It has now been two years since my stem cell transplant. You count long term survival by one year, two years, five years and ten. If you make it to one year, you have survived the acute infections like the one that almost killed me when I was flown off island in December of 2013 and the ravages of acute Graft vs Host Disease. If you make it to your second birthday, which I did on August 21, 2015, it means that despite the bouts of CMV pneumonia and colitis that threatened my health and survival, I now can take refuge in the quote: “Most deaths occur within the first 2 years after transplantation.” I’m still alive. That wasn’t a given. I am grateful everyday for another day.
The article Long-Term Survival and Late Deaths After Allogeneic Hematopoietic Cell Transplantation concludes: “The prospect for long-term survival is excellent for 2-year survivors of allogeneic transplant”.
(Note: my transplant was haploid, from my daughter Mariya and there is not as much research about this newer kind of transplant. So we just need to rely on the available science.)
However, the article continues, “life expectancy remains lower than expected”. I stumble on this a bit, and then I come back to what I learned during my illness.
Life isn’t a given. Be grateful for the gift. Everyday.
Survival is not as important as a life well lived.
Grace and forgiveness are a way of being in the world that help ready the soul for whatever comes.
The article describes an analysis of 6,691 survivors who underwent transplantation for a number of blood cancers, … including mine … (acute lymphoblastic leukemia (ALL)) … who were alive and free of recurrent disease at 2 years after transplant, had a 89% chance of making it to their 5-year birthday.
Of course, the other shoe has to drop, of course it does. “Nonetheless,” the article warns, “late life-threatening complications occur, and these observations emphasize the need for prolonged follow-up to prevent, identify, and treat late complications to optimize long-term outcomes. Recurrent leukemia is the chief cause of death for patients who underwent transplantation for leukemia. Chronic Graft vs. Host Disease (GVHD), infection, organ toxicity, and second cancers were the next most frequent causes of death.”
The naturopath told me I’d been in stage 2 kidney failure twice. My heart, kidneys, intestines, and liver have taken a pounding. Will they be able to heal? I am hopeful. Chinese medicine and herbs provide the healing that allopathic medicine knows nothing about.
I always read these reports (which I do rarely) with a sensation of being on a slow motion roller coaster. They caught my disease early. That’s good. But 62 is considered an older age, which is bad. I did not have really bad GVHD, though it took a lot of prednisone to survive it. But those two factors (age + GVHD) are associated with greater risk of relapse. Between Year 2 and Year 5 is the greatest risk of relapse. If I make it to Year 5, the chances of relapse diminish.”
Sigh. So much gobbledygook. I made it to Year 2, hurray, and I celebrated my second birthday with dear friends and creativity, a massage, cake and presents. It was perfect.
This has been a traveling summer. We travel because we’ve always traveled together. And because we have family and friends to see. And because in some very real way, traveling brought me the greatest hope and desire to get better. Steve and I are in Alaska, as part of our yearly pilgrimage to the place where I challenged the world with the fiercest young adult energy I had, exploring wilderness and native villages, living in a hand built sod cabin without electricity or water and loving my sled dogs. Steve was mining and trapping and living alone on the Yukon, being a policeman and working on the pipeline. Together, we knit the kind of community that holds together when it is 50 below for a month at a time. We met on the Koyukuk River in the southern Brooks Range, and both daughters were born here.
I like to say those things out loud every once in awhile to remember they happened!
I have almost, but not quite, regained the casual expression of life that people who have never gone through a life threatening illness just have. I have the bounce back in my step, the capacity to eat nearly everything without feeling bad, and regained the muscles (and weight) I’d lost. But if the day is 100 yards long, my ability to partake in it all is about 80 yards. I just need more time to myself, and more time to rest than I used to. My brain was clearly injured by chemo and I am trying to simply be in that new reality. Interestingly, the right creative and big concept side is the healthiest, and the left, linear is the side that sometimes struggles. Perhaps this injury is still healing and needs to withdraw from the turmoil of the world to mend. I don’t know. I am different, and that is one quality I notice has changed. The changes are subtle but they are certainly real.
The summer home and traveling have been fabulous. I have felt good. Steve was diagnosed with Rocky Mountain Spotted Fever by the local naturopath. He was significantly impacted, with pain too strong to go easily about life. Despite the unpleasant side effects, the antibiotics he’s on have taken away the debilitation and allowed him to regain his mobility. Once again, we are out in the world in our way, meeting people, sticking to the low end of the budget, and following our noses to the next spot. We went to Montana for a Porten family reunion and to our beloved Unitarian Universalist family camp at Seabeck, Washington.
The world is full of so much pain and beauty. What a privilege and challenge to be alive and participating in the dance
I hear you 🙂 hugs
Thank you Shann for telling us how it is to be you – how you navigate, your epiphanies and your challenges. Your words express how precious and unpredictable and temporary this delicate thing we call our “life” really is.
It brought me great joy to see your smile and to watch you engage in casual conversation. For a time, there was nothing casual about your days. I celebrate your renewed strength and ability to travel and continue to marvel at the precision with which you described and continue to explain the “facts of life” as you experience them. Peace to you and Steve. Happy birthday, again.
Happy birthday, Shannon. I must say, you’re the most eloquent two year old I’ve had the honor of knowing. Across the years and miles I thank you for reminding me each day is precious.
Sorry about the name. Have I told you I fundamentally dislike Autocorrect?! 😬
Dear Shann, what an honest and real and beautiful update. AND congratulations on your 2nd glorious birthday!!! Sending healthy, smooth sailing thoughts for these coming years…starting right in this moment….and lasting through the many moments still to come. For me, what I’ve noticed from the journey that my family went through with the loss of my brother this summer, is exactly expressed by your closing words: “The world is full of so much pain and beauty. What a privilege and challenge to be alive and participating in the dance.” I have often thought this and have literally been taken aback by these very necessary and conflicting states. The pain at times seems extreme but then the joy is even more extreme. It confounds me sometimes and humbles me always…..AND YES TO THE DANCE!!
Anyway, my beautiful Shann (and I’d like to throw Steve in there too), thrilled to know you made it back “home” to Eliot…we were soooo touched by all the thoughts of many and especially the Polar Bears!!! Sending you and your most beautiful family many warm hugs, deep laughter, joyful song and as much nourishment from each other as possible. Much love, Juliana (and Dan) will let you know when there’s a window for us to venture south!! xoxo
Shann, so charged by your words and want you to know that you put a smile on my face. Let’s try to get that walk or cup of tea in before we scurry west in October?!? In the meantime, we will all keep on keepin’ on with as much grace and love as we can, won’t we?? Love you both, Cynthia
Happy happy birthday Shann! Sending my admiration, respect and love to both you and Steve. Your journey is an big inspiration and I’m deeply grateful that you have shared it. I hope you combine all the knowledge you’ve gained through this into a book so your wisdom can be accessed by all. Love your travel stories, and I’m happy for you and the August Eliot community that you were there. If you come to the Portland area, we would love to host you (in Vancouver) or just visit with you.
Happy birthday dear Shann. I celebrate you, your wisdom, courage, and compassion. Thank you for the lessons you teach and all that you share. Much love…..
Happy 2nd birthday, Shann, and many, many more. I have to say, though, that Steve looks less like a Desperado in that picture than he does in every day life. I love your family. Have fun in Alaska and tell any of our mutual friends hello.
You continue to inspire, Shann. Thanks.
Sounds like the energy is pretty high
To me! Lots of miles, nature, & good lovin along the way replenishes a lot.
Thanks for the update, the history I didn’t know, & the pics are Fab!! We’re
Lookin @ a frost this week & all our flowers turning to mush. AaAahhh Yes,
Autumn is great too!
Hi Shann and Steve, Thanks so much for sharing the story. You are an inspiration youngan! Blessings
Its great to have you both in Alaska. Hope you enjoy the trip to Homer! Joy
Dear Shann, Once again, thank you for your inspiration and reminder that each day is precious. There’s no way i can ‘know’ what the past 2 years have been for you, and, it has been an honor to be included. OXOXOX
As usual when I read one of these, I feel overwhelmed – by the daunting challenges you still face, knowing that you still are often not feeling your best, and now I’m sorry to learn Steve is suffering also.
You are so wise. Once I begin reading you, I can’t stop.
You still look young in the pictures though, Babe!
good ‘stuff’ ms. shann—-good stuff! a not so secret admirer——