This One Goes to Eleven
April 10, 2009
All sorts of medical hoohah over in these here parts, O Best Beloveds. We met with Dr. W. yesterday, and they got the molecular typing results in as we spoke. He gave us a copy, saying it was pretty clear, but we don’t speak Medicine, much less read it, so it’s gibberish to us. Nice to have our own copy, though. The basics are a list of chemos that won’t have a good effect on my tumors–several of them chemo regimes we’ve tried already, so thanks for that–and an encouragingly long list of chemo regimes that ought to have a good effect. There also is good news regarding my tumors’ hormone status, to wit, it’s still estrogen positive but is now progesterone negative. I honestly don’t understand why this is good news, but apparently he could put me on a regime that would make me even more sensitive to hormone treatment, and then we could try Femara (which more or less kept me in remission for nearly four years) again. But he doesn’t want to do that now because, well, because there’s a lot of cancer in my liver, and he doesn’t want to mess around.
So on Thursday I will start Iexmpra, which I keep hearing as Exemplar, a three hour drip (feh) once every three weeks. Most likely side effect is neuropathy, which, well, more on that in a moment. Possibly some nausea, but my usual drug regime should keep that at bay. Possibly hair loss, which, of course, I really hope not. I finally got a cut that stays cute. No weight gain, which is good, because I’ve done that all on my own, which is part of the reason the neuropathy–it can be bad enough to interfere with walking–is less than desirable news, because I need a lot of walks around the lake in order to make use of my pants again.
Well all right. I’m always a little trepidatious starting a new chemo, and it’s all the worse this time because I’ve had over a year’s worth of chemos that have been so easy, I’ve all but forgotten that’s not the norm. But Dr. W. is most encouraged; he’s got a whole list of things (including some not yet approved for breast cancer use, that’s how new they are) to try, and that’s comforting.
Now, about that neuropathy. I think I’ve mentioned how the tips of my left hand fingers have been numb for some time. Some months ago, my left arm got really weak. Like, I couldn’t do basic weight lifting moves with my usual ten pound weights. I thought it was my fault–it’s not like I’ve BEEN doing those weight lift moves, so I thought maybe my muscles in that arm sort of atrophied, even though that seemed awfully fast, and also uneven, since the right arm was fine. I kind of put it out of my mind because, well, I was embarrassed, to tell you the truth, that I might have neglected exercise regimes so much that my arm would get so weak. I know, totally counter intuitive, but there you go.
Then my upper arm got really numb, and tingly, and I actually couldn’t use it at all very well. You know how when your arm goes to sleep and you first try to move it, and it’s really floppy and you can’t quite control its movements? It’s like that. It’s like it’s asleep all the time, though it’s worse at some times (not predictable, just whenever) than at others. I’m having trouble typing, because I can’t quite control my left hand fingers. I’m making a lot of typos (I correct them) and often hitting the caps button by accident. I was walking with Quinn last week, and we stopped to get hot chocolate, and I held Hayley’s leash in my right hand (the strong arm) and held the paper cup in my left. But when I would move the arm up to take a drink, at least once out of every three sips I lost control of the cup–think “the drinking problem” from “Airplane!”–and sloshed it over my face.
So I went to a neurologist. I thought “pinched nerve.” He sent me off to get an MIR. Fine, why not. I spend a lot of time in CAT or PET or MRI machines, what’s a little bit more? The troubling thing was that this could be caused by a tumor that had developed in my brachial whatsit. But when I called to get the results he was out of town for a week. I spoke to the doctor on call and had the weirdest doctor conversation of my life.
HIM: I don’t actually know what to tell you.
ME: Well, what do the results say?
HIM: I don’t know, I don’t know your case, so I don’t know.
ME: Do you have the results there?
ME: You could, you know, read those. And then tell me what they said.
HIM: Hmm. There’s a large mass in your [something, he said it really fast] and a tumor in your [something, he said it really fast.]
HIM: I don’t know what this means. I have no idea what your case is.
ME: My left arm is numb and tingly and weak. There. Now you know everything the other doctor knows. So what do these results mean?
HIM: I don’t know.
I’d like to say I hung up on him, after asking him if he got his medical degree from one of those schools that advertises in the back of magazines, but instead I was polite. And waited for real neurologist guy to come back. When he did, he said that there was no sign of cancer in my brachial whatsis and gave me no clue as to what that large mass and tumor were, since apparently they were fictitious. I really have no idea what that conversation was. I almost think I dreamt it.
So what next? Why, a spinal tap. Which filled me with great anxiety, made all the worse when they call it a lumbar puncture. At least “spinal tap” allows me to think of Nigel Tufnal, who is always a source of great happiness. Dr. W. talked a long time with the guy, and said when we met with him that he heartily agreed with the need to have a spinal tap (“…where the banshees live and they do live well…”). All right, I said, and then idly asked what we do if we find tumor cells in the spinal fluid. “Oh, we don’t want that,” he said. “Because that means it’s in your brain.”
Oh, gulp. Because…wow, Beloveds. In my brain means…you know what? Let’s talk about something else. Hey, the movie makers showed “Spinal Tap” months before it came out at UCLA, and Suzanne and Matt and I went together, and we had no idea at all what to expect, it was completely fresh, and we nearly choked from laughing. I’ve only laughed that hard a couple of other times in my life. I don’t think any of us have ever really recovered from “Lick My Love Pump.”
So we had the spinal tap (“talk about mud flaps, my girl’s got ’em”) today, and I must confess that I was so scared I almost backed out, even though I was assured it was much easier than getting a liver biopsy. And in the end, it really was quite easy. They let Steve inside during the procedure, and he held my hand, which helped more than I can say. The doc fiddled around on my lower back long enough to increase my anxiety about how the procedure itself would feel, then injected some lidocane which only hurt a little bit, and then I didn’t feel a thing. It took awhile–neuro-doc wanted four vials of spinal fluid, about twice as much as is usually taken (and works out to about two teaspoons)–and to distract myself from how there was a needle sticking into (and milking!) my spine, I sang “Big Bottom” and “Gimme Some Money” in my head. Because the main complication is a bad headache (requiring some complicated procedure to relieve, though why they can’t just give opiates I do not know), afterwards I had to lie flat for a couple of hours and drink water. They also fed me, which was nice. And that was it. I hugely relieved, because let’s face it, regardless of what they find this time, this won’t be my last spinal tap (“too much fuckin’ perspective”) and now I won’t be scared to have one again. Much, anyway.
So assuming the test comes back negative, and there’s nothing in my brain except a conflicting desire for Rick’s latest creation, Pig and Pig and Pig in a Blanket (little smokies wrapped in ham wrapped in bacon in a puff pastry) and my desire to fit in my clothes, what’s up with my arm? Both Neuro-Doc and Dr. W. agree; a tumor so small that it can’t be seen on the MIR. Postulating like that leaves me dubious: I mean, if we are talking about something that can’t be seen, why leave off speculating at something like a tumor? Why not an invisible giant spider? Or an invisible cookie? But say we go with the “tumor” hypothesis; if the chemo works, it will shrink with the other tumors, and then I might get my arm back.
Speaking of, I asked Neuro-Doc what would happen if we can’t figure out what’s wrong and/or if we can’t do anything about whatever is wrong. Will I ever get my arm back? “Maybe not,” he said. And that’s bad enough, but what goes along with that is—see, all along, with the exception of early on when I had a breast lump I could feel, my cancer has never manifested itself in a visible way outside of CAT/PET scans. This has lead to a lot of confusion for me; normally when you are sick, you know you are getting better because you feel better. With this, I feel fine, and then they do crap to me to make me better that makes me feel worse. Then I have to recover from the treatment. Assuming that the cancer is behind the arm situation, this marks the first time the cancer itself has interfered with my life/health. Possibly permanently. We may have crossed a line here, and it’s disturbing.
This week will bring those test results, as well as the new Exemplar chemo. I will also finally track down an occupational therapist and see if there’s anything I can do to make my arm better/stronger/controllable. Meanwhile, I’m counting the days until Jazz Fest. (Good news; new chemo won’t interfere so no need for complex negotiations to get me down there.) Because as we know, a course of crawfish and couchon de lait is what the doctor really ordered.
There is a fine line between clever and stupid,