Birthday Season

Before I begin the main subject of this post (my birthday), I don't want to forget something that I meant to mention last week. The cover for Facing Fear--here it is again, since you might have forgotten the image--includes artwork by Madison artist Carol Chase Bjerke. The image is called "Vital Signs - Boat with Power" and it's from her Life Boat series, which she created while she was being treated for cancer. I was really excited when my book's designer, Ken Crocker, suggested using this on the cover. I think it's perfect for my subject, as well as beautiful. You can see more of Carol's work, including the rest of this series, at www.carolchasebjerke.com.

Tomorrow I will be 64--"the Beatles age," someone said to me recently. Whatever age it is, it's a birthday I wasn't sure I'd ever have, so it's pretty nifty. And the celebrations have already begun. Last Thursday, my writing group (which is very good about celebrating everyone's birthday, which ensures an ample supply of cake throughout the year) met at my house. There was a cake (of course!) which even had "Happy Birthday" written on top, and wonderful presents. An excellent season opener. Since then, I've gotten a happy birthday message from a Facebook friend, and an e-card from a relative. And there are plans for a birthday dinner with friends on Wednesday before our first Madison Repertory play of the year.

As for tomorrow, the actual day--well, once again, I have to share it with Rosh Hashonah, the Jewish New Year. This happens fairly often, though erratically, given the lunar Jewish calendar, And it is, I suppose, appropriate (beginnning a new year and all that), but it does mean going to services on my birthday, about which I have mixed feelings. Nate pointed out that I don't have to go to services, but I want to go--it's just not my idea of how to best celebrate a birthday. However, after services I will go to my friend Jackie's for her annual Rosh Hashonah dinner, always delicious. And since it's my birthday, she suggested that I bring cheesecake for dessert. It's in the oven now, smelling up the house with delicious sweet odors.

The other major event tomorrow is Nate and Meghan's departure for their year in Colombia. I won't see them off since they're leaving from Newark, but Nate already has plans to come back for Thanksgiving at my sister Susie's, and I will see him then. And then later, maybe, in Cartagena--at least that's my hope for when it gets really cold in Madison.

On Thursday, I see the oncologist, and since I am pretty much done with the pneumonia, I think I will probably get the go ahead to start the clinical trial I mentioned in the last post. More about that next week. Meanwhile, happy new year, to those of you celebrating it, and happy 64th birthday to me!

Down and Up

It's come to my attention that some of you think I'm amazingly upbeat all the time--you can't imagine how I manage. The truth is, I don't. And last week was a fine example. Thanks (or no thanks) to the pneumonia, I was not only tired and short of breath, but I also felt extremely sorry for myself. After the weekend, which had been about as gloomy, weather-wise, as Madison gets (no sun at all for two days), Monday and the rest of the week were gorgeous. But I could barely walk as far as the coffee shop on the corner--and my summer-long goal of riding my bike the twenty miles of the Capital City trail one of these September weekends was totally out of the question.

The two antibiotics I am taking were working, I could tell, but much more slowly than the levaquin I had last time, to which I am now allergic. Several wonderful friends called or e-mailed at the beginning-middle of the week to see if I could come out and play, and I couldn't. Poor, poor me. Not even the knowledge that Facing Fear had finally gone to the printer was enough to cheer me up.

Then a nurse called to talk to me about taking part in a clinical trial of sunitinib, a drug (a pill, actually) that acts to inhibit angiogenesis--the proliferation of new blood vessels that are essential for tumor cells' growth. I had heard and read about sunitinib, which is already approved by the FDA for kidney cancer (for which there is no other treatment) and one other solid tumor, a stomach tumor of a kind I don't have. The trial I expect to be joining looks at whether sunitinib is effective against other kinds of solid tumors. It actually compares two dose protocols--one group takes the pill for two weeks, has one week off, and then repeats that cycle; the other group takes it for four weeks and has two weeks off. But both groups do take the sunitinib--there's no placebo control involved.

Of course, I can't start this until the pneumonia is resolved. Suddenly I realized I'd be quite happy to go to the hospital to get a stronger IV antibiotic, if that was necessary to get into the sunitinib trial. But I doubt it will be necessary; I'm feeling remarkably much better, and I still have another few days on the oral antibiotics.

Even this news (which came on Wednesday, I think) wasn't quite enough to pump my spirits back up to their usual level, though. That required feeling better physically, which happened gradually, and finally really took hold over the weekend sometime. My breathing seems almost back to normal (what passes for normal for me), and I have much more energy, though I can't say I'm actually doing very much with it other than hanging out with friends, drinking green tea or coffee. Which is, of course, great fun.

On Saturday I did get myself deputized to register voters, but the local Obama campaign is really focused on canvassing and phone banks, not registration drives, and since those activities are pretty difficult for me with my lack of much voice, I'm not sure what I'll be doing. Something, I hope. Though I confess to having gone to the gym this morning instead of to the rally with Michele Obama.

Come to think of it, there are a lot of things I'm not sure about! For instance, I still don't know whether Facing Fear will be available in time for my appearance at the Wisconsin Book Festival on October 19, but if you're interested in knowing what that's all about, check out the Book Festival web site :

http://www.wisconsinbookfestival.org/schedule/events.php?eventdate=2008-10-19

Living in the Moment

I already knew it was a good idea to live in the moment, but today was an excellent lesson in the necessity of doing it. But before I explain why--let me offer the best moment of the past week: seeing the cover design for Facing Fear. (I was going to include the image in this post, but what I have is an Adobe Acrobat pdf, which apparently doesn't work on blogspot. Ah well--this is part of living in the moment! Instead, here's a photo of me, taken at Olbrich Park in Madison this past summer by my friend Bonnie Weisel after we biked to see the butterflies. No, there are no butterflies in this photo.)

So now-- about today. My plan for the day was to go to the gym for my strength-training class in the morning, then come home and work at my desk until I went down to the county clerk's office to be deputized as a voter registrar. But then late yesterday afternoon I spiked a fever that seemed all too reminiscent of the pneumonia I had in late July. So I scrapped the gym plan, called the clinic, and ended up going there at 3:30. Where I learned that I do indeed have pneumonia again. I managed to avoid hospitalization because there are still two oral antibiotics to which I am not allergic, but between the clinic visit and the trip to the pharmacy, I also managed to miss the 5 PM deputization.

Well, no matter. The reason I was going to get deputized today at the county clerk's office was that I had planned to go to a dragon boat festival and race in Oshkosh on Saturday, which was when someone comes to the Obama headquarters to deputize registrars. But with the pneumonia--which does make breathing a bit problematic--I'm not going to be racing on Saturday. So I just stopped at the Obama hq en route to the pharmacy and signed up to be deputized on Saturday.

Other plans for the week are similarly affected. I have to see the doctor for a follow-up appointment on Wednesday at 1 PM, so I can't introduce the domestic violence survivors who will be reading their work at a fundraising luncheon that noon. I probably won't go to dragon boat practice Wednesday evening. On the other hand, I might finish the two excellent books I'm reading, Beijing Coma by Ma Jian (a novel) and Anti-Cancer, recommended by Fred B in his comment on last week's blog post. And maybe I'll also watch some more episodes of the first season of The West Wing. As I learned this summer, pneumonia's an excellent excuse for lying around, doing only what one wants to!

In fact, my next task of the evening is to place an order with the Willy St. Coop so that they will deliver some groceries tomorrow. A real luxury!

By the way--when the picture above was taken, I was only a few weeks past my last bout of pneumonia. I know my immune system is strong: Dr. Holen complimented me on my white cell count two weeks ago. And best of all, one of the two antibiotics is my favorite color, rose, and matches both the turtleneck and the fleece I am wearing today. So I figure it's just a matter of time before I'm in the pink of health, as they say.

Therapies That Work

Last Thursday I had my first CT scan and first oncology appointment since the beginning of the summer, when I started my vacation from chemotherapy. Much to Dr. Holen's surprise and mine, the scan showed remarkably slow growth of tumors in the months since I stopped chemo. (Haven't had oxalyplatin since May, or anything at all since mid-June.) So rather than start the oxalyplatin again, which clearly worked but causes neuropathy, not to mention cold sensitivity, Dr. Holen suggested two possibilities--one, waiting until things change for the worse and then (presumably) going back on oxalyplatin, and two, investigating what clinical trials I may be able to enter. He described three or four new drugs that look very hopeful; of course, whether the trials are open, and whether I'd be eligible for them, are big questions. He seemed to think eligibility was not an impossibility--I'm skeptical, having already been washed out of a couple of trials because of too much prior radiation and/or chemo. Anyway, he's going to check on what's available and get back to me sometime soon. And in fact today I returned from the gym to find phone messages about getting a blood test that made me think maybe the process of figuring out my eligibility for a trial is alread in motion.

Dr. Holen seemed genuinely excited by the results of the scan and the possibility of finding some sort of scientific breakthrough for stomach cancer, and he admitted, "It's odd to say to someone "'your cancer is worse'" (because the tumors are bigger), and yet have the overall picture be good news.

Of course, maybe he was unduly influenced by the little (but very high-end) cupcake I gave him to celebrate two years of survival with metastasis, but I don't think so.

Anyway, all this meant no chemo on Thursday--a big surprise--so they just de-accessed my port and I went to an expensive shop and bought a leather wallet to celebrate, and to replace the wallet lifted Sleazebag Nimblefingers when I was in Chicago.

One of the things Dr. Holen said to me was, "Whatever it is you're doing--exercise, whatever--keep it up!" Which helped me decide to describe, in this blog post, some of the things that I am doing, as well as some of the things that I'm not.

I've often said, in recent months, that I think that the reason I'm still alive has a lot to do with the supplements I take, recommended by Dr. Lu Marchand, the integrative medicine doctor who comes into the oncology clinic to work with cancer patients. Obviously, the chemotherapy I was on all last fall, winter, and spring, has been vitally important. But when I first saw Dr. Marchand last fall, I was losing 5 pounds a month (I went from about 130 to just barely over 100 pounds between June and December 2007) due to diarrhea that I couldn't control. I was extremely weak: I had almost no muscle mass and needed to use those door-opening buttons designed for handicapped access to get into public buildings with heavy entrance doors. Obviously, this situation couldn't go on much longer, and also obviously, chemotherapy wasn't likely to help--in fact, the chemo was partly responsible for the diarrhea.

Dr. Marchand made a lot of recommendations, all based on (the admittedly limited amount of) scientific evidence on "alternative"--or rather, complementary--therapies. She suggested that I make myself smoothies using whey powder (for protein), yogurt, and flax seed oil, with a banana to improve the taste. I don't much like bananas, and I don't find this at all delectable, but I do force myself to eat a certain amount of this glop every day, and the extra protein, plus the strength training I've been doing, has definitely built some muscles.

I also take a lot of supplement pills: milk thistle, melatonin, vitamin D-3, Host Defense (a combination of powdered medicinal mushrooms) and a squirt of another combination of mushroom extracts, as well as a multi-vitamin and calcium (both of which I've taken for years). Most of these, I think, are intended to boost my immune system and help the chemo work against the cancer. To control the diarrhea, I take immodium and, with every meal and snack, pancrecarb, a formulation of pancreatic enzymes that help digestion. I'm still playing with dosages of these, and also with the timing of meals. It's hard enough, because of my surgically-reduced stomach, to get enough calories to sustain life; I hate it when--as often happens when I eat in the evening--the food departs my system before there's time for the nutrients to be absorbed!

Before she recommends any supplement, Dr. Marchand checks it against the chemo I'm taking to be sure there won't be adverse reactions. Very important--and a good reason why no one should just look at the list of supplements above and decide, "Oh, those would be good for me."

All this--thinking about food and digestive problems and having to eat glop and count out pills and make sure I've taken them (and I haven't even listed the various prescription drugs I take daily)--is very tedious. I hate it. But obviously, it has worked. I haven't been able to gain any weight, but I haven't lost any more, and I've definitely built muscle. (Just ask my massage therapist!) And something--my hyped-up immune system working with the chemo, maybe?--has slowed the spread of the cancer.

So there's definitely something to complementary therapies (including acupunture, regular exercise, maybe even massage and Feldenkrais). But--there's also a lot of potential for quackery. Every so often, a very well-meaning acquaintance or even a stranger will tell me about something I definitely should take to fight my cancer. I've had people who read my blog implore me to investigate supplements sold on web sites set up by friends of theirs. A stranger once sat down next to me in an airport waiting room and described an alternative medical clinic in Florida that I should investigate. And recently, a new friend--a tourist visiting Chicago from another country--spent a lot of time trying to convince me to take "Vitamin B-17," found in apricot pit kernels; she based her advocacy of this therapy on the testimony of one man who claimed to have cured himself of leukemia by eating apricot kernels, avoiding caffeine and alcohol, and I don't remember what else. My friend was thrilled to disover that in the U.S., apricot kernels are freely available for purchase in health food stores. In her country, she said, they're banned. Not too surprising. Here are a couple of quotes from the Wikipedia article on amygdalin, aka Vitamin B-17 or laetrile:

"Though it is sometimes sold as "Vitamin B17", it meets none of the criteria of a vitamin. Amygdalin/laetrile was claimed to be a vitamin by Ernst Krebs, Jr in the hope that if classified as a nutritional supplement it would escape the federal legislation regarding the marketing of drugs."

"A 2006 Cochrane review of the evidence concluded that there is no sound evidence that laetrile is an effective cancer treatment^[8] and that there is considerable doubt about its safety.^[8] It has not been approved for this use by the United States' Food and Drug Administration.^[5] The U.S. government's National Institutes of Health evaluated the evidence, including case reports and a clinical trial, and concluded that they showed little effect.^[9] A 1982 trial of 178 patients found that tumor size had increased in all patients. Minimal side effects were seen except in two patients who consumed bitter almonds and suffered from cyanide poisoning."

Cancer is no fun, chemotherapy is often even less fun, and I understand why many cancer patients and their family and friends look for alternatives. I consider myself extremely fortunate to have found a board-certified doctor who is a knowledgeable advocate for tested therapies that supplement and complement chemotherapy--indeed, to have easily available access to her in my oncology clinic. Many oncologists are still very wary of "alternative" therapies, which they seem unable to distinguish from evidence-based complementary therapies, and I have friends and family members with cancer whose university-associated clinics offer nothing by way of integrative medicine.

This is more than a pity. It's as much of a scandal as apricot kernels and other quack remedies.

Cancer Lessons

The past few days have confirmed, or re-taught, some of the lessons I've been learning for the past 3 1/2 years: have fun, know your limits, accept help, don't sweat the small stuff (and a lot of the "stuff" is smaller than you think).

Starting with the last of those lessons: On Wednesday last week, I drove down to Chicago to meet up with my college friend Claire, who was stopping over en route to an amazing family reunion on the east coast. After a good dinner at an Armenian restaurant, we walked to Navy Pier for a terrific fireworks show. When we got into the cab to head back to the hotel, I realized that my purse was strangely light. (I'd just started carrying a purse instead of the travel wallet I've held in my hands for years, if not decades.) I unzipped the purse--and discovered that the travel wallet was gone, along with a couple of hundred dollars (including the wonderful billfold designed and folded by my son Jed from twenty one-dollar bills), four credit cards, my drivers license, university ID, library cards, AARP and AAA cards... You get the idea.

We asked the cab driver to take us back to the restaurant (the last place I'd had the wallet out), but when Claire went in to inquire, she got nothing but blank stares from four waiters. She was, I think, more upset than I was. In fact, I was strangely un-upset. Believe me, worse things have happened. And I was kind of amazed (and embarrassed) that Sleazebag Nimblefingers had managed to unzip the purse, lift the wallet, and re-zip the purse without my noticing.

Fortunately, Jed and Nazgol were still in Madison, and Jed was able to find, in the mess in my study, most of the info I needed to report the theft to the credit card companies. I called Chase first, and was astounded and touched that one of the first questions the customer service person asked me was, "Are you safe?" Bank of America asked me (as part of their security check) what my work phone number was--and even though I retired nine years ago, the phone number came right to mind! And the cs person at the third company was able to cancel both that company's card and the one I hadn't yet called. All this took place less than two hours after the pickpocketing, but Sleazebag Nimblefingers had already charged drinks (I assume) at several bars and something (beer?) at gas stations and a Jewel market. I'm sure a good time was had by all that evening! And yes, I was out a chunk of change, but he or she no doubt needed it more than I do. Claire owed me her share of hotel room; she gave me cash, which was more than enough to buy gas and lunch enroute back to Madison.

Don't sweat the small stuff.

As for the help and limits-- Saturday I was joined by four wonderful biking friends (Diane, Angie and Jim, and Gail) on the TeamSurvivor Chocolate Chase fund-raising ride. Angie and Gail decided to do the 20 mile option. Jim and Diane asked what my goal was and when I said 10 miles, they started off with me. Jim lost us after a pit stop in a cornfield, and after only 3 1/2 miles, I told Diane that I had changed my mind and wanted to stop after the 4 mile route. The ride was a bit hilly, and I could tell that I just didn't have the stamina to ride another 6 miles and be able to do anything more than nap for the rest of the day. And I did have other plans for the afternoon and evening! So I sucked up my pride and called it quits. I think the limits on energy/endurance are related to lingering effects of the pneumonia, and I have no interest in courting a recurrence of that. So I'm actually proud that I knew and respected my limits. And that I had no qualms at all about accepting Angie and Jim's help in wrestling the bike back into the Subaru.

And--best of all, and a little reward (I think) for my good sense: at the raffle after the ride, I won a $20 gift certificate to David Bacco Chocolates, an expensive and exquisite place I have heretofore only patronized for gifts for others!

As for having fun: what could be more fun than the past week, which (in addition to the above) included two days with Jed and Nazgol including a visit to the House on the Rock tourist-attraction-supreme; an overnight stay in Wilmette, Illinois, with my high school friend Barbara; two concerts at the Token Creek chamber music festival; a walk at dusk with my friend Sandy in search of great horned owls...

This week it's back to what passes for normal life around here, with a CT scan and visit to the oncologist on Thursday, and who knows--probably, I'd guess--resumption of chemo. But there are still a few days before all that. And I'll post a health status report next Monday.