It’s not death, it’s the dying.

Drugs. Still, life?

In what may be the unkindest cut of all, having cancer doesn’t give you a pass on all the other ailments of (in my case) middle age: GERD, high cholesterol, high blood pressure, joint pain… I am dying of cancer but I want to be as comfortable as possible until then and I don’t want a heart attack or a stroke to put a cramp in my style while I’m waiting for the cancer to kill me. Put all this together and it spells lots of medicine.

To the left here you can see some of what I take every day. Unlike the United States, where patients receive their pills in a little vial with a label on it that, among other information, tells you how to take them, here in Jerusalem we get our medicine in boxes of bubble packs. There is no label on the box, especially when it’s something you take on a regular basis.

Now, I’m all in favor of taking responsibility for my health, but today I had a very scary experience. I came up face-to-face with the decline of my intellect and the dependence on others that is approaching as I move steadily toward the end of my life. It was a little thing, maybe, but incredibly significant to me and I took it hard.

The medicines for the coming month were all in front of me on the table and so was the partitioned case for me to put out my week’s meds. A looked at the case and I looked at the boxes and bubble packs and… suddenly went blank. Which one is in the morning and which is at night? Is this the one I take two of or is it the half-tablet? Wasn’t there something that isn’t every day or was that only because of the tests? What do I do with all this?

I started to cry. Not so much because of this moment of confusion, but because I was looking my future in the eye. The future of being unable to care for myself. The future of losing control of everything (maybe even my sphincters). The future of someone else deciding what I would take for pain and what I would eat and when I would have a wash and what books I would listen to – because I would either be unable to do it for myself or – even worse – would be deemed by others to be unable.

I was looking at the end of my life, not in three decades or more, but in just a couple of years. (I like to say I have two to five years left, but I pulled that number out of the air.) The end of my life.

Yes, yes, we are all going to die, and no one knows when. Take that as read. I get it. Yes, a rocket could fall on me or a car could hit me or my computer could electrocute me. I get it. But that is all very unlikely. It is not only likely but quite certain (barring an act of God, which by their nature are very rare) that I will die of metastatic disease and I will die of it very soon.

This might be one reason that chemo brain upsets me so much. I can manage the actual deficits with the little tricks and methods I spent my nursing career teaching patients. But it is almost a dramatic foreshadowing of what awaits me just a little ways down the road.

I’m fine with dying. I have very strong beliefs and death doesn’t frighten me. I’m even looking forward to “seeing” some dearly loved people who have died before me. But that whole “dying” thing – the weeks (months?) before death? No. Do not want.

I find myself with a new understanding of Dylan Thomas’s famous poem. Maybe the rage is not at “the good night”, death, but at “the dying of the light” – the decline of one’s faculties.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay, 
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

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15 Responses

  1. I am very moved by your words and don’t even really know how to respond adequately to them. I’m sorry about your tears. I’m sorry about all the meds you must take. I’m sorry about all the fears you must have. I’m sorry about all the uncertainties you face. I admire you for so candidly sharing about them here. You’re amazing and I just want you to know you aren’t alone. Thank you for the gift of your words. Thank you for your friendship. Just thank you.

  2. Very moving and very true.

  3. Scorchy says:

    {{{{{gentle hugs, my friend}}}}}

  4. Maxine D says:

    Oh how real your grief is, and how ‘real’ , read truthful and eloquant, you are in your sharing of it!
    Blessings and prayers

  5. steve wethington says:

    and until that day when i find self in same place, all i can do is say (((((((((((((luv ya knots))))))))))))))))))) and let you know how much i need these shares of yours most days…..

    growing older , yes. aches and pains, yes, knowing with some semblance of the “when” i don’t have as you do………….

    and for that, you are stronger then you know and luved too…………..

  6. heyjudyjudy says:

    I don’t know what to say to that. I have all kinds of feelings about it and the strong desire to find a way to take all that away so that you can be well. Your glimpse into the future may not be how it turns out, it might turn out that way, but then again it might not because its not here yet. You really can’t predict the future for sure. So, my conclusion is that it’s time to bring it back to one day at a time. And, I know you already know that…

  7. Sillyman says:

    The advantage of having friends all around the world is balanced by the impotence of being easily able to be present in more helpful ways. I trust – you have helped me do that – and yet beg for better understanding of diminishment. Surely I can pray “Take, Receive..” but I have yet to master the letting go required for the fulfillment of my request. The time nears for celebration of incarnation, flesh and spirit cojoined, not once thousands of years ago, but today, in this 24 hours.


    Per tuas semitas duc nos quo tendimus, Ad lucem quam inhabitas.
    “By your ways, lead us where we are heading, to the light in which you dwell.”

  8. Danny says:

    As always, you’re in my prayers.
    I know there are various phone apps specifically geared to assisting with medication that incorporate bar code scanning, but I wonder if there are any that simply let you recall notes you assign to a given bar code.

  9. Knot Telling says:

    Thank you so much, everyone for the comments here and privately. I am sorry that made some of you sad; I didn’t mean to.

    Apparently the main message that came across was “I’m dying”, but the message I wanted to communicate was “How do I live now? It’s becoming difficult.”

    To reiterate: nothing has changed, I’m no sicker than I was last week or last month. This is just another of my “life examined” ramblings.

    Thank you all so very much for caring about me!

  10. Thank you for sharing your truth, and for validating many feelings I have in my heart about facing the dying part of this disease.

  11. I come here often. Your’s is the hand I hold that doesn’t seem hurt by my need to. The view
    I have outside my field of vision. With words that support me, yet resists the need to demand some kind of return on that investment.

    For all of those things I hope you will except my gratitude and love.

  12. Knot Telling says:

    Shelli, thank you so much for your comment. It’s not easy, is it.

    Velcro, you are too kind. Thank you for your kind words. I wish you much strength and perseverance.

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