The only things the doctors and nurses seemed interested in was my blood counts, which were not good. By the second-to-last treatment, my anemia was so severe that I could have had a transfusion, but instead I was given the wonder drug Aranesp (erythropoietin). As it happens, I just read a series of articles about erythropoietin in the New York Times because new studies have shown its side effects are more severe than company reps told doctors before it went on the market. The FDA is considering scaling back its approval for use in cancer patients, but lucky for me, they haven't done it yet. (The risks – blood clots, heart attacks and new tumors - don't affect me, but only people who take the drug long-term. All the controversy is resulting in a huge sales loss for manufacturer Amgen, which announced this week that it's cutting 14% of its workforce) But, in the intervening weeks between the treatments and the Aranesp shot, the resulting anemia got so bad that I felt like I was walking through pudding. I could wake up feeling sort of okay, go out, do two errands or go to a meeting, and suddenly be more exhausted than I ever believed possible. And the tiredness would bring with it more waves of nausea. I couldn't fight the anemia naturally, i.e., with high-iron foods like spinach and broccoli, because I had stomach aches all the time and could barely eat noodles. I couldn't take herbal iron supplements because they made me nauseous.
The other terrible thing has been the hot flashes and night sweats. Again, I can't really do anything about them, because everything there is to take for them, whether synthetic or natural, is estrogen or estrogen producing, and that would feed the tumor. Coffee, wine and spicy food –three of my favorite things in life – make hot flashes worse, but I actually have not been consuming any of those during the chemo, except coffee very occasionally because it counters some of the other side effects. So I am stuck with waking up all night, throwing the covers off, putting them back on, putting ice packs behind my head, and generally screaming at the world.
The weekend before my last treatment was scheduled, I sat down with my two best friends, who are both medical people, and we discussed the risk of ending early. Deeg had done a lot of research online, Medline searches, etc., and come up with probably 50 pages of studies, none of which were exactly on point, but which amply demonstrated that they have basically no idea how much treatment is enough. We did learn that there is still some controversy about the value of taxanes (the category of drugs that includes Taxol) in chemotherapy regimens. Many studies show that it improves the rate of non-recurrence of cancer (one by as much as 17%), but some showed that two standard Canadian regimens ((known as EC and CEF) which do not involve taxanes are more effective over 3 years and avoid the toxicity of the taxanes, especially the neuropathy.
In the end, what decided me to go ahead was that Deeg explained that the benefit of each treatment was not what I had been assuming. I figured it was like filling up a basketball: more is better until you get to the point where it's going to burst (i.e., the toxicity overwhelms the benefit), but each time you fill it, you increase the benefit. So I figured, Taxol adds 7% to the effectiveness of the AC (the first set of treatments I had), so by skipping one treatment, I would lose 1.5-2% of benefit. What Deeg explained is that having a half-filled ball is more like not having one at all (she called it a dose-response curve): they don't really know how much Taxol each person needs, but they do know what the maximum is that people can tolerate; if they could, they would give it all to you at once, but since they can't, they break it up into as few as possible – at this point, four every other week is the preference. So it's possible that I got all the benefit I was going to get after one dose, or possibly I wouldn't get any until the last one.
Of course, it is also possible that I got no benefit at all from any of this, either because I was going to be one of the 42% who was fine without any adjuvant therapy, or because I was one of the 26% for whom only tamoxifen (hormone therapy) was enough, or because I was one of the 19% for whom AC was as effective without the addition of Taxol, or because I am one of the 16% for whom none of it works (hopefully not). But this entire thing is a numbers game, because there's just no way to know what category you're going to be in, and so once you're in it, it makes sense to go all the way.
Maybe on some level I always knew that I would have the treatment, and pretending that I might not was just a mechanism for getting through it without having a nervous breakdown. Certainly, now that I've gotten through it, I think I would have been disappointed in myself if I had quit early, just to avoid being uncomfortable for another two weeks. In fact, the euphoria of knowing it was the last one made this one less awful than the previous one, though I definitely had some bad days.
I also had something else to focus on. Just around when I had my last injection of poison, we learned that my good friend Judith Mirkinson (Mirk), and two other members of GABRIELA Network, a U.S.-Philippines women's solidarity group (www.GabNet.org), were being prevented from leaving the Philippines. I had never heard of this particular form of harassment of international human rights activists. We are very used to people being denied entry, sometimes arrested and deported, and more rarely imprisoned and charged with crimes, but this was something different. The three women had attended the Women's International Solidarity Affair in the Philippines (WISAP), a biannual international gathering. (I arranged for a young Palestinian friend of mine to attend, who apparently had a fabulous experience and contributed a lot to the event, and I would have gone too if I had not been otherwise occupied.) Two years ago, after they led a delegation of women attorneys to investigate the human rights violations of the Philippine government led by Gloria Macagapal Arroyo, the three women had learned they and all the members of the delegation (including one who didn't end up going on the trip) had been placed on a watch list and wouldn't be allowed back into the country. Senator Barbara Boxer and others intervened and got that watch list withdrawn, and the three had no trouble getting in last month. But while they were in the country, a new law called the Human Security Act (their version of the PATRIOT Act) went into effect, and apparently brought with it a bunch of new watch lists, hold lists, and blacklists. Mirk reported that she saw the computer screen at the immigration counter, and across the top was a shocking pink bar that said "WATCH LIST HOLD LIST BLACKLIST SUSPECTED TIES TO TALIBAN" which is pretty absurd when you consider you are talking about a Jewish feminist.
The three, Analisa Enrile, Ninotchka Rosca (who is a Philippine citizen and U.S. permanent resident) and Mirk, were not imprisoned, they could go anywhere in the Philippines and do whatever they wanted, but were not allowed to leave the country. It's hard to know what the government imagined they were going to do, if they were stuck there indefinitely. Obviously, what they did was continue their activism, which they could do very effectively via phone and email, and they did. They mobilized support, with the help of Gab members who had made it home, like Mirk's two daughters, who did an amazing job of organizing a fax campaign to the U.S. embassy there and the consulates here, vigils at Philippine consulates around the country, and coverage in the progressive media. The embassy reported receiving hundreds of faxes from all over the U.S. and it worked – last Tuesday, the three were assured by the embassy that they had been removed from the watch lists. Of course, when they got to the airport, they were told the holds were still in place, but Philippine Congresswoman Liza Masa (of the GABRIELA Women's Party, one of the only all-women's political parties in the world) straightened it out and it now appears that the lists have been withdrawn for all 500+ people who were on them. So the campaign had a bigger impact than just getting our friends home.
I wasn't able to do too much, because I wasn't feeling so well, but I did do a little media work and will have a short report on the story and the San Francisco vigil on tomorrow's KPFA Women's Magazine (broadcast at 1:00 p.m. on the West Coast at 94.1 FM or available after that on our website, http://www.kpfa.org/womensmagazine/).
I was really happy that Mirk was able to join me and a dozen of my other closest friends for dinner last night to celebrate my slightly belated birthday and the end of this awful chemo process. I drank a glass of Sangria, my first alcohol in 4 months (I don't think it caused too many hot flashes) and ate a lot of great tapas with lots of health-promoting garlic (with only minor nausea resulting, well worth it!). I am not 100% over the side effects of the Taxol; my energy is still pretty low, and the neuropathy is still pretty bad (it may be for some months), and of course I still have NO HAIR. But I expect within a few weeks to be feeling close to normal. I have about a three-week break, I think, before I start radiation, and I plan to spend it making real headway on the rewrite of my novel, which is about half done now.
Thanks so much to everyone for your support during this difficult and educational experience. Whether you are one of those who came with me to chemo, came over when I was too sick to even laugh at your jokes, took walks, called to check in, made food, sent emails letting me know you were reading my blogs, or just sent good thoughts and energy, YOU MADE ALL THE DIFFERENCE! AND WE DID IT!