International MPN News, Science & Opinion

Harvey, farewell…

 

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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.

Mourning on the 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…

My father, myelofibrois and me.

Ashley Gould’s 2011 appearance with her father describing the 21andMe MPN initiative. And the YouTube video with Harvey

Karen the Driver

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

The Full-blooded Irishman

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.

Cockiness and MF along the Long and Winding Road

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.

Long and Winding Road – with blowouts.

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.

Breakfast with Harvey

One year ago, a candid look at Harvey in New Orleans goofing around over breakfast.

Long and Winding Road – Do not pass GO.

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

A Valentine from the Long and Winding Road

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.

 

 

 

 

 

 

 

 

Comments on: "Harvey, farewell…" (7)

  1. This week I received a LinkedIn notice regarding Harvey and was about to email him. I happened to look on this sight to see if there was an update before doing so and was shocked and deeply saddened to hear of his passing. His continued strength and willingness to fight was inspiring. His humor always made me smile. It was clear from the short time I’ve known him that his love for Karen and his family was endless. My sincere condolences. He will be missed.

  2. So very sorry to hear about Harvey, what a wonderful and inspirational person he was, he was a fighter who would not let his disease stop him – God must of needed him for a special purpose. My thoughts and prayers are with his family – he will be missed.

  3. Nat and Tineke Steinhart said:

    We are so sad to hear about Harvey’s passing. We never got to meet him, but through his book, and exchanging emails we feel we lost a dear friend. Our thoughts are with his wife, and family. Harvey, you were a great inspiration to me. Thanks for all your time and advice about my diagnosis last year. I hope I can be as brave as you were.
    Nat,Tineke and Jake

    .

  4. Beautifully done Zhen

  5. April Brook said:

    Harvey – who fought the good fight, was a giant of a man, with a brilliant sense of humor. It was an honor to have known him, albeit briefly. God bless, and deepest condolences to his amazing family. April Brook

  6. So sad to read that Harvey has left us. Sincere sympathy to Karen and all the family. RIP

  7. Barbara Vanhusen said:

    I only met Harvey once but feel through his writing that i have lost someone fine and dear. A fighter and a lovely man. God bless him and his wonderful family.

    Barbara

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