Thank you so much for caring about me and my work! As you may or may not be aware, I have been experiencing a life-altering health challenge. I haven’t emailed broadly or posted about it on Facebook, yet. But now it’s time to get current. So this email is a perhaps-overdue update. Sincere thanks to those of you who have reached out and expressed your love and support in a whole variety of ways.
In a nutshell: On my 70th birthday, this past April 1st, I was hospitalized with a very rare cancer that had metastasized through my lungs to the point that I am told it is “very aggressive, Stage IV, inoperable, incurable, and very hard to treat.” It came as a huge shock, since I’ve stayed active, and noticed no symptoms until about 9 days before I was hospitalized.
I am richly blessed. For one thing, I have received SO much love, prayers, and many kinds of help from many friends, family, neighbors, and everyone involved in A New Republic of the Heart. I’ll describe all this in some detail, below, just in case you’re interested.
Also, there are a couple of links you may want to have:
(1) the CaringBridge site where my dear friend Deborah Boyar and I have been keeping friends and family current on my cancer journey.
(2) I’m deeply grateful to the many people who have made generous contributions to help bring the most effective treatments within financial reach at the GoFundMe page that Craig Hamilton and Claire Zammit set up this past week.
Below my signature, I’m sharing the whole story of what’s been happening for me. That may be a bit “too much information” so please don’t feel pressed to read on unless you’re curious to hear the story of my journey in more detail.
In practice and service,
Here is a long written “check in” where I share the journey of these last 3+ months, how it’s been for me, what I’ve been learning, how I’ve been growing, and where I am now.
Perhaps this is a bit long, or “TMI” so please don’t feel like you need to read it all. But I do want to share my journey if you want to hear it.
Happy 70th Birthday
As best as I can reconstruct it, it was probably March 23rd when I first became aware of the symptom that landed me in the hospital. I was biking back from our community dance, up the steep hill to my house. But I was huffing and puffing to an unusual degree; something was a little weird. In the following days, I noticed this shortness of breath again and again. Since I had received my 2nd Pfizer jab on March 17th, I imagined that this might be a somewhat unusual reaction to the vaccine. I’m generally in excellent health and pretty fit, so at first, I just assumed this was no big deal; I wasn’t worried.
But my shortness of breath didn’t ease; in fact it was getting worse. This was a really unusual reaction to the vaccine! And then, on Sunday, March 28th, I met up with my friend Roger Walsh and another good friend for a walk and talk. He observed that just 3 weeks before, we had been hiking, without me experiencing any difficulty, up and down a series of steep hills overlooking the bay. Now, suddenly, I was getting out of breath while walking slowly on an even surface. Roger’s a physician (as well as a brilliant transpersonal psychologist, author & spiritual practitioner). My shortness of breath was abnormal, and could be serious. He told me to call my doctor and get a workup — immediately. So I did.
My primary care physician referred me to a pulmonologist, and it took a few days to get scheduled for a visit. The pulmonologist had no openings until June, but the first step was to get a pulmonary function test. It was scheduled for Wednesday, March 31st. And the office unexpectedly told me I could see the doctor the following morning at 9:30 AM. That day, April 1st, 2021 would be my 70th birthday. It was clearly a significant day but it seemed important to see the doctor soon, so I accepted the appointment.
Well, from there, things began moving very fast. The doctor was alarmed at my diminished pulmonary function, intent on communicating the gravity of the situation, and stern as hell. He scheduled a same-day CT scan for early that afternoon. And late that afternoon, we met by Zoom and he told me I should pack up enough belongings for 4-5 days, and go to Marin General Hospital.
After a night and most of a day (Good Friday) of “hurry up and wait” I met the hospitalist assigned to me, and late Friday afternoon I was finally wheeled down to the interventional radiology department, where a liter of fluid was drained from my right lung. Appropriately enough, on “crucifixion day,” it began becoming vividly real that I will die, perhaps soon. I was certainly witnessing the scenes — the life experiences — that would logically play out if the movie of my life was about to reach its end.
Meanwhile, I began receiving loving messages from friends and family and a few dear visitors. Deborah Boyar, my beloved former wife and forever very dear close family, stepped forward to help in SO many ways and has accompanied me on every step of this journey. Roger visited me several times in the hospital and has attended almost all my important medical meetings, giving me the benefit of his sharp mind and medical training. My neighbors sent videos and texts and cards and offered to prepare meals. It gradually became obvious that I am surrounded by love, held by a whole network of deeply caring relationships of many kinds.
It was a vivid and intense weekend (Passover Saturday & Easter Sunday). The nearness of death became palpable, and I found myself realizing that if this was my time to go, that would be ok; I could let go, mainly grateful for the wonderful life I’ve already lived. And I trust the death process. It might be a huge ordeal, not less so than the birth process, so humility is certainly appropriate. And yet, from what I can tell, everyone who has gone near to death and come back to tell the tale speaks ecstatically about the sacred transformative beauty and revelatory power of death and life, no longer afraid of dying. Although dying might not be easy, it was clearly not something to fear, distrust, and avoid at any cost.
Even so, the process kept pressing deeper, and I became increasingly aware that this cancer could lead me into unknowable ordeals of pain, discomfort and indignity. But, mostly, I found myself recognizing that this was not just an enormous life transition; it was radical. The life Terry had lived for 70 years was, well, complete, over, done. Something new — perhaps a transition to the other side — perhaps, by grace, a new transformed life — would now unfold.
It was as if the loud, harsh final buzzer of a basketball game, “Zzzzzzz!!!” had interrupted everything, cutting through Terry’s life, bringing those first “threescore years and ten” to an end, and opening the beginning of something new. It really does feel like I’ve commenced a new life, or at least a radically new chapter in my existing life.
Hurry up and wait!
The next chapter of the story was all about the Unknown. From the beginning, this process was contradictory, kind of an experiential whiplash. It was urgent I immediately check-in to the hospital. But it took almost a day for the hospital to notice and decide to do the first step. That was perhaps understandable.
But then a new dynamic set in. Some of it was invisible to me, but essentially, the medical system was doing its job, trying to identify what kind of cancer was in my lungs. It wasn’t lung cancer. Nor prostate cancer. Not colon cancer; no, it was something quite rare — some kind of soft-tissue sarcoma. So the pathologist tried “protein staining” to identify it (the first avenue of diagnosis) and held back the whole sample for almost a month, performing a series of tests that ultimately became exhaustive. It was “none of the above.”
This was not immediately apparent. Each day and week, I hoped I might learn more, but nothing came. Meanwhile, after being released from the hospital, I was pretty exhausted. I was setting my alarm to allow for 10 hours of sleep each night, and I was also taking a couple of naps or rests each day. Gradually, after a month and a half, I began to regain energy and feel a bit more like my old self, though of course nowhere near 100%.
Dr. Lucas, the oncologist assigned to me at Marin General, had referred me to the Stanford sarcoma clinic. By the time I was able to meet (by video, thankfully) with my doctor there, Dr. Bui, the UCSF 500 genomic sequencing had been completed. And… again there was very little to go on. There might be a course of immunotherapy that might suppress the growth of the
cancer. There might be a targeted therapy that could work. But there were no clear mutations in my cancer genome that matched specific proven treatments.
At this point, I was told in clearer terms: I had a rare, aggressive, Stage IV, widely metastasized (in my lungs, perhaps with a couple of other centers, but that was not clear) incurable form of cancer. It had pervaded my lungs too much to be surgically removed, and too much to be radiated either. It is categorized as an “undifferentiated pleomorphic sarcoma.” I was told that there were only a few forms of therapy that might be appropriate — chemotherapy, immunotherapy, and “targeted therapy.”
The first treatment prescribed was chemo — using “Doxil,” a strong, slow-acting chemo agent. I would receive an infusion (~3 hours) every four weeks. It could be given here in Marin. It was a bit shocking to discover that I was being given five or so drugs through the infusion, and prescribed another 2-3 to manage side effects (of both the chemo and the other drugs. Sheesh!) But I weathered it pretty well. The infusion included a dose of dexamethasone, a pretty strong steroid, so I got kind of hyped and had a sleepless night. But mostly my side effects (nausea & fatigue) were mild to moderate, and manageable. Luckily, this also coincided with the time when I was recovering from my post-hospitalization exhaustion. I had more energy, and more mental clarity.
The next week (May 25-28) I finally was able to meet with several holistic, alternative practitioners who suggested healthy changes in diet & exercise, more precise blood tests (to detect imbalances), intravenous infusions, acupuncture and a metabolic approach to preventing the cancer’s growth through diet changes and more. This was invigorating and much more positive and hopeful, and it opened a new chapter in my journey. Simultaneously, I experimented with CBD & THC therapies and saw a specialist in the anti-cancer use of cannabis.
During this time, I was noticing a dull ache at the bottom of my right lung, which Dr. Bui says is due to the pressure of the large tumor in the lower lobe of my right lung. I also found that I was hypersensitive to THC and could not tolerate the medical cannabis. It disturbed my natural breathing rhythms, provoking cough or gasp reflexes, and on one occasion created a bit of a crisis. Based on this I requested access to oxygen at home, which I now have on hand.
One of the holistic MDs, Isaac Eliaz, an Israeli and a very serious long term Tibetan Buddhist practitioner practices in Santa Rosa, and he had been my personal doctor until he went on a 3-year meditation retreat (!) in 2008. He almost immediately recommended that I undergo two apheresis treatments, in which my blood would be filtered, to reduce inflammatory factors and to reduce blood viscosity (“sludginess”). He made it his first order of business to help the Doxil to be as effective as possible, and he thought aggressive apheresis might help. So I did apheresis twice in one week, right before my 2nd chemotherapy infusion.
Then, in mid-June, Roger and Deborah and I were able to meet with a very knowledgeable “patient advocate” in San Francisco, Dr. Renneker. He works with complex medical cases and specializes in cancer. He researched my case and spent enough time with us to educate us much more thoroughly about my test results, and the therapies that he’s seen produce improvements in others with my condition. He made us aware of a number of diagnostic tests that could help us to identify more effective immunotherapies, and he referred us to Dr. Sant Chawla, a renowned sarcoma specialist in Santa Monica, with access to a much wider range of treatment options than we had encountered until then.
A Sacred Process
Meanwhile, right from the beginning, I recognized this is most fundamentally a spiritual and existential challenge and an opportunity for transformation. Starting in the hospital, even before Easter Sunday, I recognized that if I had limited time, I didn’t want to waste a moment in resistance to reality. If this is my time to go, I knew I wanted to go with gratitude, wonder, and trust in the process.
Also, entirely separately, I experienced an enormous psycho-emotional release. All my life I had a sense of mission and purpose, and I sometimes wondered if I was fulfilling it as fully as I could, especially during this critical “unraveling” time in the human journey. Was I doing justice to and adequately sharing the many extraordinary blessings I have been given? Well, that “final buzzer” interrupted all such questions. It was as if God spoke directly to me, saying essentially, “You’ve done good. Good enough anyway. Call it a win.” So this time has been characterized by a dramatic energetic shift, and profound lightness of spirit. There’s been both grief and gratitude, but overall I’ve been far more joyous than glum. (Thank God for nearly 50 years of spiritual practice!)
Life is a potent teacher. And the lessons continue. There have been many ups and downs in my energy levels, breathing symptoms, and pain levels, and they’ve sometimes been kind of intense. On the one hand, I am learning to notice and awaken into and as the sacred miracle of existence, which cleanses my soul of darkness. And I am learning to soften into and accept even the experiences I would prefer to avoid or minimize. On the other hand, I am also learning to feel (and not bypass) all my human emotions. The nearness of death stimulates terror in many people. For me, not so much; I trust the whole process of living and dying. (After all, people who have had near-death experiences rave about its ecstatic and liberating implications!) But deeper than fear of death, if I let myself allow and fully feel the amazing sacred beauty of life, and the prospect of losing everyone and everything I know and love — I’m brought close to tears — a nearly-overwhelming bittersweet mixture of disarming grief and gratitude — happiness and sadness — my heart relaxing and yawning open in all directions — 360o. And of course, day to day, there are new challenges and lessons and new ups and downs, just like life always has — only now with death’s blade palpably close.
Last week (July 2) my 2nd PET scan revealed both good news and bad. The good news was that the cancer has not spread further outside the lungs, and the few suspicious places outside the lungs even seem to have shrunk. The bad news is that the tumor & lesions in my lungs have grown, not insignificantly (up to 50%), and other diagnostic data also indicates that the chemo is not really working as hoped. A new therapeutic approach will be necessary.
So, with Deborah’s devoted and amazingly competent help (in this and so many many other things!) I cancelled the chemo infusion originally scheduled for this week. Dr. Chawla graciously made time to speak with Deborah and me and Drs. Bui and Lucas. Although I became exhausted after several days of non-stop clarifying conversations and tasks and blood draws, I am grateful to be getting such good care.
It looks like my next course of treatment will probably combine two different immunotherapy drugs, hopefully adding a powerful but usually well-tolerated chemo drug. We’ll schedule the first treatment as soon as we’re able. My condition will be monitored via blood tests and PET scans every 6-8 weeks, depending on circumstances. There is good reason to hope that the treatment will reduce the size of the cancer in my lungs and at least stop its growth.
My breathing & speaking have become a bit more strained, and sometimes I get pretty tired. Naturally, I, and my team are disappointed that the chemo has not been successful. We had been expecting better results, so this has certainly driven home the reality that this is a serious and life-threatening disease, too. All that has been quite sobering.
But I knew all this was possible, all along. Additionally, I, and Deborah and Roger are all confident that I’m getting excellent care, and that the treatments we will be trying next are more promising.
I’m continuing to trust the process, open my heart, befriend all my feelings, behold the sacred nature of our so-much-more-than-human family environment, and I am enjoying almost every minute of this sacred mystery.
Ok, that’s my check-in!
With gratitude & wonder — and trusting the process of my life,