My 14 vials of blood history.
The countdown to the transplant has begun. We said goodbye to my oncologist—until the transplant team releases me, in about 4 months. On Tuesday, the 30th of July, Mariya and I went into the SCCA together and began the process with a blood draw—12 vials for Mariya, 14 for me. Blood holds the key to so much on our lives, and each vial will tell a story of past or current infections, whether or not we have enough potassium or vitamin D, the current status of our red and white blood cells, and more. We each have our own team, from doctor to nurse, focused on us and our well-being separately from the other, as it should be.
We have left behind the smorgasbord of every cancer imaginable to a single-minded focus just for people with blood cancers who are getting transplants. “Transplant” is its own world and held well away from the rest of the hubbub of the SCCA, mostly to keep our fragile and weakened immune systems safe.
In this past week, I met with a bewildering array number of specialists—from oral medicine to pulmonary function. I got another bone marrow biopsy and spinal tap to be sure I am still in remission. I got another unit of blood while the nurse and PA came in to tell me what new drugs I would be taking. (The one I find most interesting: synthetic bear bile). Each night, I have come home, my head spinning, my heart wanting to hide in a Netflix fantasy, and my body feeling like a horse at auction that has been thoroughly probed and examined.
Sorting through the reams of paperwork.
Steve and I had a hair raising meeting with the attending doctor who warned us about all the side effects and possible things that could go wrong in the transplant. After that meeting, I seriously wondered if having a transplant was the wrong direction. Especially when she said the medicine had focused on quantity of life but they were just now really looking at quality of life after transplant. But it is no use asking questions, for the answer is always the same: “everyone is different”. So they don’t know. I don’t know. No one but God knows.
Don’t ask me what I feel, I don’t know that either. I feel the innocence of my body. It feels happy now that it is not assaulted with chemo and I don’t want to whisper out loud what I know is coming. The nausea and fatigue and big risk of infection that will follow the so-called conditioning chemo, radiation and the transplant itself. People tell me not to focus on that—to be hopeful. And I am, but also as Maya Angelou says: “Hoping for the best, prepared for the worst, and unsurprised by anything in between.”
I have lived my life by meeting it with energy, even if I had to hide out for hours or days afterwards to repair myself. That is how I know I am more an introvert than people know and why I fool them and often myself in the process. I could do that now—by telling you that all will be well. Instead, I will confess the things I fear before I tell you what lifts me up again. During the dark moments, I come to a place where there is no fooling to be done. I feel like a soldier who has been through several hard battles. Now on leave, knowing I must return to the battlefield, I struggle to stay in this moment—this goodness; where vigor belongs to me once again and appetite feels like the kiss of life itself. A cold shudder runs through me as I consider meeting once again with exhaustion so deep I feel more zombie than human. Nausea will wrap its cold arms around the center of my being. I will feel like a burden to my family. I become an existentialist who has painted herself into a philosophical corner.
Painting on the Transplant Floor.
And then, I do that crazy imaginative thing. I paint a window and I climb out of it. From this place, I witness myself holding all that dread. And I know fear of the unknown future is quite literally insane. I take a deep breath and I let go. When the Future is Now, I will know it, moment by moment. Until then, it is just thought. With my Beginner’s Mind learning as it goes, this happens several times a day—the apprehension, the epiphany and the rescue. A bright light shines on my family and friends, the life I have been lucky enough to lead, and the beauty I have beheld. My spiritual practice is to participate in life, just as my church is Nature. I wouldn’t want it any other way. I welcome this education. I never imagined that Cancer would be the teacher that it is.
17 days to transplant.
“By not knowing, not hoping to know, and not acting like we know what’s happening, we begin the access our inner strength.” Pema Chodrin
Do It Yourself Life 
Once again, Thank You for sharing your most inner thoughts, fears and realizations. It is as close as I’ve been to this process — and process it is!! I feel
intimately involved and rooting for all of you along the way.
My Scarlet is planning to visit Mariya sometime after she tends to these twins just
born here in Portland. It will be good for M & S to get together and nourish each
other and know how much love we have to share. We are so very lucky for the daughters we have raised to be adult, conscious, strong women with voices, minds,
and big, big hearts to boot.
Strength to you and your partners. Let Go and Let it In.
Luv Julie in Idaho
Mariya is really looking forward to seeing Scarlet! Me too! I really appreciate your notes of encouragement. I love your description of our daughters. We are truly blessed by them. I often feel like I am growing up again in Mariya’s company. I am so glad she and Scarlet found each other. I know they will deeply miss each other in the months to come, so glad to they they will get this visit in and hopefully, many more. Take care Julie and thanks for writing.
Great writing. Thank you for sharing. I love the painting on the transplant floor. Love to you all. Barbara
You truly are amazing. Thank you for all that you have shared and I am holding you in my heart and wishing you the best of everything in the days that lie ahead.
I am writing tonight too mama:) Oh my God, I love you so much it hurts. I am so deeply honored to have the opportunity to help you heal. Your beauty as a person overcomes me with gratitude. I know how strong you are, but also how vulnerable you feel, and i want to help you explore that vulnerability. Thank you so much for writing about your experience – it is such a beautiful, honest window.
Shann — this is a poem I have been saving to mail to you the old fashioned way. A dear friend gave this to me during the darkest depths of my transplant path. Now I have lost your address so I will post it here. I hope you see it.
love,
Erin
Friend, you lie quiet,
watching the dawn light color your heart,
dreaming of healing for your hurt body
laying there unanswerable to your will.
You breathe deep and your breath has two sides: inside and outside. You are on both, being breathed.
The future approaches. You will heal
or you will go back to being God.
Which will you do?
Oh, by all that is beautiful —
May it be that you live!
May your body heal happy and whole!
May energy fill and delight you!
May we join the dance your presence gives!
May you live!
And if you die?
Oh dear self, by all that is beautiful,
Know you are Safe! Everything is All Right
Forever and Ever and Ever!
The most wonderful, exquisite, familiar
Truth is what is True, and welcomes you.
It will be very easy.
You lie quiet now, praying.
A great healing is coming,
and you want to be ready.
The colors of your heart blend
with the light of the morning.
You are blessed.
–Elias Amidon, Pir (Spiritual Leader) of the Sufi Way International (from Prayers for Healing, 1997)
A beautiful poem, and perfect for this time in my life. Thank you. I will carry this, along with the Sophia poem, with me as I go. Your support continues to be immensely important. I so appreciate it.
P.S. Address is on right side of blog. But I am glad you posted it like this so I can share it.
I can say no more than Erin’s beautiful poem message. I feel my spirit reaching out to you to give you some of my strength. Though I don’t feel strong or battle tested. Just by teenagers and normal life. I give you as much strength as I can without being near. May your path be on the easier end of the spectrum and we will see you soon hiking nature’s trails, being able to touch people, kiss people and have all the germy things that nature provides in your grasp again without fear.
Love you – Jill
Shann, it is amazing how much you continue to inspire all of us even in this most difficult of times for you. Belssings to you and your daughter and all of your family.
Shann: You’ve been in my heart for all these months. Though I’ve not had the chance to talk to or see you, I’ve many times sent healing energy your way. The Sufi prayer sent by Erin speaks the ultimate belief: when you have inner peace, you are truly healed, whether to death or life.
I’m with you and the trees, particularly the “old ones”. I have a grand snag off my deck, the top part hollow, the lower half living gloriously. The Flickers do their courtship dance at the top, and red-breasted Nuthatches scramble up and down.
I’ll give it another 200 years….
I just got back from a wonderful trip to Eastern Europe. We have much to be thankful for here in the US. I am once again dazzled by your strength and beautiful writing. Good thoughts and hugs go to you and your wonderful family. Love, Cathy