Saturday, February 20, 2010

MDS Becomes AML - Living Day to Day

Yesterday was a totally down day. No energy. No focus. Unable to do much other than try to sleep, and sleep wasn't happening either.

Which raised certain fears. Was this the beginning of falling blood counts? Did it have anything to do with a leukemia relapse?

Or, was it just the result of a poor night's sleep the night before?

The answer would appear to be the latter, since I'm up bright and early this morning and seem to be feeling fine. But, those nagging doubts may now be part of the lifestyle.

I came across a piece the other day by a writer named Judy King about living with leukemia Cancer Diagnosis: No Chirps, Please that begins:

The outer trip to the oncologist’s office takes about fifteen minutes from my house. The inner journey, which has been going on for twenty-four years, continues. One can be in remission from leukemia, but there’s no knowing for how long. It can return, seemingly from one day to the next, with no warning except perhaps for unusual fatigue and weird sweating. I’ve learned to live with the uncertainty of remission by telling myself, “For the moment, all is well.”

King goes on to muse about the difficulties of handling other people's reactions to having cancer, and importance of maintaining a sense of humor. She concludes with

If you meet someone traveling through life with cancer or any other catastrophic illness, and you don’t know what to say, try asking, “What’s it like for you?” You can’t know how they feel or what it’s like to be given a life-threatening diagnosis. Just be there for them as best you can. That’s more than good enough.

I'm all in tune with Ms. King's thoughts. But, I'm petrified of the idea of traveling through life this way for 20-plus years. Talk about the Sword of Damocles hanging over your head. Whoa!

I think I'll keep my focus on more mundane things, like the Great Hair Debate. Laina says just shave off the remaining few head-top strands. But, somehow I can't bring myself to go to the shaved head look, even if it would be temporary in the long run. Probably, however, the next few rounds of treatment—however many "consolidation treatments I must endure and certainly the bone marrow transplant—will take care of the situation by causing what's left to disappear anyway.

Somehow focusing lightly on the mundane, on silly nonsense that's really unimportant, makes things easier.

4 comments:

  1. Mitch, You've done it again-- found the words to express some of the agony of AML by placing us in the picture. To shave or not to shave the head? I don't know what I'd do. It'll be interesting to hear what you decide. In this instance you really do get to decide. Mundane rocks!

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  2. Hey Mitch,

    I haven't spoken to you in about a year after an extended interlude of about 40 years. The news about your health situation managed to trickle down here to Reston, VA. Gabe gave me some sketchy info and told me that there was something on the internet. He does not have a computer and does not surf the web but passed on what he had heard from Doc. He made mention of Doc kinda being like the glue that holds everyone together. I have not had contact with Doc at all but I understand. I am amazed that Gabe does not use a computer. It seems to me that with his curiosity and his insatiable thirst for information, the internet would be the perfect outlet for him. Anyway, a quick Google search led me to your blog.

    Needless to say, I am quite dismayed to learn about you current situation. However, your writings have been quite informative, being both alarming and quite entertaining at the same time. I do know that you are a writer. You are very good at it. I did stumble across your column in the Bergen Record when I was visiting my dad in Fair Lawn. I may have mentioned that to you the last time we spoke.

    I hope that you can continue your posts during your upcoming hospital stay. Anyway, I just want to let you know that I am thinking of you and wish you all the best.

    Mike

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  3. Mitch,
    Been thinking about you often and sending you good thoughts. My son is on the National Marrow transplant roster. I will look into it when I get home (been visiting daughter in CO). Anyway, stay strong in spirit...mind over body...wishing you well today and everyday. Vicki

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  4. Good to hear from you all. As I prepare to return to the hospital, all the supportive words are really helpful.

    Mike - yes, it is kind of amazing that Gabe doesn't immerse himself in the Internet, but he's a book reader and a roguish rebel, so maybe it makes sense. Glad to hear from, even if the circumstances stink. Stay in touch.
    Mitch

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