I bought a book on Amazon this morning called "Love, Olivia: A Stem Cell Transplant Story" written by Olivia Chin. It's her story of stem cell transplant due to multiple myeloma (bone marrow cancer) and secondary amyloidosis (from the cancer which is quite common.) About 3 pages in, she talks about how she was initially diagnosed with Primary Amyloidosis, "this was equivalent to getting a death sentence" and that her subsequent diagnosis of multiple myeloma with secondary amyloidosis was "equivalent to getting parole."
I don't know if its accurate to think there's a better prognosis with multiple myeloma, but if its a death sentence I have to beat, so be it. I remember reading the book Papillon when I was in middle school. While his sentence was life in prison, he was committed to escaping or to die trying. He endured a lot of torturous treatment to gain his freedom.
Thanks, Olivia Chin but I don't need "the man" to grant my parole. I'll just make my escape.
2 comments:
I am so very sorry that you took offense to my book; it was never intended to invoke such a reaction. I am truly sorry.
Allow me to clear something up. My initial diagnosis was amyloidosis solely, and I was given 12-18 months to live. I was in Boston, and I was told to get my affairs in order. On the 6 hour trip home from Boston while a friend was driving, I typed my will, DNR, power of attorney, and more. I was scheduled for an expedited stem cell transplant in New York City (NYC) based on that diagnosis. About 3 weeks prior to the stem cell transplant, my hematologist in NYC asked to do another bone marrow biopsy based on his intuition - he had no medical reason to do so, since I had one done just a few months prior in my local area. The second biopsy indicated multiple myeloma - which at the time had a life expectancy of 3-5 years. (The first one was misread). If you have multiple myeloma and amyloidosis, the expectation goes with multiple myeloma. I was happy!
It has been over 6 1/2 years now, and I am grateful for being on the right side of the grass. Life is good. I got to see my oldest daughter go to college this year, and I have every reason to believe I will be around to see my youngest leave for college... and graduate ... and more.
Once again, I am so sorry to have offended you in any way. My apologies from the heart.
Olivia, Thank you for your gracious apology. No offense was taken, that post was written in the emotion of a moment of trying to come to terms with my diagnosis. I appreciate your willingness to share your story and hold no ill will toward you. I'm glad you're doing well and seeing your children grow up. My daughter who was a freshman in high school when I was diagnosed is now a senior so I can appreciate your joy in being around for your daughters. Here's to years of continued good health for both of us.
Kathy
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