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Joanne Bethlahmy - Journal

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Posted 2020-10-07T19:52:48Z

Joanne Update

Dear friends and family,

With a heavy heart, I want to let you know that Joanne passed just before midnight on Tuesday, October 6. She was calm and at peace. She left this world in typical Joanne fashion. She decided that she was ready to leave, and she did![...]

Posted 2020-07-06T02:36:00Z

Take This Job and Shove It

Hi all,
 
I’m sorry that it’s been almost two months since I updated the site. I’ve been so exhausted - and often in pain - from all the hair pin turns, valleys of despair, sudden glimmers of hope, changes in doctors, endless appointments and procedures that I just haven’t had the energy to write. I’ve come up with several titles along the way: Mr. Toad’s Wild Ride. Stick a Fork in Me, I’m Done. A Sudden Leap of Faith.
 
In the end, I settled on Take This Job and Shove It…Unless It’s Working.
 
Beginning in April, the percent cancer blasts in my blood started to increase quickly. This is a key measure of the disease progression. I had been told by Kaiser that once they reached 20%, I officially had AML, acute myeloid leukemia, and would have months, not years, to live.
 
According to Kaiser’s lab, I hit 20% on June 13. I was alone at the house (of course) when I opened the results. In the two years of this journey, I can count the number of times I’ve fallen into crying hysterics on a couple of fingers. The two poor friends who happened to be home that night had to keep telling me to breathe, I was crying so hard.
 
However, as things seem to go with this odyssey, almost simultaneously I was introduced by an old client to a private medical clinic in San Francisco, Anatara Medicine. They are an integrative medicine practice that incorporates leading edge procedures not covered by insurance. I took several deep breaths, pulled out a lot of savings, and started seeing them on June 15.
 
My job today: leave the house at 8:00 am, drive into San Francisco, park in a garage, walk 2 ½ blocks (one uphill), sit for 5 hours with an IV needle in my arm, drive back to Marin, force myself to do a short walk, enter my door at 4:00, collapse, have a little dinner, and crash to sleep at 8:00 pm. Then, do it all over again another 3 days a week. The fifth day is generally devoted to Kaiser appointments, such as giving blood, getting a bone marrow biopsy or driving to Sonoma for radiation on bone lesions. (These are fun little side effects of my disease which create porous bones. Apparently, I broke a rib recently which is healing. No wonder my side hurt so much.)
 
So, as I said, take this job and shove it. But…
 
Last week, after two weeks of treatment at Anatara, my cancer blasts went down significantly. Depending on whether it’s the Kaiser lab or Anatara’s outside national lab, I’m at 14% or 9%. I’m trying not to dance yet because the blasts have gone down before and then sky-rocketed the next week. However, it is very encouraging. This hope is supported by energetic readings from other channels such as my healer, a biofeedback machine, and my astrologer. If there was ever a cross-your-fingers-moment, this is it.
 
Sheltering in place is making this even harder since I have to do all of it by myself, ill and anemic. Safe distancing visitors – or even help with driving if at all possible – are very appreciated. The SF clinic allows visitors (testing temperatures, etc.), and I’ve had people at the house for takeout, spread outside. Neighbors have also been good about picking up a few groceries since I’m avoiding crowds. Any get together that feels comfortable to you will brighten my day.
 
Much love, health and sanity in these times,
 
Joanne[...]

Posted 2020-05-13T22:55:00Z

Three Things I Know for Sure

Thank you for all the nice feedback from last week’s update. I’ve gotten a lot of encouragement to write more, especially about recent lessons learned, doctor stories and other topics that might help a few people. I’m still mulling over how to address these areas, but in the meantime, I thought I would share something a bit lighter, more fun and hopefully interactive.
 
Last year, when I was in the hospital for 5 weeks, my friend Kelly invented a super creative activities book to keep me amused. My favorite activity was to list 10 Things I Know for Sure, a nod to Oprah’s famous expression. I won’t bore you with all ten, but here are the three that resonate with me the most.
 
1.     You Need Intuition and Analysis to Make Good Decisions. Most of my yuppie friends tolerate my spiritual stories but in their hearts are very skeptical. They hesitate to dip a toe in these waters for fear of sullying their intellectual credibility. Conversely, my psychic friends often despise corporate types for being closed minded and are deeply suspicious of Western medicine. Me? I might be one of the only people on the planet with a JD/MBA who graduated from a clairvoyant program. I just think that God gave us two sides of our brain. Why wouldn’t we use both of them?
 
2.     People Who Travel Know More.  Recently, I watched a PBS series called Sacred Wonders which profiled religious sites around the world. I was so excited to see familiar places! I had been to 1/3 – 1/2 of them. Candidly, I’m proud that I’ve been to about 31 countries and 47 states. I love having that historical or cultural knowledge in my brain and finding links at odd times. I give foundational credit to my parents who somehow weren’t fazed by taking two children and seven pieces of luggage around the world in 1965.
 
3.     Everything and Everyone Can Leave. My father was almost a mathematical genius when he was young. By the end of his life, he had trouble with easy arithmetic. That’s when I realized that even our strongest capabilities will diminish with time. I’m still working on accepting gracefully the disappearance of old friends and close relatives. I tend to be deeply hurt and want to hold on, although I’m much better than I was.  It lightens the load to let go.
 
What are your top 3?
 
Love, Joanne[...]

Posted 2020-05-06T00:38:00Z

Day 50 of the Hostage Crisis

Many of my friends are still working and complaining about being stressed. Here, I’m pretty bored and boring. The birds are singing, and I can sit in the sunshine with the kitty. I’ve done a lot of easy yoga and physical therapy, gone grocery shopping at 6 am, taken four or five socially-distant friend walks, and twice recently had someone over for a meal outside, separated by a very large coffee table.[...]

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
 [...]

Posted 2020-02-02T18:17:00Z

Staying in the Present: Go Niners

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[...]

Posted 2019-12-28T02:15:20Z

Quick update

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....[...]