66 Choices Part 1: Hair

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

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?

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64 Grandpa Metastatic

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.

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63 Anti-Genetic Discrimination Bill

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

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Previous - 62 When Is It Over? Moving On

62 When Is It Over? Moving On...

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.

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61 Poetry and Other Things in 2007

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

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

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
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