By Stephen Weber
In high school I started sports in courts with a little tennis, and while in college in Minnesota, I picked up handball. When I was twenty-eight, my econometrics professor in graduate school at the University of Wisconsin (Madison) introduced me to squash. We played at the newly-built Nielson Tennis Stadium.
I have played ever since. Unfortunately I only started getting lessons at age sixty-nine in preparation for my first attempt at the National Singles in the 70+ draw. I have played at the National Singles every year since that first foray and I’ve loved it. Off the court, for the past decade I have served as treasurer of National Capital Squash, the district association for the Washington, D.C. area, and for the past three years, I have been on the governing board of Potomac Squash Club just outside the city.
On July 9, 2015 my oncologist gave me the devastating results of a bone marrow biopsy conducted three weeks earlier. I had a serious and usually fatal blood cancer, MyeloDisplastic Syndromes (MDS), with a specific type called RAEB-2 (high risk). This disease strikes about 10,000, mostly elderly people each year in the U.S. It often progresses to Acute Myeloid Leukemia (AML). My only symptom was a recent history of low white blood cell counts, which motivated my internist to send me to a hemotological oncologist for a bone marrow biopsy to determine the cause. The biopsy procedure involved inserting a long needle into the top of my ilium (back hip bone) and extracting a bone chip and about an ounce of my bone marrow fluid. The cells were examined to determine the percentage of blasts, or immature stem cells. A normal blast count is less than five percent; between five and twenty percent is diagnosed as MDS; while more than that is called AML. Unfortunately, my count was seventeen percent.
Initially, my oncologist said that there were only two treatments. One was a chemical treatment (Vidaza) that might allow me to live about eighteen months. The other was a bone marrow transplant, which could offer some chance of a permanent cure. He told me that, unfortunately, I was an unlikely candidate for a transplant because I was seventy-four. My wife, Mary Ellen, and I decided to begin the chemical treatments as soon as possible and to research the possibility of qualifying for a transplant. The Vidaza treatments were not too arduous and after five months of treatments—all the while continuing to play squash with a port in my chest—a second bone marrow biopsy at Johns Hopkins revealed that I was in remission. They reminded us, however, that the effectiveness of Vidaza was only temporary, so we decided, despite my age, to pursue seriously a bone marrow transplant.
Our research revealed that qualifying for a transplant was based on the physical condition of the patient, not just age alone. A common metric used is called the Clinical Frailty Scale, according to which I thankfully scored at the top of the charts as “Very Fit” because of my lifetime of playing squash. Survival statistics are also much more favorable for patients rated as “Very Fit.” We discovered from the website of the National Marrow Donor Program (Be The Match) that MD Anderson in Houston performed the most bone marrow transplants a year and annually treated over 300 MDS patients. We requested and obtained an evaluation with the chief of transplants at MD Anderson, Dr. Richard E. Champlin and his personal assistant, Toby Fisher, in December 2015. At the interview, we showed him my National Singles jacket and photos of me on the squash court and after a battery of qualifying tests, he eagerly accepted me to be a transplant recipient.
MD Anderson completed a world-wide search in the transplant registry for a perfect match and found none in the twelve million donors registered in the U.S., but there was one perfect donor match in Europe out of the total of twenty million potential donors on the world registry. We returned to Houston January 31, 2016 to begin a ten-day chemotherapy conditioning protocol to kill all my stem cells to make room for those of the donor. In Europe they extracted about two liters of bone marrow fluid from my generous, anonymous donor and flew it by courier to Houston where it was processed and dripped into me on February 12, 2016. The medical staff refer to that day as my new birthday, since my blood type gradually changed from AB positive to O positive (same as the donor). I was like a newborn baby in that I had no vaccinations.
After about two weeks of intensive care and observation on the transplant ward, I was released to out-patient status. For several more months, I had to report daily to the out-patient clinic for intravenous administration of tacrolimus, an anti-rejection drug, and various antibiotic and blood balancing fluids. I did have setbacks and twice endured multi-day in-patient hospital emergency re-admissions at MD Anderson.
When we were finally allowed to return home to Virginia on May 19, 2016, I was on about fifteen different pills and ointments. I was weak and had lost most of my muscle. But I was determined to return to the game of squash that had thus far saved my life. Luckily, most of my regular squash partners at the Potomac Squash Club were willing to just hit with me and play “long” games (short balls in front of the service line are out of bounds). Initially, I had to rest after every five minutes of play, but gradually my timing and stamina returned and I resumed weekly squash lessons. By January 2017, after an intensive round of prescribed physical therapy, I was playing at a higher level than before I was diagnosed, so I decided to enter a regional tournament in the 70+ draw. I won that draw, which improved my US Squash rating so that I was seeded fourth in the eleven-player 75+ draw for the National Singles at the Philadelphia Cricket Club in March. Though I lost in the first round, I won my next two matches to take the consolation title. I came home with my first US Squash plaque, which we have prominently displayed for all to see when they enter our home.
In June 2017 we returned to MD Anderson for a round of follow-up tests and my third set of vaccinations. I am thankful to report that all the test results are very encouraging with no sign of relapse and that my next checkup is not until the two-year anniversary of my transplant in February 2018.
For me, squash has been the game I love. It has enhanced my life and now even given me extra years of life to enjoy.