Not Everything Translates

Tag: chronic illness

  • a quiet battle ground blues

    I used to think that the hardest part of illness would be the pain, or the fatigue, or the word cancer itself. But what hurts the most is something else. Uncertainty. I have never been particularly good at it. I want to understand, to be able to orient myself, to know roughly where I am. When the body is no longer reliable, that becomes harder. When the future can no longer be calculated, it becomes even harder.

    There is a kind of irony in the fact that I have ended up with a disease that does not fit neatly into any category. It is cancer, but not in the way the word is usually meant. It is chronic, but not stable. It is slow, but constantly present. It can be treated, but not cured. It can be lived with, but never ignored.

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  • Quantity or Quality of life

    My quarterly scan is coming up, and with it comes stress and anxiety about the results. I think it will be fine. But how could I possibly know.

    I have a hormone-producing neuroendocrine cancer that cannot be cured, but can be treated. Right now my treatment has two parts. One is about slowing tumor growth, in other words making an already slow development even slower. The other is about reducing the production of serotonin, which causes major problems with my digestive system, flushing, and heart palpitations. My treatment means injections every other week and daily pills.

    On the surface of tumor cells there are small receivers called receptors. You can think of them as locks. The treatment works by using a key that fits into those locks.

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  • Coming Home

    I have been thinking a lot about what happens when I come home.

    The last time I went to rehabilitation, I rebuilt my body. Two weeks of steady training. I felt strong, almost high on the fact that my body could handle so much more than I had believed. When I came home, everything collapsed. Not because my body stopped working, but because everyday life returned in full force. So many decisions I had not had to think about inside the safe structure of the rehab center. So much noise. Relationships. Impressions. Everything at once.

    I could not cope, and I concluded that I was the one who failed. It became a kind of personal defeat.

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  • Existential Paradox

    There is a brutal paradox in being chronically ill and still fully alive.

    I see clearly.
    I see my body, my illness, my limits.
    I see the present for what it is.

    I also see the future, dimly.
    Because the future is already here.
    Not dramatic, not sudden, but stretched thin over time.
    A slow deterioration.
    A life that keeps shrinking, quietly.

    That is why clarity can become unbearable.

    People try to protect me from it.
    Doctors. Friends. Sometimes even myself.
    They tell me it does not have to be this way forever.
    That it might improve.
    That my body could respond.
    That the fog might lift.

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  • Trying is enough

    It is the third day after Christmas.
    I thought it would ease. It didn’t.

    For three days I have been caught in a carcinoid storm. My body is in absolute, wild panic and at the same time completely exhausted. My heart is racing. A pressure in my head creates the sensation of being a ticking bomb, about to detonate at any moment. The flushing comes in waves, affecting my blood pressure, and at times it feels as if my face is about to catch fire.

    My entire system is in revolt. And yet I know — I know — that this is physical. A backlash after Christmas stress, too much food and drink.

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