Saturday, January 26, 2008


Now, this is an odd topic for a post I'm writing just an hour-and-a-half before I leave for the Virgin Islands! But it's something I've been meaning to write about since last fall-- and it's also an excuse to invite those of you in Madison to my next reading, on Tuesday evening, February 19, 7:00 PM at Avol's Bookstore, 315 W. Gorham St. I'll be reading from my unpublished (maybe never-to-be-published) memoir about fear. It's likely the only opportunity you'll have to experience any part of this magnum opus, so do come!

Last fall, someone asked me if I was afraid. "Of what?" I asked, surprised by the question, even though it came in the middle of a fairly serious conversation. I explained that I don't see any reason to be afraid of death (although I know a lot of people, especially young people are-- and I was probably afraid of it when I was younger, too). As far as I can tell, when you're dead, you're dead. It's the people who are left behind who suffer, not the dead person. The people I feel sorry for are the ones who believe in a literal heaven and hell; they must worry about where they're going to end up. Though someone explained to me that those people also believe in salvation, so they don't actually have to worry, even if they're terrible sinners. Anyway, that's clearly not my theology.

The process of dying is more problematic. Of course, I'd like to avoid pain and suffering, and especially would like not to subject friends and family to endless days and weeks of watching me suffer. But I've done what I can (having a healthcare power of attorney who knows my wishes, and a signed DNR order) to ensure that I'm not subjected to procedures that might lead to unnecessary pain and suffering. And I have a certain amount of faith in my doctors, hospice, my relatively high tolerance for pain, and the power of morphine to make the process of dying as easy as possible. And as I mentioned in December, in my post about my friend Jane Henkel, I was relieved to realize, from her experience, that a cancer death can be relatively quick and doesn't necessarily involve a weeks-long death watch.

I've thought about all this several times recently, when I heard Susan Sontag's son, David Rieff, interviewed by Terry Gross, and when I read the review in the current New York Review of Books of Rieff's memoir of his mother's death. Sontag, according to Rieff, clung so fiercely to life that she insisted on an extremely painful bone marrow transplant, even though doctors said it was extremely unlikely to work, to treat her third cancer, a rare blood disease. I had previously had enormous respect for Sontag; her book, Lllness as Metaphor, came out just after I had Hodgkin's disease, and I thought it was very wise. But when I heard about Sontag's insistence (from the time she was 16, apparently) that she would not allow death to shorten her life, I was appalled at her arrogance. Not as a sixteen-year-old; most teenagers believe they're immortal, after all. But it seems to me that a highly-intelligent woman of 70 who had already survived two cancers (breast and uterine) should understand that no one lives forever; that she has been granted more than twenty years (since her first, very serious, cancer) because of her privileged economic and social status; and that gratitude and acceptance, rather than arrogance, are more appropriate responses. Though I suppose that doesn't have much to do with intelligence.

Sontag was apparently so focused on living that she refused to talk about death, or to accept that she was dying; something that continues, two years after her death, to upset her son, who felt he could only support her wishes, rather than tell her the truth about her situation. This, obviously, is so different from my attitude that it's almost incomprehensible to me. And I'm grateful both for the blog technology and for the forbearance of my readers that I am able to talk, or at least write, about the truth as I see it.

No, I'm not afraid. I'm also not dying at the moment! I'm waiting for the taxi to start me on my vacation with the sun and the pretty fishes. Back in a week or so.....

Thursday, January 17, 2008

Snorkeling and Chemotherapy

First, a reminder: If you want to be notified whenever I've added a post to this blog, scroll all the way down to the bottom of this page and click on "subscribe." Don't worry--you won't fry your computer, whatever you click on! Experiment a little, if you're confused by the lingo.

Snorkeling: I was thrilled, this week, to discover that I have enough breath to snorkel! At the end of this month, I'm going to visit my friend Jackie, a speech therapist who's working on St. Thomas and St. John in the Virgin Islands this semester. I really wanted to be able to snorkel, but last fall when I tried to swim (at the gym), it was a near-disaster. I slid into the lap pool and the cold water knocked out what little breath I had left (this was before, or maybe just after I started chemo again in October). I managed to swim about a half a length, gasping, very close to the wall of the pool, before I realized that there was no one at all, except me, in the pool room, and this could be the stupidest thing I'd ever done in my life. So I got out of the lap pool, and tried swimming in the warm water pool. That was better, but not great. And although I didn't try snorkeling then, I'm sure it would have been extremely difficult, if not impossible.

So it was with some trepidation that I took my snorkel and mask to the warm water pool on Tuesday. But it was no problem! So I am off to see the pretty fish on Jan 27.

Chemotherapy: Last Thursday, when I was sitting in the oncology clinic getting my chemo infusion, it occurred to me that people (at least some people) might be interested in knowing what this is really like. (If you're not one of those people, you can stop reading now.) In my experience, chemo has changed enormously in the past 25 years; all I can remember from my Hodgkin's chemo is spending two days after each treatment on my knees in front of the toilet. But that was before anti-nausea drugs were available. I recently mentioned to a long-time chemo nurse that I thought it was odd that I had no memory of actually receiving the Hodgkin's chemo. "Oh," she said. "That's because we used to knock you people out so you wouldn't get sick before y9u left the clinic." Oh.

Of course there are many different types of chemo, and different people have different reactions to each of them. But here's what happens to me, on my current regimen. I'm now getting oxalyplatin and 5FU; this is the third kind of chemo I've had for stomach cancer. (The other two regimens stopped working, which is common. The tumor cells eventually evolve to get around
whatever was stopping them from growing.)

I get an infusion of oxalyplatin every two weeks, on Thursdays. This involves sitting in a chair in the clinic for at least 2 1/2 hours--a half hour while the pre-med pills (a steroid, dexamethasone, and an anti-nausea drug) take efect, and then two hours while the oxalyplatin runs through my veins. I have a port--a direct line from my chest into a vein--installed because I long ago ran out of really good veins to access for an IV line. The Hodgkin's chemo effectively destroyed the veins in my right arm, and after a couple of rounds of chemo for stomach cancer, it was just taking too much time for the lab techs to find decent veins in my left arm.

The infusion, including accessing the port with a small, fine needle, is painless. I sit there and do the Times crossword puzzle, read the New Yorker, and watch DVDs. A year ago, for my birthday, my sons and sister Susie gave me a really terrific present: a portable DVD player and a Netflix subscription. I would never have imagined I could enjoy a present so much. I've been working my way through "Six Feet Under," one episode per infusion--I'm at the end of the fifth season now, and because my sense of irony may be fading, I'm thinking of getting "The Wire" next.

As soon as the oxalyplatin infusion is done, I get hooked up to a portable pump, which I wear for 46 hours while it infuses 5FU into my veins. (Another reason for having a port; I couldn't very well walk around Madison for two days with an IV pole.) Again, this is totally painless. I disconnect myself from the pump on Saturday morning, and go on my way.

Of course, there are side effects, but really, they're not too bad. And I'm amazed by how predictable they are. After the Thursday treatment, I'm pretty wiped out, and often just go home and sleep. Until this last treatment (last Thursday), the steroid perked me up by Friday morning and carried me through the weekend. For some reason, last week that didn't work. Maybe I was fighting some other bug, or maybe I was still recovering from my New Year's trip to Zion and LA, but I slept pretty much all of Friday. I'd get out of bed, do something strenuous like reading the newspaper, and then decide I had to crawl back into bed. By the time I disconnected from the pump on Saturday morning, though, I was pretty much back to what passes for normal energy for me these days.

The most stunning side effect of oxalyplatin, which apparently happens to virtually everyone, is extreme cold sensitivity. I have to wear gloves to take things out of the refrigerator! If I eat or drink something cold, the inside of my mouth tingles. When I go out in the Wisconsin winter, the insides of my thighs tingle, my hands tingle and even sometimes get kind of rigid, my face tingles and my jaw freezes. This effect starts pretty much right away, and lasts about four days. It's worst on Friday and Saturday, I think; by Monday, it's pretty much gone, or at least so tolerable I don't notice it very much. It's not a painful sensation, but it's not exactly pleasant. Sort of like the prickles you get when an arm or leg has gone to sleep and is waking up.

On Sunday, I often get another side effect: stiff calf muscles. But stretching takes care of that.

By Monday, I'm really beginning to feel good, and this feeling only improves for the next ten days or so, until the next chemo treatment. But a week after the treatment, again pretty much like clockwork, I notice that the insides of my mouth and nostrils--places where cells are turning over pretty fast--have become sensitive. The sores (if you can even call them that) last only two or three days, but I can't eat spicy food because it burns my mouth. Not really a big deal, except when (like last night) I forget to tell the waiter to ask the chef to leave out the red peppers in the sauce for the mussels and clams!

The long-term side effects of chemotherapy include destroying the villi that line the intestine and are instrumental in absorbing nutrients, and destroying red and white blood cells, or the ability of the bone marrow to replace them. I've had a lot of gut problems and consequent weight loss, though I think I'm finally getting that under control. I haven't had any problem with my white blood cells; I did have some anemia, but twice I got Epo shots (Epogen--the same thing some nefarious athletes use in blood doping), and I guess that worked, because last week, my red count was good enough that they didn't give me a shot.

So there you have it. I wouldn't say chemotherapy is unmitigated joy, but it isn't the horror that many people assume. And I do think that the assumption that it will be a horror feeds a fear that only makes the experience worse.

If you have questions about all this, post a comment, and I'll be happy to answer, if I can.

Tuesday, January 8, 2008

Visits and Visitors

Just got back at midnight last night from a vacation with my sons and Jed's significant other at Zion National Park and in Los Angeles. A terrific nine or ten days' respite from thinking of myself as a "sickie." No doctors; no chemo infusions. Just beautiful scenery (we also drove through Bryce Canyon); some short hikes; a truly spectacular Cirque du Soleil show in Las Vegas; and lots of good conversation and love. In LA, I saw my long-time (since college) friends Claire and Deborah, and also my sister Paula who, like Deborah, lives in San Diego County. They drove something like six hours round-trip on very rainy freeways to spend a few hours with me.

I have been trying to get away from Madison for at least a long weekend every month. I really do feel much more like a normal person when I'm not in the shadow of the hospital (almost literally, since I live within walking distance). And of course it's wonderful to see my kids, my sisters, old friends, and I'm happy that they really want to see me. But on this trip, I became very aware of the complicated balancing act required to satisfy other people's desire to spend time with me, and my desire to live my life as normally as possible for as long as possible.

Since the beginning of last summer, I have had a lot of visitors: friends and family who have come to Madison for as little as a few days or as much as a week. They want to spend time with me, and of course when they're here, I want to spend time with them. But when you combine the time I have spent traveling and the time I've had visitors, and then add in the days I'm out of commission because of chemo and its effects, there are not a lot of consecutive days left to live my normal Madison life: spending time with Madison friends, practicing cello, writing.... For me, that's very frustrating. It's not just that I like solitude (which I do). Every visitor, and every day I spend with visitors, is a reminder that my life is not "normal." Much as I love all these people, I hate the reminders.

When we were at Zion, my older son, who just finished his first semester of law school, told me that he was taking a leave from school so that he could spend more time hanging out with me. He has what seem to me legitimate academic goals that he wants to accomplish during the next several months, and his professors agree that taking the time away from classes to write a paper that could be published is a good idea. The school will welcome him back when he returns, and will hold his scholarship for him. So the idea that he would take a leave was not hard for me to accept.

But then he said he'd come to Madison to hang out with me for three weeks each month! I was, I'm afraid, very visibly and vocally appalled. I'm flattered and touched by the idea that my son wants to spend more time with me. I appreciate his desire to be helpful, though at the moment my minimal needs for help (with shoveling snow or preparing for a party) are easily met by friends and neighbors. And I understand that it's important for him now, and will be important for him when, eventually, I die, to have spent time with me--though in my experience, one never feels one has had enough time with people who are no longer around. Still, how do I reconcile all this appreciation and understanding of his needs with my own needs and desires for solitude and for not perceiving myself as a "sickie." How can I even pretend my life is normal if my grown son leaves his home and his girlfriend 2,000 miles away to hang out with me three weeks out of every month?

Well, we compromised. This month he will come for a week or ten days, and he will do his work and I will live my ordinary Madison life, and we'll have dinner together occasionally, or take in a movie, or go for a walk, and we'll see how it goes. But it feels like a balancing act that the Cirque du Soleil might accomplish more successfully than I.

By chance, when I went to the airport this afternoon to pick up my fog-delayed suitcase, I met an old friend, a retired attorney who's close to 80, who'd just returned from spending a month in Seattle where his daughter has started treatment for ovarian cancer. When I told him about my son's desire to spend three weeks a month with me, my friend strongly urged me to let him do it. He didn't change my mind. But I was interested in his reaction, and I'd really welcome your comments and reflections on this conundrum.