The plot thickens. I had my consultation with the oncologist who will oversee my stem cell transplant at Boston’s Dana-Farber Institute. Since Sheri was still sick, my friend Bob drove me down, and the doctor was happy to initiate a 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. Odd thing about the transplant: All the health professionals I’ve talked to describe the process in words you don’t usually hear from them — “brutal,” “arduous,” and I think I heard at least one “horrible.” OK. 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 affects your multiple myeloma in a big way that we need to talk about, My first thought was, “Of course I do.” My second thought was, “Roh roh.”
I might have missed part of what he said, but I did not miss “rare,” “serious” or “disorder.” Turns out I have chromosome deletion 17p. The doctor is fairly sure it was inherited from my parents.
There was a time in my life when I blamed anything and everything that went wrong in my life on my mother and father. 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.
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 also will 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.
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. We going to add a powerful intravenous chemo to the mix, along with the chemo pill I’ve been taking. 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.
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.
It’s my party and I’ll cry if I want to
Anger. It’s always been part of my emotional mix, but this week it really got out of its cage and did its version of the happy dance in my head.
Angry at what? Duh.
Angry at who? Pointless question.
The only “who” would be fate, the cosmos, or in my case, God. But that’s the same God who directed me to the Alfond Clinic, and ultimately to the Dana-Farber Institute who not only is aware of chromosome deletion 17p but employs the most successful method of reducing its impact on stem-cell transplants. So … maybe God, but not in the long run.
I guess it was “one more thing” that really set the whole thing off.
The day after I found out about the chromosome issue, while I was still trying to process just how life-threatening that could be, I started to feel like I was coming down with something. By the time Sheri came home on Saturday, I had gotten quite a bit sicker, so it didn’t take much convincing to call my oncologist at Alfond. He told me to go to the emergency room and find out what it was and then we could decide what to do next.
So, Sheri and I spent Saturday afternoon in the emergency room getting blood work and X-rays, and I got poked, prodded etc. Sheri provided the essential support. After recent events, I half expected to be told that I had something only three other people in the country had, and they all lived in Iowa.
Well, the PA came in and told us I had “Influenza A.” He said it with such flourish that it took a couple of minutes for me to realize that he was talking about a specific strain of flu. So many things present themselves as flu, that aren’t, it was his way of saying that what I had was the real deal.
Influenza A sucks. It put me flat on my back with a cough and congestion I haven’t suffered in a long time. There was also the feeling that Sheri being gone for the week had been a waste of time. As I lay in bed, feeling crappy, with little else to do, my anger had free range.
The flu?!?!? Are you kidding me right now? We’re still dealing with the fact that I have a chromosome abnormality that is a game changer, and I can’t even finish dealing with that because my brain is mush from the flu. I made a decision: Time to play the “not fair” card.
And that’s what I did, at least in my head. It just seemed like a bridge too far to ask me to deal with all I had to deal with … and the flu. The flu made everything seem worse. It just didn’t seem fair.
Now, that thought string runs counter to everything I believe; everything I have written here before. But I guess when you’re in a life or death struggle with your own body, momentary lapses are to be expected.
As the flu made its way back to whatever hell it came from, my anger started to recede as well. I don’t apologize for it nor for playing the “not fair” card. It’s my party and I’ll cry if want to.
Leave it to my wife, though, to put it all in perspective, without even trying. At the height of my feeling crappy, and at my most demanding, Sheri was walking into the kitchen, and I found myself saying, “Hey. I have influenza A!” Without turning around, she said, “Yeah, and when I had it, it was influenza A-plus… Can I get you a glass of water?”
Wow. Right-sized and an offer of refreshments. Sheri and I are in this fight together, and have been from the start. We have the support of our daughters, friends and an excellent medical team.
It kinda turns “one more thing” into an urban myth. There’s no such thing. With time to process, we can see that thought as the crap it truly is. The next thing is all there is. We just need to stay as ready for it as we can.
Poop happens, and sometimes it happens to you. That remains the truth of it, sisters and brothers. Poop happens and sometimes it happens to you.
Jim Arnold is a copy editor for the Kennebec Journal and Morning Sentinel.
Editor’s note: This column is an edited compilation of two columns Arnold wrote about his fight against cancer. To read both columns in their entirety, visit his blog, findingthepony.blogspot.com.