Of wheelchairs, cold, Thanksgiving and bad hospital news

Dear All,

Well, the news is not good. The treatment doesn’t appear to be working. All tumors in my brain are growing and I am doing worse every day (literally). Losing control of my body, motor function, … you don’t want to know the details. Its not a pretty sight. My doctors are talking about hospice now, they have one more chemo option, but are also talking about stopping everything and “letting me go in peace.” Not quite ready for that, and besides, I feel all but peaceful right now (who would with that news?!).

So we are back to researching treatment options, side effects, trials the whole thing, except that I can’t contribute much at all since I am such a mess. My friend Nicola and Frank from Germany have helped a lot on that front in the past and are back on the “team” now as well.

Other than that my aunt & cousin came up from DC to visit for Thanksgiving, and brought the entire Thanksgiving dinner with them! My mother came rather spontaneously as well, so we had an American Thanksgiving with only 1 American, 4 Germans, + 2 dogs! It was very nice. We managed to finish off the Turkey in just 2 days! (and no, the dogs didn’t get to help).

Besides that, New York is freezing. Seems like we skipped fall and went from summer to winter. I have a wheelchair now. We are going through all kinds of different rental models trying to find the right one. Its horrible to be so dependent, but on the other hand, that chair makes me feel much safer, otherwise I could never leave the apartment anymore!

Thats it from
Shani/Beatriz in New York.

Ps: I might not be writing for a while, but wanted to send a post before things get even crazier.
And thanks to everyone for food and things, it’s one big worry off the list.

7 thoughts on “Of wheelchairs, cold, Thanksgiving and bad hospital news

  1. Amore,
    Sounds really, really difficult right now. You are so strong to be getting through this and even writing about it, it’s amazing. Lean on those around you all you can, and then some more. Glad you got the wheel chair, mobility is a certain freedom. And the dog! Yay for your dog and unconditional love.

    Hoping for you to find a treatment that works. There are so many doctors and hospitals in NYC, maybe it is the best place to be, even if it’s freezing. Happy to hear the food chain is working, wish I could participate in some way.

    Love, love, love,
    Praba

  2. Sending much love to you, Robert and Miss Lucinha (arf arf to her) during this difficult time. I’m on the meal train list now so very glad to be able to help out with that from Buffalo. Wishing you much luck with finding a new treatment. Stay strong in those shiny fab boots! xoxoxoxox Stephanie

  3. Through all of this you look so beautiful and fashionable! I am so sorry to hear about more disappointments with the treatment. Wish I were closer so I could spend more time with you, but sending you love and hugs from a far. and to Robert and the puppy too!
    Love,
    Natalie

  4. Dear Shani,

    I so wish we could have a walk together near the beach here where it is warm. I think I could even handle pushing your chair with Lucinha and Nietzsche on each side of my growing belly. Though it’s impossible for now, I just went there in a daydream and it feels almost like we are just back from a walk and talk with our usual post-sushi hot cocoa or tea.

    The boats on the water are ready to be lit here in LB. The doggie beach is calling for Lucinha. I wish I were there (or you here) so I could support you more tangibly.

    Sending you, Robert, and Lucinha hugs and sunshine from cali.
    xx

  5. b – I’m so, so sorry about the bad news but amazed, as ever, at your resilience and strength. I send all my love and hopefulness – is there anything I can do from here? help with research? Is there a way to join the meal-train from this far away?

    It is so nice to get a picture of you – I miss seeing you and you look wonderful all bundled up and sexy-booted – glad you are getting wheels – wish there was a way to teleport you back to ‘the spring’ for a relaxing hot-water soak and sunny california warm-up.

    big hugs and positive thoughts for you, Bob and the pup

  6. Shani, thanks for your note and the photo of you. Sending you much love and a big warm hug from freezing Helsinki. I’m glad and hopeful that you are looking for other treatment options. It is the Shani I know! All the best of energy to the three of you. Minna

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