Using a big rock to try and kill a little bug in soft dirt

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My hospital reality: Nurse setting up the chemo.

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The inner picture that feeds my soul: from a walk at Cargeek Park.

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Back at the hospital. I had projected a lot of fear and despair into my memories about being here, remembering the sedation, the nausea, the tests, the darkness of chemo and so many people.  This time, the pace is slower; I recognize many of the nurses like old friends, I know the routine and, more, I know what to ask for. That means asking for nausea meds that don’t give me headaches or put me to sleep, and putting a sign on the door that basically says keep out when we need the quiet. I hope for less PTSD when I get out… but I am not sure about it. Five nights of peeing every hour while still wired on steroids can do a number on my soul. The poisons still drip with their accumulating toll. Dreams are the first to go, not to return until I get out.

I entered Saturday while Steve was returning from a short visit to the island with the companionship and support of Liza Michaelson and daughter Elena. Within hours, I was hooked back up to “Herman”, the ubiquitous IV Pole, and thoroughly on the Hospital Agenda. The IV Pole has to be unplugged from the wall and walked with me everywhere, even every hour to the bathroom. It is a tether, stopping any flow of spontaneous movement.

Rituxan was first on the list. This is one of the drugs that is actually specifically developed to tag (and kill) the proteins for my type of cancer. (wow, I am not used to saying that word. Cancer? I have cancer? I guess that still hasn’t sunk in.)  I like drugs that are specific. On the first night I was here this time, I began  a 24 hour dose of Methotrexate, the giant of the B-Round chemos. Within hours, I went from normal appetite to recognizing the slow approach of nausea, and then out came the anti-nausea meds and then the steroids, which pump me up so that I need lorazepam (Ativan) to calm me back down

Coming from a home where we make our green smoothies and take our probiotics, and enjoy raw food and religiously take our well- researched supplements (or at least, I do), it is hard to get it completely stripped away in this immune-suppressed, doctor-controlled world. And instead, you get first the chemo, then the rescue for the chemo. I love that one. First we will pump you full of this intense poison to kill all the hidden leukemia that we can’t see, but we know is there, and then after a few days, we give you a “rescue” to stop the cell-killing action. And when your level of this Methotrexate poison falls to a certain acceptable level, in 4 or 5 days, then you can go home and recover.

There will be other chemos in Round B, including the twice daily Dasatinib. This is the “Gleevec relative”, the drug that takes on the Philadelphia-positive chromosome. Before this drug, which was just approved, most people with this chromosome simply died. So, as the nurse practitioner said:  “it is a good time to have this kind of leukemia”. What’s a nettle-eating, smoothie-making wanna be locavore to make of all this? I take the pills they give me, and I don’t take the things I used to take now because my whole world is different. Raw foods could make me very sick, probiotics and certain vitamins are a definite, life threatening no-no.

I don’t fight this. I have surrendered to my own cognitive dissonance and the schedule drawn up by the medical team. I can’t make sense of it except to understand that this primitive way of killing off the body and stopping just short of really doing it is the only way they have right now of curing this disease. We may look back in 5 years and say wow, how barbaric. But without this blunt-edged approach, I won’t have 5 years. All this chemo… it’s like using a big rock to try and kill a little bug in soft dirt. You might do it. Or the bug might just burrow down further and not even be touched. And they know it and even say it.  Dasatinib is the only drug that I know for sure, and they know for sure, might really work. But under the theme that more is better, they use many other chemos, some that have been around for 30 years. So, I surrender. I take the pills. I let the chemo drip in and I try not to numb out. And, in the end, that’s the biggest challenge of all. How to allow this invasion with some grace—but not put up the big barriers that surround the heart and keep everything away—the pain and discomfort and confusion but also the vulnerability, the joy, the love and the healing. (See Ted Talks: The Power of Vulnerability. Very good.)

Which brings me to you, reading this. My heroic husband and dear daughters, my dear friends, members of my broad and vibrant communities, people I hardly know, people that I have lived alongside for years, strangers, old childhood friends … you have flooded me with your love and support. Your cards and messages and gifts and prayers neutralizes the chemo and the dreary effects of the chemicals.

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This is what makes me strong.

Let me say this stronger. The power of your love and support took ahold of my oyster heart and pried it open. It could have stayed closed tight for a long time, maybe forever, while the soft body of my soul hid away from all that was happening.  But thanks to you: your strength, your insistence, your love— I couldn’t keep it closed. And when it opened, of course, I have to throw in the pearl—the analogy is just too tempting and well, obvious. But, there it is—shining and translucent, the treasure of connection—from my life to yours. I cannot even begin to utter the words of gratitude and appreciation that would do it justice. So, a simple “thank you” will have to do. You make all the difference, day by day.

11 comments on “Using a big rock to try and kill a little bug in soft dirt

  1. Dear Shann:
    I know now, after your post today, that this the time to share with you a few stanzas from a poem/prayer from a book a dear friend gave to me when I began my battle against ALL. It was written by a woman called Marion Woodman in 1994, just before she began chemo and it speaks about the very “cognitive dissonance” you are feeling. I felt it too.

    If you would like a copy of the entire poem I will send it to you in the good old-fashioned post. In fact, I will probably just do that. For now, here are the first and last stanzas.

    “Dear Sophia, go with me. Please know that I am not taking my body into this holocaust without immense anguish. I would not injure any part of your earth in any way if I could help it — especially my own body. I still believe we might heal her together. But medical science says it can give me a (better) chance of life after cancer. I do not believe I am to die yet. And, for this reason, I am doing this horrendous thing.

    “…I love your Earth, my earth in which I live, move, and have my Being. I love you. Into thy hands I commend my bodysoul. She is frightened. Please help me to love her into knowing this is for her continuing life. This is not instinct. This is not nature. No, this is science working with nature to open new possibilities.”

    It does seem so counterintuitive do poison ourselves so we can become well again. But that is the way it must be done, at least right now. Thankfully, blessedly, the body heals and so does the soul. Your spirit knows and understands that you have to do this.

    With love,

    Erin (in Maine)

    • Erin,
      You continue to inspire me. Thank you. I would love the entire poem. I love this connection with Sophia. And your reminder that the counter-intuitive poisons can be healed by body and soul. I am in between that place of having no time but the present and then the possibility and the hope of a future to play out some more time on this glorious planet, to do my work, and learn my lessons, and seek the beauty. I suppose this is the lingering lesson of this experience, that this is all we ever have, that this balance between NOW and future will always play out in our lives.

      • It’s already in an envelope and ready to go! I am glad we are connected, Shann.

        Be as well as you can be in each moment as it comes.

        love,
        Erin

  2. Shann, the stunning grace you are showering over all the greyness and numbness of your hospital days brings solace to my own heart. You have a songline that will lead you safely through this wilderness, a songline that marks the wayposts, to lead you back to sustenance and strength. We all have our own songlines that help us through terrible droughts, stessful terrain, and those dangerous critters in the soft earth. Some know to sing the songline loudly, others wonder what the hell is that crazy melody… but to make it safely through you must sing. And everyone that reads your words is singing with you. I am singing particularly loudly today so that you can find your way through this ugly, mechanical, drug-filled regimen. I am singing you the songline of the ancients… so they will protect you when you are so vulnerable.

    • Dale, this is an amazing note. I am very attached to the idea of songlines, always have been. I was definitely born hearing my own, not sure who taught it to me, but I like to think it was the Earth herself. And she taught me the songline that runs through my life, here and everywhere. If others are hearing that, I am honored. If others are singing their own back to me I am amazingly blessed.

  3. I want to swoop in on Pegasus, pull you onto his broad back with me and fly you out of there! Escape with me for awhile, back to Neverland and our enchanted childhood. They’ll never miss you.

  4. Dear Woman – your courage and strength continue to inspire. Wish I were there to give you a big hug and massage. Picking nettles today in your honor. much love

  5. Let’s do! Second star to the right and straight on ’till morning. You can have as many green Peter Pan smoothies as you like. They’ll strengthen every cell and will be your sword against the dreaded Hook. Cheers!

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