On the road and treatment updates

I can't remember if I've posted yet about my maintenance chemo plan, so if I have, I'm repeating myself. Sorry! We've always had a maintenance chemo plan in the works because I have such a high chance of relapsing again. Although we hope that all the cancer cells are gone, there is no way to know how many undetectable cells might be left, and past experience (meaning the fact that I have relapsed a few times before) tells us that they are probably still there. And of course we found out in April that yes, there are in fact some bad boys still hanging around, when leukemia showed up in my central nervous system (CNS), where it had never been before. So my doctor decided it was time to put the plan into action before the leukemia started growing anywhere else.

The maintenance plan has two arms. First is the CNS leukemia treatment arm, which is an injection of a long acting version of a drug I've had many times before, ara-C, into my spinal fluid. Yes, they stick a big needle into the sac of fluid at the base of my spinal cord. Luckily I get this done under sedation so I have no idea what's going on! That's how I like it. Chemotherapy doesn't cross the blood/brain barrier very well so a direct injection into the spinal cord is the most effective way to take care of CNS involvement. I've been getting this treatment every two weeks since the beginning of May. After my treatment on July 13th, provided I am negative for CNS leukemia, we'll switch to treatment every three or four weeks and gradually space them further and further apart. This will continue for a year maybe?

The second arm is geared towards the rest of the leukemia that might be hanging out anywhere in the rest of my body. I'm getting a drug called azacitidine (brand name Vidaza), which I get for five days in a row one week a month. The infusion of the drug itself only takes ten minutes, but of course I have to get my blood drawn, wait for the results, wait to be called back to infusion, wait for the drug to come up from pharmacy.... it ends up being a two to three hour thing. I always bring a book or Sudoku or crochet or something else to occupy myself, but even so the waiting is ridiculous! The Vidaza infusions will probably also last for about a year and we'll be gradually increasing the dose to kill more cancer cells.

Luckily these drugs haven't affected me too much. They're quite mild, actually. I only had a little big of nausea after my first round of the intrathecal chemo (the spinal chemo), and on weeks when I get both the intrathecal chemo and Vidaza I'm more tired than usual, but otherwise I'm eating and doing things and feeling pretty good. My blood counts drop a little bit and my liver enzymes go up a little but that is to be expected.

My biggest problem has been with concentration. On weeks when I get chemo I feel completely unable to focus and very ADD. I can't sit still, I can't concentrate very well on one-on-one conversations, I get bored easily and need new activities all the time. It lasts for about 5 days. I had been blaming this side effect on the intrathecal chemo because it's a direct drug injection into the CNS, it seems like a big "no duh" that it would affect brain function and concentration. This week though I've felt pretty normal! So either my brain is getting stronger and conquering the nasty chemo, or the real problem is the Vidaza, or the combination of the Vidaza and the ara-C. I'll have to see what happens in a couple of weeks when I get both of them. "Chemo brain" - the difficulty concentrating, difficulty analyzing, difficulty with memory, etc - is a well documented side effect of chemotherapy and for some people can last a very long time or even be permanent.

This weekend I'm heading out to San Francisco to visit Theresa. My parents are coming along too because I'm not sure how much she'll feel like having visitors and if she's not up for seeing me I'll at least have people to do some sight seeing with! I haven't been to San Francisco before so it's kind of exciting. We're leaving tomorrow and coming back Sunday morning, so it's going to be a very quick trip and there definitely won't be much time to play tourist, but it's fun to have a little getaway!

Have a good weekend everyone!