A note from Matt - The Diagnosis

August 31, 2015

 

As some of you know, I've been laid out sick in the hospital for about about a week now. This was not how I intended to start my 3 week vacation. This was a long, cold and wet Wellington winter and everyone in my office was sick for weeks at a time. There was no surprise that I got sick, just that it was off and on for about 7 weeks.  Anyway, things seemed to clear up in time for our trip, but the trans pacific flight wrecked me. By the time we took two more flights and got up to Coeur D'Alene, Northern Idaho, where Dani's folks live, I was a feverish mesh. Two days later and it was getting worse so Dani insisted I go to a hospital. My results came back poor.

 

My blood labs came back with a white blood cell count of 0.5 (4.5 is the low end of average) and an ANC number of 0.0.  It meant my immune system was effectively gone. They immediately moved me from ER to my own room and started me on a battery of tests. I was assigned an infectious disease specialist (HIV, hepatitis, mono, etc) and an oncologist (leukemia, lymphoma, etc) and they both set to work running my labs. 

 

On Wednesday I was diagnosed with Acute Myeloid Leukemia (AML) and further testing is being done to determine the cytogenetics of the disease. It's not a hereditary disease, but a random bit of bad luck for me. There was nothing I could do to prevent it.

 

On the upside, cancer is a curable disease. I have already started Chemotheraphy. It's a pretty standard regimen with a slight exception for aggressiveness due to the cancer type and my age and otherwise health. I'm taking 7 days of continuous IV drip of Cytarabine and 3 days of injections of daunarubicin, and blood transfusions as necessary. After chemo, I will have a 7-10 day recovery/hair loss period and then the doctors will do another bone marrow biopsy. This milestone will determine my next move (change to a major hospital and continue treatments, change to a major hospital and change treatments, lots of unknowns). I will cross that bridge when I come to it. 

 

My brutal "tumor fevers" are already down, no nausea, and no pain. They have plenty of drugs to keep me comfortable as the symptoms get worse over the next week or so, but so far I'm on motrin and a bunch of preventative anti-biotics and anti-virals. 

 

Dani has been amazing through all of this. During the early days in the hospital, my fevers were very unmanageable and were spiking up above 103 and holding there for hours. She was monitoring and managing nurses, and keeping the whole show running smooth. We've cried a lot together and talked about how it's going to make our relationship stronger, and how it won't change any of our long term goals. Leukemia is going to have to live with us, and not the other way around.  She is the best support partner I could ever have imagined.

 

Our families have both been actively involved. They have been running errands and providing emotional support for both myself and Dani.  My doctor buddies James Learned and Alex Korutz, and self-professed Google wizard Chuck McKiel, have been researching and working tirelessly behind the scenes to make sure we're getting the best advice and care and helping with some of the admin stuff that is so overwhelming at this stage, and making sure that our forward care is being anticipated.  It has all been so helpful as this is a complex process where you have to make decisions without knowing the facts and without any time to research.  Having insiders provide guidance and having people willing to put in the time and legwork for us on the admin stuff is worth its weight in gold.

 

Lastly, I want to say that I'm 100% confident that I will beat this.  AML is not a death sentence for most people and it won't be for me.  I'm young and strong, I have an amazing wife sleeping by my side and caring for me day and night, and I have a huge support network looking out for me. Thank you all for being a part of that support network.

 

- Matt

 

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