Culver’s donated four ice cream cakes. The celebration began, people showed up, and I got to read a speech. We had good food, good conversation, and a very good time. It was exactly what I needed to find closure.

I pondered for days how best to say “thank you” to all the people who helped me get through the days of treatment with my sanity intact. I think the final version of the speech did a pretty good job of saying how I felt. It helps if you remember that the theme of the celebration was Life Can Be Beautiful. Odd that a brush with cancer would lead me to a renewed hope for the spirit of mankind, but it has.

Read Sunday, October 15, 2006…

Thank you all for coming.

Today marks the one month anniversary of my last treatment for breast cancer. It is Sunday, a day of rest, and a day of celebration.

As some of you know, I sometimes express my emotions through poetry. I intend to share two poems with you. The first one is very short, and it is called “Cream in My Tea.”

the cream in my tea
hangs suspended
until stirred

unique little patterns of milk
standing apart
until forced to blend

like people in a group
individuals
until a common goal unites them

a job a war
a rescue
a Reason to stir, then blend

Through various acts of kindness, your individual actions created a symphony of support during a difficult time. Whether it was a flexible schedule at work, or a card, baby sitting Kelric, or food, money, time, or just asking how I was doing, it counted. It all helped. Thank you for stirring to act in some way, and for blending your kindnesses into a web of support. It means more than we can ever say.

I’m one month out from my last cancer treatment, and things look good for my future. For the present I have my energy back. My color is back. And I am so very happy that nothing is poisoning or zapping me.

The second poem is one that was published in the Austin International Poetry Festival’s Di-verse-city anthology in 2004.

The Flowering Vine
(A Woman’s Strength)

Given time, I can strangle stones.
My green tendrils seeking purchase in tiny cracks,
Clinging to rough walls
As my roots grow deep, grab hold, stay.

Mine is the strength of endurance.
Wind may blow but it cleans me.
Sun may bake but it feeds me.
Rain may drown but I drink deep.

And I grow…
With subtle, quiet progress, I thrive.

And when I bloom, everybody notices.

I feel like I’m blooming today.

I remember people quoting to me, “That which does not kill us makes us stronger.” I have to tell you, I knew going into this that I was strong enough to survive it. I was just mad that I would have to be that strong.

Nothing could make cancer treatments easier, but you helped make it bearable. Thank you, all of you, for showing me how wonderful people can be. Thank you for reminding me that Life Can Be Beautiful.

Since the party I have found peace. My world no longer revolves around surviving breast cancer. Since the party I feel that I can close this chapter in my life and that feels healthy and appropriate.

Now I can focus on just living. Routines and patterns are shaping without cancer treatments causing waves of disturbances. Oh I’ve got a mammogram coming up next month and follow-up visits with my breast surgeon and my oncologist for the rest of my life, but this is part of the “new normal” and it doesn’t scare me. I’ve stopped obsessing over the fear of recurrence/metastasis. I’ve got one last cancer poem that I would like to finish, but I think I will be inspired to write poetry about other topics soon.

Next month the November 2006 issue of Parent:Wise Austin should be out with Kelric and me on the cover and the article about mothers with cancer inside. You can download a PDF version of the magazine from their web site, http://www.parentwiseaustin.com/, so you folks who live out of town/state can read the article as easily as the people who live in Austin.

I’m going to walk in the upcoming Race for the Cure on Sunday, November 5th. I will continue volunteering for things that benefit the Pink Ribbon Cowgirls and the Breast Cancer Resource Center. I am interested in becoming a peer counselor for other young women going through treatment. But there is a part of me that now breathes a sigh of relief. A part of me draws a deep breath and quietly says, “It’s over.” Life will certainly have other unpleasant surprises down the road, but for now I am allowed to let my family rest and I can enjoy the contentment. Life can be beautiful, and you know I will look for that beauty now more than ever before.

Angela

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48 POEM: The Flowering Vine

2006-10-09T19:20:00.000-05:00

The Flowering Vine
(A Woman’s Strength)

Given time, I can strangle stones.
My green tendrils seeking purchase in tiny cracks,
Clinging to rough walls
As my roots grow deep, grab hold, stay.

Mine is the strength of endurance.
Wind may blow but it cleans me.
Sun may bake but it feeds me.
Rain may drown but I drink deep.

And I grow…
With subtle, quiet progress, I thrive.

And when I bloom, everybody notices.

Written by Angela Patterson
Copyright Angela Patterson 2003

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47 E-mail: catching up and grieving

2006-09-26T13:30:00.000-05:00

10/1/2006

Lots of things have happened that I haven’t made the time to write about. This entry plays “catch-up” with those events.

DOCTOR APPOINTMENTS
It’s been a little over two weeks since radiation treatments ended. I have a follow-up appointment with my radiation oncologist this coming Friday.

I neglected to report how things went a few weeks on a follow-up back with my oncologist. That appointment was on a Thursday. Guy went with me and we were both in good moods for the rest of the day. My oncologist said that things were looking good. I could discontinue taking the dreaded Coumadin pills and that meant I could discontinue the weekly INR tests. Hooray! No more regular blood work!

ALLERGY TESTING
I also failed to report that I got tested for allergies not long ago. Since my cancer treatments have gotten me over my fear of needles, I figured why not go for the allergy testing thing which has lots of needles. I joked with people that I loved needles so much that I needed to get a fix from another source since my cancer treatments were drying up.

Really the last thing I want is a continuation of shots or blood draws, but I’m tough and I can take it. As it turns out, allergy shots are nothing compared to what I’ve already experienced.

I endured the whole series of outdoor, indoor, and food allergy tests. First, from fear that chemo may have suppressed my immune system enough to block histamine production, they put a drop of something on my arm and scratched the skin lightly with a needle. I got a big red welt that itched like mad. That was a good thing because it meant my body was reacting normally to things that triggered allergies. I thought so.

Then a grid was drawn on my back and over a hundred different potential allergens were put on my skin, one drop at a time. A needle lightly scratched the skin in each drop of liquid and we waited to see where the welts would form.

Cedar pollen gave a huge, obvious reaction that left no doubt. No wonder I’m so miserably sick during cedar fever season here in Austin!

For the allergens that had some reaction but not the spectacular result of cedar, they injected something under the skin of my left arm and made a new grid with 16 different things.

In the end I learned I’m allergic to all the tree and grass pollens in the area as well as dogs and a few foods. The pollens come and go throughout the year but I’m allergic to so many of them that I’m reacting to something or another all year ‘round. That explains my embarrassing dependence on facial tissues.

Last Friday I went for my first allergy shot. I can expect to receive allergy shots for the next three years, with the frequency the most intense in the beginning. It’ll taper off to once a month eventually.

The needles are so fine that they don’t even hurt. I’m all for needles that don’t hurt. Several people have told me they’ve gone through allergy shots and the improvement to their quality of life was well worth the trouble. Good! It’s time for improvement.

GRIEVING
I had a conversation recently that helped give me unexpected clarity.

It started when the co-worker who had lost her husband visited with me for a little while and we talked about her grief. I cannot imagine how difficult it must be to lose a spouse. She cannot imagine what it must have been like to go through cancer treatments with a newborn in the house. As we talked we learned that we had more in common than we imagined.

Both of us were out of the office for two months. It felt strange coming back after the extended absence. Staff had turned over. People had moved to new locations within the office. Workloads had been redistributed so we didn’t exactly pick up where we left off. It was wild to hear her express how surreal it felt to be back and have so many things not be the same, and I heard myself say, “I know how you feel.” And I did.

We also learned that we have in common a mixture of reactions from people who don’t know us well. Some folks really want to know how we’re feeling and what’s going on and they ask and really listen to the answers. Some folks may want to know but they don’t want to upset us by asking so they don’t. It reminds me that people often don’t know how to act around people who are grieving. I’m one of them.

The more we talked the more I realized something very important. I’m in mourning.

Since the day of my diagnosis, I have been grieving.

I had breast cancer. It’s a big deal. My life will never be the same and I’m trying to figure out what that means now.

I’m also trying to define exactly what it is that I’m mourning. My husband thinks part of it is a loss of innocence. My body tried to kill me. I never thought it would do that. Now that I know it can do that I can never trust it the same way I did before. Everything takes on a “before cancer” or “after cancer” demarcation in the timeline of my personal history. I will spend the rest of my life wondering if my cancer has come back, and the only way I will know if I’m cured is if I die from some other cause.

FEAR
Dealing with the fear of recurrence and the fear of metastasis is a hard thing for me these days. That fear was the most intense in the first weeks immediately following chemo. That was when I read that it doesn’t much matter if metastasis is caught early. Once breast cancer metastasizes it is treated as a chronic illness to be “managed” because it is so very difficult to cure. That’s not to say that it is impossible to cure, but metastasis generally kills you. I feel unlucky to have had cancer to begin with so I worry that I will not escape the low odds should my cancer metastasize.

A recurrence, on the other hand, is not such a bad thing because it can be treated with more chemo and possibly more radiation and catching it in the early stages can make a big, big difference. That is why I will remain diligent about going to all of my appointments with my breast surgeon and my awesome oncologist, Dr. Carsten Kampe of South Austin Cancer Center.

My husband likes to remind me that we caught my cancer fairly early. It was a stage II tumor and my lymph nodes weren’t affected. My early e-mails to loved ones show that I knew then that it was a 3.5 cm tumor. I don’t know at what point I began to think it was a 2.5 cm tumor. I guess wishful thinking tricked me for a while. But we got all of the tumor out during the lumpectomy. The re-excision did not show evidence of additional cancer so it seems that all the cancer was removed during the first surgery despite the dirty margins. I’ve gone through radiation which should have killed any microscopic cells remaining in the breast tissue after surgery. I’ve gone through chemotherapy which should have killed any breast cancer cells that traveled elsewhere in my body. Let’s hope all the treatments were effective and all the microscopic cells are gone, gone, gone.

Now I will get a follow-up mammogram before the end of the year and start getting my once-a-year mammograms every April. I will alternate appointments between my breast surgeon and oncologist for the rest of my life and I will pay attention to and report any unusual pain in my head, chest, or bones.

MAMMOGRAMS
I have had two women tell me they have gotten mammograms recently because of me. I’m really proud of them for taking care of their health like that. Mammograms are important, especially as we get older. Self exams are also important, and I encourage all women to become familiar with the way their breasts feel so that they will be aware should something feel different.

DEATH AND COMPASSION
The weeks between chemo and radiation surprised me with the strong emotions and the depth of sadness I felt at that time. Fear of recurrence and fear of metastasis lead of fear of dying sooner rather than later.

Fifteen years ago I lost a dear friend to a sudden car accident. Two years ago I was a passenger in an auto collision that claimed the life of the motorcyclist who hit us. I didn’t need cancer as a wake up call to get me to treat every day as something precious. I already learned that from losing my friend fifteen years ago. I didn’t need cancer to remind me that any of us can go suddenly at any time. I was reminded of that two years ago.

I do not share the gratitude I have heard others express about getting a “second chance” at life. I mean no disrespect to those survivors, but I don’t look at my cancer experience as a wake up call and it certainly wasn’t a gift to me of a second chance.

I’m angry that cancer threatened my life and I’m annoyed that it interrupted my life so dramatically, especially during a time that should have been only joyful with a new baby entering the household. I already lived each day as something to be treasured, so I didn’t need cancer to teach me to pay attention to what’s really important. I already knew I was strong, so I didn’t need cancer to show me what I’m made of.

There are so many life lessons I could have learned from cancer but I had already learned and applied them from past experiences. So I found myself asking what can I take from this cancer experience that is positive?

It’s important to me that I find something positive about all of this mess. More than one person reminded me of the quote probably every cancer survivor hears at some point: That which doesn’t kill us makes us stronger. I didn’t feel a need to be made stronger when I was on the verge of becoming a first-time parent. I knew I was strong and I was pissed that I would have to pull so hard on that reserve of strength to get through this.

What I have taken as a positive lesson from my cancer experience is an increased depth of compassion.

My great uncle pointed out eloquently that the fuzzy thinking, light headedness, clumsiness, and need to move slowly that I experienced after one of the Taxol treatments is very much what he lives with every day as a man in his seventies.

My husband lives with neuropathy in his fingers every day compliments of injuries to his hand from Vietnam. He and another friend of ours deals with arthritis on a regular basis.

I would never have expected chemo to show me what it can be like to have arthritis, or numb fingertips, or the general effects of old age.

The last time I went to a movie, I found myself exiting the theatre behind a woman using a cane. Because she blocked one side of the aisle and the younger woman helping her blocked the other side, I could not get by them. I had to wait while they slowly made their way down the stairs, and I found myself remembering how slowly I was forced to move when I was struggling with chemo side effects. It gave me patience with waiting for the old woman with the cane, and I entertained myself with thoughts about other things rather than sighing with irritation about not being able to dash to the ladies room right away.

If I thought that somebody was pulling the strings and that cancer was a stop on my journey of life toward some greater purpose, then I would wonder and fear what in my future would need such great compassion that I would have learn it now from breast cancer.

I don’t wonder and fear that I will be called upon to exhibit compassion for some specific important trial up ahead, though. Sometimes bad things happen to good people, and there isn’t necessarily a reason. My friend didn’t die for a reason fifteen years ago from his car accident. It devastated me and his family and his other friends and loved ones. I realized I had a small talent for writing poetry because I wrote poems back then to help me cope with my loss, and those poems meant something to other people who had known my friend and grieved his loss with me. I had lost not only my friend, but my innocence that life (or death) had any sense of fair play. Poetry was one positive thing I could take from the death of a very good person.

I’ll take something positive from cancer because I’ve looked for it and I choose to take it. It’s all I can do. And I’m learning to do it while I wonder if this disease will eventually come back and kill me anyway.

A MID-LIFE CRISIS
That brings me nearly to the present. I’ve decided to seek professional counseling because I don’t wish to remain in the grip of my fears and depression. I’ve had three sessions with a therapist now and it’s helping.

I drove to my most recent session last week with the windows down and the moon roof open in my car. The weather cooperated that day because the temperature was pleasant. We’re moving from the primary season in Texas, hot, to the other season, not so hot. (Most places have four seasons. Austin, Texas really has only two.)

I felt more in touch with the world by rolling down the glass that usually insulates me. When my hair was longer I couldn’t bear to ride in a vehicle with the windows rolled down. My hair would whip into my eyes and sting my skin.

Now it’s so short that I’m lucky to feel the wind in my hair at all, so I’m making the most of it and enjoying some things that I otherwise would not.

As I drove with the wind in my face and my hair most definitely NOT in my eyes (think Mia Farrow and Rosemary’s Baby), I thought about how free it felt to do this and how I could understand middle-aged men buying convertible sports cars. I chuckled to myself as I contemplated how driving around town with the top down seemed like a perfectly sensible thing to do.

Then I told my therapist about questions I asked myself in the weeks between chemo and radiation. One night I had a tearful conversation with my husband and vocalized the questions that began haunting me at the time.

What if I die in the next five years? What goals have I left unfulfilled? Has my life made any difference? Have I done enough?

My therapist told me that most people think of these things when they are middle-aged. I laughed and realized I have been in a mid-life crisis! I’m not sure that she was as amused as I, but it sure felt like an important puzzle piece had just fallen into place.

I forgot to mention in my list of where I have become more compassionate that I sympathize now with women going through menopause. The hot flashes and other symptoms are worse than annoying. I really feel for women having to put up with that uncomfortable period of adjustment that takes years for the body to sort out.

I can remember wanting to cry every time I had a hot flash because I was 35 years old and experiencing menopause. My fertility returned during the radiation days, so my hot flashes have gone away. My cancer was ER and PR negative so I’m not a candidate for Tamoxifen, a drug that has been shown to reduce recurrence of breast cancer in survivors with hormone sensitive tumors. Tamoxifen can cause hot flashes, so I’m grateful to not have to take it for the next five years.

Between a chemo-induced menopause and concerns about mortality that hit most people in their 50s, it’s no small wonder that adjusting to my post-cancer situation has been stressful.

One of the challenges now is trying to balance how to live my life as though I will die in 50 years and at the same time living as though I may die much sooner, like in the next 5 years. If my cancer is going to recur or metastasize, it will probably do it within the next five years.

Really the next three years are the first big test. If I get through them and remain cancer free then it really means something. The five-year mark is the next big test. Then ten years. Then twenty. Breast cancer is sneaky and sometimes waits 20 years to come back. Most breast cancer patients are older than their 30s when first diagnosed so they don’t have good data about breast cancer survival thirty, forty, fifty years after treatment.

It’s not a bad thing, though, to ask myself what goals haven’t been met yet. I’ve thought of one or two and I’m beginning to look around for ways to fulfill those goals instead of counting on “someday” to come around and magically make the goals happen without any effort on my part.

Cancer has made me take a hard look at what is important to me and what is not. I am glad to look back at my life and speculate that if I died tomorrow, I wouldn’t have many regrets over not keeping in touch with friends or telling people how much they mean to me.

GRATITUDE
It has surprised me how strong my “village” is, with the friends and family who stepped forward to show encouragement and support as I went through treatment. My husband was a rock, showing unflagging support and shielding me from the worst of his stress.

It was only last week that it hit me how hard it must have been for him. He came with me to so many appointments, all the surgeries, and all but one of the infusions. I shared all of my thoughts and fear and he held me more than once as I sobbed and wept.

We got through it with our marriage intact and stronger than before. And we learned a new level of team work as we coped with my inability to do as much as I wanted to do to take care of our son. I’m so proud now to be a full part of the baby-caring team and not the mommy who needs as much care as she gives.

I can begin to imagine but not fully appreciate how difficult it must have been for Guy to watch me go through treatment. After all, he could accompany me to everything and hold my hand, but he couldn’t take away my pain. It was my skin that got pierced with the needle every two weeks for chemo. It was my body that was poisoned and developed the long list of side effects that made living miserable.

He could listen to me complain and he could sympathize, but he couldn’t endure the nausea for me. He could encourage me to hang in there, but he couldn’t gather courage for me to get my breast zapped with radiation yet another time when the skin was peeling and stinging.

I had to do all that myself and I know it just killed him to watch. I am so grateful that he remained steadfast as the loving, accepting man he’s always been with me. I’m glad we’re best friends and I could tell him anything all along. I think at times I told him more than he wanted to know, but even then he took it well. I could not have asked for a more wonderful spouse.

We both agree that we have the baby of our dreams. Kelric is beautiful, healthy, and our daily injection of laughter. He smiles and we melt. At six and a half months he is crawling all over the place and beginning to pull himself up.

It is impossible for me to think for long that life is awful when I have this wonderful little cherub at home. Only parts of life have been awful this year. Other parts have been incredible. What an amazing journey…

Angela

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46 E-mail: the last round of radiation

2006-09-15T10:16:00.000-05:00

9/17/06

Today is Sunday. Friday (two days ago) was my last radiation treatment. You would think that I would have been happy to go and get it over with, but it was an emotional day and joy over getting through the last treatment was only part of it.

RADIATION

The morning of my final dose of radiation I ate frozen waffles and ice cream for breakfast. I had the song lyrics, “It’s my party and I’ll cry if I want to,” running through my head as I drove to the cancer center.

I brought my camera for the last treatment. It’s something I did not do when I had chemo because I did not want to make other patients in the infusion room nervous or upset. Radiation is a more private event and I wanted a memento of the last cancer treatment I’m scheduled to receive.

I figured out earlier in my treatment that other patients got confetti thrown on them after their final zap. This educated guess was confirmed earlier in the week when a woman who got treatments before I did told the receptionist on her way out that it was her last treatment and she got the confetti and everything.

I was called back to change my clothes and suddenly realized that I’d left my camera in the car. My radiation oncologist’s nurse told me it was okay to fetch the camera so that’s what I did. I came back in time to wait several minutes for someone else to finish dressing.

When it was my turn I changed into the hospital johnny, picking one of the less faded ones because it looked prettier. On the way into the radiation room one of the technicians asked if I was glad that this was my last treatment.

“No,” I told her honestly. “I’ve been dreading this treatment just as much as the others, but I’m glad I won’t have to come back for more.” That response surprised her.

My skin didn’t hurt over the last week. It healed from the painful moments of the week before and the boost didn’t cause new problems. So I should have been in better spirits because I haven’t suffered much from fatigue and the skin reaction is under control. Still, I’m sick of treatments of any kind and I’m more than ready to get back to a normal life. Last week was hard to keep myself showing up for radiation morning after morning. It’s like that final week in your old job when you’ve given two weeks’ notice. Are you really glad to show up for your last day of work at the old place of employment? If you’re like me you’d rather stay home and rest.

Back to radiation… We went through the usual routine of positioning my body on the table to line up the marks on my abdomen with the laser beams in the room. They set the table at the right elevation according to notes in my chart. The gantry with its smaller field of radiation blasted me from one side and then the other, the left side with its usual high pitch and the right side with the lower pitch that started with the boost.

I waited on the table for my treatments to finish and noticed that the radio was too low to hear the music. Typically there were commercials playing during my treatments. The week before I was finally getting to hear music, probably because my treatments were consistently late last week instead of early or on time. Friday I couldn’t hear the music, so I thought about what I’ve been through this year and all the changes I’ve endured thanks to cancer. My eyes teared up and I almost cried. But then a technician came into the room and I held back.

I got to bring my arm down from the cushioned grip over my head for the last time. I got to put my arm back into the sleeve for the last time. One of the technicians brought my camera into the room and I turned it on and showed her which button to push. She knew I wanted a picture in front of the gantry, so she started to take my picture when I asked, “What about the confetti?”

“You’re not supposed to know about that!” she said, surprised. I figured it out weeks ago, but didn’t bother to explain. So the other two technicians came into the room then. I forget that they have the sound turned on in the booth so anything said by someone in the room can be heard in front of the room in case someone needs help.

The three of them dipped their hands into a metal pail I had never noticed before and readied themselves to throw the confetti. One of the counted to three and I found myself bouncing back and forth on my toes like an excited child. On the count of three they tossed the confetti into the air and it floated silently down like snow. It got in my hair and on my face and clothes and I smiled, touched by happiness at last.

Two pictures were taken of me then, one in focus and one not. Both are next to the gantry I won't have to see anymore. On the way out I noticed the mirror and took another picture of myself.

Then I waited to see the doctor. The radiation oncologist always meets with folks after their final treatments.

MEETING WITH THE RADIATION ONCOLOGIST

The meeting with the radiation oncologist was all sweet and not bitter. He congratulated me on getting through my treatments and asked if I had any last questions. I did.

Why did my rounds of the boost involve the gantry turning left and right like my regular treatments? I thought it was going to come straight at me where the tumor had been. And why did it have two different pitches of sound when the radiation was in use? I knew from asking the technicians questions earlier in the week that the different sounds meant different energy levels, but why was that necessary?

He shifted his hands which were holding my chart. He withdrew a small plaque and handed it to me. The plaque has a quote from John Wayne and I would see a larger version of this every day as I left the radiation lab. The plaque says, “Courage is being scared to death but saddling up anyway.” Boy, isn’t that the truth?

My doctor then said something like, “We know you put on a good face but you have to suck it up every day you come here.” Oh! I guess the people who see the patients all day long, day after day pick up on a few commonalities such as feeling less than thrilled to be there. My obstetrician must be so upbeat because she gets to spend parts of her days with pregnant patients who are looking forward to meeting their babies.

This ritual of the John Wayne plaque was a complete surprise to me. It felt good. My eyes once again teared up but I didn’t cry.

Then my doctor answered my questions. He turned to pictures in my chart to help him explain things.

The picture was an image of my breast overlaid with colored lines to show fields of energy and numbers next to the lines. The lines weren’t straight lines. They followed the contour of my body and they formed amoeba-shaped circles in the breast tissue.

He explained that the depth of my tumor site was 5 cm below the skin. The energy it would take to send radiation that deep into my body would send it too deep. He showed me a mark in the graph that invaded a significant portion of the white space below the breast. He explained that the radiation would have hurt my lung (the white space) if they had done the boost with the gantry shooting energy straight at me. That’s why the boost had the gantry going side to side just like the regular treatments.

Then he showed me a different picture of my breast with energy markings overlaid in color. I think the breast pictures (which were in black and white) were either x-rays or CT scan images.

With the second picture he explained that the lower energy travels farther. It was necessary to send lower energy at my breast (with the lower sound) because it penetrated the tissue further. The distance it needed to travel was 10 cm to reach the tumor site on one side. The distance needed was less from the other side which is why the faster energy was used there.

He also explained something I didn’t completely follow about one type of energy affecting the skin more than the other. Thought went into giving me as few treatments as possible of the energy that damages the skin more.

I appreciated the technology that allowed him to plan my radiation treatments with such careful attention to detail. I also appreciated how my doctor took the human side of treatment into consideration.

I asked if the pictures represented actual or projected treatment results. He told me they were accurate within one percent. Oh wow!

And with that, my visit was over. I’ll return for a checkup in three weeks.

I went into the dressing room, applied the lotion my friend Tara got for me, changed back into my work clothes, and left the cancer center. As usual I saw the John Wayne quote on my way out. I hugged my new plaque to me and smiled. "Courage is being scared to death but saddling up anyway." Damn straight.

Then I got into my car and cried.

Previous - 45 POEM: Dessert
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45 POEM: Dessert

2006-09-09T07:43:00.000-05:00

Ah...the rapture of dessert!
Something wonderful and interesting,
with opposing flavors melded.
Or something oozing and gooey,
deliciously sinful in divine sweetness.
It could be a classic done exceptionally well
or an unfamiliar combination of exotic delights.
Whatever the form, the impact is a flavor to savor,
an impression of perfection.
This is the moment when time stands still,
the taste buds tingle and applaud,
and nothing exists but this miracle -- this harmony
a mouth can roll and revel in.
This fleeting bliss is a gift from the gods.
Treasure it.
Ah...the rapture of dessert!

Written by Angela Patterson
Copyright Angela Patterson 2006

I meant to publish this poem close to the time I wrote it (and wrote about it), our anniversary weekend in Salado in July. I forgot to post it then, but I'm catching up now. The blog formatting messes up the indentions that makes my poetry display as written. Oh well. I'm happy to be able to share.

This morning I'm going to experiment with homemade crepes for breakfast. I intend to cut up strawberries and throw heavy cream into the mixer so it will whip up into unsweetened whipped cream with a touch of vanilla. Strawberries, whipped cream, and crepes will be like having dessert for breakfast. Yum!

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44 E-mail: 7 more to go

2006-09-06T20:55:00.000-05:00

9/6/2006

A CHANGE OF PLANS
This morning held a surprise for me that I didn’t like. It’s a change of plan for my radiation treatment.

Instead of 25 treatments of irradiating the whole breast (and nearby lymph nodes) and 8 treatments of the boost, I am now to have 28 treatments of whole breast irradiation and only 5 treatments of the boost.

The reason I don’t like this change is because the skin under my arm has finally reacted like a sunburn and begun to peel. Starting this weekend the skin has been peeling and the skin underneath is tender and easily irritated. Because the peeled skin is akin to the sensitivity and texture of new skin under a blister, it sticks to my arm when I bring my arm down. Lifting my arm up or forward causes the sticking skin to unstick and that’s when it hurts. Just a little bit. Many times an hour. Every hour I’m awake. Oh yeah, and then there’s the added joy of when my bra digs in just a little bit and makes it hurt some more. Radiation isn’t as tough as chemo but it still sucks, and now I get an extra 3 treatments of the radiation that’s caused this condition. Grrrrr…

Yesterday the nurse gave me a packet of an astringent called Domeboro (Aluminum Acetate). I am to combine the powder from the packet with water. Then I’m to dip a cloth in the water, wring the water out, and keep the cloth on the peeling skin for 15-20 minutes. Then I’m to let the skin air dry for 5 minutes before I apply lotion. And I’m supposed to do this 3-4 times a day. Yeah right. Like I have time for that.

I plan to try it this evening. Once a day is better than nothing. My radiation oncologist assured me today that the stuff works wonders and I’ll be amazed at how quickly my skin heals.

RADIATION EDUCATION
I decided to ask why my treatment plan has been changed. I still don’t exactly understand why fewer doses of the boost equals added doses of the full blast, but here’s the part I did understand.

Chemotherapy doesn’t help with the site where the tumor was removed because chemotherapy is systemic. It travels through your bloodstream to affect your system. Blood vessels were cut during surgery, so the healed area has scar tissue and blood that now travels differently in the site. Chemotherapy cannot help where it cannot reach, and it cannot reach through blood vessels that are no longer there. So that’s why we need radiation to kill the microscopic cancer cells that might have escaped from the surgery. That makes a lot of sense to me.

Furthermore, lack of blood flow means lack of oxygen. For some reason, cancer cells with less oxygen are harder to kill with radiation, so it takes more radiation to kill them.

(This next bit is my own mental leap here and not part of the conversation with my doctor.) I supposed that is why chemotherapy and radiation shrink tumors before surgery. Chemotherapy delivers the systemic poison when the blood vessels cancerous tumors create still feed the tumors. And oxygenated cancer cells die faster when radiation is applied.

My radiation oncologist reviewed my chart recently and found something of interest in my final pathology report. It you recall, I had essentially two lumpectomies. The first one was March 3 when the cancer was discovered and diagnosed. That’s when I was still pregnant. We thought from the preliminary pathology report that the margins were clean but learned in the final pathology report that the margins were dirty on one end. When I had the passport installed in my arm and the sentinel lymph nodes biopsied March 22, my surgeon made the original incision wider and removed extra tissue from the breast. It turns out that the final pathology report from that surgery reported no disease, and that’s what caught my radiation oncologist’s eye last week. No evidence of disease after the second excision means less call for the boost, so I get less of the boost.

A HALF RECALLED CONVERSATION
From the party Guy and I attended last weekend I remember part of a conversation but I cannot remember the source. This party-goer has a friend who has been working on a project using light to kill cancer cells. It was an amazing breakthrough, and I think it was shown that light waves at the right frequency shrank tumors and caused cancer cells to kill themselves. Something that causes cancer to go suicidal gets me excited.

I remember the person mentioning that the light technique is now in clinical trials. So I googled it. (Funny how that word “Google” has become accepted as a verb.) I typed in “light kill cancer clinical trials” and found this link on ClinicalTrials.gov. http://clinicaltrials.gov/ct/show/NCT00030589 The technique is called Photodynamic Therapy and in this trial it was combined with chemotherapy for lymphoma patients. (What’s humorous is that Google posed the question to me if I really meant to type “might kill cancer clinical trials.”)

After learning the proper name for the technique, I tried Google again and found this article at the National Cancer Institute. http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic In a nutshell this looks like a promising new technology and it is already approved for certain kinds of cancer, such as esophageal cancer and non-small cell lung cancer, but it doesn’t apply to breast cancer. And it turns out that the treatment helps the immune system kill cancer cells. They don’t commit suicide.

I have to laugh at the quack sites that claim that the government is suppressing efforts to find the cure for cancer. Researches are trying all kinds of things to find a cure and kill cancerous cells. I know the FDA has a hand in trying to make sure new treatments are safe. If that’s governmental interference I’ll take it. There’s something about application of the scientific method and documented results of double blind studies under controlled conditions that makes me feel oh so much better about new techniques.

FLEXIBLE BABY
Kelric did something unusual today. According to one of his teachers at the Montessori school, he spent time in the stroller outside with his feet on the tray. Kelric pulled his own little feet from the normal position until they stuck out in front of him, between his torso and the tray. He stayed that way for a while, happy as a clam. She said that in all her years with all the different kids, she’s never seen any other kid do that.

I’m reminded of the ultrasound at 21 weeks where our first view of Kelric in the womb showed his feet by his head with his knees straight. The ultrasound technician said she had never seen a baby do that before.

It makes me wonder if he’s destined to become a gymnast, or a Cirque du Soleil performer.

I think I’ll go do some stretching now.

Angela

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43 Tiger-striped nails

2006-09-04T22:21:00.000-05:00

Here are photos from July 15th. Guy took pictures of me with Kelric, getting a few close-ups of my tiger-striped nails.

Angela

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42 E-mail: 9 more left

2006-09-04T22:10:00.000-05:00

9/2/2006

RADIATION UPDATE
Today’s update tracks time with a different approach. Instead of counting how many treatments of radiation I have received, I’m beginning to track how many are left to go.

Someone asked me that question today. “How many treatments do you have left?” I answered, “Ten.” My husband quickly corrected me. “Nine!” Well, they all blur together after a while. But Guy’s right. I only have 9 treatments left.

The cancer center will be closed Monday for Labor Day, so my next treatment will be on Tuesday. It will be the 25th and final treatment of whole breast irradiation. The last 8 treatments will be what they call “the boost.” That means the radiation treatment will be changed so that only the site of the lumpectomy will be irradiated. The direction of the radiation will be different as well. Instead of a strong beam that’s designed to hit my body at an angle to pass entirely through the breast tissue (and presumably out into the room), the boost will come straight at me but won’t go deeper than the breast tissue. The beam gets changed so that it doesn’t hit the bones or organs behind my breast. Oh, and the dosage of radiation will be increased from 180 rads to 200 rads. Looks like I’ll top out at over 6000 rads of accumulated radiation treatment. Lucky me.

All I can say is, “This had better work.” I SO don’t want to do this again.

I was given a new mark on my body to care for. It’s a dot in the middle of the lumpectomy scar. The dot is covered by a special tape like my “plus sign” marks are and I got it Thursday morning. I also got another round in the CT scan machine so that my radiation oncologist can prepare the machine details of the boost. I was recently corrected by someone that the doctor I had been referring to as my “radiologist” is actually my “radiation oncologist,” so I apologize for the earlier misnomer and vow to say it right from now on.

STATE OF MIND
I’m in about the same frame of mind as the last entry, I think. I’m happy to have normal amounts of energy. I’m stressed about money and resigned to my treatment regime. I’m optimistic again about my long term survival and I’m thrilled to be Kelric’s mom. Some days I’m extremely tired and that makes me more prone to feeling depressed. I have gotten a decent amount of rest the last three days so depression has faded away lately.

Sometimes my skin and/or my lumpectomy site hurt. Sometimes they don’t. I grumble a little when my lumpectomy site hurts because it reminds me of the early days of diagnosis when I was healing from the lumpectomy incision. My greatest desire often is to get the laundry caught up. That desire has yet to be fulfilled. I appreciate even more when people baby sit Kelric for us as that gives me time to focus on running errands or getting stuff done around the house. I’m getting tired of the piles of papers in the “office” part of the music room so I’ve started the attempt to organize and file the piles. I’ve made a dent but I’m far from finished.

BLOG
I’ve decided to succumb to peer pressure and start a blog. For those of you who may be wondering what a blog is, it is a journal of someone’s thoughts posted to the web in reverse chronological order (with the most recent entries showing up first). “Blog” is short for “web log.” I have been more or less creating a blog when I send out e-mail messages to you all, but it’s been private. A blog will be public in the sense that it’s on the world wide web and anyone can stumble upon it. I’m a little nervous about this, but it will make it much easier for new people to find and read all of the messages to date. I can even post pictures.

It’s going to take me a while yet to finish the preparations, but essentially I’m going to go through all of the updates I’ve sent out since diagnosis and post them to the blog (with spelling errors corrected). The first entry of the blog fills in the blanks a little and talks about how I came to get the surgery that became my lumpectomy and diagnosis and how I was given the news that I had breast cancer.

I’ll let you know when it’s ready.

PARTY
Guy, Kelric and I attended a party tonight. We got to visit with a number of people we hadn’t seen in ages. It was wonderful to see these people and reconnect with them.

I’m looking forward to our Life is Beautiful party October 15.

MAGAZINE INTERVIEW LAST WEEK
On Thursday (two days ago) I joined the three founders of the Pink Ribbon Cowgirls in giving an interview to a local magazine called ParentWise. I believe the article is about young mothers with cancer. This was my first magazine interview and I was excited to be included. The article will appear in the November 2006 edition.

That’s it for today, folks. A bit dry and matter of fact this time, but at least I’m feeling upbeat again.

Angela

Previous - 41 POEM: On a Good Day
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41 POEM: On a Good Day

2006-09-04T22:09:00.000-05:00

On a Good Day

When asked today how I’m doing,
I say, “Today’s a good day.”
I don’t mean it in the Klingon way,
“Today’s a good day to die.”
I mean that I have energy again.
I can take care of myself
and all the details of life.
Today the nausea sleeps.
My muscles and joints don’t ache.
I can walk fast.
No haze of pain clouds my thoughts today.
This is how I will feel once all the chemo treatments are done.
This feeling will keep the bottles washed and the diapers stacked.
Today I feel better than the days before they said, “Cancer.”
Today I’m a dancer in a beautiful ensemble of improving health.
My slice of solo time dazzling and inspired.
In two days I will ache in a shifting landscape of muscles and joints.
My fingers and toes will go numb.
But I have survived 6 out of 8 treatments so far.
Today is a good day.
I’m smiling. Little happy thoughts dangle
in my head. I swallow the thoughts and survive.
Soon I’ll be even better; I’ll thrive.

Written by Angela Patterson
Copyright Angela Patterson 2006

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40 E-mail: 17 of 33

2006-09-04T22:05:00.000-05:00

8/23/2006

I’ve got a few random things to share.

TUMBLE
For one thing, I took a tumble a week and a half ago taking Kelric to the Montessori school. They have stepping stones in the shape of Texas that connect the driveway to the sidewalk. A week ago Monday I was carrying Kelric in his car seat. He’s getting heavy. I was carrying the seat kind of low, and it hid my view of my feet on the steps. When I took that last step to get to the sidewalk my right foot unexpectedly turned to the right and I went down. I didn’t so much drop Kelric as set him down quickly as I fell. I ended up on the ground, but the carrying bar of the car seat was something I was still holding onto as I fell and that broke the fall considerably. I ended up with a lightly sprained ankle and an aching foot. I also bruised both knees but not badly.

I told the owners of the Montessori school about my fall and they were very concerned. They have made plans to even out the level of the stepping stones with the ground. Currently the stones sit on top of the ground and it creates a good inch or more of uneven surface that could contribute to future falls, so I’m glad they’re planning to change that.

The night of the fall I waited until evening to ice my ankle. That plus a Tylenol dosage took the pain away for the night. Now a week and a half later I still get faint pains from the bone in my foot and my ankle, reminding me to treat them gently. Each day I feel a little better so it’s a nuisance but really no big deal.

Since last Monday, however, I put Kelric in the baby carrier that I wear around my torso and I carry the car seat separately. That works much better for me and for Kelric. He has a grand time kicking his feet and sucking on the top of the carrier. He also looks really cute that way and I appreciate the lighter weight in the car seat.

SCREWDRIVER
The cubby hole bin things in the changing room at the cancer center need work. The hinges are not properly aligned and the cubby doors are very close to one another, so the misalignment issues mean they rub and stick on the surrounding doors when I try to open a cubby. The cubbies are to hold personal belongings while patients wear the hospital johnnys for radiation treatment.

This annoyed me just enough that I brought my own screwdriver one day and fixed the hinge on cubby number 5. That’s my favorite cubby since it’s easily reachable and usually has a key in it. Then I decided to try to fix the other doors. I quickly realized that I was out of my depth because fixing the other cubby doors requires time and a study of how each door’s hinges are set or misset and how they relate to the other doors.

So a couple of Tuesdays ago I complained to my radiologist about it. I waited a week and nothing changed, so I complained to my radiation technicians about it. The nurse said she would inform her boss. I said I was tempted to bring my screwdriver in from the car while we waited for the person in treatment to finish up. It was taking a while. The lady next to me asked if I would take a look at cubby number 10 because that one is her favorite and it bangs into or rubs other doors. The next day I brought my screwdriver and took a look at 10, but fixing 10 required fixing the doors around it so again I backed off. I mentioned this to the lady whom I saw again because her treatments are scheduled after mine. The nurse said that her boss had put in a call to the company that had originally installed the cubbies and they were coming to fix them. Oh boy! That day I tightened the screws that attach the handle for the cabinet door with the stack of hospital johnnys inside. That made me happy, tightening the handle and knowing that the professionals would take care of the rest.

It’s been a few days and nothing has changed yet. Guy suspects that it was embarrassing for a patient to try to fix the dressing room cubbies herself. I told the radiology nurse that the rest of the facility is so nice that it is strange to have this situation in the dressing room. She agreed. Hopefully it will get fixed before I get to stop coming every day.

RADIATION CHEMICAL REACTION
Yesterday I met with my radiologist after treatment. He sees me every Tuesday to keep an eye on possible skin reactions and to answer any questions that come up.

I told him that my breast is starting to hurt. Kelric kicked me that morning as I was changing him and it hurt. The day before I had held a bag of trash too tightly to my chest as I carried it downstairs and suddenly it hurt. It doesn’t hurt all the time, but it is beginning to ache whenever pressure is applied.

My doctor explained that fluid typically fits the void left after a lumpectomy. I knew there was fluid there from the mammogram I had a couple of months ago. They told me then that my body would reabsorb the fluid over the next year or so and it’s nothing to worry about. I’m still not worried, but my radiologist told me that a chemical reaction takes place when the fluid is irradiated. It causes a reaction that feels a lot like arthritis. He suggested I take ibuprofen to manage the pain. I can’t take that because I’m still on Coumadin for three months after the port removal (July 24 plus three months), so all I can take it Tylenol. He said that Tylenol won’t work as well, but it will help so I should take it every day.

Meanwhile, my “skin reaction” continues. The skin under my armpit looks quiet tan now. Under my breast it’s turning red. The lumpectomy scar is still light pink and none of these places hurt or itch yet.

I’m also getting comments about how much energy I seem to have. I must admit that I feel like my old self again if not better. I think the cancer was battling with my immune system for years and it affected me in all kinds of ways. Now that the tumor is out and chemotherapy isn’t poisoning me, I have a lot more energy. It’s nice.

AUTO PILOT
Today as I drove to the cancer center I realized that my brain was on autopilot. Just as I can navigate my way to and from work without intense conscious thought, I turned my trip to the cancer center over to the automatic navigation control and wound up at my destination without much conscious consideration. It struck me as sad that my path to South Austin Cancer Center should be so well traveled as to become automatic.

FUZZY HEAD
Earlier this week I rode up in the elevator to my office and a co-worker happened to ride up with me. I wasn’t wearing a scarf or hat at the time so my head was uncovered. My co-worker asked if she could rub my fuzzy head. I didn’t mind. I like it when people rub my new hair. It felt like velvet last week but this week it’s soft like Kelric’s hair. I’m tickled to see it filling in and it’s fun to have others share in that excitement. “Oh Angela!” she said in her English accent, “It feels like moleskin!” I’m not sure what moleskin is, but it must feel very soft.

CELEBRATION
I’m planning a party to celebrate the end of cancer treatments. I believe I had mentioned this before as a tentative event. Now it is scheduled for Sunday, October 15th. I’m still mulling over times, but I believe 2:00 to 5:00 p.m. will work for most people. That gives churchgoers time to attend services and eat lunch. It gives many Texas-based out-of-towners time to travel, even with church and lunch first. I’m halfway inclined to suggest that the people still around at 5:00 stick around longer and eat a spaghetti dinner here before going home. What do you think? Spaghetti sound good? Should I encourage people to bring desserts or snacks for the 2:00 to 5:00 part? I’m not terribly creative when it comes to planning parties. All I want to do is hug and talk to everybody. I figure if I set out tea and stuff to nibble on then the rest will take care of itself.

For parents, we’ve got the playground across the street from our house. That can be fun for kids under 12.

I wanted a theme for the celebration. At first I thought the theme would affect the food, like having all sweet desserts for a “Life is Sweet” theme. But I want non-sweet food, too, and “Life is Sweet” seems not quite the tone I’m trying to create.

Today it hit me as I walked to my car from radiation that I could pick a broader theme such as “Life Can Be Beautiful.” I would like for you party attendees to wear something beautiful. The exact dress of the outfit doesn’t matter. You can be formal or casual, dressy or comfortable.

Just wear something to my party that makes you feel good. Either it makes you feel beautiful when you wear it or it looks beautiful to be worn.

For those of you who can’t make the celebration, wear something for me the day of the party that links beauty with joy.

I have a pair of fish shorts that has a horrible cut. I’ll never wear them in public and I rarely wear them around the house. But the fabric is so freaking soft that I just want to pet my shorts all day long. It’s wild. I’m not going to wear the fish shorts to the party, but it would be in keeping with the spirit of the event if you wore an equivalent to my fish shorts that day because that fabric to me is beautiful. I also have a black maternity dress that I felt beautiful wearing when I was pregnant. It was comfortable and classy and looked really nice with a certain gray choker. That made me feel beautiful and even elegant despite my awkward pregnancy stages. I don’t think I’ll wear a maternity dress to my party, but I think you get the idea.

Surviving the cancer treatments adds a sweetness to daily life for me. Not feeling nauseous or numb or having my body hurt is a beautiful thing, and these painful and expensive treatments will give me years to watch my little boy grow up. That’s beautiful. Wear what inspires you to think about beauty and then please be sure to tell me why.

I’m going to go to bed now. I felt distressed earlier in the day worrying about metastasis and local recurrence statistics. Now I feel upbeat again and optimistic. Roller coaster, roller coaster… I’ll go to bed thinking beautiful thoughts tonight.

Angela

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2006-09-04T22:03:00.001-05:00

Monday
8/21/2006

Today will be my 15th treatment. By Wednesday radiation will be halfway over. It’s been fairly easy, all things considered. My skin is beginning to look lightly sunburned and it’s starting to hurt if pressure is applied. Most of the time I don’t notice any discomfort. Oftentimes I feel a little yicky after eating a meal and that started with radiation. Hopefully it’ll end when the treatments are over. The interesting thing about the sunburn effect is how I can see a right angle for one of the corners. It’s as though someone held up a sheet of paper and the corner of the page got burned onto my chest.

I’ve attached two photos.

One is of me from a week and a half ago. It shows two of the four radiation marks that help the technicians line up the equipment consistently for treatment. So far the universal response has been laughter when people (non-radiation technician people) have seen these (such as my husband and my parents). I don’t know why. So have a giggle on me. The other picture is a sunrise from our back porch on our wedding anniversary this year, July 15. I came downstairs to make a bottle. From the kitchen sink I saw the sunrise and felt inspired by the beauty. I quickly grabbed the camera and captured an image to remember the moment. Enjoy.

Angela

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38 E-mail: 8 down 25 to go

2006-09-04T22:03:00.000-05:00

8/10/2006
Today is Thursday and I’ve had 8 radiation treatments so far. Monday this week (treatment #5) I noticed that my incision from the lumpectomy has turned light pink. Today I asked about what kind of lotion I can use on my pink spot and I was told to buy the Nivia brand with aloe. If I can break away to get to the grocery store soon I’m going to hunt for it. With Kelric’s early bed time and our general exhaustion after working a full day and then playing with the baby, it’s hard to get to the store.

Monday I asked during treatment why they put a shield of some kind over the x-ray machine. The technician told me it evens out the radiation for my body. Part of my body is thicker and part is thinner. The shield is thicker on the side where my body is thinner and the shield is thinner on the side my body is thicker. That way they don’t overtreat the thinner bits to get sufficient radiation to the thicker bits. Oh.

Tuesday they took a chest x-ray. Wednesday they took another x-ray. What’s that for? The doctor made an adjustment of half a centimeter in the positioning of the radiation and the second x-ray was to document the change.

I asked Wednesday what the x-rays show. The nurse put up a collection of CT scan images (4 images on one x-ray sheet) and Tuesday’s x-ray side by side. She showed me where the radiologist had marked the area where the radiation treatments are supposed to hit my body. I recognized the treatment pattern overlaid on my CT images as the shape of the “leaves” behind the glass on the gantry machine. Oh. Then she showed me from the x-ray where the radiation is actually hitting my body at the original setting. She compared it to where the doctor/computer-generated image showed it was supposed to hit my body. Slight variation. Then she put up that most recent x-ray with the half centimeter adjustment made. She showed me the slight difference where it is affecting a smidgen more of my breastbone than before. OK. That was neat, and I thanked her for taking the time to explain things to me. I’m glad I asked.

Today I asked how many rads I’m getting with each treatment. The answer: 180. That doesn’t seem so bad. From “Dr. Love’s Breast Book” I expected 4500 to 5000 rads per treatment. I felt very comforted hearing that my treatments only contain 180 rads. Then again, 33 treatments times 180 rads each equal 5940 rads. That disturbs me because I think radiation is cumulative. I know that a modern x-ray is just a fraction of a rad.

Here’s a quote from a link http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_Can_breast_cancer_be_found_early_5.asp to the American Cancer Society web site. “To put dose into perspective, if a woman with breast cancer is treated with radiation, she will receive around 5,000 rads (a rad is a measure of radiation dose). If she had yearly mammograms beginning at age 40 and continuing until she was 90, she will have received 20 to 40 rads. As another example, one mammogram exposes a woman to roughly the same amount of radiation as flying from New York to California on a commercial jet.” I didn’t know you got dosed with small amounts of radiation from flying on planes! That’s interesting.

What is a rad, exactly? According to this web site http://hyperphysics.phy-astr.gsu.edu/hbase/nuclear/radrisk.html#c5, “The rad is a unit of absorbed radiation dose in terms of the energy actually deposited in the tissue. The rad is defined as an absorbed dose of 0.01 joules of energy per kilogram of tissue. The more recent SI unit is the gray, which is defined as 1 joule of deposited energy per kilogram of tissue.” I believe “SI” stands for “Standard International.” So the “rad” is the old unit of measurement and the “gray” is the new unit of measurement and 100 rads equal 1 gray. And I thought “gray” was just a color involving black and white. It must involve pink as well.

I still have loads of energy and I only get depressed when I notice how few eyebrow hairs I have left. The “baby” eyebrows are growing in, but the continued hair loss marks another thing that’s beyond my control (and, let’s face it, I’m something of a control freak) so it’s mildly traumatic and bugs me continually. It also confuses me to still be losing any type of hair when it’s growing back all over. What’s especially annoying is that the stupid eyebrow hairs hurt when they’re ready to fall out. So one or more hairs die, they hurt, I rub my eyebrows and see the hair or hairs on my finger. I sigh then go back to whatever I was doing. Another day or two and it’ll be over. Meanwhile, my face looks funny.

On the other hand, the back of my head feels like velvet. It’s really neat. The front top of my head feels like velvet, too, only a shorter pile. The middle top of my head feels bumpy as all the little hair follicles are trying to push through the skin. The hair is growing back in the order it fell out with the earliest fallout areas coming back first. We still can’t tell for sure what color it is. In some light sources the color looks pale blond, in others it looks strawberry blond, and in others it looks a little dark. Right now Kelric’s baby fine hair is about an inch long so he’s way ahead of me. I’m getting more comfortable with my super short hair and when I feel too hot I’ll take my head scarf off at work. I tried wearing my wig today but it made my scalp itch too much. The scarf is soft and comfortable so I like it better than the wig. One of my coworkers has promised to loan me his scarf with red chili peppers on it. I hope he brings it soon so I can wear it and be sassy.

The other day Guy and I were somewhere that I found to be cold and he didn’t. It’s a common situation, I’ve noticed. This time he checked my forearm for goose bumps to see how cold I really was. I looked at my forearm, too. “Look,” I told him, “both of my hairs are standing up.” All the little baby hairs were at attention but they’re so short they always look that way. The two remaining original hairs on my arm were both indeed standing up. I wasn’t exaggerating, but it was an injection of humor that made Guy laugh. I forgot all about being cold as I laughed with him.

Eeee-gads! The quick note I started to write just after 10:15 has turned into another long one. It’s after 11 p.m. and I’m going to pay for this tomorrow. I could blame tomorrow’s fatigue on the radiation but now I have all of you witnesses to keep me straight. Guy was smart. He fell asleep on the sofa just after 9 p.m. tonight.

‘Night, ya’ll,
Angela

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37 E-mail: beginning of radiation

2006-09-04T22:02:00.000-05:00

8/3/2006

This week marks the beginning of radiation for me. I can’t understand why I’m so depressed about it.

Monday was fine. That’s the date of my “sim,” the simulation of my body created in the CT scan machine. I laid on the table with my right arm holding a grip above my head. Lasers created cross marks on my abdomen and a technician marked my skin with a red marker to show the cross marks of the laser beams. These marks in three places around my mid-section help them calibrate the equipment to the same position each time which in turn helps control exactly where the radiation goes. Clear adhesive tape was placed over the marks so that they wouldn’t wash off in the shower. I am strictly forbidden to soap or scrub them in any way. Monday’s session involved the marks, lying down on the CT scan table, and going through one pass in the CT machine with it whirring at full speed. Then we were done.

I asked to look at my CT scan on the computer before I left. The technicians indulged me. As a result I got to see my lungs, heart, stomach, kidneys, spleen, and aorta. It was pretty neat. It reminded me of the long ultrasound session at twenty-something weeks when we got our first good look at Kelric and his internal organs. We got to see the four chambers of his heart that day and it really impressed us. Guy asked if I could see the site where the lumpectomy had been but I could not. The display went by quickly.

So Tuesday I showed up for my first dose of radiation. I asked Guy to come with me for moral support and so he would know what the equipment looked like. The technicians let him stand with them next to the computers that run the million dollar radiation machine called a gantry. He could see me the whole time thanks to a closed circuit video feed. Nothing like lying on a table with half my torso exposed knowing strangers can see me on a camera when I can’t see them.

The first treatment of radiation is the longest, I’m told. It started by returning to the original CT scan machine where the technicians used the lasers once again to check the measurements and add purple marks to my body, this time above the breast. Then I went into the radiation room and laid on a similar long, thin table on rails with the gantry at the head. Here’s a link to see what one looks like. http://www1.va.gov/ntxradoncology/page.cfm?pg=2 One technician moved a green foam thing to support my neck as I lay down. The other technician put a strap around my feet to keep them together then she adjusted my position under the lasers by pulling the paper I’m lying on. Also a cushiony thing shaped like a triangle is placed under my knees for support. I understand now that this is part of the daily setup process for radiation.

They used the gantry to take chest x-rays first. I’m not sure why. The gantry machine rotates around me while I lie on the table with my right arm over my head and my left arm at my side. It was interesting to watch the thing take on different shapes. According to the article on the web site this is new technology that shields organs from radiation damage and what I called a “thing” is actually “a newly developed field shaping system called multileaf collimation.”

During the first blast of radiation with a buzzer letting me know when it starts and stops, I had a strong impulse to leap off the table and run away. What kept me in place was fear that organs would get damaged if I moved. I had similar impulses Wednesday and today, too, though the intensity was less.

The radiation treatments don’t take very long. There is a long blast that’s between 30 seconds and a minute, then a short one of maybe 4 seconds. The gantry rotates what I believe must be 180 degrees and I get another long blast that’s about 30 seconds long followed by another short one. Then we’re done. The strap is removed from my feet, the pillow thing removed from under my knees, and a technician or two helps me sit up. Then I’m allowed to put my arm back in the sleeve so the hospital “johnny” covers my torso again and I’m free to return to the dressing room to get dressed and leave.

For my first treatment on Tuesday we were asked to stay a little longer to meet with the radiologist. He’ll see me every Tuesday to keep an eye on possible skin reactions. It will probably be a few week into treatment before the first reactions start to appear, if I have any.

Radiation is surreal to me. I lie on this table and listen to a buzzer while expensive equipment rotates and adjusts. The room is darkened with the main lights turned off and small fluorescent lights in recessed canisters creating enough glow that you can see around the room. The temperature is moderate so I’m not freezing while I’m half naked. That’s a relief.

So far I hate radiation more than chemotherapy. Maybe it’s because I got to keep my clothes on during chemo. Oddly enough chemo felt less invasive. It hurt more since my skin got pierced with a needle every time they drew blood or accessed my port, but that hurt usually stopped or eased up after just a few minutes. Radiation doesn’t hurt at all yet I find myself longing for the days of infusions. I don’t understand.

I’m not sure why I feel so prudish about this. During the days after Kelric’s birth when we were still in the hospital, I would nurse Kelric with my breasts fully exposed and it didn’t bother me a bit to have the nurses come and go. They would see the lumpectomy scar and offer condolences. Other than that I didn’t feel self-conscious. I don’t exactly feel self-conscious with the radiation routine. I just feel emotionally tired. Tired of having to do something uncomfortable around people I don’t know for the sake of killing the cancer cells. Tired of thinking about cancer. Tired of adjusting my work schedule to accommodate cancer treatments. Earlier this week I found myself crying and apologizing to Guy for getting sick. Naturally he reminded me that I had no control over getting sick and he would prefer that I go through cancer treatments than risk it coming back by having no treatments. Just being held in his strong arms while he assured me “It’s okay” was enough to calm me down.

It was so nice once the side effects wore off from the last round of Taxol and before I started radiation. It was so nice to have a normal life again. Even with the surgery and having to be careful not to mess with the steri-strips or put pressure on the site where the port used to be, I still felt more normal than I do now.

And oddly enough, I’ve taken this week to grieve my diagnosis all over again. I’m actually starting to feel well and truly sorry for myself for what I believe is the first time. Maybe the shock has worn off and I’m past the initial phase of processing that I had cancer. I’ve accepted my diagnosis but now it scares the willies out of me. It disturbed me to learn that my tumor was 3.5 cm instead of 2.5 cm. That should be just a little thing but it’s not to me. That extra centimeter puts me in a lower survival category and I don’t like it.

I met with my breast surgeon Monday afternoon for a follow-up exam after the port removal surgery. I prepared a list of questions and finally got to ask her why certain things were done the way they were done.

Why, for example, was it so freaking important to induce Kelric to come early? He was only a few weeks away from term. Why couldn’t we wait it out?

I asked this question knowing from Dr. Susan Love’s book that it is common practice to deliver the babies early when the mothers have breast cancer. On the other hand I’ve met women who delayed the start of their treatments by four weeks or so. I know that every case is different but why did we have to deliver Kelric early? It wasn’t that Kelric was harmed in any way by an early delivery. It’s that we had several less weeks to prepare for his arrival than we were expecting to have and that threw our household into chaos and made our son’s arrival a mixture of joy and great sadness.

Her answer was that the baby was far enough along to be safely delivered early and she needed him out before she could perform the sentinel node biopsy surgery because that required general anesthesia. The surgery to check for cancer in my lymph nodes was important for staging the cancer, and learning what stage I was in affected the treatment I was given. Frankly, she said to me, she was surprised that my lymph nodes were negative for cancer. Given the large size of my tumor (and the fact that the pathology report showed signs of invasion of cancer into my bloodstream and my lymphatic system), it was almost certain that the cancer had spread to my lymph nodes. She was shocked and happy to see that it hadn’t spread yet. In retrospect I’m happy that I had a surgeon who was skilled enough to use the sentinel lymph nodes as a statistical sample of cancer invasion. It’s a much more difficult surgery than taking all the lymph nodes and checking to see which ones had cancer and which ones didn’t.

Putting the port in my arm is a more difficult procedure as well, per the book by Dr. Love. I seem to be the only one with a port in my arm in the growing number of survivors in the Pink Ribbon Cowgirls group. All these women who have or had ports in their chests ask me why mine is in my arm and I didn’t know why until this week.

My surgeon has a personal preference to put ports in the arm. She said most doctors around Austin prefer the chest but she prefers the arm. It’s one less scar on the chest, for one thing. I know other women have told me with young children they get bumped by their little ones and it hurts. Kelric only bonked his head on my port when I’d be foolish enough to put his head on that arm.

I mentioned that I had problems with blood clots with the port in my arm. She said that’s a risk of ports in the chest, too. Clots and infections are the common risks of ports. Guess I’m lucky I didn’t get an infection there.

So what color was the tumor? I asked. Guy told me the surgeon could tell by looking at the tumor that it was cancerous. What color is cancer? It’s tan, she told me. She could tell it was cancer by the color, the size, and the way it was intruding on the tissue around it.

I asked what happens during the follow-up visits once my treatments are over. She said I’ll alternate between her and my oncologist Dr. Kampe, seeing one then the other every four months for the next three years. If my cancer has not come back in the next three years, then I will have reached an important milestone and the odds will be that it will never come back. After that, I’ll see one then the other every six months for the rest of my life. That way, between the office visits and regular mammograms they’ll keep a close eye out for recurrence.

What about scans? I asked. She said scans are used to diagnose symptoms. If I have no symptoms, then there’s no need for a scan. Scans cost money, so I’m relieved not to have them on a regular basis.

I finally got a copy of the final pathology report and I asked questions about what different terms meant. It felt good to understand things a little better. She put the 21 copies of Pink Ribbon Cowgirl flyers I had brought with me in one of the flyer dispenser containers on a wall of brochures and flyers. Maybe we’ll get new members from that. I hope so because the group is helpful to me.

I learned that my breast surgeon specializes in breast cancer. That’s all she does. I think my obstetrician sent me to her to rule out cancer as a cause for my lump. The preliminary ultrasound scans showed only fluid at the time, not a mass of any kind. Everyone was surprised on the day of the surgery when we learned it was cancer. As scary and awful as it was, I am grateful that the diagnosis didn’t get delayed for several months.

I keep telling Guy I want him to take a picture of my face very soon. When I first told him this I had 8 eyelashes on an upper eyelid and one eyelash on the lower one. The other eye had something like 12 lashes on the upper lid and 1 on the lower lid. Now I have no “adult” eyelashes on my lower lids. I have only “baby” lashes growing in. I’m down to one lash each on the upper lids. The “baby” lashes are short and pale, but they are slowly growing in and replacing what I’ve lost. Wish they’d hurry up. Guy says my faces looks “wrong” in a subtle way. The lack of eyelashes and the shadows they create mark me as surely as the short fuzzy hair that I’m a chemotherapy survivor. Only my wig doesn’t hid the eyelash business.

Well, enough about that, eh? So it’s been a tough week. I’m getting through it. I’ll get a break Saturday and Sunday. No radiation on weekends. And I’m having fun with my work lately, finally getting to dig into interesting projects with exciting potential for improving the way people work at our company. This week marks my first week back to full time hours, though radiation cuts into my schedule enough that I’m having to work an hour a day from home to make a 40-hour week. Still, I have normal amounts of energy finally and that’s a nice change. Last weekend I started reading articles on www.quackwatch.org and they were very interesting. My oncologist told me that’s one of his favorite web sites. I learned lots of interesting things there but this e-mail is long enough already.

I’m trying to think of a theme for a party to be held sometime in October to celebrate the end of cancer treatments. I would love to rent a hall and have dancing and live music, but we can’t afford that so I think I’ll host some kind of open house on a Sunday afternoon instead.

Guess I’ll have to think on it in my sleep. I’m going to bed now.

Cheers,
Angela

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36 E-mail: port removal surgery and insurance error

2006-09-04T21:59:00.001-05:00

7/24/2006

SURGERY

This morning, bright and early, Guy took me to the hospital and my breast surgeon removed the port from my left arm. Before surgery the anesthesiologist tried to put the IV in first my left foot and then my right foot. When that didn’t work he gave up and put it in my left hand where I expected it to go initially. The surgery itself was quick – about 15 minutes – and my stay in the recovery room was short. We left and ate breakfast at a new little deli before going home. Then we slept for several hours.

Now it’s evening and my arm finally began hurting maybe a couple of hours ago. I’ve started putting ice on it and taking pain medication so it’s not too bad. Tomorrow I’ll be able to take compression bandage off and resume normal activities. It looks like this week I will finally return to work full time. I’m looking forward to that. My life is slowly returning to normal and that feels good.

INSURANCE

I had an experience today this afternoon I thought might be useful to share. I checked the latest claims online that were processed by my health insurance company. I noticed a $30 copay for my last visit with my oncologist and a separate $30 copay for my last infusion. That didn't make sense since both events occurred on the same day. So I called the claims department and asked about it. Turns out that it was an error. The insurance company had assigned separate copays because they had received the paperwork on different days and didn't realize they were for the combination of oncologist visit followed by infusion.I asked if this had happened before. The claims agent looked back over all 8 of my chemotherapy treatments. Twice before this had happened, so all three mistakes were corrected today and now my insurance company will pay the cancer center $90 that the cancer center had billed to me. I think I missed the first two times the billing mistakes happened because I was too tired or too busy (or too overwhelmed). It's hard to read the fine print when you're feeling wretched from side effects! $90 may be a drop in the bucket of the combined bills, but every little thing that reduces the amount we owe helps. It's hard to find the time, but it pays to question things that don't make sense. I'm so glad that this time it paid off! :-)

PERSPECTIVE

I’ve read that breast cancer tumors double in size roughly every 100 days. I finally got a copy of the full pathology report when I visited my breast surgeon’s office last Friday. My tumor was “at least 3.5 cm” rather than the 2.5 cm I thought it to be. If we hadn’t caught it until Kelric was 3 months old, the tumor would have likely been closer to 7 cm. At 6 months the tumor would have been around 14 cm. That’s huge! And it’s scary. Anything larger than 5 cm is considered to be Stage III breast cancer. Stage III has lower survival rates than Stage II. My cancer was Stage II even at 3.5 cm and I feel even more grateful that we caught it when we did.

Another thing this week that reminded me that things could have been worse is a tragedy that happened to one of my co-workers. Her husband was killed early last week in an auto accident. She has two children under the age of 10 and now her husband is suddenly gone. No chance to say good-bye. No chance to say I love you. Just the sudden ripping feeling of a limb being chopped off.

I like this co-worker and I am so sad for her loss. I am also immensely grateful that I still have my husband. Cancer is scary and treatment is difficult, but at least I have an excellent chance of getting through this diagnosis and living a full and healthy life with my husband at my side. I should get to see our son grow up and enjoy his company when he’s an adult. This has never been a contest of who’s circumstances generated the most pain. Still, knowing that someone I care about has lost a spouse reminds me to keep my cancer in perspective. A Stage II diagnosis is not the end of the world. Compared to losing Guy, chemotherapy was a walk in the park.

Angela

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35 E-mail: after chemo - before radiation

2006-09-04T21:59:00.000-05:00

7/20/2006

Today is Thursday. It is the second Thursday after my last round of chemo, and the first time in months that I haven’t had chemo on the second Thursday after the last round. I think it’s also the first time in months that my body has been able to fight the latest infection threatening to make me sick. I’ve got a cough that came from a sore throat two days ago, but other than that I feel pretty good.

The neuropathy in my fingers is almost gone. It’s taking longer to fade from my toes and my face is breaking out one last time, but I’m not nauseated anymore. That means I don’t need to take the anti-nausea medication and that means my continual battle with feeling light headed is over. I think it’s funny that it took me all 8 rounds of chemotherapy before I figured out that my precious Zofran pills were making me light headed. Now my private pharmaceutical collection can be reduced. The bathroom countertop is going to look empty pretty soon.

The hair on the back of my head has gotten just long enough for the fuzz to become soft. It’s still sparse at the top of my head and the hairs are so pale that I can only see them if I turn my head just so. During the times when I see them, though, I feel waves of happiness. Then I look at my thin, thin eyebrows (and more eyebrow hairs fall out every day) and my missing eyelashes and I wonder when those will grow back. I have one eyelash apiece on the lower part of each eye. I’ve got more than one lash on the upper part but there are obvious gaps. Soon the stripes in my fingernails will start growing out and the outward signs of cancer treatment will be hidden.

Some days I feel comfortable going bald in public. I’ve picked up Kelric from the Montessori school bald. The children stared but the adults didn’t. I’ve shopped at Central Market bald. People looked at me maybe a second longer than usual but nobody gawked or made me feel self-conscious. I always feel a little weird, though, whenever I’m out in anything but my wig. I’m part of a certain population now and I would rather chose who knows about it than have my head broadcast it for me.

I think back on all the messages I’ve sent out where I remark on my hair or absence of hair. I know that it bothers Guy constantly that his hair has thinned out and he’s mostly bald on the top of his head. It never stops bothering him no matter how many times I tell him that I don’t care (I really don’t) or how many times I tell him I think he looks handsome (I really do). Now that I’m bald he challenges me, “Now do you understand?” Sadly, I do. I think our hair is part of our personal identity. I remember feeling beautiful when I had good hair days. I don’t feel as pretty without hair. I miss that “good hair day” pick-me-up. My chief excitement now is that I get to use shampoo and conditioner again for my new fuzz, even though the amount of shampoo I need is less than a pea-sized dollop on my finger.

Last week I finally got angry about having cancer. I went through several days of depression after my last chemo. It was disorienting at first to be released from the routine of chemo every other week yet still feel the nasty side effects from my last treatment. Taxol interfered with my ability to feel when I was hungry or full, so I ate too much and gained weight. The weight gain added to my depression, and I got mad at myself for feeling depressed. Then I felt impatient to get radiation over with and I felt especially impatient to get the last chemo’s side effects over with. I get hot flashes nearly every day now and each one is a reminder that I’m a cancer patient and I’ve just gone through chemo and my reproductive system has shut down. It’s a grim pleasure seeing the shock on a nurse’s face when I am asked, like I was yesterday, for the date of my last menstrual period and I quote a date from a year ago. Oh yeah… There was a baby followed by chemotherapy. The shock is always followed by chagrin. Inside, I quietly snicker. If I have to live it, at least I can be allowed a snicker at someone else’s discomfort, right? I’ve always hated that question at doctor visits anyway.

So last week I was depressed, angry, and impatient. In short, I went through a normal phase most people go through after chemo. You’ve been surrounded by this team of compassionate medical people who are very concerned about your battle with cancer and how you’re feeling and coping, and then you don’t see these people anymore and they don’t have much reason to continue asking how you’re doing. What’s I’ve read is that the most common thing people feel after chemo is a sense of, “Now what?” Is the cancer really gone? How will I know if it comes back if the medical people aren’t paying such close attention anymore?

I didn’t think I would go through that, but last week got me seriously thinking about going to a therapist. This week I’m much better.

Last Saturday Guy and I celebrated our wedding anniversary. We stayed at the Baines House, a bed and breakfast in Salado, Texas. I rented the Seaberry Cottage which gave us a private building apart from the main house and a private garden in front of the cottage. It was quiet, dark, and peaceful out there. We went without a plan other than where we would sleep, and we found a very good restaurant for a special anniversary dinner and we entertained ourselves in the afternoon by visiting local art galleries. I’ve had my fill of bluebonnet-filled landscape paintings for a while, that’s for sure. We relaxed. We napped. We read books. We talked. We reconnected as a couple and enjoyed our time away from home. My mom stayed at our house and looked after Kelric and we quietly celebrated our five years of marriage and didn’t worry about our son. I called, once, and was happy to hear that Kelric loved his bath and went to sleep at the regular time. In the morning we enjoyed a fabulous breakfast at the B&B and enjoyed the strawberry shortcake they served as dessert.

The night before at our fancy dinner I had a dessert which was absolutely phenomenal. It was a chocolate pudding cake with banana ice cream. I almost always gravitate towards vanilla-flavored desserts instead of chocolate, so it was a departure from the norm for me to try a dessert like that but I’m so glad I did. I started crafting a poem about dessert while I was eating mine, and I wrote it down before I went to bed that night. Since the B&B owners advertise that they always serve dessert with breakfast, and since they left a little book in our room with blank pages where people who have stayed there have written about how nice the room was and how good the breakfast food was, I decided I write how nice the room was on one page and my poem “Dessert” on the next page. That was fun. Then we returned home and somehow life became more bearable. That short time away from all the stress was just what I needed to find my center again. Feeling carefree and special with my husband in an unfamiliar town was a good thing for both of us. It felt like a brief second honeymoon.

Now it’s Thursday, July 20th and life and cancer treatments go on. That brings me to yesterday’s initial consultation with my radiologist, a Dr. Timothy Dziuk (pronounced “Juke” with a “Z” sound instead of a hard “J”). He asked who my surgeon was. I told him Dr. Kelly Martinez. He responded that she is very good. Dr. Dziuk is not the first person to tell me that I got a good breast surgeon, so I’m glad that my obstetrician recommended her and I’m glad I went with that recommendation. Dr. Dziuk confirmed that my oncologist Dr. Carsten Kampe referred me to him. I got very lucky when I randomly picked Dr. Kampe to be my oncologist. Not only is he a nice person who is dedicated to his field of medicine, but he is also a meticulous note taker who has compiled a very thick, very useful file on me. Dr. Kampe never made me feel rushed during our visits before each chemo, even when I had a lot of questions. He seemed to like it that I did my own reading and research and then came back prepared with notes and questions, and he seemed to like it that I wanted to understand why he selected the treatment he selected and how it would help me.

I believe I wrote last time that I hoped I qualified for a new kind of radiation treatment but I didn’t want to give details for fear of jinxing myself. Well I needn’t have worried. I failed to qualify for the new kind of treatment and it was never an option for me.

The new treatment is called Mammosite. This type of radiation involves a catheter inserted into the breast through the cavity left by the lumpectomy. A balloon is inflated from the catheter to fill the cavity and then a radioactive pellet is inserted through the catheter tube and into the balloon. The pellet remains there for about 20 minutes and then it is removed and the balloon is deflated. You do this in the morning and afternoon for five days of treatment and you’re done with radiation. You don’t have to worry about the fatigue or skin reaction that’s similar to sunburn that are common side effects of radiation. The catheter remains in the body for 7 to 10 days and then is removed with local or no anesthesia. I really, really wanted this treatment because I want my non-cancer life back. Now.

No, that would be too easy. I get to look forward to 33 treatments of radiation once a day, Monday through Friday, beginning August 1st and ending September 15th.

I don’t qualify for Mammosite for many reasons. First of all I’m too young. They prefer to treat women who are 45 years old or older. I’m 35. Also, the size of my tumor was too big. Tumors should be 2 cm or less for Mammosite. Mine was at least 3.5 cm according to the report the radiologist had. I was sure that my tumor was 2.5 cm according to the report my oncologist had, so now I’m very curious as to which office has the typo. Tomorrow I’ll meet with my breast surgeon to plan Monday’s surgery to remove the port. I’ll ask her what size it was and see if I get an answer that makes sense.

The location of my tumor is in the wrong place for Mammosite radiation. The balloon stretches the skin. To avoid radiation burns there has to be a minimum distance between the balloon while inflated and the skin and my tumor was close to the skin and on the upper part of the breast, so my skin would be stretched too thin with the balloon inflated if I had the Mammosite treatment. Oh, and I’m forgetting that my cancer was too aggressive and we’ve waited too long to begin radiation for the Mammosite program. Aggressive cancer cells replicate faster and travel distances faster throughout the body. Because my cancer was of the aggressive variety, (it was a 9 of 9 on the Bloom Richardson scale) it is possible that microscopic cells left behind from the lumpectomy have traveled to other parts of the breast. That gives me a higher chance of recurrence elsewhere in my breast and not just at the site of the lumpectomy.

I suppose I should mention here that chemotherapy, for reasons that baffle oncologists, does not seem to kill all the cancer cells in the breast that held the original tumor. Chemo does a great job at killing cancer cells everywhere else in the body, but not in the breast tissue. Chemo can shrink the size of tumors that are in the breasts. In fact chemotherapy is sometimes used as a pre-surgery tumor shrinking strategy when tumors are too large to remove. In my case that wasn’t an option since my lumpectomy was unplanned and the cancer wasn’t discovered until the surgeon was removing what she thought was a mass brought on my pregnancy hormones.

A Mammosite treatment of radiation would not travel far enough in my breast to kill cancer cells that could have spread to the parts farthest away from the tumor. Also, since I’ve had chemotherapy first and not radiation first, the cancer cells have had more time to travel and would therefore be farther away than if I had had radiation first. They don’t wait longer than 3-4 weeks after a lumpectomy before beginning Mammosite treatments and my lumpectomy was several months ago.

The good news is that my chest seems built for traditional radiation treatments. I don’t have any curves or swells in my torso that would cause them to have to irradiate more than a small portion of my lung while they position the radiation to get my entire breast for 25 treatments. 8 treatments will not penetrate through my body and they will be aimed only at the site of the lumpectomy. The 25 entire breast treatments of radiation, however, will pass through my body and they will get the upper 10 percent of my right lung. I can expect that part of my lung to stop functioning. I can also expect my ribs to become brittle over the years, so I will be more likely to get a rib fracture on the right side of my chest than my left side. That’s the bad news. The good news is that there is a 30% chance of recurrence if I skipped radiation and I’m drastically reducing that risk by enduring the 33 treatments. I think it’s a fair trade.

On July 31st I will go in for a CT scan but I won’t have to drink the barium sulfate nasty stuff and I won’t have to have the IV for the iodine contrast agent. Instead, I’ll just lay in the CT machine and the manual process which used to take an hour with technicians taking measurements and marking up my body will only take about 10 minutes. The machine will create slides of my breast and the radiologist will compile those slides into a plan that will show where to position the radiation machine. I’ll get marked with dots which I will have to re-mark every day with a special marker if they wash off in the shower. I’m allergic to tape now. I laughed when my chart showed it. Dr. Kampe is very thorough with his notations and that little detail made it to the chart passed along to my radiologist. It’s unfortunate but true; a bandage with traditional adhesive will cause a red mark on my skin that takes over two weeks to heal. So while they would normally use tape somehow to show where the dots go, they won’t use tape on me. That puts me at risk of possibly having to get the dots tattooed onto my chest – an older procedure that I wish to escape. I plan to be real good about keeping the dots visible with my special marker.

Everything I’ve read says that in radiation you have to avoid using scented soaps or deodorant because the metals will interfere with radiation. My radiologist told me that’s the way it used to be and I don’t have to change a thing about my routine. I am so relieved.

I’m also tired. It’s 10:35 p.m. and I should have gone to bed half an hour ago!

Good night,
Angela

P.S. Kelric has discovered that he has feet. His new favorite pastime is holding his feet, which is incredibly cute but makes changing his diapers challenging. This evening after his bath he managed to put his own arm into his sleeve while I struggled to get his foot into his little bear-covered pajama footie. What an amazing baby! Okay, I know it was just blind luck, but it was cool nevertheless!

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34 E-mail: #8 of 8 - final chemo!

2006-09-04T21:58:00.001-05:00

7/9/2006

Last Thursday was my final round of chemotherapy. Hooray! Now all I have to do is get through the next two weeks of side effects and then my body can start to return to normal.

I had infections during the “odd” Taxol treatments (#s 1 and 3) that sent me to the hospital both times. I did pretty well with the “even” treatment (#2) and so far I’m doing well with #4. Last night the backs of my hands were tingling and my muscles hurt pretty much everywhere if I put any pressure on them. It was odd. The tissue above my collarbone hurt, as did my neck, my shoulders, the top of my head, my back, arms, and thighs. Guy pointed out that the Taxol was working its way through my system again and I believe he was right. It started in the center and spread out, then the pain went away overnight.

This morning I had scads of energy so I did a thorough job of vacuuming the music room and I tackled the piles of laundry. I washed the dogs’ food and water bowls and made breakfast. This afternoon I vacuumed the kitchen and the stairs. I had hoped to get the living room and upstairs rooms but that may have to wait. I’ll get tired, rest, then get another surge of energy whereupon I’ll work like mad for a bit and then get tired again. Guy has warned me not to overdo it. I’m trying not to overdo but it’s so nice to feel good now and then that I just want to dive into all the projects that had to wait while I was too tired.

My latest project I’ve started for fun is reading a book titled Business Calculus Demystified. The first part of the book is a review of algebra. I’ve started at the beginning and I’m working my way through the exercises. Some of this stuff is familiar and some of it I’m having to memorize all over again because I’ve completely forgotten it. Some of it is surprisingly easy and that is really fun. Guy is a little freaked out that I’m having fun with a calculus book, but hey – we can’t all be talented artists with heavy right-brained abilities. I’m intrigued that calculus could have much of anything to do with business math. It will be interesting to see if any of it applies to my job down the line. My left brain is singing with anticipation. My right brain has been writing poetry so my head is overall a happy place over mental challenges.

Speaking of my head, Guy says the pale blond hairs at the back of my head are beginning to curl slightly. Taxol has made my hair grow VERY slowly. I imagine after it wears off in two weeks my hair will return at the typical half inch per month rate that most people’s hair grows.

Now I get a three week break before radiation starts up. During the next three weeks I’m going to celebrate our five-year wedding anniversary with my husband (next weekend). I’ll meet with the radiologist the week after our anniversary and discuss the details of my radiation treatment. A couple of days after that I’ll meet with the breast surgeon for a checkup and a confirmation of the surgery July 24 to remove the port from my arm. Then the port comes out (Hooray! Hooray!) and presumably in August my radiation begins.

What has been described to me initially is a treatment plan of getting radiation every Monday through Friday for 7 weeks straight. The main side effects I expect are fatigue that gets more pronounced as the radiation treatments go on and possible (probable) sunburn to the site that receives the radiation. A temporary thickening of the skin can also be expected.

I’m glad that Guy accompanied me to my chemotherapy treatments and pre-chemo visits with my oncologist. I had already forgotten this detail but it came up in conversation today at lunch. I can expect to return to the cancer center to see my oncologist every six months for the next five years as a follow-up “let’s make sure the cancer hasn’t come back or metastasized” visit. That’s a cheerful thought, eh? At least they should catch any kind of recurrence early if I’m being watched so closely. It’s comforting in a spooky sort of way.

I feel a little bit adrift now that I’m no longer staring at more rounds of chemotherapy. I was so excited about reaching this point last week before I got here. Now that I’m here I’m not sure how to feel. I’m grateful that the dread of the next treatment is gone. I’m annoyed that I still have to suffer through this round’s side effects before I feel good again. I’m excited that my hair is growing back, the neuropathy should fade away over the next few months, and perhaps over the next year or so the early menopause I’m now experiencing will reverse as well. I’m getting really tired of hot flashes. I’m impatient to return to feeling normal nearly every day instead of once in a while or for only part of a day.

If I focus on the positives I start to cheer up. I’ll have energy again! I’ll get to drop the dietary restrictions! I won’t have to go to the hospital if I start running a fever! Pretty soon I should be able to return to a 40-hour-per-week work schedule (and a full salary again) and then the medical bills that have stacked up won’t be as depressing. No, that’s not quite honest. The medical bills will still be depressing, but returning to being able to pay the regular bills without as much juggling will be a welcome change.

Thank you again for the e-mails and cards, the jokes and phone calls. Thank you for the baby sitting and the meals and the love and support. Thank you for listening and for reading and for passing these updates along to others who care. I’ll continue to write and let you know how the next phase goes, but today is a landmark and it needs to be acknowledged. This journey began in late January when I first noticed a lump that hurt. We spent February trying to figure out what the lump was and we spent March trying to figure out how best to treat what we learned was cancer. It’s early July now. My son turns four months old next Thursday. This has been one hell of a journey and I’m so very grateful I didn’t have to travel alone. Thank you for being there.

Angela

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33 POEM: Awakening of the Tiger Woman

2006-09-04T21:55:00.000-05:00

Awakening of the Tiger Woman

One more to go.
Only one.
I’d do it tomorrow if they’d let me.

So close I can taste it.
Almost done.
An end to the poisons that get me.

Yesterday’s sorrowful tears,
bitter in fears and pain,
are tasting sweet today –
anticipatory joy.

Soon.
Soon my body will return to something familiar.
It’s become a stranger
with
striped fingernails
and
thinning eyebrows,
sudden fatigue
and
nausea
lurking in random moments –
night sweats
and
mangled taste buds.

Did we kill the nasty cancer?Was it worth the months of chemical hell?
Only Time will tell me – slowly.

Father Time, befriend me!
Let me ask for fifty years if it’s gone.
Yes, that’s it! Let me ask
for fifty more years
if it’s really gone.

I can do a lot of good in fifty years.
I can help a lot of people.
Hold hands while another’s tears grieve cancer fears.
Create comfort by sharing my story.

In this heart beats a tiger woman.

Sometimes tired and sometimes sad.
Focused on survival.
Protecting her cub.
In this stranger of a body
with bloody noses,
dry skin,
numb fingers,
numb toes,
the mind emerges intact from a chemical-induced fog.

I’ll submit to serving as pincushion, but I refuse to be a victim.

One more treatment left to go…
Only one.

I’ve survived the surgeries
and the complications,
the side effects
and the sympathetic stares.
I’ve survived the well-meant bad advice
from loved ones who care.
I’ve survived simple sickness turned scary
with hospital trips because nothing is simple now.
I will continue to bounce back.
I will continue to get well.
Without hesitation
I will hold my bald head high
on strong shoulders
and plan my life – thriving – for the next fifty years.

I don’t care why this happened.

I only care how it has added to my appreciation
of everything in this world that is
beautiful
and
selfless
and
compassionate.

I will emerge from this long, dark tunnel of treatment
stronger than ever.
Tiger stripes in my nails.
Loving fully.
Protecting my cub.
Rejoicing that my mate still kisses my lips
and rubs my fuzzy head,
and sees the beautiful woman I am.

Written by Angela Patterson
Copyright Angela Patterson 2006

6/29/2006
This is the first poem that I wrote last Friday night during the Jimmy LaFave concert.

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