Tuesday, June 3, 2014

No party necessary; thanks anyway

So, my stem cell transplant just turned a month old.

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.

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.”