Yesterday, there was an article posted on the WBUR site under their This Moment in Cancer series that was picked up by NPR, titled, “After Cancer At 18, I Learned ‘Chemo Brain’ Can Last Long Past Chemo.”
This article lit a fire for me.
One of the struggles I’ve had for the past few years is balancing my desire to be fiercely independent with having someone who could and would want to take care of me. In all honesty, it would drive me up a wall to have someone that made all of my decisions for me and I just had to go along for the ride, so the question I need to answer is why do I think I want that at all.
In the past few years I’ve not been good about taking charge of some life and most health choices. Looking back, my diet’s been pretty abysmal. Same with exercise except that instead of abysmal, it’s been non-existent, and that’s for other reasons that no one else would understand so I won’t indulge that here. In general, I’ve allowed entirely too much “tomorrow’s another day” mentality to seep into my being rather than taking better control of my life and my choices. This is something I need to do some serious thinking about in terms of which areas I flip flop and why. Again, not really for this forum, but these are things that go into the conversation about what I’m willing to accept from chemo and its effects.
Cancer is something that happens to you. There are probably things we can do to prevent some types, but some of us are going to get it anyway. The best we can do is make sure we get our screenings done so that we catch it before it gets out of control and it’s treatable in less toxic and invasive ways. That was one of my mistakes and part of this weird mental space where I let tomorrow be another day to put my head in the sand and ignore the things I was supposed to be doing to take care of me. Even during these treatments, I find that I’m bargaining with myself about things that I need to be doing – I was up 5 or 6 times Friday night drinking water and going to the bathroom. AC chemo is a bladder irritant, so there isn’t much bargaining I can do with a full bladder, so I get up and do what’s necessary. Now, sitting on the couch, I’m bargaining with myself about whether I’m going to get up and get something else to drink. I have to stop doing this. I simply need to take better care of myself.
By the same token, I need to make an effort to better understand the treatment plan my oncologist has determined for me and then become a more active and vocal participant in what else I can be doing to ensure I don’t have lifelong effects from chemotherapy. There are different things they recommend for each type of chemo and the doctors and nurses will work with you to minimize and/or monitor the effects. For example, they take quarterly echocardiograms to ensure that there isn’t heart damage from any of the drug cocktails I’m on. Part of my blood work checks to see that I have good liver and kidney function before each treatment. For my upcoming Taxol, I will need to take some new supplements that will help prevent neuropathy, which is tingling and numbness in extremities.
This brings us back to chemo brain. When I asked at the beginning of my treatments if there were vitamins or supplements I should be taking, I was told to just take a multivitamin and it would be fine. I didn’t know of any other issues that I should be concerned about, so I went about my business and did 4 rounds of AC chemo. While I had some short term memory issues from my iron deficiency, I did notice that I was sometimes more foggy or couldn’t keep track of a list of simple items after my first chemo treatment. I didn’t know at the time that this would be a long term issue. After reading the article, I learned from other cancer survivors that they had issues with chemo brain for at least 5 and many for almost 10 years after their treatments stopped. I felt like nobody cared as long as it happened to people over 40. I took away that it was something that needed to be fixed because when it happens to someone who’s young, it’s a lot less okay an outcome than for someone my age. That’s not okay with me. I could see it better if I were in my 80s, but being only in my early 50s, that doesn’t fly. It also makes me wonder what the effects are when you have a family history of early onset Alzheimer’s and dementia. I’m now raising it as an outcome that we need to do what we can to prevent ahead of time and mitigate the long term effects. If it’s not okay that I come out of this with heart, liver or kidney issues, it shouldn’t be okay that survivors have to accept long term cognitive and memory issues because well… you’re still here aren’t you?
That’s not how I want to live.
There is way more to life than I’m standing here in front of you post-cancer.
I didn’t go through all of this to eek by and merely survive my treatment.
No. I did this so that I have another chance to live the one and only life I’ve got and live it well. No one should accept any less from our medical community.