"I am somebody with cancer and I am somebody without cancer."
I became a survivor when I was diagnosed with Ewing's sarcoma in December of 1999.
I went down to New York for treatment and started in January of 2000. Treatment went through September of 2000 with seven rounds of high-dose chemo and surgery. The tumor was in my leg, in the tibia. I spent about four months at home afterward, September through December, recovering with physical therapy. I was a senior in college when I was diagnosed and only had one semester left. I went back to school in January of 2001 and was always tired, always bruising, and always catching everything that was going around. Because of the high-dose chemo that I got, I kept going in for tests, but the doctors just kept saying, "Your bone marrow is tired. It'll start working. It's just working slowly." Finally, I went in for a bone-marrow biopsy in April of 2001 and they found the secondary myelodysplastic syndrome, which is one of the precursors to leukemia. I said to them, "If there is anything I can be doing from now until May when I graduate, I'll do it, but otherwise, leave me alone. I want to go back to school." I knew that the search for a bone-marrow donor could be long and drawn out. They said that was fine. So I went back and graduated from college in May of 2001. I started chemo again in June or July to get the disease back into remission, because it had started to progress. I was home for a couple of weeks and they found a perfect donor match for me. All they told me was that he was young and male. I found out later he's from St. Louis, but I haven't met him yet. I underwent the bone-marrow transplant in August of 2001, was in the hospital for three months, spent the nine months afterward going in for tests and medications and anti-rejection and anti-everything drugs, and finally in June of 2002, they said, "Okay. You're set. Go do your thing." So I went up to graduate school at Middlebury College for the summer and moved to Boston in September of 2002. I started working for a public-health-education nonprofit where we do mostly HIV-prevention research, and interventions and violence prevention.
Then last year I went to the I'm Too Young for This symposium that was held at MIT. It was the first time I even found out that there were other young-adult survivors, because in a hospital like the one I was treated in, sadly, nobody ever really left. All of my friends had passed away. I didn't have any people that I went through treatment with who made it long enough to go through the survivorship journey with me. Since I finished, I had been struggling with my appearance and scars, all the issues that are not the day-to-day chemo stuff and therefore didn't feel legitimate. But I went to that conference and saw that there was a whole community of people like me out there. The keynote speaker talked about how he gets approached by so many survivors who say, "I need to quit my job. I don't know what I want to do, but this is where I want to be." And I realized that's exactly how I felt. So my friend Bridget and I started talking about organizing a benefit concert for young-adult survivors to help them transition out of treatment and into the "real world." We started doing research and found that there aren't any organizations designed to provide educational scholarships, professional training, and advice on rent, loans, car payments, grocery and residual medical bills for young-adult survivors. But instead of being discouraged and giving up completely, we gave up the idea of the benefit concert and just decided to go full steam ahead and create our own organization. It's called Surviving and Moving Forward. It's called the SAM Fund for young adult survivors of cancer. I feel uncomfortable saying, "I'm Sam, and this is the SAM Fund," because though it did start obviously from my own story and experiences, the acronym comes from Surviving and Moving Forward. We want to help people who are no longer receiving treatment and feel abandoned. When I was going through treatment, all the doctors and nurses were focused on getting me to the day when they would tell me that I didn't have to come back anymore. Obviously, that's a huge and important day, but then I felt that people sort of forgot about me. Being a young adult who had to go out and fend for myself, and decide either to go back to school or not, or to get a job and start paying rent, was incredibly overwhelming. It's just hard. It's hard for anybody right out of college. But then you add $20,000 in medical bills to it and it makes it even harder. And so what we decided to do was create an organization just to provide financial assistance in that transitional time.
So that's what I've been doing for the last nine months. It's been the best thing in my own cancer journey because it's given me a way to reclaim control over the whole thing, to have cancer in my life because I chose to put it there, not the other way around. It's been really empowering and really exciting. I've met some amazing people. We've already started partnering with other organizations. We've done some fund-raising. We're working on a whole bunch of stuff. I'm actually about to go part-time at my day job, so that I can run the fund two days a week. I hope to make it full-time eventually. It's been interesting to see how all of the pieces are now coming into place. I have this incredible energy and excitement to get this fund off the ground and hand out the first check to a survivor who needs it. For that, I am very grateful. I just decided I'm going to start an MBA program for people involved with organizations or who want to be involved with organizations with a good social mission. Cancer isn't who I am, but it is where I've been. It's a part of who I am. And to now be able to incorporate that into a career and into a positive presence in my life makes me feel grateful.
I'm monitored long-term by an endocrinologist. When I saw him for the first time, his nurses sat with me, listed all of the drugs I had been on--many I had forgotten about--and said, "Here's the risk of this disease. Here's the risk of this recurrence. You're at elevated risk for this. There's a good chance you're going to get this." I could have heart problems, kidney problems, liver problems, thyroid problems. Basically anything in my body can be affected long-term by the chemo, especially because I had five drugs in very high doses the first time around. On top of that, I had three or four drugs in very high doses the second time, plus all the radiation from the X-rays. I never had standard radiation, but all the X-rays and the CAT scans add risks to everything. 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. Other than that, I wanted to be left alone. I don't want to hear it every year. I don't want to hear what my risks are, because if there's nothing I can do about them anyway, then I don't want to live in fear of them.
I have a multitude of scars from all the biopsies and the catheter in my chest. The biggest scar runs from just above my knee to my ankle. That's the worst part for me physically. I'm lucky in that I can pretty much still do what I want, though I can't do anything high-impact. I can't run. I can't do anything that's going to stress that bone. The scar is not a typical scar because they had to do a skin graft. I'm very aware of it, and how different my skin looks there. To me it's a reminder. On some days, it's a positive reminder of where I've been and where I am, how hard I've worked to just be able to walk. But on other days, it's a reminder of the fact that I had cancer, which is still a really hard thing to process sometimes. It's a reminder that I have limitations that I didn't have before. And that's been really hard. But other than that, I've gotten used to telling the difference between what the doctors say I can't do and what they say I shouldn't do. There are some things that they say I probably wouldn't ever be able to do again and it's just my nature to go and prove them wrong.
I hope my orthopedic surgeon doesn't see this because he'd kill me if he knew I was saying this. But anyway, when I was coming out of surgery, he sat me down and went through this big long list of things that I might not be able to do again. Among those things he told me that I couldn't do were running and playing tennis. At first I got really upset about it and then I remembered that I hate to run, so it was really no great loss. But when he said that I couldn't play tennis, I got so upset. It's the one sport that I love and have always played. And when the doctor left, this fellow in the room, who was just wonderful, said, "You can't play competitively but you can still play. Just let it bounce twice before your return. It'll be fine." I know I can't run, because it'll break the bone. But I played tennis last summer with my mom, and I let the ball bounce twice. I didn't run after anything, but, you know, even though I wouldn't be able to play competitively again, it was fine just to play that little bit. Just being on the court and having a tennis racket in my hand after hearing his voice say, "You'll never be able to do it again," felt awesome.
One of the hardest things about moving back to Boston and starting work was that people didn't know me. They asked me all the standard questions: Where was I from? What did I do before I moved here? And I didn't want to just announce that I had come from a bone-marrow transplant and that I hadn't done anything before this job because I wasn't able to work. I didn't want cancer to be the first thing that people knew about me. So I made stuff up. I was very self-conscious about it, because I had gone through a lot of physical therapy and still walked with a little bit of a limp. My hair was still very, very short. I felt like the cancer identified me before I was able to identify myself, and that when people saw me they thought, "Oh, she had cancer." So for a while I just avoided meeting new people. I avoided going out. I stayed within my comfort zone of friends and family. I think the turning point was when I founded the SAM Fund. I'm so aware of what it's brought to my life in terms of my own recovery process, and I'm excited to tell people about that. My cancer experience sort of becomes the background of the story, where the Fund is now the focus. It's been really gratifying to turn it around that way, because instead of meeting someone new and saying, "Yeah, I had cancer. Let's talk about how much that sucked," it can be, "I had cancer and here's what I'm doing about it. Here's what I'm doing with it." It's a much different experience now than it was a year ago in terms of telling people, which is also why it was such a big deal when I went to that conference and realized that there was a whole community of people out there that I didn't have to worry about those things with. I went out to Montana last year for a Young Adult Survivors conference at Camp Moak-A-Dream, and it was the same thing. Cancer is a given, so you can go from there. It was actually very interesting for me to try and figure out who I was without the cancer as a defining characteristic, because the cancer had been the biggest part of my life for the last three years. Once I didn't have to tell people I had cancer, for a little while I didn't know what to tell people at all. I didn't want people to think of me as the girl who had cancer, but that's how I'd started to think about myself when I didn't have anything else going on in my life besides doctor's appointments, physical therapy, and that kind of stuff. So it was really interesting for me to figure out who I was without all of that. That's why Boston's such a great place to be. There are so many young people just out of college who are still figuring themselves out. I feel like even though I'm twenty-six years old, I'm very much like those kids just out of college. I'm in that transitional period, where, you know, I get to call the shots and I get to decide what makes me happy and where I want to be. It's been strange being a few years behind all of my friends who have already gone through making some of those decisions. But I think it took coming into contact with so many young-adult survivors for me to realize that I am somebody with cancer and I am somebody without cancer. I just had to figure out who that person was.
I've been pretty lucky with financial matters and employment and benefits. But it is one of the biggest issues that we deal with at the Fund. We're working on providing for residual medical bills and all that kind of stuff that some people deal with, but I never had to. My insurance covered 100 percent of my treatment, and what they didn't cover as far as out-of-pocket expenses, my family covered. When I got my job, I interviewed over the phone, so I never had to meet anyone face-to-face and explain why I walked with a limp. They didn't see me until my first day of work.
I work for a nonprofit organization that has excellent benefits. And I've never been questioned about it. I got health insurance. I had my choice of plans. My co-pay is the same as anybody else's. I have a primary-care physician who is amazing and will write me a referral for any doctor I want to see. Everything so far has just fallen into place. I've been really lucky with that. My future goal of working for the Fund full-time raises the issue of health insurance. One of our trustees, who owns his own insurance company, said that he would set it up. Even if it's a little bit more expensive than getting a group plan through a different company, I don't have to worry that I'll ever be without insurance. I'm totally aware of what a huge luxury that is. I never take it for granted. I think it will probably always be my first consideration when looking for a new job or deciding whether to go back to school. Where some people have complete freedom to take a chance and do whatever they want to do, regardless of what the health-insurance situation might be, that'll never be an option for me. But I suppose it's just one of the things you learn to work around.From the Hardcover edition.
Excerpted from Live Strong by Lance Armstrong Foundation. Copyright © 2005 by The Lance Armstrong Foundation. Excerpted by permission of Harmony, a division of Random House LLC. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.