Thursday, July 31, 2014

Making sure my 4:30 a.m. expectation is ready

4:23 a.m.

Great time of the day to wax poetic, right? The stark, gray dawn slowly blah, blah blahing its way past the night's jibber-jabber, bringing a new whatchamacallit

4:24 a.m.

filled with... know... and so on, and so on and scooby dooby do-oo.

4:27 a.m.

Used to be the time of day to break out the old Sinatra 78s- “So set 'em up Joe. I got a little story you ought to know.”; The Beatles' 45s- “Yesterday, all my troubles seemed so far away.”; the Nirvana cassettes- “A mulatto, An albino, A mosquito, My libido, Yeah.”; and now the Jason Mraz CD- “I say the tragedy is how you gonna spend the rest of your nights with the light on.”

4:34 a.m.

I used to love the drama of it. The boo hoo of it all. You know... The blithering... As another uncaring sun pokes at the ashes of yesterday's lost possibilities, here's the lonely, long-suffering... what? Poet? Writer? Artist? Anarchist? Dylan Thomas wannabe?...Poor me, poor me, pour me another.

And so on a.m.

Why is all this malarkey running through my brain, and why do I feel compelled to share it with you? Because and because “why not?”

Look. What I really want is to know what's going on with my cancer and why do I have these pains in my stomach. I say pains in my stomach, specifically, because they are the latest to make themselves present and available for duty and they also seem to the only ones that can't readily be tied to bone damage from the multiple myeloma. The only reasonable time to work on those sorts of issues is as the stark, gray dawn is slowly blah, blah blahing its way past....

I've been quite careful, I think, about setting expectations for myself around having cancer; getting my hopes up, if you will. I think I missed it this time, though.

Yes, we were focused on the transplant, as we should have been. But, it's been almost 90 days since the transplant was completed, so when we set this week as the time to find out if the cancer was in remission, I pretty much bought into it, without the usual caution.

Black or white, baby. Either it was in remission or it wasn't. Yes or no.

Well, let me ask me a question. What was I thinking?!?! Hmmmm? What? Go ahead. Mr. Big Brain tell everyone what you were thinking. Oh, that's right, you didn't need to think- you KNEW it would be remission or not. Despite the countless situations in which you've found yourself during this journey, ones that lacked a definitive answer, you KNEW this would be the one to provide a definite answer. Black or white, baby; remission or not.

Well, let me ask me another question: What the hell is wrong with you!!!!! OK. Maybe that one's too hard, so let's just share with the folks the answer to your question about remission. Yes or no? Is your myeloma in remission, or not? Excuse me? What was that? You're mumbling...Yes or no?

Maybe. You're actually saying... mumbling... maybe? Oh man...

The answer wasn't even maybe, was it? Your nurse navigator (who is marvelous, by the way) could only pass along what the doctor said and he said the blood work was “encouraging.”

Now, obviously, that is good news; encouraging is good. But it isn't yes or no, is it?

Could I have pushed? Sure. Could I have gotten the doctor on the phone and done some poking and prodding of my own? Also, sure. But I'm going to Boston on Monday to see my oncologist at the Dana Farber Institute who is actually head of my treatment team, so he's ultimately the one I need to ask anyway, professional courtesy and all that.

So, for our Boston visit, I'll have my expectations with me, but they won't have a front row seat. They can be in the big bag with all the other stuff Sheri and I have been dragging around with us for the 11 months since I was first diagnosed. Yeah. That seems about right.

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.”