The Good News

I still have that damn virus, but it is under control… just not dormant like we want it to be. So they cultured it again and are testing it to see what strain it is. Apparently, there are several subtypes and only a certain type of medicine will finally “kill” it. Could they have done this earlier? Hell yes, but the insurance company would not pay for it unless we jumped through these hoops first. The right medications are more expensive… and we all know they want to save every dollar they can. I don’t get their economic sense, as it seems it would cost more to do it this way, instead of the “right” way that my doctors would have done it. Anyway…

plateletsOther good news! My counts are finally starting to make positive ground. My platelet count, the one we have been so concerned about has hit an all-time high, 88,000. So we are half way there. Hopefully! It will still take another year or longer for them to become truly “normal”. So it’s going to be a while before I actually am healthy and well again. Which leads to the “not so much” news part of this update.

The “Not so Much” News

While in St. Louis, they did a Bone Density test. Because of the steroids and chemo I have developed Osteoporosis in my spine and hips. Apparently, this is not just a “mild” case, like all the other complications that I have gone through over the past year +. My spine is so brittle (fragile) I have to go see a specialist and I will simply quote the report I received: “WHO Classification: Fracture Risk – High”.

SpineImagebigSo what was supposed to be a two hour appointment took 8 hours and I got my first treatment of some drug to pull Calcium and Vitamin D back into my bones. Unfortunately, it is not just one treatment and I’m back to new.

Just like Physical Therapy was going to take six month to get me back in shape, this is more like a one or two year process, if it works. My doc also said if it did not look like it was making progress they might have to use a “black box” drug. I don’t think I want to go down that road.

The “black box” is a familiar idea in physics, otherwise known as Shrodinger’s Cat. Where they put a cat in a black box and the question then becomes, “when they open the black box, will the cat be alive or dead.” You don’t know until you open the box. So the treatment drug could cure my spine or kill me. And there is no way for them to tell which it will be. That sounds like Fun! Let’s play Russian roulette with one bullet and the gun is a sawed off shotgun with two chambers.

I don’t know any more than that until I see the bone specialist. I don’t have an appointment yet, so everything is up in the air. My doc said two things very sternly, “Be very careful” and “Don’t Fall”. That tells me actually quite a bit. I do NOT want to become a quadriplegic.

I may be “cured” of MDS, but these complications from the transplant are a serious pain in the ass. And remember, I still have GVHD and will for the rest of my life. This only adds another large, and serious, and unpleasant side-dish to my plate. I’d like to say I can see a silver-lining in this new complication, but I don’t think there is one.

3 Comments

  1. Linda Senenfelder

    Hi Mark,
    We are up at my brothers and his wife Jan has a sister who has had a bone marrow transplant 3 1/2 years ago. She gave me her e-mail address. I am sending it to you if you would like to talk to her. She has been talking to groups of people about your MDS. It might be god for you to talk to someone who has been through what you are going through.. Hope it helps you

    Her e-mail address is

    [I copied her email address and removed it from the blog, so she won’t get spammed – Mark]

    She knows about you and is expecting to hear from you. Good luck and God Bless you all.

    Love Always ,

    Linds

  2. Linda Senenfelder

    Mark if you could send me or Kathy your phone number she would like to talk to you.