For the last few days, I've been joking about everyone complaining about needing to quarantine, and I'm like, amateurs! I had to stay in my germ-free bubble for 6 months when I was on chemo! You're going stir-crazy after three days? CRY ME A RIVER!
But then today, even I started feeling really antsy and anxious, and I had the same reaction to myself: Why are you freaking out already? You've handled so much worse than this, how is THIS making you go stir-crazy?
The huge difference between now and eight years ago is what's going outside of the quarantine bubble - the insane, apocalyptic pandemic. I know that's stupidly obvious, but it made me realize that it's not necessarily the isolation that's upsetting us; it's the whole situation. The fear. There's so much uncertainty, so many unknowns, and so much sickness and sadness.
Again, no shit, Allison. Why tf are you even blogging again?
Because as someone who has truly experienced extreme social distancing, I know that there is a way to do this without losing your mind. We need to focus on what matters, and right now, that is our health and the health of others around us, both physical and mental.
While I realize that's easier said that done, hear me out. When I was sick, I spent my isolated months doing puzzles, playing the piano, watching TV, latch-hooking, playing The Sims 3, doing Pilates with YouTube videos, going on long walks around my neighborhood, and most importantly, keeping in touch with all of my friends and family since I was too immunocompromised to be around them. Of course I had times when I was bored, but overall, I really was okay.
So here we are, in the midst of a global crisis, being told to stay at home and interact with as few people as possible. And people are going nuts. But what if we, just, you know, stopped obsessing with what's happening outside of our bubbles for a minute? Like really, why am I constantly checking the map with updated numbers of COVID-19 cases and death counts? How is this benefiting me? I saw some people temporarily deactivate their Facebook accounts. I think that's a GREAT move, one I might make soon. What good comes of scrolling through all of the doom and gloom? In reality, we're at the point in this crisis that what's going on out there is not going to affect what we're currently being told to do: STAY HOME.
That's one way my experience eight years ago was somewhat similar to now; there was no point in worrying about cancer or my treatment or the possibility of dying, because no matter what happened, my doctors were still gonna tell me I couldn't go out.
So next time you feel yourself panicking, stop. Turn off the news. Stop scrolling. Call a friend or family member. Read a book. Bake some cookies. You're not going stir-crazy, you're just scared. And that's okay. But don't dwell on it. Be smart and stay in. But don't panic. We'll be okay. Trust me, I didn't survive cancer just to be taken down by a respiratory virus. Hang in there, we got this! =)
- Allison
P.S. Want something to read? Spend your quarantine reading about MY quarantine! Want something to cheer you up? Here's my playlist of happy and uplifting songs I listen to when I'm sad. In the meantime, I'll be watching all 21 seasons of Law & Order: SVU.
Wednesday, March 18, 2020
Sunday, September 9, 2018
Day 2557 - Aftermath Adventures
It's getting to the point where I've been in remission long enough that I'm forgetting how many years it's been without thinking about it for a minute. And that's amazing!
Although, of course it's not as simple as just being in remission. I'm never truly "done" with the cancer portion of my life; I still require regular checkups to make sure I'm not having any long-term effects from my treatment.
So let's talk about those! First stop, my ovaries:
If you've ever seen me in the presence of a baby, you know that I start squealing, "LOOK AT THE BABY!" and giggling and making noises that only dogs can hear. I've even had a friend take a video of me watching baby videos. I like babies.
So the idea of potentially not being able to ever have one of my own was kind of scary. My oncologist wasn't particularly worried, but she still recommended I get evaluated just to make sure that if anything was wrong, I froze my eggs before I got too old.
I made an appointment at the Strong Fertility Center, and after some confusion with the receptionist, I explained to her that I'm not TRYING to get pregnant, I just need to know if it's even possible. At my first appointment, I gave my doctor, Dr. Bhagavath, my list of chemotherapy drugs and went over my health history. He asked me if my period ever naturally stopped during my treatment, and when I told him no, he was like, "Oh, well that's great. I don't think anything's wrong."
They did a bunch of blood tests for different hormones, as well as an ultrasound where they can literally count the number of follicles on your ovaries, which blew my mind. A few days later, I went for my followup to go over the test results, and the doctor said, "Your results aren't just normal, they're fantastic!"
It kind of cracked me up how excited Dr. Bhagavath was, but he said the average age of his patients is 38, meaning he's not often delivering good news. For someone my age, it's normal to have about 8-12 follicles in total. They counted 15 in one ovary.
So that was extremely relieving news to receive. He actually said the words, "You look like you've never had chemo," which says a lot given how much I got. And as I told my fiancé, "WE CAN HAVE SO MANY BABIES!"
Oh right...did I mention I have a fiancé? I'm getting married in 6 weeks to Derek, the most wonderful man in the world. =) It's crazy to think about how when I was diagnosed back in 2011, I assumed that I wouldn't live long enough to ever get married, and now here we are, preparing for a wedding! I'm already planning on sending my doctors from the leukemia team a long thank-you note with a wedding picture so I can show them the part of my life they were able to give back to me.
Alright, onto the next issue: chemotherapy-related cognitive dysfunction, or as it is more commonly known, "chemo-brain." Ever since going back to school in 2012, I felt a little "off." I had very close to a photographic memory before my treatment, where I could easily remember dates, addresses, phone numbers, and even credit card numbers after looking at them once or twice. But when I got back to school, I was forgetting names, fishing for words, and I was studying twice as hard to come up with the same, if not worse, results.
I expressed this to my doctors, and they were mostly dismissive of it. They said they don't normally see any cognitive effects from chemotherapy, and I wanted to be like, you literally injected chemo into my spinal fluid like six times, are you seriously telling me that didn't affect my BRAIN at all? Also, ALL OF YOUR PATIENTS ARE FIVE YEARS OLD. Correct, they don't normally see it because they don't normally have kindergarteners coming in and complaining that they can't remember their social security number (real thing that happened to me).
Fast forward a few years, and now I'm working on my M.S. in molecular biology. I take one class at a time, and I often need to watch lectures 2-3 times before I really feel like I understand the information. And when I have to read a lot of dense material, I usually have to have coffee, and if that doesn't work, sometimes Derek will find me crying over my papers because I've been reading the same paragraph for two hours.
Now, you might be reading this and thinking, "Hmm, this sounds kind of like AD/HD." I thought so too.
A few months ago, I saw a neuro-oncologist here at the Wilmot Cancer Center, and after taking some medical and anecdotal history, he said, without hesitation, that I have cognitive dysfunction related to chemotherapy.
Well, great. Tell me something I don't know.
Good news: I feel very validated now that a medical professional has recognized that something is wrong with me. And hopefully this being documented will be a small step towards actively monitoring these kinds of potential deficits in patients. More good news is that I'm still very high-functioning; a lot of people, especially older patients, can have pretty severe and debilitating side effects.
Bad news: They can't really do anything for me. He said a neuropsychological evaluation won't show any deficits because it's not meant to detect subtle changes like mine. He said, "You'll go in, you'll do really well on the tests, and they'll tell you that nothing's wrong." And I guess in the grand scheme of things, that's true; I'm not complaining that I'm stupid and braindead. But even in this situation, I felt a twinge of being dismissed because my problems weren't nearly as bad as what they've seen. And I get that! I'm very grateful that I'm living a happy, normal life. But that doesn't mean that things haven't changed and become more difficult for me.
Since I mentioned that coffee helps me focus, he thought that a prescription of Ritalin might help me in the same way, and I could take it as-needed. I won't really need that until I'm in classes again, so I'll see how it works come January.
When I went to my first appointment at the long-term followup clinic, they gave me a list of all the drugs I was on, the potential long-term effects, and the recommended screening processes for each issue. Now, I always find this list pretty amusing because according to the doctors, it's organized from most likely side effect to least likely. Here is that list:
I laughed in the nurse practitioner's face when she handed that to me, and I said, "How the hell is 'distress' not the top of that list?"
I was talking to Derek about this a few weeks ago - how so many doctors approach medicine from a strictly physical perspective and don't consider the emotional or mental components of a person's health. Because of this, you end up with bullshit lists like this one that put mental health disorders on the bottom as an afterthought. I've had a million echocardiograms to check my heart. I've gotten multiple surveys from MSKCC asking about my eating and exercise habits. I had a fertility specialist tell me I would have no problem getting pregnant at 35. But I also spent 36 hours in an inpatient psychiatric unit after threatening to kill myself. Why was no one monitoring for that?
This leads me to a bunch of important points:
There REALLY needs to be more focus on the mental and emotional impact of cancer in adolescent and young adult patients. I am so grateful that my doctors had the knowledge and understanding of my disease to cure me and give me a second chance at life, but I'm SURE I am not the only survivor who's ever had debilitating depression or PTSD. It took me like two years to be able to get a haircut without crying afterwards. But don't worry, my bone density scan came back completely normal!
Speaking of adolescents and young adults, this is the only group of cancer patients that hasn't seen drastic improvement in survival outcomes over the past few decades. It's a relatively small population, but there are still millions of us who have been affected by cancer and don't necessarily have the the proper resources and support to deal with our kinds of losses, like being out of school, the feeling of isolation from friends and family, or even simply the trauma of having to face the concept of your own mortality at such a young age. This is why I support organizations like the Dear Jack Foundation; it focuses on this specific population and getting patients the support they need.
It's been seven years since my diagnosis, and while it's getting easier and easier for me to deal with post-cancer issues, I really never will be completely done. That being said, let this serve as a reminder to everyone who's supported me over the last seven years that every 9 minutes, someone dies of blood cancer. Not everyone is as lucky as I was, which is why we need to keep doing our part in eradicating this disease. Click here if you want to donate to the Leukemia & Lymphoma Society!
As always, thank you to everyone who's been following my journey since 2011 and continuing to support me, my family, and my cause. Here's to a happy, healthy future for everyone. <3
Although, of course it's not as simple as just being in remission. I'm never truly "done" with the cancer portion of my life; I still require regular checkups to make sure I'm not having any long-term effects from my treatment.
So let's talk about those! First stop, my ovaries:
If you've ever seen me in the presence of a baby, you know that I start squealing, "LOOK AT THE BABY!" and giggling and making noises that only dogs can hear. I've even had a friend take a video of me watching baby videos. I like babies.
So the idea of potentially not being able to ever have one of my own was kind of scary. My oncologist wasn't particularly worried, but she still recommended I get evaluated just to make sure that if anything was wrong, I froze my eggs before I got too old.
I made an appointment at the Strong Fertility Center, and after some confusion with the receptionist, I explained to her that I'm not TRYING to get pregnant, I just need to know if it's even possible. At my first appointment, I gave my doctor, Dr. Bhagavath, my list of chemotherapy drugs and went over my health history. He asked me if my period ever naturally stopped during my treatment, and when I told him no, he was like, "Oh, well that's great. I don't think anything's wrong."
They did a bunch of blood tests for different hormones, as well as an ultrasound where they can literally count the number of follicles on your ovaries, which blew my mind. A few days later, I went for my followup to go over the test results, and the doctor said, "Your results aren't just normal, they're fantastic!"
It kind of cracked me up how excited Dr. Bhagavath was, but he said the average age of his patients is 38, meaning he's not often delivering good news. For someone my age, it's normal to have about 8-12 follicles in total. They counted 15 in one ovary.
So that was extremely relieving news to receive. He actually said the words, "You look like you've never had chemo," which says a lot given how much I got. And as I told my fiancé, "WE CAN HAVE SO MANY BABIES!"
Oh right...did I mention I have a fiancé? I'm getting married in 6 weeks to Derek, the most wonderful man in the world. =) It's crazy to think about how when I was diagnosed back in 2011, I assumed that I wouldn't live long enough to ever get married, and now here we are, preparing for a wedding! I'm already planning on sending my doctors from the leukemia team a long thank-you note with a wedding picture so I can show them the part of my life they were able to give back to me.
Alright, onto the next issue: chemotherapy-related cognitive dysfunction, or as it is more commonly known, "chemo-brain." Ever since going back to school in 2012, I felt a little "off." I had very close to a photographic memory before my treatment, where I could easily remember dates, addresses, phone numbers, and even credit card numbers after looking at them once or twice. But when I got back to school, I was forgetting names, fishing for words, and I was studying twice as hard to come up with the same, if not worse, results.
I expressed this to my doctors, and they were mostly dismissive of it. They said they don't normally see any cognitive effects from chemotherapy, and I wanted to be like, you literally injected chemo into my spinal fluid like six times, are you seriously telling me that didn't affect my BRAIN at all? Also, ALL OF YOUR PATIENTS ARE FIVE YEARS OLD. Correct, they don't normally see it because they don't normally have kindergarteners coming in and complaining that they can't remember their social security number (real thing that happened to me).
Fast forward a few years, and now I'm working on my M.S. in molecular biology. I take one class at a time, and I often need to watch lectures 2-3 times before I really feel like I understand the information. And when I have to read a lot of dense material, I usually have to have coffee, and if that doesn't work, sometimes Derek will find me crying over my papers because I've been reading the same paragraph for two hours.
Now, you might be reading this and thinking, "Hmm, this sounds kind of like AD/HD." I thought so too.
A few months ago, I saw a neuro-oncologist here at the Wilmot Cancer Center, and after taking some medical and anecdotal history, he said, without hesitation, that I have cognitive dysfunction related to chemotherapy.
Well, great. Tell me something I don't know.
Good news: I feel very validated now that a medical professional has recognized that something is wrong with me. And hopefully this being documented will be a small step towards actively monitoring these kinds of potential deficits in patients. More good news is that I'm still very high-functioning; a lot of people, especially older patients, can have pretty severe and debilitating side effects.
Bad news: They can't really do anything for me. He said a neuropsychological evaluation won't show any deficits because it's not meant to detect subtle changes like mine. He said, "You'll go in, you'll do really well on the tests, and they'll tell you that nothing's wrong." And I guess in the grand scheme of things, that's true; I'm not complaining that I'm stupid and braindead. But even in this situation, I felt a twinge of being dismissed because my problems weren't nearly as bad as what they've seen. And I get that! I'm very grateful that I'm living a happy, normal life. But that doesn't mean that things haven't changed and become more difficult for me.
Since I mentioned that coffee helps me focus, he thought that a prescription of Ritalin might help me in the same way, and I could take it as-needed. I won't really need that until I'm in classes again, so I'll see how it works come January.
When I went to my first appointment at the long-term followup clinic, they gave me a list of all the drugs I was on, the potential long-term effects, and the recommended screening processes for each issue. Now, I always find this list pretty amusing because according to the doctors, it's organized from most likely side effect to least likely. Here is that list:
I laughed in the nurse practitioner's face when she handed that to me, and I said, "How the hell is 'distress' not the top of that list?"
I was talking to Derek about this a few weeks ago - how so many doctors approach medicine from a strictly physical perspective and don't consider the emotional or mental components of a person's health. Because of this, you end up with bullshit lists like this one that put mental health disorders on the bottom as an afterthought. I've had a million echocardiograms to check my heart. I've gotten multiple surveys from MSKCC asking about my eating and exercise habits. I had a fertility specialist tell me I would have no problem getting pregnant at 35. But I also spent 36 hours in an inpatient psychiatric unit after threatening to kill myself. Why was no one monitoring for that?
This leads me to a bunch of important points:
There REALLY needs to be more focus on the mental and emotional impact of cancer in adolescent and young adult patients. I am so grateful that my doctors had the knowledge and understanding of my disease to cure me and give me a second chance at life, but I'm SURE I am not the only survivor who's ever had debilitating depression or PTSD. It took me like two years to be able to get a haircut without crying afterwards. But don't worry, my bone density scan came back completely normal!
Speaking of adolescents and young adults, this is the only group of cancer patients that hasn't seen drastic improvement in survival outcomes over the past few decades. It's a relatively small population, but there are still millions of us who have been affected by cancer and don't necessarily have the the proper resources and support to deal with our kinds of losses, like being out of school, the feeling of isolation from friends and family, or even simply the trauma of having to face the concept of your own mortality at such a young age. This is why I support organizations like the Dear Jack Foundation; it focuses on this specific population and getting patients the support they need.
It's been seven years since my diagnosis, and while it's getting easier and easier for me to deal with post-cancer issues, I really never will be completely done. That being said, let this serve as a reminder to everyone who's supported me over the last seven years that every 9 minutes, someone dies of blood cancer. Not everyone is as lucky as I was, which is why we need to keep doing our part in eradicating this disease. Click here if you want to donate to the Leukemia & Lymphoma Society!
As always, thank you to everyone who's been following my journey since 2011 and continuing to support me, my family, and my cause. Here's to a happy, healthy future for everyone. <3
Friday, February 24, 2017
Day 1995 - How to Have a Five-Year Remission Party
This post is longggggg overdue, but with my 3 1/2 jobs and graduate class, I got kind of busy and forgot to blog. But this is too important to ignore!
It is official. As of November 23, 2016, I have been in remission from acute myeloid leukemia for five years, a milestone that so many people with the disease never even come close to reaching.
I remember waking up from my bone marrow biopsy on that Wednesday before Thanksgiving 2011 to Dr. Roth telling me that they didn't find any traces of cancer and that they would proceed with treatment as planned. I must've been too drugged and too focused on the fact that I had to be on a chemo backpack for Thanksgiving to fully process what that meant. And I didn't realize until months later that you are considered "in remission" as soon as they stop finding cancer cells, whether that's during or after treatment.
I could spend the majority of this post reflecting on my journey and emphasizing how grateful I am to be alive, but I'm sure you all know that already. Let's talk about the fun stuff - my remission party.
Unfortunately, if you Google, "5-year remission party," you get pretty much no results. So hopefully this blog post will inspire other cancer survivors to celebrate in the ridiculous way that I did.
The overall theme of the party was "High Microbial." As anyone who followed my story knows, I was neutropenic for months at a time, requiring me to be on a low-microbial diet. This meant I couldn't eat foods like yogurt, fresh fruit or salad, sushi, fast food, and similar things that were not particularly "clean" foods. Since I was 106 pounds and jaundiced five years ago, alcohol was added to that list as well. Derek and I made red sangria and a rum and pineapple punch to represent blood and platelets. Finally, the last sentence of the event invite said, "Guests will be required to bring a recent CBC or submit to one at the door to make sure they can handle the amount of microbes at this party." I don't mess around.
I was unsurprised to learn that there weren't any good five-year remission party game suggestions on the internet, so I had to make my own. The first one, which made a ton of people uncomfortable, was "Pin the Triple-Lumen on the Cancer Patient." I printed out a bald cartoon girl and about 25 pictures of a triple-lumen, and people were spun around and had to pin it on her chest.
Later in the evening, everyone partook in the smashing of the cancer piñata. We LITERALLY BEAT CANCER. I wanted a big white circle piñata to represent a white blood cell, but since Party City doesn't have a cancer section, I had to settle with an iridescent white star that I labeled "CANCER." As the guests left, I gave them orange (leukemia ribbon color) goodie bags filled with tattoos, whistles, bouncy balls, and bubbles.
Honestly, probably the best thing about the night was that despite the absurdity of these activities, everyone was really into it and had a great time. Like, no one had ever been to a party where you've been encouraged to tape a printout of a medical device on bald cartoon girl or consume copious amounts of chicken fries from Burger King, so it was new and exciting for everyone! Had this party been thrown by anyone else, everyone probably would've been too uncomfortable, but you know me...I live for pole-vaulting over the line. =)
I did it! I survived! Five years ago, I didn't think I would make it to 20, and now here I am at 25, living like a healthy, normal(ish) person (normal people don't make cancer piñatas, I know). And in all seriousness, I am so incredibly grateful to my friends, my family, God, and most importantly, my doctors and treatment team, who did everything in their power to keep me alive, comfortable, informed, and well-taken-care-of since the day I was diagnosed. I'm not one for overstatements, but I would literally be dead without them, and I will never forget that.
So that's it, Internet. That's how you throw a five-year remission party. If you or someone you know is looking for party ideas, please feel free to direct them to this blog post.
P.S. I know I usually go for months without blogging, but I'm getting my fertility testing done next week, so I'll probably write about that soon!
It is official. As of November 23, 2016, I have been in remission from acute myeloid leukemia for five years, a milestone that so many people with the disease never even come close to reaching.
I remember waking up from my bone marrow biopsy on that Wednesday before Thanksgiving 2011 to Dr. Roth telling me that they didn't find any traces of cancer and that they would proceed with treatment as planned. I must've been too drugged and too focused on the fact that I had to be on a chemo backpack for Thanksgiving to fully process what that meant. And I didn't realize until months later that you are considered "in remission" as soon as they stop finding cancer cells, whether that's during or after treatment.
I could spend the majority of this post reflecting on my journey and emphasizing how grateful I am to be alive, but I'm sure you all know that already. Let's talk about the fun stuff - my remission party.
Unfortunately, if you Google, "5-year remission party," you get pretty much no results. So hopefully this blog post will inspire other cancer survivors to celebrate in the ridiculous way that I did.
The overall theme of the party was "High Microbial." As anyone who followed my story knows, I was neutropenic for months at a time, requiring me to be on a low-microbial diet. This meant I couldn't eat foods like yogurt, fresh fruit or salad, sushi, fast food, and similar things that were not particularly "clean" foods. Since I was 106 pounds and jaundiced five years ago, alcohol was added to that list as well. Derek and I made red sangria and a rum and pineapple punch to represent blood and platelets. Finally, the last sentence of the event invite said, "Guests will be required to bring a recent CBC or submit to one at the door to make sure they can handle the amount of microbes at this party." I don't mess around.
 |
| Ben committed and literally brought his CBC. |
 |
| Blood and platelet punch. |
 |
| High-microbial food! |
I was unsurprised to learn that there weren't any good five-year remission party game suggestions on the internet, so I had to make my own. The first one, which made a ton of people uncomfortable, was "Pin the Triple-Lumen on the Cancer Patient." I printed out a bald cartoon girl and about 25 pictures of a triple-lumen, and people were spun around and had to pin it on her chest.
Later in the evening, everyone partook in the smashing of the cancer piñata. We LITERALLY BEAT CANCER. I wanted a big white circle piñata to represent a white blood cell, but since Party City doesn't have a cancer section, I had to settle with an iridescent white star that I labeled "CANCER." As the guests left, I gave them orange (leukemia ribbon color) goodie bags filled with tattoos, whistles, bouncy balls, and bubbles.
Honestly, probably the best thing about the night was that despite the absurdity of these activities, everyone was really into it and had a great time. Like, no one had ever been to a party where you've been encouraged to tape a printout of a medical device on bald cartoon girl or consume copious amounts of chicken fries from Burger King, so it was new and exciting for everyone! Had this party been thrown by anyone else, everyone probably would've been too uncomfortable, but you know me...I live for pole-vaulting over the line. =)
I did it! I survived! Five years ago, I didn't think I would make it to 20, and now here I am at 25, living like a healthy, normal(ish) person (normal people don't make cancer piñatas, I know). And in all seriousness, I am so incredibly grateful to my friends, my family, God, and most importantly, my doctors and treatment team, who did everything in their power to keep me alive, comfortable, informed, and well-taken-care-of since the day I was diagnosed. I'm not one for overstatements, but I would literally be dead without them, and I will never forget that.
So that's it, Internet. That's how you throw a five-year remission party. If you or someone you know is looking for party ideas, please feel free to direct them to this blog post.
P.S. I know I usually go for months without blogging, but I'm getting my fertility testing done next week, so I'll probably write about that soon!
Friday, September 9, 2016
Day 1827 - Still Fighting the Good Fight
I feel like I start every cancerversary blog post with, "Wow, I can't believe it's been [insert number] years!"
Honestly, I'm starting to get so far removed from my diagnosis and treatment, I sometimes forget why I blog and raise money for the LLS and all the jazz. I mean, I'm not completely removed; I'm still hypersensitive to certain jokes or ideas (seriously, don't make jokes about me dying or relapsing. Can't believe that even needs to be said). But at the 4th annual benefit concert we had last weekend, I neglected to even mention that I'm a leukemia survivor.
A couple of my friends are always uncomfortable/confused when I tell them it's my cancerversary because they're like, "Uh...do we...celebrate that...?" I guess I don't think of September 9th as a celebration, but more as a reflection on where I am now versus where I was in 2011. Things aren't perfect, but overall, I'm doing really well! I like my job, I like my band, I'm getting my M.S., I have a wonderful boyfriend, I have lots of great friends, and I'm generally very happy. That's the first time I've been able to say that in a lonnnnnnng time.
The one thing that bothers me now that it's been almost five years since I've finished treatment is the fact that the cause has seem to become less important to everyone around me. To an extent, I can't blame them, since I literally just said that I sometimes forget why I'm doing this. But I'm still doing it. My life has been permanently changed by my experience with cancer, and because of that, I spend a significant amount of time and energy fundraising for the Leukemia & Lymphoma Society and trying to draw attention to the fact that leukemia is a terrible disease that needs to be eradicated, ESPECIALLY in kids. It gets harder and harder each year to reach my fundraising goal, and I've been lowering it with each year because I can see the trend. And part of me doesn't even want to have to play the cancer card in order to get people to donate because it shouldn't matter.
This is why I think it's good to recognize my cancerversary every year. It's a time to remember what this disease did not only to me, but to the thousands of kids diagnosed with blood cancers every year. Just because I have lots of hair and lots of white blood cells doesn't mean that blood cancer isn't an issue anymore. Sometimes I feel like people who followed my story don't realize this fact: Not every child who gets AML survives. And that freaking sucks. And that's why we need to improve treatments!
Sorry this has kind of been a rambling, preachy post. (I'm actually sick, so I'm not really 100% focused haha.) Let's wrap this up.
All in all, I'm proud of what I've accomplished over the last five years, and I'm extremely grateful for the extra time I've been given on Earth thanks to my doctors and all of the scientists who contributed to developing the drugs that cured me. I'm also thankful to all the fabulous people who have come in and out of my life since my diagnosis and have helped me get through everything life has continued to throw at me. I'm glad a lot of the emotional trauma is dissipating and turning into more of a drive to keep fighting blood cancer in any way I can. That being said, don't let my successful fight lead you to falsely believe that the whole problem is solved, which I think is a good attitude to take towards anything. Don't get complacent. Keep fighting. Keep improving. Keep moving forward.
And donate if you can. =)
http://pages.lightthenight.org/wcny/Rochestr16/AEberhardt
Happy 5th cancerversary to me!
Honestly, I'm starting to get so far removed from my diagnosis and treatment, I sometimes forget why I blog and raise money for the LLS and all the jazz. I mean, I'm not completely removed; I'm still hypersensitive to certain jokes or ideas (seriously, don't make jokes about me dying or relapsing. Can't believe that even needs to be said). But at the 4th annual benefit concert we had last weekend, I neglected to even mention that I'm a leukemia survivor.
A couple of my friends are always uncomfortable/confused when I tell them it's my cancerversary because they're like, "Uh...do we...celebrate that...?" I guess I don't think of September 9th as a celebration, but more as a reflection on where I am now versus where I was in 2011. Things aren't perfect, but overall, I'm doing really well! I like my job, I like my band, I'm getting my M.S., I have a wonderful boyfriend, I have lots of great friends, and I'm generally very happy. That's the first time I've been able to say that in a lonnnnnnng time.
The one thing that bothers me now that it's been almost five years since I've finished treatment is the fact that the cause has seem to become less important to everyone around me. To an extent, I can't blame them, since I literally just said that I sometimes forget why I'm doing this. But I'm still doing it. My life has been permanently changed by my experience with cancer, and because of that, I spend a significant amount of time and energy fundraising for the Leukemia & Lymphoma Society and trying to draw attention to the fact that leukemia is a terrible disease that needs to be eradicated, ESPECIALLY in kids. It gets harder and harder each year to reach my fundraising goal, and I've been lowering it with each year because I can see the trend. And part of me doesn't even want to have to play the cancer card in order to get people to donate because it shouldn't matter.
This is why I think it's good to recognize my cancerversary every year. It's a time to remember what this disease did not only to me, but to the thousands of kids diagnosed with blood cancers every year. Just because I have lots of hair and lots of white blood cells doesn't mean that blood cancer isn't an issue anymore. Sometimes I feel like people who followed my story don't realize this fact: Not every child who gets AML survives. And that freaking sucks. And that's why we need to improve treatments!
Sorry this has kind of been a rambling, preachy post. (I'm actually sick, so I'm not really 100% focused haha.) Let's wrap this up.
All in all, I'm proud of what I've accomplished over the last five years, and I'm extremely grateful for the extra time I've been given on Earth thanks to my doctors and all of the scientists who contributed to developing the drugs that cured me. I'm also thankful to all the fabulous people who have come in and out of my life since my diagnosis and have helped me get through everything life has continued to throw at me. I'm glad a lot of the emotional trauma is dissipating and turning into more of a drive to keep fighting blood cancer in any way I can. That being said, don't let my successful fight lead you to falsely believe that the whole problem is solved, which I think is a good attitude to take towards anything. Don't get complacent. Keep fighting. Keep improving. Keep moving forward.
And donate if you can. =)
http://pages.lightthenight.org/wcny/Rochestr16/AEberhardt
Happy 5th cancerversary to me!
Saturday, April 30, 2016
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:
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.
Friday, November 27, 2015
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."
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."
Wednesday, September 9, 2015
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.
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.
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