Feeling Despair

Posted: July 7, 2017 in The Battle Against MDS

Today, I feel despair. Hope took a beating. And finding the motivation to pick myself up off the mat is difficult to say the least.

Let me get you up to speed.

They found two perfect unrelated donor stem cell matches for me. On Tuesday I went in and spoke with the leukemia doctor and then had a bone marrow biopsy. I was told that, unless my blast count was below 10% on that biopsy (would require a miracle), I would need to check in the following Monday for heavier chemo and stay in hospital for four weeks. The stem cell transplant would be early September.

At this point it’s my thinking that the transplant, from what I read, had a 67% survival rate if it’s a perfect related match (i.e. from a sibling). And that because the data is three years old, and that I’m only 43 while most people with MDS are past 70, then I figured my odds were closer to 80%. So that’s my thinking.

On Wednesday I went to White Cedar cannabis clinic. There I spoke with a doctor at length, explaining that I was looking to increase my odds of survival so I wanted to try the Rick Simpson CBD oil. Maybe it will help push my blast counts lower. I’ll try anything even for an extra .0001% chance. So I got the prescription, the medicinal marijuana card and an order for CBD oil.

After that, my wife and I went to PMH to meet the transplant doctor. He was friendly, confident and hopeful. He was a little quiet, and his English wasn’t the best, but we could mostly understand him. One thing I did miss though, or misinterpret, was when he mentioned 45%. I thought it was my odds of dying within a year if I did nothing.

Today I was told that instead of checking in on Monday, I will check in on Thursday or possible Friday. So I had another three days to work on my Fantasy Guide before going into the hospital. After that conversation (it was on the phone, with the leukemia doc), I read the note online. That note was written by my transplant doctor (Dr. Thyagu) and I have access to my file online. The note says that he informed my wife and I that after the transplant, historically someone within my age group and with my numbers has a three-year survival rate of 45%.

That rocked me to the core. Those odds are shitty. Why on earth would they think I should do this with such shitty odds? It sucked the wind out of me. And I don’t know how to get the strength back.

Dr. Thyagu said that I have to take this in stages. Get through the first 10 days. Then get through 30. Then 60. With each stage I make it past, the survival rate increases. If I look at it that way, I can do this. The problem is – I can’t get myself to look at it that way.

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Comments
  1. lisakunk says:

    Dang! Stupid odds.

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