It was evident last week that I may be unofficially starting a different kind of donor drive – this time for my hair. Redheads and their companions alike came out in droves in response to my last post, offering to grow extra long locks for me to weave into a makeshift wig. In fact, last week after I spoke at a Be The Match Donor Coordinator Conference, a redhead from the audience offered a rainbow of reds options, ranging from her vibrant red to her sister’s auburn and her brother’s strawberry blonde. I may hold auditions.
Beyond the post-presentation hair offers, speaking to Be The Match donor coordinators who had gathered from around the country yielded so much positive. Talk about a rewarding job. These are the people who, after a doctor identifies potential matches through the Be The Match Registry, call each prospective donor, notify them that they’re a possible match and coordinate additional tests. I know a lot of you are waiting for their call.
But I was surprised to learn that the job isnt always so gratifying. A hefty portion of would-be donors – maybe as high as 4 in 10 – reply that they’re not interested in donating when Be The Match calls. Why? Some people just didn’t think the decision through when they swabbed their cheek and filled out a six-page document to join; others have misconceptions about the procedure, thinking it’s painful or expensive for them; still others say “now is not a good time,” citing a new job, family issues, or no reason at all.
While there are legit reasons a person can’t donate, many explanations are based on misconceptions or perhaps narrow consideration of the impact of their decision. What would have happened had my donor said “maybe next time”? I was lucky to have a backup donor, but what if that donor had not been as perfect? Moreover, what if I was of Pakistani descent, and my chances of finding that one donor were 1 in 20,000?
These statistics put donor coordinators in a tough spot. They don’t – nor should they – pressure a potential donor into anything they’re not comfortable with. At the same time, if a donor cites a misconception as the reason they won’t donate, shouldn’t the coordinator clear things up? Moreover, if a potential donor responds, “I can’t right now – I’m in a wedding next week,” shouldn’t the donor coordinator at least try to put the events in perspective? I think so, and Be The Match increasingly thinks so, too. They’re not subverting to coercion or anything, but they’re shifting towards a policy of “It’s also our job to make sure the would-be donor fully understands their decision.” I think that’s a good move.
Because donor coordinators are just that – people who work with donors – they often don’t hear about the patient experience. I used to jump at opportunities to “share my story” at events like these, eager to chronicle my litany of hardships and make people cry. I actually thought tears were the measure of a successful speech.
So when I was asked again to “share my story” – now a story more than doubled in litany – I instead wanted to laugh, to express emotions not dictated by the usual cancer dramatics. And you know what? It felt good. I think I still mothered a few tears, but you’ve always got a few “I cried at the end of last year’s Glee season”s in the audience (and I mean that with the utmost love, because I think I cried too).
The whole time I was thinking, “Is the person who made my calls in this room?” They almost certainly had to be. I had always wanted to meet them. And if you remember, my mom, dad and me really wanted to be them after we found out my brother Jack’s marrow wasn’t “my shit.” When I got impatient waiting for the test kit to arrive for him, I drove to the U, plucked him from class and drove him to Mayo to get the tests moving. When we had to turn over that sovereignty to a stranger Be The Match donor coordinator, we felt defenseless in the fight for my life. After meeting many of these coordinators last week, I can tell you that there are no better people that patients and their families would want on their offense.
I don’t quite know how to transition into this next experience, so I’m just going to say it.
I had another TRL moment on Tuesday. Except this time it was a different acronym’s fault – the GRE. During Christmas break of my freshman year of college, I went – still at a loss for locks – to NYC with a few friends. A live taping of TRL (a music video countdown show on MTV for all you non-millenials) was a must-do in Times Square. We were able to get tickets because there weren’t any big celeb appearances; our episode’s big deal was the premiere of a J.Lo. video that never rose to the acclaim of My Love Don’t Cost A Thing. Before we took our studio places, the producers informed me that hats weren’t permitted and I’d have to bare my bald head. This was the first time I had gone hatless in public – on national TV.
Again, on Tuesday, because of all the area=½bh and slope = mx+b equations I had scratched on my hat, I couldn’t wear it. I went with bare gusto into the 4-hour test, this time on unglamorous closed-circuited TV. I checked – it’s frowned upon to scream and wave TRL-style into the cameras in the corners of the GRE test room. Not even fun.
In other acronym news, I spent five hours at the PITC (Pediatric Infusion and Transfusion Center) yesterday to get my IVIG (immune system in a bottle). After meeting with Julia, we decided not to take my hickman out just yet since I still have not turned a negative copy level on by EBV virus, but thankfully my CMV virus is still on the DL (here’s Urban Dictionary for that one).
And now to spell that out: while we’re still propping up my immune system and bone marrow with helpful infusions, it’s holding its own in kicking some virus booty. I can almost feel my donor throwing the punches.
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