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
 [...]

Happy Super Bowl Sunday, especially to all of you in the Bay Area. Today is a good example of what will be one of my ongoing lessons for 2020 – finding happiness or at least peace in the present and not wishing for the past.
 
I’m afraid this update has very little good news. The transplant has failed. My cancers are back, having broken through the donor stem cells. From a medical standpoint, there is a small possibility of the stem cells reengaging, and the doctors are giving it a shot by taking me off my last remaining immunosuppressants. My healers are working hard at reengaging the stem cells as well.
 
The main medical focus will be reducing symptoms and hopefully slowing the growth of the disease with a medication called Jakafi, which I start this week or next. We will also start looking at clinical trials.
 
My diagnosis – again from a medical perspective – is fatal. Life expectancy is anywhere from 1-5 years, more if we hit the jackpot of a new treatment. I have a number of risk factors, such as >65, hemoglobin under 10, some night sweats, etc., which lower the expectancy. However, the Jakafi could raise expectancy. It’s simply a big, wide unknown.
 
So, the life question now is how do I want to spend my remaining time? The deepest answer is sharing love and time with my closest friends and family. So, please, help me keep my calendar full of visits (both ways) and shared experiences. Hanging out, finding fun things to do, weekends away, guests, staying over with you will mean a lot and help me stay less isolated and depressed. I can fly as long as I’m feeling well enough.
 
Organizing a couple of private group tours with my friends to some remaining places on my bucket list is a dream, e.g. Japan and Greece. I’ll just have to see how much energy I have and if there is any interest from you.
 
I’m likely to become more fatigued as the year goes on so will eventually appreciate help with laundry, etc. Don’t worry, I’ll ask.
 
On the fun side, where last summer’s steroid frenzy created a new deck, this latest frenzy resulted in a lot of new winter clothes hanging in my closet (all on major sale, of course). I am looking very fashionable these days. I’m enjoying it and trying not to think about how little wear I might get out of them. Jedi mind training...
 
Well, I imagine that’s enough bad news for one missive. Hope to talk to you all soon.
 
Love,
Joanne[...]

Hi.

Based on all the recent inquiries and confusion, I should have told all of you that I came home from the hospital on Saturday after a week's stay. Sorry! I'm driving down once a week for monitoring of the gut situation, including earlier today. My stomach is a lot better than it was before the hospital stay (with all those steroids, just call me Barry Bonds), but I'm still in some pain and working my way up (and back down) from liquids. I've lost 10-15 pounds and any recently acquired fitness so I'm kinda back to where I was when I came home in May. Sigh. At least I know it can be done....[...]

Hi everyone,

Hello from Stanford once again. This is a complicated and hard update to write, but your prayers, visualizations, etc. are vital now. After months of good news, I’ve had a significant  downturn and am facing two life threatening situations. My donor cells are active where they shouldn’t be (attacking my gut) and have almost disappeared from where they should be (making good blood cells)[...]

Hi. I’m in the old Stanford hospital, 300 Pasteur Drive, Palo Alto. Room E132. BMT unit. Hope to see you.[...]

Hi.

I will write more later but wanted to let everyone know that I will be checking back into Stanford Hospital tomorrow afternoon for 1-2 weeks. They need to fix the graft versus host disease in my gut as well as reduce the myelofibrosis, which has increased. I don't know my room number yet, but I will be easy to find in the BMT unit or via text.[...]

Hi all,
 
I just reread my update from June, and I had to laugh. I was so energetic and enthusiastic. Shopping! Decorating! Meetup groups!
 
Ah drugs.
 
Now that the steroids aka amphetamines have worn off, life looks a bit different. Don’t get me wrong: physically, I’m still getting stronger all the time. My blood counts continue to improve, and my spleen is no longer enlarged. I have pretty cute, very short gray hair. I’ve graduated to the fast walking group, and I even drove to Tahoe last weekend. (Thank you Laitys.)
 
However, I spend a significant amount of time tending to my touchy stomach and feeling tired and a bit depressed. I haven’t shopped, fixed up the house or gone to a Meetup group in weeks. I can’t even commit to a weekly one-hour class. When people ask me what I’m going to do with my new life, I have no answer. I just know what I don’t want to do right now, i.e. anything resembling work and stress. Basically, I’m a slug.
 
My Kaiser psychologist tells me that I’m just deeply fatigued in body and mind from this massive thing that I went through. Survival necessity and steroids were simply masking it for a while. He correctly surmised that I like projects and has suggested that I focus on Recovery for the next 6 months. I like this project since it gives me complete license to exercise moderately, nap, and stare into space.
 
My favorite thing to do, besides nothing, is to hang out with one or two friends with whom there is no need for small talk or effort. It’s just easy. So, please continue to call and make plans. I can drive to you now. 🙂
 
Being on a deserted tropical island with servants and a special someone also sounds perfect at the moment. Any suggestions?
 
Until next time,
 
Joanne[...]

Believe it or not, I’ve been home 5 weeks already. It’s been absolute heaven. The hospital and apartment trauma are starting to fade. If it wasn’t for the facts that I don’t have hair, take multiple pills a day, and have very little balance or muscle tone, I might be able to forget my recent Stanford foray. I really am doing great.
 
I have monthly checkups with my Stanford and Kaiser doctors and biopsies every 6 months. It’s like a tape recorder: the doctors ask exactly the same questions. “Any skin irritations? Any itchy eyes? Anything else unusual?” At this stage, they’re concerned with keeping me free of ‘GVH’ or graft vs host disease. I’ve already had one bout with ulcers on my colon so they want me to be vigilant. I’m more concerned that I have no vaccinations against anything and so have put a kibosh on any interaction with school age children.
 
After keeping the Gap in business, I’ve been spending most of my time creating a new ‘room’ on my deck and joining fun Meetup groups. All those steroid-fueled research hours on the computer in the apartment are coming to life. It’s transformation after ten months of focusing on nothing but survival and medical s*!#. Come visit, sit on my new deck, and let’s go to great (but not crowded) concerts and events!
 
I guess almost-normalcy is boring because I don’t have anything more to report. I just can’t thank all of you enough for your love and support. It has meant the world, and I’ll be looking for ways to pay it forward.
 
With gratitude and a full heart,
 
Joanne[...]

Hi everyone. After 3 ½  months away, I finally got home Tuesday afternoon, thanks to a smooth convoy from Menlo Park with Pat and Phil Williams. Thanks again, guys! You are the absolute best.
 
I ended up coming home alone without my caregiver, and it has been completely wonderful puttering around the house on my own with Sam, putting the place back together and resetting the energy. I’m clearing out old stuff, reorganizing drawers and closets, and planning new deck furniture. (By the way, the new dishes are gorgeous. 😊)
 
I am recovering so much faster than anyone expected. This week, my first week back and alone, I’ve been driving, grocery shopping and doing laundry without any trouble at all. There was no way I could have gone to Safeway, Trader Joe’s and Whole Foods in a row back in January. Bone marrow transplants are hell in a hand basket but truly miraculous when they work.
 
Send some gratitude right now to your red blood cells. You gotta love not being anemic!
 
XXOO,
Joanne[...]

Hello everyone,[...]