Let me just start by saying no, I have not relapsed. This isn't completely about cancer, but it's definitely related, and I think it's an important story that needs to be told, especially if people are still reading this blog.
There's been a big movement recently to end the stigma that surrounds mental illness, and I wholeheartedly support it, but I feel like I've been a bit of a hypocrite. I wrote an entire book about my battle with cancer, yet I barely allude to the fact that I've been struggling with depression for almost seven years. So you know what? If I'm gonna talk the talk, I better walk the walk. As always, it's time to get real with you all.
I was in therapy BEFORE I was diagnosed with cancer, so as you can probably imagine, the whole leukemia ordeal didn't help with the depression. And I've actually been really open and honest about how that's affected me emotionally; I've harbored a lot of survivor's guilt, I have certain post-traumatic stress triggers, like getting my hair cut, and every now and then, I wonder how and why I'm alive. Don't get me wrong, the experience affected me in many positive ways as well; it truly opened my eyes to how caring and generous people can be, and that was a huge part of my healing process and my ability to stay optimistic during my intense treatments and seemingly never-ending hospital stays.
Unfortunately, I recently lost almost all of that positivity. I went through a lot of stressful events in the past few months - graduating, moving twice, starting a new job, a breakup - and the stress just kept piling on. I felt like I was drowning, so I tried to be proactive; I started eating better, I started running, and I scheduled a follow-up appointment with my psychologist, who I hadn't been to in about seven months. I felt better for a while, but earlier last week, I went into a downward spiral and got stuck in a negative thought loop for almost four days, and I didn't think I'd ever get out.
This is where my being a cancer survivor actually provided some good insight. I've had pretty bad depressive episodes in the past, and any time I had brief, fleeting thoughts about suicide, I had enough sense to say to myself, "Allison, you have come too far and put too much effort into surviving to back out now. You will get through this." If any of you remember the video I made when I took my last dose of chemo pills, I said that when I was diagnosed, all I could think about was all the things I didn't get to do with my life, like graduating college, getting a PhD, starting a family, etc. I felt that I had so much more life to live, and those were among the things that gave me the strength and motivation to keep fighting. Last Wednesday, at an emergency visit to my psychologist's office, I told her that none of that mattered anymore. I felt like I wasn't meant to ever be happy, and I didn't care about all of those things I wanted to do with my life because if I was going to feel this miserable, it wasn't worth being alive for them. She said to me, "I know you feel that way right now, but you need to understand that you are not in a good mental state to decide whether or not you want to be alive. You're at rock bottom. You are very, very depressed, and you need help." And she was right. There was still a small part of me that remembered everything that I've been through, and the fact that I was losing my grasp on that made me realize how badly I needed help. At that point, I didn't feel I could keep myself safe anymore, and she insisted that I go to the hospital.
After hours of waiting, a bunch of evaluations, answering the same questions over and over again, and a 45-minute ambulance transport at 1 AM, I was eventually admitted to the inpatient mental health unit at Newark-Wayne Community Hospital. Now, I'm no stranger to the hospital, but compared to the pediatric floor of Sloan Kettering, this experience was absolutely surreal. They took all of my belongings except for my clothes, everything on the unit was gray and white, the rooms had nothing but a bed and a small dresser, and they had to personally check on every patient every 15 minutes. They even confiscated my doughnut because they "only allow healthy snacks on the unit." THEY TOOK MY DOUGHNUT.
I woke up Thursday morning and was greeted with more questions and evaluations and a prescription of Zoloft. Since they took my phone, I had to call a coworker from the hospital phone to let him know that I wouldn't be in for the next two days, and I learned that I was only allowed four phone calls a day for ten minutes each. I was worried I would start to go stir-crazy, but at lunch, I realized they had a whole shelf of games and puzzles, so I pulled out a 500-piece puzzle and worked on it for about five hours straight until it was finished. A bunch of people on the unit asked me how I had so much patience, and I told them that it was meditative. After the breakdown I had the day before, I needed this time to completely check out from life and keep my mind off everything that was stressing me out. I've described depressive episodes like a broken ankle; you have to keep the weight off of it until it heals, otherwise it'll just get worse. That's what I needed to do - clear my head and not worry about anything until I regained some emotional stability.
I slept terribly Thursday night, but I was given the good news that I would be discharged that afternoon. While waiting for them to sort out the paperwork and followup appointments, I did another 500-piece puzzle (yes, two in 24 hours). My friend came to pick me up around 1 PM, and I was on my merry way.
So, why am I telling you all of this? Because the goal of this blog has always been to be honest and informative, and if people are still looking to it for support or even just a new perspective, then I better stick to it. Additionally, I think it's important for people to know that mental illness, in this case, major depressive disorder, is a very real thing that can affect anyone, even people who seem to have everything together. I just graduated college with a double-degree, I leased a car, I got an apartment, and I got a job, but I was so far gone last week that none of that mattered to me. I was really moved by the article ESPN wrote about Madison Holleran, the UPenn track star who jumped to her death in January 2014. It talked a lot about how her life on social media appeared happy and fun, but in reality, she was having a really difficult time navigating her freshman year of college and was obviously severely depressed. When someone like that commits suicide, people tend to focus on everything she had going for her. They can't believe someone so smart, beautiful, and successful would take her own life when she had so much to live for. That's what so scary about depression. It distorts your view of the world so drastically that you don't want to live in that world anymore. Madison Holleran was too mentally ill to appreciate all the wonderful things in her life, and she therefore lacked the ability to believe that things were going to improve. Sadly, I can resonate with that feeling now. I had given up, I was done trying to be happy, and I was in so much pain, I would have rather been dead than continue trudging through my day-to-day life. The truth is, I felt much closer to death that night than I ever did while I had cancer.
I REALLY don't want people to take this as a cry for attention or start to freak out and worry that I could be pushed over the edge any day now. That is not the goal here. I have two take-home messages for you:
1) Don't be judgmental of people who are struggling with mental illness. I am not a "crazy person" or "insane" or anything like that. The chemical imbalances in my brain make me extremely depressed, and say what you want, but that Zoloft is doing just as much to keep me alive as all that chemo did. Plus, you don't know what's going on in people's minds. A nurse on the inpatient unit called my depression "a real depression" because I had so many awful things happen to me in the last couple years, which really bothered me. Depression doesn't need to be justified by what some outside person considers a stressful event. For me, it took a rough transition and a life-threatening illness to drive me to the brink of suicide. If you have a predisposition for a mood disorder, it might only take a bad test grade. It doesn't make that person weak or crazy; it makes them clinically depressed, and there is real medical treatment for it. And this leads nicely into my second point...
2) If you're depressed, GET HELP. It's so easy to get stuck in the mindset of trying to work through it yourself, but sometimes it's just not enough, and I learned that the hard way. I wasn't just "in a bad mood," I couldn't function. I was so consumed by thoughts of suicide that I couldn't focus on what people were saying to me at work. That is not normal, that is not okay, but it IS fixable. You just have to stop being stubborn and allow it to be fixed. There is no shame in talking to a therapist or getting a psychiatric evaluation. A small change might make all the difference, and in some cases, it might save your life.
If you're wondering, I do feel much better now. This experience was the wake-up call I needed to make me realize that I needed more help. My medication is making me very drowsy, but I'll take drowsy over how I felt last week every time. I'm back at work, I'm singing with my band, and I feel generally happier and at peace with the stressors in my life. I'm able to be alone with my thoughts and simply enjoy life without worrying that I might fall back into a crippling depression. But if I do, I know exactly what to do and who to talk to to get out of it. In a nutshell, there's nowhere to go from here but up. =)
Wednesday, July 22, 2015
Wednesday, March 25, 2015
Day 1293 - Expressive Writing
There are a lot of reasons I hate my Psychology major, but today we're just going to deal with the fact that it brings back a lot of unwanted memories.
I have an exam in my Behavioral Medicine class next week, so I've been spending the past few days reading my textbook. This unit deals with coping mechanisms, pain management, and dealing with the terminally ill. Normally, I'm more interested in things that I can relate to, and I think that's why a lot of people are interested in psychology in general, but the further I get into these readings, the less I want to read it.
It started out okay. I legitimately enjoyed reading about coping mechanisms and thinking about how a bunch of them applied to me during different stages of my treatment (despite how intently I told the social worker that I wasn't coping). One of the interventions was "expressive writing;" my textbook explains that talking or writing about a traumatic event has the following benefits:
I have an exam in my Behavioral Medicine class next week, so I've been spending the past few days reading my textbook. This unit deals with coping mechanisms, pain management, and dealing with the terminally ill. Normally, I'm more interested in things that I can relate to, and I think that's why a lot of people are interested in psychology in general, but the further I get into these readings, the less I want to read it.
It started out okay. I legitimately enjoyed reading about coping mechanisms and thinking about how a bunch of them applied to me during different stages of my treatment (despite how intently I told the social worker that I wasn't coping). One of the interventions was "expressive writing;" my textbook explains that talking or writing about a traumatic event has the following benefits:
- It elicits emotional support from others
- It helps one organize his or her thoughts and find meaning in the experience
- It provides an opportunity for clarifying one's emotions
- Studies have shown that it alleviates some long-term psychological distress
Well, would ya look at that? I did it! I coped! I've explicitly stated in some of my previous posts that writing about all my feelings makes me feel better, so it's cool to see that there's actual research behind it. What I do think is hilarious, though, is the fact that it's supposed to have alleviated long-term distress. I wrote a goddamn book, yet I still have breakdowns about all the crazy shit that happened to me. Thank GOD for this blog, because I don't even want to imagine what I'd look like if I just let all of this fester for years. And hey, thanks for listening, internet world.
That being said, let's talk about the not-so-great aspects of reading about things that are relevant to me: terminal illness. IN CHILDREN. I was being super productive and ready to continue with my studying (which is a rare occurrence as a second-semester senior), and I turned to the page about dealing with terminal illness in children. I glanced, GLANCED, at a paragraph that discussed how children don't directly ask or talk about their dying; they'll say things like, "Can we celebrate Christmas early?" because they know they won't be alive for very long.
Full disclosure: I am sobbing as I write this, and I was as soon as I read that. I was inpatient for Christmas. All I can see is the pile of presents outside 8-year-old Ashlynn's room that she never got to open because she was too sick; she died on December 27th. I was in the hallway when the receptionist hugged her distraught mother and said, "She put up a good fight." I don't want to learn about how to discuss death with terminally ill children because it reminds me not only of all the dying kids I met, but also of how I got to prance out of that hospital unscathed.
Every time I think of Ashlynn, I'm overcome with such crippling guilt and sadness that I feel sick to my stomach. I only shared a room with her for a few days, and it's been over three years, but I still have this extremely emotional response to these things that remind me of her. "Why her and not me?" She suffered for two years and died. I had a few rounds of chemo, and now my biggest complaint is that I forget things. STFU, ALLISON. YOU ARE ALIVE. This is what survivor's guilt is. The theme of my post-cancer therapy was, "It's okay to be sad." I went through a horrific experience, and it's completely reasonable for me to feel sad or angry about the things that happened to me. Right? I don't know, sometimes I don't think it is. Things could have been a lot worse. Thinking about Ashlynn doesn't just make me sad that she died; it makes me hate myself for ever complaining about what what I went through.
This also brings me to another point that's not nearly as huge but still significant in the present moment: I'm going to be tested on this in a week. I couldn't read more than a paragraph of this chapter without bursting into tears, and I'm telling you how it's bringing up these intense feelings of guilt and self-loathing, but I'm going to have to learn it all. I've been sitting here thinking about my options. Part of me thinks that learning material for a class shouldn't make me so uncomfortable that I feel like I'm going to vomit. Another part of me thinks I should suck it up because they can't make special accommodations for my emotional instability. Imagine that conversation. "Hi Professor, I can't be tested on Chapter 12 because I had cancer and thinking of dying kids makes me hate myself."
Fuck this. I have more feelings than my stupid little brain can handle.
How's that for expressive writing...?
Wednesday, January 28, 2015
Day 1237 - Things That Aren't Funny
I've been meaning to write this post for a while. And I'll start by saying that this is NOT meant to be an attack on anyone who's ever said any of these things to me. I make cancer jokes all the time, and I definitely don't consider myself to be sensitive about it, but every now and then, someone says something that really bothers me. I can't blame them because I don't make it particularly clear where the line is, so I guess that's why I doing this post. And chances are, if these things bother ME, they'll definitely bother other people. So consider this a PSA.
---
1. Relapsing
SO many people have said to me, "If you ever get cancer again..." Just so you all know, I've been in remission for 3 1/2 years, and I still have to get blood tests every few months to make sure everything's okay. Getting cancer again is a very real thing, and if you relapse with AML, the prognosis is NOT good. So really, by implying that I could get cancer again, you're putting the idea in my head that it could still kill me. I don't like that.
2. Children dying of cancer
I'm not saying that anyone thinks this is funny, but sometimes people talk about it really nonchalantly. I was treated as a pediatric patient, so I spent that year of my life surrounded by extremely sick kids. My dad was once talking to another parent while I was getting a checkup, and she pointed out her 2-year-old daughter dancing around in a tutu. He smiled and pointed to me across the room and said that I was 19. The mother said to him, "Wow...I wish I would see my daughter live to be that old."
Being around all these kids is pretty much the reason for my constant "how/why am I alive?" crisis. I outlived my 11-year-old roommate. I don't ever want to hear about little kids dying of cancer. Honestly, I can't even remember the context in which something about this was said to me, but I remember feeling sick and thinking that I wanted to smack the person who brought it up. Don't be that person.
3. My inability to remember things
My last post was about how I have some annoying, lingering side effects of my treatment, one of them being "chemo brain." In a nutshell, I used to have a photographic memory, and now I forget everyone's names, I fish for words and don't speak as fluently, and I have to work harder than ever to keep my grades up. Don't EVER say to me, "Lolz are you sure, or is it the chemo brain talking?" or, "How would you know? You can barely remember anything." I may joke about it, but this problem really bothers me, and I'm extremely self-conscious about it. This is definitely one of those "it's only funny when I say it" kinds of things.
4. What I looked like while I was sick
I looked horrible. Most people going through chemo do. I lost 20 pounds, I had no hair, I had no eyebrows...I was a mess. But there are two important things to remember here. First, this WAS NOT MY FAULT. If you were not physically present when I was getting my treatment, I don't think you can actually conceptualize just how much chemo I had pumped into me. Given the circumstances, the doctors said I actually looked great. I was administered gallons of poison for seven months, and all that happened was I lost my hair and some weight. So yeah, YOU try looking good in that situation.
The other important point is that my physical appearance was the LAST of my concerns while I was sick. Yes, getting my head shaved sucked, but I got over that in about 2 hours because I was more worried about not having a functioning immune system or my collapsing lung. Don't FREAKING bring up how I looked "so sickly" or how it was "so obvious that something was wrong with me." I was focused on, you know, NOT DYING. The last thing I need is to feel bad about how I looked for that year.
---
I know this is coming across as a rant, but it's really not meant to. I want to open people's eyes to things that I or other cancer survivors can find to be extremely insensitive. Everything I've mentioned has been said to me by my close friends and family, so I know it's never intended to upset me or hurt my feelings, but a lot of the time, it inadvertently does. Like I've said before, it's taken me years post-treatment to come to terms with all of my residual feelings, so hopefully after more time passes, these things won't bother me as much. But until then, let's just steer clear of these topics. Thanks friends. =) <3
---
1. Relapsing
SO many people have said to me, "If you ever get cancer again..." Just so you all know, I've been in remission for 3 1/2 years, and I still have to get blood tests every few months to make sure everything's okay. Getting cancer again is a very real thing, and if you relapse with AML, the prognosis is NOT good. So really, by implying that I could get cancer again, you're putting the idea in my head that it could still kill me. I don't like that.
2. Children dying of cancer
I'm not saying that anyone thinks this is funny, but sometimes people talk about it really nonchalantly. I was treated as a pediatric patient, so I spent that year of my life surrounded by extremely sick kids. My dad was once talking to another parent while I was getting a checkup, and she pointed out her 2-year-old daughter dancing around in a tutu. He smiled and pointed to me across the room and said that I was 19. The mother said to him, "Wow...I wish I would see my daughter live to be that old."
Being around all these kids is pretty much the reason for my constant "how/why am I alive?" crisis. I outlived my 11-year-old roommate. I don't ever want to hear about little kids dying of cancer. Honestly, I can't even remember the context in which something about this was said to me, but I remember feeling sick and thinking that I wanted to smack the person who brought it up. Don't be that person.
3. My inability to remember things
My last post was about how I have some annoying, lingering side effects of my treatment, one of them being "chemo brain." In a nutshell, I used to have a photographic memory, and now I forget everyone's names, I fish for words and don't speak as fluently, and I have to work harder than ever to keep my grades up. Don't EVER say to me, "Lolz are you sure, or is it the chemo brain talking?" or, "How would you know? You can barely remember anything." I may joke about it, but this problem really bothers me, and I'm extremely self-conscious about it. This is definitely one of those "it's only funny when I say it" kinds of things.
4. What I looked like while I was sick
I looked horrible. Most people going through chemo do. I lost 20 pounds, I had no hair, I had no eyebrows...I was a mess. But there are two important things to remember here. First, this WAS NOT MY FAULT. If you were not physically present when I was getting my treatment, I don't think you can actually conceptualize just how much chemo I had pumped into me. Given the circumstances, the doctors said I actually looked great. I was administered gallons of poison for seven months, and all that happened was I lost my hair and some weight. So yeah, YOU try looking good in that situation.
The other important point is that my physical appearance was the LAST of my concerns while I was sick. Yes, getting my head shaved sucked, but I got over that in about 2 hours because I was more worried about not having a functioning immune system or my collapsing lung. Don't FREAKING bring up how I looked "so sickly" or how it was "so obvious that something was wrong with me." I was focused on, you know, NOT DYING. The last thing I need is to feel bad about how I looked for that year.
---
I know this is coming across as a rant, but it's really not meant to. I want to open people's eyes to things that I or other cancer survivors can find to be extremely insensitive. Everything I've mentioned has been said to me by my close friends and family, so I know it's never intended to upset me or hurt my feelings, but a lot of the time, it inadvertently does. Like I've said before, it's taken me years post-treatment to come to terms with all of my residual feelings, so hopefully after more time passes, these things won't bother me as much. But until then, let's just steer clear of these topics. Thanks friends. =) <3
Friday, November 28, 2014
Day 1176 - Survivorship
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...
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...
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.
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