Wednesday, April 2, 2014

Ch-ch-ch-changes

I was walking from the kitchen to the living room the other night when I was struck with the thought:
“I will never go back to being the person I was before I was diagnosed with cancer.”

I'm not saying it's a great revelation. It's certainly no “Eureka!,” as Archimedes is supposed to have
yelled upon discovering the principal of displacement. It probably isn't even as grand as finding out that Doublemint gum is “Two... (clack) Two... (clack) two mints in one.”

Still, it gave me cause to pause. Too many things have happened in the past seven months for me to
have any chance at being the person formerly known as Jim Arnold. Well the name's the same, but you know what I mean.

First off- being struck with multiple myeloma. There seemed to be no rhyme or reason why it  happened. Maybe if I had smoked like my father and my sister Moira, developing lung cancer, while
still a shock, would have been not completely unexpected. Or if I had been a sun worshiper who
worked on my tan until my skin became a color you normally didn't find in nature, and I developed
skin cancer...

But, no, my cancer I have is rare, incurable, and only about 100,000 people in the country have it.

Then, on traveling to Boston to meet with my oncologist there, I find out I also have an even rarer
condition: a genetic disorder called chromosome deletion 17p. Normally a person's chromosome 17 has two bits sticking out of it, while mine has only one bit sticking out. I hope that I doesn't sound like a kid trying to answer a question from his biology teacher when he hasn't read the appropriate chapter. It's just how I've come to think of it. Suffice to say that the damage to the chromosome is serious and will reduce the effectiveness of my stem cell transplant.

I'm sure you understand when I say being struck with two rare condition changes a person. I'm certainly not as confident about my health after my system has delivered two huge surprises and that has made me jumpy around doctors. As I was completing my radiation treatment today, I learned my
radiology oncologist wanted to see me. Ro ro; that was something new. I immediately figured he
wanted to tell me my radiation treatments had gone horribly wrong and ask if, you know, I'd ever seen that movie about the 50-foot tall man. In actual fact, he just wanted to assure me everything looked good and I should be okay to have my transplant on schedule.

There have also been plenty of somewhat superficial changes. I can't carry as many grocery bags into the house at one time because I just don't have the strength There are days when I cannot drive myself
places because fatigue takes away the focus I need to safely drive. Since I broke my right collarbone, I'm not supposed to lift anything over two pounds with my right hand and arm. Normally, I'd blow that one off, but I have my own, personal Nurse Ratched watching and making sure I don't do something stupid... something else stupid. When it comes to my health, Sheri lets nothing slide.

I answer my phone now, when I can. That's big change for me. After working in customer service at a
credit card company for years, the last thing I wanted to do when I got home was take phone calls. So I didn't.

Now most of the calls are from the clinic, or the hospital, or the hospital in Boston, or one of our
medical insurance carriers, and on and on and on. For example, the phone rang at 8:01 am this
morning. It was my hospital here changing the time of my bone marrow biopsy the next day. I also got dietary instructions and directions to where the biopsy would be performed and what to do when I got there.

As the date of the transplant gets closer (May 2), things are really picking up speed. In addition to the
bone marrow biopsy, this week I had two radiation treatments, my regular chemotherapy, a bone survey (involving 21 x-rays) and another, solo, x-ray and an echocardiogram. All the results will be shipped to Boston to be reviewed with us when we go there April 9 for a number of review sessions. I get the feeling, since we meet with the oncologist last, that the idea is to be sure I'm in good shape, physically and mentally, to proceed with the transplant.

So, with Sheri's help, I take care of these things. That's good, right? But I used to love being
irresponsible. Not all the time, but once in a while. Seriously. Knowing the right thing to do but
refusing to do it? What's not to love about that?

When people ask me how many grandchildren I have, I usually get a hundred on that one- five. Names too- Jacob, Matthew, Emma, Sam, Josh. That's five, right? But ask me their ages and you get a lot of -ish. And the dates of their birthdays? Mnemonics help with Jacob, Matthew and Sam. Emma and Josh? -Ish. But we love them a lot and I always knew we would be proud to see them graduate from high school and move on to whatever was next. Now, frankly, I wonder if I will see any of their
graduations, except Jacob's which will be next year.

Please don't consider that a morbid thought, or even sad. It's part of what has changed me. Hundreds
and hundreds of cancer-related thoughts whirl around in my brain, edging out many other things that
used to share the ride. I don't spend any great amount of time thinking about any of them, positive or not. That just happens to be the one that popped out this time. It could just as easily have been: Sheri has never seen me without a beard and it seems the pre-transplant chemo will take care of that. If she looks at my face, she'll notice. What will she think? Ditto anyone in Maine who knows me. Is it sick to think that I'll look so crappy otherwise that she might not notice? Hey, a fella can hope, right?

I think the changes in me generally come down to the difference between being Jim Arnold, person,
and the person formerly known as Jim Arnold now James Arnold, cancer patient. Being the cancer
patient has let me change some to the things I didn't much care for in being Jim Arnold. And yet having been Jim Arnold, person, has added strength to my journey that wouldn't have been possible if I didn't have him to draw from.

And despite all the changes, I love the fact that the amalgamated me still loves with all his heart, finds a way to laugh through the darkest times, cries at adorable videos on YouTube, uses optimism as a stick to beat on cancer's crap, and knows enough to value the people around him who refuse to let him reject their love and support.
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.