International MPN News, Science & Opinion

The Long and Winding Road

Crashing through a Barrier

–by Harvey Gould

Harvey Profile[1]

On November 25 of this year my wife and I were in my doctor’s office to learn the results of my recent bone marrow biopsy, but I was already pretty sure that I didn’t want to hear him confirm what I already strongly suspected. My “escape” was to project myself onto the long and winding road.

There, as I looked ahead, I thought I heard someone say that there was a big barrier right ahead. I saw it. Shit, I thought to myself. I’m gonna crash right through that friggin’ thing!   

I swerved to try to avoid it, but instead I crashed right through it and, out of control, plummeted into a still, dark, and foreboding forest. Thick fog surrounded me. Through it, faintly I thought I heard a voice repeatedly whispering, something that sounded like “camel” and “plant.”

Makes no sense, I thought to myself.

More of the fog dissipated and I heard the voice more clearly, but intuitively I knew that I don’t want to listen.

Go away. Leave me alone, I thought.

But it wouldn’t go away. Then, the fog lifted entirely and I saw Dr. Demon. He was saying,

“So, the final results of your bone marrow biopsy establish that your marrow is now quite active; your blast counts are now in the 20-30% range; and your myelofibrosis has now progressed into acute myeloid leukemia, or AML.”

Aha! So, I wasn’t hearing “camel”; I was hearing “AML.” I guess that’s the damn barrier through which I just crashed. But what the hell does a “plant” have to do with this.

I flashed back to the beginning. It’s March, 2000 when I collapsed in my office, was removed by paramedics, and was kept hospitalized overnight for observation for what was thought to be a “cardiac event”, a “TIA”, or, the most honest diagnosis, “We really don’t know what in the hell happened to you.”

Then, between March 2000 and July 2000, numerous tests were performed in the hunt to learn exactly what in the hell had happened to me since my blood work remained “off.”

On July 20, 2000, Dr. Damon (later dubbed “Dr. Demon” by my wife for all the bad news he imparted over the years) gave us the answer: I had primary chronic idiopathic myelofibrosis, and likely had no more than five years to live, a likely longevity subsequently modified to three to five years by the doctor from whom we secured a second opinion. (Thanks doc.)

Between July 2000 and November 2013 I encountered all manner of fun stuff, including diabetes, gall stones, surgery to remove my gall gladder, an esophageal ulcer, vertigo; hypertension, CAD, implantation of two stents; a pleural effusion nearly causing heart failure, hospitalization for pneumonia; increased cardiac risk from excessively low HDL, multiple transfusions and eventually transfusion dependency; hospitalizations for kidney stones; Vitamin D deficiency; insomnia, nocturnal leg cramps, edema, splenectomy, insanely elevated platelets, significant ocular hemorrhage causing partial permanent blindness in one eye, nocturnal leg cramps, hypothyroidism, subconjunctival hemorrhages, chronic kidney disease, nocturnal leg cramps, ruptured Achilles, five BMBs, 23,246 blood draws (OK, it only seems like that many), and all the while, hearing repeatedly, “Harvey, you look great!”

Then, just a few months ago my WBCs skyrocketed to 100,000.

In October 2013 I developed lymph nodes in my neck, armpit and groin. They proved to contain abnormal T cells and both myeloid and lymphoid elements.

In early November, 2013 my WBCs were still over 50,000 although my daily dose of Hydroxyurea (which I’d been taking for over two years) was increased.

In turn, that lead to the most recent BMB, which brought me back to Dr. Demon, who I then hear saying, “Harvey, you’ve been in the chronic phase of myelofibrosis all these years, but now you’ve raced past the ‘accelerated’ phase and you are now in acute myeloid leukemia, or AML.”

Slowly, Karen asks, “Does this mean we have to talk seriously about the elephant in the room?”

Dr. Demon says, “It does. As I just mentioned, Harvey needs a transplant.”

So that’s it! Just as I didn’t hear him saying “camel”, but “AML’, he also wasn’t saying  “plant,” but “transplant.”

I look at Karen. She’s shaking her head “no.”

I was 55 when I was first diagnosed. At the time, UCSF’s age limitation for a patient to undergo a bone marrow transplant (now more commonly called a stem cell transplant) was 55, so I was given a few months to decide whether I’d agree to proceed with one. After Karen and I reviewed the literature and asked our questions, we’d decided that it was too risky and that I wouldn’t do it.

Dr. Demon nevertheless urged that my one sibling be tested since a match from a full sibling is the best of all possible matches. We recognized that it would be foolhardy to fail to know that information before making a final decision. As it turned out, my sister was not a match and oddly, Karen and I were relieved. Had she been a match, we’d have agonized that much more over our decision. In 2000, doctors then spoke of a transplant as a “possible”, not a “probable” cure; and opined that “theoretically” the transplant should be curative for MF patients though that was not yet scientifically established. Oh, yes, and that the mortality statistics sucked. “Possible?” Hell, it was possible that I could sprout wings and fly.

So, thirteen years ago I chose not to have the transplant, and during those thirteen years (ha ha—not just three to five), I’ve lived and loved life all the while, never once regretting the decision in 2000 not to proceed. Of course there have been bad times along the way, but Karen and I have always preferred to see the proverbial glass as half full. During these years we’ve managed to spend time in Ireland; I had the time to write memoirs about our times there; I became a grandfather to six grandchildren; Karen and I managed to do some horseback riding together, a love for both of us; but most of all, I’ve had these years to continue to bask in Karen’s love, a gift from the heavens.

Additionally, I no longer have the luxury of being in the chronic stage of myelofibrosis. I now have AML and though we well understand that there are no guarantees of success with a transplant, and that outcomes can be deadly, we are encouraged by the increased scientific advances that have been made in the years since my diagnosis, including greater refinement of the transplant procedure. Added to that, we also know that, at this stage, without one, almost certainly I’ll be dead within a year. Simply put, there really is no rational alternative. If you are fortunate enough to be a candidate for a transplant, and you want a chance to live, (and I very much want to live,) it’s time to forge ahead.

In an effort to retard progression of the disease while we seek a donor, by the time this article is published I’ll have had my first five consecutive days of 5-azacytidine after which I’ll go “off” for three weeks, and then start over again—for as long as it helps—until a donor can be located. When the donor is found, then I’ll be hospitalized for at least a month for the chemo in advance of the transplant, the induction itself, and then for the journey that will follow, as I seek a way out of that damned dark and foreboding forest.

I plan to give reports along this journey. So, if you’re interested in coming along for the ride, buckle your seat belts and let’s do this together

Take me back to the Contents

© MPNforum.com, 2013 and Harvey Gould. Unauthorized use and/or duplication of this material without express and written permission is prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The Long and Winding Road" (9)

  1. I am so very sorry to hear about this new storm that you are going through but calm waters prevail at the end of the storm. You have gotten through so many trials as you will with this one. Thinking of you and keeping you in my prayers.

  2. You have so many friends here that we’ve chartered a big bus so we can all go on the ride with you. I’m bringing the wine. Stay strong – you can do this. Best wishes!

  3. Chris Harper said:

    Best wishes Harvey, from a current Myelofibrosis transplant survivor to a future one.

  4. Barbara Beckman said:

    Thank you for this story. You are amazing!

  5. Bonnie Evans said:

    Harvey……your reaction to those dreaded acronyms AML sounds like you hit a brick wall going 100 miles per hour. Treatment has come a long way since 2000. The odds of a SCT succeeding keeps getting better and better. Now our MPN Forum members who have relatives in good health, get them to register as a donor. It could be them that saves Harvey’s life. Go to http://www.deletebloodcancer.org and they will mail them a kit.

  6. ….and all the while I’m reading this and after being invited to share an amazing journey I’m lying here grousing about MY problems. Yep, Harvey, I’ll fasten my seat belt for the ride, but I’m not lowering my kneeling bench. Love ya, Man. Best, Arch

  7. Voncille Fryou said:

    Tears….will write you
    Big hugs my friend

  8. Mary Cotter said:

    Harvey may your road be long and continue to wind with only beautiful surprises around the bend.

  9. Thank you for sharing your story, Harvey, and inviting us to come along for the ride. May it be a good ride for you and your Karen, and family.

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