Version date: January 1, 2011: Day +4242
Brian, Eve, and Naomi Zikmund-Fisher
Who am I |
My history with MDS-RA |
Finding a Match |
Leaving for Seattle |
Recovery and Moving On (including current news)
My Advice for Others Facing Cancer, BMTs, etc.
Good Ideas for Transplant Patients and Caregivers
Some Shameless Plugs... | Naomi's Sermons on Blood and Marrow Donation
My wife, Naomi, has chronicled the story of my transplant on a day by day basis in a new book entitled Across the Chasm: A Caregiver's Story. All proceeds from the sale of the book go to BMT Infonet, which provides information and support to transplant patients, and other transplant-related organizations.
Read an excerpt from the book to learn more!
I'll give you the $3.95 tour. I am 41 years old, happily married, with a very cute (if I do say so myself) daughter who is now 12 1/2 and a 5 1/2 year old son, all in Ann Arbor, Michigan. At work, I'm an Assistant Professor of Health Behavior and Health Education at the University of Michigan School of Public Health, a Research Assistant Professor in Internal Medicine at the U of M Medical School, and an Investigator at the Center for Bioethics and Social Sciences in Medicine, also at U of M. The medical trials you'll read more about below came while I was working on my Ph.D. in Behavioral Decision Making at Carnegie Mellon University. I study decision making and health communication, especially how best to communicate information about health risks so that both patients and physicians understand probability and chance in making their decisions about medical treatments. I have always been interested in the topic, but early on I focused more on consumer decisions about savings and credit. However, facing first infertility and then cancer was a crash course in, shall we say, applied medical decision analysis, and the experience changed my goals. Hopefully, I can make lemonade from my lemons and use my personal experience to make me a better researcher.
Before I get into the story, however, I do want to make one offer. I know that many people who find this page will be at a critical point in their lives. You, or someone you love, is probably facing cancer or a stem cell transplant right now. You feel scared by the enormity of the situation, the uncertainty of what's going to happen next. If, for any reason, or even for no reason, you want to contact me, to hear a voice that says "it can be done," to help you understand what to expect, please do so. It's why I wrote the page in the first place. You won't be bothering me. Really.
In 1985 while still in high school, I had a temporary reduction in my platelet count (blood cells which start the clotting process), the cause of which was never fully understood. For the following 13 years my counts were not normal but almost so, and the incident was set aside as a bad memory until February of 1998. I was playing racquetball, hit myself and got a huge bruise, one of the major danger signs. Subsequent blood tests showed a platelet count of 19,000 (normal is 150,000-450,000) and bone marrow biopsies confirmed a diagnosis of an early form of Myelodysplastic Syndrome called Refractive Anemia. MDS-RA patients do not produce enough blood cells (in my case, I lacked platelets most of all) but do not show the kind of excessive growth of immature cells which is the hallmark of leukemias.
I waited many months, hoping to see my counts stabilize but instead seeing a slow progression, eventually reaching the point at which I needed regular platelet transfusions to prevent uncontrollable bleeding. At the same time, my infection-fighting white cells and oxygen-carrying red cell counts were sliding into dangerous zones as well. Platelet and other blood transfusions only work for so long before the body starts to become sensitized to them as foreign bodies, and the only long-term solution is a bone marrow transplant. Not a fun option by any stretch of the imagination, but too important not to try.
Given the complexity of bone marrow transplants, experience matters a lot. It's also a fact that most patients with myelodysplasia are too old (generally over 60!) for transplantation, and thus few centers have experience with MDS transplants. As such, I decided after long discussions with my wife Naomi to have my transplant done in Seattle at the Fred Hutchinson Cancer Research Center, one of the largest and most respected stem cell transplant centers.
Siblings have a one in 4 chance of being a perfect match for transplants, but as I am an only child, such was not an option in my case; I needed an unrelated donor. In such cases, the degree of match is incredibly important, often determining more than anything else the likelihood of survival. The donor search took 5 months, ending up with a perfectly matched (6 of 6 / 12 of 12 / same ABO & CMV) male donor one year younger than me from Australia.
The Problem of Too Many Matches:
What I learned in the search process scares me as someone whose academic field is decision-making. I was fortunate in one way: my basic HLA-A&B serological typing (the base first four antigens tested and recorded for all potential donors) is very common. Unlike many patients who have few options, I had literally 800+ 4 of 4 matches of people not yet typed at DR (the next pair of antigens tested) and over 40 possible 6 of 6 matches of people with known DR types. The problem was that I have a relatively rare HLA-C, given my A, B & DR. Thus, we literally went through all of the accessible 6 of 6 matches, only finding the match in the absolute last set of available international donors.
But what about those 800 4 of 4's, you say? This is one case in which it would have been better to be fewer. If there were 50, we would have typed them. But 800 was too many, too costly, taking too much time. We need more donors to be typed at DR to facilitate faster searches and allow those potential donors to actually be considered by patients like me. To this end, Naomi and I set up the The Brian Zikmund-Fisher Fund for DR typing to pay for DR typing of new and existing donors. Back then, this was a really big issue, as much of the donor pool was not fully typed. These days, all new potential donors are fully typed when they enter the registry, so the fund is now defunct. Still, I'm proud of what we did and our ability to recognize a need that was not popular or flashy but had a real potential to make a difference for transplant patients in that oh so nerve-wracking search process.
Naomi, my daughter Eve (at the time only 11 months old) and I left on April 26th, 1999 to begin the transplant process. Before leaving, however, there was one ceremony I had to have. Bone marrow transplant patients have to take high doses of chemotherapy drugs to eradicate their own marrow before they can receive the donor's replacement marrow. These drugs have many side effects. One of the most well known is that they cause the patient's hair to fall out -- all of it.
Now, being the proactive kind of person I am, I decided that I didn't want everyone's first reaction upon seeing me post transplant to be "Gee, look what the disease did to him" or some such. So, taking the "you can't fire me, I quit" logic to its obvious conclusion, I scheduled a large party for 30 or so of my closest friends the weekend before we left to cheer me on and shave my head. Food was plentiful: tons of tiramisu from a local cafe, ice cream with homemade fudge sauce, brownies, rum balls. We even auctioned off the right to first crack at my head (winning bid gets to do anything they want to it) with proceeds going to the DR typing fund. Take a look: the result wasn't too bad!
We settled into one apartment in Seattle only blocks from the clinic and hospital and were fortunate enough that my parents could take leave to be with us in another apartment in the building complex for the entire summer. The combination of a transplant patient and a newly-walking toddler would prove to be enough to keep Naomi, my parents, her parents and all our other many visitors busier than we could have possibly imagined.
I can't do justice to the saga of the transplant itself -- Naomi wrote daily updates to our friends which chronicle the experience far better than I could. Those emails serve as the foundation for her book, entitled Across the Chasm: A Caregiver's Story, published through BMT Infonet (publisher of Bone Marrow Transplants: A Book of Basics For Patients and the "Blood and Marrow Transplant Newsletter"). All proceeds from the sale of the book go to support organizations like BMT Infonet.
To summarize, however, I have been absolutely, incredibly lucky:
I experienced relatively mild nausea from the chemotherapy and avoided radiation as it isn't part of the Hutch's protocol for MDS-RA patients. My mucousitis was confined to a bad sore throat and mild mouth pain, and as a result, I kept eating throughout the transplant, managing to average 2700 calories a day, never needing IV "food in a bag" and never needing a morphine pump. I won't say it was easy, but I managed.
While inpatient, I took up walking to get out of my room as much as possible, and clocked an average of almost 3 miles a day walking laps around the ward. No, really, I'm not exaggerating: I kept records of my laps and became well known for "bowling" through the assembled doctors and nurses each morning as they did rounds.
My graft began to come in after in less than 2 weeks, and although the white counts took a while to reach safe levels, I also had significant improvement in both reds and especially platelets almost immediately. Post discharge complications were confined to some nasty gut GVH which kept me from taking medications orally for a while and was stubborn in returning when I tapered down my steroids.
Otherwise, as one doctor put it, it was almost a "outpatient transplant." Nevertheless, let me put it this way. If that was as good as it gets, and everyone at the Hutch said it was, it still was pretty darn bad. I am in awe of my fellow transplant patients whose experiences are even more rocky than mine.
A few pictures, though, to put some context on the experience:
The news of 2001 was that I finally got OFF DRUGS, or at least all the immunosuppressants. No more prednisone, no more cyclosporine or Cellcept. Just acyclovir (see below) and calcium and vitamins and calcium and ... did I mention the calcium? When I used to take 40 pills a day, I couldn't imagine reaching this point. But, here I am.
The good news has continued to today. Medically, I'm very good. I occasionally have a touch of what I think is GVH that bugs my intestines and sometimes my skin a few days here and there. Blood counts are all normal now. My one-year checkup in June 2000 pronounced me 100% donor marrow and it's doubtful that would change.
Pretty much all my transplant problems were gut related. At first, my gut GVH kept flaring every time I tapered my prednisone, so my doctors added Cellcept to prednisone and cyclosporine. That combination seemed to work, allowing me to start tapering the prednisone dosage. As I changed my dose, however, I had repeated small "flares" of diarrhea and nausea, causing us to inch my dosage back up for a few weeks before starting again. In addition, for about a year, I was on a schedule so that I took prednisone every other day, and that 48hr cycle seemed to affect me generally. I felt great on Pred days and "off" (flushed, nauseous) on the other days, but I must admit it did do a great job of controlling the gut symptoms.
In February 2001, I finally got off Prednisone after almost 18 months, having had to drop my dosage by 1mg steps to manage it. The long term exposure did my mood no favors while it was happening and has left me with a mild amount of bone density loss which I must now work to rebuild (hence, the calcium!). Cyclosporine taper went pretty easy, over in 2-3 months, and getting off of it really helped my lingering anemia. Cellcept was a breeze.
In January 2002, I finally stopped the prophylactic doses of antibiotics (Bactrim) and anti-virals (acyclovir). Yay, right? Three weeks after stopping the acyclovir and right after I finished my dissertation (see below), guess what? Shingles. All over my right forehead, eyelid and scalp, though fortunately not in the eye itself. Very painful. So back on acyclovir for 6 more months. Oh well.
The most important change, and the one I was never sure would really happen, is the transition from being a "sick person" to a normal person with some chronic health issues. In the early parts of the recovery, perhaps for the first year or so, every minor fluctuation in how you feel raises the spectre of illness, GVH, relapse, etc. It takes time to stop feeling that way, to actually believe that (a) you are really getting better over time and (b) that the current illness/cold/symptoms will actually go away eventually.
I get the usual spate of colds each winter, especially when Eve was in daycare (though by the time Jesse arrived, it wasn't as bad). Sometimes they do take a toll -- I had a cold in March 2001 which turned into a nasty sinus/ear infection that lasted over two weeks even with antibiotics. Nevertheless, my ability to "roll with the punches" is definitely better over time, and at this point I would say I have an immune system like anyone else. I still can't handle any dairy products, though, and I have no idea if that will ever come back. Of course, that makes getting enough calcium to fight the osteoporosis difficult, but on the larger scale of things, it's a small burden. Fortunately, we all love Asian cuisines which use little dairy products at all.
I really believe that physical exercise is essential for both mind and spirit. I love racquetball, and playing it with some of my fellow graduate students while I was in Pittsburgh helped me regain much of my strength and stamina. Plus, it provided a wonderful social opportunity as well as an hour a week to clear my mind of work, health worries and everything else. I've stopped that for now but still walk all over the U of M campus whenever I can and sometimes go rollerblading in the park. I find that working on my physical health is essential to maintaining my mental health. It's tangible and under my control. Just as walking was essential to my survival while inpatient, being consistent about exercise is central to my life from here on. Not that it's always easy -- I managed to strain or partially tear my left rotator cuff while playing softball in 2000! It's mostly healed now, but it's a constant reminder to me that having had a BMT, the ultimate in medical procedures, doesn't make you immune to the normal physical ailments of regular day-to-day existence.
The other major change that time wrought was in my professional life. In the introduction, I mentioned that undergoing the diagnosis and transplant process had been a crash course in medical decision-making. I had been somewhat stuck on my dissertation when all of this hit. As I grew stronger and was able to return to the "job" of completing my Ph.D, I realized that my academic background and personal experience gives me a unique perspective on many issues in patient-physician communications. So I dumped my previous work and refocused my career on medical decision making and risk communication. My dissertation research used an internet-based experimental environment to examine how long patients and physicians are willing to keep trying successive rounds of treatment before giving up, using the context of fertility treatments and couples trying to conceive a child as a model. It must have been pretty decent -- I won the student presentation prize at the Society for Medical Decision Making in October 2001.
The main change since the transplant is that in 2005, Naomi and I used sperm that we froze prior to the transplant to have our second child, Jesse. He is of course nothing like Eve, but that's par for the course, right? It's wonderful to realize that life really can go on in many ways after this experience.
All in all, the road of recovery (and it is a road of, not to -- a process, not a goal) is pretty flat and pretty boring. What's hard is keeping going when you don't see many signs of progress and shaking off the bumps that you do hit. Even just one bad day of nausea from a cold brings the fear of flares, or worse, up again. Still, I'm grateful for every moment I have and hope that by telling my experiences, both here and individually, I can help others face what they must with hope and strength and dignity. Now, if only I had Naomi's eloquence (see her sermons, below). . .
Attitude makes a big difference. It may not keep you alive by itself, but it will keep you fighting.
In fact, psychological research shows that people who respond well to a cancer diagnosis and to their treatment are those who maintain hopefulness and continue to find purpose in living during and after their encounter with the disease.
(Michael F. Scheier and Charles S. Carver. "Adapting to Cancer: The Importance of Hope and Purpose" in Psychosocial Interventions for Cancer. (Andrew Baum and Barbara L. Andersen, Eds.) Washington DC: American Psychological Association, 2001.)
You have one priority as a patient. To do what you can, no matter how hard, no matter how much you cry doing it.
Research your disease, the procedure, the risks, the drugs. No matter how scared you are, more information is better.
Be active with your doctors. Ask questions. Ask them again when you don't understand the first time. Ask them again to be sure. And if, unfortunately, you run into a doctor who is not willing to give you answers, find another one who is.
Tell your doctors the truth, the whole truth, everything you can think of, whether it seems important or not. Then get them to do the same to you. Never accept anything because "they said so." Understand. Question.
If you are facing a bone marrow transplant, don't underestimate the importance of the match. If you have a sibling match, thank your lucky stars. If not, like me, don't be afraid to take an active role in the search process for a donor. Sometimes, you can help move things along. And, most importantly, don't let your fear lead you to an earlier, mismatched transplant if you still have reasonable hope of finding a full match. I've seen the difference between matched and mismatched transplants first hand. It's worth the wait.
Be willing to suspend everything else for this if it will make a difference. But, be willing to continue to live your life along the way, too. Some things are worth giving up to try to get through this. Some risks are worth taking to make what time you have, however long it may be, all that it can be.
When you are in the hospital or clinic, don't just sit back and be "patient." Get up. Walk. Chat with someone. Visit the nurse station, or a friend, or just the hallway. Try something new. Every day. Period. It makes a difference to your mindset, it makes a difference physically, and both may help keep you alive.
Finally, for those of you who have joined me on our long trek on the road of recovery, be willing to acknowledge that this road can be just as hard as the transplant itself, in its own way. Day after day of no visible change, still not "healthy" but not quite "sick," is hard to take. Simply acknowedging that it IS hard may help. For me, I have found that I need to think back to the mental focus I had during the transplant process itself to regain the right mindset to keep pushing forward.
The reality is cancer, leukemia, bone marrow transplants, whatever confronts you is scary and incredibly difficult to face. You don't have to delude yourself, to pretend it isn't there, to pretend you know you'll make it when you're afraid you won't. On the other hand, you don't have to win the entire battle each day, just convince yourself to take that next step. The day you don't feel like walking, do one lap or go to the store or just go outside. If you only feel like one lap, do two. If you can't bear the one, at least get up for a bit. Always challenge yourself to do one more thing to help you that day. Put them all together, day after day, and you'll be amazed what you can and will do.
I have met many people on this journey, and the single common element of those who I see do better is their attitude. It may not carry you all the way; many, many people with the best attitudes one could hope for still don't make it or find the way especially difficult. What I do believe is 1) that it makes a difference both in your chance of survival and in the quality of life you live, however long it may be, and 2) that it is one of the few things about this process which is under your control. Control is a scarce resource as a cancer patient. Make use of what you have.
The following is a partial and ever growing list of good ideas for patients and caregivers. Feel free to contact me with further suggestions -- Let's try to keep from reinventing the wheel too often!
Email Update Lists: One of the most frustrating things about any major, long-term, life event is the fact that you have to tell the same information over and over to each new person. Consider creating a email list of all the people who want to be kept informed about your progress and status. Regular email updates, whether daily (as Naomi did) or weekly or whatever, will help keep visits and phone conversations on the more important issues of how you're doing and feeling, rather than the factual news.
The Phone Call of the Day: A great idea for anyone, but especially good for anyone who has to travel to their transplant center. Make lists of friends and family who you would like to hear from. Appoint one friend or family member as the "scheduler" and give them the lists, with phone numbers. Then have the scheduler contact everyone on the list and arrange for one person to call you each and every day. I can't tell you how wonderful it is to get the call and know, every day, that someone was thinking of you. Be sure to have anyone traveling with you make up their own lists and get their own calls. Yes, you can always pass the phone, but it's important that they know someone is thinking of them independent of you, the patient.
Caregiver's Night Out: Caregivers need breaks, too. No matter how strong the desire is to stay with the patient 24/7, sometime you need to get away. We enforced this by having our friend, Mark, who lives in Seattle, take Naomi (sometimes forcibly) out to dinner once a week. Mark wasn't sure how he could help, but he said, "well, I can do THAT!" Honestly, it was good for me too, to have a little time alone to think and reflect.
The Status Notebook: This is most important if there are multiple people acting as caregiver, trading off, while you're in the hospital. The problem is how to keep everyone informed of current issues. Remember, you may well be either asleep or drugged and unable to pass on information. Buy a small notebook and leave it in the hospital at all times. Whenever something happens (e.g., doctor comes by, test results come back, symptoms change), have whoever is there write it down. This can really help minimize confusion caregivers regarding what's happening.
Plug #1: Get Typed! If you haven't been typed as a potential bone marrow donor, please consider doing so. When someone (like me!) has no viable related donors, the possibility of transplant and the chances of survival are fundamentally dependent on the existence of the largest possible pool of potential donors. Science is finding more and more issues to check for when searching for a donor, and we need more and more people to be donors to ensure that all who need a donor can find a good match. You can get typed many ways, through local blood centers, local drives. Call 1-800-MARROW2 or see www.marrow.org for the National Marrow Donor Program (now called the "Be the Match Foundation) and the names of typing centers near you.
Plug #2: Give Blood There are tons of people who, like me, need regular blood transfusions to survive from day to day. It takes so little time to give blood, and means so much. Contact your local blood center for details...
Naomi's Sermons: If you need even more inspiration...
My wife, Naomi, has now twice been asked to come and talk about the importance of becoming typed as a potential marrow donor and of giving blood. Her sermons are far more eloquent on this topic than I will ever be.