These things only happen to others…
It was October 25, 2011. As I waited in the hematologist’s office to get the results of the bone marrow biopsy that would provide the answers to the random and debilitating symptoms I had been experiencing for a month, I was not concerned. I do remember wondering why hematology (the study of blood) was paired with such an ominous title as oncology (the study of cancer) in his degree hanging on the wall but I did not take it personally. I am far from being a worrywart. I have always been relatively healthy, a vegetarian of many years, I was into wellness, a regular yoga practitioner, and so on. I had my bases covered. Furthermore, I knew everything happens for a reason and works to our benefit if we can wait long enough to connect the dots.
It was going to be a simple answer. Maybe anemia because in the last few months I had been very busy and not taking the time to prepare food as I should have. I was in a hurry to get this doctor’s appointment done. It was late afternoon. I had to pack my bags for a business trip, prepare for a meeting with the client there the next day, go to the drycleaners, in short, I had a limited period of time to get these things done.
I glanced over at my daughter who was on her iphone, from the corner of my eye, feeling guilty that she had taken the time to accompany me to what was a routine doctor’s visit when she had her own responsibilities to attend to.
Finally, the doctor ambulated back into the examining room, lab report in hand. At last, this show was on the road. It was only 3:00 p.m. so I still had time to make my rounds if I hurried. He looked at me impersonally and in a smooth tone, the result of years in practice no doubt, he told me that I had been diagnosed with MDS. He rattled off an incomprehensible name for the acronym (and I do medical interpreting for a living). He went on to say in one breath that he suggested I start chemotherapy immediately and contact the cancer center of my choice to schedule a bone marrow transplant within three months, that being the only cure for this disease, which quickly degenerates into leukemia left untreated. My brain mercilessly slammed the brakes on my hitherto, now trivial stream of consciousness. I felt I was floating in a void, looking at myself from afar. The only thing I had understood from the last three minutes of his dialogue was “leukemia”, and “cancer” and I noted sheepishly in my internal dialogue, that the only thing I knew about leukemia was that it was a disease of the blood, whose spokesman in the 60’s had been the entertainer, Danny Thomas, father of Marlo Thomas, who had founded St. Jude’s Children’s Hospital. Period, end of story.
Analyzing my choices.
I glimpsed at my daughter again, whose face was motionless and deathly pale, in contrast to her fingers that were full of life, moving in a blur, tapping the iphone’s keyboard without respite. I remember being amazed at her speed. She had always declined my suggestion to study typing to help her with her assignments in school. Funny what detours our minds take under stress. After reflecting, her only comment to the doctor was how long does she have to act and how do you spell myelodysplastic syndrome, which she used to google the condition and text my son. I’m sure she agreed with me that there was no point in beating this horse to the ground at that moment when we had, at best, a very simple grasp of the basics. I knew the only course for me was to internalize the information to plan how to proceed. This was easier said than done as I was not a fan of allopathic medicine (mainstream drug and surgery therapies) and this was the only alternative I was being offered to survive.
I still held out that the doctors could be wrong in my case because I had gotten rid of the joint aches and pains that had been plaguing me by visiting a physical therapist, but the doctors I went to at the Moffitt Cancer Center in Tampa, that specialize in bone marrow transplants, assured me that the “disease was cooking very fast” and I had to act immediately to forestall the possibility of developing acute leukemia which would reduce my chances of a successful transplant that was required within the next three months.
My children wisely never went head-to-head with me. They simply acknowledged that in the end, whatever I did was my decision, but we should have a plan B, in case my theory was wrong. We contacted the Icla da Silva Foundation, who is the world’s largest registry of potential bone marrow donors, affiliated with the National Marrow Donor Program a/k/a Be the Match Registry®. Testing kits immediately went out to my four brothers and several friends and colleagues who volunteered to send a sample of their DNA to see if their bone marrow was such that they could be potential donors. I did not know at the time how important inherited factors of ethnicity and genetics are in this process. Nor did I know that 70% of patients are unable to find a match in their family and that furthermore, minority populations are sorely underrepresented in the registry, where Hispanics comprise only 10%.
Two weeks had not passed when a virtual “carny” pulled a lever and the roller coaster cranked up. I had not gotten any results back from the testing when I ended up in the hospital with one opportunistic infection after another, seriously impacting the possibility that I would be able to undergo a bone marrow transplant within the prescribed period, assuming I could find a suitable donor.
Fast forward. We heard in the nick of time that I had been blessed that my youngest brother was a match. I was able to grab the last available slot to do the transplant procedure at the end of January 2012. I made it out of the hospital on December 25, 2011 and prepared to immediately travel by car to Tampa.
Back to “The Others”, a psychological horror film, unlike its famous awarded Spanish predecessor, because of its real dimension.
The equation has changed now. “The others” are no longer an unknown portion of the population, unconnected to me. Not that they were ever truly unconnected but that is how my linear consciousness interpreted it to make it easier for my brain to process the information.
Now “the others” for me in this context, are those Hispanic patients in the same circumstances I was facing, who do not have a match and their time is running out. I have met some of them vicariously through their stories on the internet and some personally, who were not able to secure an ideal match because of the reasons outlined above and their transplants relapsed. This is for them. I am focusing on the U.S Hispanic population to narrow the scope of this paper, because I am a part of it and we represent 16.7% of the U.S. population, making it the nation’s largest ethnic or race minority according to the July 1, 2011 U.S. Census Bureau figures. Nonetheless, all ethnic groups are facing the same constraints to varying degrees.
What is the issue?
Due to a lack of relevant education, and subject awareness, there is a prevalent fear of donating physical organs in the Hispanic culture and thus an extremely low level of stem cell and bone marrow donations. Many subsequent recipients, myself included, have been fearful previous to needing donations, despite the fact that my children have regularly given blood. If not for the several transfusions I have received during the course of my illness, selflessly, from complete strangers through a blood bank, I would be dead. And I am among the 1.1 million (.02 of the total Hispanic population in the U.S.) that is over 25 years old and holds a post graduate degree, according to the July 1, 2011 U.S. Census. What can we expect from those who have not had the opportunity to attain that degree of education yet? Only 10% of the bone marrow donor registry is Hispanic and of that 10% only 47%, roughly half, is typically available when called to donate. What does that say for the chances of “The Others” for which a BMT to give them a donor’s healthy bone marrow to produce their blood cells is their only hope?
Because of the relatively small volume of blood disorders among Hispanics, considering other cancer research, pharma, which has a vested interest in profitably allocating the marketing budget for their products, has not sponsored large scale studies to identify the psychological traits discussed above. Those traits are compounded by others documented in a Brazilian study, which states that among uneducated males, the spinal cord was confused with the bone marrow and fears of paralysis, impotence and death were expressed. Also of not coming back from anesthesia should a traditional surgical extraction of bone marrow be performed. I have personally undergone the latter procedure for biopsies on several occasions under an anesthetic agent called Propofol/Dipravine and it is not only almost painless but you retain no memory of the proceeding. Furthermore, 80% of donations are currently done through stem cell collection in comparison to the surgical extraction of bone marrow, and the collection does not require an anesthetic of any type.
What is the solution?
The solution is for Hispanic professionals to start working for the future setting an example by donating and bringing more donors in with this information to counteract long standing myths. Consider that as of January 2013, in the US there were approximately 18 million Latinos on Facebook, and 1 million http://marrow.org/News/Media/Facts_and_Figures_(PDF).aspx , of which only 50% will make themselves available, on the non-profit National Marrow Donor Program® of potential donors, which has been renamed the Be the Match Registry®. Don’t wait until a person close to you is stricken, take the first step and Be the Match®.