I thought about having a party, but I'm
not supposed to be around large numbers of people. I also can't eat
products from a bakery, so we probably wouldn't have had a cake. Soft
serve and hand packed ice cream are also on my don't list; in the
case of both of those, they're not allowed for a year.
We wouldn't have had a clown because I
hate clowns and it might have brought about a downturn in my health.
Besides, you invite one and they show up in one of their little
cars... the next thing you know you're up to your broken clavicle in
the damn things. I don't think so.
We could have had a pony, I suppose, to
go along with the name of my column, but I won't be allowed to be
around animals for a few more months.
But, hey, who cares. No, seriously- who
cares. So much has happened in the last nine months, so many highs
and lows, that to be doing so well so soon after the transplant is
all I need to be happy. I do like soft serve ice cream, though.
Anyway, I suppose it's only natural to
look back. After all, the transplant was the source of so much worry,
mystery and hope, to be a month past it after all the time spent
anticipating it... it just seems like a big deal.
Well, if we throw the last nine months
against the wall, what sticks?
I'm writing again, something I really
didn't think I would ever get back to. Even when I was working as a
copy editor at the Kennebec Journal/Morning Sentinel, it never
occurred to me to ask if I could write for the papers.
As I've noted before, the decision to
start blogging about being ill wasn't an easy one to make, and yet it
was probably inevitable. I did not anticipate it appearing in the
newspapers on a weekly basis, or in the newspapers back in New York.
And I had no idea the impact it would have on others. When people
tell me it helps them cope with whatever they might be going
through... I have no idea what to say. So I say “Thank you.” but
I mean so much more.
I have more friends on Facebook than I
ever thought would be possible. Odd as it may seem, there are quite a
few of them I don't actually know. I get friend requests on a pretty
regular basis. Most of them are friends of my wife, my kids, or of
other friends. But a bunch of them are people I don't know, or don't
remember, whom I assume are interested in following my blog and know
that having access to my Facebook page is the best way to do it.
I've learned so much about medical
procedures and medicines, that my doctors and nurses no longer have
to talk really, really slowly and use small words, while pointing at
pictures. One of the tricks was realizing that medicines can have
more than one name. Instead of looking lost when asked if I'm taking
such and such a medicine that doesn't sound remotely familiar, I can
ask what else it might be called. If I still don't get it, I chalk it
up to chemo brain and ask them to talk slower, use smaller words, and
ask if they have any pictures that might help.
For the first time since I injured me
“bee” rib on the Saturday of last year's Labor Day weekend, I am
free of pain. The pain went out with a bang just before my stem cell
harvest. The drug that was designed to encourage my sea monkeys
worked really well, and my bone marrow became packed with healthy and
cancerous cells. It really hurt. But once the millions of healthy
cells were harvested, the pain went away and it's stayed away.
I have plenty of side effects that I
don't love- nausea, fatigue, on again/off again appetite- but nothing
horrible, though there are days.
I have consistently been exposed to the
goodness in people. Back in the early seventies, I was president of a
volunteer group that helped run a teen center in the town where we
lived. I was talking to one of the young counselors, who was actually
about the same age as I was at the time, and he told me- “Wow you
really are a cynic. So many people pretend to be, but you really
are.” True enough at the time, I guess. But people's kindness
towards me has been so consistent and come from so many different
areas of my life, that I can't help but accept it as real and
genuine. I tried to scoff, but I am now scoff-less. I thank God for
that kindness every day.
I do struggle with “What's next?”
From the day my doctor told me I had cancer, a line of challenges lay
before me like the hurdles in a race at a track meet. There was
always another hurdle to get over, with all the anticipation and
anxiety involved in it. But there are no longer visible hurdles.
Certainly the work isn't done, but it's of a more general nature:
“Keep doing what you're doing”; “Make sure you're following
you're aftercare regimen”; “Let us know if anything seems wrong,
especially if your temperature goes above 100.5.”
Those aren't things you can jump over;
you just live with them. Obviously, the goal is to get back to
something resembling good health But since multiple myeloma is
incurable at this point, it's hard to be sure what good health even
looks lie.
I know that sounds negative, but I
don't mean it to be. There are so many realities to be faced as part
of this journey, that is just one more. It doesn't have a value of
good or bad; it's just something to face and find the funny in.
On the one-month anniversary of my stem
cell transplant, I find myself more grateful than ever; more
determined to wring as much out of every day as I can, even though
sometimes that isn't much. The periodic fear that I felt is absent;
there's nothing left to fear. I have work to do. But I know what it
is and I know what the result will be.
It feels like I might even be getting
closer to finding the pony.
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