Not Everything Translates

Tag: love-and-grief

  • packing up

    My journey is beginning to come to an end,
    and I feel done.
    Done and at peace.

    On Friday, I will check out of the hotel
    and spend my last days in Prague together with my daughter, Alma.

    I am so glad I chose to do this, just for me.
    I know it has been quite hard for those at home, especially for Alma.
    But I think there may be something valuable in that too.

    It may sound brutal, but to try, just a little,
    what it is like to be apart.
    To not have to hold on to each other in a tight grip,
    out of fear that one day we will no longer be together.

    (more…)

  • 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.

    (more…)

  • 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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  • 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.

    (more…)

  • Sanatorium

    So, I have gone away for a while.
    Just after New Year’s.

    I am here now. Alone.
    With myself. With my thoughts, my fears, my life.

    A month on my own, far away from everyone who loves me, needs me, and who grieves me a little all the time, even though I am still here. I have stepped out of their lives for a moment, or what may feel like an eternity, to find myself. Not again, but anew.

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  • The day I got my diagnosis

    I lie on the bed with my husband.
    We wait.

    We hold each other in silence.
    Sometimes one of us breaks into tears—quick, sharp sobs—then quiet again.

    Time stretches.
    And still, nothing prepares me for what I am about to do.

    The front door opens.
    “Hello? Mom?”

    (more…)