“Looks like your body rejected the T-cells”
My oncologist knew this because a few B-cells had come back. The “miraculous” CAR T-cells eat the body’s normal essential B-cells as well as leukemic cells. If B-cells are coming back, that means the educated T-cells are no longer present in my body. Which leaves me open to relapse. It is possible that they did their all the work of destroying leukemic cells and then disappeared. But no one knows.
“And my hunch is we need to assume the cancer could come back.” My typically unsmiling doctor delivered this news in his typical way. Two state of the art treatments and they both failed, I thought. Two treatments where I was surrounded by “the team” of doctors and treatments and nurses. This is not to speak badly about my hard-working oncologist, the one here in Friday Harbor, and the one at SCCA. But plainly speaking, the “team” approach sucks. I feel like a student who flunked out of school. You get the report, delivered by your oncologist, that the Tcells or transplant failed, but the team that was so much a part of your life simply vanishes without a word.
There will be no second transplant (too hard on the bone marrow and body in general). And no second infusion of CAR Tcells (wouldn’t work). More treatments are coming into the realm through immunotherapy. But not until late fall. The SCCA doctor (an ALL specialist) was worried enough to ask me to take ponatinib again.
Um yeah, you probably don’t remember my post about that drug, before CAR Tcells. Ponatinib’s (trade name Iclusig) a “tyrosine kinase inhibitor”. The latest generation of “nibs” that were a breakthrough for Acute Lymphatic Leukemia. Full of side effects so strong that people have died or had lasting major effects. One of them is to suppress the bone marrow. My bone marrow that was so injured that it took months for it to be able to produce platelets and red and white blood cells again. I am just now mostly normal.
So, even though my August BCR-ABL test (tests for presence of leukemia) was negative (deep relieved breath), he still wants me to go on Ponatinib as a prophylactic or preventive medication. Deal with the dangerous side effects or open the door for cancer to come back? I chewed on this for a long time, haunted by the choice. The bottle sat with my supplements as I searched for the courage to take it.
The Turn Around
In fiction, and in song, you need a “turn around”, especially when the story is leading in a difficult direction. I was worried about what I was telling my body. So I talked with my therapist who is a cancer survivor from stage 4-breast cancer. She is also taking a tough drug and will be on it indefinitely. And I was right to be worried about how I talked to my body, she told me. Together, we worked out a strategy to call Ponatinib a “healing medicine” instead of a “dangerous drug”.
She also reminded me about “individuation”; That Jungian concept that distinguishes you from everybody else. My first oncologist always called me “sturdy”, and I did see how I was different from other people in my response to everything from chemo to the transplant. In some ways, I was more fragile. But in many ways, I was stronger. My body has had the benefit of so much Salish Sea oxygen, wilderness, exercise, wild animals and landscapes— and always, the transcendence of trees. I am not sure where or how I learned to look and listen so intently at the beautiful world, but I always have.
I draw great strength from the simplest of things: roadside weeds, the sound of leaves falling, water of any kind. Because they are simple, I always have them in abundance. And I have this powerful family thing, this love and devotion to each other. I see this as a gift from Steve’s side of the marriage, and I am forever grateful for it. Both of us are natural community builders, and are surrounded by friends. We also connect to strangers, and that has been a pure blessing when we needed it. I am appreciative of my ability to connect through the internet, as well and through my imagination to stories of all kinds, so that I have not been as isolated as I should have been. Individuation. The unique me. A wonderful word. This now speaks to me strongly because it liberates me from fearing what happened to “most or everyone”.
The Beauty of Life
Maybe I just want to heal PTSD before cancer knocks at the door again. I just want the hours to watch the granddaughter shout at the CD Player while making dancing movements until I turn it on for her. When she danced, she made hand motions like I do when we are dancing in the kitchen. I want her to remember me. While “Forest Bathing” I stand in awe of trees I have never seen before, though I passed them for years, walking and talking with friends. The quality of light has already shifted to autumn. The tastes of summer are phenomenal. I want more time like that, please. I am already in that place where people think “why did I spend so much time working or worrying?”
You Got to Walk That Lonesome Valley
A friend of mine who recently returned from an Old Timey Song Festival spontaneously sang this as we explored an awesome low tide. She was appreciative of the wisdom in these old songs. “And sometimes, she said, “you DO have to walk that lonesome valley.” This struck me as one of the truest things I ever heard. We all do walk there, in between the extraordinary flashes of beauty and connectedness. I have just been lucky, in this world, to have had so much radiance all around the winding path.
What can I say but that your message is as beautiful as you are. Thank you for sharing this. I’m hoping that the T-cells did their job and left a memory of how to fight ALL in your immune system if it should arrive again. That leaves me to wonder how the drug interacts with your immune system. And that may be part of how each individual responds. I dream of your long and involved life ahead. Much love to you. Jill
Thank you dear friend. I appreciate you dreaming of my long and involved life!
Thank goodness for the goodness, beauty, & kindness that refreshes & sustains us.
Yes to all those things. I have had this in my life and you have been part of it.
You are always an inspiration. I love you! And I keep on praying for you.
Thank you, Gretchen! I am so sorry we didn’t get very much quality time at Eliot. We will make sure it happens next time! And thank you.
Shann, it just makes me so sad to see you dealing with this over and over. Please, Shann’s body, take it easy on her and be healthy and bright, and take good care. It was so good to see you at camp- enjoy that beautiful g’daughter and family for on and on… xoxo Sue
It seems to be my fate, Sue. That’s all I can say. I appreciate your good thoughts. I love your prayer for my body. Thank you.
Beautiful Shann. Big news. big sighs,
big love Big magic…
Speaking of which are we meeting tomorrow? I can’t remember if we decided to hold off till Sept… I’d love to see you either way… Hugs and love Liza
Thanks, Liza! We cancelled August, so I will send out a schedule for September. Yes, let’s get together!
Shann, I love you! I do. I love you dearly. Thank you!
What a special comment. I appreciate it. And thank you!
Thank you, my beautiful, brave, articulate, wide-open-liver-of-life friend. I appreciate your wise heart and your choice to stay in appreciation of all the gifts.. You are in my heart and in my prayers. Much, much love to you Shann!
Thank you, Nansee, that means alot coming from you. Much love back to you!
Witnessing you and my nephew, Joe McClenahan, going through this difficult journey is so hard yet I so love how you both are sharing your stories, being mindful and appreciative of life and nature, love, friends and family…. , such a lesson for all of us. to not take anything for granted. Thank you.
Wishing you strength and sending love.
I discovered Joe’s blog, and love and admire this man I barely know. Such courage and wisdom! Love to you and yours xxoo
I watched/read Joe’s blog. Oh, I am so sad he is going through that. Please tell him I am thinking of him with great memory of his strength and courage (after the explosion) even as a “youngen” at Eliot. Thank you…
I am touched and inspired by your words, and so timely, as I’m supporting my sister who just started lymphoma tx. Sending love and abundant hope for many Audrey dances ahead.
Thank you Ruth. Much appreciated.
Thank you for the update Shann. Sending you much love, hugs, and many blessings and I hold you all in my heart !
After 20 years in a row of going to August Eliot, Taylor and I stayed home this year. I’m in Europe now for 27 days and I couldn’t do both. Ciao from Assisi, Italy! 💙💙💙💙
Have fun Meredith! Thanks for reaching out all the way from Italy! We are planning a trip to Scotland and ireland. Would love to share how it all was for both of us sometime.
Shan,, I dare say, no one could express the thoughts, feelings & emotions of trial as eloquently as you. I miss those long thoughtful conv ed sations with you. You manage to infuse beauty into every breath. No life is long enogh to squander any time on the negatives. In all of our time together in what seems like a lifetime ago, I always came away with the positives. Praying for you, dear.
Wow, Susan–thanks. Your comment back to me have always been so rich and heartfelt. They mean a lot. Thank you.
Shann and Steve, we are all thinking of you both up here in Alaska, and sending love and positive thoughts. Thanks for this new update blog. Lots of love. Joy and Susan
Oh Shann. Sending you loving thoughts and wishing you many moons. xov
Hi Joy! And Susan! Appreciate your love and energy. Maybe we can finagle a visit in Portland in the next year? I would love that.
And I LOVED that last photo!
You may have walked that lonesome valley, but you have had so many people sharing that walk, without your knowing it! Ed and I have sent you some notes, but on other days you have been in our thoughts.
Here’s to you! Alice
========== Alice B. Acheson, Book Marketing/Publishing Consultant P. O. Box 735 Friday Harbor, WA 98250 360/378-2815 http://sites.google.com/site/alicebacheson Do It Yourself Life wrote on 8/28/2017 6:17 PM: > WordPress.com > Shann Weston posted: ” “Looks like your body rejected the T-cells” My > oncologist knew this because a few B-cells had come back. The > “miraculous” CAR T-cells eat the body’s normal essential B-cells as > well as leukemic cells. If B-cells are coming back, that means the > educated” >