BPDCN and CounselingI 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.