Intro

Terri and I feel it is time to put the blog Just Flow on the shelf and for now call an end to Our Journey Through MDS. At this point, the stem cell transplant was successful in treating and stopping the MDS. I survived! I am at present 100% donor in my bone marrow and peripheral blood. I am not a half empty or half full kind of person, I lean towards optimism but am also a realist. So I will continue to believe that the MDS is gone until the medical lab results say otherwise.

Update

Right now my medical team is reducing the steroids that kept the donor cells from attacking my body. So far so good, the GVHD is not flaring back up, but neither has it gone completely away. On the other hand some very good news is that my platelet count is responding! Over the past month they have gone from bouncing around the mid 40s to mid 50s to 100K, on my last lab results. They have not been that high in 5 years!

I know I still have GVHD in my gut, and limitedly in my skin (fingernails mostly) and in my eyes. In all three cases it is “mild” and if I use common sense and what I have learned over the past 6 months, I am optimistic that we will reduce the rest of the steroids and end them by the end of the year. I will still have GVHD for the rest of my life, all transplant survivors do. It is just a part of our life… so be it.

Ending the use of steroids is a very important step. I learned a couple of weeks ago they caused severe Osteoporosis in my spine. Its not mild like the GVHD. Right now I am going through physical therapy to build up my muscles, which is going to help me deal with this new health issue. During my last visit to see my transplant team they gave me a drug to halt (or slow) the damage and bone loss caused by the long-term use of steroids.

A Time of Transition

A week ago Terri and I saw a bone oncologist who specializes in osteoporosis in transplant survivors. She is very good and very thorough. There is a drug that might be able to regrow some of the bone in my spine and hips (and the rest of my bones). There are risks associated with this treatment and I will have to learn to become as knowledgeable about Osteoporosis as I had become with MDS and stem-cell transplants.

I won’t play the blame game and cry over spilled milk. Could my transplant team seen what the steroids were doing to my bones? Yes. Could they have stopped giving me steroids? No. Would giving me that drug earlier have help slow the development of the osteoporosis? Maybe. And getting the GVHD under control was their first priority. In situations like this you have to prioritize. The GVHD would have killed me if they did not get it under control. I knew that the two greatest risks following a stem-cell transplant was viral infections and GVHD. I got both… I survived both.

Now I am on a different journey. Just Flow is still just as important in dealing with the osteoporosis and GVHD as it was in surviving MDS and a bone marrow transplant. The GVHD and osteoporosis are chronic long-term health illnesses. Both will require me to adapt and move along the wave with a different set of rules. I am now considered “disabled” for life. How much will be up to me to a certain extent. And there are quite a few great role models for me to follow. People who have been told they will never walk again… or the Soul Surfer girl who lost her arm and is now surfing competitively. Will I be one of those people who climb Mt Everest or sky dive with the risk of breaking my spine. Hell no! But that was not me before all of this happened, and I certainly do not need to prove anything by doing that kind of extreme activity.

I do expect I will strive for walking 5 miles in an hour, or swim and scuba dive in the ocean, or live a “normal” life. Of course I will have to be careful, but who doesn’t have to adjust to just growing older. I think that is just being as realistic and optimistic as I have always lived my life. Yeah, I have to adjust that timeline again. Being optimistic I think I can recover in a year or two. And being realistic there will continue to being good days and bad days, which will eventually lead to more and more good days until I am healthy once again.

– Mark

I want to give an extra shout out to all of you who supported me while Mark was going through his transplant and in the hospital, while I was blogging solo. Your comments and emails helped me feel not quite so alone when I would go back to my little house at the end of the day. Although our regular blogging journey ends, the adventure of life continues. Keep us in your thoughts and prayers. Send us an email. Maybe occasionally throw some pixie dust our way.
Mahalo
~terri

So Terri and I both feel it is a celebration to be able to put the blog Just Flow – Our MDS Journey on a shelf and sprinkle the top with pixie dust to grow. If we have to pull it off the shelf again, with sadness we will let you know. But we want to thank all of you for your love and support through the most difficult time in our lives. We know your positive vibes, thoughts, prayers, knocking on wood and sprinkling of pixie dust helped us emotionally, physically and financially, and I believe strongly it kept me alive. With all of our heart we thank you.

To my donor, I literally love you and the gift you have given to me.  Your gift of life is inside me, coursing through my veins and has given me a second chance at life. Words will never be able to express my deepest gratitude, I hope a humble Thank you will do for now.

Love Mark and Terri

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.