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This is a Story About Blood

Ten years ago, I decided to start fencing. Again.

I was out of college, living in NYC, and doing the things young adults do with all that newfound free time. Namely, working, having fun, and not much else. Adventure Sports Boy, who I was dating at the time, was dismayed by my sloth.

“Why not start fencing again,” he suggested.

Despite having been the captain of my team in high school, I was never particularly good. (“Captain” doesn’t necessarily mean “the best.” It generally means “people will listen to you if you boss them around.” So there ya go.) In college, I fenced J.V., and did passably. But dig hard enough and one can still discover my Varsity record: 1-19. I was that bad.

Still, I enjoyed the social aspects of it – fencers have a reputation for being goofy, interesting, and, yes, extraordinarily geeky people. So I fit right in with the folks in that latter category. Exercise, however, is difficult for me without something to spice it up (“pub crawls” are more my speed) or perhaps someone to force me to go. Coercion works, too.

“Really,” Adventure Sports Boy prodded after a failed attempt at mountain biking. “Why don’t you try fencing again?”

I’d like to say I thought this was a brilliant idea, but mostly, I just wanted him to think I was as awesome as I thought he was, so I said, “That’s a brilliant idea!” and joined a local club. I started working out and competing informally once or twice a week. It was great fun.

And I was still as horrible as I remembered-- and I had the bruises to prove it.

The basic principle of fencing, as most people know, is “Stab them before they stab you.” This involves knocking the other person’s sword out of the way, in a move called a “parry.” Generally, parrying your opponent’s weapon into your leg, which is typically covered with only a thin pair of hospital-white “knickers”, is a bad idea: a guaranteed recipe for “Ow, that fucking smarts!”

I was extremely good at this move.

And so, I soon had the memory of every clumsy parry beautifully drawn on my legs in human tint. All shades of blacks, green, blue, yellow, reds and purples. I was actually quite proud of how one particular bruise looked like a Goth rainbow, a warped bulls-eye that started in the center of my thigh and radiated out towards the side and around to the back in progressive waves of color.

I had smaller marks, too, from where my enemies would successfully thump me, on or off target.

Actually, there were kind of a lot of those funky marks. I knew I was bad, but I didn’t remember being quite that bad. But, who knows, I thought. I was out of practice. The people at the club were the types who were serious enough to buy their own masks, full suits and weapons and spend their weekend nights fencing. I owned my own glove, and came on Tuesdays.

So of course I sucked in comparison!

A different explanation came not long after a frantic message was left on our house answering machine, by a doctor who clearly needed to brush up on the laws of confidentiality.

“CALL US IMMEDIATELY! THERE IS A PROBLEM WITH YOUR BLOODWORK! AAAAAHHHOMG OMG OMG!!!!” she shouted hysterically into the tape.

It turns out, a routine test showed I was markedly deficient in platelets – the things in your blood that helps it clot.

So, in reality, I wasn’t bruised because I was a bad-ass fencer, or even just a bad fencer. I was bruised because my blood no longer could clot normally, and was pooling under the skin. (Now how sexy is that?)

I was told to stop fencing immediately. In fact, I had to stop, uh, moving.

“If you sneeze, you could DIE!!!!!!!!!” panicked the doctor who’d seen the results. “Don’t bump your head! You could HEMORRHAGE!!! AAaahhhhHHhhnggggnggghh!!!!”

In the end, that doctor was rather histrionic, and, luckily, my platelet level was not quite in the "don't breathe" category of dangerously low. But, she was right in some senses: ITP, or idiopathic thrombocytopenic purpura – where a person’s own immune system begins to destroy her own platelets for an unknown reason -- can be dangerous or even deadly if the counts get too low. In its aggressive forms, it can be terrifying.

My treatment consisted of basically nothing but monitoring and the occasional bit of panic. I had daily, then weekly blood draws to monitor my levels for the next six months. My lunch-break phlebotemist was pretty much the hottest guy on the planet next to Adventure Sports Boy, which meant I actually looked forward to getting poked with a needle once a week.

I spent several years getting monthly draws (with progressively less-cute phlebotemists); then quarterly draws, bi-annual, and then, annual. And finally: Ladies and gentlemen, we have remission!

But I was lucky. The standard treatment if ITP does not spontaneously remit is prednisone, an evil drug that can causes weight gain, “moon face,” acne and other lovely physical side effects while at the same time can make sane people question reality, and happy-go-lucky people suicidal.

Next is spleen removal. Sometimes, chemotherapy is tried. And finally, a bone marrow (or stem cell) transplant.

Huh? You may ask. Isn’t a bone marrow transplant treatment for leukemia?

Why yes, it is. Leukemia, childhood cancers, and more!

The stuff we think of as “bone marrow” is truly amazing. Donated cells that turn into bone marrow can be used to treat lots of immune-disorders that affect the blood including ITP, Sickle Cell Disease, Severe Aplastic Anemia, and a crazy disorder called HLH.

Last summer, I got a call from my old friend and co-worker Jo. We try to see each other every year or so when I return back East, but, being busy non-phone folk and 3 time zones apart, we don’t talk too often.

Jo was was calling with bad news. Her daughter, Diana, had been diagnosed with HLH – or, in long form, “he-mo-fay-go-sy-tik lim-fo-his-ti-o-sy-to-sis.” We prayed for successful treatment, recovery, and, if it came to that, a bone marrow or stem-cell donor.

Luckily, Diana is doing well on her regimen of immuno-suppressants and chemotherapy. But there are tons of other HLH kids -- along with those with leukemia and other blood disorders -- out there desperately searching for matches. Look around at your friends and family: everyone has been touched by blood disorders and cancers; we all know someone who has or who may benefit from a bone marrow transplant.

Finding a match is not easy. And finding a match for Diana would be even harder: her mom is of Chinese ancestry, and her dad, African-American. Donors with mixed-race ethnicity make up less than 3% of the donor base. There are simply not enough potential donors in the national registry, of any ethnicity.

We need you.

The first step is to learn about donation. More and more often, stem cells are collected directly from the blood -- not your bone! -- during a nonsurgical procedure. The procedure is almost the same as donating blood!

The next is simply to register. http://www.marrow.org.JOIN/index.html

Tomorrow, Tuesday, Febrary 9th, I’ll be walking with Jeana Moore, the grateful grandmother of Jada Bascom, a 2 ½ year-old girl with leukemia and a bone marrow recipient. Jeana is an amazing woman who is walking across the United States as a part of the Jada Bascom Foundation's effort to raise awareness and recruit donors for the National Bone Marrow “Be The Match” Registry. Her goal is 20,000 new registered donors by New York, one year from now.

As many of you know, I believe in the power of pilgrimage as a catalyst for change. I’m hoping my small effort of 3 miles through Golden Gate Park can raise the humble goal of 3 new registered donors from among my friends.

Email me (travelingdina @livejournal.com), call, text, or comment via Facebook or LiveJournal to show your support, and let me know if you’d like to "Be The Match" and join the National Bone Marrow Donor Registry.

I’ll carry your name along with Diana’s picture while I walk. And perhaps a tell a funny story about you, shall you grant me permission. ;)

As for me, I can’t donate bone marrow: ITP means my immune system, and bone marrow, is too whiggidy-whack.

But as long as I have hope, I can walk.

And as long as I have enough platelets, I can donate blood.

I’ve already given my 2nd pint, and it feels terrific!



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Comments

(Anonymous)
Feb. 9th, 2010 11:30 am (UTC)
blood
Wonderful story, beautfully and artfully told
travelingdina
Feb. 9th, 2010 12:07 pm (UTC)
Re: blood
thank you!
(Anonymous)
Feb. 9th, 2010 03:59 pm (UTC)
Dina, I had no idea you had ITP--that's crazy. Your story really made me want to register to be a donor, but I have to admit that after looking through the National Marrow Donor Program website, I'm a little bit freaked out.--Claire
travelingdina
Sep. 7th, 2010 10:01 pm (UTC)
Most of the time, you donate simply by taking some medication which ups the number of stem cells in your blood, then you donate that blood, and they skim off the stem cells. Very few actual "needle into the bone" marrow harvesting is done these days -- just out the vein! Yay!

Edited at 2010-09-07 10:01 pm (UTC)
sylrayj
Feb. 9th, 2010 04:17 pm (UTC)
You, hon, are fabulous. I know that some days you don't feel it, but I know you are. Thank you for this, and for being you!
travelingdina
Feb. 10th, 2010 05:35 am (UTC)
Hugs to you! xoxoxo
mhaithaca
Feb. 9th, 2010 05:33 pm (UTC)
I'm a registered marrow donor! And a frequent blood donor. And I, too, know the frustration of progressively less-cute phlebotomists. You'd think they'd work on that.

Can I donate a few bucks somewhere to support your walk?
travelingdina
Feb. 10th, 2010 05:34 am (UTC)
Yes! Go to Stepstomarrow.com! Actually, she has a livejournal: stepstomarrow.livejournal.com :)
mhaithaca
Feb. 10th, 2010 11:30 am (UTC)
Done! Thanks. :-)