Sunday, August 11, 2013

High Speed Catch Up

I have to drive about 80 miles to work in the morning, so this is going to be a quick post. I am WAY overdue.

First, we moved to Cordova, a suburb of Memphis, which is why I'm driving 80 miles to work. I can telecommute 2 or 3 days a week, so that will work out okay, I hope.

I have met more neighbors in this partial week we've been here than I've met in my entire adult life (except at Rose Creek Village, of course). Tonight, I met the parents of an 8-year-old girl named Julia Cobb, who underwent a stem cell transplant (SCT) about 45 days ago. She doesn't have a blood cancer, like most SCT recipients. She has a type of "sarcoma." See Julia's story because I don't really know what that is except a solid tumor that started on her shoulder blade, was treated, relapsed, and then came back in several spots in her body.

I was so excited to meet them, and I really hope we get a chance to be a help to them. The father is a cancer survivor, too. His mother-in-law had exactly the same cancer, an intestinal cancer near as dangerous as pancreatic cancer, which is deadly. They went through treatment at the same hospital at the same time. He made it, and his mother-in-law didn't. Later his mother also died of cancer.

Nonetheless they were jovial. It was such a thrill to meet them, and to find out God put us three doors down from them!

Ok, real rapid update on me.

My treatment for my acute GVH, which worked pretty well, was to sun my lower legs and forearms, two or the worst rash areas, for 5 to 10 minutes per day. I have had almost no rash, rather than usually having rash an all my lower legs, half my thighs, a third of my trunk and on most of both arms.

Nonetheless, on Friday my NP--the wonderful and beautiful nurse Catherine--just about went into shock when I told her what I'd been doing. She hid it well, but she was horrified. She casually got the doctor as normal.

Dr. Savani came in saying, "We understand Dr. Pavao has prescribed a treatment, but we don't know this Dr. Pavao, and we don't think he is approved. So we are going to use the Catherine and Dr. Savani treatment. Haven't we warned you from day one not to be in the sun? Did we forget to tell you over and over to stay out of the sun?"

Seems I do remember that, but ...

He wasn't interested in "but." (I suspect he wanted to say "butthead.")

He explained that the danger is that I would move on to chronic GVH, and specifically a form of GVH rash called "sclerosis," in which my skin would harden like dry leather, restricting movement and being impossible to treat.

His lecture went on for a little while, and I sheepishly agreed to stop Dr. Pavao's treatment.

When we were leaving, my wife said, "It's possible they know some things about GVH and the sunshine that we don't know about."

I howled with laughter. Yeah, okay. I admit that eight years of medical school and years of daily experience with transplant recipients might give them a slightly better idea about sunshine and GVH than I have.

Otherwise, he said my blood counts are normal for a guy taking the medication I'm taking. He said I'm doing "100%"! (That should be pronounced with an Indian accent to get the effect.)

I don't get to drop my Prednisone (steroid) this time because of my sunshine treatment. Bad boy!

He also said, "No one can ever say 100%, but you are very unlikely to relapse."

So, I'm embarrassed but alive and apparently likely to continue to live ... if I stay out of the sun.


  1. Wow!! I've gone from LOL to tears in my eyes. Praise the Living God!

  2. I just wanted to let you know how happy I am that you have survived this horror of a disease.
    A good friend of mine was diagnosed with BPDCN this past may. It is believed he was exposed to it during the 3 weeks he spent at ground zero. He was a first responder. It has been very difficult finding a bone marrow donor as of yet. I have always known him to be very strong, I hopehe can find a match very soon.
    Would you please keep him in your prayers, His name is Steven Bonano, NYPD.
    Thank You and God Bless You!
    Loretta Leo

  3. Yes, I will, Loretta, and this blog still gets 150-200 visits per day, so I'm sure others will as well.

    Please feel free to keep in touch. There's only around 200 people that have ever been diagnosed with BPDCN, and I think that the majority of the newly diagnosed find this blog and contact me. There's a Lebanese man getting a transplant any day now for BPDCN. He's only 22, and he's getting the transplant in France.

    His name is Peter, and he had a lot of trouble finding a donor, too. (So did I, and I wound up with cord blood from a donated placenta and umbilical cord.) We will definitely pray. Please feel free to keep in contact, ask questions, and email me (paul at christian-history dot org).

  4. Hurray for living! Boo for having been in the sun too much. You know better than that! :/ Congrats on the move but can't imagine driving 80 miles to work. I can't even imagine working full time yet! What a blessing that God relocated you near other transplant folks where you could be an encouragement. (Sorry I'm so behind in reading posts!) Hope all is well. Isn't it great to be alive! :)