- Aaron’s StoryAbout two days before Thanksgiving 2011, I got a call from my surgeon saying that I had Hodgkin’s lymphoma. It was a whirlwind trying to figure out exactly what my diagnosis meant andRead Blog
I became a cancer survivor on December 29, 1999, when I was diagnosed with CML, chronic myelogenous leukemia.
I guess for some cancers, you can clearly delineate when the treatment is over, but for many others, you can’t. I would definitely define myself as still in treatment. Since the transplant four years ago, I continue to be treated for side effects; in particular, graft vs. host disease, which requires me to be on heavy immunosuppressants. Graft vs. host disease is for people who’ve received transplants from other people -- my new immune system came from my sister. The graft’s immune system is viewing my body as being foreign and attacking it. Obviously, my sister is getting back at me for all the things I did to her as a child.
Oftentimes it burns itself out after the host and the graft get to know each other a little bit better and find an equilibrium. But in many cases it doesn’t, and it lingers in some form or fashion and requires medication. So in addition to being weaker just because it’s not my original immune system, it’s also being suppressed. There’s a higher likelihood that I’ll get sick, so I have to be hyper-vigilant. A cold can be disastrous for me. That poses several challenges. How do you do normal things and yet maintain distance between yourself and the dangers that lurk around every corner?
In the aggregate, living a normal life is an incredibly risky proposition for me. Hygiene and being careful about being exposed to germs or people who are sick is incredibly important because I have a suppressed immune system. As a result, basically every action I take throughout the day, I go through a series of checks and balances in my own head as to whether the risk is worth the reward. Like going to the movies. Somebody two rows behind me is coughing. Do I get up and move or do I stay? That actually can preoccupy me for a half hour. Just the simple act of shaking somebody’s hand is actually a danger because the biggest transfer of germs is through hand shaking. So I’m constantly fighting against social constructs and social norms of, it’s okay to drink out of somebody else’s glass, it’s okay to shake hands. I’m constantly washing my hands or I’m carrying around antibacterial things.
I’ve gone through times where I do things and then I get sick, and so then I pull back and say, “Well, I’m going to be more careful.” But then that’s not good enough, because I’m not experiencing life. And so then I go out, and then I get sick again, and then I pull back. It’s this constant back and forth, which is emotionally draining and difficult. It’s constantly seeking the reward of living life. That’s the point of all of this. Why go through everything that I’ve gone through if life isn’t worth it? And life is definitely worth it.
I try and fold as much into my life as I can. The last four years have really been a roller coaster. There have been times where I’ve felt pretty good and I’ve acquired a lot of responsibilities, and then gotten sick and had to give those up. So I work part-time. I’m not back to doing the work that I did before or that I want to do. I do go out to dinner and do hang out with friends and have started dating again. That’s sporadic, because it’s tough. But all of those desires still remain, definitely, and hope that one day those things will return is part of what drives me. I think hope is what drives us all. Hope is definitely what drives me. Without hope, what do you have?
One of the biggest difficulties is trying not to be a hypochondriac and yet, at the same time, to be incredibly sensitive to what your body is telling you. It’s a very difficult balancing act. After four years, I’ve learned how to walk that line pretty well. When something comes up, if it stays around for a while or if it’s a different sensation than I’ve had in the past, I’ll send my doctor an email or give him a call. If it’s something that I can recognize, then I’ll deal with it myself. But I won’t self-medicate in the sense of anything more than like Tylenol. That’s not a bright thing to do.
I try and keep as even a keel as possible, which is easy to say, but very difficult to do. Really the mantra that I have is, hope for the best, but manage for something short of the best. If good things happen, then you’ll be pleasantly surprised. But when you have setbacks, as you undoubtedly will, you’re able to manage those a little bit better. I try to maximize each day and do what I want to do that day. Sometimes I succeed, and sometimes I fail, but that’s the goal. The hope is that, at some point in the future, the graft vs. host will be gone and I will be back to something resembling what I once was. But if not, then whatever I am, I want that to be the best that it can be.
I was told prior to transplant, in essence, “Give us a year, and we’ll give you back your life, indistinguishable from the life you were leading before.” Now that’s a pretty powerful statement and one that probably shouldn’t have been made. If I had been told everything that was gonna happen to me, I don’t know if I would have done the transplant. I probably would have, but I would have thought a lot longer and a lot harder, especially given the emergence of Gleevec, which could have had an impact for me. It was certainly being discussed at the time, but it wasn’t commercially available. I think there’s a good reason why doctors don’t give you the full story, but I think at times they don’t give you enough of a story.
I have found that you have to be incredibly aggressive and you have to be stubborn and you have to be obnoxious at times. Because there’s nobody out there who cares about your life more than you do. If you don’t want to be pushy or say something wrong, you’re the one ultimately who’s gonna suffer the consequences. And you can’t trust others, whether it be your doctor or the institution you’re being treated at, to necessarily do exactly what needs to be done. If you’re done with treatment and you move cities, make sure the right information gets transferred. At the end of the day, you have to be the one who is the CEO of your care.
I was 27 when I was diagnosed, single and living in New York City, working and playing hard, doing all the things that I wanted to be doing and planning for my life. I turned 30 a year ago. What did I expect to be when I was 30? I was gonna be married. I was gonna have a kid. I was gonna have a house. I was gonna be on this career path. All of my friends were sort of going through this reevaluation of, “Wow, where am I in life, and what is it that I want?” And I have all this other stuff on top of that, which is, am I gonna be around? Am I gonna be able to function normally? What is normal anymore?
There are emotional issues associated with having cancer, period, but I think especially so as a young adult because you feel invincible. You feel like your whole life is laid out in front of you, and you don’t expect something like this to come into your life. It changes everything. From the very obvious -- I don’t look the same as I did -- to just a complete change in what you can and can’t do in the world. Those changes impact your life, yet how do you still retain the hope and the same desires that you had before, given the new reality associated with having had cancer?
I think that there’s a tremendous need and desire on the part of every human, and certainly for young adults with cancer, to have emotional connections and the understanding and affection and physical relationships and everything that makes life worth living in a lot of ways. But how do you conduct a normal relationship when you’re concerned about catching a cold? How do you show up on a first date with seventeen bags of luggage, saying, “Here’s all my issues. Want to have dinner?” Do you only associate with or do you only date people who’ve had cancer, too? How do you bring it up to somebody who hasn’t? Is it fair to them to bring all of this baggage along with you? Is it fair to them to say, “Yeah, I’m a good guy, but, you know, Bob over there is a good guy, too, and he hasn’t had a bone marrow transplant. Why not go out with him?”
And at the time I was diagnosed anyway, fertility was not something that was first and foremost in the discussions. I know that there’s been a big push to make that much more upfront for both men and women. But it was much more, “Let’s get you straight on chemo, you know, right away,” and no real discussion of, “Wait a second, before we do that, let’s think about the future and what the effects are.” Fortunately, my family was very involved and asked important questions and we were able to--to store some sperm before the chemo started, but not--not as much as if we had really been put on the correct regimen. So I think that that is -- it’s definitely an issue. Fertility is definitely an issue and needs to be at the forefront of the initial diagnosis of, what do you do once you’re diagnosed.
I don’t think that I’m damaged goods. Everybody has their own challenges to face. Having graft vs. host disease and having had a bone marrow transplant is not damage, it’s just my particular journey, and it’s different in some negative ways. To be someone who’s had cancer is, you know, it’s life. We’re all survivors, I guess. Not just people with cancer, but anyone who fights anything or anyone who gets up every morning. I’m still the same person in many ways, but I’m not. I look differently. I feel differently. I think a little differently. But you know what? After four years without cancer, I would look differently, I would think a little differently, and I would feel a little differently too.
I hear people say, “Being diagnosed with cancer was the best thing that ever happened to me.” I want to punch those people. It’s a terrible thing for the individual. It’s a terrible thing for loved ones and family members and friends who have to see you or me go through the treatment, go through the agony, go through the angst, go through the fear.
Cancer can change your perspective. My perspective is different, no doubt. And the perspective of my family and my friends is different because of my experience. But perspective can change for a whole host of things. It shouldn’t take cancer to make you understand what’s important. Cancer in no way, shape, or form is good. What is good is fighting through it and persevering and surviving and living and loving and doing all of those things. But that has less to do with cancer and more to do about life and the individual.
Cancer means something different to everyone. Cancer can mean to some person salvation, a second chance, a blessing. To others, it can mean a curse. And I think that the bond that ties all of us together is the desire to persevere and get beyond it. Some people want to just deal with their disease, get it over with and never think about it again. Other people want to talk about it and give back, and that’s great, too. But the point is that it’s very individualized, and whatever works for that person is really all that matters, as long as the drive and desire to survive and persevere is there, and quite frankly, to live strong, which is really what it’s all about.
My name is Greg Ferris, I’m 31 years old, and I’m fighting leukemia.