It is Day 17. There have been some ups and downs for sure but nothing that landed me back in the hospital. What I could literally feel was my body stirring, struggling, and surprised. As Mariya’s cells populated my marrow, I experienced waves of a cellular identity crisis. My immune system died and I lived 2 weeks without that protective shield. And then, suddenly a little blip of white cells on the daily blood test. After that, they came roaring in, enthusiastic, like dogs on a beach run. Yesterday, the PA calmly said I was no longer neutorpenic and showed me the blood tests. They looked like gold but I had to ask to be sure. Does this mean I am engrafted? When she smiled and said yes, I had to jump up and give Mariya a hi- five!
What this means is my body accepted the graft and now has Mariya’s immune system. It means I can go out and have visitors. It is amazing and longed for news. I don’t feel any different—some days are good and some not so good. But I have been hiking uphill for a very long time and I just got to the peak. Anyone who has ever done that knows that the way down can be full of hazards and so you don’t let your guard down until you get to the bottom again. As I said before, a bone marrow biopsy next week will confirm how many of my own cells remain. If many remain, it is called a mixed chimerism, and that is not what they consider optimal (they prefer that all bone marrow cells are from the donor). The next stage to pass is acute graft vs. host disease, which can set in within the first 3-4 weeks of transplant. Chronic graft vs. host disease, which can be mild or very troublesome, can go on for weeks or months.
I read somewhere that the definition of an optimist is one who regards the process of “one step forward, two steps back as a sort of cha cha”. Right now, that’s where I am and where I want to stay. I know I will have some setbacks but I think this will be a successful climb, from top to bottom. As I have said before, I feel confident that much of this comes from the prayers and good vibes you all sent my way.
And when I dare, I have started setting my sights on getting home earlier than the prescribed 100 days. I think it can happen if my body can overcome the graft vs. host disease issues.
As I write this, one of my dearest friends is departing the world. I want to honor her vibrant spirit by living the life I have left to the fullest. Together, we explored God, creativity, coming of age, camp life, family life, friendship and work. Her imminent early death and this whole experience I have been through are reminders to do the work you came here to do, and to leave a legacy of love and gratitude. She did that, in spades. What else could be more important?
I read engraftment as “enlightenment”. What good news from the top of the peak. I am filled with tears of joy.
Greetings and congratulations. Re: the process of “one step forward, two steps back as a sort of cha cha”. I’d say, as a life long optimist, it is more like two steps forward and one step back! And it sounds as if you have made four or more steps forward, and I hope that it will turn out to be a run forward not just steps!
Hooray! Great news. A very touching last paragraph about a common friend. Love, Munir
Hooray! Great news. A very touching last paragraph about a common friend.
Shann, I’m so hopeful for you. I heard yesterday from Sam about Marta, and I’m so very sad to hear this. And YOU are amazing. Blessing to you all, and may Marta and her family find a deep peace.
OHHHHH, YAY, YAYAYAYAYAYAYAYAYAYAY!!!!!!!!!!!!!! WIth cautious optimism, but definite optimism we cheer, we smile, we shout: YAY!
I am so very happy for this latest news! I know that prayer works and will keep it up for your health. I feel so blessed to know you and admire you so much for all that you have and are going through. You are a beautiful role model, Shann.
“Filling up and spilling over, like an endless waterfall, filling up and spilling over, over all….” – Chris Williamson :))))
I love, and believe in, the cha cha!
Cheering you on for the sidelines,
Great news! We left the cabin today after 52 days in the wilderness , yes, we love it, but it is remote. We are heading to Bend tonight and on to Ashland tomorrow . We will continue our prayers and good thoughts coming your way…for all of you. God Bless you and keep you continuing to get better and better and better! XOXO
Sent from my iPhone
This is such heartening news, Shann!!! It puts a lift into a day of common things. the Dance has definitely become livelier! I continue to urge the Powers of the Universe to pay attention, close attention, to you.
Oh, thank Goddess! This is the most wonderful news! I know you have so much to do, to teach, and that you will make the world a more thoughtful and loving place. wow! this is a fantastic report .
Shann, thinking about you often and following your blog, I never cease to be amazed by your perseverance, optimism, and amazing family.
Wonderful to hear this, Shann!
“Engraftment” was not a word in my vocabulary but then again neither were alot
of the words or experience that you have opened my eyes to. I’m so grateful for
your news and recent evidence of full recovery. High five to all of you and your
friend network. Glad Scarlet was able to give Mariya the friendship she deserves
Sorry to hear about your dear friend. We are reminded of the preciousness of
life so very often these days. We’ve endured another forest fire in the neighbor-
hood recently and the “phoenix is rising” already!! A sure sign of hope.
To you: the best of everything life has to offer in the next (and certainly almost final) leg of this chapter of the journey. The next is waiting patiently.
Luv from Idaho, Julie
good stuff as steve would say. very good news, and life flows. chris
Okay: “do the work you came here to do.” Sometimes that’s so easy, other times not. But always good advice.
You and Marta are my sisters, and so attached in my heart. It’s been very hard to have both of you under siege! The love keeps on welling up and carrying me. This latest entry of yours, read aloud by Chris when he saw it come in on his phone as we stood in the street in Sisters, made me whoop! One, two, cha cha cha…
Wonderful, wonderful, wonderful. My heart is beaming for you. 🙂
Yes!!! Let us know when you are ready for some Pope/Gorenstein visitors. Lots of love to you and the family.
Yes!!! Let us know when you are ready for some Pope/G
Yes!!! Let us know when you are ready for some Pope/Gorenstein/Smith visitors. Lots of love to you and your family. Love, Sarah
Dear Shann, what wonderful news in your latest blog post. I am filled with hope. Congratulations on your progress! Janet
Great news from a great team! Shann, thanks for explaining all the medical procedures so well. We can have some idea of what you and your family and others with your diagnosis really go through to achieve a good outcome – and the way you and Steve express your unique outlooks on the whole experience is very beautiful, touching and generous. I am so happy to hear of your “Engraftment”. You are all very tough and very good.
Dear Shann, I wish I had responded earlier to your latest messages. I am so happy that the engraftment worked and that you reached the top of the mountain. No one could describe, as you have, what you have endured, with such humility and articulation. Steve- one of your many fans
Thinking about you …
Super great! Thanks for sharing this wonderful news. I’m sure things will go well. They did for me. Just be patient and do what the doctors and nurses say. Your body will take care of the rest. I’m 5.5 years out from transplant and doing fine. You will too!
Love from Steve and Susie