International MPN News, Science & Opinion

Harvey farewell

 

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A little after 1 AM, ET,  September 14, 2014, Harvey Gould’s long and winding road disappeared into the mists.

Briefly, our world darkened as one of its brightest stars was no 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.

A Fierce Local

…Until then, May the road rise to meet you; may the wind always be at your back; and may God hold you in the hollow of his hand.

 rose single white

It was always the music
Lisa Bretones remembers her father’s music… The magical Mr. Light … and scenes from a life of love, song and laughter.

Bigger than life
Jennifer Golbus remembers her father, with love and donuts…

The Leader of the Band
Remembering my Dad, Harvey Gould, a tribute by Ashley Gould and a song sung at the memorial service, September 14, 2014, by his daughters at Congregation Sherith Israel, San Francisco. Dan Weinberg on guitar. Left to right: Jennifer Golbus, Ashley Gould, Lisa Bretones.

Comments on: "Harvey farewell" (7)

  1. Cantor Martin Feldman said:

    As a Cantor at Congregation Sherith Israel for many years, Harvey greatly enriched my life. I had the pleasure of preparing his three lovely daughters, Ashley, Jennifer and Lisa when they became B’not Mitzvah. I also had the honor of officiating at his marriage to Karen. Karen was the most beautiful bride and their love for each other became stronger and deeper with the passage of time.

    Harvey will be remembered for blessing by all who loved, honored and respected him. He was a wonderful role model to his children and to all of us. We were fortunate to have known him. We will all miss Harvey’s presence and pray that he will always be at peace eternally with God.

    Cantor Martin Feldman

  2. Marcia Rubenstein said:

    I have waited until today to look at all of this; I am Marcia, Harvey’s first wife and the mother of Lisa, Jennifer and Ashley. Harvey’s long journey has been filled with so many ups and downs. Karen, Lisa, Jennifer and Ashley have been there every step of the way. It still seems very unreal to me that he is no longer with us. My husband, Michael, and I will always hold Harvey in our hearts…may his memory be for a blessing

  3. He was a very special person who will never be forgotten. The song was beautiful, lovely voices. Really appreciate the pictures and the links.

  4. I am deeply saddened to learn of Harvey’s passing. He was a true champion for MPNs and a friend to so many of us! I will miss his spirit as well as his posts

  5. When I was first diagnosed with primary myelofibrosis I went directly to the internet. The first thing I saw was Harvey and Ashley’s 23 and Me video. I signed up immediately. Later I was so happy to “meet” him in an MF group. I enjoyed “talking” with him about Connemara ponies. I own two Connemara crosses and ride dressage. I read his book and enjoyed his stories. Unfortunately I never met him. I tried once when I was in No. California but it didn’t workout. All this to say that he touched my life as I’m sure he did so many others. I am better having known him. I look forward to going to Ireland. I will drink a Guiness for him. My prayers are with his family. Blessings to you all.

  6. Claire Wensing said:

    So sorry to hear this news. I had wondered how he was doing, but hadn’t heard anything in a while. My sympathies to his family and friends.

  7. Sheridan and Paul Emery and son, Paul said:

    Our family is very saddened at this news. We will keep your family in our prayers in the coming days. He sure gave his journey along the “long and winding road” an amazing effort.

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