We start tomorrow.
Let's think about topotecan. It's been around forever, forever comprising my direct experience: at least eleven years. (Before me, beyond me, there was nothing.) Its side effects are said to be relatively minimal. It attacks cells by interfering with their growth; they don't grow, they die. It whacks out the blood counts, but I don't know of a drug that doesn't. And its most appealing feature is that it is a quick infusion of thirty minutes -- none of that hours-long Gemzar nonsense -- meaning I should be out of the infusion center in a few hours tops (it all depends on how quickly the lab can do the CBC, which varies wildly at the hospital where the party happens.) Three weeks on, one week off, restart.
The bad news is that I have an illogical (I'm sure) regard for topotecan as a lightweight, last-ditch, ineffective hail mary that only gets pulled out when it's pouring rain under the stadium lights, the fans have left the bleachers, and the coach from the visiting team refuses to just run out the clock so we can go the fuck home already.
In my head it's the... wait for it... Sarah Palin of chemotherapy.
Why? How can I have such a strong opinion and weak expectation of a drug with which I've never rumbled? It originates with the very, very bad idea (for us) to attend a cancer support group/information session in March 1997 at the hospital. You know who goes to those things? People who've just been diagnosed, and people who are on their way out the door. I'd had surgery on Valentine's Day; I don't even think my hair had left me yet. Anyway, M and I were young -- I was 35, he was only 26 -- and we didn't realize how fresh we were into this thing. Compared to us, everyone else looked old, sick, scared, and angry as hell.
I remember this woman sitting next to me, fiftyish, having been through the fuggin' mill, skin blotchy and hair thin, who was firing questions at the doctor as though it were a private consultation the rest of us were being allowed to sit in on. She wanted to know about intraperitoneal chemotherapy (the "bellywash" where they skip the veins and put the weed killer directly into the abdomen, yik, never had that done), she wanted to know about why her CA125 wouldn't come down below 62 (I remember this very clearly, curiously), she wanted to know how she could lose the extra sixteen pounds she'd put on, and she wanted to know how long the topotecan would work. I remember the oncologists' answers: it's not appropriate for the type of tumor you have; I don't know; eat better and get exercise; I don't know. There was another woman, there with her husband, the two of them looked desperate in different ways, she impossibly thin, with waxy skin and wide sunken eyes, he with twitches and stutters and a voice so soft it didn't matter, in the purest sense, that he was asking questions. "Topotecan. We're moving in that direction. It's the last thing we're going to try; it's our last option. What are the chances?" Meaning what were her chances.
These are questions I will never ask; statements I will never make. I know now what I didn't know then -- that the white coats are just for show. Oncologists are alchemists, fooling around with beakers and calculations and elements and hoping they don't blow up the lab. They don't have any way of knowing, so why ask? Why let someone else plant the idea in my head that I have some percentage of life left in me? They don't know. It's a good thing I know they don't know.
So, yes. Topotecan. Henceforth to be thought of and referred to in our house as Topo Gigio, everyone's favorite imp of an Italian clown. See his antics? What a scamp!
3 comments:
I have been in Sacramento all week at a conference. Mind numbing? Why, yes. Plus, it kept me from the internet.
Or you would have heard from me every day. This is what I'd have said:
First, I'm putting my rejection letters and notes and e-mails in a folder labelled "F-U". I'm too ladylike to spell that out. GIve me a couple months.
Second, I'm going with the drug that most closely resembles a delicious plate of pasta. It seems to me that is better than any of the other reasons for going with anything else.
Third -- on politics: I've just watched four days of cable tv news in my hotel room, which is what I had to do because I had no internet access. OMG. No wonder things suck as much as they do.
Fourth? I want to hear more about your novel. If you want more readers, send it to me! Okay?
xo,
Lily
My friend Lily, you are so lovely!
Yes, difficult as it may be to fathom, I don't quite have the cojones to make an F-U folder of my own (and not because I'm ladylike!). I think it's because I only sometimes feel like flipping off the rejectors; most of the time, I'm in a more rational frame of mind and know I'll want to send more work to the journal in question. Trying not to take it personally. Trying.
The drug we chose may as well have been selected by my five-year-old. Even the nurses in infusion do a little dance when they say its name: topotecan. "Like an Aztec goddess, or a really fun Mexican drink!" said one yesterday. Yes. Very fun.
Five days of nothing but cable during the worst financial crisis since the Great Depression... and nonstop coverage of McCain looking psychotic and ... what's up with his eyes? My sister and I both noticed this week that his pupils appear dilated, entirely black, like maybe he's self-medicating, or they gave him some dark contacts to make him look more... accessible? Did you notice that? At any rate, your brain must be fried like chicken. Which brings me to...
The novel! Congratulations all over you for being named a Finalist in a national contest, and nothing but good thoughts on the future of that book. The future of my own book is, I'm afraid, quite scattered, and nothing I'd ask anyone to read if they didn't have to (as they do in workshop). Thank you for your offer to read it, Lily. I'll take you up on that when I get a bit farther into it and actually understand what I'm trying to do with these infernal characters.
So nice to see you, and I know your boys are glad to have you back.
xo,
E.
I don't know where to begin describing how and why I'm appalled. I should say first that I spend a good part of my day dealing with biotechnology companies and the magazines and information portals that are supposed to be translating the new lab/scientific revolution into the clinic. Clearly all has been lost in translation. Either that or the process is simply so monstrously slow that. . . I'm stumbling over my words. I'm so furious at the absurdity of this process. There were breakthroughs a dozen years ago that should be in practice right now, but are not, and I don't know why. With everything I've been reading about our new understandings of the genome, about biomarkers, and even, occasionally, about new drug targets, the fact that all they have to work with for you are these blunt instruments (alchemy as you say - faith and explosive chemicals) makes me angry.
I can't be angry at the universe or the creator or whoever because I need to believe that he/it has a plan when people I love get sick. But I have no problem getting mad at FDA, or lawyers, or drug companies, or even doctors or labbies, for stalling out our long-promised life sciences revolution. But I don't know enough to assign blame. And there's probably plenty of that to go around anyway.
You may know that months ago I told M that he should start a blog about this very issue. An investigational blog. "I don't give a shit about the flying car or the flying segway, where are my good fucking drugs already?!"
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