Friday, June 28, 2013

The Incredible Shrinking Man



Greetings, everyone.  Well, this week brought the calendar up to my oncology appointment, an impending date that has caused a lot of worry, stress and heartfelt discussion with those closest to me.  I am here to report that the news is not what I had hoped for. Not terrible news, but not great either.  It seems my pancreatic tumor marker has risen, and the spots in my lungs have grown measurably.  It would appear that there is active cancer in my body. On the upside, there appears to be nothing wrong with my liver and my other bloodwork came back just about perfect.  In other words, except for the small detail of cancer, I'm in pretty good health! I am currently asymptomatic, with no pain, shortness of breath, etc. I am for now deciding to forego treatment, which at this point is limited to chemotherapy.
I have been losing weight, however. This is problematic for a couple of reasons. One, weight loss is often a sign of active cancer; patients of this disease are told to monitor their weight. But in my case, the weight loss is more likely caused by the digestive problems due to the surgery I had (known as the Whipple procedure).
I will spare you the grisly details, but let's just say that diet and digestion have been a challenge for me ever since.  These last few months were particularly bad, and my weight has dropped to just below what it was in high school!  So if I were to try chemotherapy, with the attending nausea, I just don't see how I could get enough nutrition to keep from wasting away. This is very problematic.
It is an interesting dilemma, trying to put on weight instead of lose it, which I thought would be the issue at this time of my life. I cannot eat large meals; it makes me ill. Several small meals a day are what I can handle, and that is surprisingly inconvenient. I also get cold so much easier, being so lean. The warm summer weather is welcomed. And I am quite tired of buying new, smaller clothes, especially pants.  I am, in fact, the incredible shrinking man, a strange sensation indeed.  Amy has been a great source of help and insight on this.  She has tirelessly scoured the internet for information on post-Whipple diets and supplements, and has found me a potent hydrochloric acid supplement to replace what my partial stomach doesn't make, and some super pro-biotics that are used by the pros.  These two supplements, along with OTC digestive enzymes, have helped noticeably. I am being referred to a gastroenterologist, and I hope he/she can provide some more insight.

When one receives news such as this, it is like an invisible cudgel has whacked you upside the head. The stress of the tests and waiting for the results is quite intense. And as we all know, stress is not good for you! So there is a constant attempt at "staying in the moment" and not letting your mind get carried away. Being around my wife and kids seems to be very helpful with this.  In fact, every moment seems so very precious, when one is made aware of the finite nature of one's life. But of course, all our lives are finite; no one gets out of here alive, if you will.  So shouldn't every moment be precious? For all of us? It sure seems that way this week.

But also is the reality that life goes on, oblivious to your own personal drama. There are cars that won't start, rats to be trapped, runs to and from the airport, emails to return, meetings to keep, memorials to attend, basically all the minutiae of life that parades our way on a daily basis. Perhaps this is a good thing, keeping one from dwelling too much on the the ominous diagnosis. My son Myles' return to our home after graduating college has been a godsend, and buoyed my spirits. And another strong back around Rancho Pollo Gordo has been fantastic, and with his help, many delayed projects are getting completed. This, and the sweet and wonderful weddings I officiate keep me smiling.

Yet, like the tongue that cannot stay away from the rotten tooth, one's mind will find that "worst case scenario" whether you want to or not. I really cannot share all the intricate and even morbid thoughts that pass through me on occasion. This, I am sure, is part of the challenge and part of the process. If I can express on overriding idea I hold dear, it is that I choose quality of life over quantity. I do not really fear death, rather, I fear living with disease and debility. Like I said, quality over quantity.  Perhaps it is easier to say this whist I am still asymptomatic.  Time will tell.
What is obviously and painfully true is that my dance with this disease is not over, not by a longshot. I am still fighting for my health and healing.  Perhaps the new paradigm is "living with cancer" rather than "dying of cancer." I hope to wrestle this disease to a draw. Only time will tell.
I would like to thank all you that have been so supportive over this journey. The kindness that has come my way has often taken my breath away and moved me to tears. Strangely, it would seem we live in a Universe that is simultaneously utterly impersonal and full of love.  Go figure.
I send you this message with love and kind wishes.
Until next time,
Swami bruce



Tuesday, April 2, 2013

The Latest News




Greetings everyone....  

       As you can see, before the post about my dear Mother, the last blog post was in October.  That is quite a bit of time for an update.  At first, I regarded this as a good thing; sort of “no news is good news” kind of thinking.  I was looking forward, feeling pretty good, and generally just getting on with my life.  The holidays came and went, as they always do, and it was all good.  In fact, our traditional Christmas Eve open house gathering was epic! In its 26th year, we had a banjo player picking and singing to entertain us, and just an amazing fun and warm time, a reunion of friends and families that left us glowing for days.  The New Year dawned full of hope and promise.
In February, we shifted out health insurance and when getting on board with the new doctors, it was found, in a blood test, that although my “labs” were perfect, my cancer marker had risen significantly. The woman oncologist ordered an immediate CT scan, and the results showed some spots on my lower lungs. This, of course, was a very disconcerting development.  This young oncologist recommended immediate chemo, a 3 drug protocol of the particularly nasty variety.  I shared with her my “near death” experience with the previous chemo regimen nearly two years ago, and when I expressed my reticence to jump back into chemotherapy, she haughtily said, “Well, if my patients refuse chemo, then I usually recommend hospice.”  
I thought this was unbelievably inappropriate and even crass.  I knew at that moment that I was not going to insure my care to someone so insensitive and inexperienced.   I decided on the walk to the car that I would change doctors. 
I cannot express how this news affected me and my dear wife Amy.  My worst fear is the cancer returning, and that seemingly was the news.  The very act of entering a medical building brings anxiety, and I saw myself being sucked back into what I call the “medical-industrial establishment”.  Making any plans becomes problematic, and one exists in a sort of limbo. All this was happening during the week of my mother’s memorial.  I chose to keep the news from my sisters until after the memorial.   It was a rough week, needless to say.  
Through a connection with one of Amy’s home office management clients, we were able to get an appointment with a pancreatic cancer specialist at UCLA Medical Center.  Dr. Isacoff is the man when it comes to pancreatic cancer, and we were fortunate to get to see him.  West LA traffic is no place for the faint of heart, but with Amy driving the diamond lanes were available, and we made our appointment.  After reviewing my case, Dr. Isacoff recommended an altered chemo regimen, at a lower dose.  He offered to consult with the doctor in my network.  He dispelled some myths and added some clarity.  
I took this information back to a meeting with my new oncologist, Dr. Polikoff, with Kaiser  in San Marcos, hoping for the best.  Dr. Polikoff, a man of about my age, an athlete, seemed much more knowledgeable and involved.  He asked and answered a lot of questions. He showed me the latest CT scan on his computer screen and pointed out to me the actual spots on my lungs as they appeared in view.  Being able to actually visualize the situation in my lungs was a great help to me.  He seemed much more detailed and concerned with my health and quality of life.  He respected my commitment to exercise and health in general.  He made note that the spots were still small, and apparently not growing quickly, and that my general health was still good.  He also noted that my cancer marker, (known as the CA19-9 test) had apparently leveled off, at least for the time being.  Also my weight, which had been dropping, an ominous sign for cancer patients, had stabilized.
His assessment was that a much more cautious approach was called for.  He said, “If this is not behaving like an aggressive cancer, then we will not treat it like an aggressive cancer.”  He promised to consult with a radiologist to see if a biopsy was possible, and thought that chemo was not called for at this time.  After gearing myself up mentally and emotionally for the rigors of chemo, this was music to my ears!  I was fully prepared to start a rather nasty 3 drug course of chemo, but I had been granted a last minute reprieve, so to speak!  Amy and I walked out of the appointment with our heads spinning, having been whipsawed emotionally by the last two weeks of events. 




So I find myself once again in that strange limbo that cancer patients often find themselves; waiting for a very unknown future.  But in reality, this is true for all of us, is it not?  Anyway, I’ll take limbo over chemo-land any day, believe me.   I am counting my blessings and keeping my fingers crossed.  So much kindness and good will has come my way, I am grateful.  I have redoubled my anti-cancer regimen that I had become somewhat lax with.  I take my mushroom supplements, eat my cruciferous vegetables, avoid sugar, meditate, lift weights and practice yoga, drink green tea,  and the list goes on.  It is a surprisingly full time job!  I do see the toll this is taking on those around me, especially Amy, and I feel powerless to do much about that. 




I am very glad that I can keep the commitments I made to couples for their weddings; this brings me great joy.  I want to make the most of this time of focusing on my self and my health.  Amy and I are planning a trip to Carmel to reconnect with an old friend of mine and my 40th High School Reunion is coming up in June.  Perhaps more travel is in the works, if the winds be favorable.  Until then, may your homes be peaceful and your efforts fruitful.
Peace,
Swami bruce


Rebecca Monroy Stephens
May 5th, 1924-February 15th, 2013

It has been an eventful time in my life of late, and I would like to share the news of the passing of my dear mother Becky.  I will share some words that were spoken at her memorial. 
This is the eulogy delivered by my sister Sarah Green:

Eulogy for Mom

     Our mother, Rebecca Monroy Stephens, was born, at home, on May 5, 1924 in downtown Los Angeles. She loved the fact that she was a true native Angeleno and would say that she was born in the “shadow of city hall.” Her parents, Herlinda Picos Monroy and Jose Maria Monroy had come here from Sonora, Mexico to start their married life. She was the second of five children and grew up close to her siblings. Her father left the family when my mom was very young and she never saw him again. Fortunately, my grandmother was a strong woman who worked hard and was able to keep her young family together. Though my mom was afraid of something happening to her mother because it would probably mean that she and her siblings would be separated, she had nothing to fear. My grandmother lived to the age of 90!
        Though times were tough it was a gentler era in many ways. My mom grew up in a supportive neighborhood of Jews, Italians, and Mexicans. An Italian lady down the street taught her to knit. More than once an older Jewish woman saw their poverty and would cook an elaborate dinner only to deliver it to my mom’s family when her sons “unexpectedly” arrived to take her out to dinner. Such was the kindness of the day.
     My mom spoke Spanish at home but learned English when she went to school. She and her siblings came home and taught their mother the new language. She received a solid education and proudly graduated from Belmont High in the early 40’s. She loved to read and did well in school. She was college material but times were different and that opportunity was not available to her. Even though she loved to read and she especially loved poetry, she said that if she had gone to college she would’ve been a science major.
     After high school she worked for a short time at Hollywood Wholesale – an electrical company. She commuted from her home via the Red Cars – LA’s early public transportation system. She often bemoaned their demise saying that they worked perfectly. They were clean, on time, inexpensive, and efficient. When she was young, my mom had a pet duck and, believe it or not, this duck would walk with her to the corner where she caught the Red Car in the morning and it would be waiting for her in the afternoon when she returned. She loved that duck! Unfortunately, the duck disappeared around Easter one year and my mom sadly realized that someone was enjoying duck for their holiday meal. She didn’t blame them. Those were just the times.
     

     My mother’s life changed dramatically when she enlisted in the Women’s Army Corps. Though my grandmother was dismayed at her decision, my mother realized it would afford her an opportunity to advance herself. She went to Georgia for basic training and loved being a “WAC.” To her, the uniform, the three meals a day, and the specialized instruction she received were all a dream come true. She loved the camaraderie and even maintained contact with some of these friends  throughout her life. Though short in stature, she had fun being on a basketball team and was actually a pretty good shot. 
     Her affinity for science came in handy when she was trained as a medical stenographer, assigned to taking dictation in shorthand, during autopsies. Though none of us kids could imagine such an assignment she had the resolve to do this and do it well. 

      One of her other assignments was to write the letters home to wives, mothers, and sweethearts that were dictated to her by wounded soldiers recuperating in the hospital where she worked. Sometimes they would say, “you write it, you know what to say, you know what they want to hear.” I love the thought of her easing the heartache and pain of war times in this special, quiet way.
Now comes the good part! My mom was talked into attending a USO Dance while stationed in San Francisco. My father, Robert Stephens, nicknamed Steve in the Navy, attended as well. They were both shy but at one point he got her attention by nudging her foot under the table. Thus began a romance that included long distance letters and cross country trips, culminating in their marriage in his home state of Maine before a justice of the peace on November 10, 1949. 

     My parents were from two sides of this nation, two very different cultures, and it wasn’t easy for them but they forged a new life in post-war Los Angeles. It was an upbeat, optimistic time and they were part of the generation who had us baby boomers. They were close to my mother’s family and, as her siblings married and my dad’s family migrated west, our early years were full of family gatherings. We didn’t need a reason to get together – just that it was a sunny Sunday afternoon was enough to prompt a picnic in the park. My mom was in her element – at home, cooking, sewing, having babies. She didn’t even learn to drive until she was in her 30’s. And only one car – a station wagon, of course – met our needs.


     In 1966 my parents saw the neighborhood changing and knew it was time to move. Every weekend for months we drove all over the valley, Glendale, etc. looking for just the right place. My mother was never afraid to give her opinion so this process probably took a lot longer than my father anticipated. They finally settled in the Monterey Hills of South Pasadena. As was customary for my parents they began painting and weeding and sprucing up this new home. Though my mom knew this was a necessary move and a wise choice, she cried because she missed living across the street from her mother who was now a freeway drive away. But, the family reunions continued and the big yard and safe schools gave us a comfortable life in So. Pas. Before long my mom was asked to help supervise during the lunch hour at our elementary school, Monterey Hills, and so she became a “noon aide.” Later, our neighbors, the Swans, invited her to work for them at their family store – Swan Stationers. This is where her world opened up and many people remember her helping them at the store. It was the day where you could go and buy one pencil or one eraser or one report cover for 25 cents! With children at the elementary school, the jr. high, and the high school she became acquainted with many families. My mom quit this job in the mid seventies to have more time with her sister, Marti, as she was dying of cancer. Awhile later she was again “asked” to begin her next job. They needed more tellers at Bank of America, again right in So. Pasadena, and so she began yet another career. She loved counting money and she was proud of always balancing to the penny, even on busy Fridays! She eventually helped as a vault teller assisting local merchants with their business accounts and she also worked in new accounts – opening a bank account for my husband a few months before he and I met. She “retired” from this job when her grandson, Taylor, was born. She stayed home to care for him so my sister could return to work and the next year her day care center grew to include Sue’s twins, Camille and Nicole. Once again she was in her element! My dad marveled at how she acted like a young mother all over again – having plenty of energy for her young charges and so intuitively anticipating their needs.
     Next came the season where our children’s activities pretty much dictated my parents’ social life. They faithfully attended piano recitals, baseball games, school plays, church programs, basketball games, track meets, and jazz concerts. The involved parents became the devoted grandparents.
      About ten years ago my mother, who was never sick, became ill and spent nearly two months in the hospital. We almost lost her several times. I’m still amazed at how she battled back from that experience to live a whole decade more! In her later years dementia, memory loss, and aphasia limited her activities. She was so frustrated when we couldn’t understand her! She gradually settled into a more subdued routine but she never stopped enjoying the company of her family.

*******************************

These are the words I spoke:

Rebecca Monroy Stephens
My dear sweet Mom.  She was an earth mother before the term was invented. My mother wasn’t what you would call a deep thinker; she operated more from an intuitive level. Yet, she knew what she knew. If it promoted love, health or happiness, it was good. She knew, for example, that one should avoid too much sugar in your diet. She didn’t need to read double blind scientific research.  She just knew.  When we were growing up, candy and soda was not stocked at our house, or at least doled out in rare and small quantities.  I used to envy other kids whose moms would let them indulge in all manners of sugary treats, but in retrospect, I am sure we are healthier for it.  She just knew.  Plus she always had some funny theories about why things were the way they were, based upon some Mexican folklore. I found it a little embarrassing when I was young, and absolutely endearing when I was older.


     When I look back, I am amazed with the unconditional love that she showed for nearly everyone she knew.  My friends were always welcomed and always fed, with some of her excellent cooking.



       She loved babies. Oh how she loved babies.  When Carmen came along, she was so happy, being her first grandchild. I recall her and my father arriving at our house, and I reached out to give her a hug, and she walked right by me and directly to Carmen.  I had become dispensable at that point, I guess….


        She was tough.  She was a fighter.  Her illness about 10 years ago would have done in most people, but she fought and survived.  As my father would say, “She’s got that Indian blood in her”, referring to her native American roots in Mexico.


        She came from such poor beginnings; she was naturally frugal, but not stingy.  There is a very important difference.  She gave of herself with such generosity. She was patient and kind.

       A great cook, shared her love through food. Our kitchen was always stocked with plenty of food and her home made dishes. She would always make our favorite dish on our birthdays.
       I emailed an old girlfriend from high school who I thought would like to know that Becky had passed, and she called me and regaled me for nearly ½ hour with memories about my mom, how they would laugh together and how they remained friends long after we had broken up! 
        It was hard watching her mind slowly slip away; almost agonizing at times.  But somehow her essence remained, and if you kissed her on the cheek, she would return the kiss, and if you told her you loved her, she would say the same, as best she could. 
      She was our queen, in a way. Her caregivers, Nuria, Mildred and Rosa, were her handmaidens, and certainly have earned themselves a special place in heaven for the excellent, loving and gentle care they gave.  We give you our heartfelt thanks. 
       My sisters who oversaw her care did a fantastic job, selflessly working together to see that our Mom had what was needed and that she was taken care of; shuttling her to doctor’s appointments, overseeing the caregivers, and just being present for her.  I am sure our father would be proud.  And I have to mention Sue’s husband Ray, (Ray-Ray) who has been a steady, kind and infinitely helpful presence this whole time.   Thank you Ray, son-in-laws don’t come much better than you.



 





My daughter Carmen and son Myles with their Grandmother Becky.












    More than anything, my Mother’s passing represents the end of an era.  The house on Via del Rey was a place of many happy memories.  Suddenly my mind is awash with so many memories of friends being fed, of barbeques in the back yard, of school projects getting done, thanksgivings, Christmases, Easters, birthdays, and more.  We all knew this day would come, but that knowledge doesn’t make it any easier.  She died a proud Indian woman, in her own home, surrounded by loved ones.  We should all be so lucky.


      I wrote a silly poem for her 80th birthday a few years back, and I would like to share it with you now.



Mamacita


Long, long ago
In a galaxy far, far away
(Better known as the 1920’s in L.A.)
Was born a little girl, one of four
Nothing less, nothing more
Who knew what life had in store?
She went to school and confession
And survived the great depression
And then she wanted a little more
So she joined the Women’s Army Corps
And a little after World War II
She met a man who loved her true
And in the town of Lewiston, Maine
Mrs. Stephens she became
Soon baby Shelley sat on her knee
Then along came Stephanie
1955 – make some room
Along I came at the height of
    the post-war baby boom
And soon after my creation
We lived in a house above a gas station
While Dad pumped gas and changed the oil
In this house she would toil
Kids crawling all over the place
She kept us fed and a smile on our face
Soon more room we did want
So we moved to a street called Rosemont
The location just couldn’t be beat
Because our Nana lived across the street
With Nana in the kitchen her and Maria sat
Mixing the masa and chewing the fat
Around the holidays we were surrounded by cousins
While those three produced tamales by the dozen
Life was good, it was true,
But then along came Sarah and Sue

With all those daughters- inner city life can unnerve ya
So we made our escape out to suburbia
In a move out of harms way
We settled down on Via del Rey
At first this move brought lots of grief
Wailing and crying and gnashing of teeth
Dad hung in there like a good man
But sometimes he must have wondered:
Why did I marry this crazy Mexican?
But soon the tempest would all pass
And life was all right in old So. Pas
From that nest, the fledglings would flee
And so expanded our family tree.
One wedding, then another
(When I needed a best man, I couldn’t ask my brother!)
Grandchilden, both girls and boys
Seemed to be her greatest joy
Through this all she was a strong moral force
And with Dad kept this family on a pretty good course
She taught us things we know are true
From Shelley right on down to Sue
Like trust in guidance from above
And not to try to outsmart love
She’ll tell you what you need to know
Plus a little folk wisdom from Mexico
And now after 80 trips around the sun
You’re still here laughing and having fun
So it should be no surprise if now and then
We brag about our very own octogenarian
I’ve said enough, it’s time to rest
But I’ve just gotta say,
Mamacita, you’re the Best!


                                        -Bruce Stephens 
                                                5/5/04









Wednesday, October 17, 2012

OCTOBER SURPRISE

     The autumn is perhaps my favorite time of year.  The weather has been warm and clear, the water also, and the swells have been coming with some regularity, and I have been able to take advantage.  After a good surf session, all is right in the world. 
     This morning, via email, I was sent a pic snapped at Stone Steps in Leucadia. The taker thought it was my friend Jim Cravens.  When he saw that it was in fact me, he sent it along with a sweet little poem.  Not the most graceful of surfing moments, but a moment nonetheless.  I seem to be channeling a little of the Kook. I hope you don't mind me sharing...


                                     Swami Goes Left

Bruce has cancer.
It can kill you
sad and defeated
giving up giving in.
But Stone Steps beach is right down there
beside the Pacific Ocean.
It's not going anywhere.
Bruce is at Stone Steps
going left backhand.
You have to plush hard
on your back foot to turn.
You have to be alive
to do it, and Bruce can.                                               -James Cravens 10/2012