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Graft vs. Host Disease: Day 99

Hey everyone, I hope you are enjoying your day, it’s an amazing day here in St. John’s, lots of snow from yesterday’s storm and a bright blue sky. A little chilly, but it’s winter. My bone marrow test scheduled for yesterday was cancelled so I went in this morning for one of the best marrow tests I’ve ever had. My Doc was very efficient and he was in and out in no time. Today’s test seems to be a formality more than anything, as my blood counts have been pretty solid ever since coming back in early November. However we are testing my marrow for most everything, which includes many tests I don’t understand, and I should have all the results back by Wednesday next week when I’m due back to the hospital.

I still have my Hickman, and I am also still wanting to have it out. The caution is that we don’t want to take it out too soon, as there is a long list of complications I could experience that would require it’s presence.

At present the plan is to ensure my marrow looks good, then I’ll have blood next Wednesday and from there we’ll look at pulling my Hickman. No other major changes on the medical side, I’m down to taking 10mg of Prednisone every other day, I also take folic acid daily and a drug called Septra, which helps prevent pneumonia.

Away from the medical stuff and back to some of my forward thinking. I wrote some of my Docs yesterday and had a conversation with another one today regarding my future. Specifically what I was interested to know was how long did/has the longest surviving (and thriving) 2 time Transplant Patient for AML lived past treatment? (AML = Acute Myeloid Leukemia, which is the type of Leukemia I have) I’m interested to find out what kind of life expectancy Patients in similar situations as mine have. I’ll explain my thoughts…

Right from the first week I was diagnosed with Leukemia, back in the week of November 9th, 1998, I was able to visualize my Victory Party. During my first Cancer Challenge I was very focused on the fight, on competing, on winning. Also know that while I was focused on the fight, I also had my own definition of “victory”. That definition hasn’t changed much, I’ve added to it a little but at my core Victory is still all about learning and then sharing my experience to make a Positive impact on others. What has changed is my view of the fight. This time out there is no fight and I have felt that way right from the beginning. Don’t take that to mean I’m less determined to live as that certainly isn’t the case, and that is where my conversations with my Docs come in.

First time out visualizing that Victory Party was easy and I learned that at the 2 year mark – 2 years Post-Transplant – my risk for relapsing would drop significantly and I would be more likely to reach the 5 year cure mark. So I set my goal as 2 years, my Victory Party was last year on April 13th, 2 years after my first Transplant. I reached my goal. This time out it’s different, because I’m making it different. I figure that it makes sense for me to focus on being the longest surviving (and thriving) 2 time Transplant Patient for AML. So I’m going to doing some searching and see what I can discover.

What I have discovered so far is that there are a ton of factors that influence success in curing a Patient, the scientific reasons alone are extensive. I learned this morning that often a Patient’s remission after first Transplant is longer than their remission after their second Transplant – using that base line I would have somewhere less than 27 months. I have also learned that most AML Patients, who relapse after their first Transplant, do so in the first 6 months after thus negating the option of having a second Transplant – using that train of thought we may be able to deduce that my Leukemia is not too aggressive and will be responsive to treatment. It seems that in my early stages of searching I have found information that will suggest I have a very limited time and that I am in a favourable position for a Patient in my situation. I feel that the more I search that trend will continue.

Going with that feeling I’ve decided to keep working through this thought, see what I find and make some decisions from there. Either way I’m fully committed to focusing being the longest living 2 time Transplant Patient for AML, but I would love to know just how long that is. When I know, you’ll know.

 

Always…
Live Life. Love Life.

Geoff

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