Day +1003: …Welcome to the grand illusion…

“Come on in and see what’s happening…
Pay the price, get your tickets for the show…”

WARNING: This is a Michael Post.

The place is work and the question is: “Is Karen ok?”
Yes, she is fine – A checklist response.

So that is the illusion: Fine. Ok. Normal. Neutrally pleasing words that translate into a qualified statement people don’t want to face. Hell, most days I don’t want to face, and I’m just the bystander on the sideline of her life. So, for a multiple cancer patient with continuing symptoms of graft versus host disease, she is fine because she is alive! What is cured? No relapse in five years – no treatment side effect(s) that are as life threatening as the disease – heck, no pressure there for the day to day living. No worries or fears that the morning sniffle or cramp in the night is a sign that “it” may be back. Is this crippling? – no, Karen ‘deals’ with it, finds the joys and finds the hope to keep going. However, life is certainly not fair.

The stage is set. In the continuing evolution of Karen’s treatment; I’m often rudely awakened by how much is really a guess – yes, brilliant and well educated, well meaning – never the less still a guess – true; based on years of experience, but like all good human experience biased by a particular view or perspective. I see cancer as the most individualist disease; the body goes astray at the genetics level, and just because last 1,000 patients may have “responded” well to a treatment or drug – there are no guarantees. The person is sliced in functions of experience – blood, skin, eyes, organs (definitely differentiate there), bones, etc. – lots of specialized areas. But I don’t think quality of life is a deterministic equation of human subsystems. This is my obtuse statement that it is often hard to get the doctor to truly look at Karen as a whole person.

The price – in emotions? Priceless! (Note: sarcasm) In hard currency? Frighteningly debilitating – we are extremely lucky, that through current work and military retirement we are doubly insured. I’m not advocating “national health insurance” – what I’m trying to do here is raise a little awareness. The singular, limited but major event in Karen’s treatment – the BMT, cost more than $500K. Put your own insurance deductible against that and realized that it was a very short term event in years of continuous treatment. What do people do without insurance? No golden future there.

The show:

“…Hello darkness, my old friend,
I’ve come to talk with you again,
Because a vision softly creeping,
Left its seeds while I was sleeping,
And the vision that was planted in my brain
Still remains
Within the sound of silence….”

Yes – it is only a two song post. The information age provides the opportunity to share experiences both light and dark. Hopefully, Karen’s journey as reflected in this blog will help others in some little way with living their life. Technology is not inherently good or bad; however, the silence of a blog or website of a fellow traveler can bring on the greatest of fears. Sometimes that fear is realized, at other times it is a sign that someone is approaching “true” normal for awhile.

1, 000 days slip by….. Karen is “fine”. Thank you for asking.

Michael

8 Comments:

  1. the sound of silence simon and gar
    grand illusion styks
    what the hell did YOU smoke??
    and
    can I have some too??? xoxox

  2. pretty sure i spells wrong…..
    love you
    miss you
    mean it
    both of you
    but you knew that right?

  3. Nice to hear from you Dana – just another day at work. 😎

  4. Terrific post, Misch-love. Thank you!

  5. ..as in terrific race, the Romans, terrific race.

  6. Mike, thank you for such a frank post describing what is going on. It puts things into perspective. I love you both and continue to wish the best for you. I am so glad that you are close to such good providers and are able to receive some of the best care.

  7. I knew the second song without help! Sound of Silence by Simon and Garfunkle. I once analyzed the song for my 12th grade AP English class. I love that song. I’m glad that Karen is “fine”. I hope that someday she is truly fine, but I have a feeling GvHD is going to be a lifelong battle for her. Hope the kitties are doing well.

  8. Kitties are a pain = great

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