Rich's diagnosis
is Primary Myelofibrosis.
Other things can cause myelofirbrosis but the doctor thinks it is primary. Cancers can cause it but he doesn't think that's it. Hence, the "primary" term. Myelofibrosis can be triggered by exposure to a toxin but since Rich never worked around chemicals that probably isn't the issue. It just is what it is.
Basically the abnormal myelofibrosis cells replace regular cells in the bone marrow. It is sort of like scar tissue.
http://www.mayoclinic.com/health/myelofibrosis/AN00474
Anyway, no treatment for now. No symptoms on Rich's part yet. He has low platelets and an enlarged spleen. That's it for now. Doc will see him in 6 months and probably every 6 months. Treatment options are limited... remove the spleen if it gets too big, chemotherapies perhaps, bone marrow transplant has been somewhat helpful - but those are all really long term things and not in the near future. Doc said he expects to be seeing Rich for many years to come and perhaps even decades. Lets hope so.
We are fine with this. It is what it is. No need worrying about it now. Just live each day to the fullest.
Kathy
Of course he is going to be around .. How else I am going to get around this damn city with out his awesome traffic updates ... !!!!
I am glad that they see the prognosis as it is ... and yes ... you live life to it's fullest ... handle all that have handles .. leave the rest to the heavens...
Love you both !
Natalie
Unfortunately, this is serious in the big scheme of things. The life expectancy after diagnosis averages 5 years but I think since Rich is asymptomatic at this point there is no need for treatment and nothing to do bu****ch it. The doc is giving Rich longer that that 5 years because no symptoms and because of his young age. Decades would be nice but it cannot truly be counted on.
Kathy
Hello Kathy (and Rich!!!)
There has to be SO much relief with just KNOWING!!!! I can handle most anything in life, much easier, if I just know what the hell I'm fighting or up against, ya know?
I'm glad the doctors was finally able to make an intelligent fact based medical diagnosis, and I'm really thrilled that a portion of his parting words came with ...."expects to see Rich for MANY DECADES to come"!! Heck, all any of us can truly hope for is another tomorrow, so DECADES sound very very positive to me.
He's very fortunate to have such an intelligent, caring, strong woman in YOU, but I know he already knows that.
Big hugs to both of you -- Lei
Hey, Lei!
Yes, knowing is better than not knowing.
I think the doctor's "decades" isn't really reality from what I read. Optimism perhaps. I would say decade singular is feasible. Average lifespan after diagnosis with no symptoms is 11 years. With symptoms oh 3-5. No symptoms yet. I hate those numbers. They just aren't enough. Oh, I'd love Rich to prove the statistics completely wrong and blow it out of the water. I really hope so.
I hate having to think about long term care, insurance, wills, etc. It is probably good to have to do that anyway at our ages but still... Having to do it not at my own choice of time sucks. It makes it all too real, ya know?
Just gotta get over this hump...
Love ya, K&R