Day 1695 - What Doesn't Kill You Makes You Weaker

I've been meaning to blog for a really long time, but I just haven't felt up to it.

Life is difficult.

I had started writing a post about my trip to the Long Term Survivorship clinic at Sloan Kettering at the beginning of March. It was really long and unnecessarily detailed. Here's the gist:

• I'm an adult, so I have to see adult doctors now. I like my new doctor a lot.
• They gave me a list of potential long-term side effects of my treatment, most of which were not big concerns:
• Cardiotoxicity: I have to get an echocardiogram every 5 years.
• Cognitive deficits: She wasn't dismissive of this; I can get evaluated by Behavioral Health and see if they find anything wrong. If they do, I could potentially be given special accommodations in graduate school.
• Fertility: I met with the fertility specialist, and she recommended that I see a reproductive endocrinologist just to check things out. They might say everything's fine, they might say, "Hey, you should freeze some eggs." Then I'd have to get some hormone injections and a few ultrasounds, and I'd be good to go.
• They have free adventure-like trips for cancer survivors! I could go whitewater rafting or rock climbing because I survived cancer. Hell yeah.

My dad died a week and a half later.

I guess I don't really want to go into excruciating detail about this either. My dad had been pretty sickly for the last few years or so. He was always in and out of the hospital, and we never thought much of it. Then on a Monday afternoon while I was at work, his doctor called me and told me he was being moved to the ICU and I should probably come home ASAP. I left work, packed a bag, and headed to the Rochester airport. By the time I made it to Englewood Hospital at 11 PM that night, he was swollen, confused, and in so much pain. Luckily, he was conscious enough to know that my brother and I were there, and he continued to be his normal pain-in-the-ass self, taking off his oxygen mask because he was "suffocating," making us move his bed up and down, and yelling at us to move his legs so he could get more comfortable. After a long discussion with his doctors, we all decided that the DNR should be signed and he should be given pain medication. As we were leaving, we said, "See you tomorrow," and he said the only coherent thing he said all night: "I'm not gonna be here tomorrow."

We got a phone call early the next morning saying that his heart rate was dropping and we should come in as soon as we could. He was slightly conscious when we got there; he'd give a smirk or a blink when we talked to him. All of the levels on the monitors were slowly dropping over the course of the next few hours, he eventually stopped breathing, and like you see in every hospital scene on TV, we all were standing around watching his heart monitor stop. And he was gone.

Eh I guess that was still a lot of detail. That whole week was completely exhausting; lots of running errands for the wake and funeral, getting pictures together, and seeing a ton of friends and family. My brother and I thought it was would be a nice tribute to perform at the funeral, so Robert played the guitar and I sang one of my dad's favorite songs, "Melissa" by the Allman Brothers. Someone posted it on YouTube if you want to watch it.

So like, I know that none of this story is cancer-related. But I'm kind of at a point where I'm sick of shit like this happening, and this obviously can just be piled onto the whole cancer thing. When I came back to work the following Monday, a coworker said to me, "You never catch a break, do you?"

Most of the time, I laugh and shrug at comments like that, but today, I'm feeling it pretty hard. I do feel like I never catch a break. So many people tell me that I'm gonna come out stronger because of everything I've been through, but I don't think that's the case. In fact, it's the opposite. The more I have to deal with, the harder and more exhausting it gets. I don't "bounce back" the way I used to. Sure, some aspects of these experiences have changed me for the better - I'm a more understanding and empathetic person now, with insight into a whole lot of crap. But overall, when it comes to my ability to handle stress, sadness, and downright shitty things, it's getting worse and worse. And I'm pretty resentful of that.

What makes my dad's death so much harder than all the other things I've gone through is that time seems to be making it worse. The longer I go without being able to talk to him, the more of a reminder it is that he isn't there anymore. There are so many silly things that I'd love to share with him and then witness his typical "proud dad" reaction, and I get filled up pretty much every time I think about not being able to do that anymore.

As usual, I'm being a Negative Nancy, but I hope the readers of this blog (are any of you left?) will understand. I'm feeling pretty beaten down right now, and similar to my bone marrow after six rounds of induction chemo, I think it's gonna take me a little longer than usual to get back up from this. I guess I may be getting a little weaker each time, but hey, that doesn't mean I've given up.

In funnier/more ridiculous news, I recently went to the orthopedist about a pain in my foot, and I was diagnosed with the beginnings of osteoarthritis in the joint of my big toe. So as if having AML at 19 wasn't already enough of a sign that I'm actually 70 years old, why don't we throw some joint degeneration on top of it? I also get to wear a boot for 3 weeks. It's awesome.

Alright, that's all for the bad news and negativity. Let's end on a positive note. I got into grad school! I'll be doing an online M.S. in Molecular Biology at Lehigh University come the fall! I'll keep working full-time, I'll take classes part-time, and the U of R will pay for 70% of the tuition. I will master all of the science!

My brother and I were talking about telling that news to my dad. As Robert so accurately put it, "He would've exploded. He might not have known what Lehigh is, but he would've been a proud dad."

Rest in peace, Daddy. I'll always be your Sweet Pea.

Day 1540 - How Would You Like Your Eggs?

Happy Thanksgiving, internet world! Now that Facebook notifies you about what happened "On This Day" however many years ago, it reminded me that Monday was my 4-year anniversary of being declared in remission. Whoa, four years. I remember that Thanksgiving so clearly. I had just started my fifth round of chemo and was attached to my pump at the dinner table. I wasn't nauseous, but only because I was on such a heavy dose of Vistaril, so I couldn't keep my eyes open.

I went into Sloan Kettering today for a checkup and an echocardiogram. It's strange...I used to love going back there because I liked seeing all the nurses and receptionists and basically everyone I saw every day for an entire year. But now that I'm SO far off treatment, they barely even recognize me anymore, and it's kind of disappointing. Don't get me wrong, I know it's a good thing that I'm in the hospital so infrequently that no one recognizes me, and I'm extremely grateful for my health, but it's still weird to have what used to be such a huge part of my life slowly disappear.

Anyways, I got my finger stick and met with Dr. Steinherz and the nurse practitioner, and it ended up being a much longer appointment than I anticipated. My blood counts are all good, and Dr. Steinherz said that now that I'm 3 1/2 years off treatment, the chances of relapsing are less than 1%, which is fabulous news. One battle with cancer was like, five too many.

Of course, I can't just go into the clinic and have them tell me I look great and go home. The nurse practitioner brought up being transitioned into the long-term followup clinic, which is more focused on dealing with long-term side effects of the treatment rather than checking for cancer. The big thing for me is cardiotoxicity, which wasn't news to me, seeing as how I was there for an echocardiogram. Anthracycline-based chemotherapy puts me at risk for cardiomyopathy and arrhythmias. Knowing this, I'll get a little anxious every now and then and feel like I'm having a heart attack, but my understanding of this is that any effects wouldn't be seen until years and years after treatment. So I got my echo done, and it was uncomfortable to be smeared in cold jelly in a heavily air conditioned room, and I'm sure they'll call me if they think my heart is failing.

I also mentioned my memory problems to the NP, and when she said that it's typically seen more in patients who received radiation, I reminded her that they injected chemo into my spinal fluid. She agreed that it's probably had some effect. I told her it affected how I did in school, and even in my day-to-day life, I forget important things like my Social Security number or the PIN for my debit card, and if my roommates are lucky enough, I'll even forget to turn the oven off (sorry guys, I'm trying my best). So I'm going to be seeing someone in the long-term clinic for that as well.

What was a little more surprising to hear was that I could have potential issues with fertility. I made a joke to one of my friends recently that for all I know, I'm infertile, but apparently there's more truth to that than I thought. One of the drugs I received during induction chemo could've caused damage to my ovaries, and it puts me at risk to stop producing viable eggs much earlier than a woman who didn't undergo chemo. The nurse practitioner is setting up an appointment for me with the fertility clinic, and she said I should consider freezing my eggs just in case any damage did occur, sooner rather than later. Even on the Children's Oncology Group website, it says in bold and italics, "If a woman at risk for premature menopause desires to have children, it is best not to delay childbearing beyond the early thirties, because the period of fertility may be shortened after having cancer therapy."

This was a lot to take in all at once, and I started to get filled up in the office. The NP asked if I was okay, and I yelled, "YES, I'm medicated now, don't worry, keep talking!" and she burst out laughing in the typical "ahhh it's not really funny but it's so funny" way that all of the providers on that floor have done with me since day 1. It's not necessarily worrying about any of these individual problems that upset me, it's mostly the general frustration of how I always want to believe that I'm done with cancer and have moved on, but it keeps finding its way back into my life to make it juuuuuust a little more complicated.

Recently, someone said to me, "Allison, don't you want to be young, wild, and free?" and I responded, "Those are words that have never been used to describe me." Even though I'm at an age where I shouldn't be worried about much and should just be enjoying life, I've been put into this constant, subconscious state of thinking, "I don't have much time." After being diagnosed, it was pointed out to me by my psychologist that I have a hard time being stagnant, whether it be in life, in a relationship, anything, because I at one point believed that I wasn't going to be alive for very long and had no time to waste. This whole fertility thing kinda reaffirms that way of thinking, and I hate it. I'm 24 years old; I don't want to worry about rushing to have kids before my ovaries crap out. For God's sake, I don't even have a boyfriend. But alas, thanks to the potential long-term damage done by chemotherapy, I'm sitting here thinking that even if I do manage to save my eggs, what's the point of having kids if my heart's gonna fail like ten years later?

Ugh, I'm sorry, I'm being so morbid. It's all still kinda sinking in, but like I said, I'm medicated now, so I'll be fine lol.

Welp, I guess that's everything I have to report for now. I'll be sure to post again once I visit the long-term followup clinic. And to answer the question posed in my post title, "Frozen, please."

Day 1461 - Synesthesia

Remember when I wrote my epic one-year-later post back in 2012? Well, it's 2015, and today is already my 4th cancerversary. FOUR years. I remember that day like it was yesterday...it's hard to believe it's been that long. My life is completely different. I've changed as a person, people have come and gone from my life...too much to even keep track of. That's kind of what I like about this blog; it's one of the only constant things in my life since my diagnosis, and it's a nice way to document what's going on and be able to look back on what things were like however many years ago.

Since my life is relatively normal now (emphasis on the word "relatively"), I usually need to experience something pretty significant in order for me to blog about it, and while this might not seem like a big deal, I have a lot of feelings about this (I wouldn't be me if I didn't).

A few nights ago, we welcomed a bunch of new girls into Vocal Point, and we were going around the circle introducing ourselves. One of the things we had to say was "something interesting about ourselves that people might not necessarily know." When it got to me, I said that I have synesthesia. (Synesthesia is essentially a blending of senses. In my case, I see different colors when I hear particular musical notes.) A few seconds later, my friend said, "Allison is also a cancer survivor," and I laughed and said, "Oh wow. Yeah. I am. I can't believe I didn't say that."

I CAN'T BELIEVE I DIDN'T SAY THAT. For the longest time, I was very much defined by my status as a survivor. And I'm not complaining, it's just a fact. The internet literally knew me as "the girl with cancer who sings Adele." I was "the Vocal Point girl they had the benefit for." When I got back to school, I continued to be "that girl who had cancer," especially since everyone was asking me why I had cut my hair so short and why I was a 21-year-old sophomore. Being a cancer survivor became a very significant part of who I am, and it absolutely still is.

So let's talk about all the feelings I have about this. In some ways, this is awesome. Despite the fact that I'm still getting blood tests and echocardiograms, people around me are diagnosed with cancer left and right, I spend a large portion of my time raising money for the LLS, and I work in a cancer research lab, it's good to know that some part of me recognizes that there's more to life than cancer. I still struggle with survivor's guilt from time to time, and it can make me feel obligated to do all of this fundraising and research, but the truth is, sometimes I don't want to do all of that. Sometimes I just want to sing in my band and watch Criminal Minds and not worry about how I'm saving the world from leukemia. And that's okay. My mom said to me a while ago, "You were lucky enough to have been given a second chance at life. You don't owe the world anything. You just need to live." And she's right. And apparently, I'm finally starting to do that.

On the other hand, like I've said, being a survivor has shaped who I am as a person, and I don't want to lose that as I get farther away from the experience. Twenty years from now, I still want to be able to look back on my diagnosis, treatment, and recovery with clarity and remember all of the amazing things I learned during the course of it. I don't really mind being "the girl who wrote that cancer book" or anything like that; there are much worse things I could be, and I am proud of the things I've accomplished post-cancer.

In all honesty, everything I went through was way too traumatizing to ever be completely forgotten, so I'm not particularly worried. But I do find it interesting that I'm at a point in my life where I think seeing emerald green when I hear an E major chord is more intriguing than the time I had blood cancer.

Who knows what the future will bring? I'll report back on my 5th cancerversary and let you know.

Day 1412 - A Whole New Type of Inpatient

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. =)

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:

• 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...?

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.

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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.

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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

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...