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.”
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