I was diagnosed with Myelodysplastic Syndrome Part 2

Posted: June 11, 2017 in The Battle Against MDS

 

On Tuesday June 6 my wife and I were sat down by the doctor and it was explained to us that my blast count was at 15% and that I was designated “high risk”. I would most certainly need a stem cell transplant and that chemo would need to start almost immediately. They scheduled it for June 12.

We had questions and she answered them all patiently. Then she left the room for a few minutes so we could gather our thoughts and put together more questions (a very nice touch). Then she returned and answered the new questions. We learned about the importance of having a perfect bone marrow match, and that the best likelihood of a perfect match was from a sibling, of which I have two. The likelihood is 25% each sister. After that, we look to the world bone marrow registry.

(Please register today – right here)

The ride home was intense. I was filled with anxiety and I could tell that my wife was too. She’s usually very strong and can be stoic, but she was genuinely rattled now. When we reached home she took the kids out of the room and I tearfully informed my mom and dad.

The anxiety was tremendous. Probably as much as it was on May 19th when I was first diagnosed. But I knew that the path to health relied on positivity and staying relaxed. I knew I had to get myself to that point as soon as possible. I knew it would happen, but all I could feel at that moment was despair.

I had to go public now. My readers of DobberHockey were getting a little restless. Where has Dobber been? Why is there no “Ultimate Fantasy Pack” in my store? My writers were getting restless too – “I can’t get this to work”; The emails for the little things in life, usually handled quite easily, were just building. On Wednesday June 7 I released:

And then I braced myself. I knew there would be lots of well-wishes, and some of it would make me emotional. A lot of friends and family had no idea it was coming, so that could get rough.

What I didn’t expect was the outpouring of love from many who were complete strangers: the hockey community. Look at the replies beneath my website statement and beneath the Facebook statement! Wow…

And here you can see all the replies on Twitter.

I loved them all, especially the ones that speak of their own experience with MDS and how a family member recent beat it. And not to pick a favorite, but this one made me laugh out loud while at the same time inspired me:

Capture

And this one from Twitter is the most inspiring:

 

As I already noted, the reaction of the hockey community was tremendous. Hundreds of tweets, replies, private messages all wishing me well. I was overwhelmed. And as nice as all of this was, it actually made for a pretty tough day. I’d just get my outlook onto the positive side of the ledger when I’d get a tough, emotional tweet or comment or email or even a phone call that would set me back again. But I understand that a lot of people were impacted by the news and that they truly care.

It was also touching when some well-known names chimed in with well wishes:

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This was a day that extended my anxiety a little, but it was worth it. Best to get this done in one day, rather than stretch it out over months. And it actually made Thursday easier. And by Friday I felt pretty positive and confident. I would beat this.

 

 

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