Reflections of a Stem Cell Recipient
By J. Stephen Collins
No Substitute for Experience
This all started as a result of a routine physical with my internist at Newton-Wellesley Hospital (N-W) in January 2003. He noticed a little anemia in my blood work, wisely recommended a re-check (worse), and referred me to a hematologist/oncologist at N-W for a bone marrow biopsy (needle into the bone) and the eventual diagnosis. This is the same superb internist who, in my 1996 annual physical, detected via the traditional and much-maligned rectal exam (not the newer PSA test, which was normal) a possible irregularity in my prostate gland, leading to successful prostate cancer surgery later that year. Memo to self: stop scheduling those goddamn physicals. They are going to kill you! On the other hand .
Background
In March 2003, I was diagnosed with a blood disorder called myelodysplasia, also known as myelo dysplastic syndrome (MDS). MDS affects the ability of the bone marrow to produce sufficient mature blood cells to perform their normal expected functions: carrying oxygen (red), fighting infection (white), and aiding clotting (platelets). By December 2003, despite my 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 the Dana Farber Cancer Institute (DFCI) in Boston. Between December 2003 and April 2004, I was hospitalized four times, two planned and two unplanned, at Brigham and Women's Hospital (BWH), the teaching hospital where DFCI inpatients are sent, in order to clear up some complications and eventually receive a stem cell transplant. The total length of the four hospitalizations was 85 days (but who's counting?). 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 to DFCI for two planned hospitalizations and a second stem cell transplant, this time spending a total of 45 days (but who's counting?). 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, some humorous, but all are part of the range of experiences and emotions that we all must go through when we (or one of our loved ones) find ourselves in this position.
Why Me?
Why not? I was 59 years old 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.
One and 1A
When I started my early treatment at N-W Hospital, my hematologist/oncologist there referred me to a noted colleague at DFCI who could offer a second opinion on things and perhaps provide some additional resources should they become necessary later (little did we know). We had three or four appointments with him during the last half of 2003 before everything hit the fan. He was ably assisted by his "fellow," who herself was an experienced physician about to finish up a three-year fellowship in this specialty. Within our family, we referred to them by their correct names, but to outsiders it was usually simpler to call them 1 and 1A (more respectful than 1 and 2, I thought). They were an excellent team. One (1) is world-renowned in this field and appears to spend an average month trying to juggle a schedule that runs between family activities and some international medical conference. When he's on site at DFCI, he can usually be seen on his cell phone moving purposefully through the building and being chased by colleagues or staff. He operates at an intellectual level and pace that I can barely comprehend, much less achieve.
Before my appointments, my wife and I would see him outside the examination room being briefed by 1A on my situation. He would then walk briskly into the room, make some suggestions on possible courses of action, discuss some clinical trials that might help, ask us if we had any questions, and answer them. He talked at nearly superhuman speed, which was not good given my moderate hearing problems. Yet, there was a real sense of caring and warmth in his approach to a patient and a very positive and upbeat style to his delivery. I loved that about him. Once he left the room, 1A stayed behind to translate into English what had just happened. By the time we left, we knew where we stood. We were (and are) lucky to have them and their colleagues on our side.
Checking In
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. I didn't need that. 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 some reading material, one or more sources of news/music (radio, CD player), several types of music (for my many moods), and a laptop. I eventually brought my own phone from home (to facilitate speed dialing) and a phone card (to minimize long-distance costs). 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.
Passing the Time
This task is different for everyone. Because of infection issues, I almost always had a private room, which I liked. The room was decent enough in size; the problem was that I was in it for 23 hours each day, the exception being a daily walk or two in the corridor or an occasional procedure on another floor. This is no place for a claustrophobic. You must make yourself and your world a lot smaller, and function sanely in this environment for as long as it takes. It's not easy.
I did whatever worked for me. Sometimes I'd go for days without reading a thing; then, I couldn't put a book down. At times, one or more types of music were my salvation; at other times, I wasn't interested. The TV stations were both random and inadequate, but I welcomed the TV, especially at night. There was also hospital time and there was my time, and the two were not very similar. I tried to keep to the schedule that I was comfortable with outside. I requested a later delivery for most of my meals. Sometimes, it even worked. In the morning, I kept my lights off and covered my head with a pillow to sleep longer, hoping that at least some of my usual visitors from the staff would come back later. Sometimes that worked, too.
Above all, I knew that there would be many ups and downs, and made an effort not to get too far ahead of myself. I was already pretty good at that anyway, but I became an expert and so did my family. If you can't control it, try (I say, try) not to worry about it.
The Show
During one of my first hospitalizations, I had a bed directly 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 the next morning, I showed her and indicated that she might want to suggest the technique to her mentally-disturbed patients. 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 Rascals) and the perfect medical lyric ("You've got the fever, yeah, yeah, I've got the cure!").
About mid-morning, the team arrived. Did they want to examine me, I asked? Yes, they said, but first they wanted to see the show. I snapped into action, giving them an abbreviated demonstration. What a sight! Here we had about $2 million worth of medical talent, including a distinguished 6' 3" attending physician, all crouching down and staring up at the mirror so they could get the full "stage" effect. I'll never forget that scene as long as I live.
No Visitors
I really didn't want any visitors except my wife and daughter. They were the only ones with enough love and patience to put up with me. My daughter was working in New York at the time, but came when she could. My wife came nearly every day, unless there was a real time problem or I had talked her into taking a break. Except for two visits, I had no other outside visitors for the 130 total days I was hospitalized and I liked it that way. (Others may not.) Over and above infection issues, I simply couldn't control the agenda: how would I feel?; would there be staff in the room trying to examine me?; would I be out of the room getting an X-ray?; etc. There were enough (perhaps too many) hospital personnel coming in and out of the room as it was, so I certainly wasn't lonely. When it was quiet, I found it to be a wonderful time to get comfortable with myself and my thoughts, something we rarely take time to do, rather than having to make small talk. It was a very peaceful experience in its own way.
Dedication
Once you move from putting the leukemia into remission to the actual transplant, you get transferred over to the care of another hematologist/oncologist who specializes in transplants. I've been very fortunate to have an excellent doctor for this; we'll call him V. We first met V when he was referred by 1 and 1A and arrived in my room one night about 6:30 pm during my very first hospitalization. He spent about 25 minutes explaining the pros and cons of stem cell transplants from unrelated donors (my brother was tested, but was not a match) and a couple of other options that, to us, had some good points but were not as attractive. He seemed to have all the time in the world for us, even at that hour. V has been my main contact during both transplant cycles. He's another dynamo, doing as much in a day as I do in three weeks, but always with a smile and a gentle demeanor. One day, I emailed V for the first time from home with a routine question about my medication. He answered me in seven minutes. I was floored! Now, he hasn't always answered in seven minutes, but he has always been both timely and thorough, and wonderful to work with during this ordeal.
I Get the Easy Part
I've always felt that I, as the patient, have the easiest role to play in all of 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, the transfusions, the needles, the chest X-rays, the meds, the CAT scans, the biopsies, the good news, and the 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.
Pats Win! Pats Win!
It was February 2004 and Super Bowl Sunday had arrived. The New England Patriots had taken it one game at a time, just like I was taking it one day at a time, and they now had their chance at a second Super Bowl win, this time against Carolina. The estimable Dr. 1 had gone to one of the earlier playoff games in Foxboro, the sub-zero affair that had everyone talking at the time. He must have found the "off" switch on his cell phone that night. Anyway, the final game was on and I was ready with my official Patriots hat, a gift from a friend. I sweated out every play alone in my room; the floor was eerily quiet. When Adam Vinatieri's field goal cleared the uprights at the end of the game, I could hear cheers from the nurse's station and other rooms. What a finish! The only thing I regretted was not being able to join my friend K and several other cronies at his home, or more specifically, his expanded and winterized breezeway fondly known as Exhibition Hall. This time I had to settle for a few phone calls back and forth, but at least it gave me some contact with the outside world. Next year I'll be there in person, I thought. (And I was: New England 24, Philadelphia 21, February 2005.)
Worth Their Weight in Gold
Nurses. They are a patient's main point of entry into the bureaucracy of a hospital. They also try to rally you with some kindness and good care when you aren't at your best. Most of the nurses (and aides) I had were excellent and I really appreciate what they did for me. A few needed a tune-up of one kind or another, and I tried to make this very clear to them when necessary because I'm not shy about pointing out poor work, especially when the work is being done on me. (What does a child or an elderly person do in these situations? Good God!) The unions seem to take better care of nurses these days with respect to salary and benefits, but when it's being done correctly, it's still a job that most people wouldn't do at any price. Bless them all.
Dedication, Part 2
Before my first transplant, I developed a lung infection that had to be cleared up before we could proceed. To make sure that it was nothing more, an arthroscopic lung biopsy was ordered. Another adventure. Lucky me! About 7:30 pm the night before the surgery, the surgeon came to my room carrying a cake in a box. Let's call her Y. After I thanked her for the cake, she explained that she had bought it at lunch and was hoping to get home in time to celebrate the birthday of one of her children. She took all the time I needed, however, to explain what would be happening the next day and to make sure that I was comfortable with everything. (They eventually celebrated, but not that night.) Weeks later, during a routine follow-up appointment with V, I needed the biopsy stitches removed. V paged Y, and she happened to be available. Rather than inconveniencing me to go over to her building, she offered to come to where I was, arriving at the examination room about 5:30 pm. As she worked, I thanked her for the "house call" and told her how glad I was that we had been able to catch her so late in the day. "Oh, I just got out of surgery," she said. "I was supposed to be done at noon. I still have rounds to do." Let's hope there wasn't another birthday party waiting at home.
Chemo
I'd much rather have done without it. However, I have to say that the chemotherapy was not as bad as I had expected in preparation for either transplant, even though the nurse has to wear a protective gown while administering some of it, just in case it spills. I received a so-called "mini-transplant" both times, but this is somewhat of a misnomer. It's a very serious transplant but, unlike a full stem cell transplant or bone marrow transplant, it features a reduced intensity of chemo that is more easily tolerated by older patients. This procedure is now being used on some younger patients as well. The doctors do a pretty good job of controlling the nausea and other short-term side effects, but there are no guarantees. I had a few horrific days after receiving the chemo when all I could do was cling to the bed rails, but I know it could have been a lot worse.
A New Life
The transplant itself was somewhat anticlimactic in both cases. While I was being prepared in the hospital and put into remission over several weeks, the donor was asked to follow a parallel schedule designed to harvest the cells, bring them to the hospital (usually from another city or country) via courier, process them in the lab, and infuse them into me within hours of arrival. I can only imagine the amount of work that needed to be done by countless people behind the scenes (including contacting my insurance company, which has been wonderful) in order to accomplish all of this successfully. 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, just like the numerous bags of saline, chemo, blood, and other resources I'd been receiving all along. And I lay there and watched what might be my new life drip into me for 20-30 minutes. That was it! It was strange. A doctor from the transplant team came by to check on me during the first transplant. "Happy birthday," he said. Two days later, I went home (both times).
1A Back on the Case
When my first transplant ultimately failed and I relapsed, I was still seeing V regularly for follow-up at the DFCI clinic; he would, thankfully, be supervising the second attempt if they found another donor, which they did. First, however, it was time to get the leukemia into remission again and we were happy to find that 1A was our doctor (with 1 in more of a supporting role this time), having completed her fellowship and now beginning to see her own patients. She's warm and personable, but also very serious about her work. She expects nothing but the best from herself and won't tolerate anything less from those that work with her. Just the type of doctor you want when you're the patient. To preserve their sanity, doctors have to keep a certain amount of distance from patients, but after a while you get to know them pretty well. We love working with her.
Blood
Since I was first 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? There was no national emergency, no major tragedy, just one nearly invisible person in the "system," among many thousands nationwide, trying to get through risky periods until my own body was able to take over again. I'm so thankful for the many individuals who are willing to donate blood whenever they can. I used to donate on a fairly regular basis, in part because my father needed many transfusions before he passed away about 20 years ago. Now I rely on others. The best part of donating is that you are giving up a renewable resource, one that the body will replace in a matter of days. For those who are in good health and can spare a little time, I hope that blood donation becomes a habit. Like the TV commercial says, "Consider yourself asked."
Respect
One day, one of the other transplant physicians (they rotate) came by on rounds with his team to check on me. While they were there, I spilled some dry cereal flakes from my hospital table onto the floor. A nurse's aide was nearby and the attending physician asked her to come into the room. When she arrived, he said, "Can you get me something so I can clean up this mess?" She did, and he did. Excellent.
Down the Hall
During my hospitalization before the second transplant, I overheard a conversation about a young woman in her late 20's who was in a room down the hall. She had recently been married and had since contracted some kind of blood disorder (probably leukemia). So far, they hadn't been able to find a donor for her. Her new husband was desperately trying to run bone marrow drives on her behalf. This was a noble thing to do, and any one of us would have done the same, but these efforts were not likely to be directly successful. If there were millions of people in the international bone marrow registry, and they couldn't find one who was a sufficient match, what were the chances that one would be found in her neighborhood? There was probably a better chance that someone running a drive in Ohio or London would find a match for her. It's so easy to get into the bone marrow registry. Why don't we have more participation, particularly in the U.S. where our participation rate is well below what our population size would suggest? I never found out what happened to her. I hope she made it. Is it fair that there might be no donor for a 25-year-old woman in the prime of her life? In contrast, is it fair that two donors have been found for a 61-year-old man? No, and no.
(Sort of) Free At Last
At some point in the chemo portion of the hospital stay, the risk of infection was low enough that they let me go down to the BWH lobby to walk or sit, and basically affirm that there were still some people leading normal lives while I was climbing the walls upstairs. On one occasion, decked out in my robe, slippers, and mask, and wheeling along my ever-present IV pole, I got on the elevator with my wife and pushed the "down" button. Riding behind us were two doctors dressed in scrubs. When we reached the lobby, trying to provide a little levity, I said "Taxi, taxi" rather quietly as I left the elevator. My wife chuckled. The scrubs got off behind us. In a droll tone, one of them said, "You wouldn't be the first," and walked away.
Food
What can I say? It was OK but not great. The menu was extensive enough, but when you took away what I didn't like or couldn't have, or what they didn't prepare well, it got old pretty quickly, especially over a long stay. On top of all that, you're sick! Some days I couldn't even handle the sight of food that I loved. And finally, you have to order all three meals a day in advance. Do you know what you are going to feel like eating tomorrow? I certainly don't. One of the nutritionists told me that BWH is working on a completely new food-on-demand system for 2006 that will allow the patient to order a meal and have it delivered within an hour or so. If I have go back in, I'll get to try it out. On the other hand, maybe I'll never need to know.
The Clinic
For ongoing treatment or monitoring, patients like me are seen at DFCI's adult clinic by the doctor(s) whose specialty matches their diagnosis. This is where we first met 1 and 1A. In some ways, going to the clinic is like entering another world, one that you would never know about if you didn't have to be part of it. It's also like having a new family. You see a lot of the same people if you go often enough. Some look OK, others don't. Doctors and staff are constantly walking through the waiting room, perhaps waving or stopping for a quick word with patients they know. Some patients look like they're on their way to or from work. Others will be there longer. Infusion patients, for example, may need several hours for a unit of chemo, blood, platelets, etc. to get them through the next few days or weeks. New patients use a separate check-in line at the information desk. Usually accompanied by a spouse or friend, they look tentative, bewildered, afraid (and why not?). For me, the clinic almost always evokes two contrary but simultaneous reactions. On the one hand, it's a very warm and welcoming place and it gives me inspiration and comfort to see how much effort is being expended for me and others. On the other, when I think about how many people are seen there in a typical day, I am absolutely overwhelmed by the amount of sickness in this world and how many people are directly or indirectly affected by it.
A Star Is Born
On one of his many visits to my room during the second transplant cycle, V had mentioned that I was apparently the 1,000th stem cell transplant recipient from an unrelated donor (i.e., a non-relative) serviced by DFCI. This was a significant achievement, and not many cancer centers had reached this level. Weeks later, at a routine clinic visit after my discharge, he told me that DFCI was going to try to do some publicity on this and asked if I would be interested in talking with the media. Sure! As a professor, I get paid to talk. Talking to the media would be fun. DFCI put out some in-house and Internet articles, as well as press releases, and waited. The most interesting response came from Boston's Channel 5 (ABC), which sent a producer and cameraman to interview me and the head of the transplant team during one of my clinic visits in June 2005. The piece aired for over two minutes, pretty long by TV standards. We were all happy about how it turned out. I hope it helped spread the word about stem cell transplants and the need for donors.
Sunday
On one occasion, I needed infusion of an anti-rejection drug on a Sunday. Weekend infusion is handled on DFCI's 10th floor, which offers an excellent view of Kenmore Square and the Boston skyline. After I was done, the nurse said that we could walk around and admire the view. We happened to notice some colorfully decorated windows on one of the higher floors of a nearby building. There were lots of first names pasted on the windows, and words like "Love" and "Hope." It looked like a happy place, I thought, maybe a college dormitory. Then I realized what it actually was. It was one of the children's units and the windows were decorated because those kids were going to be there for a long time and their parents and nurses wanted them to be as comfortable as possible. It was more than I could handle. I shook my head and turned away.
My Donors
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. Blood type and gender are not relevant to the search. Instead, they look for up to 12 other characteristics, none of which I really understand. My first donor was a near-perfect match and my second donor was a 12-point match, but even this doesn't guarantee success, especially when the donor is not a relative. I did learn that both of my donors were male, fairly young, and from outside the U.S. Several countries in Western Europe and elsewhere have much more comprehensive stem cell donor programs than we do in the U.S., and thus foreign donors are not uncommon. Although there are many good causes that we Americans can and do support, I hope we'll do a better job with this one as time goes on. It only takes a blood sample 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.
At this point, I'm allowed to communicate anonymously with my donors through the registry, and I'm in the process of writing to each of them with an overview of my progress. After two years, by mutual agreement we can communicate directly or meet. I look forward to this, not only because it means that I'm recovering but also because it will be wonderful to get to know more about these generous, life-saving strangers.
What Now?
I've often 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 has found great satisfaction in what most people would 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.
