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...
Friday, November 28, 2014
Wednesday, July 23, 2014
Day 1048 - I Just Have a Lot of Feelings
Man oh man oh man.
I really hope my PI never reads these posts, otherwise he's going to think he's subjecting me to extreme amounts of emotional stress. But that's what I get for voluntarily joining a lab that exists solely because so many people die from AML.
I went into my PI's office yesterday to talk about my project, and another doctor came in while I was there to ask him about some patients. They discussed a very sick NPM1-mutated person. They talked about how GCSF can be dangerous for someone with AML during induction. There were mentions of the infamous ANC and platelet counts and how high they have to be to have procedures done. And I felt the color drain from my face at the phrase, "If they survive." When they were done, the other doctor walked out, and my PI looked at me and said, "It's always weird having these conversations in front of you."
I stiffly smiled and nodded, and we continued with our conversation, but I could feel my face getting hot. He asked me if I was okay, and I insisted that I was, but the tears could not be fought. I felt like such an idiot. He apologized and said he needed to be more sensitive to the fact that this kind of stuff bothers me, but gimme a break; I should be able to accept the fact that people die of AML without having an emotional breakdown. But apparently, I can't. I almost laughed when he said I "clearly still have a lot of feelings about this," because this is actually the SECOND time I've starting crying in his office. Yeah, I have a lot of feelings. Who knew? I didn't.
I was pretty shaken up for the rest of the day. I couldn't stop thinking about everything that was said in that conversation and what exactly made me react that way. After talking to myself for a little bit, this is what I think: I'm starting to experience all the fear I should've experienced back on Day 1 when I had the nerve to say, "I'm truly and honestly not scared at all." At the time, that really was true. I wasn't just saying that so people wouldn't worry about me. I really didn't think that anything bad was going to happen to me, and I had no doubt in my mind that I was going to survive.
Almost three years later, I'm realizing how crazy that was. What the hell made me so sure? I don't think I ever internalized how serious my condition was and how I so easily could have died. Listening to their conversation really opened my eyes to all of the things that could have gone wrong; I was just lucky that they didn't. Instead of asking myself why I'm alive, the question has really become, "How am I alive?" In their conversation, they said someone wasn't doing well because they came in really sick. Really sick? My bone marrow was 91% cancer when I got to Sloan Kettering. How much freaking sicker could I get? It makes me wonder what my doctors said about me behind closed doors. Was there ever a point when they were worried about how long I was going to survive? Were they surprised I was doing so well because they expected me to die? I don't actually want to know the answers to those questions, but it's something I'm starting to think about now that I'm witnessing the other side of the doctor-patient relationship. I don't think I was ever lied to or kept in the dark, but I also doubt they'd come into my room and say, "Your bone marrow looks terrible. You're not doing so well."
Ugh. I should stop being so morbid. This blog is no longer inspirational and interesting to read. It's just gonna make everyone with cancer have a panic attack. DISCLAIMER: I'm being completely negative and dramatic. I spend about 98% of my time doing fun things and NOT thinking about cancer. Well, at least not my own cancer. My job requires that I spend a lot of time thinking about cancer, but how to cure it, not how to die from it...
I really hope my PI never reads these posts, otherwise he's going to think he's subjecting me to extreme amounts of emotional stress. But that's what I get for voluntarily joining a lab that exists solely because so many people die from AML.
I went into my PI's office yesterday to talk about my project, and another doctor came in while I was there to ask him about some patients. They discussed a very sick NPM1-mutated person. They talked about how GCSF can be dangerous for someone with AML during induction. There were mentions of the infamous ANC and platelet counts and how high they have to be to have procedures done. And I felt the color drain from my face at the phrase, "If they survive." When they were done, the other doctor walked out, and my PI looked at me and said, "It's always weird having these conversations in front of you."
I stiffly smiled and nodded, and we continued with our conversation, but I could feel my face getting hot. He asked me if I was okay, and I insisted that I was, but the tears could not be fought. I felt like such an idiot. He apologized and said he needed to be more sensitive to the fact that this kind of stuff bothers me, but gimme a break; I should be able to accept the fact that people die of AML without having an emotional breakdown. But apparently, I can't. I almost laughed when he said I "clearly still have a lot of feelings about this," because this is actually the SECOND time I've starting crying in his office. Yeah, I have a lot of feelings. Who knew? I didn't.
I was pretty shaken up for the rest of the day. I couldn't stop thinking about everything that was said in that conversation and what exactly made me react that way. After talking to myself for a little bit, this is what I think: I'm starting to experience all the fear I should've experienced back on Day 1 when I had the nerve to say, "I'm truly and honestly not scared at all." At the time, that really was true. I wasn't just saying that so people wouldn't worry about me. I really didn't think that anything bad was going to happen to me, and I had no doubt in my mind that I was going to survive.
Almost three years later, I'm realizing how crazy that was. What the hell made me so sure? I don't think I ever internalized how serious my condition was and how I so easily could have died. Listening to their conversation really opened my eyes to all of the things that could have gone wrong; I was just lucky that they didn't. Instead of asking myself why I'm alive, the question has really become, "How am I alive?" In their conversation, they said someone wasn't doing well because they came in really sick. Really sick? My bone marrow was 91% cancer when I got to Sloan Kettering. How much freaking sicker could I get? It makes me wonder what my doctors said about me behind closed doors. Was there ever a point when they were worried about how long I was going to survive? Were they surprised I was doing so well because they expected me to die? I don't actually want to know the answers to those questions, but it's something I'm starting to think about now that I'm witnessing the other side of the doctor-patient relationship. I don't think I was ever lied to or kept in the dark, but I also doubt they'd come into my room and say, "Your bone marrow looks terrible. You're not doing so well."
Ugh. I should stop being so morbid. This blog is no longer inspirational and interesting to read. It's just gonna make everyone with cancer have a panic attack. DISCLAIMER: I'm being completely negative and dramatic. I spend about 98% of my time doing fun things and NOT thinking about cancer. Well, at least not my own cancer. My job requires that I spend a lot of time thinking about cancer, but how to cure it, not how to die from it...
Monday, July 21, 2014
Day 1046 - Mutated Mutation
Hi world. I'm back with more feelings.
I need to give a little background about my project in the lab to put this into context. Like I said in my last post, I work with patient samples of AML. Before I started doing real experiments, I was just screening the 20-30 samples we have to see if they have a mutation in the RUNX1 gene. We're working with this gene because it's associated with a poor prognosis, so finding a way to effectively treat these patients would be wonderful.
One of the samples I've been working with belonged to a patient that my PI knew personally...and I say "knew" because that patient died. The AML was really aggressive, as showcased by the fact that if you inject those cells into mice, they all get leukemia. Nasty, nasty stuff.
Anyway, I've been having trouble getting a good read on whether or not this sample has a RUNX1 mutation. My PI and I were talking about it today, and he said, "Well, I wouldn't spend too much time on it. [Patient]'s cells were NPM1-mutated, and those are almost never seen with RUNX1, so I highly doubt you'll find a RUNX1 mutation in that exon."
Allow me to refer you all back to Day 13 - Jailbreak, when I first received the results of my cytogenetic testing. My leukemia cells had an NPM1 mutation. I was informed that this was associated with a good prognosis and that my cells would likely be more susceptible to chemotherapy, and this is why NPM1 and RUNX1 are almost never seen together.
Then why, for the love of God, did this patient die? NPM1 is supposed to put you in a low-risk category, yet here we have this person's crazy-ass cells that express weird adhesion proteins and make a lot of mice really unhappy.
At first, it wasn't clear to me why this bothered me so much. I'm not necessarily scared of relapsing; the scientist/logical person inside of me understands that no two cases of cancer are exactly the same, and I know that going into remission after only three rounds of chemo when my bone marrow started out at 91% cancer cells is pretty damn good.
No, this isn't fear. This is survivor's guilt at its finest. It's hard enough for me to deal with people dying of cancer in general, and it's even worse when it's leukemia. But to have the SAME mutation as me? It's not fair. That person should have responded to chemo and been completely fine, just like me. Did this person feel a sense of relief when they found out they had that mutation? Only for this to happen? Ugh. Being a cancer survivor should make me feel proud and empowered, but in situations like this, it mostly makes me hate myself.
Aside from my crippling guilt, a crazy thing to think about is how this person's NPM1-mutated cells ended up in the hands of a girl who also had NPM1-mutated leukemia. Maybe this person would be glad to know that their cells are being studied by someone who thoroughly understands and empathizes with what they went through. I guess that's why I do what I do, right?
Meh. I'll keep telling myself that.
I need to give a little background about my project in the lab to put this into context. Like I said in my last post, I work with patient samples of AML. Before I started doing real experiments, I was just screening the 20-30 samples we have to see if they have a mutation in the RUNX1 gene. We're working with this gene because it's associated with a poor prognosis, so finding a way to effectively treat these patients would be wonderful.
One of the samples I've been working with belonged to a patient that my PI knew personally...and I say "knew" because that patient died. The AML was really aggressive, as showcased by the fact that if you inject those cells into mice, they all get leukemia. Nasty, nasty stuff.
Anyway, I've been having trouble getting a good read on whether or not this sample has a RUNX1 mutation. My PI and I were talking about it today, and he said, "Well, I wouldn't spend too much time on it. [Patient]'s cells were NPM1-mutated, and those are almost never seen with RUNX1, so I highly doubt you'll find a RUNX1 mutation in that exon."
Allow me to refer you all back to Day 13 - Jailbreak, when I first received the results of my cytogenetic testing. My leukemia cells had an NPM1 mutation. I was informed that this was associated with a good prognosis and that my cells would likely be more susceptible to chemotherapy, and this is why NPM1 and RUNX1 are almost never seen together.
Then why, for the love of God, did this patient die? NPM1 is supposed to put you in a low-risk category, yet here we have this person's crazy-ass cells that express weird adhesion proteins and make a lot of mice really unhappy.
At first, it wasn't clear to me why this bothered me so much. I'm not necessarily scared of relapsing; the scientist/logical person inside of me understands that no two cases of cancer are exactly the same, and I know that going into remission after only three rounds of chemo when my bone marrow started out at 91% cancer cells is pretty damn good.
No, this isn't fear. This is survivor's guilt at its finest. It's hard enough for me to deal with people dying of cancer in general, and it's even worse when it's leukemia. But to have the SAME mutation as me? It's not fair. That person should have responded to chemo and been completely fine, just like me. Did this person feel a sense of relief when they found out they had that mutation? Only for this to happen? Ugh. Being a cancer survivor should make me feel proud and empowered, but in situations like this, it mostly makes me hate myself.
Aside from my crippling guilt, a crazy thing to think about is how this person's NPM1-mutated cells ended up in the hands of a girl who also had NPM1-mutated leukemia. Maybe this person would be glad to know that their cells are being studied by someone who thoroughly understands and empathizes with what they went through. I guess that's why I do what I do, right?
Meh. I'll keep telling myself that.
Wednesday, July 16, 2014
Day 1041 - I'm Bringing Blogging Back
I know what you're thinking, and yes, I used a day counter.
I don't know what it was about today that made me decide to revive this blog. NO, I DON'T HAVE CANCER AGAIN. I think it was earlier today when I started talking to myself about my cancer-related feelings, I thought, "Why don't I share this with the internet again?" I'll feel less crazy if I at least have an audience. Plus, I guess it's pretty unrealistic for me to act like it only took exactly a year to recover.
This summer, I'm working in an AML research lab at the Cancer Center here in Rochester. And let me tell you, I love it. I work with amazing people, my project is so interesting, and I really feel like I'm contributing to something that will have a positive impact on people with AML.
Of course, there is a slight downside to this; I'm really being forced to deal with all of the emotional aspects of my experience in a way that I'm now realizing I never did. When I was diagnosed, something inside me shifted, and I went into survival mode. The social workers and psychologists constantly reminded me that "it's okay to be sad and/or scared," and I kept reassuring them that I was completely fine. My experiences this summer are making me understand why they thought I was using humor to "cope."
In the lab, I work with patient AML samples. People get diagnosed, their leukemia cells get extracted and delivered to us in a bag, we give them a name like "061812," and we do our experiments. For the most part, I feel removed enough from these samples that it doesn't bother me. But whenever we do the experiments and we get a particularly interesting sample, we go back to the records to learn a little more about the patient. And most of the time, it's not happy news. "Oh yeah, that person was extremely sick when he came in. He died pretty soon after he was diagnosed."
Oh, okay, great.
About a month ago, I shadowed my PI for an afternoon while he was in clinic. I thought it would be pretty interesting to talk to people who had AML and see how the doctors handled all the cases. It wasn't. Adult AML is treated completely differently than pediatric AML. Most of the patients are too old to handle the absurd amount of chemotherapy that I got, so a lot of them end up relapsing. And if you keep relapsing, it will eventually kill you. So for me to shake the hand of someone who could very possibly die of what I got through in just a few months is not simply uncomfortable. It's traumatizing. And it brought back that burning question I kept asking myself when my hospital roommate died: Why am I alive?
I know there's no answer to that. I'm alive, I'm thankful that's how it worked out, and now I'm doing my best to help other people by working in this lab, raising money for the LLS, and hopefully writing this blog so other people like me know it's okay to have a lot of feelings. Even if you don't like talking about them.
Today I went to a talk at Strong about leukemia stem cells. The basic concept is that some people have these incredibly stubborn leukemia cells that become chemo-resistant and cause people to either never achieve remission or keep relapsing. It was at this talk that I truly realized what makes my job so personally terrifying. In order to prove that your research is worthwhile, you need to emphasize how deadly the disease is, how difficult/impossible it is to treat, and how many people are dying of it. As a survivor, I need to sit there and convince myself that I had a good-prognosis mutation, that my treatment went perfectly fine, and that I'm not going to die.
And that contradiction is what's making this summer so...interesting.
I don't know what it was about today that made me decide to revive this blog. NO, I DON'T HAVE CANCER AGAIN. I think it was earlier today when I started talking to myself about my cancer-related feelings, I thought, "Why don't I share this with the internet again?" I'll feel less crazy if I at least have an audience. Plus, I guess it's pretty unrealistic for me to act like it only took exactly a year to recover.
This summer, I'm working in an AML research lab at the Cancer Center here in Rochester. And let me tell you, I love it. I work with amazing people, my project is so interesting, and I really feel like I'm contributing to something that will have a positive impact on people with AML.
Of course, there is a slight downside to this; I'm really being forced to deal with all of the emotional aspects of my experience in a way that I'm now realizing I never did. When I was diagnosed, something inside me shifted, and I went into survival mode. The social workers and psychologists constantly reminded me that "it's okay to be sad and/or scared," and I kept reassuring them that I was completely fine. My experiences this summer are making me understand why they thought I was using humor to "cope."
In the lab, I work with patient AML samples. People get diagnosed, their leukemia cells get extracted and delivered to us in a bag, we give them a name like "061812," and we do our experiments. For the most part, I feel removed enough from these samples that it doesn't bother me. But whenever we do the experiments and we get a particularly interesting sample, we go back to the records to learn a little more about the patient. And most of the time, it's not happy news. "Oh yeah, that person was extremely sick when he came in. He died pretty soon after he was diagnosed."
Oh, okay, great.
About a month ago, I shadowed my PI for an afternoon while he was in clinic. I thought it would be pretty interesting to talk to people who had AML and see how the doctors handled all the cases. It wasn't. Adult AML is treated completely differently than pediatric AML. Most of the patients are too old to handle the absurd amount of chemotherapy that I got, so a lot of them end up relapsing. And if you keep relapsing, it will eventually kill you. So for me to shake the hand of someone who could very possibly die of what I got through in just a few months is not simply uncomfortable. It's traumatizing. And it brought back that burning question I kept asking myself when my hospital roommate died: Why am I alive?
I know there's no answer to that. I'm alive, I'm thankful that's how it worked out, and now I'm doing my best to help other people by working in this lab, raising money for the LLS, and hopefully writing this blog so other people like me know it's okay to have a lot of feelings. Even if you don't like talking about them.
Today I went to a talk at Strong about leukemia stem cells. The basic concept is that some people have these incredibly stubborn leukemia cells that become chemo-resistant and cause people to either never achieve remission or keep relapsing. It was at this talk that I truly realized what makes my job so personally terrifying. In order to prove that your research is worthwhile, you need to emphasize how deadly the disease is, how difficult/impossible it is to treat, and how many people are dying of it. As a survivor, I need to sit there and convince myself that I had a good-prognosis mutation, that my treatment went perfectly fine, and that I'm not going to die.
And that contradiction is what's making this summer so...interesting.
Tuesday, April 1, 2014
Day 935 - PUBLISHED!
WHOA. It's been a super long time since I've blogged.
I'm 22. I'm a junior in college. I have a new boyfriend. I joined a band. I climbed a mountain. I'm doing cancer research. I raised $6,000 for the LLS. I got my last bone marrow biopsy a few weeks ago.
...AND I PUBLISHED MY BLOG AS A BOOK!
Thank you so much to everyone who's been supporting me in this endeavor. I'm so excited, I can't even tell you. I'm sorry the book is kind of expensive...it costs a lot to print because of the colored pictures. But I promise it's worth it!
If you'd like to relive all of my stories in print, please go to www.createspace.com/4748554 to buy your own copy of Getting Over a Cold: The Cancer Chronicles. And if you know someone who's going through something similar, please share it with them!
Thanks again everyone!
I'm 22. I'm a junior in college. I have a new boyfriend. I joined a band. I climbed a mountain. I'm doing cancer research. I raised $6,000 for the LLS. I got my last bone marrow biopsy a few weeks ago.
...AND I PUBLISHED MY BLOG AS A BOOK!
Thank you so much to everyone who's been supporting me in this endeavor. I'm so excited, I can't even tell you. I'm sorry the book is kind of expensive...it costs a lot to print because of the colored pictures. But I promise it's worth it!
If you'd like to relive all of my stories in print, please go to www.createspace.com/4748554 to buy your own copy of Getting Over a Cold: The Cancer Chronicles. And if you know someone who's going through something similar, please share it with them!
Thanks again everyone!
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