A Brief but Unpleasant Disappearance

In spite of a rough Round One of chemotherapy, Rick and I decided to proceed with our plans to visit Tucson for a week this month. We are trying to make decisions in favor of living our lives instead of in favor of fear. That might sound all spiritually evolved, but for a while there I was pretty sure we'd made the wrong decision.

On the morning of our departure – a week after Round Two – I woke up puny and went downhill. We had a 14-hour day of flying and driving, and while I wasn't exactly in pain – except for the mouth sores, which made my daily 2,869,421 pills quite a chore – I was beyond exhausted. Like a wet kleenex. I couldn't get up or move around or hydrate or anything. It was like death, but with nausea. I couldn't even read, and you know I'm down way, way low if I can't read. Sitting idle without reading is a thing I never do in real life, because it is unbearable. But sit and lie idle I did, for about 48 hours.

Exhaustion may actually be a good sign, because apparently tumor lysis (the metabolism of dead cancer cells) is very, very hard work for the body (so says my son, the student of cellular biology). If I was that wrung out, there may have been a lot of dead cancer cells to metabolize. At the time, though, I was just convinced they were killing me with their medical treatment. I was gone. I had no physical presence, and I had no personality. On paper that sounds kinda peaceful and Zen, but it really wasn't. It was awful.

I knew I was perking up yesterday morning when, while sitting idle in the car, I found myself reading the air-bag warning on the sun visor. You know how it's printed in both English and French. The French word for “injured” is blessés, which looks like it should mean “blessed.” By contrast, the word for “seat” is siège, which looks like it should mean “siege.” Children may be gravely blessed by air bags. A siege of children should always be rear-facing.

Personality reappearing. I am still alive.

No one told me about the wind-tunnel phases of hair loss.

A Hair Out of Place

When Rick got home from work yesterday I pointed out that Ducks linebacker Michael Clay used to be a deep snapper, but is no longer. Rick had to wonder what had gotten into me, reading the sports page like that. Well – I didn't read it on purpose.

Everybody knows you lose your hair when you get chemotherapy, but the precise trajectory of hair loss isn't one we usually dwell on. Hair doesn't fall out all at once like leaves from a cartoon tree. You start to shed a few hairs at a time, like a cat. Pretty soon there are individual strands everywhere, but still, you can see that if you let it go on like this the process is going to take months. So you comb your fingers through your hair, and you get it to come out by the fingersful. It sounds horrifying – okay, it is sort of horrifying – but I've made a little project of it, combing over my scalp a few times a day with my fingers and taking out as much at a time as I can. It doesn't hurt. But you wouldn't want all that hair going down the sink. So I've been setting the sports page in the basin to catch my sheddings. And, well, in the process I couldn't help reading what was printed there, the way you can't help reading street signs and cereal boxes. I'm sorry, Michael Clay. Maybe I should start eliminating my chemo-stunned tresses into a copy of War and Peace.

On Hubris and Blood Cells

At two in the morning Friday, Soviet secret agents broke into my bedroom, having mistaken me for Leon Trotsky, and sank an ice ax into the side of my face. Naturally this rudeness woke me right up. I staggered out to the kitchen and, while rummaging through the cupboards for Vicodin, I ran my hand over my cheek. Not finding an ice ax embedded there, I realized I must find an alternate explanation for my pain.

The pain turned out to be an infection, possibly self-induced through overzealous flossing. They told me when I got chemotherapy to floss very gently, if at all. But I thought that advice was directed at, you know, sick people. A lifelong flosser, I assumed my gums were tough enough to withstand ordinary dental hygiene. Chemo kills the cells in the mouth and makes it tender and vulnerable, so it is likely that, while flossing Thanksgiving dinner out from between my bicuspids, I nicked my gums a little and introduced bacteria into my bloodstream. Now, chemo also clobbers the white blood cells, so a little bacteria can become a big problem. This probably is what happened to me, due to my flossing hubris. Like the protagonist in a Greek tragedy, I fell because of my own pride. Come to think of it, isn't there an overzealously flossing king in a minor play of Aeschylus?

I spent most of Friday in a stupor of pain and pain meds, and then at some point realized I was probably running a fever. When you're running a fever you have to call the oncology nurse, and the oncology nurse got right to the point: You have to go to the E.R., she said. So off we went, and they gave me a blue face mask that accessorized very nicely with my blue pajamas, and they had me wait. Visits to the E.R. are very long and consist almost entirely of waiting, interrupted by needle pokes.

After about six hours of waiting and poking they ascertained that I had neutropenia. Neutropenia sounds like a kind of invasive species, a hairy swamp rat introduced in the nineteenth century for its fur which is now, in the absence of natural predators, wreaking havoc on Pacific Northwest wetlands. But that's not the case at all. Neutropenia is the condition of being very low on white blood cells. Turns out I was severely neutropenic, and so after numerous additional pokes I was admitted to the hospital and then, because my blood pressure was dramatically low, to the I.C.U., where I spent the day. I've been allowed to come back down to the regular hospital for my second night, which is where I am now, but I won't get to go home until those white blood cells increase their numbers by a factor of 10. Go, little blood cells, go.

Hair Today, Gone Tomorrow

Sometime soon I am going to lose all my hair, so I decided to make the transition between long hair and no hair easier with a cut. (Three shedding cats in our household are enough). Wonderful Sabrina at Primp on 43rd and SE Division in Portland did the honors. Here are my before and after mugs.

Okay, "almost normal" didn't last very long. I had, I think, one day between the end of the nausea (phantom butter smell chasing me around everywhere) and the beginning of the cells in the lining of my mouth committing hari-kari -- a condition that results in all food tasting like baking soda. Then the mouth cells began to recover, but I started to develop neuropathy. Some of the many meds they're giving me are administered by the thousands of milligrams, but one particular drug, vincristine, is so exquisitely poisonous that the dose is just two milligrams, and it is responsible for damaging the nerves in the fingers and toes of 30-40% of chemo patients. I am displeased. Thus far my toes are fine, but the tips of my thumbs feel like I've dipped them in liquid nitrogen. My primary concern is the potential impact of neuropathy on my piano playing. Because, let's face it, my piano playing could use all the help it can get, and does not need another impediment.

Had my first round of Chemo on Thursday. They gave me EIGHT drugs -- nine if you count the numbing spray they give you before the needle -- plus two required and four optional drugs to take home at the end of the day. This free-ranging, all-organic, whole-foods body didn't know what hit it. Actually I think all my clean livin' stood me in good stead, because these drugs can and often do have some gnarly side effects, and I hardly felt them. I was at the hospital almost nine hours. I slept through about a third of the treatment and spent the rest reading. The day after chemo I was a little queasy and a little catatonic, but today I feel almost normal.

I do have to say I'm impressed by the toxicity of the stuff. When the nurse administered the chemo she wore an extra gown over her scrubs, along with her gloves and mask (and I got a gown over my jammies). When you pee you have to flush twice, because they don't want anybody else accidentally coming into contact with the toxins on their way out, even diluted with urine. If you dribble pee on your clothes you have to take them off and wash them twice. These are some bad-ass drugs. Of course the environmentalist in me notices right away that all this toxic pee is going straight into the river. As they used to say on the Sopranos, whaddyagonnado?

Jan's Health Updates

Hi folks,

I'm sure posting an announcement like that on Facebook is in poor taste. But the one-on-one conversations have become overwhelming (and anyway I never like to pass up the opportunity to write a smartass haiku).

Over the past several weeks I have undergone a series of pokings and proddings that confirmed a diagnosis of Class Three Follicular Lymphoma (lymphoma being a cancer of the system that's meant to protect you from cancer. Neat trick, huh?) This is actually a second-time-around for me; I went through lymphoma and treatment back in the late 90s and got a very long, productive, healthy remission. And now it's back.

The treatment has the unfortunate name of R-CHOP. It sounds like butchery, but it involves no knives; just poison. I will be spending one day every three weeks in the hospital starting Thursday, Nov. 10. After three rounds of chemo, they'll scan me again to see what's what. Eventually they'll get the wretched stuff shrunk back down to nearly nothing, and then I expect to get another nice long remission, if not an outright cure.

I expect to keep teaching on my usual schedule through the school year, but will not be jumping up and down to take on extra projects. It's likely that I won't feel very well, but actually I may feel better undergoing chemo, in spite of its toxicity, than I do now. The cancer itself has been making me pretty puny for a couple months. If I lose my hair, I plan to start wearing outrageous headdresses piled with fruit.

People often ask what they can do for me, but it's hard to think of anything. Rick and I really don't need meals, and anyway I have all sorts of tedious food restrictions that make it almost impossible for someone else to feed me. If you have movies (DVDs or videos) that you'd care to lend me, I'd like that; I think I'm going to be spending a lot of hours on the couch this winter. You can post get-well messages here or email me or send a card if you like. I'd rather not talk on the phone. I've never liked talking on the phone, and I'm even more phone-averse now than ever.

I'm not really planning to blog about cancer -- ugh! I'm already so sick of it as a topic! -- but I will post updates here periodically. Feel free to pass the info on to other friends and acquaintances as you deem appropriate.

cheers,
Jan