Tuesday, March 2, 2010

MDS Becomes AML - Blood Counts Drop, Mood Drops

As expected, the counts continue to descend.
  • Platelets: 12,000
  • Hemoglobin: 7.9
  • White Cells: 11.8
Although Dr. O promises that today is "bottom out" day, it's difficult not to wonder, the doubt exacerbated by the fatigue factor.

I was sound asleep by 8:30 last night, awakened by the nurse at 9:45 to be fed meds and be disconnected from Ms. I.V. Pole and, apart from the usual multiple, fluids-fed, pee-trips to the bathroom, I slept straight through almost to 7. This morning my butt is dragging.

It's gotta be all about the counts.

But, as the counts and energy drop, so too does the mental set. By day's end yesterday, discouragement predominated. All the nasty, niggly little discomforts were poking at me like rambunctious older kids piling on to jab and tickle a little guy.

Avoiding negative contemplation becomes harder. My physical world has been reduced to this room, and the occasional stroll down the hall. Ironically, my hour-to-hour care needs are few, giving me whole clumps of time to sit alone, the primary human contact being whatever complaints, crises or staff gatherings I hear drifting in from outside my door.

One's world shrinks. And with it, one's focus.

There's a book review in the NY Times this morning of Lionel Shriver’s new book, “So Much for That”, a novel centered on families with health issues, cancer in one character's case. The reviewer writes that Shriver...

manages to convey Glynis’s fear and bewilderment and isolation. What it’s like, especially as her illness progresses, and the chemo takes more and more of a toll on her body, to have to stop thinking about the future and simply focus on getting through that afternoon or evening. What it’s like to see others jogging or working out when it’s a struggle for her simply to walk up the stairs to her bedroom. Disasters reported in the morning newspaper, relatives’ difficulties and complaints, the weather outside that day are all equal to Glynis:

“There were no big things and little things anymore,” Ms. Shriver writes. “Aside from pain, which had assumed an elevated position of awesome sanctity, all matters were of the same importance.” 


No—I haven't reached this point. Yes—I remain terribly (absurdly?) optimistic. But—sometimes the demons gather round the door and try to sneak in, as happened when an in-depth discussion about hospice care for one of my neighbor patients broke out just outside my room.

How not to think, "Is that where I'm going?" One must make a concerted effort to shunt out the notion.

I still can. And do. Which is why the trip to Idaho takes on such importance. Because it symbolizes still being able to function, an opportunity to actually get out of this room (or, by extension for post-hospital release, out of the house) and interact in the world at large.

That is large.

4 comments:

  1. The word "rollcoaster" does not begin to describe the ride you've been on. Here's hoping the counts soon move in the direction they are supposed to and that your mood skyrockets.

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  2. C--
    Thanks for staying in touch. Am getting blood this afternoon, and it's helping with mood and numbers. Perhaps I should carry my own spare blood supply with me at all times.
    m

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  3. Those numbers really can mess with your head..and energy level....The future is bright ...a little transfusion, and you will be homeward bound...and traveling soon! Hang tough!

    Dave and Patti

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  4. Mitch - have not really been sure about posting a comment as I don't want to come across with something crass or inane.
    Lets hope that the only reason you will need to cancel that skiing trip is because a donor is located.
    Best wishes

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