Fear and Recovery

Fear and recovery

Reflections on surviving a Brain Tumor

He stood there, tall and thin with wire glasses that looked dark against his pale skin. He was the "best" neurosurgeon in the area and in his white doctor's coat, he exuded confidence. He had a MRI scan in his hands and he looked down, as if studying what he had already study many times, for the first time. I did not see a neurosurgeon, nor even a doctor, rather I saw a judge and in his coat was not white nor a coat, it was a dark robe. In his hands was the verdict he was prepared to hand down, for some infraction I did not commit.

He looked down at the scan, looked up, and spoke; "It is a tumor, it is against your brain stem and it has to come out." I stood stunned as if I had just been sentenced to the executioner's guillotine. He must have seen the blood drain from my face for he looked down at the picture in his hand again and looked up; "Yes, it has to come out. The sooner the better. I am away next week, but we will schedule for the following week. I have to be here after the operation."

Fear, deep, gripping fear rose up inside of me and all I could do was nod my head, yes. Was there some one outside waiting for me? I could not remember.

The doctor interrupted my train of thought and said; "I need to get one more MRI, just to make sure I get all of the...". He pronounced some word that was gibberish to me, I assumed it was the name for the type of tumor and he continued; "The doctor who did the MRI thinks it is...". Again, a meaningless, unpronounceable word, which sounded exactly like the first world, but he continued; "but I think he is wrong."

Then I asked him about the headaches, the ones that brought me to his office in the first place.

Again my mind retreated, thinking of those headaches that had been happening in a haphazard manner for many years. They always seemed to be related to some sinus issue and they always seemed to dissipate after a course of antibiotics. The last series occurred when I was been over my girlfriend of some three months house. She wanted us to fix dinner together and enjoy an evening and so we prepared Ceviche together and after cleaning up, sat on the couch and were preparing to kiss. I do not know if we our lips ever touched for I was slammed with the twisting ache above my left eye in the temple.

She asked repeatedly what was wrong, calling my name; "My Joseph" she would say repeatedly, but I could not talk, the pain was too great. Slowly, as the pain subsided, she took my hand and began gently kissing my forehead when a second wave of agony swept through my temple. I think I cried out and I think I heard her call my name again. Slowly it passed. I could not tell until the intense, withering pain had passed, but she was shaken with her typical calm facial expression, gone, replaced with a twisted grimace, which I interpreted as concern. She kept her distance, as if she was the cause of these attacks, but kept telling me I needed to see a doctor right away. I was insisting that it was nothing more than a sinus problem, but promised to make an appointment.

That appointment was with my primary doctor, someone who I trusted and respected. We could talk on a technical level and he accepted my observations when diagnosing me. I had told him, that sinus thing is happening again, but he did not give me the normal, "Yes, this is your sinuses again", rather he was concerned, ordering a cat scan the same day. My doctor and the radiologist reviewing the CAT scan saw something and immediately referred me to the neurosurgeon, who was still talking as my mind raced through this progression of memories. It was that MRI scheduled for the next day after briefly looking at the CAT scan, he was referencing.

I returned to listening and the neurosurgeon continued, explaining; "The tumor is small, but is completely blocking the fourth ventricle to your brain and is beginning to block the third and fifth as well." I thought; "what the hell is a ventricle in the brain?" I had heard of ventricles in the heart, but not the brain, but these were thoughts, I did not speak out my questions. He continued; "While there are no nerves where you where getting the headaches and there is nothing to cause them at that spot, the restrictions in those ventricles by the...". Again that damn word referencing the tumor, that I could not fathom, was used. "Probably caused an effect that was referenced to that area in your temple", he continued. I had no more questions and he had no more information to give me except to tell me the operation would be scheduled after he came back from vacation.

He ushered me to the door and asked the nurse to get all the information they would need to schedule the operation at the hospital. My "self" was hunkered down now some where deep inside of me. Like a turtle retreating into its shell, I was hiding from myself.

I gave the information mechanically to the nurse and headed home.

I do not remember the time of day the appointment was, was it morning? Or was it afternoon? Did I return to work or head home? Was it on a Friday? Or did I go to work the next day? I know I went to work before the operation, for when I spoke to my boss and my best friend, I asked them not to tell anyone else what was happening. I fully expected to die, but felt nothing.

I do not know when I spoke to the people who I had come up to this part of the world some thirty years previously.

We had come up pursuing a Spiritual life, a calling with our roots in an Episcopal church in Houston, Texas. The church of the Redeemer was considered a "renewed, charismatic" church, with the core of the people attending living in Christian community, a form of extended family. We lived with the same commitment to each other. I grew up an only child, without any blood brothers or sisters, not did I have any nearby cousins. Now this group of compassionate people became my brothers and sisters, my family.

We moved together to the northeast, after another Episcopal church called, seeking help. This did not work out and we started visiting other churches from other denominations. After a few years, we found ourselves working again through the Episcopal Church in one of the poorer areas Stamford. Here at this 19th century building, we lived, and served, and laughed, and cried together, sharing everything as the Community at St Luke's chapel in the south end of Stamford.

At the end of seven years, we left that ministry, but we continued to share our lives together and work with the less fortunate.

I think I spoke with Marie first. Marie was my counselor and the wife of our pastor and had a heart that was as big as the moon. She listened and then asked how I was doing. When my response was a tepid "okay." She exploded.

We had been through something like this many years before, not with me, but with some one else who was part of us when we were at St Luke's chapel. Penny had been part of us, working and living within the community when she was diagnosed with leukemia. She under went the various treatments of the time and the doctors said her prognosis was good. Penny would always tell everyone she was okay and then she died, suddenly and without a real cause. The doctors told us there was no reason, except that she had given up.

Marie was fearful I was doing the same.

We talked, we prayed, but I could not come out of what ever was holding on to me.

Marie heard of a "psychic fair" that would happen over the weekend and asked if I wanted to go. I numbly replied sure, why not. It was not what I believed in, it was not what she believed in, but I had shut down so much, Marie was desperate and I did not care. This was a "new age" kind of gathering, with crystals, incense, and what not, held in a posh hotel with a group of people selling their spiritual abilities. I was not uncomfortable, for I felt nothing, except some deep, growing blackness. I chose a lady, who professed a belief in God and this was the first time she had been with this group. There were candles and cards and I explained the upcoming situation, again with no emotion. As she prepared with cards and other things, she looked at me strangely and told me I was blocking her. I resisted, not wanting to share that blackness I felt. She continued and persisted until I finally blurted out those things so deeply buried within my heart. I was afraid of dying. All the emotions that I held back came rushing forth, for I had named my fear. While the physic reassured me I was not going to die, I barely responded knowing I had allowed myself to face and express what was inside. This was important.

I had a bit less than two weeks to prepare myself and there was a lot to do.

Our pastor, Franklin, was not in town at the time, but immediately thought of my mother, who was not living near me.

I did not want to tell my mother anything, but Franklin thought of a plan, that I needed to execute, to get my mom up from where she lived and then I would tell her.

The plan would give me something to do, instead of waiting for the darkness I feared. My mom was in her eighties, but could still travel well. She had moved back to the town she grew up in after my dad passed and was close to relatives she enjoyed as a child. I contacted one to help me bring her to Stamford. This cousin of my mom concocted some story of a trip she needed to take and asked if my mom would come along. My mother never refused an opportunity to travel, especially to see me and immediately accepted the offer. My mom's cousin flew with her to the nearby airport, handed my mom to me and flew immediately back to her own home, her work done. This left me to do the hard explaining of all that was to transpire.

The operation would occur in a few days and I spent that time being with my mom and all those who were closest to me.

The day came and on admission, I had to sign a paper to release the doctor of any consequences of the operation, including death. There was my fear, in black and white, while I was not over my fear of death, I had made my mind up that this operation was going to happen no matter what I had to face. I could not imagine...

They administered the anesthesia, having me count backwards from some number, that I do not remember, then things became strange for I "awoke", for I have no other name for it and the doctors were still performing the operation. I did not see in the normal sense and then there was the somewhat exasperated and frantic voice of the neurosurgeon; "He's not breathing people!"

Then I was in a different place, a place without time, a place of peace beyond all my understanding of peace. There was no pain and I felt safe, like I had never experienced. It felt that I was in this place forever, but I returned.

I awoke, with pain and panic, for there was something in my throat and I felt it was choking me. I pulled a long tube, a tube providing oxygen to my lungs, out of my mouth and began to cough to clear my lungs. A doctor began talking to me as if I was able to make clear, logical decisions She told me not to cough. I just had surgery and it would be bad for me, she said.

I continued to cough for my addled brain could not respond to this doctor's request, and then I was out again. This time there was only the darkness of sleep.

Then there were bright lights, the recovery room with my mom and my family around me. My sight was confused and I could not tell what I was seeing, but I felt love and peace from them. My girlfriend was not there. I slipped back into a more normal sleep. When I woke again, it was dark with strange lights around, and I heard two doctors arguing with each other over something one of them had done with a patient, I slept again. Nothing was clear to me. Nurses and doctors poke and prodded me with needles. They gave me pills and I choked. The burning in my throat was unbearable and it was hard to tell anyone, anything for I was fairly delirious and very little made sense.

The pain and confusion made me long for that peaceful place that I found myself during the operation. Many have told me there are many possible reasons for these experiences, chemicals created by the body, the mind creating a safe place for itself, but no one really know sand I found solace in my Spiritual perception. I believed, true or not, that this was heaven. Over the years since, I have met many people who have had similar experiences, with the same feelings and I accept it in a Spiritual concept, but I had returned to the pain.

I remembered the neurosurgeon's words before the operation, trying to prepare me for what was to come. He said there would be nausea, I experienced none. He said that I might have double vision for a short time; seven years later, it is one thing I still deal with. He said I would be out of the hospital in a few days and back to work in a few weeks. I was in the hospital for almost two months and did not return to work for 9 months and then only part time. The neurosurgeon came to visit, informing me the operation had been a success, he got the entire tumor, that the biopsy proved his diagnosis was correct and then literally patted himself on the back and said I should have nothing to worry about for the future.

His glib manner was nauseas to me. I no longer trusted him.

My primary doctor was there often and within a week (or was it two), he and the neurosurgeon had me transferred to the rehabilitation section of the hospital. My doctor felt it would be safer for me to recover in a rehab section. My room was private, for I had acquired MRSA, possibly during the operation.

What ever the operation did to me, it was severe; I had trouble sitting up, so forget about standing. At this time, I could not walk and my vision was at best, strange. Two images distinct that would not come together. My brain could not make much sense of any thing. The nurses eventually put a patch on one eye, switching it with the other eye every day. I was considered a high risk of falling, so someone was to be with me any time I needed to get up. I had no privacy, not for the shower, not for the bathroom. I had been a modest person, but I did not care now.

I struggled with what was happening, I did not comprehend it.

I had a decision to make; I could wallow in despair, which was a very easy path or I could decide to enter the struggle and do what ever it took to get better. I choose the latter path and so my long journey of recovery began.

Patterns began to occur; an early wake up for normal vital signs and blood draws, breakfast, then to physical therapy, helping me to learn to sit up, stand and walk. Lunch would be served, and then I would take a nap, for I was always tired. There was more physical therapy and then my girlfriend would bring my mom in the mid afternoon. Dinner was not pleasant, for I had trouble swallowing and my mom was always worried. My brothers and sisters would come daily after work and other visitors, neighbors and coworkers would visit occasionally. I slept early and then the pattern would repeat. It seemed that I did not have much time alone, yet what I did have, allowed me to think and analyze, I did not brood. I did not like what I was dealing with, but thought of two quotes. The first from The Buddha declaring; "in this world there is suffering." I saw and felt the truth in this, but needed more. There was much comfort in the second statement where Jesus tells his disciples "in this world there would be trouble". The next portion was most important, for then he said; "be of good cheer, for I have overcome the world." This reinforced my mind and heart and I set my mind to do whatever I could to recover.

I would think often of my experience during the operation, what others would call a near death experience. This brought me peace, but it took time for me to share, it was too precious to me.

While my vision and body felt broken, my mind was clearing and I felt everything differently.

While I felt I perceived things that could not be explained and I was certain I no longer afraid of death.

One day, as my family was visiting, I spoke out suddenly, telling them that my cat, of some 18 years, was dead. They all turned to each other, bemused, for the cat had died, but they had promised not to tell me so it would not distract me from healing. They admitted it to me, but I turned away from the heart pain it caused and continued with my recovery.

It was a daily decision to continue the struggle for recovery, but I was steadfast and did not waver. In the process, I felt I was learning many things, life lessons with patience being foremost. I did what ever the doctors, nurses and therapist asked, or at least attempted them.

Therapist came to help me with my speech and swallowing. Others worked on my balance, first to sit up, then to stand and then to walk. As I went through the routine with one particular therapist, I remember crying out that I felt that I had no center. She reassured me and started working to help me find that center.

The best part of the day is when people would visit and it was an ordeal for each one, because everyone had to "suit up" to visit me, putting on gowns, masks and gloves.

My mom was brought in the afternoon by my girlfriend and brought home by my family. My mom would stroke my swollen head, as only a mother could. I felt hideous in my appearance, like some alien creature out of a Star Trek TV show. My brain worked find though, remembering a scientific number I learned in school, but never used. To reduce the swelling, I was given steroids. This did not reduce the swelling, but did mess up my blood sugar, to the point I needed insulin to control it. I began to lose weight, which was a good thing, since I was overweight, but that ended decreasing my blood pressure significantly. I was on medication to control high blood pressure and my loss of weight sent the readings plummeting. I had to have my primary physician to get the nurses to reduce that med.

I had vivid dreams, most were beautiful and descriptive of things Spiritual and these encouraged me. I shared those dreams and now felt I could share my experience in the operating room.

There were dreams of lights; thin tendrils connected each of us. There was darkness trying to break those tendrils, but it could not. I embraced those who were my Spiritual family more closely in my heart and I invited my girlfriend to be part of that. My girlfriend stopped coming after that.

I was hurt, I did not know how deeply I was hurt until much later on, for I decided there was no time for emotional things, all my effort was toward recovery.

I made other arrangements for my mom to visit me.

Some years later, after my mom had passed, I saw my this lady again. The meeting was by chance and unexpected. She was cordial, but I was cold. As I walked away, I recognized I was holding on to the bitterness of that moment. I then sought to clear my heart and after doing that, hoped to encounter her once again, not to become boyfriend-girlfriend, but just to reconcile as two human beings. I did not want to hold that grudge. It was still more years before I ran into her again and I did not see her with the eyes of bitterness anymore. We reconciled as two people and promised to keep in touch, which we have.

The weeks in the hospital, turned into a month, I discovered that the hospital had laptop computers one could use, and I put a request in immediately. I had never used a laptop and I was surprised that I learned quickly, even only using one eye. I was even more surprised that I remembered all my convoluted passwords and other's birthdays. Most importantly, I reopened my blog and posted my recovery progress daily.

Typing was a chore, but I had decided this was a recovery exercise. I wrote in a manner that was not always straight forward, using many allegories, and metaphors, and similes. What I wrote enunciated both the struggle and the hope I had.

Slowly, I improved and was able to walk with mechanical assistance (a walker in the hospital and a cane after).

It was coming on two months being in the hospital. The swelling in the back of my head was still there, the double vision was still there and my swallowing problem was still there.

I wanted out and began to try to hide the swallowing issue, for I had been told that if that did not improve, I could not go home.

I had two clear MRSA tests. The hospital wanted a third, but I wanted out, so my doctors released me and after almost two months I was finally home.

There was therapy at home, helping me to regain my balance and to walk better. The therapist at the hospital gave me a simple wooden cane to use and it kept me from falling many times. I still use it.

There was still the issue of the swollen head and the neurosurgeon proposed implanting a shunt to help remove the excess fluid. I had heard of those devices and agreed to it just before Halloween. It was day surgery and immediately removed the excess fluid. I had hoped it would improve the double vision, it did not. I began to prepare for a somewhat normal life and felt it was time for my mom to go home. I could only see easy going from here. She was old, and as much as she wanted to help me, I felt it was I who needed to help her. She insisted that she stay for my birthday, a bit over a week away and then she left.

In my blog, I began writing about headaches, fortunately, I do not remember this. I "blogged" less, but always wrote about the headaches. I cannot recall much of this, for while the excess fluid around my head was gone, the shunt was still working, draining more cerebral spinal fluid. I was unaware of this, but slowly my ability to think was becoming severely reduced. The strange scientific number that I used as a touchstone to prove my mind was still working, not only could I not remember, but could not remember why it was important. I was beginning to lose my ability to perform even the simple task of making my bed after a nights sleep. My housemates were always helping me. I do not know how I functioned at all, but I think I was operating on my heart, not my mental capacity. It was during this time, I took a long walk by myself to buy a gift card for an upcoming birthday. On the return trip, I collapsed on the pavement in front of a gas station.

There are strange pieces of memory, but nothing complete. I do not remember falling, but was told I just folded up onto the sidewalk. I remember a woman's scream, the flashing lights of a fire rescue truck and a paramedic's gentle hands lifting me onto a gurney for the trip to the hospital.

This time in the hospital was full of partial memories, nurses cleaning me, my primary doctor visiting me, a neurologist I had known when helping someone else years ago. I am told there were many tests, but remember none of them.

My family and the friends who visited were horrified. My speech was slurred, my manner slow as someone who had severe brain damage. It took numerous tests before the neurosurgeon came and from a MRI, saw that my brain was concave from too little cerebral spinal fluid. He shut of the shunt and I awoke, cognoscente of my surroundings again.

I was shaken by the entire event, for I have no other word to describe it. I had lost the last thing that I relied on, bringing me to the realization that our entire existence on this earth is very, very fragile. _____________stopped

I lost more than just my ability to reason, now I found my memory was highly affected by this last incident, yet my attitude improved.

I wrote in my blog:

After months of struggle, where I have called the various things I have been going through any thing from a siege to things best left unprinted on a page and wondering if it will ever end, I have decided to call it my adventure. The reason is something the surgeon said to me as he was discharging me from the hospital. "We both are learning a lot from this one." Now I love knowledge, but I like learning new things as well. And any one who is willing to learn when situations do not turn out the way everyone else in creation expects them to, is a person I want on my side. And boy have I learned a lot, from how other people deal with their own disabilities, to the things I thought were my strong points, and how quickly they could be removed.

I lost any respect, any confidence I had still had for the neurosurgeon, for after I had woken from the simple procedure, he said, "I guess we both have a lot to learn from this."

My family, all the members of our community, were shaken by all of this, but none more so than Marie, who asked me never to go out alone again. I agreed. While my family was shaken by this, I was confused, for I had no idea of what had occurred and more so, the missing memories, which amounted to several years before the operation, were simply gone and I was now confused about times and dates. I had trouble comprehending all of this, for it was not a simple, linear erasure of time. Earlier memories seemed sharper, but were not reliable.

I could not remember my passwords, the ones I remembered so well after the operation. People would come up to me and begin talking to me and I did not know who they were. This caused some of them much distress, for it was if they were never in my life.

All of this confusion caused me to beg the question, "why", a lot. This was not a woe is me nor "why did this happen to me", rather it was me trying to make sense of everything and how could I make the best of it.

I struggled with each issue, memory, swallowing, coughing, balance, vision and then there was pain. The pain was not acute, but rather a constant, dull pain that would not leave.

This meant I had to find new doctors or each issue.

To make sense of my memory issues. I went to the neurologist I remembered from the hospital and her test did not reveal any new problems, but ordered MRIs with each visit.

None of this helped me understand what I was experiencing.

For my vision and double vision, I went to a head trauma/vision specialist in another city. She recognized there was hope, for most people lose sight in one of their eyes in similar situations. She was encouraged that this had not happened and exchanged my "pirates" patch for temporary plastic "Fresnel" inserts for regular glasses to bring the two images I was seeing, together. They were temporary, for she believed my vision would improve. The Fresnel inserts brought the images together, which gave me tremendous relief, but what I saw was a bit cloudy.

For the swallowing and coughing issues I went to a gastroenterologist who performed an endoscopy revealing a significant scar and that the esophagus muscle was not working. I had to learn when to eat and what to eat and over these seven years, slowly, it improved a small amount.

There were eye and balance exercises, and physical therapy, but I still fell, a lot.

The emotional component of this was intense, I would be angry with myself when I could not do things I used to do easily.

I would try to place things on tables and miss the table. I would walk into doors and doorframes, things on the floor and just anything near the path I was taking. I complained to the neurosurgeon in one of the follow-up visits and he asked me why I was unhappy; many people who had the same problem had not survived the operation. I had survived, so what was I complaining about.

I sought help from a therapist I respected, who told me I was dealing with loss, as if someone close had passed. There was a normal process to go through and she showed me where I was in the process. This helped and I began to have some peace.

With my cognitive processes of thought and reason somewhat restored, I sought and received clearance to go back to work and with much trepidation I started part-time.

I found that all the routine, simple things I used to do so easily, were now difficult.

I had scoffed at the "vocational" rehab the hospital had tried to give me and the difficulty I was having, proved me correct.

My mind worked best in the early morning and was cloudy and confused by afternoon.

I adjusted my schedule.

I remembered the technical procedures, which surprised me, but one could say that after performing the same job for over 30 years, it was habit.

I was not able to work a full day for over a year and a half and that happened only after my diplopia had stabilized and I was given regular "prism" glasses. Even with the help of the clear prism glasses, it took all my strength to perform my job and a few years later, when I had the age to retire, I did so.

The constant exhaustion brought me to a place of despondency for I felt useless. On a trip to the area where my pastor now lived, he heard me say, "I can't", often, called out my lethargy and challenged me to try. This awoke a fire inside and brought me out of the dark place that I had been.

I would love to say that everything continued without mishap, until I fully recovered, but this is an adventure and adventures are full of ups and downs, missteps, mishaps and misdirection and my adventure of recovery is not an exception.

A cloud of fear lingers still around my thoughts, a fear of going to that place of shadow where my mind was of no use, but never more do I have a fear of death.

As I wobble on my feet, like an old man, when I stumble and fall; or not fall, or when my eyes become strained and the glasses no longer correct my vision and all I see is double, my heart becomes troubled and I waver on the path that is my adventure. It is at these times, and there are many, those closest to me, those of my community who are my family, help me back onto my feet to continue.

Yet the memory that was lost is still gone and I observe other cognitive issues, which cause distress to those closest to me. Testing by my neurologist have shown no cause and a final visit to the neurosurgeon led him to tell me he had no answers for me.

My life has changed, whether I accept it or not and I found new avenues of expression after leaving the job that meant so much to me.

My road to recovery continues, for it is not finished.

There is not an end, but something new each day, encompassing the rest of my life.