Wednesday, August 30, 2006

Newly-busy days

So much going on! I just wanted to file a quick update here--not as verbose as usual, I hope.

First, I started teaching last week. It's nice to be back in the classroom, actually--reassures me that I can return to My Life, and not be stuck in the life that hijacked me almost 6 months ago. My first day was rough--I have two back-to-back 3-hour sessions on Tuesdays. In the first, I forgot to conserve energy, and went bouncing around the room the way I usually do. About 2 hours in, I was hit with chemo-style fatigue and wondered how I'd make it through the rest. In the second class, I sat on a chair almost the entire time. I told both classes about my health--the first, so we could arrange a plan for any time radiation might make me late for class, and the second, to explain why I sat on my ass the whole time. Interestingly, this week a student came to me to talk about breast cancer (usually it's to ask for job negotiation advice). His mom was just diagnosed and he wanted some reassurance, I think, and some tips for her.

Second, in the few days before radiation started, we squeezed in a quick trip to Yosemite. That, too, was a good return to life. I actually did all of the following in three days: a 2-hour horseback ride, a 2-mile hike (mostly downhill), and a 12-mile bike ride. In the past, this would not have been an especially active getaway for us, but I feel an enormous sense of accomplishment now. Now I just have to keep up the exercise! We got my bike tuned up before the trip, so it's ready to go.

Third, I started radiation on Monday. It is going fine. There are no side effects right away--those don't usually appear until the 2nd or 3rd week, apparently. It really is painless--a bit like sitting on the slide of a giant microscope that buzzes for about 45 seconds. If you're not smashed on the slide, you can imagine, that wouldn't feel like anything. Anyway, I am showering with Ivory soap and deodorizing with Tom's of Maine for the next 6 weeks, and I have an appetizingly-named cream to apply--it's called RadiaGel. Mmmmm.

Finally, since my diet has garnered lots of sympathy and support (thanks so much for that!!!), I'll let you know that I've made it through my first 3 weeks pretty well. At Yosemite, I sometimes had few good options, and I had three meals on our trip that I consider really cheating (fried [!] fish at one, scrambled eggs and waffles at another, a Quizno's sandwich at the third). Otherwise, it was not TOO hard to ask for my fish cooked without any oil or butter, and my vegetables steamed, and extra veggies instead of the rice. So it's worked out, and I've lost at least 5 pounds (maybe more, but that's using different scales, so who knows). I check in tomorrow and we'll see how it continues.

OK, that's it for now. Thanks for checking in. I don't feel "done" with all of this yet and I do appreciate the ongoing support, so much.

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.

Tuesday, August 08, 2006

Oh, happy day!

I am done with chemo!!!!

We went in today for my last treatment. Let me say that again: LAST treatment.

Of course, it couldn't be a smooth day. Just as we were headed out the door, I noticed a bunch of shredded stuff in the backyard. This is not unusual--Kibble likes nothing more than to find tissues or something similar, and to tear them to shreds. So I went to take a look. And it wasn't a tissue. It was an ant trap.

The ant trap being a product that poisons a kind of animal.

We called the vet, and the manager told us we'd better bring him right in, along with the box. So we stared at each other, as the clock ticked quickly past when we
had to leave in order to be on time. Without much idea of how to handle things, we dispatched Noah to the vet with Kibble, and I picked up the phone to call the oncology nurse and explore ways to let me drive myself home after chemo. (Usually, the benadryl dopes me up so much that it's impossible.)

Fortunately, while I was dialing, a call came in on the home phone from the vet's office. The manager had jumped the gun. Ant baits are not generally dangerous in small quantities, except that dogs can ingest bits of plastic that might obstruct the intestines. We could call the company to confirm this, keep him home, and observe him. Because my very generous friend Maia was lined up to come sit with Kibble for a few hours that day anyway, we were saved. Kibble could stay home, Maia could keep him under observation, and Noah and I could both go to chemo.

That's what happened. We left a half-hour late, which stretched a bit longer with some needed stops at the post office and bank. Once we got to USC, it was actually good. For once, we were just ushered through every step of the day without more than a 10-minute wait in between.

The blood draw was smooth, even if the receptionist teased me about
still being too scared to look at the needle. It's true--the blood-draw sticks don't hurt that much now, but I do not want to see that needle puncture my skin. Just too yuck.

I had my last appointment (for 3 months) with Christy, my oncologist, and Michelle, the fabulous oncology nurse at the breast center. We talked through my symptoms for the past two weeks (bone pain, some abdominal pain, reflux, weak skin, numb soles of feet, almost all my eyelashes gone and eyebrows rapidly following--all quite normal, she said). They provided me a referral to a radiation oncologist down here in the South Bay, so I can do my 5 days a week closer to home. There was much commiserating about Kibble's ordeal, and showing of dog pictures--with Michelle, that is; not Christy, who heard our story and immediately wondered why the heck people bother to have pets.

Thanks to our terrifically fun trip to SF this past week with Sarah and Tom, my sister- and brother-in-law, I had really exhausted myself before this chemo and seem to be getting a slight chest cold. I was worried that this might keep me from getting my last treatment today, but both Christy and Michelle reassured me--if that's the right word--that Christy is "very aggressive" and doesn't delay chemo unless the person has a raging fever or is undergoing surgery. So just a few minutes after that appointment, Lilia came to escort us to the day hospital where I get my chemo.

I was one of only three patients, so I got to pick one of the best chairs. What makes a good chemo chair? Lots of space around it; being in a corner of the room with two contiguous solid walls (not dividers, which can get bumped); a set-up that makes it easy to reach my left arm (only myleft arm can get chemo, because they removed lymph nodes on the right) and allows Noah to sit on the right side or nearby in another chemo chair (chemo chairs are comfortable recliners, whereas the guest chairs are regular, uncomfortable chairs for sitting only); and good air circulation. I think today I got the 2nd best chair in the day hospital. Nice way to go out.

We had a little hiccup with the catheter insertion. Because my hand really hurt the last time she tried to use it, Lilia had switched to my forearm. But she couldn't get the catheter into the vein, even after some poking around for it. She felt really bad--she's so nice about it, and despite this issue, she's very good at inserting IVs. We switched back to my hand, and she got it right away, so no problem.

The Taxol drip got started at around 4pm; though Lilia was off at about that time, she stayed until close to 5, chatting with me about her wedding and making sure all was OK. When it was time for her to leave, we gave her a card with a couple of gift cards for her honeymoon in January. Nothing big! We tried to stay small so as to comply with any rules about gifts for hospital personnel, but wanted to do something toward her plans, after she has done so much for me.

The drip went on without incident until about 7pm, and then the late nurse came to remove the catheter from my hand. It bled more than usual, but I didn't care. I was DONE. Noah gave me a high five as the catheter came out, and then a big hug when I stood up. My face wedged itself into a huge, immovable smile. I felt a sense of joy and hopefulness that I've felt on few occasions, such as when I got my postdoc after taking a huge gamble and turning down another, sure-thing job, or when Noah, Kody, and I finally reached the bottom of a terrifying mountain scree-pile descent in Colorado which I was not at all sure we would survive.

And what's great is, I don't even have to go back tomorrow for the Neulasta shot that boosts my white cell counts. Because we are not trying to rush my blood counts back to normal in a short, two-week window, they can take the usual 3 weeks to recover fully; plus, my blood counts have been really good all along. So I am really done with chemo. No more procedures remain. Close that chapter.

My hair will start to grow back in about 3 weeks, I will start feeling better and keep getting better after a week or two, and all my crazy symptoms like numb, blistered feet will go away. Christy says I won't be fully normal for as much as a year, but I'll see steady improvement throughout that time. I will be meeting with a nutritional oncologist on Thursday, and now that I don't have chemo to ruin my associations with any new eating habits, I plan to start eating in a way that promotes my survival, and increasing my exercise. I can cut my 20% risk of recurrence to about 16% if I take diet and exercise seriously--and I feel I must.

So I have radiation, which should be a piece of cake next to this. One woman in my support group had really terrible horrific burns, but I feel confident I'll escape that, mostly because she was on chemo at the same time (very rare). With my foot blisters, I see how body skin becomes weaker, and healing is much slower during chemo. Also, she had a full mastectomy, not a lumpectomy like me, and they had to aim the beam directly at her body. She got 'sunburned' on her
back from where the radiation went through. I am hoping that the angle of radiation for me can be directed away from my torso. Well, we shall soon see. In any case, I've been told that there is fatigue associated with radiation, but it is minor compared to that from chemo--in fact, it's a function of having to go 5 days a week for 6 weeks as much as of the effects of the beam itself. And some women do not get any sunburn at all. More on radiation as it approaches. I should have my first appointment very soon, and then start treatments in about 3 weeks. If we have the schedule right, I would start on August 28 and finish on October 6. Sounds quite bearable.

After all, chemo is DONE! Did I mention that?? :-)