I find it odd that I’ve been so fortunate up until this point to not really have to make any decisions regarding my health. My metastisis was textbook and there was always a pretty clear next step without my needing to add much, if any, input into it. The only big choice I made up until now was whether or not to be involved in clinical trials, but that almost seemed like a no brainer. I trust my oncologist completely and would proceed medically with pretty much whatever he thought was best.
So here’s my dilemma now. Both my oncologist and neurologist are asking me to make what I feel are big decisions regarding my health and treatment. ME?! Because suddenly a degree in anthropology and psychology makes me qualified for this? Or is it my aptitude at messing just about everything up that made them think this was a great idea? To quote my two year old daughter when I suggest just about anything, “That’s not a great idea!”
I guess it’s a good thing, but I have truly been relieved up until this point that I never had to make any tough decisions. You see, I’m what they call in the medical world “wishy washy”. To the point where I have little to no confidence in my decisions if they’re important ones.
The “problem”: my body has shown a complete response to the Keytruda. Complete! That’s awesome and definitely something I’m glad about and grateful for. And my oncologist gave me a few options: I could keep getting it every 3 weeks, I could space it out, or I could stop it completely. There is not one clear option that’s better than the others. The drug is so new that there is just no way to know what the most effective route would be. It was obvious as I was probing Dr. A to make the decision for me (because that’s how I roll), that that was not going to happen. I gotta figure this out.
Part of me says, “you’ve been getting it every three weeks for over a year now. It’s working, why mess that up?”. Another part says, “This stuff has not been around long and there is no data on how long it stays in your system or what long term side effects could be looming if it keeps getting pumped into you like this. Spacing it out seems maybe safer?”. And then of course the last part is saying, “You’re doing fine. You could get out of this now while you’re ahead. There’s no proof that staying on it prevents recurrance. Think of all the money you’ll save. And this may help with the fatigue and headaches.” There are actually other considerations too, but that would take forever to explain. Basically, there’s not a “right” answer.
And then my neurologist. Super nice guy, but come on! Make some decisions for me, man! Somehow in my appointment last Friday it came up that my seizure meds are way expensive. Like, $400 for three months’ worth expensive. So he said I could switch to something cheaper that may also help with the headaches I’ve been having. But there’s no guarantee they’ll suppress my seizures like the Keppra does. He says it’s my decision. Well of course it is! I’ll say completely honestly, I very much fear having another seizure. There is just nothing more terrifying. There is still a tumor in my brain, but even if it’s inactive it still causes these seizures. Grand mal seizures. I actually don’t remember most of this time last year because of them. It’s like Will Smith and Tommy Lee Jones showed up with those memory erasing devices from Men in Black. It’s all just gone.
With this one, I decided to go forth with the change in drugs. I’m not actually sure why, I guess it was just getting uncomfortable sitting on a fence. But of course I’m still second guessing that decision. I haven’t begun the switch over process yet (takes a few months) but I do have the new drugs in my possession. Baby steps.
There’s a chance it won’t suppress my seizures, but there’s a chance it will. There’s a chance I could have recurrance if I stop the chemo, but there’s a chance if I continue it too. There’s a chance that increased exposure to Keytruda could cause toxicity. But it seems to stay in your system so long that there’s a possibility for that too even if I stop now. I thrive on clear cut answers so this has been bugging me for a few weeks now. And although I’ve sought, I have no clear leading from the Lord at this point. But, if I’m being honest, it’s been less seeking and more just waiting for Him to make it obvious.
Ultimately, I think a lot of this comes down to being afraid of making the wrong decision. I don’t want to look back and say, “If only I had…” or “This may not have happened if I would have just…” I know I shouldn’t think like that, but just as I had come to peace with dying around this time last year, now I’m back to a comfortable, busy life where I can take care of my family again. And I really don’t want to be responsible for making a decision that brings that to a screeching halt.
I think the correct term for all of this is “crapchute”.
But I’ll admit, it was nice to hear my oncologist talking about “long term side effects”. That really has a nice ring to it…