International MPN News, Science & Opinion

The long and winding road … (July, 2012)

by Harvey Gould

The Weight of Mortality

My MF journey started in early 2000. I was hospitalized overnight for severe vertigo. The doctors monitored me for a “cardiac event”. Though they confirmed that I had a heart (not always easy for a doctor to admit about a lawyer), they also confirmed that I’d not had an “event”.

“So, in other words, you’re saying I didn’t have a heart attack, is that right,” I asked?

“Well, er, actually, yes, I guess you could say that.”

Upon discharge, I was also told that the working diagnosis was a TIA.

I said, “So, could we just say I had a mini-stroke?”

“Well, er, actually, yes, I guess you could say that.”

Months later, after numerous tests in an effort to discover why my blood work remained “off”, I was advised, “You have chronic idiopathic myelofibrosis”.

“Ah, ‘idiopathic’”, I said.  “Isn’t that just doctor-speak for ‘We don’t know what in the hell causes this?’”

“Well, er, actually, yes, I guess you could say that.”

I considered changing the diagnosis to chronic idiotic myelofibrosis.

As the years passed, as with all of us being followed for serious medical challenges, I’d come to hear more euphemisms for life-threatening diagnoses and medical conditions. Why not? We all do it in one way or another. I remember in the early stages of the US rocket program sometimes a rocket would blow up on the launch pad. On other occasions, one would get off to a wobbly start, veer off toward some nearby community, and be blown up before it wiped out an entire neighborhood. These weren’t failures, we were told. They were unscheduled disassemblies.  Gotta’ love it.

After my “idiopathic” diagnosis and getting used to the routine of visits to the clinic I became cocky for a few years because not much seemed to be happening to me. I was convinced that this MF thing was no big deal and that the doctors were just making a lot of hoopla over nothing. Then, my hemoglobin started falling. I started routinely receiving shots of Procrit and then Aranesp. Even with the shots my level of exhaustion increased—to the point that I was forced to retire from the practice of law years earlier than anticipated. I couldn’t make it through a day without napping. I had severe night sweats. I could no longer tolerate wearing a pajama top with a neck. Instead, I wore tee shirts and would typically sweat through five or six nightly.

My stomach started hurting as my spleen grew. I learned that this was a common symptom for many with MF. I learned why it grows. I learned about the possible consequences. My doctor started following its size. By the end of 2003 he started talking about a possible splenectomy if he couldn’t control its growth. (I was able to prevent one until 2011.) My only sibling was tested for a possible bone marrow transplant. She wasn’t a match. I wasn’t willing at the time to do a non-sibling donor transplant.

I began to accept that this disease was a beast that didn’t necessarily roar and pounce quickly. Rather, quietly, but inexorably it worked its damage in a slow but insidious manner in ways that followed no set pattern, but instead were unpredictable—and that there was no cure for it.

I began to feel the weight of mortality at the same time that I was told repeatedly by friends and family, “You look great.” Over the years my wife and I got used to hearing how wonderful I looked, in later years often after I’d just gone through a particularly rough patch: transfusions, weight loss because of loss of appetite from the spleen pressing on my stomach, a pleural effusion from one of the medications, hospitalization for pneumonia, and so on.  “God, you look terrific, Harv. It’s so good to see.”

What do you say? “You’re an idiot?” “Do you have thirty minutes and I’ll tell you the crap I’ve been suffering?”  No. You say, “Thanks,” but then they’d test my limits by asking, “So, I guess you must be feeling great, right?”

“Well,” I’d say, “Let’s just say that things could be a lot worse.”

I’d started receiving Procrit and then Aranesp injections in late 2003, and continuing fairly regularly. They continued through 2005 and into early 2006 because my Hemoglobin wouldn’t hold at a decent level without them. During that time, though, I started a roller coaster ride with my insurance carrier. As the drug would work and my numbers would elevate, the company would refuse additional injections because my numbers didn’t meet their protocols. Unless you had a bank account roughly the size of Bill Gates’s, these injections are not affordable on a routine basis. The doctor would explain to the insurance company that the very reason my numbers had elevated wasbecause of the injections and that the only way to keep them elevated was with additional injections. Inevitably, the response was, “Sorry, he doesn’t meet the criteria.” Without the injections my numbers would drop. The doctor would then reapply for authorization and receive it—because I then met “the criteria”. And so it went as we remained in what seemed like an evil pas de deux with the company—one that made me want to hit my head against the wall just so that it would feel better when I stopped.

Meanwhile, as with all MPN patients, I was leading a double life—one closely tied to the MPN world and the other outside the realm of the clinic. For my wife, Karen and me, this included not only our wonderful marriage, but starting in 1988, traveling to and spending extended time in Ireland. HINT: though I’m Jewish and growing up, knew as much about Ireland as I did about astrophysics (trust me, I’m not an astrophysicist), she’s Irish Catholic, born and raised in Manhattan, with her paternal grandparents having emigrated from Ireland in the early 20th century.

The year I was diagnosed (2000), Karen and I were scheduled shortly thereafter to go on one of those extended stays to the Old Sod. The doctor agreed that going on that trip would be the best medicine then available. He was right, and even in the years when the Procrit and Aranesp injections started, we still went—the drugs triple packed in ice to keep the medication chilled. (Especially after 9/11 the airlines wouldn’t allow us to put anything in their refrigerators.)

So, after the initial shock of the diagnosis (and the, “You’ve got three to five years” prognosis), Karen and I agreed that as long as I remained relatively physically fit, we would continue with our lives in as normal a manner as possible. That included returning to Ireland, and continuing to pursue one of our mutual passions, horseback riding. So, even after my diagnosis, and through 2007, we returned to Ireland on eight separate occasions (twice in 2004; once for pleasure, and a second time when I rode in my first foxhunt, quite a story in and of itself).

The night before we left for Ireland in 2006, however, I was up a good part of the night, throwing up. We wrote it off to too much sushi at dinner and flew to Ireland the next day. But the tiredness I felt shortly after arrival was of a different degree than anything I’d experienced. I could barely walk without my heart racing and without panting for breath. I could feel my heart thumping while lying in bed. My chest hurt from the pounding. Friends gave us the name of a local doctor. After we visited her and I had a CBC with shockingly bad results, I began a journey I’d never imagined. I wasn’t about to face some crazy poorly marked turns in the highway. I was about to crash through a barrier and go over a cliff.

Take me back to the Contents

© Harvey Gould and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Harvey Gould and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The long and winding road … (July, 2012)" (13)

  1. As always, you are a true inspiration Harvey…

  2. Davnet, ‘Tis the truth. First, Karen’s father told me he was descended from Brian Boru, and after my wife and I spent fourteen trips to the Old Sod over twenty years I now say “grand” instead of “great”. Karen’s first horse is Declan, a Connemara pony who she still rides and who we bought from Willy Leahy who, of course, named the pony after one of his sons.We’ve stayed at Cashel House and been in Clifden and Roundstone. I’d be delighted if you’d get my book, “A Fierce Local, Memoirs of My Love Affair with Ireland”. On your side of the Pond available on Easons, or any major online retailer. Slainte, Harvey

  3. Davnet Heery said:

    Looks like the blather here in Ireland is infectious! Could be you caught it from your wife!
    Davnet from Connemara (MF)

  4. Barbara, My vertigo has continued, but not so bad as to require ER or hospitalization. I did recently have a neurological work up with MRI/MRA scans and thankfully no blockages were found so I just live with benign positional vertigo. It wil “come on” if I raise my head too high or too low and sometimes, seemingly for no reason, but at least it doesn’t last too long. Not fun, but in the scheme of things, I’ll take it. (Though I wasn’t given a vote.)

    Thanks for looking forward to my next installment. It will cover a pretty rugged period.

  5. Barbara Kurtz said:

    Your journey with MF has indeed been a winding road. But the vertigo is a familiar symptom to me. I wound up in the ER at least 4 times with serious room spinning vertigo in the 1980’s. And I’d been diagnosed with ET since the early 1970’s. No one put the symptoms together (platelets well over a million) until I had a million dollar work up in 1987. Luckily I had good health insurance. A neurologist started me on my journey with HU by finally referring me to a hem.
    Looking forward to your next installment.

  6. Thanks, Ann. I’m pleased that at least I can turn some of the terrible experiences those of us living in MPN Land know so well into a worthwhile story. Stay tuned.

  7. Wonderful story teller. Can’t wait for the continuation of this story to be shared here in MPN land.

  8. Harvey, I have to get your book – you really know how to tell a story! I’m really enjoying this chapter approach to your MPN story.

    • mciris, Thanks for the compliment. My book does include some of the story of the onset of MF and how my wife and I cope with it, but that is but a part of the recorded memoirs of extended times over a twenty year period that my wife and I spent in Ireland. I also write a blog at harveygould.authorsxpress.com where you can read more posts, but from which you’ll also find links to major online retailers if you’d like to buy the book.

  9. Thanks Arch and Patti.

    Arch, here’s hoping we can keep you away from the courtroom, and though I’m not sure I’d still be ready, I’d be more than willing and able to represent the good doctor. Orangeman, huh? OK, I’ll keep it from Karen and you and I can still remain buddies. As for the two verities you identified, though we know the first is true, we KNOW the second is true.

    Patti, Sorry you are able to identify with some of the issues noted in my column, but delighted you’ll be joining me on the next installment. I promise to make it worthwhile.

  10. Patti Cooper said:

    Thank you so much for taking the time to share your story with us. I could identify with so much of what you have been through, from not-so-clear medical opinions to battles with insurance companies—as if there was not enough to deal with already! I can’t believe you left us with a cliffhanger, but it served it’s purpose as I anxiously await your next installment! Thanks again for sharing.

  11. Thanks for sharing your journey with us, Harv. What a great story teller you are. I’d sure want you on my side in a courtroom. It’s good to know that by buying your book (name on request. hint, even this Orangeman can enjoy a fierce Emerald tale). Actually anyone will relate to and enjoy a longer read that’s even more vivid than your column. Two verities in your column caught my eye. First, We are all potentially medically indigent (well maybe not Bill Gates if his illness isn’t too rare and extended). It just depends on what disease the rest of us have and how long we’ve had it. Second, The best thing you and I ever did for our selves was to marry above ourselves. Best, Arch

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