International MPN News, Science & Opinion

The Long and Winding Road (10/12)

Harvey’s first…

by Harvey Gould

The night before we left for Ireland, I got sick and was up most of the night. Karen and I both wrote it off to too much sushi at dinner.

The next day we traveled to Eire, a comparatively uneventful trip.

Because of my MF I’m always tired, but I learned long ago to push through the exhaustion, giving in only when I can’t fight it anymore. But the tiredness I was feeling in Ireland was of a different order. Not only was I constantly exhausted, but I also found it difficult to walk without having to stop every few feet, heart racing and out of breath. This was new. As I lay in bed I could literally hear my heart thumping in the quietness of the night. I remember thinking that if I explained the sensation well enough to Edgar Allan Poe he could write a story about it. Slow deep breathing didn’t help. Taking an extra pill to relax myself didn’t work. My chest hurt from the pounding. I tend to be fairly stoic, so these developments were disturbing.

Irish friends invited us to dinner. Our hostess took Karen aside and told her how horribly pale I looked and how unusually quiet I was. She gave Karen the name of a doctor.

When we visited the doctor I gave her a brief history of my disease and told her what I’d been experiencing since the night before leaving for Ireland. She drew some blood. Although understandably she didn’t know much about myelofibrosis, she knew that of the many effects of the disease, one is abnormally low hemoglobin. She had us drive my blood to a lab at the Mid-Western Regional Hospital in Limerick. Three hours later, the doctor called Karen and said, “Get your husband to the casualty now. His hemoglobin is at six-point-one. He needs a blood transfusion—fast.”

Much later, after figuring I’d been in that dangerous level apparently for many days my doctor in the States said he was amazed I hadn’t had a heart attack or stroke because my heart had to work that much harder to make up for the dramatically decreased oxygen supply to the muscles and organs. Ah ha! So that heart thumping wasn’t just my imagination about a possible new Edgar Allan Poe short story.

One of the things my US hem/onc had told us in our first meeting was that I’d never crash. We well remembered him saying that while my disease was chronic and terminal, “At least it tends to move slowly so you’ll never fall off a cliff.”

That’s not the kind of news you forget and even a week before we left for Ireland that year, my blood counts were what, for me, were abnormally normal. Unfortunately, my doctor was wrong about me not crashing.

Not long after I was diagnosed, Karen found a cartoon. It depicts two people walking out of a cancer ward. One says to the other, “Do you want the bad news or the good bad news?” For anyone with a chronic or terminal disease, that pretty much sums it up, but it seemed that during that summer in Ireland in 2006, I had only bad news.

After an interminable wait at emergency we learned that I couldn’t be admitted to the hospital that night because they were under-staffed, and that even if I remained on a hallway gurney where I was then stashed, I couldn’t get a transfusion until the following morning. Before leaving, they did draw some more blood for another CBC.

When we arrived at the Cancer Day Ward the next morning, a young woman sat with us, clipboard in hand. I figured this was where the bureaucratic hassle would begin about insurance, but her questions were routine. She never did ask about insurance; it wasn’t until we’d returned the third time that anyone even took a credit card number (which was not processed until my insurance company finally paid me the amount of the bill a year later and I then notified the Irish hospital to charge my card because I had the cash to pay its billing).

One of the questions she did ask was, “What’s your religious preference?” I hesitated before answering. I didn’t mind the question. It’s that it struck home that some of the patients at the ward would need last rites, or the Protestant equivalent, and they wanted to know, when the need arose, whether to summon a priest or a minister.

I flashed back to a scene more than fifty years earlier. My family was vacationing at a rented summer house outside Chicago. We were heading out to a movie and I skipped to the car, hopped in the backseat, and slammed the door leaving some fingers inside the doorjamb. I immediately passed out. My mother saw me, gasped, opened the door, grabbed me, and ran back to the house carrying my limp body—my head back and my arms dangling, spread eagle.

A priest playing a round of golf nearby saw what was happening, ran up to my mother, and asked, “Madam, do you need last rites?”

“Hell no!” my mother screamed. “What I need is a doctor!”

I shook off the memory and answered, “Jewish.”

In one motion, the young woman’s head snapped up from the clipboard, her mouth opened, her eyebrows raised, and she said, “This is exciting! You’re my first.”

I almost said, “You don’t look like a virgin.” Instead, I replied, “Glad to be of service.”

A hematologist was assigned as my primary care doctor. In turn, she’d conferred with my hem/onc from the States.  On our first visit to the Cancer Day Ward she told us from my blood that had been drawn the night before, my hemoglobin was 5.6. Since it had been 6.1 earlier the same day, this was a frightening and stunning drop. The doctor said something else, but my brain put her volume on low and all I heard in my head like a reverberating echo was, You’ll never fall off a cliff. You’ll never fall off a cliff. You’ll never fall off a cliff.

Hell, I was in freefall, a virtual nosedive. I received two units of blood that day, my first blood transfusions ever. As it turned out, I needed twelve units, which I received on seven separate days during the course of three weeks.

But would they be able to get me to a point that I could make it back to the States? What experiences would I have during my multiple visits to the Cancer Day Ward? What might this episode impel to do if I survived? Eventually, these questions and more would be answered.

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,  

Comments on: "The Long and Winding Road (10/12)" (3)

  1. Cathy Duffy said:

    You continue to be an inspiration Harvey, allowing us to smile in spite of your challenge.
    Keep fighting, keep writing and for heaven sake, keep that incredible spirit and sense of humor. I have shared your book with many…. It has been truly enjoyed by all.

  2. Harvey – I really look forward to reading your story with each publication. Chuckled over the last rites/Jewish part of the story. Recalled the compassion of the staff at John Radcliffe in Oxford when my husband had his heart attack. Like you, no one hassled us for payment and worked with our insurance company in the States to get reimbursed. My husband received excellent cardiac care in the UK. looking forward to next month’s installment of your story.

  3. Hated to stop reading. I will just have to pick up your book “A Fierce Local”, and be taken away from everyday life again. As you know, I love your book, it is a great read.

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