Yep, it’s been very nearly a year since being diagnosed with acute leukemia in late February 2013. I have tried to be faithful to each stage through blogging, but this one has been the hardest. I have written this blog entry at least four times. Each manifestation has been different, with distinct tones, funny and light, hopeful, progress report etc. Then I sit and stare at it and erase. I might as well try to catch the wind and make it tangible. Everything in my life feels like it has been dumped out of the drawers and now needs organization and a place to go. That’s how it feels. We watched Captain Phillips last night and when, in the end, the military saves Phillips (Tom Hanks) and kills the Somalis and he is curled up into himself, in shock, and barely able to talk, I thought “I’ve looked like that so many times”. A part of me still does. Every time I came home from the hospital.
That is the dark of it—the memories. We draw in our breaths, waiting for the other shoe to drop, like it has so many times. At the same time, the progress is steady and real. We visit friends and entertain here. I wake up feeling good. I can even do something as normal and amazing as take a shower unencumbered by all the plastic needed to protect the Hickman. This piece of technology that I literally wore into my body so I didn’t have to punctured every time I got chemo for medication or blood and for the seemingly endless blood draws, has finally been removed. Standing under the flow of running warm water is indeed such a miracle. So . . . pause, drum roll, hooray! Triple knock on wood.
My hair is fuzzy, like a downy young bird’s feathers, still mostly dark, sprinkled with white too frequent to be negligible but not enough to dominate. Since it started growing first on top, I have a bit of a Mohawk, and Steve calls me Tweety Bird. The Cytomegalovirus is gone (a sign that Mariya’s immune system is working) and I am gradually being weaned off immune system suppressing drugs with no flares of Graft Versus Host Disease. For someone who had to sit down right on the road more than once to be able to make it down to our beach and back (about a mile roundtrip), my ability to walk easily now is another marvel. I now weigh about 110 pounds, enough to feel the roundness of hip again when I lay down, a lovely thing, and a reminder of being a woman instead of a skeletal 97 lb. girl.
Mariya has come to be with us for a month. She is our yoga teacher and helper/motivator in all things. Every morning we do yoga in the living room, all four of us. Jack’s yoga consists of one downward dog, then a restorative pose he holds for the rest of the session, following his breath in a gentle snoring sequence. Our moves are more complex, as we stretch our way out of a year with very little activity.
With her lovely young adult energy, Mariya poked and prodded us out of a lethargy that bordered on depression. That PTSD that had appeared around the edges of my consciousness had been quietly growing as our schedules diminished and the strict focus on medications calmed down. My way of fighting it for months had been distraction, which mostly consisted of hours on the computer, with twin Netflix and Facebook addictions. People would often ask me if I’d been reading. Well, no. I couldn’t concentrate on anything longer than a magazine article, a characteristic, I’m told, common to chemo brains. Now, I celebrate my slow return to books— but for months, during my most isolated days, it was me and many TV series and Youtube shorts keeping me company. For the first week with Mariya, I was horrified to learn that this had become my main topic of conversation as well. The couch, and my two-foot focus on a small screen, had become my most comfortable territory. Distraction and self-soothing were my weapons against PTSD.
Celebrating Kari’s birthday.
Now my practice is different. I’ve learned to “stop the world” regularly, to quote from Castañeda via don Juan. Projects surround Steve and me like puppies competing for their mama’s milk. Every time I sit down, I think of another, long put off item on my to do list. But winter is starting to pass the baton to spring here. The pussy willows are coming out, daffodils are raising their glorious yellow blooms, the male robins are back in fine style. If I died tomorrow, I would have wanted to truly notice this glorious transition. If I am lucky enough to live for many more years, which I no longer take for granted, I want to wade now into this Quickening of island life. Thanks to all of you who believed in this moment and who helped make it a reality.
A surprise serenade on Valentine’s Day!
Do It Yourself Life 
Dear Shann: I am so overcome with grateful emotion after reading of your wonderful progress, I just cannot describe my feelings. The bird songs, new growth on the trees and all else in nature are wonderful things, aren’t they?
I am coming back to WA. next week and will be so anxious to get in touch with my favorite Beachwatcher (and Survivor!)
You are a remarkable woman and friend.
Fondly, Shirley
Thanks again for your beautiful prose as you walked, crawled & stumbled through this chapter of your life. It has been so unselfish of you to share your experiences – keeping us all attune to what is going on without us having to bother you and your nourishing angels – Steve, Mariya & Elena –
I look forward to a glorious spring walk sometime – and possibly a resurgence of a St. Patrick’s day feast around our table together!
“Don’t ask what the world needs. Ask what makes you come most alive, because what the world needs is people who have come alive” – Howard Thurman
Cheers to your coming “Alive” in the days ahead. So grateful for this gift we all get to share!
Love – Cynthia, Christopher & Girls!
I’m reading your latest blood as I watch the succession of weather systems roll over us today….wind and rain and clouds and sun and repeat add nauseam. Looks/feels a little like your year. I see the sun coming again. Happy Day!
Oh my…I do need to watch auto correct. Blog NOT blood
You’re baaaaack! I will put your pipe to bed on the Spring Solstice, all being well and go on with my life as you go on with yours. SO HAPPY that you are well again. THE BEST IS YET TO COME! Love, Marnie
Tears of joy! I am so greatful for your writing and sharing, you have comforted me on the journey of this last year by being able to glimpse inside. I love you and the fam and am so greatful for spring!
Thank You so very much for your real, honest & intimate sharing of all things scary, dear and significant. It inspires me and I have deep compassion for your journey and lessons, realizations, enlightenmentS, & dreams. It is easy for me to see you & Mariya doing yoga and I vow to think of you each morning as I go thru my practice
& gratitudes. I hear she may be visiting us here in Idaho and I can’t wait to have her grace our house & family with her vital presence.
We seem far away from spring here under loads of snow but I too know it is there. We actually have NOT had as much as all previous years which is a drag for my
snowboarder sons, local businesses and summer fires. But it is what it is as you (they) say. Keep blogging. It keeps me real too.
Love from Idaho, Julie & Scarlet
PS Maybe Mariya told you that Scarlet has been accepted to her Masters program.
How satisfying it is to have them be supported in their chosen goals. How blessed
we are!
Congratulations Shann, Steve, Mariya, and Elena! May you savor many spring awakenings, for years to come! with love, Heather
Date: Tue, 18 Feb 2014 20:15:51 +0000 To: heatherkoponen@hotmail.com
What wonderful news, Shann. All of it. The dumped -out -needing- organization drawer, the fuzzy hair, the yoga, the PTSD, the awakening of spring, the immune system that is almost completely yours– it’s all good. Thank you for stuggling to be articulate– it’s a gift to the rest of us.
Love from me and Paul,
Nadia
Dear Shann,
You had said this post took longer to write than others. Nevertheless, I bet it was done more quickly than this very late response.
You may have had difficulty sorting out what to say, but this sentence does it all: “Everything in my life feels like it has been dumped out of the drawers and now needs organization and a place to go.” Bet you could craft a wonderful title from that!
And just using one example — standing under the flow of running warm water — to express your new life was excellent.
I applauded your realization of PTSD, “why” it appeared, how you expressed it. All were so intelligent, understandable, and realistic.
Yes, I am one of your myriad friends who truly believed in this moment because you and Steve and Mariya and Elena were united and powerful in the quest to arrive at this point.
Now welook forward to more of your wading into this Quickening of island life! It truly is a glorious time! I have a card I’ve been saving to send you, but it must wait about four more weeks.
In the meantime, after the next two weekends of teaching, I hope we’ll find another day — a sunny one, this time — for another walk!
Hugs, Alice ========== Alice B. Acheson, Book Marketing/Publicity Specialist P. O. Box 735 Friday Harbor, WA 98250 360/378-2815 http://sites.google.com/site/alicebacheson Do It Yourself Life wrote on 2/18/2014 12:15 PM: > WordPress.com > Shann Weston posted: ” Yep, it’s been very nearly a year since being > diagnosed with acute leukemia in late February 2013. I have tried to > faithful to each stage through blogging, but this one has been the > hardest. I have written this blog entry at least four times. Each man” >
Dear Shann, I wanted to write you later. Not now. I haven’t had supper yet and it’s 9 pm. I put away groceries that I bought tonight on the way home from work. I chatted with Sarah in the kitchen while she made gorgeous floral arrangements. Then she needed a break, so she went upstairs to research how to make Vietnamese chicken soup. For some reason Sarah didn’t get this email I’m answering. So I just came down to the basement to forward it to her before I forgot. Then I couldn’t resist looking. You always have such wonderful photos. And for the last year, looking at your face, one could be forgiven for thinking, ‘she’s not sick. She just found a new way to get attention. How could anyone be sick with such a beautiful smile?’ Then after looking at all of the pictures, I had to read a little. But I meant it. I would answer later. Pretty soon, I came to the end of your blog, Shann. It’s kind of hard to stop.. I always think, darn, I wish I read fiction, for the beautiful writing. I just got a good dose of it from you Shann, thank you very much. There are so many sentences along the way, that speak for all of us. You speak for all of us. Wow Wow Wow – I just get enthralled all over again, reading about what you have gone through, and your description of emerging onto the world of things we take for granted in ordinary life. It makes me so happy to read that you are walking farther, returning to being a woman, doing Yoga, saying g’bye to TV, etc. And to think you began your blog saying you couldn’t express what you felt. It was beautiful Shann. It stole my heart. Again. I was gonna answer later. But I just couldn’t wait. Love to you and Steve and Mariya and Elena. Steve
Mama, I finally read your most recent post and I am glad I waited for the time to properly absorb it. I felt your gratitude very palpably during my stay on the island, and knowing that I was helpful and that you are proud of me are the greatest gifts I could ever ask for. I could not ask for a higher honor or a more satisfying month than the one I just shared with you and dad. Seeing the daily improvements, feeling your love – It was such a critically important and restorative visit for me. Plus now I know how to name a handful of island birds! Something I have always wanted to be able to do. Every day I stop and wonder at the natural world and its beauty, its vulnerability, its ancient wisdom, and invariably that always comes back to thinking about my family and the immensity of the love I hold for you three. Go gently and healthy into this exquisite season of rebirth. Love love love.
Porten-Weston heart-string music; you do affect me so.