Forgive me. I’m going to have to ask you to do something horrible.
Imagine you are fighting a type of cancer that could potentially be cured by a bone marrow or adult stem cell transplant, and that, like 70 percent of people in this position, you do not have a relative who is a close enough match.
You then must turn to the National Marrow Donor Program’s Be The Match Registry in hopes of finding a stranger who 1) has actually joined the registry and 2) has a tissue type close enough to yours so that your immune cells will not attack the donated cells.
Now imagine there is no match. The person who is your best chance at surviving is probably out in the world somewhere, but out of reach.
Now imagine the one with cancer is not you, but is your mother, your brother — your child.
These were among the scenarios playing in my mind when I joined the Be The Match Registry over three years ago. A cotton swab rubbed on the inside of my cheek and a bit of paperwork was all it took.
And when I got a call a couple of months ago from the folks at Be The Match telling me that a 56-year-old man — the same age as my mother — with non-Hodgkin lymphoma needed my peripheral blood stem cells (PBSC’s), I thought of some far less hypothetical scenarios.
I thought of my Aunt Karen, who battled breast cancer and appeared to have won. Then she started having memory problems. It was brain cancer. Inoperable. She died earlier this year.
I thought of Jim Bowen, the father of one of my closest high school friends. He and his wife, Cherie, always treated me like a member of the family. A few years ago he was diagnosed with leukemia. He fought so hard for years to beat the disease before his weakened immune system succumbed to pneumonia last November.
I thought of Susannah María Gurule, the granddaughter of El Hispanic News owner Clara Padilla Andrews. She was only 12 when leukemia also took her life. She might have been saved by a bone marrow transplant, but a donor was found too late.
I thought of these and all the other people I seem to hear about almost on a daily basis who have been stricken with some form of this evil, achingly frustrating, equal opportunity destroyer.
And I saw a chance to give cancer a gesture that would be blurred out on broadcast television.
A boy on a bus
It seems fitting that I should write about my experience donating stem cells in this newspaper, as another story assignment for El Hispanic News inspired me to join the Be The Match Registry in the first place.
On June 25, 2007, I drove out to Hillsboro to interview Pat Pedraja. Then just 12 years old, Pat was already a leukemia survivor, and was travelling across the country on a bus in an attempt to get more people on the registry. I was among those he convinced during his journey.
The child of a Cuban-American father and an Anglo mother, Pat was especially focused on registering more people of color. Since tissue types are inherited, a match is much more likely to be found within one’s own race or ethnic group.
This makes finding a match challenging for people from more genetically diverse populations — particularly African Americans. Challenges also exist for all people of color because there are fewer potential donors of similar ancestry on the Be The Match Registry.
According to the National Marrow Donor Program (NMPD), the chances of finding a willing and able donor on the Be The Match Registry are:
• 66 percent for African Americans or Blacks,
• 72 percent for Hispanics or Latinos,
• 73 percent for Asians or Pacific Islanders,
• 82 percent for American Indians or Alaska Natives, and
• 93 percent for Caucasians.
There’s not much we as individuals can do about the genetic barriers to finding a match, but by joining the Be The Match Registry people of color can increase the likelihood that other folks like them can have a real chance at recovery from some kinds of cancer.
A donation without dollar signs
I first became linked to the man who is now in possession of a copy of my immune system in December of 2008. The NMDP called to tell me I was a potential match for a person with non-Hodgkin lymphoma, but I would need to get more blood tests to be sure. The blood tests showed I was indeed a good match, but I later got word that the patient had been deemed unready for a transplant.
I didn’t hear anything more about him until Aug. 27, 2010, when a Be The Match representative told me he needed my stem cells, and asked if I was still willing to donate.
I wasn’t aware peripheral blood stem cell (PBSC) donation was an option; I’d only ever heard of the bone marrow procedure. Yet PBSC donations are now utilized in 75 percent of transplants in the United States to treat blood-based cancers, such as leukemia and lymphoma.
After what felt like pretty extensive medical tests — including a chest x-ray and an EKG — to ensure that I was healthy enough to donate, I received injections of a drug called filgrastim for five days. Filgrastim increases the production of stem cells within the bone marrow, and many of those cells eventually make their way into the blood stream.
On my fifth day of injections, I was admitted to the hospital, where the stem cells were harvested through apheresis. I spent several hours in a hospital bed, unable to move my arms as blood was taken from a vein in one arm and spun in an apheresis machine to isolate the stem cells. What remained of the blood once the stem cells were removed was returned through a needle in my other arm.
This process is not always fun. The filgrastim gave me headaches, made me nauseous and achy, and both caused fatigue and trouble sleeping. I felt almost completely recovered within a day of my donation, however.
And I would do it again without hesitation. It’s even possible I’ll need to, should my recipient suffer a relapse and require another treatment. His own immune system was destroyed through chemotherapy, and perhaps radiation, to allow my immune system to take over. He now has my blood type if he didn’t already, and my girly chromosomes are within his male body.
Part of me is in another human being’s bones. How awesome is that? For the next year, assuming he survives — Be The Match has to prepare donors for the possibility their very ill recipients might die — I can only communicate with him through anonymous cards and letters. Even after a year he might decide he doesn’t want his identity revealed, but that will not diminish the mind-blowing fact that my immune system now has a second home. One that I deeply hope remains in good repair for a long time.
I’ve been told I’m racking up some good Karma. That I gave an amazing gift. That this is not something many people would do.
While it feels good — if a bit embarrassing at times — to be praised and patted on the back, I find myself wishing that people didn’t think donating bone marrow or stem cells — or even just blood — was such a rare act of selflessness. It would be great if this kind of donation was so ordinary that news of what I had done was met with a smile and mild exclamation of “cool!” rather than astonishment.
Because really, this was a gift to me as well. In addition to having the opportunity to help another human being — and learn about some a pretty amazing medical advancements in the process — I had the rare chance, without going to medical school or spending years in a lab, to strike a small blow against a disease that has taken so much from my family and friends and from people I admire.
Now that I’m nearly done typing, my hands will yet again be free to flash cancer one of those aforementioned gestures. And I won’t be waving hello.
To join the Be The Match Registry online, visit http://join.bethematch.org. For more information on how to join in person, go to www.marrow.org/JOIN/Join_in_Person/index.html. Financial donations, which are always needed and welcome, can be made at www.bethematchfoundation.org/goto/teamdelores. To become a Be The Match volunteer email Delores Rue-Jones at firstname.lastname@example.org or call 503-241-2242 ext. 7025.
Photo by Legacy Good Samaritan Hospital staff member
Julie Cortez, editor-in-chief of El Hispanic News, donated her peripheral blood stem cells via apheresis at Legacy Good Samaritan Hospital in Portland, Oct. 14.
Artwork by Christopher Alvarez, El Hispanic News
Este artículo también está disponible en / This post is also available in: Spanish