Saturday, August 19, 2006

The new chapters open

It would be nice if ending chemo meant ending treatment altogether; ending the "cancer experience" and moving on with life. Alas, it is not so.

The final phases begin now. Radiation will start August 28 and last for 6 weeks; my nutritional intervention--let's call it that for now--started nine days ago and could last for months, if not years.

We went to the radiation oncologist ("rad onc" in oncology ingroup-speak) yesterday. The good news, since radiation treatments are 5 days a week during the 6-week period, is that I will go to a hospital in the South Bay, just 15 minutes away, rather than to USC. On the other hand, I was diagnosed and have gotten all of my treatments to date at USC. I feel an odd sense of dependence on that facility, and I feel uncertain and hesitant about going somewhere else. At the beginning, Noah and I weren't sure we would build a good rapport with the medical oncologist, Christy. In the end, I feel that Christy--along with Michelle and Lilia, the great nurses, and even Dean, who drew my blood perfectly week after week--was enormously caring, and we developed personal relationships and a strong sense of bonding.

The rad onc--an older male physician who did not invite me to call him by his first name, but for the sake of relative anonymity here I'll call him "Tom"--had a meeting to get to, and had a specific order in which he covered issues and gave his spiel, and questions were put off until their appropriate place in the spiel. He was professional but distant, and I won't see that much of him anyway. "Doctor days" are on Tuesdays, so I will see him on that day each week. (As for the fact that that's my long teaching day and thus the worst possible day in which to try to force in another appointment--too bad.) Most of this is psychological--Tom was recommended by my own providers at USC--and I am confident that I will receive top-notch care. But it's a difficult transition. When you are putting faith in people to save your life, I think you develop a bit of bias about them, and it's hard to feel like anyone else could possibly measure up.

So...radiation. The procedure itself is totally painless and quick. I go in Monday for a set-up appointment, where after numerous x-rays and CAT scans and lying with my arm over my head, the physicists will map out the correct angles for the machine to shoot radiation beams through my breast without hitting my heart or much lung. I'll get 2 to 6 tiny blue-dot tattoos in a square configuration to mark where the machine will line up. And I'll get instructions like, don't use deodorant (Tom's of Maine is OK), don't use talc, do use lots of this particular special moisturizer.

When I go in for each daily appointment, I'll lie back in exactly the same position (they use a foam mold to hold my arm in place, and the blue dots for alignment) while the technician spends about 5 minutes getting all the machinery set. Then, for about 2 minutes, the shooting of beams. That's it. This facility is apparently pretty good about getting people in and out, so overall there may be little impact on my days. Of course, it looks like I'll have to go in in the morning, and anyone who knows me knows that's a problem. For 6 weeks, 5 days a week, getting up early? Yikes.

The side effects are supposed to be fairly minimal, but so far every woman I know who's had radiation (there are several in my support group) reports at least some degree of burning. One had 3rd-degree burns. Seriously. Forgive a graphic moment--she had blood and pus oozing out of the area being radiated, and had to apply burn dressings all the time. They didn't stop or delay treatments, either--just kept going, and kept burning her.

No one else has reported anything as dire. In general, radiation seems to produce a sunburn by about week 3, and it gets progressively worse until a couple weeks after the end. Constant moisturizing and vigilance against scratching (which will be hard for me) are apparently key to minimizing trouble. I've gotten advice to wear very soft shirts and to eschew underwire bras--I don't think I've ever seen a bra in my size without an underwire, but they apparently exist--and to apply cortisone cream for the itching. Though fatigue is a standard side effect of radiation, "they" say that it's minor compared to chemo, and that post-chemo patients still just report feeling better and better as chemo recedes into the past.

So radiation will occupy my next 7 weeks; even longer than that will be The Diet. Way back when I got my 2nd oncology opinion, the doctor (very prominent nationally) recommended that I eventually work with the "nutritional oncologist" at her practice, who was part of a large multi-site study of nutrition and breast cancer treatment. If I have my numbers right, the study found that women on a very low-fat diet during or after their BC treatment were able to reduce their risk of recurrence by an average of 24%. For women whose tumors were not sensitive to estrogen--like me--risk was reduced by an average of 42%. All of this implies that my own risk of recurrence, 20%, could be lowered to something like 12-16% by following a similar low-fat diet.

I saw the nutritionist, Rachel, last week, and she gave me an even stricter diet. She has ordered me to lose 30 pounds right off the bat, since being overweight is also a risk factor in recurrence. (Presumably my weight was part of the algorithm for predicting the 20% risk, so losing weight by itself--without the low-fat diet--should push my risk below the 12-16%.) In addition, eating 20-30 grams of fiber per day also lowers risk beyond the low-fat diet. So I have no idea what my new number might be, but following Rachel's orders should really cut that 20% down substantially.

And that is something I have to keep reminding myself, because the diet is draconian. It basically involves protein (fish/tofu) and lots of vegetables, with a fiber cereal thrown in for breakfast--all in pretty tiny amounts. I don't know the caloric total, but it's got to be damn low. All foods are supposed to be as close to nature as possible, virtually no processing. Nonfat substitutes are verboten because they rely on chemicals. Green tea is a prominent feature. Though many of these characteristics are quite positive, a) it's a ton of work to eat without relying on processed foods, and b) I haven't been so hungry for so long in years.

It's odd to diet because my life depends on it. I'm used to diets being about appearance. I'm constantly tempted to throw the diet out the window and just eat, dammit, like usual. It's probably no surprise that I love food and that appearance has rarely been enough of a motivator to keep me from eating what I want. (The only exception in my life was my wedding--I did diet, and successfully, for that. And then on my honeymoon I started eating everything again.) But this time, my only motivation is to be sure that, at all the 3-month and then 6-month checks awaiting me in the next 5 years, I keep hearing "all clear," every single time. It's to be sure that I don't get another tumor in the same breast, which means mastectomy next time. It's to be sure that I don't get a tumor in the other breast, which means I do this all over again, or a metastasis somewhere else, which means I will probably die of breast cancer and be on chemo until the bitter end.

None of this makes it easier to endure the yawning pit in my stomach, or to watch Noah eat sandwiches or soy dream with chocolate syrup. But it is motivating. It's enough to keep me from rationalizing "just one" indulgence, all the fifty times a day that I'm tempted to take one. And more good news--the indigestion that plagued me during chemo has all but disappeared since I started eating this way.

Still, in some ways, this diet thing has felt harder for both me and Noah than the rest of the treatments. Those had a time boundary. This--well, losing 30 pounds will take a long time (though I'm somewhere between 4 and 6 down already, which is pretty fast). And once the weight loss is over, I still have to eat ultra lowfat indefinitely. It's just one of the ways in which cancer has changed my life permanently. Of course, I could make different choices, but I choose more life (thanks, Tony Kushner). And so add this to the list of things to remind me that there was my life before cancer, and my life after diagnosis, and they are not the same, and I don't ever, ever get to go back.

Anyway, treatment goes on. We've passed the worst suffering, I think, and I'm on the watch for hair to come sprouting from my head again, and that will be a happy occurrence. But I'm not done yet--this damn disease takes lives over for a long, long time, and I'm still in its clutches.


Anonymous said...

my darling daughter, it seems that you're not only wriitng new chapters for yourself, but for all of us who know you and love you also. Our lives have changed also. yes, there're more anxiety and worry but there's also a newly re-discovered sense of awe and empowerment as we watch you wrestle your own Lacoon and not surrender to the frustrations, fears and resentments that seem to afflict so many others who are struggling with dire threats. Watching you empowers us to keep a clearer perspective on the trials and tribulations that confront us and to draw strength and inspiration from your battle (see, I remember the early metaphors) such that we cope with our own minor skirmishes with life with humor, patience, commitment and optimism. Wishs there was some other way to do that without you having to endue all that you have, and will, but acceptance without resignation, i think, has been an important lesson for me. i look forward to my next visit when i can help fix your food-for-life and will even find joy in shairng the same kind of meal with you. I glad give up the enchiladas, tuna salad sandwiches, bar-b-que, and all the other gustatory delights to have you--my greater delight--in my life longer and happier. much love. dad

Heidi and Sarah Face The Day said...

Rooting for you as usual and noticed you mentioned "Tom" twice! he'll be so flattered -- my husband I mean --who by the way is at a KWIA meeting tonight.
You write about this whole experience so well. Thanks for letting us in as well as educating us. The dieting will be hard but will probably make you feel pretty great in the end and become a way of life. I wish you the best with all of this and with the next weeks of radiation! You are a star! Tom wishes you the best too of course! Heidi too -- and guess what -- the doctor said she's fine now and can leave the house and get out of bed until the baby arrives!!!