International MPN News, Science & Opinion

The Long and Winding Road (June 2012)

                Cockiness and MF

by Harvey Gould

 The beginning of my trip down the long and winding road of MF began when I was hauled out of my office by paramedics in March, 2000 during a severe case of vertigo and with a BP of over 230. I was kept at a hospital overnight for observation. Upon discharge the following day I was given a “working” diagnosis of a TIA. My internist said my blood work was remaining “abnormal”, so for months thereafter he performed numerous tests. All the results were negative. He referred me to a hematologist. He performed a battery of different tests. All the results were negative.Out of frustration because he was running out of options he performed a bone marrow biopsy. Before the procedure he told me (how many of us have heard this one?) “After I numb you up, you’ll feel some pressure.”

Well, he lied. During the procedure, to the extent I could think at all rather than focus on what was happening, I was thinking Pressure? How about an elephant sitting on my hip and then a sharp PAIN!

My wife, Karen was in the room. I kept looking at her and trying to think of the two of us on vacation somewhere delightful—anywhere but in that room. I saw tears in her eyes as she saw me wince, breathe deeply, and grab the table with both hands.

“I’m sorry I didn’t bring pain medicine. I didn’t expect problems,” said the doctor. “Can you take it if I go in again?”

“Do it,” I said.

He did—three more times, as we later learned, not only seeking fluid, but also seeking “core” samples. I saw the sadness on Karen’s face turn to a concerned frown. As it turns out, she started frowning when she saw the distressed look on the doctor’s face as he said somberly to the technician who was also in the room, “Let’s call it a dry tap.”

Obviously he’d learned something he didn’t like, but he ended up saying, “I’ll need a few days to review matters and get back to you.”

I was still working at the time. As it turned out, I was on my way home several days later when the doctor called and Karen spoke to him. When I got home she was on the computer researching “myeloproliferative disorders.” She said the doctor had told her I had a disease within that category of diseases; that they were rare; that treatment was far beyond his expertise; and that he was referring me to a team of experts who specialized in these disorders. (The words “neoplasms” or” cancers” weren’t yet used at that time to describe our “disorders.”)

We didn’t like what we read from Karen’s online research. Still I said to her, “OK, so we’ll go to this team of specialists; they’ll do their voodoo dance and make me better and we’ll go on with our lives as before. (Call me an optimist, or more appropriately, call me an idiot.)

When the head of the team of specialists told us I had chronic idiopathic myelofibrosis we already knew from Karen’s research that I was in serious trouble, but I had something akin to an out-of-body experience. I seemed to be floating above this examining room, observing this doctor telling life threatening news to this poor chap sitting there with a lovely woman sitting next to him, holding his hand.

How sad, I thought. I wish I could do something to comfort those poor peopleThen, I heard the doctor detail a litany of numerous possible and terrifying consequences, confirming that this was an insidious disease, and that it attacks the body in any number of a combination of ways that are unpredictable. He then told the poor fellow, “Look, you have a chronic and terminal disease that will shorten your life.” My hovering presence seemingly suddenly dropped into the body of that “poor chap” in time for me to hear the doctor say, “In all likelihood, you’ve got five years to live.” The “five years” seemed as though in an echo chamber, the words  reverberating in a looping cycle. (That death sentence was subsequently modified to three to five years based on the advice of doctors from whom we received a second opinion.)

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.

And so I became somewhat complacent, even a bit cocky. I was beating this “thing” that the doctor and all we’d read had warned was a beast.  As I came to learn, in a fight between MF and cockiness, MF will win every time.

On August 2, 2002, close to the two-year anniversary of my diagnosis, my hem/onc said, “You need an injection of what’s called Procrit to boost your hemoglobin to try to stay ahead of the game.”  The beast was on the move. And so, on that date a nurse gave me my first MF related injection, demonstrating how to inject into the arm, upper leg, buttock, or stomach. (Not being a contortionist I found it difficult to self-inject my buttock and eventually settled on my stomach as the primary target.) And so, between that date and mid October, 2002 I received ten injections of varying doses of Procrit.

Then, in mid October, 2002 the doctor switched me to Aransep, and from then into mid November, 2003–again at varying doses–I had twenty-seven injections of Aranesp, a substance, I found, that stings like a bee unless you inject it very slowly. Adding to these injections the routine periodic CBCs, and I’d become a virtual pin cushion. During this period I’d also been put on a generic of Halotesin and, for a spell, Predinose, all related to the MF. The beast was on the prowl. My night sweats had gone from bad to terrible. I’d begun to get leg cramps. When they struck, they forced me to get out of bed several times during the night to walk them out, in pain, for up to half an hour each time. Between the night sweats and the cramps, I was incapable of getting a decent night’s sleep. So, even with the injections, my energy level was low and my exhaustion was high. I now required routine naps; and I was beginning to feel some sense of bloating and general stomach discomfort. I’d had the cockiness knocked out of me. I now understood that this was a no-kidding-around disease and that though new symptoms might evolve slowly, inexorably, matters would only get worse.

In the meantime, Karen and I were doing our level best to maintain a semblance of normalcy in our “daily” lives, no longer planning vacations on a casual basis, but more with a sense of urgency, not knowing how long we’d be able to continue them. For years we’d spent significant amounts of time in Ireland, and we still took those trips, but now with a degree of poignancy, wondering if each visit would be the last. It was just before a scheduled trip to the Old Sod in late 2003 that I sustained a bad injury from a fall and it was with some trepidation that I returned to see the doctor, concerned that he’d prohibit us from going.

Life had definitely taken a bad turn and we now saw signs on the road: Major Construction Ahead: Drive with Caution.

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 (June 2012)" (3)

  1. Bonnie and Allison,

    Thanks, Bonnie, for your cheering. I try to stay positive, and thanks for your kind comments about “A Fierce Local”. Though, as you know, it’s about much more than living with an MPN, that part of my life is in the book and I hope it can be a small inspiration to some in our community.

    And Allison,

    Guess you’ll just have to continue to read the monthly columns. What story teller gives away the ending in the middle of the story? And, if you’ve not read past columns, feel free to dig back into the archives. I hope you stay tuned.

    Best to both of you,

  2. You are a survivor and an inspiration to all of us. Your book, a “Firerce Local” shows what one can do and achieve with an MPN. You do not stop living and cover yourself up with a blanket and live life to the fullest each and every day. Doctors can not predict ones life spand, they are not God, you could live for another 50 years, do not let anyone fill your head with negativity – as one thinks, the body follows.
    Keep that positive attitude-

    Bonnieq

  3. And???? Don’t leave me hanging.

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