On the face of it, it isn't a bad thing. Au conraire, it's by choice and part of my post-transplant regimen. It's the same pill I was on before the transplant, only the dose is different. I had been taking 30 mg and now I'm on 10 mg.
On the even more positive side, it's the only part of my former regimen that remains. I had also been taking steroids, which changed me into a truly manic person who could not stop talking for at least two days after a dose. Nor am I taking Velcade, which was given IV and meant I had to sit still for about an hour. Believe me, I was always careful not to have a Velcade treatment any time soon after taking steroids.
I do have to still submit to a questionnaire/survey from three different sources each time I call to have the prescription refilled. You may remember some of the questions: Have you had sex with a woman who is pregnant or could become pregnant? If so, did you use a latex condom? Are you apt to have sex in the next 30 days with a woman who is pregnant or able to become pregnant? And a few more just like them. I have to answer to three different people each time. EACH time. The SAME questions. Oy.
When the appropriate amount of time had passed, my doctor asked me if I wanted to go back on this particular drug. It seems some doctors are for it and some doctors aren't sure it makes a difference. I didn't ask my doctor which type he was, I just told him I wanted to get back on it even if there was only a slight chance that it would prolong what we have learned to call my remission, even though it is a misnomer.
After all, my chromosome 17p deletion could already be working against me, so I wanted to be sure I am carrying my share of the load.
Now, here's the thing: I asked to be given the drug, knew I was going to be taking the drug, and yet... All I can think of right now is how ill I feel and have felt since I began taking it again. You might think it would have occurred to me that, after taking only relatively benign medicines for about a year- well, not counting my stem cell transplant and accompanying drugs, that is - that reintroducing this into my system would have created havoc. And you'd be right, or at least smarter than I was.
It isn't even just the fact that I feel ill all the time... after all, I've been dealing with my stomach issue for months, and that has made me feel less than great much of the time. You know what I've gone through trying to deal with that. Trust me, I wouldn't have gone through half of it if the pain and sick feeling weren't considerable. Regular readers might also have noticed I was trying to sound so brave; a sure sign that something isn't right. (That last bit was kind of a joke, but not really.)
The thing about how being back on my chemo is that it makes me feel like I have cancer. I'll pause while you let that sink in. The way I feel taking my chemo again makes me feel like I have cancer. Sounds wrong, somehow, doesn't it? True, though.
Part of it is that some of the old pains have come back. My ribs, collarbones and just about every other bone, including the head bone, are aching. My stomach hurts worse than ever and the overall pain wakes me up every morning. With awakedness comes fear and with fear cones the internal debate about whether I want to get out of bed today, or not.Now, we all know I've been through so much more than this, so why am I being such a baby about it? Good question. I do not really know. If I had to guess, though, I think the absence of feeling like this had lulled me to sleep.. It's not that I forgot I had cancer. I think that, maybe, it had lost it's place at the front of the line. Well, maybe it was like it was still first in the worry line, but not all day, every day.
Besides, stomach pain aside, I was actually feeling pretty good! I guess I got used to it.
Here's the thing, again: remembering I have cancer means remembering all the things that having cancer can lead to, all the possible outcomes. Bluch.
So, I genuinely believe that this won't be a long-term thing. I think my system will adjust and I'll be good to go. Anyway, my guard is back up and I won't be taken by surprise again.
Hey, I didn't even tell you the worst part. Sheri and I were talking about this this morning. She's seen how uncomfortable I've been; the lack of appetite, the grimacing. She said, “You know what? When I look at you, and the pain your in, I remember you have cancer.” That's the worst part.
There are a variety of versions of the story that gives this blog its name. The pony is the constant in all of them. A man is on his way to a party when he comes across a young boy shoveling ass over tea kettle at an enormous mountain of manure. The man asks the child if he wouldn't rather go with him to the party than shovel all that poop. The kid says, “No way man. With all that poop... there must be a pony in there somewhere.”