We are now talking about putting me on Ritalin. The “chemo fog” you hear people talking about has turned out, in my case, to be very real. I am not playing with a full deck. Light’s on, but nobody’s home. A few fries short of a Happy Meal. A lost ball in high weeds.
I forgot to go to a meeting yesterday. I lost my keys at church…for the second time this week. I had to throw out most of a bag of groceries because I forgot to take them in the house and they sat in my van all day in the sun. And although I used to be the Queen of Multitasking, I really have to focus on one thing at a time now, or I get all confused and cranky. For example, let’s say I’m trying to type an email and some hapless child or husband wanders through asking me what soccer field we will be playing on today or what we’re having for dinner, and I lose my place and have to start over and I snap his head off. Everyone is bewildered. I used to be able to conduct four conversations at once. Now I just forget what I was talking about with everyone, and then I get growly.
There are a bunch of reasons the brain is giving up on me. First, the chemo drugs are really toxic, and they are killing my brain cells. Second, I am getting much less sleep than I need, because the steroids and such keep me wired a lot of the time. I get up at 3:30am some days, ready to go, and you never get that sleep time back. And, third, the drugs have sent me over the cliff into menopause, in a pretty sudden and graphic way. A triple whammy.
When I first met my oncologist, the good Dr. Fred Smith, he said he was sorry, but I was going to lose my hair, and there was nothing he could do about that. Then he asked me what else was worrying me about my treatment? And I told him I truly didn’t mind being bald for months, or even being nauseous for months, if it came to that. I told him I wanted to hang onto my brain cells.
Six years ago, my oldest brother was diagnosed with colon cancer. He went through hell. He had surgery, chemo, and debilitating rounds of radiation. He is now cancer-free. But the whole thing took a toll on his brain. He was forced to retire from his job of many years as a railroad engineer, because he truly wasn’t sharp enough to be trusted with a train full of people anymore. And you could tell, when you talked to him, that some of his sharpness was just gone. Now, after a couple of years, some of his old self has come back, but I think he would be the first to tell you he never got back to normal.
This is what I was terrified of, and it is what is happening. I am losing brain cells left and right, and I am afraid they will never come back. And unlike my hair, for me, my brain is near the core of my identity. A “smart person” is who I am. Really, I used to be a smart person, before I had children! I got straight A’s in college, and I was taking classes like Physics and Greek. Hell, I was a Rhodes Scholar. In sharp contrast, I am now a complete space cadet. I read things wrong. I forget entire conversations. I write stuff down, and I lose the paper I wrote it on. I still have interesting ideas, but they are not organized in any meaningful way. I’ll get an idea for a painting, or a piece of jewelry I’m working on, and if I don’t write it down immediately it’s gone. Gone. File not found.
This is bothering me much, much more than the baldness or even the idea of losing a breast. They can make me a new breast, a nicer, perkier one. We have the technology…but the brain cells, they don’t come back. Friends who have been through this tell me, no, they never do come back, not like they were.
Now, Dr. Smith says not to panic. He says that even in the last couple of years they’ve been researching this issue of “chemo fog.” They’ve decided it’s a very real problem. (Note to Medical Science: “Duh!”) There is research now that shows Ritalin might be very helpful to a person like me, at least for brain-organizing executive functions. But I have my doubts. There are trade-offs. How many psycho-tropic drugs can a person take at once? Do I take a sleeping pill, and hope that getting some sleep helps, or do I go for the Ritalin? Do I try to do both? If I do, do I become a drugged-up sleepwalker? Generally speaking, I don’t want to be any more stoned than I already am. And if the steroids have made me a little wacky, at least that is a fun, interesting kind of a kind of wackiness. It’s a little edgy. I’m having some vivid dreams, some weird energy. Sort of like I imagined what bipolar disorder must be like. It’s very interesting from a scientific and artistic perspective. Not everyone gets to be temporarily mentally ill. It’s very, very eye-opening. I get now why the Beatles and others found creative inspiration from taking LSD and such. If I have to take these badass drugs in the name of saving my life, maybe I should just buckle my seat belt and enjoy the ride? If I knew I could get off the roller coaster at some point, it would be easier to decide.
Katie, you aren't Herman and he wasn't you—but our experience with Ritalin was that a little went a long way! It ramped him up, which he enjoyed, but he was often over-stimulated, like a sugared-up toddler: he bounced from project to project, doing some astonishing things like deleting everything on his phone and making endless charts for all kinds of odd projects. He still had chemo-brain, he was just more excited about it. At a couple of points, I had to sedate him so he could sleep.
ReplyDeleteI strongly recommend that your husband or another trusted friend be around when you are taking it, at least until all the effects are known. Your system is a lot weaker than an adult with ADHD taking it, and your liver is weirded out with everything it is being asked to metabolize.
I say this not to worry you or say you should not try it, but just to be careful until you know what it does to you.