1929 / Class of '95 / Died 1998
[Written by Ray Jones]
Tonight, I write with mixed feelings -- feelings of sadness and anger.
Today, I attended the funeral of a very good friend. A man, aged 69, diagnosed with MM in late '95 or early '96 -- about the same time as myself. He was treated at Lahey Clinic, Boston. Slated, right off the bat for a BMSCT, he went on VAD, administered via a shunt. It was tough on him -- he was also a diabetic and had heart problems [angina]. Unfortunately, he elected NOT to educate himself, but placed himself in the hands of his doctors at Lahey. He also never got around to joining the IMF even though he was given all the information.
My friend went into "remission" and went to Florida for the winter of 96/97. While there, his beloved wife passed away suddenly from a cerebral hemorrhage. This was devastating to my friend. He came north last summer and moped around, then went back to Florida for this past winter [97/98]. A month ago he came back to get his Stem Cell transplant. Several of us tried to talk him out of it. He was neither in physical nor psychological condition to undergo the procedure.
Alas, he went ahead -- and died in the middle of the procedure!
I am very saddened at the lost of a good friend.
And try as I might, I can not erase my anger at the Doctors at Lahey Clinic for putting him into the situation.
Some things he told me that they had said to him:
At the time of his original diagnosis, "You have about 2 years to live". -- It took me 3 months to convince him that the statement was pure B. S.
A month ago, they told him he had one year to live without the transplant and maybe 3-4 years if he went ahead and had it done -- so he went ahead!
He was despondent over the loss of his wife, and spoke of "joining " her. I'm sure this had a major effect on his ability to persevere through the transplant.
I do not know if he had TBI as part of the transplant procedure, but I'd wager he did!
In any event, this is a lesson for MM patients and Care Givers. YOU MUST GET SMART AND LEARN ABOUT YOURSELF AND THE DISEASE. LEARN OF YOUR OPTIONS -- BEFORE YOU START TREATMENT! And don't depend entirely on the advice of one doctor or even a group of doctors at one location.
If only my friend had gone to Dana Farber and Dr Ken Anderson instead of Lahey!
My apologies for the length of this, but I had to get it off my chest.
May we all have better health.
Ray Jones [MM 1/96, age 68 -"too old for a transplant", 16 MP, 22 Aredia and counting; and feeling great!]
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