Saturday, September 24, 2016

A long day's journey into night, three times, so far


This new treatment is a doozy. I mean, brothers and sisters, if this is going into the Book of the Mainenites, it's going to have its own chapter... maybe two.

It is pretty involved and new enough that even the nurses seem to be following the same sheet that we have at home. And it takes soooooo long.

It begins at home, early in the morning, when I have to take a large doze of steroids before we leave for the clinic. This week I actually forgot. Seriously. I'd called the clinic the day before to confirm that I could take them at home, and then... I forgot. Yikes. Fortunately, there was no big issue around that because I could take them when I got there, which I did. Good boy.

Then, beginning about 8:15 am, I have three medicines to be ingested an hour before we begin the treatment itself. So, we take those, and wait. Then, there are three more things to be taken before the actual chemo is begun. So, we do that.

Then we begin. We know it is going to take a long time because the insertion rate starts really low and then builds up throughout the day. Still, we're going, we're underway. But then, we're not.

We have to stop a couple of hours into treatment to add some more preventative medicines to the process. See, all of these things we're doing beforehand and now, during, are to cut down on the possibility of negative reaction to the chemo. And these are real concerns for truly bad things to happen. So, I'm all for using all the time we need and all the care we need to take.

Then eight to eight and a half hours after we've begun, we go home. And in the Book of Mainenites it reads, “And the man and and his wife were so glad. They would have looked for a fatted farm animal to sacrifice but that sort of thing had gone out of style hundreds of years before so they settled for being really nice to their cat.”

The days end mercifully soon after that because Sheri and I are both in my bed 8 pm. And sound asleep. And we do sleep through the night, except for a couple of cat breaks where Wolfie simply has to have some attention. He's been alone all day and has tried to let us be, but he just can't take it any more. So, we give him his attention and all three of us go back to sleep until a more normal waking time.

The first treatment took two days because of the sheer volume of chemo to be infused. We are now down to one day, and by the next couple of treatments, provided I continue to tolerate the chemo as well as I have been, we will be able to get it done much quicker, though it will still take three of four hours, I think.

The treatment is so new, so cutting edge, that we get the feeling that the medical staff and Sheri and I are going through it together. And we know there is no group of medical people we would rather be doing this with than the ones we have. There is not a large accumulation of anecdotal material and often we simply aren't sure of what's what. It's good to know that what we're going through is going to be of true assistance to people who come after us and have to take the same treatment. And we're doing pretty well throughout it all anyway.

At least at this point, I'm probably tolerating this better than anything else I've been taking. The fatigue I feel is extreme, but other than that... There is nausea and quite a bit of bone pain. But those are things I've been living with since the beginning. This is just a little bit extra.

There is something, though, that I haven't been able to put my finger on, that is, until I woke up this morning. When people ask me how I'm doing, I tell them what I've just told you. But that hasn't quite felt on the mark. I do feel much better than with other treatments, but... This morning I realized: my entire system is fighting multiple battles with itself in the common goal of beating this cancer. I am at ground zero in this war, and that's never a very comfortable place to be. I may have summed it up best when I said to Sheri, “I just don't want to feel like this.”

And it's as simple as that. It's not an especially bad feeling though it certainly doesn't feel good. But, turning again to the Book of the Mainenites, it's just time to do some smiting and being thankful. And maybe there should be a bit about pulling on my big boy pants. Not very Biblical, I know. We'll have to see.

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