Tuesday, July 15, 2014

Finally, a new post !!!

Greetings, everyone.  I know it has been over a year since I last posted an update, and there is no excuse for that, so I won’t even try.  Perhaps I have been too busy just trying to live my life; perhaps my condition changed so rapidly that every update seemed out of date before it was even written.
            I hope everyone has had a chance to enjoy the World Cup of Soccer, or Futbol, as it is properly called.  These are some seriously good athletes, and the USA had a good run.  In the sport of soccer, there is time added to the end of every half or overtime.  This
“extra time” is kept tracked of by the referee, and takes into account the time delayed by injuries, arguments, and celebrations of a goal.  The interesting thing about this is that nobody in the stadium (save the ref charged with keeping this tally) knows exactly how much time is left, so the teams just play on until the ref blows his whistle, indicating the end of the half or the game.  I really cannot think of another sport where this is the case.
It struck me the other day that the last couple of years have been like “extra time” for me, an unknown quantity of time tacked on to the end, for which I have no choice but to “play on.”
            I was feeling quite useless a while back, after I had divested myself of all my former public incarnations: no more officiating weddings, no more teaching yoga, and no public poetry events except for the very few and far between.  I felt like a specter, a gaunt version of Skeletor that haunts my house, where Bruce used to be. I must have let slip a comment or two about this when my daughter, in her infinite wisdom, reminded me that this time has in fact been a gift. If I had died suddenly, or even much sooner, as most PC patients do, I wouldn’t have had the time to delve deeply into connecting with my children and my wife.  I cannot say that now; I was given the gift of time.

            So it was over a year ago that I came to the realization that western medicine had pretty much played its hand and could now only offer palliative care. Yes, there were chemotherapy options, but no good ones.  Frank discussions with oncologist revealed that no one really thought the trade-off of quality of life versus added time worked to my benefit.  In other words, I’m gonna ride this one out without the vain hope of chemo, and its inherent damage.
            When one gets to this place, you start to think of Bucket List kind of stuff.  I had always wanted to see the giant Redwoods of the northern California coast.  Amy and I headed that way just about a year ago.  We had a great time and I will link some pics here. To hike with Amy through the groves of the giant Redwoods was a truly inspiring experience. It makes one feel for life on this earth untouched by the hand of man. This trip ended with a visit to my dear friend Philip Gutt and his family in Corvallis Oregon.

Even during this time, my health was starting to falter.  My digestion was problematic and I was losing weight.  The time to act is now, we decided, and put together, in just a few days, a two week getaway to Costa Rica for all four of us!  Come August of last summer, we decamped for Central America. What a time and adventure!  Although the travelling was rough, it was a watershed experience for my little family.  Amy found us a wonderful house in Playa Grande, and although the good waves Myles and I hoped for never materialized, by the end of the trip we had all grown much closer and deepened our understanding of and compassion for one another.  We saw so much, from howler monkeys to fireflies, raccoons to frigate birds, flora and fauna of all sorts.  Costa Rica has done well as a country to protect its natural habitats, and this is a very good thing.  While in country, we were able to visit an old friend Louise, who is now living there, and on our way through San Jose, we were able to connect with my cousin Tom and his partner Emily, (a native Tica) who have also decided to make Costa Rica their home. 
About this time, I was presented with a delightful opportunity. Friends of my son Myles, Patrice and Keali’i, were getting married. I had always loved this wonderful young couple and admired their devotion to each other. I offered a Wedding Ceremony Guide, my self-produced booklet with ideas and outlines for putting together a personalized wedding ceremony.  We met, talked and I wished them well. Their wedding was to take place on Oahu, where they both grew up and have family. But low and behold, a couple of days later they approached me and asked if I would be able to officiate for them in October on Oahu! “We want you to do our wedding, Uncle Bruce!”
Well, I knew opportunities like this would not come around too often.  The only question was my health, which varied wildly, day to day and week to week.  I was on the verge of cancelling the trip on my bad days, but I knew I was meant to be there.  So come October, Amy, Myles and I headed to the Hawaiian Islands for several days of relaxation and wedding festivities.  The wedding took place on the windward side of Oahu, away from the hustle and bustle of Honolulu and quite beautiful.  Amy and I were amazed by the graciousness and warmth of the Hawaiian families involved, with gift baskets and events nearly every day. The wedding was beautiful, and I’ll never forget the look of joy on Keali’i’s face when his lovely bride walked down the path to the ceremony site. It was a wonderful and fulfilling experience, and a chance to wear all my Hawaiian shirts (aka, “Aloha shirts”) that I had collected over the years.  Myles and his friends had a chance to surf the north shore, something every serious surfer should have in his repertoire. A good time was had by all.
After that, Thanksgiving was enhanced by a visit from Amy’s brother and sister-in-law from the outer banks of North Carolina.  Unfortunately, my digestive problems kept me from fully enjoying the feast experience, but it was good to see family together in one place.
Christmas was special, and our annual Christmas Eve party was sweet and loving and very fun. I managed to put together a few good days in a row, which made me and my family very happy.
Soon after the New Year, the pain in my abdomen was growing worse by the day, and coupled with the intestinal upset, was rapidly rendering me only semi-functional.  After finally getting in with new, better and less expensive insurance coverage (thanks to the ACA and our President) I had an appointment with a new oncologist in February.  Although there is little to do from a western medical standpoint at this stage of my illness, the doctor did prescribe some pain meds for me. I had avoided opiates for as long as I could, fearing the side effects; but the time had come. I started on low dose oxycodone, and it was like a new lease on life.  I could face the day without pain for the first time in a long time.  But the learning curve for round the clock pain management is a steep one, and I keep either forgetting to medicate or trying to lower the dosage, leading to some painful episodes.  But I have now settled into a regimen that keeps most of the pain at bay and although I am often a bit foggy headed, it sure beats the alternative.
By April, I knew that something was wrong, as my fatigue grew much worse. That’s when I noticed the symptoms of blood in my stool.  Around this time, I had a wedding scheduled, and I was so devoid of blood that I almost fainted during the ceremony.  By Monday morning, I was being admitted into the hospital, and quickly given 3 units of blood.  Because the bleeding seemed to have stopped, I came home.

But a couple of weeks later, the bleeding started up again in earnest.  Again I went to the hospital and ended up spending 3 hellish nights in Scripps Encinitas, being scoped from both ends (colonoscopy and endoscopy) special radio isotope blood scans, and other tests.  They could not find the source of my bleeding.  I was told by the attending physician at Scripps to go home and call hospice.  Fortunately, the gastroenterologist in charge of my care saw a spot on a scan in my small intestine that he thought he could get to with his longest scope.  So once again I was put under and the scope was sent down past my stomach and just at the end of his reach, good doctor Mansoor was able to cauterize and clip off a bleed.  Miraculously, it worked, and my bloodwork slowly started to trend in the right direction.  I came home much the worse for wear.  Those three nights spent in the hospital were the very worst of this whole ordeal.  The good doctor warned me that the bleeding could start up at any time, however, and I must be vigilant.
As if this wasn’t enough to handle already, once home from the hospital, I found that I had some kind of circulatory problem in my groin, and without getting too graphic, one of my cojones swelled up to, let’s say to plum or tangerine size, with the attendant pain.  So while I am trying to build my blood back up, I am now hobbled by a very painful yet private “situation.”  In addition, there was swelling and some numbness in my left leg.  After some false starts with a GP, I was able to make my way to a urologist who informed me that I had a varicose vein that had a “blown out valve” that was causing the problem.  There is an outpatient surgery for this, but the earliest availability was about 3 weeks down the road.  I had little choice but to wait, which I must say made for a very long 3 weeks. 
Finally, the day of the surgery arrives, 6:30 am we are due at the surgi-center, and I am put under. (at this point, I am getting kind of tired of the anesthesia doses.) Amazingly, I am back home before lunch time.  So here I am again, recovering from some “procedure” yet again.  The doc said the procedure went well, although the recovery was a bit of a bitch, as the antibiotics they routinely give you made my bowls somewhat haywire, which only made the recovery more challenging.  When we changed the dressing, Amy and I found out that what we were told was to be a ¾ inch incision was in fact nearly 3 inches.  The doctor confirmed that two veins were involved, not just one, and that necessitated the bigger incision. But, thank goodness, the surgery seemed to work, and the testicle started to shrink.  Unfortunately, the pain only subsided somewhat, and I still have some swelling in my left lower leg, but I’ll take it. 
So that is where I stand today, all 140 lbs of me. I have good days and bad ones.  The fatigue level is startling, and I sleep a lot.  Because of the opiate based pain meds, I am no longer “allowed” to drive, and Myles has been the lucky recipient of my old Subaru.  Although going car-less seems to be the wave of the future, we are not there yet, and having to be shuttled everywhere is a humbling experience.  But Carmen and Myles have stepped up with the tasks of getting their dad where he needs to go (which is nowhere, most days), and helping Amy out with getting me to appointments, etc.  Like I’ve said before, my kids are great.  They make me smile every day.

            One of the most advanced practices of Tibetan Buddhism is the concept of meditating upon the concept of your own corpse.  It sound morbid to most western ears, but the purpose is to realize the impermanence of this material world and our time in it. When one is diagnosed with a terminal illness, this practice is there for the taking.  The absolute impermanence of our material existence becomes ever so clear.  One day I would bemoan my frailty and loss of muscle, the next day I looked in the mirror and thought, well, it’s only a body; I’ll be done with it soon enough, so what’s the big deal? From dust we arose and to dust we return. Letting go of our deepest attachments is both scary and freeing.
            So here I sit, most days, in a sort of divine limbo. If it is a good day, I can putter around the yard, do basic chores, etc.  If it is not a good day, I sleep a lot and accomplish nothing, except for finishing a crossword puzzle or two.  Poor Amy doesn’t know what to expect day to day, which is stressful unto itself and makes it very difficult to make plans.  But what am I to do, but to play on in this extra time, giving it all I’ve got and waiting for the referee to blow his whistle.
Until then, I wish you peace, health and happiness.
With love,
Swami bruce



  1. Thanks for the update, Bruce. I wish I could take a magic wand and wish all the hard parts away, but so glad you have the love of your family and your meditation to enfold you. So glad you had the chance to go on those marvelous trips with your family. You are always such a blessing to everyone that knows you! Myself, I still have a fighting spirit for you, but can also support you in the deep and wonderful acceptance what is. Love, Mary

  2. You are so blessed to have so many friends and such a wonderful family. I love you so much and always keep you in my prayers. Thank you for the update, you are a great writer.. love is everywhere, Spring

  3. You write great Bruce! Sorry for the challenges you are going through, your Spiritual perspective and attitude are truly inspiring, sending prayers and good thoughts your way.

    Mark & Betiana

  4. Hey 'Brucey'
    Even though I see you often, it is so great to read your insights about the last several years. It's not something we talk about in our 'daily' encounters, and I have to admit this is the first time I've even read your blog (I am such a poor online social media person).
    Know that I love, love, love you.... and am so grateful for the many many years of our lives intertwining - even since BK "Before Kids". Sending prayers your way, every day, always
    Catharine 'Faff'

  5. Hi Bruce! Jim and I just read your courageous and inspiring July 15 post. On August 4, we celebrated our 19th wedding anniversary and we remembered how wonderful it was, so many years ago in the lovely park above Del Mar beach, that you married us. How many other couples were likewise blessed by your loving, ever-caring presence!

    After we spoke a few weeks ago, it was a great relief and a surprise to discover you back once again in the communicator's saddle. Your heart and spirit are as powerful as ever, and your insights, profound. While we never know why life throws us curve balls, clearly what you have gained can never be taken away. Love and friendship are eternal.

    We'll be coming to San Diego soon. When we do, we hope to see you, if you feel up to a visit. We send you, Amy and your family our love and prayers, along with huge hugs from our home base up on our beautiful Mountain, Marcia & Jim

  6. Bruce--you are greatly and widely loved. The universe embraces you. May all of our journeys be blessed.

  7. Thinking of you Bruce where ever you are and wishing you peace. Much love, Emily