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

Monday, September 12, 2016

OK. So what we need is a different new plan

Yes. I did ask for a plan. Yes. I did say that being able to fight back was better than having to sit and have cancer knock me about. Yes. I did say Sheri and I would be ready to go and tackle my multiple myeloma again, if only we had a plan.

Well. It would seem that there are plans and then there are... plans. I figured our plan would be more of the same. I thought we'd take the medicines we've been using and tweak them into a different order and strength. After all, that's what we've been doing.

I wasn't prepared to have to toss aside what we've been doing, almost completely, and head down a different road; in this case, the road less taken. The treatment that makes up our new plan is really new and pretty cutting edge. Obviously, that's a good thing, but the process is very involved and means spending quite a bit of time in the treatment chair.

I admit that I've been spoiled. Since my stem cell transplant, I've been able to take my chemo and other medicines in pill form, at home. When they made me sick, I was right there ready to lie down at any time and throw up in bucket of my own choosing.

In the immortal words of the not-so-immortal Mary Hopkin, “Those were the days my friend, we thought they'd never end.” Yeah, well...

The new plan calls for, six (maybe five) medicines to be deployed before I take the chemo itself, and more steroids for two days after. The first course needs to be given over two days; about five hours the first day and two to three the second. The whole process includes a high volume of steroids which WE KNOW make me very uncomfortable, in fact borderline crazy. While I realize crazy is not a medical description, it is certainly less offensive than bats**t which probably better describes what happens when I take minor doses of steroids, let alone the copious amounts I have to take with this new plan.

I have to take the majority of the medicines while in the clinic because of the worries over side effects. The main concern is something called infusion reaction; that is, reacting badly at the site of, and because of, the infusion itself. I have had an initial bad reaction to everything I've been given through this fight. I think being in the clinic at time of insertion is just what the doctor ordered.

I have to say, this is the most nervous I have been in a long, long time. While I know a lot about the treatment, I don't really know what it is all going to mean to me. Also, it is a whole different approach. Previous treatments I've endured have been aimed at attacking existing cancer cells. This new one seems to be inserted at the DNA level to boost your own immunize system to put up the fight. Now, is it just mean, or does that sound worrisome to you?

In the somewhat limited use the drug has had, it seems to be very successful, so we've got that going for us, which is nice.

But, here is a partial description of the drug's mechanism of action: “This is an IgG1k human monoclonal antibody produced in a Chinese hamster ovary cell line.” Take a second and think about that. Not just a hamster, but a Chinese hamster. Maybe Chinese hamster is like a “wink wink” so that competing companies are thrown off. Maybe it actually means a hamster taken from Bob's (not his real name) Pet Store.

I have a tremendous amount of respect for the people who work so hard in cancer research. They are fighting to save my life. There aren't words, not in my book anyway, to say how much that means to me. But at what point do you look around the lab and say, “Hey. That Chinese hamster in the corner! Let's give her a go?”

I expect the treatment to begin this week, although it may be hard to put two consecutive days together, we'll have to see. But this whole treatment alternative has me on edge, thrown for a loop and any other similar cliches you wish to bring to the game.

I will say this, and it absolutely true... you can look it up... On top of all this, I have to at least save some concern for the fact that game wardens have been trying to catch a bear (brown, I hope) that has been roaming our town for over two months. How's that for a line of concern: a Chinese hamster to a Maine brown bear? You gotta laugh.

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