Still, here I am again this week, after
101 blogs, saying, “There seemed to be quite a few people who were
upset by my column last week, and in particular about what I had to
say about dying with cancer rather than living with it. Let me
explain...”
Brothers and sisters, I swear I knew
exactly what I meant when I said that, but upon re-reading it after
the concerns some of you had started to surface, I can easily see why
you would wonder what the heck I was thinking.
The thought seems to go against the
very core of what I believe, what I have been espousing in my
writing. I continue to face my cancer on a daily basis and don't back
away from the challenges. I am not sitting morosely pondering my
demise, far from it.
But I am human. I have just gone
through a period that I would call crappy, but I don't use words like
crappy, so I have to come up with something else. In the past three
or so weeks, I have spent more time feeling sick, tired, and
discouraged than the rest of my time with cancer put together. I was
lost, is what I was... Completely lost, with little idea of how to
find my way back to expressing how I truly feel as we near the second
anniversary of my diagnosis.
Add to that another issue with last
week's remarks about dying with cancer rather than living with it...
I forgot about one of the important factors I must- absolutely must-
remember when I am writing or talking about cancer in general, but
more important, about MY cancer. It's a hard and fast rule. Well,
maybe not a rule, more of a guideline. Yeah. Guideline. Definitely
just as suggestion.
Sheri and I, and to a certain extent my
family, live with my cancer day in and day out. We can't get away
from it. We try, and, we succeed more often than not. We have
wonderful times together despite the fact that I have cancer.
But because we are never far away from
knowing I have it, I tend to forget that cancer remains a scary word
to a lot of people. I can't think of any health issue that has
touched so many people. And when people have cancer, and they're
people we love, we see pain and fear and sadness, but, if we're
lucky, eventually we see happiness as the cancer loses its fight and
some of its bite, for that matter.
So, I try to remind myself, constantly,
that I can't talk about having cancer in any sort of casual manner.
That I can't introduce the subject of death without clearly
stipulating just exactly what it means to me... right now...while I'm
writing about it THIS TIME.
And that, brothers and sisters, is what
I did last week. I forgot that cancer and dying are big words, big
concepts and can't just be dropped into a conversation, otherwise you
end up spending another column trying to explain yourself.
So, to review. I remain optimistic in
this struggle with multiple myeloma and will continue to poke the
disease in the eye whenever I can. To that end, we have actually made
a major change to how I am fighting this good fight.
Since my step cell transplant, I have
been taking a maintenance dose of an oral chemotherapy drug. Both my
oncologists left it to me to decide whether I wanted to do this or
not. Since it seemed like one of the few active alternatives, I told
them I wanted to try it.
The problem is that I have been so sick
and so tired that I've really had to look at what's up with that? We
have agreed I'll drop it from my regimen until my next monthly check
up and see what happens. The “what happens” can be a little
disconcerting, since it could, conceivably, mean the myeloma becomes
active again. Our hand has been forced somewhat, though, because of
the constant nausea and fatigue.
So... “what happens” it is.
Obviously, you'll know as I know since I keep you aware of what's
happening, even though it may take more than one whack to get the
message across! Thanks for sticking with it.
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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