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

9 Comments

  1. Ok, the title of the post scared me at first, but after reading it I understand. I will miss all the updates, but hope to keep in touch through email. So glad this is a celebration!

  2. Hurray for Life! Congratulations!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  3. Linda Senenfelder

    Glad to hear you are doing better. Will miss the posts

    Much Love
    Linda

  4. Wow. I pray that scuba diving and walking 5 miles an hour will be completely normal for you very soon! Cuidete my friend, XO Anne

    • Me too! To me those are goals for me to keep and exceed. But I will always take a prayer or two to help me along the way. Miss ya chica! Hope all is well in your life.

  5. Sunbeam Magic

    All things come to an end and your blog Just Flow is now one of those things. I want you to know I read every one )even if I did not comment everytime( and I believe you, Mark and Terri, are amazing brave souls having the courage to share such intimate knowledge with your fellow beings. My admiration and respect for you both is off the charts! My wish for you is continued life… full of LOVE! Shred those waves! HUGGGGGGGGGGGGGGGS and sending more pixie dust to sparkle your days!!!