I should've written about this a while ago, but I never got the chance. Now that my hair is back to the length it was before I got sick, I was pretty convinced that the only physical aftermath would be the tiny scar on my chest from where my central line was. That is proving to be entirely untrue.
A couple weeks ago, I went to one of the Cancer Center lectures expecting to hear someone talk about research similar to mine: a certain type of cancer, a certain gene, a certain drug, basic stuff like that. Plus, the guy was from Sloan Kettering, so I thought that'd be cool. Instead, the talk was about survivorship and long-term effects of cancer treatment. The first half of the talk had mostly to do with radiation therapy and a bunch of breast cancer drugs I had never even heard of, but then he got to cardiotoxicity in pediatric cancer patients. His first slide said, "Does cardiotoxicity actually exist?" and he said, "To any of you pediatric oncologists sitting here, you're probably laughing because we know cardiotoxicity is ABSOLUTELY a real thing." And then the PTSD kicked in, and I left.
To clarify, I was not blindsided by this. I already knew that high doses of daunorubicin can cause heart problems years down the road, which is why I have to get an echocardiogram every two years. But to hear the guy practically laugh at the notion that it doesn't exist was, well, disheartening (pun intended). I had gallons of that neon orange crap pumped into me for days at a time, and it's literally giving me chest pains thinking about it. I kind of wish I didn't know as much about these drugs as I do, because I'd really love to live in a happy little "ignorance is bliss" world and not be worried that my heart is going to start failing in 10 years.
Unfortunately (fortunately?), I have more pressing issues to deal with in terms of long-term side-effects. I think I briefly mentioned in one of my posts when I first came back to school that I was forgetting everyone's names and was just generally kind of forgetful. For any of you who knew me well before I got sick, that is extremely unlike me. I used to have a near-photographic memory, particularly for phone numbers, birthdays, addresses, and other data-like information. And I remembered every single person I ever met, their first and last names, probably their middle name, and probably their Social Security number.
A few weeks ago, my roommate's friend came to visit, and he had visited multiple times before. When he got there, I couldn't remember his name. My roommate had even made references to him earlier that day, and hours later, I couldn't remember the name of this person I'd met 3 or 4 times. This doesn't happen to me. And when it does, it's not frustrating, it's scary. A handful of times this summer, I'd start doing something simple like making lunch, walk away for a minute, and then leave a half-made sandwich on the counter for 2 hours because I forgot about it.
At first, I was like, "Well, these are just stupid, annoying memory lapses that I'll just have to get used to." And then school happened. I have to start studying for my exams almost 3 weeks in advance because it takes me so long to read and process information, and it takes even longer to commit the information to memory, if I can even do that much. I used to be able to read something once and remember it for months; now I lose it in a few hours. I also don't speak and write as fluently as I did before. I get stuck on words that I can't think of, or I use words incorrectly, and it's both aggravating and embarrassing when I'm trying to communicate with people and not sound like an idiot.
I'm never one to make excuses for myself, which is why it's taken me 2 1/2 years post-treatment to recognize that something might actually be wrong. And honestly, I think it'd be even harder to believe that my treatment didn't have any cognitive side effects; I had chemotherapy injected directly into my spinal fluid for 8 months. MY SPINAL FLUID. That, along with high-dose chemotherapy, is listed as a risk factor for post-chemotherapy cognitive impairment, and considering my doctors referred to my treatment as the "highest dose available," I think that counts.
I briefly asked my doctor about this last year, and she just shrugged and said it'll probably go away soon, which is why I never thought much of it. But I also realized that as a pediatric oncologist, she probably doesn't have too many 5-year-olds coming in and complaining that their memories just aren't what they used to be. That being said, I think it's really important that they know this is a real problem, and then maybe something could be done in the future to prevent or alleviate this in older patients like me.
Believe me, I know that there was no alternative, and I'd much rather have occasional memory lapses than be dead, but this freaking sucks. I've read that these symptoms can last 4-10 years in survivors, which is basically the entire length of time that I'll be in school. I'm going to have to start doing brain exercises like a dementia patient in a sad attempt to regain my brain strength.
I just rambled for a really long time about this. I'm not entirely sure why. Part of me just likes to rant about my feelings to whomever will listen. I think it's also kind of a plea for people to be patient with me; I'm thoroughly embarrassed by how forgetful I've become, and I want you all to know that I honestly can't help it. And finally, I want any survivors reading this to know that if you sometimes find your glasses in your sock drawer, you are not alone.
On a less serious note about physical aftermath, about 2 years ago, the doctors severely irritated a nerve in my back during one of my bone marrow biopsies, and now whenever the weather suddenly shifts to being extremely cold ('sup Rochester), I get an excruciating pain in my lower back. It's like I have ESPN or something; my back can always tell when it's gonna snow...
