Friday, January 17, 2014

Oh chromosome 17... Why you no work so good?

You're a whole different person when you're scared.”

Warren Zevon

So. The plot thickens.

I had my consultation with the oncologist who will be overseeing my stem cell transplant at Boston's Dana-Farber Institute this week. Since Sheri was still sick, my friend Bob drove me down and, the doctor was happy to initiate and teleconference so Sheri could participate. Excellent.

First off, we talked about me as a candidate for the transplant. It turns out I am an outstanding candidate for the transplant. Yeah, baby. Best one in my row... as usual.

Odd thing about the transplant: All the health professionals I've talked to describe the process in words you don't usually hear from health professionals- “brutal,” “arduous,” and I think I heard at least one “horrible.” Okay. But I'm a Mainer Lite, don't forget. When something is going to be wicked hard, we call that a good starting point. Besides, the same professionals all say it's completely worth it and can make a huge difference in remission time and quality of life.

Right. I'm in. When do we start?

Well, says the doctor, you have a rare and serious genetic disorder that impacts your multiple myeloma in a big way that we nee to talk about, My first thought was, “Of course I do.” My second thought was, 'Roh roh.”

I'm still sitting there thinking that I'm the best one in my row, so I might have missed part of what he said. I did not miss “rare,” “serious” or “disorder.” Normally when I write about the actual heath aspects of my journey, I don't give a lot of detail. Remember... what I know about human anatomy I learned from the song “Dem Bones.” Anyway, I need to live in the solution, not the mess, and what I really need to know is what will help me do that.

In this case, though, I really was completely unprepared for a whole new set of issues. Turns out I have chromosome deletion 17 p. We're really just beginning to deal with it, but the doctor is fairly sure it was inherited from my parents. Now, there was a time in my life when I blamed anything and everything that went wrong in my life on my mother and father. Yeah. I know. But, that's how it was.

Now that I've moved beyond all that crap, there's no one to point a finger at to say, “You did this to me!” Nope. Poop happens and sometimes it happens to you. I do miss the occasional finger-point though.

Obviously, when you hear something like this, it takes time to process. I'm usually a pretty quick processor, but this is taking a bit longer. Its also a complicated issue and my chemistry skills are not really up to it. Again, I find myself wishing I'd paid more attention ins school. Hell, I had take chemistry twice and still barely passed.

So, as far as I can tell, the impact of this chromosome deletion in cases of multiple myeloma is that it generally cuts survival rates in half. Also, the stem cell transplant will still be effective, but the rate of remission will also be reduced . I think part of the problem is that so few people have this chromosome deficiency and multiple myeloma, researchers are hard-pressed to find sufficient data. So my head is wringing and I country see Sheri, but she was very quiet so I knew her brain was also working overtime.

But then... But then,,, We got to the good bits. My DNA includes a broken chromosome that is going to cause us a lot of pain and very tough time. Fair enough. But my DNA also has a strong no quit gene, that I think I also got from my mother. Sheri has the same and I could tell the doctor made three.

The new treatment plan is being formulated now. First, what we have been doing has been so remarkably successful, that we continue with most of that. Again, the things I have read about this say the best treatment is to add a powerful intravenous chemo, to the mix, along with the chemo pill I've been taking, which is what we're going to do. There is still an impact to the transplant, and chances are very good that any remission will not last as long. However, it should last longer than if I didn't have it done. Again, sign me up.

Some of the treatments and medicines I'll be taking are relatively new. The Dana-Farber doctor said that all of the things we are trying and doing are, basically, to buy us time. New treatments are in various stages of development, and no one knows when/if a cure will be found.

I have a tremendous amount of gratitude around what's happening to me and my family. There's hope, you see. It isn't false hope, or wishing hope, it's just good old-fashioned faith of our fathers hope .Give me that, the amazing health professionals who are working on my behalf, my wife, our three girls Jennifer, Alison and Kristie, and all of you who have been so supportive... I'm reminded of a line from “Ghostbusters,” right after they thought they'd won: “We came, we saw, we kicked its ass!” Of course, it wasn't quite over and there was a lot more screaming and crying before it did end. Details, man, details. I'm looking at the big picture on this one.

As we were wrapping up, the doctor gave me a hug and said, “Jim...multiple myeloma is incurable in January of 2014.” That, brothers and sisters, epitomizes the hope I feel as we head into the latest stage of our journey together.

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.”