'Not From Here,' stories by Nathan Deuel

Embedded at the Mayo Clinic

Mayo Clinic

The badge of honor. (Image via Wikipedia)

Your correspondent is no longer based in the Middle East. I am instead reporting from the ICU floor at the Mayo Clinic in Jacksonville, Florida, where my dad is battling cancer.

This is my sixth day here and it’s been a constant state of siege. Basically, we’re battling to keep my dad stable enough in order to undergo the daily radiation that could prolong his life. Every hour, it seems, we confront a new and significant hurdle to that plan.

In our tiny room, my mom, sister, and I take shifts staying up all night, holding his hand, skipping meals, trying to cater to his every need. He can’t talk anymore, so we talk for him, charming the nurses into giving him his pain meds on time and to treat him like man, not meat. We listen carefully and take notes and ask tough questions, and when a doctor appears to discuss some new terror, we remain calm.

But it is impossible not to become emotional: A doctor reports that a scan of his brain is negative, and we soar. A surgeon tells us that replacing his trachea tube — an urgent operation — might kill him, and we slip into sobbing horror.

The highs are very high and the lows are very low.

Yet we feel like we’re doing everything we can. (We pray we’re doing everything we can.) And having been here a few days, I am convinced that Mayo is doing everything it can. It is important to believe in the army of doctors and nurses working together. Lose faith in them and you replace hope with hatred and anger.

But no matter how good the doctors are, medicine as a whole does not care how cruel it is, and medicine does not listen when we complain. Despite all our best efforts to understand, to anticipate the cancer’s next move, medicine always changes course and it does not always make sense. Resoundingly, it is not fair. And of acute pain to me, medicine resists my natural inclination to see a narrative.

I know how I want this story to end, of course. But, agonizingly, it doesn’t matter how much I yearn, how hard any of us work. (Except, presumably, the doctors.) For the first time in my life, I am in over my head and I can not bullshit my way out of this.

I think about my own role in this drama and I realize: It doesn’t matter how good and right it feels when things are going well and how wrong and awful it feels when things are not going well. Things go wrong, and there’s this leaden, brutal buzz and I take a poison breath and feel the narrative slipping, I feel the plot unraveling, I feel defeat. In those dark moments, I go numb and the power is out and I feel helpless and I feel lost and I think we are finished.

But we are not finished. This is life. This is real. I may not be in control. But it is still our story. And with my family’s permission, I have begun writing. We will win. Stay tuned.

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Filed under: Cancer, Death, Health, Medicine, , , ,

5 Responses

  1. Caitlin Kelly says:

    “Winning” may not look the way you — and we, of course for you — want it to.

    I am so sorry to hear this, Nathan, and it is terrifying. Your Dad is very lucky to have you all there and to have your love and your ferocious, necessary advocacy on his behalf. Try to bear in mind that doctors are also bombarding you with a lot of complex information and it needs fast decisions; take notes (to keep it all straight), and get the patient advocate and/or hospitalist on side as well.

    Praying for you and him.

  2. Flan says:

    I understand what you are going through. Two years ago this month, my twin brother Paul was in the end-stage of his lung cancer.

    Try to keep the good memories of your times with your Dad upfront as it will help you through these trying times. Be thankful that you are there for him as many people do not have family and friends around them.

    I resented people who told me these things two years ago, but now that time has passed, I can say that it did help.

  3. leticia says:

    Nathan.

    This may not be the most appropriate way to respond, but it is the quickest. Thank you for this.

    I have always admired and been in awe of your family’s openess and love.

    Sending good energy and much love your way. Kisses to all.

  4. Nathan Deuel says:

    My dad passed away at 9:50 a.m. on April 13th. I said we will win, and I meant it. What I didn’t realize is that the battle has only begun.

  5. andreaitis says:

    Very sorry to hear this, Nathan. We’re all thinking of you and your family…

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