Not Today, Satan, Not Today!

Through all of my physical and soul-wrenching agony, I am determined to keep up my energy: Not today, Satan, not today!

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Although GBS is still going strong in my hands, feet and right arm, the time has finally arrived for my prostate cancer to be taken care of with radiation therapy, 45 sessions in all lasting over a period of 9 weeks.

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If all is successful, I will then no longer have to take the plethora of drugs and vitamins to keep the cancer cells at bay while preventing osteoporosis. Plus there will be the additional attraction that with the return of my testosterone, which formerly kept the cancer cells growing, my love life with Nancy will return full blast!

During this period I have been instructed to keep my physical strength up in order to avoid the usual weakness and sleepiness associated with radiation therapy. To that point, my caregivers Olga, Sandy and Rosalva take me wherever I need to go, whether it be to the gym, out in the mountains hiking, to the beach, to my physical and psychotherapy sessions, or just plain walking through the art galleries of Los Angeles. I often wonder if I am wearing them all out, especially at the gym were they take take cardio kickboxing and Yoga classes with me.

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At El Matador,  my favorite beach, with my caregiver Olga. Note the gait belt around my waist which Olga uses to keep me from falling

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Very hot on the trail in the Santa Monica Mountains, I reach for a swig of water

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Posing with my hot kickboxing instructor, Lupe, at Golds Gym

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My caregiver, Sandy, at El Matador Beach. After a grueling cardio kickboxing class with Lupe, Sandy and I headed to the beach to recover!

In any case, I feel gifted to have all of the above folks and technology available to me to help in warding off GBS and cancer while keeping my body and soul intact.

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Interlude

Due to the fact that I have been making continual progress in my recovery from Guillain-Barré Syndrome, I have been given the green light by my neurologist to begin treatment for prostate cancer. Although my cancer is classified as ‘low risk’, the extensive history of cancer in the Sicilian side of my family has made radiation treatment the best option. I was actually planning to start the preparations for treatment in January, which is when I came down with Guillain-Barré Syndrome.

Not only my doctors, but Nancy, my caregivers, and my physical therapists are all seeing good progress in my recovery. My hand strength has been increasing each week and walking has been come less labored and awkward for me. I have been hiking most weeks and am starting to do some of the more difficult trails, with aid for balance from my hiking poles and whomever is with me that day holding on to my gait belt.

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I can get around quite well on the keyboard where Bach’s 2-Part Inventions keep me busy, but on the recorder my fingers still can’t completely cover the holes. I dare not to pick up the oboe until I gain proficiency first on the recorder since its fingering is quite similar to the oboe’s and I don’t have to deal with reeds.

I get out quite often with my caregivers during the week, and with Nancy on the weekends. So far, my trips have included visits to the Santa Barbara Mission, the Getty Museum, the Huntington Library, The Page Museum, and LACMA. Last weekend Nancy and I went to Long Beach to see the Aquarium of the Pacific and the Queen Mary. The engine room, a real guy place, was a highlight that trip for me.

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Activities with Nancy, which were on hold during the three months I spent in the hospital, are starting to reappear. Most important one among these is our evenings on the couch making-out and watching TV.

During our hiatus, Nancy’s only photographs were the dozens she took of me for this blog, using her iPhone 6S. Now she has returned to the world of art entering three photos into the Annual Ojai Arts Center Photography show for which she won two Honorable Mentions.

The radiologist will be entering new territory as my treatment for prostate cancer gets underway, because it is unknown how my body, which is still recovering from Guillain-Barré Syndrome, will react. But it is important to start now to reduce the long-term side-effects of the medication I am taking to stop the production of testosterone in order to starve the cancer cells. The loss of testosterone not only effects sexual functioning, but also causes loss of bone density and muscle mass. Last week, a highly-detailed CAT scan was made of my pelvic area and from this, a 3-D model will be created for the technicians and radiologist refine a program for my treatment. It will be a few weeks before my 45-day/5-day a week regiment gets underway. Unfortunately, the nerves near the prostate are also affected meaning that the radiation will need to cover a bit larger area than just the prostate.

The most prominent side-effect of the radiation is fatigue. The active schedule I have set for myself (day-excursions, yoga, hiking) along with the support from my caregivers, will be essential for me in order to work through the final phase of my return to good health.

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Living with GBS

Since leaving Oso House, I have learned to refine my ability to walk and use my hands. Therefore in this post, I will give a general idea of what I now face in my daily living.

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There are three areas that effect everything that I do: my hands which remain asleep and weak, my feet which remain asleep and affect my balance, and my mind which remains intact but is subject to periods of doubt and depression.

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Because my hands are still weak, the ability to spread my fingers is greatly restricted. Although the oboe still remains out of reach, practicing the keyboard is part of my daily routine. The 15 Bach 2-Part Inventions are the works that I am studying at present. I am currently building a number of historical model railroad cars from the Civil War period. These two activities are helping me focus on improving my fine motor skills and giving me great pleasure.

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As to my feet, I take every opportunity to walk, either on pavement or in the local hiking trails and about 2 weeks after coming home, I decided to no longer use the walker. I also go to the gym once a week to work out and take yoga. Yoga has been very good to strengthen both body and mind. Thanks to my caregiver Olga, I am able to visit many of the local sights and museums, filling my day with fresh air and camaraderie.

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My mind is extraordinarily sensitive to any kind of negativity. I am thankful that my wife, caregivers, therapists, and friends go out of their way to be positive. One of the things that keeps me busy is returning to doing my household chores. My two caregivers have been extremely helpful in this regard, but on the weekends I have to take control.

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In the midst of all of this, I am fighting prostate cancer and my doctors are in the process of making a decision as to when to go forward with radiation therapy. When this occurs, I will be having sessions 5-days a week over a 9-week period. Once the cancer cells are completely killed, I will eventually be able to stop taking the the medications that inhibit the production of testosterone and which keep the cancer-cells at bay. The radiation will kill all of the cells in the prostate, cancerous and regular, but the normal cells will regenerate, something cancer cells cannot do. After these therapies are completed, my sexual functioning will return to normal. I suspect that the periods of depression, that I now must deal with, are related to the hormonal imbalance from the medications.

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During the period when I was in the hospital I missed Nancy’s birthday and Valentines Day. Seeking to make this up to her, I bought her a tiny camera that she had been talking about forever – the Sony RX100 IV. This has brightened up her day. Previous to this post, all the images were taken with her iPhone as she did not have the energy to deal with the batteries, cards, and lenses of her trusted street-photography equipment. Starting with this post, you will see many images from the Sony RX100 which neatly fits in her purse without any real extra effort.

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What No One Ever Knew

I call this section What No One Ever Knew because it’s only been as of late that I’ve been able to verbalize my innermost thoughts. So let me start at the very beginning of what Nancy has referred to as my GBS Adventure.

It all started a few days into January just after I had taken kickboxing at Gold’s Gym. I came home from class and, ascending the stairs, I suddenly felt my legs give way under me. Although I couldn’t walk at all, I forced myself to crawl up the steps into the living room.

That night really weird things begin to happen to me. Coming out of the shower I suddenly felt a tingling in my toes and in the tips of my fingers. I had not been in bed more than a few hours when a strong pain developed in my right shoulder, and it was only a matter of time before Nancy took me down to the ER at Los Robles Hospital; but nothing could be found so I was sent home with pain medication.  The next morning the pain became so intense that we had to go back again, and this time I had to be put into a wheelchair in order to get to a room in the ER. Once again nothing could be discovered but I was now kept at the hospital for observation.

And it was during that time that five of my doctors met to decide what was wrong with me. For several days many tests were run including a CAT scan, an MRI, and bone scan; and it was only when I had a spinal tap that the correct information that was needed came through: I had Giullain–Barré Syndrome.

During the days when my doctors were in the process of coming to this decision I became very close to death. I think that it was probably on the third day that I nearly died because my bowels had become impacted. But by good fortune my gastroenterologist, Dr. Gilbert Simoni, was able to correct that problem and actually save my life. But the fact remains that I felt that since I was already 75 years old, the time had come for me to die anyway. I believed that I had already put in enough time on earth: I done all the things I wanted to do and I thought that my days had come to a close. I didn’t want to push it: already I had a pacemaker, cancer of the prostate, and osteoporosis and I simply didn’t really want to live anymore.

Transferring to the UCLA medical center in Santa Monica was what kept me going because once there,  my blood was cleaned for five days in a row, and that gave me a chance to return to using my limbs, which up to that point where totally paralyzed. Little by little each day I gained a bit more action in my legs and arms. My right arm though, has not yet returned to complete mobility.

All during this time of anguish Nancy appeared every day without fail to look after me, often sitting for hours in traffic on the PCH. In time Nancy took it upon herself to try to figure out where I should go next for physical therapy as no one seemed to know anything about it.

It took Nancy a full two weeks to discover Care Meridian and it’s myriad of homes for folks like me located out in Chatsworth. And it was at the Oso House that I began to come back to life. At first, I was not more than just a sack of loose bones, but the folks there worked with me day after day to bring me around.

It was at this time that my life began to change because I got a great of amount of attention. In the evening I had two sets of people who took care of me, and during the day there were many more including my occupational therapist, my physical therapist and the occasional visitor along with Nancy. So concerned were they for my life, that my brother, Ernie, and my dear friend, Marc Mostovoy, phoned me practically every day.

As my health improved, my unique personality became well known throughout Oso House and I became very friendly with a number of people there. Since most of the  members of the staff there were bi-lingual (Spanish/English) I took that opportunity to study Spanish and went by the moniker,  Chico. During the last couple weeks I was there, one of the nurses whom I hardly knew began to take an interest in helping me learn to walk. Little did I realize but that she is afflicted herself, with the incurable Narcissistic Personality Disorder.

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Returning home I began to get into an entirely new routine with two caregivers and Nancy doing their best to keep me going. Twice a week I go in for my therapy, one of my caregivers driving me there and staying throughout the sessions. On Wednesday of every week my caregiver, Rosalva, takes me to the gym with her where I work out for an hour and then take yoga. The latter class has turned out to be a very important factor in helping me to walk, create better balance, and just basically have a better outlook on my life.

Still I miss all of the attention that I was getting up at Oso house. It really was quite constant with so many people looking after me and, just enjoying being with me. Among the people whom I got to know very well is a woman I refer to as Stella, meaning Star. Stella was in much worse shape than me because she had broken her neck. When I last saw Stella, she was just learning to walk but not making the kind of progress that I’ve been so fortunate to make. So overall I consider myself extraordinarily lucky and I do hope Stella, too, will soon have a better time of it.

Now that I’m back home I have tried to go back to doing some of the things that I did before I became ill. Just today I began working on models again with my resistant fingers. Unfortunately, the same fingers do not permit me to play the oboe, so this is been the cause of great frustration for me. Also certain weakness overcomes me after my therapy sessions, and therefore I must take a Siesta every day following these intense sessions.

The project that I began back in December regarding the oboist, Marcel Tabuteau, with my colleague Marc Mostovoy has started up again and this is great fun as it involves using the Finale music writing program to add the musical excerpts to a wonderful story that Marc unfolds about the great oboist. In fact when I was at Oso House the story of Tabuteau was one which brought great joy to several of my caregivers especially Marie, an African, who taught me how to pronounce Tabuteau’s name correctly in French.

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My dear caregiver Olga has been very flexible and helping me to adjust to my home life. She comes over right after the night shift at Oso House, unbelievable as that may seem, to help me get the wash done and take me to my two therapy sessions at the Los Robles Rehab Center. In fact, one day Olga and I went on a hike up in the Santa Monica Mountains and, I must say, after laying in a bed for so long and being a mere patient, it was great fun feeling like I was a regular human being again.

As of late though I have felt a certain melancholy at not being able to do much more with my friends and colleagues. At times I have awakened in the night and felt that maybe I had it right during the time when I was in the hospital in very early stages of my malady, when I thought that perhaps 75 years was long enough to live. Fortunately, as the days wore on in the hospital my focus was directed towards my beloved Nancy and being able to get home to her. Night after night I prayed to God that I would make it.

And there she is now: every night without fail Nancy lies in my arms as we fall asleep.

Being Home and Scenes Around Town

From Nancy: It has been difficult for Chick and me to keep up with regular posts onto the blog. Perhaps this is because we are busier, or perhaps this is because life is now returning to “normal”. Even so, it feels so different. Actually, it feels better as it includes more friends, more love, and more sharing.

On January 12th, my life took a left turn as I dropped everything to manage and advocate for the healthcare that Chick has been receiving over these past 3 1/2 months. In addition, often Chick himself was extremely demanding on my time and energy. In the beginning he was going through so much change, slowly loosing his nervous system and heading into a deepening paralysis accompanied by tremendous neuropain. During this time, Chick required almost 24-hour attention to ease his pain with massage and touch. In the next phase, after plasmapheresis, as he began to regain motion, my attention turned to daily encouragement and logging his changes from day to day. This was a great driving force for the blog. During the recovery phase at Care Meridian (now affectionally referred to us as Casa Oso or Oso House), my attention focused on helping Chick enjoy life’s small pleasures and making him feel like he was once again back in the real world. We now would go out to lunch or dinner and go shopping at the hardware store. There was not one day that we did not leave Oso House even if it was just for some frozen yogurt. We were able to reconnect with our close friends and even have some dinners at our favorite places near home.

Through all of this, my life became all about the actions and deeds that I did that day. It was no longer about physical accomplishments or something material. And, although I was pretty freaked out myself, especially at the beginning, it felt great to just do things with no physical artifact left behind. The satisfaction of completion and accomplishment was greater when the result meant that Chick slept better, worried less, or could be more optimistic. And it wasn’t all directed at Chick, I would hear over and over that the whole of Oso House knew when I was there, talking to the other residents and joking with the staff. 

At one point, Chick and I had a deep discussion about what he would do next during his slow GBS recovery. I articulated that life is not about what you leave behind or even how you are remembered, life is about your actions and deeds. Focus on your actions and deeds and the rewards will follow.

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And I was rewarded aplenty for my hard work. When this all began, I sat on my living room couch one night and looked around and I saw a house that I had little connection to. I, after all, left for work at 7:30 am and came home about 12 hours later, sometimes stopping at the gym. I would make dinner, eat, relax a bit while Chick cleaned up and go to sleep just to start it all over again. I had a well-worn, but tiny, path that I would tread through the house. So I began a plan to rejuvenate the house and rebuild my connection. The first thing that had to be fixed was the kitchen. Our 35-year old kitchen was  pathetic and inefficient, a full makeover was overdue. Second, was the equally old bookcases and desk that took up a great portion of our living room. We love to use our living room as a library, so that transformation was next. I also needed a better way to display my photography than hanging them helter-skelter were ever the next nail went into the wall – this led to a full paint job and new picture-hanging system. Finally, I needed to take care of the practical matters of making the bathrooms safe for Chick as he recovers.

The repairs are now complete and the house is in better order and more livable than it has been in years. As a result, Chick and I spend more time talking during meals and sharing the days experiences with each other rather than watching TV or sitting in front of our computers. Each of these projects was driven only to provide a better living environment for Chick and me when he returned home, the accolades from my friends on “how beautiful the new kitchen looks” (and perhaps now has a better resale value) are just a side-effects.

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As I look back through my life, I now realize that I have always had this expression at my core. I have never been one for laying down achievement goals – as is so much in vogue in the world of over-achiever entrepreneurs and ladder climbers. Instead, I have always looked around for something interesting and just went in that direction. I never really know, nor particularly plan, what end-result my next turn will bring or how far I will go. This approach has caused me some consternation in the corporate world in which I live each year when goal-setting season arrives. Instead, I leverage my inner instinct to commit myself to each job and do what is right. I now understand this better than before.

Over the past year I have taken to reading haiku poetry by the great Japanese masters Basho, Buson on and Issa. Here is a haiku-like poem from me:

Traumatic life events
come by surprise
Making us better
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Chick with my Dad

Hiking

All photos in this post by Olga

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This week, I went for a rather extensive hike in the Santa Monica mountains with Olga, my caregiver. The weather was glorious and the flora was extraordinarily beautiful due to all the rains that we have been having. It is clear that I am getting stronger every day. Some of the hills I had to climb were really difficult, but Olga was there all the way, holding onto my gait belt. I feel extremely fortunate to have a caregiver who is so flexible.

Olga also accompanies me to my PT and OT sessions and is very encouraging, even when things don’t go too well. I am having particular trouble with my hands, the fingers of which are bound so tightly together I still an unable to play the oboe, although I can play the piano. Both my PT and OT people, Mignon and Elsa, are great fun and make learning, what used to be second nature to me, much easier to deal with.

Nancy is back at work, so I count on Olga and my good friend Rosalva to get me through my days. Rosalva takes me to the gym on Wednesday during which time I work out and then take yoga. Rosalva also does our housekeeping and Olga assists with all of my chores which Nancy used to rely exclusively upon me to take care of while she is at work: making the bed, washing the clothes, making my lunch, putting away the dishes, and more.

9-Days In

From Nancy: I see it has been 9 days since Chick and I last updated the blog. These past 9-days have flown by with hardly a chance to sit or reflect. There have been good times, scary times, and a lot of emotional times.

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From my vantage point, Chick continues to become stronger each day, but he still insists on comparing himself only to “before” which diminishes any sense of accomplishment and makes me very sad. In addition, as his hands and feet heal, they become more and more painful. Last night it was his hands and the night before, he could barely touch his feet to anything with out wincing. But sleep and pain meds do seem to take the edge off and each day begins anew with fresh energy. I too get tired and cranky and ache for some time for myself and when I’m cranky and Chick is cranky at the same time tempers and emotions can flare.

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Since he has been home, not only have we completed many projects in the house, we are also making our way slowly back into playing with friends and doing the chores. We have completed cleaning up from the painting and have unpacked the kitchen and are living in it quite nicely. It came out beautifully and I love all the new appliances – especially the stove. Today the book cases are being installed and the picture hanging system has arrived. Our day will be filled with getting our library back in order and hanging pictures. The Hagadas for the Lehrer 2016 Seder are printed and we look forward to entertaining our friends for the 10th year, each year reading 1/5th of the story of the Exodus in play fashion. There is always a great deal of anticipation as our guests learn who will be God, who will be Moses, and who will be Pharaoh. 

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From Chick: I would like to add to what Nancy has said above the fact that the slow recuperation of my hands has been a cause for great anxiety. Practicing the 15 Bach Inventions has given some relief as my fingers get stronger every day. Still, they are not able to separate from themselves enough to finger the Oboe, so rather than take the complex instrument out of the case every day, in order to work on strengthening the width, I have decided to go with an Alto Recorder which I just ordered on Amazon.

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In addition, there is the problem that I and others have faced, of leaving the cosy womb of the Oso House in Chatsworth where all of our desires are met by a simple press of a button. At home, a good part of these requests are now being met by Nancy, but soon she will return to work and some of these tasks will be taken over by care providers during the day. Since leaving the Oso House, I have learned to accomplish the following tasks: walking unaided around the house, climbing the multiple staircases, showering in my new shower chair, putting dishes into the dishwasher, getting the clothes washed and dried (but I still can’t fold them or hang them up), and working on being able to make my own lunch. Still it is a long haul which can take up to two years, for folks with classic cases like mine, to recover. So the question remains, that although I will have help in undertaking the duties that heretofore where part of my daily life (paying the bills, doing the wash, making my meals, dressing, etc…) the three most important aspects of my life are still missing at the present: practicing the oboe, building models, and attending cardio kickboxing classes at the gym. Weekly sessions with the physical therapist and occupational therapist at Los Robles Rehabilitation Center are taking their place in the meantime, but there is no substitute for the real things.

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A fourth section missing from my life is caused by the fact that I have cancer. The drugs that I take to keep the cancer at bay while I recover from GBS, render me both impotent and with osteoporosis. The combination of these four items missing from my life are causing a crisis in self-identification.

Nonetheless, now that I am finally home from the Oso House, I have reached my goal which is to be with Nancy every day, especially every night. So that alone has made it all worth it. I’m enjoying all the new amenities but my favorite is my toilet-seat bidet which makes “toilet hygiene” a breeze. Still, there is the shadow of the Oso House hanging over me, calling to me to return to an easier life which is very difficult to resist. I suspect it will be a very long time before I will ever have the courage to go back just to visit with the friends among the staff which I made there. I certainly would not want to return there in the state that I am now in. I look well from the outside, but I am certainly am not, as anyone who has seen me walk unaided can quickly grasp.

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