I think I will start with the non-medical story of how Steve hustled me out the door when I was still weak and getting sad in the dark cave on a bright sunny Monday last week. Determined to get us both out into the world, he asked me where I wanted to go and I said Rainier. He got a cabin arranged via friends, and Mariya and Will, who had just arrived in Washington, agreed to accompany us. I had never been to Paradise, nor had Mariya or Will. The drive up the mountain started to wake my slumbering senses; the hot day allowed us to drive with all windows open and the sound and scent of the cascading waterfalls, evergreens and ripening berries filled my heart.
By the time we got to the top, my energy was, to be fair, flagged out. Steve positioned the car with a perfect view of the Mountain and while the others romped in the snow, I rested in perfect communion with an elemental presence. Really for me, it was a gift not to move but to literally be LIKE the mountain and just face to face, witnessing the movement around us, the parking lot a half inch lake of water from melting snow, cars coming and going and enjoying the foreign accents of visitors in our national parks. The whistles of marmots mixed with ravensong and helicopters. Wafts of breezes came in through the windows, cool and pregnant with wet earth, snowmelt and emerging wildflowers like the breath of God. The Elemental is a healing place. Eternal, still, expansive. It was everything I needed.
After that, we drove to the cabin in Packwood and settled in. Again, because my energy can drop like a stone, I left the hustle bustle to others and stretched out on the porch recliner watch watching the light shift through the twirling leaves, the cottonwoods spilling their white tufts and all those amazing little gnats and other insects that seem to do nothing but swirl and drift and dance through the breeze. The stillness of my life right now is something I have rarely experienced. I do not multi-task in anyway, but just watch the world. I do this everywhere now, sitting n the car, at the cottage, out the hospital window. It helps me immensely to experience this quiet being at a time when my doing active body is so weak and changed. I can barely open a pill bottle but I can float my consciousness out into the world and witness it. There are so many things happening in the world hidden to humans only because we are all so busy all the time, we don’t notice. Now, that stillness is more common in my life than movement, I am rewarded by this other form of communion with the world. It is something I don’t intend to lose when I get better.
Anyway, determined Elena, who had to work, got off early and doggedly drove herself up in time for dinner. So suddenly we were a quiet woodland setting with the whole fam damily, including 2 dogs and it was, in a word, lovely.
The next day, we played and rested and the girls and Will went home. Steve and I spent another night and went up to Sunrise on the way home for another sheer treat of being above treeline with wildflowers literally springing up through the last of the snowmelt. I even felt good enough for a short walk in the sun. It shifted my awareness of my own health to be in the presence of such well-being and life. Just a little different than the SCCA routine.
And so, I carried that gifted energy into my last scheduled “Hyper-CVAD” chemotherapy (small frequent doses of highly potent chemo; CVAD is the acronym for the drugs used in Round A). “Herman” the IV pole holds only one bag at the moment, Cytarabine. When I have had 4 doses of Cyterabine and when I have been “rescued” (meaning the levels have dropped) from the Methotrexate, the 24 hour drip I had at the beginning, I can go home, hopefully on Tuesday. This hospital stay has been okay so far, busy. I have met with both the physical and occupational therapists to talk strategy about building strength back. All that weight I lost (now up to 117 lbs) was a lot of muscle mass. So, I need to build back strength in my arms and legs. The CMV counts prompted the visits of the Infectious Disease doctors. CMV is something many of us have but it lays latent in the body, suppressed by the immune system. But suppress that hard working system and suddenly CMV is on the prowl and growing in the body, and potentially wreaking havoc. So we are working hard to get the levels down.
And that dry little update is all anyone needs to hear about the hospital. It is that last scheduled chemo time before the induction chemo, which I believe can be done out- patient. It’s hard to believe I have been here for 6 rounds (7 counting the emergency visit where they tried so hard to figure out what kind of infection I had, which we think now was the CMV). By way of cheering me up, one nurse remarked “you’ve done most of the heavy lifting now.” It did not exactly cheer me, but there is comfort in knowing that some of the hardest parts of the trail are behind you. I hope.
It’s the transplant now that looms up with so many unknowns. What we do know is that we have chosen the haploid or haplo route instead of cord blood. The reasons were subtle and there is not much research to go on which one is better. Mariya will most likely be the donor, unless for some reason, her health assessment uncovers something unexpected. Haploid donors—those that are not a perfect match but rather a half match, a couple of years ago caused horrific issues with graft versus host disease, but the recent studies out of Fred Hutchison Research Center have found a way around that (simple; more chemo). Anyway, now it seems, they can do the transplant all out-patient, whereas it used to require long isolated hospital stays. That is, unless, you run in “roadblocks”. And that list is long and scary. So we won’t go there.
What I do know is this, and I’ll just give it straight and dry, like I have been getting it: The Induction process for both Mariya and me begins July 30. We will both be checked for health in every possible way. She will have to take the same shots in the stomach that I took to boost her own white blood cells for a few days. I will get to have induction chemo and tests of every part of my body, plus another bone marrow biopsy and many more spinal taps.
The transplant will likely be on August 20. For Mariya, that means a few days before she will have her stem cells harvested from her blood over couple of hours for 1-2 days. They will be replaced by her body over a short time. For me (and Steve), this begins the “100 days with a 30 minute leash to the hospital”. The month after will likely be hard, lots and lots of medications, visits to SCCA or hospital, and the potential for many unpleasant reactions. I will be very vulnerable to infection. Miraculously, this can be done out-patient—unless there are complications. That means the cottage instead of the hospital. Then, as Mariya’s immune system engrafts to me, and starts to work, I will slowly get better. I will have her immune system and her blood type. Maybe I will even be gluten-sensitive, like her.
With any luck, health will find its way back to me and hair will grow back and I will learn to eat again. My intent is to be back on island well enough to go for a walk and ready to enjoy Thanksgiving dinner.
I will be praying for the a successful transplant; that it goes well, and that my body reacts well and engrafts quickly to Mariya’s stem cells. I will pray for no infections and no complications and quick healing. I invite you to pray with me. Until then, I just need to stay as strong as possible.
Shann, you paint such a glorious picture of the mountain and the affect it had on you. I think of you so much and can’t even imagine (though you do such a fine job of explaining) the length of your days, waiting for this to be over. You have such strength and appreciation for your family and nature and your own spirit.
You have my prayers and love. Sue
Shann, you are my hero! I pray everyday for you, Steve and the girls.What a brave and loving family!
I cannot even imagine enduring what you are going through.
So glad you had a superb “nature” time at the Mountain. Good medicine for the soul at least.
My prayers and heartfelt hopes are for you everyday.
Very fondly, Shirley Zyph
Mariya’s stem cells may only be half a match, but they will be chocked full of a daughter’s love…what better medicine?
Shann, you truly are amazing and I thank you for sharing your journey in such a direct and honest manner. i think of you and your beautiful family and pray for your full recovery. So happy that you had your Mt. Rainier retreat. I look forward to the day when I again see you and your sweet boy, Jack, on the Land Bank trails. Sending you a hug.
And now you know why they call it….Paradise! As a child we went at least once a year. A pilgrimage place. I’ll pray for the specifics you mentioned. And for Steve. And for the girls. The lessons we learn, ready or not. With love to all, Nancy and David Jones
I only recently heard about and started following your story. Your courage and candor about your situation is what I would have expected from you. Please know you are getting all the positive vibes I can send.
Continue to live strong!
My good thoughts for success are with you always. I will think more often, more positive. I hope that is prayer……much love and hugs, Cathy
I continue to keep you in my thoughts and prayers. Hugs and love to you all. Cindy
Your beautiful words never cease to amaze me. I’m so happy that you had this wonderful time on the mountain. The day before I went to Boston for my transplant (in-patient, 31 days. I am awed by the fact that you can be outpatient for yours) I went for a short walk in our woods with my Steve where I, too, soaked up the quiet, powerful, steadfast healing spirit of nature. It was just what I needed to prepare for the next big step. It warms my soul to know that you have had a similar experience prior to your next big step. And that slowing, the new perspective you speak of. Oh yes. The unexpected and incredible gift that comes from all of this. For me, one of the big reasons that I can look back on my transplant and be grateful for what happened. Not just to be alive, but to be alive with new sight and understanding. I don’t know when or how I would have gained that otherwise.
The days to come will be hard but you are wrapped in and saturated with love and healing and prayers. You will be well my friend.
all the love, all the prayers, all coming your way.
We are rooting for you, Shann! I think of you when I pass your home here on the islands, where the air is alive with dragon flies and the zucchini are beginning to pump out their abundance. I imagine you home to enjoy it all, as soon as can be. Hugs to you, and to Steve Mariya and Elena; and how happy we are that we can send them on the net, so you can receive them when the in person style won’t do!
Shann & the whole “fam damily” — the magic of nature is surpassed only by that bright smile you wear in spite of (to spite?) the challenges you face. Hugs & prayers for all.
I am in awe of your strength, the love of your family and friends, and how articulate you are! Your writing is inspirational. I learn something or are reminded what is truly important in living life whenever I read your posts. You are in my thoughts and prayers. Nikki Ruggiero
I am praying with you. I understand the spaces between your words–my recovery period made me appreciate the stillness you perceive. Bless you, dear.
Our whales came back yesterday. I was out there in the foggy afternoon sun, and here they all came across the strait, leaping and sooooo beautiful.
Love to you.
Shann- Wonderful description of Paradise. Greg and I were there 2 weeks ago for our first Mt. Ranier visit. The mountain showed itself finally after 2 days of clouds, a glorious day of sun and then clouds the next day and no mountain. But we know it’s still there, right? As are the wildflowers buried under the snow. (There is a metaphor in here somewhere! 🙂 Glad your days of heavy lifting are less for the moment. Even at 117 pounds, and low energy, you are a mountain of strength, (there it is) Thanks for sharing your journey, including appreciating stillness and staying in the present. Love also to Steve, Mariya, and Elena.
Hello there aunt, what a wonderful description of you and the beauty that surrounds you( family, nature) I love reading your words and your accounts of your lengthy days even though I know it is not paradise for you. I think and pray for you 4 daily. I love and respect you all. Hi uncle Steve, love you! Always on my mind
Dear Shann, Steve, Mariya, and Elena,
Indeed, I will “hold you in the light”, visioning your gaining strength as if from the plants, the snow, the mountains, the waters, the skies, the birds, the communion between the four of you and the communion that you have created with all of us, your past stories and your future stories, the essences of life.
Thank you for sharing your story so eloquently and drawing on that incredible fountain within you that understands beauties and patience and serenity even as you negotiate mine fields.
May the Light always be there for you, however much it may wax and wane.
We will be looking for you to visit your Alaska home again in a year or two!
–love, Heather K.