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Posted 2019-05-10T03:12:00Z

Jiggity Jig

 

Hello everyone,

Lots of good news for this update.
 
First, I received the results of my first post-transplant bone marrow biopsy today. Everything is as the doctors expected. The MDS is gone from my blood with 0% cancer blasts!! And, the blood is 100% donor cells with nothing left of my bad old ones!
 
Having only donor cells will give me the best possible chance of continuing to avoid/recover from graft vs host disease and to eliminate the myelofibrosis (and maybe MDS, they can’t tell) in the marrow itself over the next 6-12 months. The fibrosis has already gone down from a level 3 before the transplant to a level 2. It takes much longer to transform since it is so imbedded in the marrow (and muddies up the marrow MDS results.) But, the fact that I have 100% donor cells, my blood counts are stable, and I haven’t needed any transfusions since the hospital are all very positive signs. Not out of the woods yet but all trending in absolutely the right direction.
 
What a miracle.
 
Second, I’ve been cleared to go Home Again, Home Again, Jiggity Jig in 5 days – on Tuesday! Seems strange and foreign after 3 ½ months away, but I am so looking forward to being in my pretty little treehouse again. My caregiver Aura is coming up for the first few days to help me transition, and I’ll have houseguests through June as well. Thank you Wendie, Jill, Jane and Julie. 
 
Sam is undergoing his own major changes with the litter box in a cage outside the cat door, no access to my bedroom, and mirroring some of my health issues. It’s a lot for a 16- year old kitty. I’m hoping that finally seeing me again and knowing that I haven’t abandoned him will bring him comfort and joy as well.
 
Third, my aerobic ability is coming back much more quickly than I expected, albeit a bit artificially heightened by the steroids. I walked 2 miles this weekend and did the Stanford tennis stadium stairs. Yo, Rocky! Again, just a miracle. Marin friends, I can definitely walk the bike path or Dawn Falls now and will be able to do moderate uphill hikes by early summer so get ready. :) 
 
On the other hand, don’t ask me to lift much right now. I’ve ignored any strength training so I’m now practicing with light wrist weights during evening TV. This isn’t helped by still looking like a famine survivor, but hopefully, this too will improve over the summer. Maybe being genetically a strong 20- year old male will help. The first order of business next week will be buying a cheap, short term summer wardrobe that fits. Damn, I have to shop.
 
Finally, I’m completely looking forward mentally and emotionally, which is a sea change. The whole last 9 months have been about survival and recovery without looking past the next crisis or milestone. Now, I’ve bought new dishes (random I know), am creating mood boards for new deck furniture, and have signed up for interesting Meetup groups. I think my spirit knows that I'm going to live, and it’s time to forge a more inspired, community focused and creative life.
 
Well friends, that’s all the good news that’s fit to print. Happy May!
 
XOXO,
Joanne

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Comments (21)

  • Anne Eisenberg
    Anne Eisenberg

    Joanne, What can we say, but FABULOUS!!!! And congratulations. The miracle of modern medicine is surely miraculous. Continue the good spirits; we are looking forward to seeing you home in your treehouse. Love, Anne and Hal

    7 months ago · Reply
  • Devora Lockton
    Devora Lockton

    Joanne, What wonderful news of your test results. Glad you can go back to your treehouse soon. Happy spring, love, Dev and Izzy

    7 months ago · Reply
  • Werner G. Butz
    Werner G. Butz

    Congratulation Joanne, we are looking forward to see and support you all the way. We are here, just call. See you soon, Werner & Qiong

    7 months ago · Reply
  • sandra weingart
    sandra weingart

    Woot Woot!!! So fantastic -- You are a resilient and amazing being full of love and light. HOORAY!!! xoxox!

    7 months ago · Reply
  • Julie Kaufman
    Julie Kaufman

    I’m thrilled by all this good news, Joanne!

    7 months ago · Reply
  • Jill Anderson
    Jill Anderson

    Joanne, this is certainly excellent news. In a YouTube story , called “How the Story Transforms the Teller”: “It is never, never tragic when something people think is bad happens to you, because if you can learn to use it right, it can buy you a ticket to a place you would have never have gone any other way”. Looking forward to where you will go that you otherwise would not have.

    7 months ago · Reply
    • Joanne Bethlahmy
      Joanne Bethlahmy

      I love this, thank you. It’s completely how I feel about it.

      7 months ago · Reply
  • Monica Turner
    Monica Turner

    Great news Joanne. Wonderful you will be going home to magical Marin soon.

    7 months ago · Reply
  • Pat Williams
    Pat Williams

    Fabulous news!! Great for you to go home! Sending love.

    7 months ago · Reply
  • Wendie Lash
    Wendie Lash

    So spectacular! You sound like a different person then when I saw you a few weeks ago. This is so wonderful. I'm looking forward to walking with you or doing whatever you are doing for exercise when I'm staying with you. Hugs and safe journey home.

    7 months ago · Reply
  • Gilda Turitz
    Gilda Turitz

    Such fantastic news, Joanne. After you get settled back in, if you are up for a visit, I’d love to come over and maybe even do a short walk with you.

    7 months ago · Reply
  • Kevin Woo
    Kevin Woo

    Welcome back. If anyone could do it , it would be you!

    7 months ago · Reply
  • Lisa Marks
    Lisa Marks

    I'm so delighted & thrilled to hear your good news (along with the rest of Team Joanne, obviously)! I love you to pieces. If there's any long distance assistance I can provide, let me know. Talk to you soon!! Yay, Joanne!!!

    7 months ago · Reply
  • Jane Moser
    Jane Moser

    Fantastic news. Isn't it amazing what medicine, positive thinking, hope and lots of prayers can do. Miracles! Yeah!

    7 months ago · Reply
  • Helen Rigby
    Helen Rigby

    I'm thrilled for you. Nothing like some young blood to kickstart those active plans into gear! Blessings, Helen

    7 months ago · Reply
  • Victor Koman
    Victor Koman

    Joanne! This is such fantastic good news! I am so happy and relieved that you're having such fantastically great progress. All your lifelong positivism and joy have served you well by joining with medical advances to bring about this magnificent recovery. Keep it up -- we are all beaming love and best wishes at you daily.

    7 months ago · Reply
  • Jennifer Laity
    Jennifer Laity

    HI Joanne. Wonderful news for you. It will be so comforting to be back in your beautiful home with Sam. Bob and I have been following your journey and our love and thoughts are with you as you venture forth. Cheering your recovery to good health. Jennifer and Bob

    7 months ago · Reply
  • JON C STINE
    JON C STINE

    Thrilled. What wonderful news. And because of it all, you now have to shop! Absolutely!

    7 months ago · Reply
  • Rosanne Ogles
    Rosanne Ogles

    Dear Joanne, I am delighted to hear your good news! How excited you must be to return to your beautiful home and Sam. Let’s plan a visit to Maui next winter with your Oxford gang. ❤️🥰🌴 Love and big hugs, Rosanne

    7 months ago · Reply
    • Joanne Bethlahmy
      Joanne Bethlahmy

      Yes! I can get on a plane again February 14!

      7 months ago · Reply
  • Jo Lynn Lambert
    Jo Lynn Lambert

    What wonderful news, Joanne! I suppose, in addition to those chocolate shakes, I'm going to have to add shopping in solidarity with you. :-) Love and hugs, Jo Lynn

    7 months ago · Reply