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!

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.