Dancing on The Edge of the World

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View from the treadmill on a rainy day.

Last Thursday morning, after 4 days in the hospital, I wrote a draft blog post that stated “I have not forgotten that the days immediately following chemo are often the worst—the worst nausea, the worst fatigue and fragility due to PTSD. I try not to anticipate it but I also know from experience what to expect.”

But I had forgotten. And, also, I hadn’t factored in the full impact of the 3rd round of Group A chemo alignment on a weakened system under sustained attack. Group A is a heavy hitter: a 24 hour drip of Doxorubicin, 6 doses 2 hours each Cyclhophosphamide (cytoxan), steroids and the push of Vinecristine. Then there are all the medications to protect you or repair you from the chemo, basically. And the shots, both of which I have learned to give myself in the stomach; once unimaginable.  One to prevent blood clots in the hospital and one at home to boost white blood cells. Funny skills to have, but I learned not to say I can’t do it when I had babies and also that any time you are asked to do things you think you could never do, somewhere, somehow, you find a way to do it

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Hospital days are exhausting for both of us.

Anyway, by Thursday afternoon, I started feeling bad in the hospital in the last hours before they released me. But I held it together until we “escaped.” When we got back to the Cottage, it was clear that I wouldn’t be keeping anything down (thought I would phrase that delicately, though delicate process it was not.) That night, the Doxorubicin burned through my body like a late summer grass fire. We almost turned around and went back into the hospital, but the doctor on call suggested we try to keep the fever down with Tylenol. This we did—or rather Steve administered and worried and tracked while I rode the ups and downs of fever.

The next day, feeling like a wounded animal lying deep in the brush, I hardly moved. 24 slow hours of lying in bed, working with Skeleton Woman to ease Hospital/Chemo PTSD, rebuilding my Self from the inside out. Slowly, the fever subsided. The nausea lessened.

On Sunday, I felt good enough to go with Steve meet Elena after her 11 mile run on Mercer Island. We walked at Luther Burbank Park and ate ice cream and enjoyed the beautiful June Day. I need those moments, just to be out in the world and re-myself stitch into it again. It is surprisingly easy to go around in a disembodied state . . .  too easy. You have to work to bring yourself back.

The fatigue has been hard, If you have ever had anemia, or worse, you know how challenging this can be, if you want to do anything but lie in bed.  I had a set back yesterday when I couldn’t keep food or drink down. I keep reminding myself “food is your friend”. I was always a good eater and loved my munchies, but I sure have a different relationship now with food. Without appetite, and with chemically altered flavors and a general metallic pervasive taste—eating food has become a duty, a chore—I must accomplish everyday, for the sake of my health.

After last month’s long trial with fevers and scare with the dangerous neutorpenic fever (where you have no immune system to protect you), I regard the month ahead with caution and full awareness of what is still before me. Isolation will continue to be a hallmark of my days, though the out of doors is open to me, just not crowds of people.

chicken192There is no matched donor for me. A matched donor would make all aspects of recovery and survivability better. But not everyone gets that. And I am one of those. So, we are trying hard to thread through the choices of cord blood vs. haplo. (daughters) The differences between the two are subtle, not well documented at this point. Though we have been invited into a randomized study, I have come to the conclusion I want us to make the decision, based on the best advice, which will probably boil down to “we don’t know which is best”. Studies in hand, we try to tease out things like . . .  is it better to have a long and scary engraftment time (time it takes for new immune system to begin in your body–up to 30 days) with cord blood or a slightly higher chance of possible relapse in the future? Which gives the better chances or less acute or chronic graft vs. host disease in the years to come, thus better quality of life? The docs say if they knew the answer, they wouldn’t need the studies. How is that for a puzzle to work through?

In the end, the four of us, our little family, will have to sit down soon and just make this decision, based on the best advice we can get. I think so, far, we are leaning toward haplo and Mariya has the best match by one more thing (no idea what to call it) that they try to match up. I think that will be our direction.

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Working with home health care nurse for home hydration.

So I have 2-3 weeks to be “out” and try not to go back into the hospital, walking twice a day in the never boring streets of Maple Leaf and various parks. My job right now is to try and not lose more weight, stay away from infection and regain some strength.

Sometime, after my white blood cells come back, at the end of those 2-3 weeks, I go back for one more intensive chemo hospital stay, Group B, Round 3. I am not sure how it goes from there. They may keep me in and go right into the even more concentrated 6 day “Conditioning” or Preparative chemo/radiation, where they kill my immune system.

Sometime in late July, we think—I will get my little bag of my daughter’s stem cells, and a simple transfusion will happen…and then it is all a waiting game to see how my body reacts. I have heard both horror stories and “no problem stories”.  All depends on every other factor, my health and will, the skill of the doctors and nurses, the Great Spirit and Angels, and the loving community that surrounds me.

As for me, I will be dancing on the edge of the world, walking the line between the Great Unknown and the very focused and detailed regime. When I have extra energy, more and more rarely, I am nourished by my love of frontier science, the beauty of the biosphere and quantum physics. Buddha, Jesus, the, Upanishads –and poets of all kinds run through my brain with all of it. The majestic spread of branches from an old tree lifts my heart—the representation—I am sure, of the Tree of Life. This enduring image will be with me everyday I am in the hospital.

eleph2I still concern myself with elephants everyday. They are one of many symbols for what humanity has agreed to trade away for its own self-vanity. Wild elephants have been with me on this journey since it began. Last night, as I went to sleep, I could sense the passing spirits of the great African matriarchs, touching me gently as they moved into the Great Spirit’s realm. I swear there was gratitude for the simple act of not looking away. For any who are interested in this work, I recommend the organization Elephant Advocacy http://www.elephantadvocacy.org/ and https://www.facebook.com/elephantadvocacy

They don’t shy away from what is happening but they also have some beautifully written pieces about the process of humanity waking up. If elephants aren’t your passion, you can interchange any other way that we need to wake up. And then, commit yourself to what actions you can take and witness it without flinching, so the consciousness of the world, and most especially, those in the line of attack, will know that someone cared.

If anyone wants to go “out there” and really see where my mind is clicking these days, check out Inner Worlds, Outer Worlds from Awaken the World on You Tube. You can watch it in 4 parts, which I recommend, because it is a lot to take in. I guarantee it is more engaging and heart enlarging than the daily news and grind would ever let you know. https://www.youtube.com/watch?v=08CnDSQelNg&list=PLD8E5F0D70B62BEFE

Oops! Guess I went off in a lot directions! It is fair representation of days spent without job, commute, TV, or socializing. There are days I am barely hanging in there, and days when my mind and heart just go out joyriding in a huge interior world.

spirit-doc4Bottom-line, I believe I will survive this. I will really need and welcome prayers and intentions and good energy to take into the transplant process.

This poem is from one of the wonderful cards that have found their way to me. This is my intention, my goal, and my focus for life after transplant.

“Afoot and lighthearted

I take to the open road,

Healthy, free,

The world before me.”

Walt Whitman

9 comments on “Dancing on The Edge of the World

  1. My positive energy is sent to you, as you requested, as well as that of the Universe and always do so without your asking. It’s just natural to wish for you all that is positive from all sources. Many warm hugs to you.

  2. Yet again you have touched my heart and soul. It amazes me how you, who have so much to battle, are sending out such strong and healing vibes for the least of us. Thanks. And I so enjoyed seeing your Steve yesterday. Love you .

  3. Dearest Shann and Steve, Thank you for sharing. I am so glad you have each other. Much love to you and the girls.

  4. Shann, I continue to marvel at your words. How they so completely describe such indescribable feelings and experiences. You bring me close to many memories and sensations I was never able to verbalize, couldn’t even understand but that are clear now and fully formed, three dimensional and in color thanks to you! So please, keep talking, keep walking, keep loving and telling us about it all, please. Love, Donna.

  5. Hi Shann, I wish I could take on your pain for even 24 hours – just to give you a break and also, to help me feel less helpless. What I can do, however, is share one of my favorite Robinson Jeffers poems with you, in the hope that it will ease your journey just a bit. It has always eased mine.

    Here it is:

    Flight Of Swans

    One who sees giant Orion, the torches of winter midnight,
    Enormously walking above the ocean in the west of heaven;
    And watches the track of this age of time at its peak of flight
    Waver like a spent rocket, wavering toward new discoveries,
    Mortal examinations of darkness, soundings of depth;
    And watches the long coast mountain vibrate from bronze to green,
    Bronze to green, year after year, and all the streams
    Dry and flooded, dry and flooded, in the racing seasons;
    And knows that exactly this and not another is the world,
    The ideal is phantoms for bait, the spirit is a flicker on a grave;
    May serve, with a certain detachment, the fugitive human race,
    Or his own people, or his own household; but hardly himself;
    And will not wind himself into hopes nor sicken with despairs.
    He has found the peace and adored the God; he handles in autumn
    The germs of far-future spring.
    Sad sons of the stormy fall,
    No escape, you have to inflict and endure; surely it is time for you
    To learn to touch the diamond within to the diamond outside,
    Thinning your humanity a little between the invulnerable diamonds,
    Knowing that your angry choices and hopes and terrors are in vain,
    But life and death not in vain; and the world is like a flight of swans.

    Robinson Jeffers

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