Monday, May 11, 2009

MDS: Coping, Keyword—Patience

Now, as the prednisone dosage diminishes to near-zero, and I bumble between Vidaza injection courses, I often forget I'm supposed to be sick. Especially mornings, I float through as if everything were normal.

Poking at the keyboard.
Sipping coffee.
Handling the odd phone call.

But, this illusion of wellness sometimes alarms me. Because it's regularly interrupted by sudden remembrance.

Oh, yeah, I can't do that yet (again? ever?). I'm sick.

Something's lurking in the shadows. A twinge of uncertainty emanating from my malfunctioning bone marrow. It pops irregularly into my consciousness and reminds me that things are not "normal." That things might never be "normal" again.

Which itself will be a new normalcy.

In an article in today's NY Times about John and Elizabeth Edwards' appearance on Oprah Winfrey, it said: Mrs. Edwards said her cancer played a role in helping her through a second wave of rage. "Being sick meant a number of things to me," she told Ms. Winfrey. "One is that my life is going to be less long..." [emphasis mine]

Less long than what?

What had she previously expected?
What had I previously expected?
How has that changed?

As Artie Johnson used to say on the old Laugh-In show: Interesting. Very interesting. But not funny.

2 comments:

  1. Dear Mitch,

    As the patient educator for the Aplastic Anemia & MDS International Foundation (www.aamds.org), I understand how important it is for people affected by aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemogloburnia (PNH) to get support from other patients and caregivers who know what they are going through.

    The AA&MDSIF provides free educational materials, publishes a free newsletter and eBulletins, funds research around the country, advocates for patients on Capitol Hill and with government agencies, offers a support network, offers financial assistance, and hosts an annual patient and family conference (July 10-12, 2009 in Indianapolis, IN) where patients can learn the latest in research advances and treatment options as well as connect with others. We welcome your questions, thoughts, and ideas: the Foundation is here to give you answers, support, and hope.

    Sincerely,

    Leigh Clark
    800-747-2820

    ReplyDelete
  2. Leigh--
    Your Web site was one of the first resources we found when this adventure started. And, I'm glad we did. When things have settled down a bit, I will be in touch.

    ReplyDelete