Wednesday, July 23, 2014

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.

Friday, May 9, 2014

The New Normal Can Be Pretty Normal

I think this last week is the first one in which being a transplant patient just didn't come up. Yeah, I got asked about how I was doing. I have a lot of friends who care about me, but I had to say, "I haven't thought about it."

I take my pills every day, though I hope for them to be reduced drastically on my next visit to Vanderbilt (in July). They are a reminder that something very difficult happened to my body. I still can't run very well. My sprint is a joke, and a quarter mile would be a long jog.

My feet are getting better, though. They burn, tingle and feel numb much less than they did a few months ago. My stem cell transplant doctor tells me that's because we're reducing the steroids.

Otherwise, I just go about my life. Every now and then I have a day where everything is difficult. I don't want to get out of bed, and everything I do is like slogging through swamp. Usually, I just cancel those days and hang out in bed. Nothing fixes it.

Those days are few and far between, though they do happen once or twice a month. It's only been two or three weeks since the last one. Nonetheless, nothing about my bout with leukemia (and especially the stem cell transplant, which was by far the hardest thing) has affected me enough for me to think about leukemia over this last week.

The burning in my feet kept the reminder alive for the last few months, but though they burn some now, and they swell if I sit too much, it's so minor now that I don't think about it. I have to sleep close to 8 hours for the swelling to go away, but that's a habit now.

Best of all, the exercise I try to do every day is finally working! I do odd body-weight exercises because I'm so weak compared to my pre-leukemia days, but now I'm progressing to more normal exercises (like pushups). I can carry groceries in without gasping for breath because of the exertion. I pick things up and move them around like I'm an adult male.

Actually, the strength part was pretty good in the last part of 2013, too. Pneumonia in January of this year sapped an incredible amount of muscle from me, especially considering I was only down for about two weeks. It's May, and I've finally got all my strength back that I had in December.

I work all day without thinking much about it, although many leukemia survivors, especially transplant recipients, never return to full-time work.

I am two years and four months past transplant, and I got a serious preparation for that transplant. I used up my radiation allotment for my whole life. If I ever get prostate cancer, like a lot of men do, there will be no radiation option for me. Radiation worked excellently for my dad. The surgery sounds pretty unpleasant, so my plan is to avoid prostate cancer.

Here I am, though. I'm kickin', everything seems to be working in my body, and I like the new norm. Physically, it's not much worse than the old norm, and in peace and wisdom, I am far ahead of where I would have been without that wonderful intermission in my life we call leukemia therapy.

I'll quit now. For the record, this is written for BPDCN and acute leukemia patients who are still going through treatment and wondering what they have to look forward to. Fight the good fight! Do everything right! You can come out on the other side of this much wiser and only somewhat beat up physically.

Sunday, February 16, 2014

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.

Sunday, February 9, 2014

Recovering Quickly

I don't remember what day I went in the hospital with pneumonia. My guess is that it was 3 weeks ago today.

I did exercises in sets of 2-3 minutes several times today. I danced, I jumped, I did pushups (up to 7 now). I did some squats (with no weight). I did a little work on the car.

To put it mildly, I am surprised at my recovery. My lungs feel great. My stomach isn't all the way better. I had a mild tear, and I'm 52. That doesn't go away in a couple weeks.

Also, a few months ago, the ball of my feet started tingling and growing numb. Not long after that my feet and ankles were swelling up.

The doctors told me the neuropathy (I think that's what it's called) in my feet was the result of the steroids we transplant recipients take to suppress our new immune systems. They said the fluid buildup (the "edema") in my ankles and feet were also from the steroids. They never gave me any advice about what to do about it.

In December sometime, the swelling and a lot of the neuropathy went away.

I'm really hoping that as I get back into exercise, I'm also going to find out that my calves no longer start giving out about a hundred yards into a jog.

We'll see. I can't jog a hundred yards at the moment, but I'm sure I'll be able to next week. I don't have confidence, my calves will be better, but I do have hope.

Thank you for those who have prayed for me. I say that a lot, but I think it makes a big difference. Keep praying for others, too!

Tuesday, February 4, 2014

Pneumonia and Keeping in Touch with All of You!

BPDCN and Counseling

I have gotten a lot of emails and comments on this blog the last couple weeks. I am reminded that there are people who are benefitted both by my stories and by the information on this blog.

I believe that most people in the world who are diagnosed with BPDCN (Blastic Plasmacytoid Dendritic Cell Neoplasm) contact me. A search for BPDCN will find this blog in the top 2 or 3 results almost every time. (BPDCN is pretty rare with only about 200 cases ever.)

I tried my own sun treatment on my skinny legs,
and my skin started peeling away.
Don't do that!


A couple months ago, I got a thank you from the uncle of a Lebanese man who wound up in France for his transplant. The uncle lives in Atlanta. Even though the uncle's family has not only lived in the USA for years and members of his family have served in the US military, the American consulate denied a visa to his nephew so he could be treated in the USA. Fortunately, France provided him with wonderful treatment.

It was a wonderful thank you letter because the nephew with BPDCN has now been released from the hospital ... just yesterday. One more survivor, at least so far. Terrific news!

There have been other not so pleasant situations. I got an email from the daughter of a man who didn't make it. It was a thank you email, too, for supporting her father through his cancer and treatment. Those letters rip my heart out.

Another person I walked through chemo with (by email) was the father of my daughter-in-law. I know all his children better than I know him, but I have known him for years. He's slightly younger than me, and he was in better shape. He had AML (Acute Myeloid Leukemia), which is not BPDCN, but is treated very similarly. He was a great trooper, made it to and through transplant, and then (in my opinion) got GVH (Graft Versus Host) of the lungs. That means his new immune system rejected his lungs and attacked them.

Note: That's how bone marrow transplants work. Unlike solid organ transplants, a bone marrow transplant (BMT) replaces the entire blood system, including all the white blood cells—our immune system. If a kidney is replaced, the recipient has to worry about his/her immune system rejecting the kidney. When we have a BMT, we have a new immune system, so every part of our body is in danger of being attacked.

Note 2: A stem cell transplant (SCT) is the same as a BMT. The difference is that rather than collect the actual marrow of the donor, doctors give the donor a shot that causess the marrow stem cells to multiply so much that they get into the blood stream. Those stem cells are then removed in a five-hour process using a machine very similar to a dialysis machine. Nowadays most marrow transplants are actually SCTs.

This friend/in-law of mine had lung problems with lots of names, but in the end I think it was his immune system attacking his lungs. He didn't make it. It was a terrible thing for the family, but I think especially my daughter-in-law. She had to watch me go through all the treatment, then watch her dad go through very similar treatment and not make it.

I am calling and corresponding with another man with BPDCN who lives only about 6 hours from me. It is such a delight to be able to warn of things to come, give advice, and just chat as a person who's been through what they're going through. He's in his second round of chemo right now. It's always nicer when the outcome is good, of course.

Update on Me


I actually have health news this time. I'm pretty sure it was Sunday, January 12, when I first got sick. I felt miserable, threw up once, went home, and slept it off. I felt better the next day, but I developed a slight cough. On Saturday morning, I woke up, and I knew something was wrong. I can't say I had symptoms bad enough to scare me, but I knew something was wrong. I woke my wife up and said, "I think I need to go to the emergency room."

We made it to the hospital with no problem, but by afternoon I was basically unconscious. I made it through their tests—EKG, x-ray, CT scan—without any real problem, but I went down so rapidly afterward that I don't really remember anything the rest of the day except struggling to roll over when they told me to.



They determined I had pneumonia. Plain ol' no-GVH pneumonia.

I went through leukemia treatments for 10 months away from home in Nashville. (Thank you again to Open Arms, the American Cancer Society, and the apartments we stayed at for providing a home for my family for free for the entire 10 months.) I have fond memories of the whole process, of the people I met, of the family time we had, and of the grace of God that carried me through the process.



I didn't have any grace for pneumonia. The three days of pneumonia was worse than the 10 months of leukemia. Maybe that's just because the leukemia treatments are almost two years in the past, but I don't think so.

I wondered if I was going to die. I wondered if I had squandered the extra time on this earth that God gave me, so he was taking away the second half of my life.

I didn't die. I went in on Saturday, and I went home on Tuesday. My ribs and belly were terribly sore from coughing, but my ribs healed right up over the next couple days. Friday, however, the right side of my belly went to hurting more than ever. It got worse until I had to ask my wife to take me, again, to the emergency room.

It turns out that the antibiotics had thinned my blood so much that my INR was 7.1. Here's what that means. Normal is 1.0. If your blood is 2.0, then it's twice as thin as other people's blood. My blood is supposed to be between 2.0 and 3.0 because I'm prone to blood clots. They give me Coumadin, a blood thinner, to make that happen.

However, the dose I'm on of Coumadin is about as low as they give to anyone. I should not have spiked to 7.1, a dangerously thin blood level. They blame it on the antibiotics; I was taking 3 different ones.

What happened is that with all the coughing, I actually tore my rectus abdominus muscle (the one that gives you a six-pack if you're not as fat as me). The tear was internal to the muscle, or at least to the sheath around the muscle, and with my thin blood I bled into the wound until it was somewhat pressurized. Hence the intense and growing pain.

They gave me a good dose of Vitamin K and it dropped my INR to 1.7 in one day. The bleeding stopped, my tummy began to heal, and they sent me home ... I think on Tuesday exactly a week ago.

I lost 20 pounds during that process. That would be nice, but I'm sure half of it was muscle. Starting over on strength training again! It was already a slow process!

Two or three days ago I thought I would jump onto the first step of my stairs and back down again a few times to keep taxing and clearing my lungs, and to begin the process of getting some of the muscle back that I lost in my legs.

I didn't make it! I couldn't jump onto a 6-inch tall step! Aargh!

I made it this morning, though, and was able to hop up and down 4 or 5 times. I had to start over on the pushups, too. I did four on Saturday, five on Sunday, and six on Monday. I probably have to stay at six for a while because pushups require your stomach muscles to stabilize your body, and I don't want to re-injure that muscle.

Well, enough about me. I'm recovering. I went to work yesterday. I jogged about 50 yards there, taking 2 or 3 little jogs to reach that extreme distance (#sarcasm). I climbed the stairs a few times. I feel alive again, even if my 11-year-old daughter would have no problem beating me up right now. I'd have the advantage for about 10 seconds because I'm still stronger and much bigger than her, but then she could do whatever she wanted while I gasped for breath.

That would be dangerous, too, because she's really flexible and getting stronger because she's learning gymnastics. She comes up to my chin in height, but she has no problem kicking several inches higher than my head.

Okay, enough about me. Sorry for not staying in touch more. I'm going to back through this post and add pictures now.