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update seemed out of date before it was even written.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.
“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