The Lonely Donor, Part III: Postponed

Germ-free and living large.
Germ-free and living large.

You have been cleared to donate, but the patient is not ready to receive your gift at this time.

That time was to have been this week, or thereabouts, and now who knows when it’s going to happen. My donation has been deferred… again.

I would like to say that I had been training up for this moment, like so many triathlons before: Monitoring my food intake (high potassium, calcium and magnesium – low saturated fats); denying myself the pleasures of drink; ensuring proper hydration; getting plenty of sleep and avoiding any reckless shenanigans that might jeopardize my ability to give.

In truth, it’s not hard to register to donate bone marrow or peripheral blood stem cells (PBSC – the method I’m scheduled to undergo) or even to undergo the procedure. Can you sacrifice a little bit of time? Yes. Overcome a slight aversion to needles? Of course you can. Forgo running with scissors or jaywalking? Seriously?

Looks like you might be a match, friend. Here’s the criteria:

  1. Be between the ages of 18 and 44, but not older than age 60. Ninety percent of donors are between ages 18 and 44. I’m 42-and-a-half. IF YOU’RE UNDER AGE 60, GO AHEAD AND SIGN UP.
  2. Be reasonably healthy, i.e. no intravenous drug use, no Chagas disease (you’d know it if you had it), no exchanging sex for drugs or money. Seriously, if I can make it past all the health hurdles after swimming repeatedly in Tempe Town Lake, you should be fine. SO GO AHEAD AND SIGN UP.
  3. Live in the United States or Puerto Rico. Other countries have their own registries and this is ‘MURICA! So keep your American marrow in your fellow Americans, and SIGN UP NOW.
  4. Forgo that extra seven-dozen donuts. They have a weight limit for potential donors, based on your height, and it’s more generous than the seat-belt extender on a commercial airliner. I still have more than 100 pounds to play with, so don’t let that extra 15 or 30 pounds dissuade you. GO AHEAD AND SIGN UP!
  5. Don’t be pregnant. You can’t donate PBSC or bone marrow while you ARE pregnant, but you can donate BEFORE you get pregnant, and you can also donate AFTER your precious darling is foisted upon this world.  SO YOU MIGHT AS WELL GO AHEAD AND SIGN UP.

These are not high hurdles to overcome. You have to clear more prerequisites to get a driver’s license or vote in Arizona (but not to buy a gun). Pretty much anyone can bring life into this world (see, the Duggers)… but how many can say they saved a life that’s already here? Sadly, not that many – which is why we need more people like you on the registry.

I was not particularly brave, lo, those 20 years ago, when I signed up for the Be The Match registry. To tell you the truth, I was a victim of peer pressure — the same peer pressure  I’m trying to leverage on you. I was training for a marathon to benefit the Leukemia and Lymphoma Society. We had a fund-raising event, and all the cool kids were signing up for the registry. I had a finger-stick and figured I’d play the odds since just 1 in 540 people on the registry ever go on to donate.

Yeah, they needed another tray to hold my A-negative loveliness.
Yeah, they needed another tray to hold my A-negative loveliness.

I’m not special: I’m just 1 in 22,210,800 Americans with A-negative blood. Even then, being a match has more to do with whether my human leukocyte antigen matches the patient’s than does my blood type. It’s a numbers game: The more people on the registry, the more potential matches for any blood cancer patient in need of a transplant. Because of the great melting pot that is ‘Murica, Be the Match needs a racially and ethnically diverse donor pool since matching is most dependent on a person’s ancestry. So get yourself on the registry and help a sister or brother out!

Signing up for the registry is not hard. Being screened to donate is not hard either, but it can be confusing.

Back in November, I received the call that would not change my life very much at all: 40 or so intrusive questions about my behavior for the past 20 years with a request for a blood draw. I would learn in 60 days whether I was a match for an anonymous male patient with blood cancer. Other people on the registry  were also contacted and asked the same questions and then submitted to the same blood draws so doctors could determine the best match among us.

Exactly 60 days later, I got a letter:

The results of your testing indicate that you and the patient are a suitable match; however, the patient is not ready for a transplant at this time… There is a possibility that the patient’s situation could change quickly and they may soon become ready to receive a transplant. If this is the case, we may contact you again.

You are relieved of your obligation. Thanks for playing. Go live your life. Damn.

Five months later, I got another call that would not change my life that much more… It would only transform me into a crusader for Be The Match registration: All I had to do was answer the exact same 40 questions that would either be the most elaborate identity theft scheme of all time… or the long-awaited chance to help a brother out. Finally! And he is the same brother I tested for back in November!

Would I read through this 60-page packet of disclosures and documentation, review it via phone with my donor adviser, sign here and here and here… and here… and here… and return it via the postage-paid FedEx mailer? Sure! Could I be at Mayo Clinic in late June to undergo further screening? Of course! Would I be available in mid-July to undergo a PBSC donation, if I was cleared to donate? Hell-to-the-YEAH!

Despite my best efforts (and through Mayo Clinic’s best efforts), I was thrilled to learn that I have managed to make it to age 42 in reasonably good health: I got the full Monty work-up – blood tests, full physical, urine test, EKG, pelvic exam, pregnancy tests, chest X-ray – ALL PAID FOR BY THE NATIONAL MARROW DONOR PROGRAM. How cool is that? Through appointments for five different screenings, I never got to the second paragraph of any month-old magazine article I started in the waiting room: They pulled back the velvet rope and let me saunter on through. “Thank you, thankyouverymuch! Marrow stem-cell donor, coming through. Just gotta go get my EKG so I can get cleared to unselfishly relinquish my uber-juice! Step aside, please.”

That would be Anthony. He did my chest X-ray.
That would be Anthony. He did my chest X-ray. I didn’t have to wait for him, either.

And don’t think I didn’t milk that status for all it was worth: Interminable all-staff meeting? Oh, yeah, sorry, can’t make it — I gotta go get screened so I can DONATE BONE MARROW STEM CELLS. Help a friend pack and move? Oh, gosh, I would but I don’t want to risk injuring myself which might render me unable to DONATE BONE MARROW STEM CELLS. Folding laundry? Well… Pat didn’t actually buy that one, but two outta three ain’t bad.

Suffice it to say, donating bone marrow stem cells is the biggest humble-brag  in the universe – especially since it’s SO EASY to sign up, and apparently, it’s not that big of a deal to undergo (It’s not like they’re cutting out a kidney: Marrow grows back). You just have to stay healthy and wait for the phone to ring (which, in my case, was 20 years) and take some tests to see if you are a genetic match (your chances are about 1 in 10 if you get the call) and wait to see if you and the patient can actually go through with the donation (sigh).

Which brings me to this week: I’d cleared the decks for mid-July to undergo a PBSC donation – a slightly uncomfortable (hello, bedpan), very low-risk procedure that is not unlike donating plasma. Basically, I’d queued up a Game of Thrones marathon on my laptop for the 6-or-so hours I’d be strapped to the chair while a machine took my super-stimulated stem-cell rich blood from one arm, centrifuged out the stem cells, and put my clean A-negative back in the other arm. (I was hoping they could give me some Lance Armstrong boosters for the Tour de Scottsdale in October, but no such luck). I’d be tired the next day. I’d likely be achy from the stem-cell stimulating drugs I’d start taking five days prior to the donation. I’m sure I’ve had worse hangovers than the level of pain I’d set myself up to endure.

In truth, I’d hoped to live-Tweet the whole thing, but apparently I would not be able to type since I’d have hard-core lines in each arm. So instead, I’d just be sitting in a recliner, watching TV for 6 hours, and possibly dozing off. In other words, my standard level of Sunday afternoon activity.

Again, people: I haven’t been through that part yet, but it doesn’t seem that difficult or even heroic, given the fact that ALMOST ANYONE CAN DO IT – INCLUDING YOU!

So signing up for the registry isn’t hard. Undergoing screening to see if you are a match isn’t hard. The procedure I’m scheduled to undergo doesn’t seem very hard at all (watching TV, sitting in a chair – I got this!) So what has been the hardest part about this?

Tom Petty was right: The waiting.

I have wanted to swaddle myself in bubble-wrap these last few weeks. Every decision runs through the matrix of what it might mean for the patient… the brother I’m helping out. Do I ride my bike and risk impaling myself on a cactus or a car?  Do I take that call while I’m driving, even though I’m wearing my hands-free head-set? Eat that sushi? Have that beer?

The Mayo visit, thankfully, wiped out the creeping hypochondria that had overtaken my brain like Chagas-diseased kudzu: That cough? Could it disqualify me? What’s this spot on my shoulder? Melanoma? What is this tickle in my throat? Could I be pregnant?

What brought it all home was talking with the physician at Mayo: “As a donor, this is voluntary. You are giving a gift. You can back out at any time, but you need to know that after we clear you today – if we clear youthis is the point of no return for the patient.

He would begin the preparative regimen of chemotherapy and possible radiation that would wipe out his blood-making bone marrow and erase his immune system so it couldn’t attack my transplanted cells. GULP.

“If you pull out after today, you might as well hold a gun to the patient’s head and pull the trigger.”

Apparently, another “donor” pulled out THE NIGHT BEFORE THE SCHEDULED TRANSPLANT. I would like to hold a gun to that person’s head… but I digress.

I’m all in, I told her. Whatever happens, I’m here.

This is what I think about at 2 in the morning when some imagined slight at work has interrupted my slumber, and I spin in a rotisserie of unfinished business, unsaid comebacks and silly, stupid, senseless stuff.  It’s not that big a deal. A big deal is what this dude is going through.

Friends have mustered their many prayers for me. I am grateful, but I deflect them: Send them to him. The patient. The dude. I don’t even know his name, but God should. I know  that as frustrating as this wait is for me, it must be staggering for him.

I do not know the reasons for this postponement – and I may never know. I’m told it could be five weeks or more before we reschedule. It’s nothing I can control or influence. So save your praises. This is not hard for me. It’s hard for him – the brother I desperately want to help out. Let us fervently hope that I get to help him out – not for me – but because the alternative is nothing I want to consider.

Hold on, Dude. I'm coming. Just hang in there.
Hold on, Dude. I’m coming. Just hang in there a little bit longer.

 

5 thoughts on “The Lonely Donor, Part III: Postponed

  1. Yes, as Indiana Jones said, “this is serious.” You are so lucky to have the chance to do something so wonderful, and we are so proud of you.

  2. You are doing a wonderful thing Stacy. Oscar had Mantle Cell Lymphoma, and some patients were fortunate to get transplants. It is not easy on the patient . Prayers for the patient, that he will be strong enough for the transplant soon. Blessings to you.

  3. Thank you, Mary. Oscar was such a great man. It breaks my heart that he’s not here to support you. I’m hopeful that my pleas will get more people to sign up for the registry. It’s basically a numbers game and one that we can win. You are in my prayers, my friend. Thank you for yours. Be strong. Love you.

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