The Last Installment of Bald

So my baldness has gone from "New York chic" to "cancer fuzz". My students roll with laughter everytime I compare my head to a chia pet. As this fine dark baby fuzz emerges on my head, I thought I'd share the last installment of hairless photos. I call this part of my life "Bald."

Right before chemo #4

Last chemo. I learned this pose from my students in Chicago. It's their favorite.

Weekend after chemo. Still bald, but not feeling as bad a I usually do.

Better than the fuzz...

Peace rally in San Rafael. I was warned not to sunburn my head.

Thrush?

I saw Garrett today. I have not been able to eat spicy food for the last month because I have thrush! Translation: yeast infection of the mouth, brought to you by chemotherapy and a depressed immune system. Got drugs from Garrett and will boost up the probiotics. Should clear up in a few days.

Received a lupron shot and started arimidex (daily pill). We will see how this goes over the next month... I'm already not a fan of hot flashes.

BRCA...

negative!!! Today I found out I'm not carrying either of the genetic mutations for breast cancer (BRCA 1 and BRCA 2). This means I cannot pass it on to a daughter, and that I do not have to worry about being at a higher risk for ovarian cancer. It's nice to get good news once in awhile.

Thanks to Liz

Before I start to make dinner (chana masala, not too spicy), I would like to pay homage to my wise friend Liz for her willingness to reassure me that I am normal. In addition to her card that boasts a piece of artwork aptly named "Begin," she sent me an article she recently read in Organic Style titled "Finding the New Normal." An article that reassures me my rather disconcerting post-treatment experience is certainly not unique. Apparently, I'm not the only who wasn't moved to dance under the stars shouting "Halleluiah!" after chemo was over. Who knew?

If you'd indulge me for a few moments, let me share three quotes...

1. "When treatment ends, a woman's experience with breast cancer is far from over. Survivors leave their last chemo or radiation session expecting to feel triumphant, only to find themselves facing continuing physical and emotional issues... For most, there is not formal support system, and they find themselves struggling on their own to find the new normal."

("New normal" is a favorite BC phrase.)

2. "Breast cancer treatement often takes a heavy toll--with side effects that can last for months, even years. Hester Hill Schippner, chief oncology social worker at Beth Israel Deaconess Medical Center in Boston, author of After Breast Cancer: A Common-Sense Guide to Life After Treatment, and a breast cancer survivor says, 'I tell my patients to give themselves at least as many months as they were in treatment to really feel well again.'"

(This second quote is really more for me. In some ways it gives me "permission" to continue with what intrinsically feels right--to maintain a 4 day work week and take Fridays off for the rest of the school year.)

I'll spare you the details about chemobrain, a sufferring sex life, and fertility issues that follow, and go straight to the final quote that struck a cord for me:

3. "As awful as having cancer can be, while in the midst of it, you're doing something aimed at killing the disease. It's clear there's a task to be accomplished, and that's reassuring. At the conclusion, there's nothing to do except wonder how to live this life you got to keep, how to prevent recurrence so you can keep it longer."

Wow. Isn't that the truth? I don't actually mean it as a question. Right now, that's a pretty good summary of my truth. As I sit here, enjoying a beer, I know it is the first of only two drinks I should have each week. I know when I meet some old friends for dinner tomorrow, I'd like to have a second. That's it and it will only be Tuesday! I count fat grams. I have to eat less cheese and avocado. I've started ordering my occasional lattes with skim milk. Not in that dumb girl sort of way. But in the "reasearch is showing a clear correlation between lower breast cancer recurrance and a diet that does not include more than 20% fat" kind of way. And the research is good.

I want to give myself the best chances possible. But I also hold the knowledge that cancer comes back. It comes back when it's "not supposed to". It comes back even when you do everything "right." I'm in contact with enough other cancer survivors to know that this is true. Cancer is a persistent mother fucker. You become familiar with phrases like "mets to the brain" or "mets to the bones". The book Nordie's at Noon should come with a warning--two of the four young women initially diagnosed with early stage breast cancer die. One by the end of the book, and one after the book was published. That read put me in a funk for at least a week.

This doesn't negate that in this moment, and in the big picture, I'm feeling really good. It just reminds me, reminds all of us, that "surviving" cancer is not a simple task. Maybe Katie said it best, "It's not like it's something that just gets turned off the minute the chemo drip does."

Thanks to Liz and many others for being willing to hold this with me.

To survival, patience, and love...

Drove up the Sonoma coast to have dinner at River's End. Local seafood, a glass of wine, gorgeous ocean views... Too foggy to catch the sunset, but a much needed evening out.

Now That Chemo is Over...

Now that chemo is over, what I'm really wondering is when I'll be able to eat spicy food again. I forget that I can't. I indulge in the chips and salsa at one of our local Mexican restaurants and spend the rest of the meal sucking on ice chips because my tongue is on fire. And again lastnight. After class, I treat myself to a sushi dinner. I order our favorite "melts in your mouth" Hiro's Roll. Except it has SPICY tuna in it. Two bites in I realize it would be torment to try and eat any more. Even my toothpaste is too strong. Mom, seriously, how do you live like this?

Although it didn't come with the ecstatic joy I think maybe I was expecting, I am thankful to rid myself of the beast that is chemotherapy. It had its way with me and has now dumped me in the gutter with countless other women. I've yet to be able to envision chemo as something that potentially was saving my life. I failed miserably at the common cancer visualizations that have you imagine a pac man-like creature eating cancer cells (or in one woman's case a bunch of swans eating plankton). The only visualization I could successfully muster was a protective bubble around my ovaries that said something like "Not here mother fucker."

It is difficult to see chemotherapy as an ally. Which is why, in part, I gleefully turned down the option of 4 more rounds of taxol (a different chemotherapy drug that now often follows AC). Ofcourse, I did this only with my oncologist's blessing. I will swallow poison only if it has the potential to do more good than harm. Makes sense, yes? Garrett estimates the benefit of taxol for me at less than half a percent. No thanks. I feel like I've done my time. Anyway, I like my eyebrows.

Did you know that in China, they actually actually allow (encourage?) doctors to "try out" the different chemotherapy drugs so that they better understand the side effects that their patients are describing? Yes, my acupuncturist (who was trained in China) has dabbled in the cyclophosphates, among other drugs. Not allowed for experimentation, however, is adriomycin; it's considered too dangerous. This is the "A" in "AC" that has been pumped through my veins for the last 3 months. Potent. Toxic to the heart. You can see why I feel like I've done my due time with chemo.

What does the future hold? On a very pragmatic level, I will see Garrett once a month for lupron injections (the drug that will continue to suppress my ovaries) and will start taking arimidex, a drug that is an "aromatise inhibitor." It prevents the conversion of androgens (typically known as the "male hormones," but are produced in small amounts in women by the adrenal glands and the ovaries) into estrogen. Basically, I will not have a single drop of estrogen in my body. My cancer was highy estrogen positive, which means it fed on estrogen. This therapy has been proven more effective than Tamoxifen in postmenopausal women, but they are still studying if this translates to younger women who are made post-menopausal. I'm on the cutting edge. Hot flashes at 29.

Want to know more?

http://www.dslrf.org/breastcancer/content.asp?CATID=19&L2=1&L3=6&L4=0&PID=&sid=132&cid=635

http://www.cancer.gov/clinicaltrials/results/ATAC1204

In addition, I will have bloodwork done every 3 months (I suppose this is better than every 3 weeks) to check on "tumor markers," elevated levels of certain proteins that can be an indicator of cancer in the body. Breast MRIs (had my first last Friday). And bone density tests (DEXA scans). Loss of bone density is a big concern with menopause, but particulalry with early, induced menopause.

On a more personal level, I don't feel quite ready to re-emerge into my life just yet. In fact, I've been feeling rather out of sorts. The other day I received an e-mail from Living Beyond Breast Cancer for a workshop titled: "My treatment is over: Why do I feel so sad and alone?" A propos. I imagine this will pass. In the meantime, patience.