A little after 1 AM, ET, September 14, 2013, Harvey Gould’s long and winding road disappeared into the mists.
Briefly, our world darkened as one of its brightest stars was no long longer with us. With astonishing humor and insight, Harvey brought us with him on the twists and turns of his journey. Along with the rigors of myelofibrosis and his ferocious struggle with acute myeloid leukemia and stem cell transplant he shared the great joys in his life, his wife and family, his love of Ireland and his Sonoma County home.
Losing Harvey as a companion on the way is a heavy loss. He was a strong supporter of our community, a regular columnist serving on both the MPNforum Board of Directors and editorial review board. He was both a reliable counselor and an unfailing source of joy. He was a friend.
For his tight knit loving family and for all of us, may his memory be for a blessing.
Here are some of the markers he left along his long and winding road.
Those of us who’ve lost a loved one understand that there are stages of loss and grief. At least until I was diagnosed with PMF I hadn’t understood that you can also mourn the loss of your health. Maybe I’m just a slow learner…
Ashley Gould’s 2011 appearance with her father describing the 21andMe MPN initiative. And the YouTube video with Harvey
I’ve often said that I am a man well blessed, and one of the critical reasons why that is true is because I am married to the love of my life, my soul mate, my best friend, and a person whose judgment I trust without question and one of the critical reasons why that is true is because I am married to the love of my life, my soul mate, my best friend, and a person whose judgment I trust without question
And yet we were fortunate—fortunate because I became a patient at the Cancer Day Ward at the Mid-Western Regional Hospital in Limerick which proved to be something of an oasis in a desert.
After we got into the regimen of visits to the hem/onc I noticed that though I had persistent exhaustion and night sweats, I wasn’t really feeling other symptoms. I began to think, Maybe all the hoopla is alarmist. Three to five years! Fiddlesticks. I’m eating well. OK, I’m more tired than normal and sometimes needs naps, but I can function. I’m not getting any significant treatments. My sister (and only sibling) is not a match, and I’m not interested presently in seeking a non-sibling donor for a possible SCT, so we’ll just go on like this forever.
After 13+ years of PMF, in November, 2013 my disease morphed into AML. Devastated by the news I felt as though I’d swerved off the road, broke through a barrier, and had ended in a deep, dark and foreboding forest from which seemingly there was no escape. Nevertheless, my hem-onc and I agreed that I should forge on and that I’d undergo a transplant. The bone marrow transplant team initiated a search for a donor.
One year ago, a candid look at Harvey in New Orleans goofing around over breakfast.
Like a slap in the face with a cold towel, in early November 2013 we learned that my MF had morphed into AML and my hem/onc at UCSF, Dr. Damon, (affectionately known within our family as Dr. Demon) laid out a plan of attack that required, among other things, quickly getting onto a chemo regimen on an out-patient basis, in an effort to retard progression of the disease, and better, to knock it back down, temporarily, to the chronic, phase—in preparation for an SCT
So, though I’ve generally come to terms with my disease, I still find myself with tears falling down my face when I think of not being there with my wife, my children, my grandkids. I don’t think so much of how the end will come, but mostly about simply not being there. And yet, at a time in life when most folks have long since decided not to deal with things like renovations to a house, and especially not at a stage of advanced MF, Karen and I are planning to make major renovations to ours. Why? Because we’re focused on life, not death.