Sunday, August 21, 2016

Sorry I haven't written lately

I hope you haven't been too concerned about my unwriting over the past few weeks.

The truth is, I've started numerous columns only to stop and put my head down on my desk, moving a clutter of papers I'm supposed to attend to to make room.

In early September, I'll mark three years of living with multiple myeloma. Three years is a long time to be tired, concerned, fearful, hopeful... a long time.

I am tired. At some point I have transitioned from the thought of dying from multiple myeloma to coming to grips with living with it. The difference is huge. Living with it means constant adjustments. I need to monitor my system every day. Is that a new pain, or the return of an old one? Is that twitch multiple myeloma or being age 67? What are these marks that keep appearing on my skin, seemingly out of nowhere?

And my wife Sheri has to endure the same sorts of things. She sees all these impacting my overall health and she can't help but worry about what's going on. Three years is a long time to watch someone you love get sicker and sicker.

Even my doctors are having to adjust my care plan as we go along. My light chain proteins (remember high numbers are bad) have continued to increase, albeit in relatively small amounts. We have brought in a powerful, somewhat new chemotherapy to add to the Revlimid mix I was already using. To say it has kicked my butt would be a vast understatement. The drug is called Ninlaro and it is a very small pill, but doubting its impact is impossible. I keep throwing up after taking it. I hate throwing up, but there you are.

We haven't really gotten a good read on my protein levels since I started taking it, but we have already reduced the dose because of how sick I was after taking it.

Humorous (I hope) aside: The first time I took it, our cat got out of the house for the first time ever. Yikes! I was, literally, in the middle of throwing up, when I had to join her efforts to get him back. So, there I was calling his name, throwing up on the neighbor's lawn, and then calling his name again. Repeat.

In the end, it seemed he really didn't want to be outside any more because he ran up on the porch and waited for Sheri to open the door to let him in. Hahaahhahahahaha. No. As the professional patient I have become, I finished throwing up outside- on our own lawn this time- and went back in the house.

Right now, my whole situation seems like a mess. We are using the chemotherapy to hammer away at the myeloma, but, given the nature of the beast, we are also hammering away at everything else. A couple of weeks ago, I came down with an infection and almost ended up in the hospital because of it. My white blood cells were so low, it seemed like the only thing to do was to put me in the hospital to monitor my counts and knock back the infection.

In the end, my doctor decided putting me in the hospital as a response to a possibly worsening infection didn't make a lot of sense. Let's face it? What is a hospital full of? Right. Sick people, many of whom have infections just looking for the opportunity to join with all the other things I'm currently fighting.

So, he ordered antibiotics and they seemed to do the job. Mind you, I still have a cough, but we're now calling that a summer cold.

So, I haven't written lately because I just haven't had the energy. The columns, for whatever reason are no longer being run in the local newspapers, so I don't have the added burden of trying to meet a deadline, which makes it easier to yield to the complete lethargy I feel virtually every day.

But here's the thing... It's not my ego speaking when I say that I know you worry about my health. When I don't let you know what's going on, how can you help but think the worst? And while it's true things have not been going well, there is certainly a big “worst” hanging around.

So, now that I have begun again, I will try to keep you up to date as I have done over the past three years. Who knows? I may even return to my old snarky, sarcastic self. Hey, it could happen.

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