Salt and Pepper
June 8, 2007
That’s how Dr. W. described it, O Best Beloveds, how my cancer is currently manifesting itself, per yesterday’s PET and bone scan. “Salt and pepper disease,” an image nearly pleasant enough to get us past the motivation for the description, that in addition to a new small lesion on my liver, I now have flecks of cancer in and on various parts of my bones. Lower back, specifically, plus pelvis, spine and a femur, we think, but all of it so small and scattered it’s like the aforementioned standard spicing combo, nothing major, no giant areas of black, just almost charming little freckles of disease spotting my skeleton.
What’s that mean? Dr. W. isn’t talking “cure” any more–except kind of, but more on that in a moment–but rather “remission and holding you there.” Tomorrow, I start Xeloda, the oral chemo I did in combo during Cancer: The Return, seven pills a day, two weeks on, one week off, no side effects other than some hand and foot weirdness. If in three months, my markers have either held firm or better still, gone down, then good. If not, then he switches me to an IV chemo that should be similarly mild. Whichever works, then that’s what I’m on. And with that, we see how the tenor of matters has changed. No more is there talk of X number of rounds, or end dates for treatment. This latest development means that now he can’t trust me to be off chemo pretty much ever again, so even if I get into remission, I have to stay on whatever got me there. “This is your diabetes, your HIV,” he said, which is another way of saying this is my life, and oh, there are many levels to that, aren’t there?
But don’t think matters are grim, though they are keenly disappointing, nor that our trusty Dr. W. the Wonder Worker is even close to defeat. He could give me something for X rounds with a specific more or less end date, but that means a different kind of treatment, and there is a reason he’s not going that route. He doesn’t want to whap me with something powerful and toxic, and run the risk of ruining my otherwise healthy organs before their time, he wants to get me on something mild, to keep quality of life–and life overall–going. Additionally, this means he still has some aces in his pocket, as he put it, should one of the mild chemos not work, i.e., super triple blasto crap. So I go on Xeloda and I stay on Xeloda, assuming it works, for, well, that’s where some hope comes in. There’s a whole bunch of new meds coming down the pike–Dr. W’s boss just returned from a big conference where some remarkable treatments were presented–and one of them may well be The Cure, or something very like The Cure, and many of them should be precisely what I need, but they won’t be available to me for some time. So. Get me stable, keep me there, and keep that going for two years, and that may be enough. Just.
Meanwhile, they tell me they have several patients who have been on Xeloda for years and have been making their merry way on it without much impact, including one who regularly goes on safaris in Africa. (One pauses here to wonder how often they say “And we have this one patient who went to Estonia and Serbia while she was doing chemo!”) So honestly, what does it matter, apart from the fear and the dread and the rest of it, that is? With no side effects–so they say, and they better be right about the no nausea and the no weight gain and the no hair loss, because ya’ll, forgive me if this sounds shallow and with an utterly misplaced sense of priority, but I am looking pretty darn cute right now, if I do say so myself, and for god’s sake, I’m 43, how long can I legitimately claim to be cute? I mean, I can eventually, I hope, pull off elegant and graceful and even Helen Mirren-esque, but cute? Not many more years, that’s for sure, and I really really really don’t want to spend those looking like hell–that means little impinging on my life, and there is also the matter of still having a life, and that’s no small matter.
Oh, I forgot, I also go in once a month for some other kind of drug, administered by IV for an hour, that is supposed to help my bones. Apparently, as the cancer disappears, it leaves leetle holes, and this stuff will fill those holes in, to prevent my bones from getting too brittle. No side effects there, either, apart from “flu-like symptons” the first day, which was today, and which I’m already feeling a wee bit of.
So he’s telling us all this, and I was reminded of Elizabeth Edwards, who rather famously got breast cancer mets in her bones before I did, and I brought her up, and wondered “She said she now knows what will kill her. Do I?”
Yes, Dr. W. said.
Well, I did ask, but it was disconcerting to hear. “You do want me to be honest with you,” he said, rather than asked, because yes I do, even if, actually, no, I don’t, not really, I mean, not if he’s going to be honest with me, if you see the point. He then went on. “Look, you are 43, you are skinny [God bless you, I said, as always focusing on the wrong thing], you don’t have heart disease, you don’t have diabetes, there’s nothing else that’s likely to get you. But that doesn’t mean this is going to get you in ten years, or even right after ten years.”
Nor even twenty or thirty years, I honestly think, but what do I know? I don’t feel like a girl with salt and pepper on her bones. He asked me if I felt any symptoms, like pain anywhere, bone or liver aches, and no, I don’t, in fact, I feel really good, I was only recently commenting on how quickly I bounced back from nearly a year of chemo. I’ve never felt like someone with cancer, I only have ever felt like someone going through cancer treatment. What’s more, recently I had a towel wrapped on my head, to dry my hair, and I thought “I look pretty good with this towel on, even though it hides all of my hair. Why can’t I look this good when I’m wearing a scarf because I’m bald?” And I realized it’s because even though I don’t fully see it at the time, because it happens so gradually, I look like I’m sick when I’m doing chemo. I’m not doing chemo, and so I don’t look sick. I look quite the opposite. (See above rant about looking pretty cute these days.) So more than anything, I’m grateful that he’s going to do his best to make sure I don’t feel like a person going through cancer treatment, and may not even look like a person going through cancer treatment, even as I go through cancer treatment. I’m also grateful for cancer treatment and doctors who don’t give up.
I saw a poster in the Victoria and Albert gift shop that I nearly bought, just white letters on a red background, and a simple slogan. But I didn’t buy it and now I can’t find it nor even remember exactly what it said, something pithy and British and stiff upper lippy. I won’t do it justice now, which is a pity, because it’s exactly how I feel. It was something like…
Get going and get on with it.
Pills start tomorrow,