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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Joanne Bethlahmy 21 Comments

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