“Hi! Do you support the eradication of Bone Cancer?!”
This clearly rhetorical question was delivered with such high-pitched guilt inducing enthusiasm that I was tempted to turn right around and walk away.
I had decided to sign-up the previous day, after receiving an e-mail about a bone-marrow drive and chatting with my co-workers about it, who dutifully assured me the chances were slim, the new system of donating painless, and they would never call. I was told it was a 0.05% chance your tissue type would be a match to someone else.
And besides, the annoying co-ed behind the table assured me, “You can always change your mind later anyways, if they call you don’t have to do it you know!”
And so, tying to give her as few annoyed and disbelieving looks as possible, I fill out a form, get my cheek swabbed for DNA, and become a donor! I’m simply listed in the Be The Match Registry until my 61st birthday, and if someone who has cancer needs a bone marrow transplant I could be called to donate if I choose…Then I read the fine print.
Q: What is my commitment if I join?
A: When you register as a bone marrow donor with DKMS, you make a commitment to:
- Be listed on the Be The Match Registry® until your 61st birthday, unless you ask to be removed
- Donate to any searching patient who matches you
- Keep us updated if you have significant health changes or you change your mind about being a donor
- Respond quickly if you are contacted as a potential match for a patient.
- You have the right to change your mind about being a donor at any time. Should this happen, you must notify us immediately so we can remove your information from the registry. It is devastating to patients and their families should you wait to back out after you are a match.
So basically, don’t register if you aren’t prepared to donate. And apparently no, you can’t change your mind later. Unless that is (they insinuate), you’re completely heartless. I don’t have anything against very enthusiastic advocates trying to make their sign-up quota, but don’t mislead susceptible students who often bow to peer pressure, sign up to shut you up, and proceed to forget they did so for years possibly until they get a call. Sure, this is highly unlikely, but it the more unsuspecting people sign up without knowing what they’re in for, the greater the chances that some cancer patient already struggling for his/her life will get a let down at the worst possible time. So please, if you’re going to be a cancer advocate, be a little conscientious please.
I hope I am prepared if it does happen! I got somewhat cold feet while reading the donation process after I had already registered….
The painless method: PBSC Collection is a non-surgical, outpatient procedure that takes about 4-6 hours on 1-2 consecutive days. Donors receive daily injections of a synthetic protein called filgrastim for 4 days before, and on the day of the collection. While taking filgrastim, many donors experience flu-like symptoms such as headaches, bone and muscle achiness and fatigue.
The painful (I mean also painless?) method: Liquid marrow is collected from the backside of the pelvic bone (not the spine) using a special syringe. Donors receive general anesthesia so no pain is experienced during the marrow extraction. This is a 1-2 hour, outpatient, surgical procedure. Many donors experience some pain, bruising and stiffness for up to two weeks after their donation. Within a week of donating, most donors are able to return to work, school and many regular activities.
I guess nothing worth doing is without risk…but I think if any procedure requiring general anesthesia, which is scary enough in itself, should be carefully considered. They also casually mention most donors need to take a week off of work, possibly more. I don’t even take a week of work when I’m sick. The more I read about this, the more wary I’m becoming. I suppose it’s not like donating a kidney or anything, but it’s nice to know more details. I guess informed consent doesn’t apply to signing up for donations like this one.
Well if they called me I would do it! I just hope I wake up and can walk afterward.