The Long Road to Bali

Back in 2010, Ken and I attended his 30th high school reunion.  We spent most of the evening talking with just a few people, including James Murphy, whom Ken had known since grade school.  James had left the area after graduation to live and work in New York City.  After about a decade, he discovered Iyengar yoga and by the time I met him, he was a senior teacher of the practice.  In the course of conversation, he learned that I took classes in vinyasa flow and suggested that we join him on a retreat to Bali that he ran.  I was all in, Ken not so much since yoga was not his thing at the time.  After sobering up, I had to agree that with the travel distance and our jobs and school-age children at home, the time was not right.  But the possibility stayed tucked in the back of my mind.

In the ensuing years, Ken started to study yoga.  He appreciated all the benefits of the discipline, especially his improved balance while fishing, and he developed a committed practice.  Sometimes we took classes together, sometimes he would attend a beginner class while I took an intermediate one.  2017 was a very difficult year for our family and yoga helped us manage the stress inherent in crisis and grief.  When our primary yoga studio announced a retreat to southern Spain in 2018, we decided we were ready for a return to travel.  There were about 20 attendees, with only 3 men among the women.  One of the teachers told me later that she was watching the two husbands to see if they were interested in learning or were just there because of their wives…and she could see that Ken was a dedicated student.  We enjoyed the trip so much we decided later that year to finally join James in Bali in 2019, and I reserved our spots and booked the airfare before the holidays.

We were scheduled to leave on a Friday in late February. Ken’s skin was itchy in January, a symptom of his Primary Sclerosing Cholangitis (PSC).  He wanted to wait until we returned from Bali to see his doctor, but I urged him to get it checked before we left, knowing that a trip to a third world country would be uncomfortable enough without dealing with an unresolved medical issue.  Unfortunately, the normally therapeutic ERCP resulted in a nasty bout of pancreatitis, which landed him in the hospital.  Worse, the blockage the doctor found was not the benign scarring of earlier flareups, but a malignant tumor: Cholangiocarcinoma.  And so to the normally overloaded days before vacation, we added appointments with specialists at four different medical centers.  At each consultation, our last question was always the same:  “We have a trip scheduled to Bali later this month.  Can we go?”  And the answer was always the same.  “Go.”  The doctors all knew: while some people live with this diagnosis for a long time, most do not.  Go, go to Bali for this trip of a lifetime with your spouse and savor these last days before everything changes.      

There were two options available for treatment:  surgery to remove the tumor and parts of whatever organs might be involved: gall bladder, liver, pancreas.  Or, neoadjuvant chemotherapy followed by a liver transplant.  This second protocol was considered potentially more curative than the first, since a whole new liver might also be the answer to the PSC, but the odds of the efficacy of the chemotherapy were only 60%.  And the chemotherapy had to be effective, because if the cancer metastasized, he would no longer be a candidate for either option.

With the trip approaching, we hoped to make a decision and schedule any action for  immediately upon our return.  The last piece of the puzzle was a liver biopsy…we figured if the liver wasn’t too degraded from the PSC, surgery would make more sense than risking the transplant route.  Scheduled for the Tuesday before our flight, the biopsy was described as a simple outpatient procedure although the surgical instrument looked pretty menacing: rather thin but surprisingly long compared to the size of a human torso.  I left the room and was reunited with Ken in recovery after a short time.  We chatted with the nurse and sat back to wait the required hour or so of post-op observation time.  Ken dozed while I worked on some lists.  And then he was awake and shaking.  Mildly at first, and then violently.  I hit the call button and then called out loud for help.  The nurse took one look at him and came right back with ice packs, which we quickly jammed all around his head, neck and torso.  My first look at sepsis.  This biopsy was no longer an outpatient procedure and I spent another night sleeping next to his hospital bed.  New to sepsis, I held out hope that we would still be on a plane at the end of the week, but reality quickly set the record straight.  There would be no trip to Bali for us in 2019.

The resultant treatments and progressing disease, coupled with the COVID pandemic, meant that Bali was again reduced to an unrealized dream.  In 2024 as I climbed out of the fog of Ken’s death, I decided it was time for me to book this trip that had simmered in my brain for nearly 15 years.

After over three weeks in-country, I am happy to report that I made it to Bali this Spring.  It was a great experience thanks to James, who has visited annually for over 30 years and has curated a complete cultural immersion which was much more than two weeks of yoga study.  I was fortunate to be part of a small group, the other participants all being students of James’ from his New York studio.  Perhaps because my only connection to the leader was through my late husband, and since Ken and I expected to enjoy this exotic place together, I frequently mentioned Ken, mostly in those moments I knew he would’ve loved.  It may have been off-putting for the rest of the group to hear my teary references to a dead person of whom they had no firsthand knowledge, but if it was they were very patient with me.

I read a quote this morning in the Asking Eric advice column, in letters dealing with discussing loved ones we have lost with strangers.  “His loss is as much a part of knowing me as anything you can see on the surface.”  It really rang true, and I am sorry there was no author listed to credit with this insightful perspective.  From the first sunrise as we sipped pre-yoga coffee on our perch above the rice fields, experiencing Bali without Ken made for many bittersweet moments, and I am thankful for the receptivity of the rest of the group since sharing his absence with others in those moments was an important way for me to cope.

I am excited to share other parts of the trip with you, but need some more time to recover from the jet lag and all the sugar in the Easter candy I’ve been nibbling on for energy.  In the meantime, I hope you enjoy the photo on the summary page of some traditional offerings I made and included in a tiny shrine to Ken at my bedside.