Snorkeling and Chemotherapy

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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.