My New Mantra
Joanne Bethlahmy - Journal
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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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