Thirty Years and Counting! (Anniversary Stories)

"Reflections in the glass of a window..."

Looking out over Merida, Mexico at Star Medica Hospital.

The Date today is May 3, 2016, Thirty years ago today I was preparing to leave UCLA Medical Center in Los Angeles California. For a lifetime of events that no one would believe possible and still alive to appreciate what has and may come. 

Looking out the window, as I will today in a few hours at 1:00pm from where? Yes a Hospital. Where? Star Medica Hospital, Merida, Yucatan, Mexico. It is far away from Los Angeles, California and UCLA Medical Center. You may be thinking "What are you doing there?"  Of all things I'm teaching. I've now got your attention. I will be teaching English to a doctor. He is a doctor of nephrology, in layman language he is a kidney doctor and he does kidney transplants.

Ironically, I was looking out a window more than likely at approximately the same hour thirty years ago. I was preparing mentally as well as physically for my departure from Santa Monica Airport via a twin propeller Cessna Airplane with four seats. 

Disconnected from my med pump and IV pole with wheels, which was connected to my Hickman Catheter exiting my chest, and had become an extension of my body. I felt liberation as I moved freely around my room on 10 West, next to the nurses station that I had occupied for thirty four days. I'm sure they were happy to discharge me the next day. I was responsible for some serious chaotic insanity with my ill sense of humor during my stay.

Daughter Dusty and I at The Phoenix Zoo (Pre BMT)

Exhausted and not knowing why? (CML Leukemia)

I began rolling up my poster (Elvira) from my window,

removing my Nerf Basketball Hoop from my door, 

disconnecting my stereo that rocked day and night. Packing my bags. Saying my goodbyes to all who were involved and remembering all that had taken place. It was now time to leave and start life all over again.

This is my story, lessons learned have not been forgotten nor those who participated in it. I recall everything even names come to me easily. I near the age many are afflicted with EOA That's Early Onset of Alzheimer's Disease, I refer to this as EOA.  EOA is a great excuse I use it for everything as I'm nearing fifty five years of age. I have procrastinated sharing these events except for those close to me. Now it is time to bare my soul. Hopefully giving insight, inspiration and drawing feelings out of you the reader making you laugh with tears running down your face. Hopefully I possess some type of skill to communicate what transpired taking you through part of my life as I remember and share. 

How Did I Get Here?

At age twenty two I began experiencing lower back pain (lumbar area) and night sweats. I had no understanding of what was going on inside me. You could find me playing basketball, softball and golf regularly. At work it was common to find me picking, shoveling, laying block, pouring and finishing concrete. I worked for a landscaping and irrigation contractor I enjoyed learning and practicing all the construction trades. Later in my life this would pay dividend, as I would become a licensed general contractor.

I have always led a very active lifestyle and still do. So I decided to fix my back problem with exercise I started running nightly after a full day of work. Occasionally my wife and daughter would accompany me by setting pace with a bicycle equipped with a baby seat. The symptoms gradually worsened as I dealt with pain that resembled Sciatica. The pain became so intense that I would take a hot bath and my wife would find me in tears crying at two in the morning. Now realizing this problem was starting to become a serious problem it was time to seek professional help.

Consulting my family physician and explaining my symptoms. First things first he had the radiologist take an x-ray showing my lumbar region of my spine. The results came back showing a hairline fracture to a lumbar vertebra. He gave me an anti-inflammatory and explained rest was needed.

After a couple of weeks of rest and feeling better I was right back at life. Still having a stabbing back pain that ran down my right leg to my heel, upon certain movement and it was intermittent. I returned to my family physician and he referred me to an orthopedic surgeon.

 Following my reference I met with the orthopedist who reviewed my x-rays. He said that I was experiencing the pain as my sciatic nerve was possibly being pinched or was being rubbed by calcium deposits formed by the fracture. He instructed me to strengthen my abdominal muscles, refilled my prescription for anti-inflammatory medication and sent me on my way.

Back to work I went, never one to stand back and watch. I was on a flatbed trailer off loading thirty foot tall date palms by crane and I was doing the rigging. My back pain brought me to my knees several times with stabbing sciatic pain.

I returned to the orthopedist, He suggested epidural blocks with cortisone in the caudal area which meant insertion of a long flexible needle under my coccyx (tailbone) and pushed up the spinal column into the lumbar area. Then they sent me to an orthopedic supply and had me fitted for a flexion jacket.

To put on the flexion jacket, I would lay the back plastic fitted portion that spanned my back lumbar area to my thoracic area on the floor first. Then I would lie down on the floor face up in a supine position on the back formed plastic piece.  Then I would place the frontal plastic over my abdominal area that spanned from my lower abdominal area to my diaphragm. Now I could tighten the straps and buckle them putting me into a pelvic tilt.

This still couldn’t stop my physical activity as I continued to work physically. I continued to receive caudal injections of cortisone for the next eight weeks from an anesthesiologist as an outpatient waiting for an hour lying flat on my back for a hour after an injection.

Eight weeks passed and with little to no relief and another consult with the orthopedist He explained to me that a fusion of the lumbar vertebra was necessary. He then went on to tell me that this would affect my range of motion for the rest of my life, and there was little alternative if I wanted to be pain free.

Decision time

Going under the surgical knife took a lot of contemplation as this would affect my physical activity the rest of my life. The pain was crippling and seriously would drive me to my knees in a fetal position. This became a no brainer pain or limited movement do to fusion of my lumbar vertebrae. So after a few days I agreed to surgery.

Admitted for surgery at St. Luke’s Hospital in Phoenix, Arizona a local hospital it was now time to seal my fate. I was assigned a room and told that I would have a CAT Scan and a Myelogram  the next day and surgery to follow the next day. Great problem solved.

Blood and more blood.

They did a routine blood draw as for all prior to surgery almost immediately after I was assigned to my room. I was served dinner, had family visitors. I mentally prepared for the next day CAT Scan and Myelography . To my surprise another phlebotomist came into my room as I was ready to go to sleep. She wanted another blood draw. I reciprocated and gave her my blood and after she left the room my thoughts began to run.

Trying to sleep became difficult as I tried to find reason for two blood draws. A thought came to me, what if I have a toxic blood disease. What could it be? Finally falling asleep with my red Sony Walkman playing James Taylor Music, I rested until the morning.

I awakened not by breakfast but by another phlebotomist who came to take another blood draw.  Now I know my dreams had become a nightmare. Processing thoughts as I sat on the balcony patio which was a part of my fourth floor room I ate my breakfast. Thinking of a possible diagnosis and putting all other thoughts aside such as CAT- Scan, Myelogram and surgery.

I had recently watched a movie featuring Burt Reynolds and Dom Deluise called “The End.” I thought no, it can’t be, maybe… I’ve got a toxic blood disease like Leukemia. I waited outside in the October Phoenix weather on my patio overlooking a poor neighborhood in a poverty stricken area of Phoenix surrounded by projects. Listening to my music with headphones, I broke into tears as I now have processed my life to its conclusion without being told from a physician what’s taking place as of yet. Minutes turned to hours, time passed slowly. Lunch was served and time kept dragging as I continued thinking to extremes. It was now time for dinner trays to be served and still nothing as I now have convinced myself that I have Leukemia and would eventually be told.

It was 4:00 pm and a much needed visit from my mother came about. I thought should I share my thoughts, and decided against it as I had not had a diagnosis. She brought me two Double Quarter Pounders with cheese and two supersized fries. Oh and two cans of Skoal Longcut Wintergreen smokeless tobacco. The epicure's’ delight started as we spoke about my day. When asking about my day and order of events. I told her that all went well. She went on asked about the CAT-Scan and Myelogram and how did they go. Stumbling and bumbling and trying to find an excuse. I said that my doctor had not come into see me yet and I didn’t know when they were scheduled. She replied so you have just sat all day? No they did some blood work and I quickly changed the subject to baseball as it was World Series time. Making more small talk about her job as school secretary and family, and avoiding sharing my thoughts about a toxic blood disease, she left to spend time with my father as he would be coming home from work. Later She had told me she knew that something catastrophic was brewing and did say a word at the time.

It was now approximately 5:30 pm.  Now entering my room as trays for dinner were served was my orthopedic surgeon. He had a long drawn puzzled face and said very little except that a specialist would be seeing me before night's end. He left as quickly as he entered. This certainly didn’t put my mind at ease. I now know I’m right. Something absolutely terrible is going on and no one will tell me.

My wife had just arrived as she finished her day's work and came to visit. It was now 6:30pm as I ate my dinner tray and made small talk. After about fifteen minutes she asked what had taken place during the day as tomorrow surgery is scheduled. As she spoke and not hearing a word she was saying, as I was preoccupied thinking of ways to say what I have concluded, without being told by the medical professionals treating me or in this case not. I smiled and said I think it's “The End.” I was referring to the movie. Hoping this would be a way of dealing with my intuitive thinking and not being absolutely sure. I’m sure she thought this was another Ed ploy for romantic attention as she laughed. Before she had a chance to speak another sentence, we were interrupted.

Entering my room was an older thin man in a lab coat. He introduced himself I’m Dr. Phillip Scheerer an hematologist and oncologist.” Her eyes light up as did mine. I thought holy shit I’m right, without saying a word. He started the conversation, ”I know that you have been sitting here all day with no activity toward treating your back problem and you have had blood drawn from you three times, and have had to wait for me to see you for hours.” Before he had a chance to give me any news, I calmly looked into the eyes of my wife and said, “I have leukemia.” Shock now filled the room as I asked him, “How long am I going to live.” He was utterly stunned pausing uncomfortably. He explained that although not sure, but possibly right I needed a bone marrow biopsy to confirm. To my surprise he did it on the spot giving me a local anesthetic and using a corkscrew aspirator as I lay on my side he burrowed into my hip and took a tissue sample. As he was doing the biopsy I was looking into my wife’s eyes as mine watered from the pain from this crude method called biopsy. I watched the tears run from her eyes down her face as our world was shattered. Conversation continued awkwardly as he told me that my white cell count was forty times the norm. He then told us that he would be in contact the next day as it was now 8:30pm and he exited.

Boom! My wife burst into tears and so did I. We wept for what seemed like an eternity until our tear ducts ran dry and still continued. I couldn’t find words to say and nor could she. We came to the realization of how serious this was and devastating to all of our goals dreams and now daily life. We readied to part as I sent my hello and love to my 20 month old daughter with her. She retired for home devastated as you could read it all over her face.

Wandering and Wondering;

It was now 11:00 pm, if I thought falling asleep the night before was difficult, this an impossibility as I moved about the room with hot feet throughout the night. If I had any back pain it was from the biopsy area, but truly I was numb and dumb. Reality was hitting like a Reggie Jackson’s bat to a baseball. A full night of pacing and roaming the hospital was about to begin. I put on my street clothes and attempted to move about incognito. I passed by the nurse’s station and with my street clothes on trying to pass by as a visitor and failed.  When asked where I was going I replied the morgue. This was the beginning of my morbid sense of sarcasm that I used to cope with my reality. The nurse replied with a laugh followed by smile as she had been attending to me since 7:00 pm and was aware of my new found death sentence. She was empathic and compassionate as all tending staff would become as they found out what had transpired since my arrival. Playing upon her sympathy I explained that I needed a break away to ponder and I would like to go to the cafeteria for a cup of coffee. She smiled and said, “You are dismissed”, and added, “You have forty five minutes.” Which would become five hours.

First place I wanted to find was the Nursery for all the new born babies. Off to look for the maternity floor. Using a directory located at the elevators. Sure enough I found it.  I stumbled upon the glass window and found a room full of newborn infants; I found myself smiling and recalling the birth of my daughter. This joyful memory was quickly replaced with the dreadful thought of my loss of a future with my daughter, family and friends. I continued my walk as if an escapee from a prison hoping not to be noticed as tears ran down my cheeks. I moved through the hospital looking at the directories to find what would interest me.

Being an extremist I went from life to death. Next stop the Oncology Floor, so creeping about emotionally crippled I began to seek my destiny, my future. It was now 2:00 am and absent without leave from my present floor Surgical I was now going to try to pass by the Oncology Nurses Station where I was greeted by what some refer to as an Amazonian Army Nurse asking what was doing!  I explained that I had just received a death sentence and would she be kind enough to placate my request of just walking the floor as I would soon be a future occupant! She was kind enough to empathy and carried on a conversation for an hour. Losing track of time and inspired I told her that I need to complete my mission and see the morgue. She expressed that I would more than likely not gain access as I’m not staff. She then bid me luck on my adventure and told her I would more than likely return to see her in the future. 

I returned to the elevator and found no listing upon the directory for my final quest."The Morgue."This meant wandering mindlessly through the maze of the hospital or asking someone. I ventured my way for a while, gave up as I knew the Grim Reaper was following my footsteps. Realizing my fate I quickly paced to my room on the Surgical Floor.

 I returned to my room at 4:15 am the next day and put on my hospital gown and laid back into the bed and began watching television. Now discovered by the night nurse who was assigned to me I was quickly lectured as I told the nurse’s station that I was headed to the cafeteria. She cut me some slack as she put my shoes on her feet and understood I was an emotional mess as my life had imploded eight hours earlier. Feeling absolutely at the bottom of sorrow in an emotional abyss, she offered heartfelt sympathy instead of chastising me for my earlier behavior. We chatted for 40 minutes as she exited with a, “Hang in there!” quote.

Sleeping was impossibility, as my thoughts were racing through my head. My mind processing end of life thoughts such as, “How long will I live?” I need to prepare myself for death. I need to prepare friends and family for my death. It just kept spiraling into such mundane sad thoughts of turmoil as I was greeted with a breakfast tray at 7:00 am.

Time was moving slowly as I felt imprisoned, now eating my bland scrambled eggs toast, oatmeal, and a banana with a milk chaser, still pondering my fate and hoping for a miss diagnosis. I tried to relax watching television, channel surfing I stumbled upon nothing of interest. Appearing into my room was my wife and in her arms was the medicine possible my daughter. This quickly changed my demeanor for the moment and put a smile on my war torn face. We were quickly interrupted by the phlebotomist as she drew more tubes of blood from my arm. Before we had a chance to talk entered the hematologist-oncologist. Our faces subdued, we are now facing reality again, but I certainly needed and appreciated the break with my grandiose smile and the stopping of mal thought.

Dr Scheerer with a solemn look delivered his thoughts and still waiting on testing results from the biopsy, began to explain his hypothesis without a lot of detail. He told us that a blast cell count would be necessary (this is when cancerous cells are counted to determine if you are in an acute or chronic situation) and that I would be released from the hospital in an hour or so and to contact his office for an appointment within the next 48 hours. 

Rejoicing about the release, yet sincerely baffled by what hence lay ahead. We didn’t address the situation as my wife and daughter stayed for my soon to be dismissal. My normal satirical comedic side of my personality exited with the exit of my Hematologist. There now was nothing to be said to make light of my dire situation. We were in waiting with no idea of what to do with the awkward situation and even what to say to each other at this point and time. Soon my attending nurse came in and gave me my release papers to sign. With a smile I signed for my release and was ushered into a wheelchair which was not needed but a necessity as it was hospital protocol due to insurance reasons. 

Driven through the maze of the hospital corridors by an orderly, flanked by my wife with daughter in her arms we made our way to the elevator in silence, and onto the parking lot. Upon getting out of the wheelchair and fighting back tears of a shattered world I began to feel the grip of my reality. The orderly bid us adieu and headed back to the maze of corridors. We made our way home in silence not knowing what lay ahead in a continued silence. Tears rolled down our cheeks and truly feeling sorrow.
  
Signed Sealed Delivered?

Is this what I ordered? Was this something deserved? Was this a gift from god? Am I supposed to make lemonade out lemons? 

Arriving at our apartment with faces looking like I had passed away, not knowing what to say, struggling with what to say, what to do, completely stunned by all that transpired. I felt like I was attending my own funeral. I to this day will never be able to understand what my wife felt like even being empathetic. Composing ourselves we began to address what lay ahead.

Stay tuned for much much more as I write and reflect on the past and give insight to my future.