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
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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?

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

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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