Marrow Donors and Transplants

I haven't posted on here in a long time. There are some leftover issues, of course, but leukemia/BPDCN is pretty much in the past for me now. My "new normal" is a whole lot like my old one except that I'm slower and can't run very far.

Anyway, some asked me about being a marrow donor, and this discussion of bone marrow or stem cell donation seemed pretty informative, so I'm posting it here, too, just in case you find it helpful.



How to Donate Marrow

Just go to marrow.org and sign up. They will mail you a donor package with lots of information. You swab your cheek, put it in, uh, something they sent you, and you send it back. That's enough to find out if you _might_ be a match. That's it. The likelihood they'll call you is pretty slim. If they do, then they'll want blood to check your DNA for 10-14 genetic factors. If you're an exact match, or really close, and you're the only one, they'll call you. Giving marrow is, literally, a real pain in the butt for about a week. "Feels like a mule kicked you in the backside," I was told. Nowadays, they usually take stem cells. They give you medicine for a week that makes your marrow run wild and its stem cells pour into your bloodstream. Your bones ache for a week, and then they take the stem cells out with a machine very similar to a dialysis machine, the ache goes away, and you go home.

That's the whole process, but only 1 in 500 people who sign up are called on as donors. It takes that much to find "the match." So, for the most part, your action is just to order the kit and send in the swab. Easy.

I know of someone who had 50 people come up on the list as potential donors. Only 3 turned out after blood tests to both be willing and to be a good match. One turned out to be a perfect match.

For me, they found 3 potentials in the whole world and none of them were a workable match after blood tests. My brothers were a complete mismatch, and my sister was the lowest acceptable match. Fortunately, nowadays women donate their placentas and cord (at some hospitals) and cord blood doesn't have to match near as well as adult blood. I got cord blood, which is usually not preferred, but for someone as harshly prepped as I was, the immature baby immune system that those  stem cells created in me turned out to be a blessing. It's not as strong as an adult transplant, so it kept me a little safer.

Is this TMI? This process is amazing to me. Some people really need an adult transplant because the new immune system has to go in and destroy any lurking cancer cells. They thought I was healthy enough and had a good enough attitude that they would just use a scorched earth policy on every possible hiding place they could think of. The baby immune system didn't have anything left to clean up.

Sometimes there is a battle between what is left of the patient's marrow and the donor marrow. I have a friend almost three years after transplant who still has 2% of his own old marrow. Not me. I was 100% donor the first time they checked because they did an excellent job getting my marrow to 0% even before the transplant.

Exercise: We Can Do This!

The 30-degree weather seems to have moved on. It feels like a warm, summer day, but the high 50's temperatures today are actually just average for February in west Tennessee.

I was so excited for the sun and warm weather, but it's been so long since I've seen the sun, I forgot what it's like for me. I can't let it shine on my eyes, and I have to wear sunblock all the time and stay in the shade as much as possible.

Doctors tell me "as much as possible." I agree, "as much as possible." I have a sneaking suspicion we don't mean exactly the same thing by that phrase.

So today I felt recovered enough to go to the gym. I am thrilled and give thanks to God because while I hoped to recover from pneumonia in a couple weeks or a little more, it seemed hard to believe that was possible for a beat-up, almost-old guy like me.

Possible.

I was very disappointed to find out my lower legs are still the same. I was fantasizing that because my feet felt so good, and so not swollen, while I was mostly laying down that it would translate into some full recovery of blood flow to the lower legs.

Nope.

I got on a treadmill, and I walked a half-mile at a 20-min/mi pace. I figured that was enough warmup, and I broke into a very slow jog (4.5 MPH on the treadmill). I had no problem with my breathing, but my heart rate jumped up to 144 after one minute.

I had to quit at one minute of jogging. The bottom of my feet were hot like someone was holding a candle under them, and my calves were beelining towards a good charlie horse.

Still, 30 days ago I was trying to find the oxygen and energy to roll over for the doctor. The roll was agonizing, and I was so miserable I was barely conscious. Today, I was on a treadmill! I ran a minute, and I walked a mile!

Small goals for a guy who ran 31 miles in 7.5 hours just 7 years ago. I was dream of 135 miles across death valley back then and hoping to do longer ultramarathons to work up to "The Badwater."

I put in a little weightlifting, including some 60-lb. lat pulldowns across from a guy who looked like he bought his biceps from a butcher shop and who was yanking his 250-lb. body up and down on the pullup bar. I thought, "Don Knotts would try to do something really impressive here and look like an idiot. That would probable be more fun than sitting here hoping he doesn't notice my tiny weights going up and down on the pole."

One good thing about the pneumonia. My oncologist saw me on Thursday, and now he was as concerned about unbridling my baby immune system so it can be strong enough to dodge the next pneumonia as he is about my recurring skin GVH. After six months, they let me go down 2.5 mg (about 17%) on the Prednisone.

Here's to a slightly less stimulated appetite and less muscle-eating steroids.

Yeah, we transplant survivors get steroids that cause weakness, not muscle growth.

This sounds like complaining, doesn't it?

I'm updating my friends, and hopefully, I'm encouraging other leukemia/cancer patients/survivors.

I'm not really complaining. I am incredible fortunate. I am in comparable shape to a lot of 52-year-olds that haven't been through what I've been through. I can work. I can easily spend 10 hours a day doing things, often more, without having to lay down. That's not amazing two-years post-transplant, but it is better than normal.

I have the best caretaker possible. My wife is wonderful, and she not only never accuses me of being lazy or useless, she even gets mad at me when I accuse myself of either.

I have great friends, and I can't even mention them here because if I mention one, I will leave at least 20 or 30 close friends out and many more good friends out.

I do not, and I have not at any point felt sorry for myself. I did pout one particularly bad day in November of 2012 (yeah, so bad I remember the month) and just cry out to God, "Please stop hurting me." I was exhausted, had an ingrown toenail that was throbbing, a painful blood clot in my right calf, and I had been forced to work because of a problem that arose. While working, and in a lot of pain, I scalded my hand with steam.

I may have been guilty of feeling sorry for myself at that moment.

Otherwise, it would be embarrasing to feel sorry for myself. I have been to slums in India, Kenya, and Ethiopia. I have been to small, poverty-stricken villages in Africa and Myanmar. Let's not stop there; I have talked to homeless people in California and west Tennessee. It's worse in Tennessee because it's colder and wetter.

I have not suffered, at least not much.

To Fellow BPDCN Patients or Survivors

Final comment, for those newly diagnosed with BPDCN. I love the fact that so many of you contact me. I love dispensing hope, and even my hope grows as I hear about the successes of others. There's a 65-year-old man in Kentucky being treated with glowing results so far. I just passed the two-year mark post-transplant without relapse, and many others have done so over the last five years.

I got to refer one man to my own oncologist at Vanderbilt, where some of the leading leukemia research is done, and I got to refer another lady to an organization that helps cancer patients find help for their needs. My oncologist is helping with the treatment of the man long-distance, and the organization (UCAAN) was able to help the lady with her particular need.

So excited. And for you healthy folk, don't forget that you can BE THE MATCH and save a life ... like mine. Or maybe even like that guy in Kentucky, who still needs to find a marrow donor. Within a week, you could be on the list they're looking through for him. Ages 18-60 are eligible, and it's free and painless to sign up. If you actually become a donor (less than 1% chance), you're going to be pretty sore for a  week, but it is not dangerous.

Well worth it to save a life.