Wednesday, August 6, 2014

Arnold hears a what!


It's like some horrid version of “Horton Hears a Who!”



Doctors describe multiple myeloma: It's incurable it's incurable it's incurable it's incurable it's incurable it's incurable.



Me: Huh?



Doctors: It's incurable it's incurable it's incurable it's incurable it's incurable it's incurable.



Me: Wait. What?



Doctors: It's incurable it's incurable it's incurable it's incurable it's incurable it's incurable.



Me: OMG!



At the first doctor's visit after my multiple myeloma had been diagnosed, just about 11 months ago, my oncologist told me it was incurable. In fact, it was the first word used to describe it.



Okay. Incurable. Got it. No cure on the way. Right.



Well, it turns out I didn't get it. No matter how many times my treatment team mentioned it; no matter how many times I used it to describe my cancer to people who asked; no matter how many times I've written it in this same space. I did not understand what incurable meant.



Before you get all up in my face about it, or all “Poor Jim, we knew. We could have told you”... I understood incurable, of course, but I didn't realize what it meant to me. In my defense, Sheri didn't get it either, and we're both smart enough about these things to be dangerous.



We were in Boston this week, to determine what my after-transplant treatment would be, and to try to find out what is causing all this stomach pain.



We had a lot of questions, but the biggest one was about whether or not my cancer was in remission. The doctor said, kindly, but professionally, “Multiple myeloma doesn't go into remission.” What? “Multiple myeloma doesn't go into remission.” What?



The explanation went on, likely because we looked so dumbstruck. “Well, remission means what?” Not a good time for a pop quiz, doc. “Gone, right?” Sure. “Well, myeloma cancer cells never go away. There are always going to be some present in your system...” waiting to strike... He didn't actually say the last part, but in my mind he didn't have to; in Sheri's either.



We then spent time talking about how well I was doing; how brilliant my blood work looked; how successful the transplant had been; how it seems we'd really knocked the cancer down to just a few cells... all of which is, obviously, wonderful, but...



I chose to write about this, by the way, when it was still raw to me. I know a lot of you really care about us and what is happening with my cancer. There's no need to worry. Outside of our thinking, nothing has really changed. Multiple myeloma has always been incurable and was always capable of coming back at any point. Most of you knew and understood that. It's still true.



I will process the new information as I always do, and deal with it in a positive fashion, giving it no more power than it deserves. Right now, though... I have stopped in mid-shovelful.



Part of me feels foolish for not realizing this sooner. It's a small part, though, because denial is my friend.



So, on the way home Sheri and I tried to figure out what was different this time; why we were finally able to understand what incurable meant to us. Part of it was that you hear these things when you're supposed to. Another part was an example he doctor gave us when we still seemed too thick to get the concept. He'd had a patient whose numbers were great, but within three months he was very ill. That took most of the “what?” away.



Multiple myeloma, then, will sit peacefully in my system, until it decides it doesn't want to do that anymore. Then, if it so chooses, it will come back. We won't know until it is already back, active, that it's decided to raise a little hell. Wow.



As I've thought about this, I realized that, at least in the way my brain looks at these things, there is one difference between incurable disease then and incurable disease now Before, we always had our weapon of mass destruction in hand. The stem cell transplant would knock the cancer down and we could get some peace of our own.



Well, we used that weapon and it did exactly what we were told it would do. It knocked the cancer down. It's our fault for counting on it to do more than was medically possible.



I'll continue to work at making this news right-sized, and get on with things. And, oh by the way, we still don't know what's causing the pain in my stomach. Next on the testing agenda: an ultra sound and a colonoscopy. Maybe this time the colonoscopy doctor will find my brains when he's poking around in there!



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.”