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I became a survivor when I was diagnosed with Ewing’s sarcoma in December of 1999.
I was a senior when I was diagnosed, so I had one semester left. My treatment started in January and went through September of 2000. I had seven rounds of high-dose chemo, and surgery on my leg. I went back to school in January of 2001 and was always tired, bruising, catching everything that was going around. They kept saying, “Your bone marrow is tired. It’ll start working.” Finally, I went in for a bone marrow biopsy in April of 2001, and they found the secondary myelodysplastic syndrome, a precursor to leukemia.
I started chemo again because the disease had started to progress, and then they found a perfect match for me, an unrelated match. After three months in the hospital for the bone marrow transplant, I spent nine months doing tests, medications, anti-rejection and anti-everything drugs. Finally in June of 2002, they said, “Okay. Go do your thing.” I moved to Boston that September.
Last year, my friend Bridget and I went to the I’m Too Young for This symposium at MIT. It was the first time that I even found out that there were other young adult survivors. All of my friends had passed away. I didn’t have any people that I could go through the survivorship journey with. I had been struggling with my appearance, scars and all the stuff that’s not the day-to-day chemo stuff, but I didn’t think it was legitimate. I went to that conference and saw that there’s a whole community out there. I think coming into contact with so many young adult survivors was the first time that I realized that I am somebody without cancer. I just had to figure out who that was.
Bridget and I decided to create our own organization for young adult survivors to help them transition out of treatment and into the real world. It’s called Surviving and Moving Forward-- the SAMFund for young adult survivors of cancer. We’ll provide financial assistance for educational scholarships, professional training, rent and loans for car payments, groceries and also residual medical bills. It has been the best thing in my own cancer journey, because it gives me a way to reclaim control over the whole thing and to have cancer in my life because I choose to put it there.
One of the hardest things for me, in moving back to Boston and starting work, was that people asked me all the standard questions: where I was from and what I did before. I didn’t want cancer to be the first thing that people knew about me, so I made stuff up. I avoided meeting new people. I stayed within my comfort zone with my friends and my family. The turning point was when I founded the SAMFund. I’m so aware of what it’s brought to my life that I’m excited to tell people about it. My cancer experience becomes the background, where the Fund is now the focus. Instead of meeting someone new and saying, “I had cancer, and let’s talk about how much that sucked,” it has been, “I had cancer and here’s what I’m doing with it.”
I’m followed by a long-term endocrinologist. The first visit, they listed all of the drugs and were like, “Here’s the risk of this. You’re at elevated risk for this. There’s a good chance you’re gonna get this.” You can have heart problems, kidney problems, liver problems, thyroid problems. Anything that’s in there can be affected.
I told them that I just wanted to know what I should look for, what I can do to prevent it, what to do if I notice any of the warning signs, and other than that, leave me alone. I know it in my head. If there’s nothing I can do about it, then I don’t want to live in that.
The physical part fades in my memory, because that was never the worst part of it for me, as horrible as it was. I think I knew that it would be temporary. I’m angry that there are things that I have to think about now that nobody else does. I have to be careful of how many pounds I lift, because it might stress my heart. I have to be careful of walking too fast, because I may get a shin splint or I may hurt my leg. I don’t have total and complete freedom to do anything I want to do. I’m 26. Everyone who’s my age thinks they’re invincible, and I’m not able to do that. I have limitations that I’ve never had before.
I’ve gotten used to telling the difference between what they say I can’t do and what I shouldn’t do. I can’t do anything high impact that’s gonna stress that bone. My orthopedic surgeon sat me down and said, “You can’t run. You can’t play tennis. You won’t ever be able to do those things again.” When he said that I couldn’t play tennis, I got so upset. That’s the one sport that I love. When he left, there was a fellow in the room, who was just wonderful, and she said, “You can’t play competitively, but just let it bounce twice. It’ll be fine.” I played tennis last summer with my mom, and I let the ball bounce twice. Just being on the court and having a racket in my hand, while I had his voice in my head saying, “You’ll never be able to do it again”-- it was awesome. It’s just in my nature to go and prove them wrong.
What makes me angry is that cancer totally disrupted my life at a point where it shouldn’t have. Not that anyone that goes through it deserves it, but I think that it’s a lot easier at a different stage in life. I was in the middle of my senior year in college. I was in this totally up-in-the-air transitional time where I spent so long focusing on getting better that I didn’t think about what came next. I was lucky that things fell into place.
I think another thing that makes me angry is that all but three of the people I met in my three years of treatment have passed away. I made very, very solid friendships and bonds that I don’t have with anybody else, just because of what we were going through. I think to be 26 years old and to have lost 13 or 14 people that I would honestly call friends -- and that’s not even counting people who are just acquaintances -- that makes me really angry. It makes me angry that they got gypped out of living a life that lasted more than 20 years.
I guess it lends itself to the survivor’s guilt that I deal with every day, which is a huge side effect that they don’t tell you about -- that I’m here and that they’re not here. It’s something that I shouldn’t have to deal with, not at this age. Mostly, I’m just sad that my friends aren’t able to live out their futures and their dreams. I think it brings me back to the Fund again. On a very personal level, it allows me to keep my friends with me. Their memories are right here in the front of my brain all the time.
Therapy is the best thing in the world ever. I’d probably get a lot of it out if I sat and talked to a wall, because it just helps to say it out loud. But to have a totally objective person who questions me, it really gets right to the heart of things. To be able to sort things out with somebody and make sense of it or make sense of the fact that you can’t make sense of it, it’s just been the best thing. I’d tell anybody to go.
The other thing that’s helped has been support groups. There aren’t that many young adult support groups, but I belong to a group for transplant survivors. One of the worst things I think that young adults deal with is isolation. You feel like you’re the only person in the world that’s going through this. Just knowing that other people have been there, even though they don’t have the answers, makes a huge difference.
To me, survivorship means finding a place for all of it in my life. It doesn’t necessarily mean starting an organization or being an active, loud advocate for young adults, but just reconciling the fact that you had cancer and fitting it in somewhere. I don’t know if it’s necessarily accepting it, because I don’t know if I’ll ever accept it, or come to terms with it. I still don’t even know if I know what that means. But survivorship is finding a place for it, growing from it and taking from it what you can. Because at the end of the day, the fact is that I had cancer, and nothing I’m gonna do is ever gonna erase cancer from my life. I don’t believe that there’s some higher power dictating what happens to each one of us, but I think that you’re dealt a hand and you have to play it in the best way you can. That’s survivorship.
My name is Sam Eisenstein. I’m 26, and I’m a five-year cancer survivor.