One Year Ago…

Posted: May 18, 2018 in The Battle Against MDS

A year ago, on May 19, I received a phone call at around 4:40 that would change my life. It was Friday of the long weekend and Dr. Crump from Princess Margaret called. He had been monitoring my blood for two years because early on they thought I had lymphoma, but when that was ruled out they just monitored until something changed. I remember Avery answered, and it had to be the first or second time she ever answered the phone. When she handed it to me and I heard Dr. Crump’s voice, that feeling of dread and fear welled up right away. Why would one of the most esteemed lymphoma specialists in the world call me personally? Let’s just say that I knew it wasn’t to wish me a happy long weekend.

I hurried into my office to get away from the kids and that was when he dropped the bombshell. They had diagnosed me with Myelodysplasia. My wife happened to text me from the GO train at the same time, wondering why she couldn’t get through when she was calling. I’m Googling this new term and texting her back while trying to keep it together for my conversation with Crump. Reading it on Wiki as fast as I can so I can get questions for Crump, who was giving me plenty of time to ask them, was a bit of a scramble. But I was told that it was serious and I was looking at immediate chemo treatment and almost certainly a stem cell transplant for my bone marrow.

There was a lot of panic and crying in private that night, I was only able to speak to my wife about it while trying to remain normal for my kids. Saturday found me still devastated. Was I going to live two years? What would I do with that time? The last few months would likely be horrible. Would treatment delay things for 10 years? Five? Would I see my daughters grow into adulthood? At this point…if I was offered a way to lock in 10 years of life in exchange for giving up the risk of one year or 20 years or just plain “not knowing”, I would have taken that deal in two seconds. Just to see Avery get through high school and Mackenzie get close and know that they were on the right life path was my only goal. That remained my thinking for the next couple of months. I started thinking about writing letters to my kids, to be given to them each birthday as they grew up after I was gone. I started running through plans to further organize my websites to transition to a full-time manager or a new owner, to make sure my family was taken care of. These are things you think about!

On Sunday I had regained full control of my emotions, though that really just meant I was a robot. We took the kids to Guardians of the Galaxy 2 and that actually got me to laugh and broke me out of my haze.

Two or three weeks later, I shared the news with my friends and my readers and was overwhelmed with support. I would often go back and read the powerful words people wrote over the next few months. A week after that, my wife and I sat down with the kids and explained what was happening.

The summer was a whirlwind. Within two months I found out that my sisters were half-matches but that the registry had found two full matches in the world bank. Also, my cancer had moved quickly into full-blown leukemia and I would need to be admitted to hospital right away. That’s where I spent the better part of two months. I got the stem cell transplant on August 30. Today, more than eight months later, I am completely healthy. All of my blood counts are great and other than a blip in November things have only been moving positively with nothing to suddenly alarm us. All I need to do now is avoid crowds and sick people, and stay out of the sun as best I can until one year (my first re-birthday on August 30). I have been very lucky and I know, personally, that others have not. I appreciate my time with my kids a whole lot more and I am trying hard to be a more positive person. It has been a year to remember, or maybe one to forget?

Needless to say – I would turn down that 10-years-of-life offer if it were given today!

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