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Posted 2020-03-21T00:28:48Z

Day Five of the Hostage Crisis

Hope all of you are staying healthy and sane in this Mad, Mad, Mad, Mad World. Here’s my update on the coronavirus, biopsy results, radiation, Jakafi, etc. Hey, at least it will give you something to do for five minutes.
 
Anybody else remember the Carter administration when the media started counting the days of the Iranian hostage crisis? Well, today is Day 5 of the new hostage crisis when for the second year in a row, I’m trapped inside with limited people contact. I know that I’m whining in the face of a global pandemic, but I literally just had gotten cleared to get on an airplane, eat sushi and use a hot tub. I was supposed to be in Hawaii on Monday, my first trip in 2 years. So frustrating!! Well, at least this time I’m not in a hospital room or a rental apartment but in my own home with a new kitty, and I can occasionally indulge in an adult beverage. Not to mention, everyone else is in the same boat.
 
Since I’m a year ahead of most people on the learning curve of how not to get sick, let me just reiterate the basics. In last year’s virulent cold and flu season, they kept me healthy as I hosted many visitors with no immune system. Trained by the best at Stanford… 1) don’t see anyone if you or they are sick or have been around someone who’s been sick; 2) avoid crowds, e.g. Safeway, Costco or Trader Joe’s at peak times; 3) wash your hands and wear a mask; and 4) don’t touch.  If we practice these basics, I believe that over time we can start to visit each other in ones and twos.
 
Turning from the macro to the micro, my health news is basically good. My disease is progressing but slowly, and I’m feeling a lot better with the new medication. Last week’s bone marrow biopsy showed that my percent cancer blasts have increased from 1-2% to 3-5% (leukemia is 20%+), and the myelofibrosis has returned to stage 3. So, not perfect but also not terrible. I just finished a short course of low dosage radiation to help the pain from bone lesions, and the Jakafi is really helping to eliminate other symptoms. So, I feel, dare I say, almost normal! The disease may be there somewhere, but I’m feeling more like myself than in a long time. I’m eating and drinking everything, and if I’m not careful, I’ll quickly outgrow all my new tiny clothes.
 
Most mornings, I’ve been doing YouTube yoga and my physical therapy exercises. (Big recommendation: check out Yoga with Adriene – awesome, free video library.) Now with less pain, I’m ready to increase my cardiovascular ability and looking for walking companions (with proper social distancing, of course.) The majority of Bay Area trails are open so let’s find some hikes to enjoy together.
 
I’ll attach a picture of my new foster kitty Missy. So happy to have someone to cuddle.
 
Hope you’re also keeping affectionate company.
 
Love,
Joanne
 

 

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Comments (11)

  • Holly Hurst
    Holly Hurst

    Joanne I am so happy that you are feeling more normal and it sounds like you have energy! What a blessing. I am so thankful! Missy is adorable and I am sure you are the bestest mama ever. When all this crazy is over, I hope to see you 😘 Love, hugs and prayers that you are on the upswing. Holly

    8 months ago · Reply
  • Anne Eisenberg
    Anne Eisenberg

    Hi, We are so glad you are feeling "almost normal" which may be the best any of us are feeling these days. This too will pass and you will be able to have your Hawaii vacation. We have been walking in this glorious spring weather and highly recommend it. We are glad we had lunch before "sheltering in place" set in. Love and hugs, Anne and Hal

    8 months ago · Reply
  • Monica Turner
    Monica Turner

    Greetings from York. Glad you are doing better. Looking forward to seeing you in the summer. Hopefully the lockdown will be over by then.

    8 months ago · Reply
  • sandra weingart
    sandra weingart

    Wishing you well Joanne and thinking of you often! Hopefully once this is over we will be able to plan a visit (here or there). XOXO

    8 months ago · Reply
  • Sumy Augenstein
    Sumy Augenstein

    So glad you are feeling better - sorry about the Hawaii trip 😐 - hopefully you can do it once this madness is over! And I can tell you from personal experience that it is better to be in isolation with a loving/huggy pet than a teenager mad at not being able to hang and party and have a high school graduation 🤗. Let’s definitely get together once the shelter in place is over!

    8 months ago · Reply
  • Julie Kaufman
    Julie Kaufman

    I’m so glad to read this news, Joanne. I have been thinking of you daily. You and I were well prepared for this shut-in routine, unfortunately. But I am relishing being able to outside with no mask and having the energy to do things around the house. Small blessings, to be sure, but I do find I’m appreciating them.

    8 months ago · Reply
    • Joanne Bethlahmy
      Joanne Bethlahmy

      Yes, exactly! Outside with no mask and able to do things around the house. Definitely small blessings.

      8 months ago · Reply
  • Wendie Lash
    Wendie Lash

    Joanne, Glad to hear that you have a new furry companion. We can facetime or zoom to connect or simple phone too. Bob and I are working during the day from home (and have been for many years) but the weekends are relatively free other than catching up with parents and family and friends. Stay well and thanks for giving us the Stanford cliff notes. Love, Wendie

    8 months ago · Reply
  • Tony Covill
    Tony Covill

    Hi Joanne, Very glad to hear of your encouraging news. Long may it last. We're looking forward to seeing you in, hopefully not-locked-down, London in July. We're pretty much locked down now and have abandoned Easter in Wales for the first time in maybe 40 years. Will send you further news by email. All love Bella and Tony xxx

    8 months ago · Reply
  • John Fleming
    John Fleming

    Hi Joanne, It's so good to hear good news these days. I am confident that you will keep getting better and better, and will soon be able to mingle with the world. we will all take care of ourselves and get through this. Hopefully in time for a fifty year re-union? Lot's of Love, John

    8 months ago · Reply
  • Stephanie Kirtland
    Stephanie Kirtland

    So so glad to hear you’re feeling better: have been wondering about you. Sad to hear you didn’t get to go to Hawaii but trusting that’s just a delay—& excited about your new kitty! Not sure if you’re coming down here these days but when this all lifts hope to see you soon. XO

    8 months ago · Reply