Saturday, June 25, 2016

I left the room and the next thing I know ...

First, let's see if you've been paying attention. Last time I wrote about Kappa and Lambda light chain proteins.

At my clinic visit this week, I found out that the light chains are going back up; this time from 18 point something to 21 point something else. Now, light chain proteins going up are a) Good; b) Bad); c) What's a light chain protein?; d) I went out with a Kappa Lambda in college.

I know most of you got it right. The number going up is bad, especially since the medical regimen I'm on right now is making me feel poorly, as my Aunt Jessie used to say. I mean, it's one thing to feel tired and kinda nauseous all the time when you are having some success, but another thing entirely when what you're doing isn't even working.

So, we had something of a group meeting about it when we were at the clinic. Interestingly enough, I missed it. Sheri had arranged to talk to our oncologist in Augusta alone for a few minutes at the end of our session. During the visit, we had discussed a number of options and agreed our doctor would contact the Boston oncologist who is really the big dog that oversees my care.

Well, I left so Sheri and the doctor could talk. Never being one to let things wait, though, after I had gone out to the car to sit and wait, our Augusta doc got on the phone with our Boston doc and the two of them, and Sheri, were able to discuss what to do next.

Do you think I should have felt indignant at having been left out? Remember, these are the three people in my life who know as much, and in some cases way more, about my multiple myeloma than I do. So, why would I feel indignant? I was just impressed that no time was being wasted and we had a solution in place while I was sitting sipping Sheri's cold coffee in the car while working on lies to tell her about how I actually hadn't been drinking her coffee. She does not like ANYONE messing with her beverages.

So, here's where we are now. I'll continue to take the chemo and dexamethasone as I have been, but we are going to add another piece to the puzzle: Velcade, which is the first therapeutic proteasome inhibitor to have been tested on humans, an explanation which certainly comes from the “aren't you glad you asked” department.

I have actually been treated with Velcade previously. Before my stem cell transplant, it was added to the mix I was taking at the time. At that time I took it through an IV, but this time it is going to be in some sort of capsule form. I prefer the capsule, mostly because an IV means sitting in the treatment chair for about two hours, between getting it set up, getting me set up, administering the Velcade and detaching after we're done. The other way, I just take a pill, Jill, and I'm done.

I won't start the new protocol for another week, so we'll see how it goes.

In the midst of all this, I found myself thinking about my daughters, Jennifer, 47, and Alison, 44. They live quite a distance from here, so most communication is by Facebook, email, or phone.

When I first found out I had cancer, one of the tougher things to be done was to get on the phone and tell the girls (don't care how old they are, girls is what they will always be to me) to tell them. At that point, I said I would never evade the truth (also known as lying) as far as my health goes. Good or bad, I would let them know.

And that's what's happened, But Sheri noticed that as I was avoiding whining and complaining about my health, I wasn't painting a totally accurate picture for Jennifer and Alison.

I thought about that, and saw she was right, as she so often is. So, when we talked on Father's Day, I took the time to tell them that I hadn't been feeling good and that I was tired all the time. I also broached the subject about quality of life. Look, I'm not on death's door by any means, but I do have to make decisions like the one we just made about the latest treatment plan.

We had a really good conversation and I think they probably have a better handle on how I'm doing: good, but not great.

So, now we all head into this new round of treatment aware of the situation that we are fighting and what to look for in the results. Remember... light chain proteins up... what is it brothers and sisters? That's right, bad. Now you have all you need to know to track our progress. Good job.

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