Stephen Collins
Reflections of a stem cell recipient
In March 2003, I was diagnosed with a blood disorder called myelodysplasia, also known as myelodysplastic syndrome (MDS). By December, despite getting some treatment, the MDS had progressed to a point where part of it converted to leukemia, which sometimes happens. I have been treated primarily at Dana-Farber. I was hospitalized in the spring of 2004 at Brigham and Women's Hospital, where Dana-Farber inpatients are sent, in order to receive a stem cell transplant.
Although I began to recover, the transplant ultimately did not "take hold," and in seven or eight months I started to relapse. Between March and May of 2005, I returned for two hospitalizations and a second stem cell transplant. So far, the recovery from this procedure has gone well and is showing some promise.
Below are some observations, recollections, and reflections that have accompanied these life-changing events. Some are sobering, others humorous, but all are part of the range of experiences and emotions that we all must go through when we (or our loved ones) find ourselves in this position.
A star is born
I was the 1,000th stem cell transplant recipient from an unrelated donor serviced by Dana-Farber. This was a significant achievement, because not many cancer centers had reached this level.
Why me?
Why not? I was 59 when I got the MDS diagnosis. I've had a good run. Some people don't live nearly that long. We aren't born with a lifetime guarantee, or rather we are, but it's not the same one for everybody. Is it fair that some people seem to have more than their share of problems while others don't? Is life fair? No, and no.
I get the easy part
I've always felt that I, as the patient, have the easiest role to play in all this. If my wife or daughter were going through this crisis, I would be frantic trying to imagine what it was like, and worrying about what was going to happen next. As the patient, I am spared all of this speculation because I'm living it instead. I'm the one who gets the chemo, transfusions, needles, chest X-rays, meds, CT scans, biopsies, good news, and bad. In a weird sort of way, there's a certain level of comfort in all of this, at least for me. Besides, I'm the oldest of the three of us in the family and, since we don't live forever, I should be the first one to go. But let's wait a little while if we can.
I got pretty good at deciding what I'd need and wouldn't need when I went to the hospital. I brought my sense of humor and some patience, but left my dignity at the door. The sights, sounds, smells, and schedule of a hospital, not to mention the skimpy gown you have to wear, are not compatible with dignity. I brought reading material, music, a laptop, and a phone card. Finally, a patient should bring his own, how shall I say it, "bathroom tissue." It's bound to be softer than anything you'll find on the inside. You can thank me later.
The show
During one of my first hospitalizations, I had a bed facing a wall with a mirror. One day, with nothing better to do, I realized that I could raise my arms high enough so that just my fingers showed in the mirror, creating sort of a stage. I played some rock-and-roll and started to move my fingers around in sync with the music, sort of like finger puppets without the puppets. When the intern made her visit, I showed her. She was interested; maybe the team would want to see this later when they came by on rounds, she said. Just in case, I selected the perfect oldie ("Good Lovin'" by the Young Rascals) and the perfect medical lyric ("You've got the fever, yeah, yeah, I've got the cure!"). About mid-morning, the team arrived and wanted to see the show. I gave them an abbreviated demonstration as they all crouched down and stared up at the mirror to get the full "stage" effect. I'll never forget that scene as long as I live.
My donors
Since I was diagnosed with MDS and then leukemia, I have received about 50 units of red blood cells and about a dozen units of platelets. Isn't that an unbelievable quantity? I'm so thankful for the many individuals who are willing to donate blood and platelets whenever they can.
And, what do I say about someone who may have given me my life back? I have been very fortunate that two donors were found who were a sufficient match to qualify me for a stem cell transplant. The doctors told me that my stem cell "profile" was relatively common, making it easier to look for potential matches within the international bone marrow registry. It was one of the few times that I was happy to be considered ordinary. It only takes a mouth swab to get into the bone marrow registry, and a commitment to come forward (if healthy) when called upon. Many insurance companies will cover the processing costs.
Despite its name, and unlike an organ transplant, a stem cell transplant is non-surgical in nature and more closely resembles a blood transfusion. When the big day arrived, a nurse came in and hung the bag of cells on my IV pole, and I lay there and watched what might be my new life drip into me. One of the transplant doctors came by to check on me. "Happy birthday," he said. Two days later, I went home.
What now?
I've heard veterans of Vietnam and more recent conflicts say that once they got home safely, there was a feeling that the rest of their life was a bonus. I guess I sort of feel the same way. I try to live my life as normally as possible, but there's no question that I'm different and, to a degree, I'm now on borrowed time. We all are really, but some of us just happen to have a little more information than others about what might lie ahead. This is not necessarily a bad thing.
The future? If I continue to recover, it will be good to get back to a regular work schedule for a change. A little foreign travel would also be nice, but I have no plans to climb Mt. Everest or race down the Amazon. Paris or Rome would be more like it. In the end, I've always been a person who had found satisfaction in what most people consider very simple pleasures, like sports, music, and the companionship of family and friends. I doubt that this will change much now.
Whatever happens, you can be sure that I'll be trying not to get too far ahead of myself and to take it one day at a time. Wish me luck.
Adapted with Permission from The Offering, UMass Lowell's Annual Literary Magazine, Spring, 2006.
