*I wrote this in Denver, when I was at CancerCon at the end of April, and am finally posting it!*
I wanted to type this last night, but was a bit too tired, so here it goes.
Yesterday was the first day of sessions of Cancer Con. I attended two sessions.
I've had a great time in Colorado. Just being in the gorgeous outdoors, and reconnecting with so many people from last year has been awesome.
I was invited to the Stupid Side Effects session. This past year, the side effects have really slammed me. I've been cancer free, and am three years out from transplant (yay!) but the side effects seem to be increasing, both in number and intensity. It's been one of the hardest things to deal with this year. It was a small group in that session. Probably a dozen of us, huddled around two tables. There were AMGEN reps there, to listen in on what we said, and see how they can better serve the AYA community. We each went around, and gave a brief synopsis of where we were before diagnosis, the diagnosis, and what we are dealing with now. It was a very overwhelming time. Every person shared at least one thing I was going through. Every single person understood the fears I struggle with daily. Most of them had had high aspirations, or were living out their dreams. More than one said "life was perfect" before diagnosis. And now we were here. A tattered and bruised bunch, but still standing. Still ready to get busy living.
I was also invited to a session called the Path to Remission, and was conducted by Hope Lab. Everyone there was between the ages of 17-25 so it was a much closer and younger age range than some other sessions. There were those still in treatment as well. I met four other girls with Hodgkin's! We were tasked with writing a story, in small groups. The other two HL girls and I formed a group, because of our diagnosis and stage (post-treatment). We all face the same challenges-trouble breathing, joint pain, and hand neuropathy to name a few! After we created our story, we made a storyboard, and every group went around and explained their story board. One spoke on the hardships of roommates; another was on being disappointed when you can't do stuff with your friends, or other normal things for your age. The third board was on being mad, and not talking to anyone. Our board was our story-how hard it is to deal with the side effects. The other boards had an ending. Ours didn't because there is no end to our side effects.
I'm a very stoic person. I'm not usually very emotional. But this entire conference, I've felt like crying. When I see how many other people are dealing with the very same thing as me. When I hear other stories, about not receiving the answers you want, or just getting tired of facing the daily challenges. It's a lot to take in. When you meet so many people who've also relapsed, or have been told there are no more options.
I realized I squish my feelings down. I've had so many thoughts and worries this semester, but I don't ever let myself think about them. Sometimes I wonder why I do so many things, and am crazy involved with stuff. Last night, talking to my nurse navigator, I think I started to realize why. I found out I relapsed with my 3month scans. 112 days after I finished treatements, that were supposed to have an 80% cure rate, I had cancer again. I don't live in fear of the future, but I do live with a very uncertain future. I don't know when the cancer will come back. I am at a very high risk for multiple secondary cancers. I have so many side effects. Being diagnosed with the hemolytic anemia last year jolted me to the reality that there is so much that can happen to me that I don't know about. And I think that's why I do all that I do. I'm too busy to think about my life. My free thinking moments I spend making lists of things I could do for events or organizations I'm involved in. I want to have a reason I'm tired, a justification so that I don't have to wonder if perhaps there is something deeper about when I'm tired. When I relapsed, I had been really tired. I'd sleep all day Saturdays, just so I could function. My talisman is that if I don't sleep on Saturdays, I won't get sick again. I just feel like if I'm too busy, cancer can't catch me again. And I feel like I can't stop, because if I do, everything I have will be taken away again.
Amelia and I spoke last night. Blessings on the dear lady, who was super exhausted, but still spent more than an hour listening to me. We had spoken earlier about how Cancer Con is at such a bad time in the semester. I said I came because I gave it my all in the first two rounds of tests. Once I saw I wasn't getting A's, I figured it didn't matter what I got, as long as I passed. I hate that mentality. I want to care more. But I can't. Because all my efforts, and trying to really understand the materials, and studying, and tutoring, and so much else isn't paying of. I just came from a session on chemobrain. The speaker said it'd only last maybe 2-3 years out of treatment, if that. I'm over three years now. A guy spoke up, and said it's been 8 years since he finished treatment, and yet he still had it. It's hard. I feel like it's gotten worse for me this semester. Maybe it's the stress of school, or the amount of information I'm trying to remember, but I will just freeze mid-sentence. My mind absolutely blank. I feel like an idiot. I used to be so quick on the draw. I had a retort for everything. Now I can't even remember the simplest thoughts. I don't get good grades, and it hurts. I was the girl who was going to make the Dean's List every semester. Now, I'm lucky if I pass all my classes. The speaker said chemobrain doesn't mean you loose intelligence, just means that you have concentration and memory problems. Well I feel like I've lost my intelligence, because I cannot access it. It sucks.
Amelia said that what I'm doing is incredible. I don't want to sound prideful, but I guess it kinda is. Of the hundreds of survivors I've met, I've only ever met one in engineering. He was diagnosed half way through college though. Most cancer survivors are not in college, because it is so hard for them. Those that are, are usually in social work, nursing, or business. People drop out of engineering, and they don't have good excuses. I'm finishing my 4th year, and I've made it, chemobrain and all. I guess I should be proud of myself. But for some reason I'm not.
In our side effects group, it was a super talented group of people. Successful business people, actors, singers, directors...everyone had their dreams plucked from them. Last weekend, my sister and I stumbled upon a strings studio. We went in, and I played a violin there. I played one of the most basic concertos I ever learned- Vivaldi's A Minor. Rachel put a 10-second video on snapchat. Monday, my friend said "Jen you shredded on the violin!" He was shocked that I could play, and thought it sounded really good. I realized my college friends don't know who I was pre-cancer. They know I play keyboard at church, but they don't know that i was a choir pianist, and few know I even play violin, much less the level I was at. It was hard. I feel like I keep making excuses for who I am now, because I feel like one day the girl I used to be will come back, with all her studiousness and musicality. I have to realize that I am who I am now. I'm a different person. Sometimes I hate this new person, because of all the limitations or pain I go through. But this is me. It's not easy to deal with this new me, but I don't have an option. I need to learn to accept myself, and my new normal.