My routine physical in August was anything but routine. "You have anemia - eat more red meat" my doctor told me. "Your platelets are low. Take iron tablets". 2 weeks later, no change. I get a call from my doctor telling me that he's referring me to a hematologist to try to figure out the problem. I have Kaiser and I'm happy there. Like it alot. Had my doctor for 15 years.
He never said the hematologist was also an oncologist. Imagine my shock to see that. What the hell is going on here? I feel fine, no problems. I'm walking 2-3 miles a day, no problems. But the reality is starting to sink in that there is a possiblility something is seriously wrong with me. No, I don't have time for this crap. We're going to Eastern Europe next year. I want to see Roumania where my father was born. I don't have time for this crap.
I see the hematologist. Young guy, educated in Denmark. Reminds me of Doogie Howser. I like him. No bullshit and to the point. Reviews all my medical history and tells me he thinks I have leukemia. Squarely between the eyes. C'mon Doc, I'm not ready to have leukemia now. Too much to do. "We're going to do a bone marrow biopsy and that'll tell us for sure and what kind of leukemia it is." My wife had gone to Burningman - I decided not to go this year. I call her (satellite phone) and tell her. I get the biopsy done, get a call from the Doc "You have CMML"
I still feel fine - no symptoms or anything.
My computer is now my best friend. Sores on my butt from hours at the computer finding out everything I can about CMML. NOT GOOD. Orphan disease affecting 1500-2000 people a year.
No effective treatment. Average life expectancy less than 2 years. I'm not ready for this crap.
Why me?? The emotion is unbelievable. Cry, cry, cry, knowing you have 2 years to live. Poor me, poor me, poor me. Tell my kids. More tears, mine and theirs. Go here, go there. Find someone who can treat this mother.
Ok, enough of this crap. Let's get a 2nd opinion. I'm lucky. Thru a connection, I get an appointment at Sloan Kettering in New York with the head of the hematology/oncology dept. Like getting an appt with GOD. My wife tells me "3000 miles away - they don't have good doctors at Stanford or UCSF??" But this is Sloan Kettering, the best cancer center in the country and I have an appt with G - - . We go and the diagnosis is confirmed. Return home.
My wife is in complete denial AS AM I. This is a problem and we just have to figure out what to do - like any other problem, right. We'll see.
Still feel good, no symptoms or anything. Can't be true.
Stay tuned
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4 comments:
Hell Matt. I found this blog through your wifes weight loss blog. Welcome to the blogosphere. You are a very brave person, not only for enduring the forthcoming passing of your life, but also for letting your readers share the most intimate part of your life: your passing.
I hope that you are looking after yourself as best you can, and I have no doubt that your wife is looking after you too.
With love,
John.
Hi Matt,
I've just bounced through from Arlene's blog too.
Welcome to blogland. I hope you find it gives you the outlet you need.
Warm regards,
Kim
John: Thanks for your comments. I hope I don't share my passing for at least another 10 years - and there is some hope.
Kim: I appreciate your comments. I know that once I get past all the backround stuff, I hope that I can help someone else with my story.
Love to both of you
Matt
Hang in there, Matt. I was diagnosed with CMML a year ago - oncologist was able to determine from medical records that I contracted it sometime prior to April 2006. It has been a year since diagnosis and almost 4 years since I contracted the disease and I'm still living a normal life - have to get a Procrit shot every week, but otherwise life is normal for now. I'll confess that I'll likely leave the planet in the next 18-24 months, but hang oin there --you never know.....
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