Day by Day

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Out of the hospital is quiet and SO MUCH BETTER.  Just imagine so I don’t have to tell you the hard details; the ones I don’t want to relive. It would not be a poetic post. I can tell you this: I came out of 8 days in the hospital with a brain and body in shock. Put yourself there: The rounds of doctors and nurses and medicines –all of whom you try so hard to keep track of, all smiling, nodding, taking notes. For the first 4 days, I walked 2 miles everyday and was fully present with my family and the hordes of hospital staff who came into my room like an endless line of supplicants.  And then, I could see it, I started to give in. I just figured the new normal meant no sleep, constant interruption, feeling so nauseated and dozy that I could hardly lift my head. I hardly noticed who dripped chemicals into my veins, or the pills they tried to give me. I learned the subtleties and miseries of queasiness.  Now, it feels a bit like waking up after some kind of experimental torture facility, with nightmarish flashes of being half awake while they did things to me.

By the time we got to the Cottage, Steve and the daughters went into full nursing mode. I did not do much but lie in bed. It was a sleep I needed, complete with vivid dreams, which I hadn’t had in many days. My body refused most food and water and forcing it met with unfortunate reactions.WP_20130309_004

We are on a quiet modest street in the Maple Leaf Neighborhood, a place I have much admiration for, south of the Northgate Mall and an easy drive to Green Lake; my all-time favorite Seattle walking place.

The nausea and drowsiness have slowly gotten better over the past two days. WP_20130306_002My doctor took things into his own hands by ordering me to hydrate by IV daily and I took matters into my own hands by asking my daughters to buy me ginger caps, Reed’s Extra Ginger Beer, and ginger tea. Then I remembered the miracle of sea bands and put them on. Instant better. With my doctor’s OK, I was able to put the smallest smidgen of canabutter (no high, just anti nausea) on my toast. All of these measures have helped get away from the awful side- effects of the anti-nausea pills.  This has re-introduced the possibility for the miracle of appetite (almost there), and the desire to eat food.

I eat like a little kid, with sudden desires for ice cream, oyster crackers or pickles, ginger cookies or rice soup. But each time, I want not much more than the taste, done with the sensation and full after a couple of bites. 50% of us experience taste changes (dysgeusia) during chemotherapy, described variably as “metal mouth,” a bitter taste, loss of taste, or decreased ability to taste sweet foods.  So, I think I am just trying to wake all of those tastes back up.

WP_20130307_006Next time you smack your lips over something wonderful, let your appreciation of the food and cook runneth over, with great gratitude to your body for fashioning such a fun way to get nutrients into it. Sing halleluiah to the intense cravings, feeling like you could “eat a horse”, the smell and taste  of home cooked food, the subtle spices, the swirl and snap of wine, that frothy beer on a hot day, that first scrumptious bite of anything good, the smell and taste of wonderful restaurants, the early morning bakery sweet, the deep pleasure of coffee. Love it all. I will do the same with my infant desires, encouraging them to grow up.

I admit, the steroids they fed me earlier today are giving me some kind of weird energy. God knows I’ve had plenty of chemo today, along with the antibiotics, antivirals, antifungals. Still, without the anti-nausea meds, I feel better than I have for a few days. I can proudly announce that I walked on Green Lake for 45 minutes yesterday and it was absolutely beautiful.

It’s all, everyday, the New Normal. Now I go into a time when I am immune-WP_20130309_002system depressed. So everyday brings risk of infection.  Anything can change any minute. But then my friends, that’s always been true of our lives, isn’t it?  I have always liked the term ‘Currently Able” as opposed to “Disabled’. So much more accurate and humble.

The red and white blood cells have been largely killed. So, now I must grow them back. That’s what I pray for now. The very specific and life –giving miracle of growing blood cells back, and with them, an immune system that can interact in the world.

When I can I will respond; you are my lifeline. Keep your stories, photos, and comments coming. Every card and package has been so fun to open. They will be our virtual germ free meetings. Thank you deeply, my family, friends, communities.

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6 comments on “Day by Day

  1. I read this poem with my first cup o’ coffee this morning, feeling a bit indulgent until you bid us all to relish each of our taste buds as they awaken. Let me know if there is something I can eat for you. Miss you much, Ms. Shann. You are toasted many times a week with friends raising their glasses high in your honor, so you are with us in spirit. Hugs and more hugs.

  2. Love your description of food and savoring every bite. I promise to relish even more every morsel that goes into my body and bless the food that nourishes me and keeps me healthy. I will think of you and your path to health with positive reinforcement.

    Om Bhavam Namah
    I am absolute existence. I am a field of all possibilities.

  3. Hi Shann, we haven’t met but we have mutual island friends who’ve told me about your challenge. Leukemia may kill blood cells, but it can’t kill hope, and it sure can’t kill spirit; from what I read in your blog, it seems like you have all the “right stuff” for healing. Waves of positive healing thoughts being sent your way.

  4. Holding you and your family in loving prayer on this horrific journey. Thank you for taking is all along. You are an amazing teacher. Ginger and wristbands have helped me with motion sickness. So glad they work on chemo nausea too. Sending love!

  5. Hi Loves
    You were in my thoughts this morning
    waking up with tea in the garden
    I must have been sitting very still
    (green tea & jasmine perfumes)
    a courageous little bird sang her rhythmic whistle & tune
    the old thorny rose branch bending her a ride
    just there so next to me, a clear melodic triumph song.

    My love surrounding you like the birds songs ribbon the quince

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