Thursday, May 1, 2014

Nobody doesn't love apheresis pieces

So, we've been at our friends' home just outside of Boston for a few days now. I'm not going to lie- a couple of those were among the worst since my cancer was diagnosed. The combination of harsh pain, stress, fatigue, fear of the unknown and Boston drivers communicating through some sort of car-horn code that was impossible for non-natives to understand, proved to be too much and I started acting like a person I did not recognize; not did I want to continue to be.

Fortunately, it only lasted a day, and what passes for normal around here these days quickly returned.

It pretty much began when we walked into the home friends were letting us use during our time here. The medicine that I had been taking to stimulate stem cell growth had been causing horrific pain in my spine and ribs all day and there was no real way to get any relief. It was... unpleasant.

So, we walked into this beautiful home that had been so graciously loaned to us, took one look around at all the lovely things that had made this a home, and... I promptly burst into tears. Not little ones, either. We're talking sobs. I'm okay with crying, but the feelings around it sucked.

And that was just the beginning. I thought of our friends' kindness and the support we have received from so many people- sobs. I thought of all that we had gone through and how much more we still had to face- sobs. I thought about the toll this was taking on my wife- sobs. There was a lot more sobbing, but the one thing that came as a complete surprise was how much I missed our home in China (Maine).

Since we left Scotland, it has been hard for me to consider anyplace I lived as a home; not like most people seem to, anyway. When we first came arrived in this country, we lived in nine places in four years, and continued to move every couple of years after that. It was so bad- and as God is my witness, this is true- that during my freshman year in college, my parents moved and didn't tell me! Seriously. I wouldn't kid about a thing like that; well, I would, but I'm not.

I managed to get a ride with someone who was headed that way, so I figured I would surprise my parents. Surprise! I arrived at what I thought was home at 2 am and woke a stranger who did eventually open the door. Surprise! He knew where they had gone, and I quickly tracked them down. Seems they were going to get around to telling me they'd moved. Sure.

With a history like that, then, it truly shocked me to react as I did. We were cut off from our comfort, our friends, from everything that had remained familiar to us in this strange new place called called cancer patient. It probably wouldn't have been so bad if we'd had any idea what we were about to face and where we were about to face it. We knew I was having a Hickman line put in and we were going to be harvesting sea monkeys, but what did that actually entail? No idea.

Putting the Hickman line in involved a surgical procedure to put, what feels to me, like a big, honking thing with tubes coming out of it, into my chest to be used to insert and extract fluids as necessary from my body for the foreseeable future. Okay, next.

The procedure for harvesting stem cells is actually called apheresis. I was hooked up to a pretty cool looking machine and my blood was passed through it, stem cells removed, and then my blood was put back. As we know, my medical knowledge is pretty much limited to what I learned from Marcus Welby, MD, back in the 70s. So once again, I figured I would feel the blood leaving and returning. Pretty cool, right? Nah. I felt nothing. I know, when's he going to learn, right?

Well, that's now quite right. I felt incredibly bored. I had to stay attached to the machine for seven hours. No walking around, no going to the bathroom. Nothing. Fortunately, the person who was conducting the process was wonderful. No surprise he was from Maine. He and Sheri really hit it off and it was nice to see Sheri being able to be comforted. We have a great picture of Sheri sleeping in a chair, covered with a blanket he had gotten and put over her. I'll bet that isn't in the “procedure” book, but it was an incredibly kind, thoughtful thing to do.

We were scheduled for up to four days for harvesting, but were done in two. We needed eight million cells, and ended up with 11.6 million by the end of the second day. Everybody was happy! It gives us two days to actually take our first deep breath in a long time. We have nothing to do and nowhere to be. What???? I hope we remember how to do that.

Every single thing that has been done to help fight my multiple myeloma and my chromosome deletion has brought sparkling results. I'll say again: I have no doubt that your prayers and best wishes have played a large part in those outcomes. I hope to be in touch one more time before I go under the knife...Oh. Wait a minute. There is no under the knife. My stem cells are reintroduced through an IV, presumably using my honking, big chest piece. Nevermind.

Thank You note: We wanted to thank all of you who have shared and/or donated to the Go Fund Me site our daughters, Alison, Jennifer and Kristie, have established. This week has also reminded Sheri and me how important your kind words, prayers and wishes have been . We couldn't have done this without you. If you would like to see photos of us and our family- and maybe even make a donation :)- visit, and enter my name or Finding the Pony in the search box.

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.”