decadron

Brian Wins!

Posted on Updated on

1974 began with me clunk-stepping my way around the house. It was slow going but at least I could get about. Using the walls and furniture for support was no longer an option. I had to keep my knees locked when standing or walking. If they buckled even slightly down I went. I had to climb furniture to get up again. If I fell in a hallway with no furniture around I was stuck. Mom suggested putting a horn on the walker so I could honk for help. Dad fixed a bicycle horn to the walker. At the same time he attached a blue plastic bicycle basket to the top crossbar. This simple basket afforded me a lot of independence. I could do things like get something from the cupboard, drop it in the basket and take it to the kitchen table. It may not seem like much to an able-bodied person but after months of having to depend on other people to do everything for me except breathe I welcomed the freedom.

Dad pushed me around in a wheelchair when we went outside. All street curbs were square. If we were going down a sidewalk and we wanted to cross the street, we had to wheel down the sidewalk of the adjoining street to find a driveway to take us to street level, cross the street, go up an adjacent driveway to the sidewalk, go back up the street and continue down the sidewalk that we were on originally.

Dad and I wanted to see a hockey game at Fort William Gardens in January. Dad phoned the Gardens to find out how to get access for someone in a wheelchair. He was told that he had to wheel me in the back way where they herded the circus elephants, go under the stands and stay at ice level. When I heard this I said, “No.” Why couldn’t I go in the front doors like everyone else? Why shouldn’t I?

In February the doctors started another attempt to wean me off decadron. They lowered the dose as before but this time they replaced the decadron with prednisone. This regimen worked for me and by midsummer I was off all medication.

Prednisone: A synthetic corticosteroid medication used to reduce swelling and inflammation.

As the dose of the medications decreased my legs got stronger, my eye sight started to clear, my co-ordination, speech and swallowing improved, and I was expanding my chest again. My clunk-stepping was faster and I leaned less on the walker. I started to lift my walker and take two or three steps. I felt a wonderful sense of achievement because I knew in my head and heart I would walk again.

At long last it was time to put the walker aside and take a step without support. I was nervous. I remember standing beside the fridge in the kitchen. I held the walker beside me with my right hand and firmly grasped the counter with my left. Then I let go of the counter and walker. With my arms spread wide I stepped forward into Mom’s waiting arms. With daily practice that one step became two then three then four. I can’t adequately describe in words my sense of joy, freedom and accomplishment in taking that one first step.

I have always loved the rich character and ornate architecture of 19th and early 20th century buildings. But I am dismayed at how they were designed with only able-bodied people in mind. These buildings have been retrofitted to be wheelchair accessible. However they can never be as accessible for persons with mobility problems as modern buildings that are designed to accommodate people in wheelchairs. Even though I can walk, because of my mobility problems due to my poor balance, retrofitted buildings are harder for me to use. I should have started Grade 9 at Hillcrest High School in September of 1973. Because of my health I couldn’t go.

I should have started Grade 9 at Hillcrest High School in September of 1973. Because of my health I couldn’t go. My parents arranged with the local Board of Education for me to receive my high school education through the home schooling program set by the Ministry of Education in Toronto. I guess you could say my high school was 909 Yonge St. in Toronto. When asked I say, “Hillcrest,” to avoid explanation.

Academically I received a thorough high school education. What I missed out on was the social part of going to high school. When I attended LU I listened to my classmates talk about the parties and outings they had with their high school friends. I missed all of that.

The Ministry mailed the texts and materials to me. At home I wrote out the assignments onto a note pad of lined paper with a section at the top of each page for name, date, course and assignment number. I tore the pages off the pad, put them in the envelope provided and return them to the Ministry for marking.

At the time I started the high school correspondence courses my writing was reasonably legible although my hand was slow. Given my blurred eyesight my writing stayed on the lines of the page for the most part. But because of my poor vision I couldn’t read the books or instructions. Mom began reading the books to me. For three years we sat across from each other at the dining room table. She read course instructions, assignment questions, text books, short stories, novels and plays as I made notes. I best remember the dystopian world of Fahrenheit 451 where a government tries to suppress the knowledge of its people through burning books. It was scary. Never had I imagined such a society could exist. I was inspired as I listened to The Miracle Worker, a play about the fortitude of a young woman, Anne Sullivan, who taught Helen Keller, a deaf/blind girl, to read and write. Helen Keller became a personal hero as I learned about her resolve to conquer her disabilities just as I was trying to overcome mine. The correspondence courses didn’t start in September and finish in June. They went all year round which allowed me to work at my own pace.

On the other hand math was Dad’s domain. He read the math texts and course assignments to me. However it’s hard to read out an equation so the listener can understand. So Dad and I sat beside each other. I made notes as he read. When I needed to I held my magnifying glass over the equation or formula to read it for myself.

After the first year of study my eye sight began to clear, my hand was faster, my writing was more legible and it stayed on the lines more. Even the teacher who had been marking my assignments at the Ministry of Education in Toronto noticed the improvement.

Christmas of 1974 was a happier time than the last. There was no doubt in anyone’s mind I would live. I was getting steadily stronger, speaking more clearly, no longer incontinent and able to do more things for myself. The year 1975 would be a time I could look to the future once more. Brian wins!

Advertisements

My Game – Third Period – My Fate Is Decided

Posted on Updated on

Third Period. My fate is decided. My brain tumour went away. It never came back. But the drastic treatment – the radiation therapy – came at a price.

Whenever I recall the whole ordeal with my brain tumour I first think of 9:00 AM, Friday, November 3, 1972. It became an anniversary date. But my struggle to survive didn’t end with those three months in Toronto. It continued in Thunder Bay. The year of hope, 1973, was the fateful year that decided whether I would live past 14 years old.

In 1972, the radiation therapy could only be targeted at an area. Along with killing my tumour it caused a lot of collateral damage. As the doctors predicted a delayed reaction started six weeks after the treatments ended. Up until the radiation therapy reaction began my co-ordination, balance, swallowing and speech were improving – and my smile was getting broader.

When the radiation therapy reaction set in, my brain tissue in the irradiated area swelled blocking the normal flow of cerebrospinal fluid (CSF) that caused the intracranial pressure (ICP) to increase which would kill me if left untreated. The doctors were ready for this. When the reaction began they put me on decadron medication to keep the swelling down.

Cerebrospinal fluid (CSF): The fluid circulating in and around the brain.

Intracranial pressure (ICP): The pressure of the CSF.

Decadron (dexamethasone): A steroid medication used to counteract swelling and allergic reactions.

As the reaction progressed my face became completely paralysed. The 7th cranial nerve controlling the muscles in my face died leaving me with no facial movement at all. My speech became more slurred. My eyes turned in giving me double vision again. I had more difficulty swallowing. I had to chew each mouthful of food thoroughly and wash it down with milk. My co-ordination and balance got steadily poorer. I had so much trouble handling utensils at the dinner table that Mom spoon fed me. I started to use a cane when I was outside. In the house I used the walls and furniture to help me get about.

Trying to communicate wore me down. Since my lips were paralysed I couldn’t press them together to pronounce letters like “b”, “m” and “p” properly. In time I learned to pronounce all letters fairly well with my tongue. But my tongue was getting slower. I was frustrated day after day as I lost my ability to communicate through speech. Not being able to make facial expressions like raise my eye brows, frown or smile added to my communication problem. Now not only was my smile gone but my mechanical speech as well. Mom and Catharine were the first two people to catch on to my new way of speaking. I called it my accent. Dad and my friends took a bit longer. Dad seemed more disheartened than me at not being able to understand what I said. It didn’t take him long to catch on.

I felt trapped. My world was caving in on me. Many of my days were filled with desperation and helplessness as I succumbed to my declining health. I was heartbroken having to let people do more and more of the things for me that I used to do for myself. I could at least have bowel movements again by September but somebody, usually Mom, had to clean me up. I had the humiliation of becoming incontinent and was wetting the bed at night. There I was 14 years old and wetting the bed. I was so embarrassed. In the back of my mind was the fear of what my uncertain future may bring.

Only one activity lifted my spirits. Dad took me out for a drive every evening after supper. It gave Mom a breather after taking care of me all day. We often stopped at Chippewa Park. Arm-in-arm Dad helped me slowly walk around as much as I could which wasn’t very far. We often stopped at a Dairy Queen on the way back and I’d get a Dilly Bar, my favourite. I looked forward to our drives every evening. Dad and I shared our thoughts about a current event or Dad told me a story about his youth in England. It took my mind off my desperate situation and kept a glimmer of hope in me that one day I would overcome this.

When we returned home I told Mom about my adventure. We watched TV or I just said good night to her and make my way to my room. Dad helped me get ready for bed. I sat in the chair beside my bed and Dad, often assisted by Catharine, gave me my tooth brush and held a bowl for me to spit in. When that was done I crawled into bed. Then Dad sat in the chair beside my bed. As I lay tucked tight with the room light off and just the light streaming in from the hallway Dad read to me. Dad liked reading to me as much as I did listening. It was soothing to both of us.

Dad chose several wonderful books. Farley Mowat became my favourite author as I listened to many of his works. My favourite was the warm and funny story of Mutt in The Dog Who Wouldn’t Be. By the time Dad had finished the book I felt as close to Mutt as if he was my dog. Dad introduced me to Stephen Leacock’s colourful wit and humour in Sunshine Sketches of a Little Town. He read The Mapmaker about David Thompson, who surveyed much of North America in the 1800s and who kept many of the maps he drew in Fort William right where we lived.

I can’t recall when Dad stopped reading to me every night. When I started to feel better and more confident with life he tapered off. In my mind I can still see and hear Dad reading to me as he sat by my bedside illuminated only by the light from the doorway.

My parents were distraught by my failing condition. The doctors said it was likely the result of neurological damage caused by the radiation therapy. My health would stop deteriorating when the radiation therapy reaction subsided. If my brain tumour was the reason they were at a loss for options as to how else they could treat it.

Was the radiation therapy the cause of my declining health? If my brain tumour was still growing could the doctors find another way to deal with it? Would my brain tumour prove to be untreatable? Only time could provide the answer. For the time being my only option was to stay the course of the long months of decadron treatment. As it turned out, time showed the radiation therapy to be the cause.

Decadron irritated my stomach which made me feel hungry all the time. With a good appetite and decreasing mobility I quickly put on weight. During the year I was on decadron I doubled my weight from 80 to 160 pounds. I have the stretch marks and flat feet to prove it.

Decadron also promoted premature closure of the ends of my long bones. When the long bone ends close normally after the growth spurt in adolescence you stop growing taller. A doctor in Thunder Bay took angled X-rays of my leg. He told me I should have been 5’10” instead of 5’4”. It’s safe to assume I should have been at least as tall as Dad who was 5’9”. A few more inches would have been useful but it’s hard to miss what I never had.

A week after got back from the Toronto ordeal I went back to school excited to catch up with friends and finish Grade 8. A month after I returned to school the radiation therapy reaction set in. I could no longer physically attend school. I was upset. My friends came to see me at home but as my condition worsened they stopped coming. They couldn’t handle seeing my health decline. I couldn’t blame them because I would have done the same thing in their place. The school board arranged for supply teachers to drop off text books and assignments at the house in the morning on their way to work. This didn’t work out. So the school board found a teacher, Olga, who had retired to raise her family. She came twice a week to help me with her four year old son, Lornie. Lornie kept Mom entertained with his stories while Olga taught me my lesson. Between Olga’s visits I worked on the assignments she gave me. Olga made schooling both interesting and fun and with her guidance I finished Grade 8. In those few months Olga became more than my teacher. She is a good and valued friend that I stay in touch with to this day.

By September, 1973, it was time to get off decadron. It was not just a matter of stopping the medication. My body had become used to it. I was hooked. The doctors started the process to wean me off decadron by first lowering the dose gradually over the next few months. They started me on cortisone acetate along with the decadron.

Cortisone acetate (glucortizoid): An adrenocortical steroid medication used to reduce swelling and inflammation.

The plan was to take me off decadron altogether by getting the cortisone acetate to take over keeping the swelling brain tissue in check. Then they would stop the cortisone acetate. The doctors examined me every two weeks for signs of ICP build up to see if things were going as planned. If this regimen didn’t work my brain tissue would swell, block the flow of CSF and make the ICP increase. They lowered the dose of decadron. If I said I felt all right they left me on the lower dose for two weeks. If I was still okay they decreased the dose some more.

I wanted to get off decadron. In my mind getting off it was the remedy for all of what was happening to me. I said I was fine when I really wasn’t. It didn’t hurt but my head just didn’t feel right. It was like everything was churning away inside.

“Soon I’ll be off decadron,” was all I thought about, “I can put up with my head until then.”

As they decreased the dose of decadron and simultaneously increased the cortisone acetate the worse my head was. But I wouldn’t give in. The cortisone acetate wasn’t keeping my brain tissue from swelling like the decadron had.

One evening in mid November Catharine and I were watching TV in the den. She noticed me becoming nauseous and ran to get Mom and Dad in the living room. When they got to me I was already throwing up. Mom being a nurse recognized the signs of intracranial pressure build up. My brain tissue had started to swell. They rushed Catharine down the street to the neighbours and me to Emergency at McKellar Hospital.

The doctor who had monitored me just a few days before examined me. He had no explanation. There was no sign of pressure build up those few days prior. My brain tissue suddenly swelled making the ICP spike. He admitted me, injected me with a big dose of decadron and hoped the medication would reduce the swelling to relieve the pressure. Dad went home to stay with Catharine and Mom stayed the night at the hospital. The big question now was – would I make it through the night?

The decadron did its job. This meant I was back on full doses of decadron and another attempt would have to be made to get me off it. The doctor quickly scheduled me for neurosurgery to have a CSF shunt implanted in my head to prevent this situation from happening again.

CSF shunt: A long flexible plastic 1/8 inch diameter tube inserted into a ventricle cavity in the brain that allows the CSF to flow even if its natural course is blocked. If the CSF flow is blocked the CSF accumulates in the reservoir of the shunt. The resulting increase in ICP opens a pressure release valve in the reservoir which allows the CSF to drain away into the abdomen to relieve the pressure.

On November 17, 1973, just over one year after my first neurosurgery, I was in the OR in McKellar Hospital. Surgery went smoothly. Again I hallucinated but not as much as before. I spent the next three weeks in the hospital. The shunt will be forever in my head. I no longer need it but it would be another surgery to take it out.

When I woke up the morning after being admitted to McKellar I couldn’t see clearly. Blinking and rubbing my eyes didn’t help. An eye surgeon was called to examine my eyes. The sudden ICP increase damaged the blood vessels in the backs of my eyes making them bleed which caused my vision to blur.  After examining me the eye surgeon expressed to my parents his concern that the damage could be permanent. Mom and Dad downplayed the news to me. They said that the eye doctor said it would take a while for my eyes to get better. I was disappointed by the news but I remained optimistic. It was yet another harsh blow in what had been a year of one heart break after another. Over the following year my eyes gradually healed.

One evening while I was in McKellar after neurosurgery a very thoughtful nurse named Laura from the neurosurgical ward gave me some large print books to read. She had gone to the library after work and picked out some books she thought I would like.

I made it home two weeks before Christmas. My time in that hospital bed left me unable to walk without a lot of help. We rented a walker from the Red Cross which I started using when I got home. It was a light aluminum frame that I lifted ahead of me with a clunk and stepped up to it. When it came time to trim the Christmas tree I had to sit in a chair and watch Mom, Dad and Catharine decorate it. With legs that wouldn’t support me, poor co-ordination, double vision and now blurred eye sight I was unable to help. Still I was home.

I did my Christmas shopping that year from a wheelchair with Dad pushing me around the malls. I quickly learned how hard it is to get around slushy parking lots and through narrow, closely-set double doors that many stores had in the 1970s. We celebrated Christmas as we did every year with all the cakes, goodies, roast turkey, and friends stopping by with their Season’s Greetings. I know they wondered if this Christmas would be my last.

On New Year’s Eve we raised a glass to toast 1974 with Johnny Carson on The Tonight Show as the ball dropped in New York’s Times Square. A new year had arrived and with it came renewed hope. Score!

My Game – Second Period – The Game Is Tied

Posted on Updated on

Second Period. The game is tied. A week and a half after I was sent back to the neurosurgical ward at Sick Kids I was transferred to Princess Margaret Hospital in Toronto to receive the radiation therapy treatments. I met more kids there all of whom had been diagnosed with one form of cancer or another. Even though I didn’t have cancer I would receive the same radiation therapy. Two of them were from Thunder Bay – a little four year old girl named Tina and a boy, John, who was a year younger than me. John and I quickly became friends.

Tina returned home with her mother a week after I got to Princess Margaret. Dad and Catharine had to go back to Thunder Bay at the same time and the four of them travelled together. Sadly Tina didn’t live to see Christmas.

John returned to Thunder Bay before I did only to be admitted to McKellar Hospital for more treatment. The doctors in Toronto felt they had done all they could for John. They sent him home for one final attempt to save him. John lost his life to cancer near Easter of 1973. When I found out I was shaken. I never knew the actual date he passed away but every Easter I think of John.

Although I appeared sicker than most of the kids in that hospital ward with my poor balance, unsteady motion walking and slurred speech, the one thing I had going for me was that I didn’t have cancer.

In preparation for radiation therapy an orderly brought me downstairs to have a plaster cast helmet made. The technician sat me on a chair and donned a tight, stretchy, rubber sort of shower cap on my head that covered all but my face. She covered the cap with strips of cloth soaked in Plaster of Paris. She said, “Sit there for 20 minutes while the plaster dries and don’t turn your head.” Staying still for 20 minutes was the hardest part.

When the plaster dried she picked up what looked like a carpet knife to halve the helmet. She started by running the point along the middle of the top of my head from my forehead to the crown and down the back. I gasped as I felt her run the knife along the top of the helmet. She made a second pass and finally a third. The two halves parted and I could breathe again. The shower cap came off and it was over.

I saw the helmet again a week later at my first treatment. The Chief Radiologist at Princess Margaret decided to treat my tumour by administering 5,250 rads of radiation over a course of 30 treatments from late November 1972 to early January 1973. Blast the hell out of it!

Rad: Radiation Absorbed Dose is the unit for measuring the amount of ionizing radiation delivered to the body.

An orderly walked me down to the radiology department for my first treatment. The radiologist sat me on a chair in the middle of a 10×10 foot room and clipped the helmet around my head. Each half sported a 1×2 inch hole cut out around my ear lobes. I looked up and saw what looked like an X-ray machine suspended from the ceiling on rails. She guided it over to me and connected one end to the opening in the right side of my helmet. Once again I had to sit still but for only 2½ minutes. After she went into her booth I heard the machine start up. I waited. Then I heard it shut off. She came back and repeated the procedure on my left side. This would be the drill for the first five treatments. “Piece of cake,” I thought when the first treatment was over. No pain, no hassle, no problem at all. This was going to be easy.

The second treatment went differently. The next day another orderly came to take me for treatment number two. We walked downstairs. I got my radiation therapy without incident and had almost made it back to my room when I suddenly felt violently nauseous. “I feel sick,” I blurted out and hurried to the toilet to throw up. It didn’t happen after every treatment, but sudden nausea happened a number of times during my radiation therapy. The rest of the treatments would alternate between my left side one day and right the next. Adding it up at five minutes apiece for the first five treatments and 2½ minutes each for the rest I logged 1½ hours sitting in that chair being bombarded.

On the whole I was handling the radiation therapy treatments well,. The doctors decided I could to have the bulk of my treatments as an outpatient. When Mom and Dad found out how long my radiation therapy would take they knew they couldn’t spend the next two months in a hotel in Toronto. They started to look for an alternative. One evening riding back to the hotel from Princess Margaret Mom asked the taxi driver if he knew of any places nearby. “There’s a new apartment hotel called the Town Inn at Church and Charles,” he said, “You can rent a small suite with a kitchenette by the week.” They checked it out and decided to take it. The suites were modest but affordable. I travelled from there each weekday for my treatments. Mom, Dad, Catharine and I spent Christmas and New Years there together with some friends from Toronto.

After my first few treatments a doctor informed that me that my hair would fall out in the area I was getting the radiation. I imagined myself going completely bald. How could face my friends with no hair? I didn’t like this at all but what could I do? After treatment number 15 my hair started to fall out. I wore a hair net at night. I could reach back to pluck the hairs out of my scalp without feeling a thing.

The skin became tender and crisp on my ears and especially on my ear lobes – like after a bad sun burn. They were cooking my ears but they had to pass the radiation through them to get at the tumour. My ears kept getting worse until the treatments finished. The skin healed over the next two weeks. I thought my hair would grow back but it never did.

Forty years later I still have a one inch wide band of baldness going across the back of my head from ear lobe to ear lobe. I keep it covered up by letting the hair above grow over the area. I’m careful to point this out every time I get a haircut with instructions to leave the hair longer there to keep that spot covered. Hair stylists are generally okay with this. Some have commented on it being an odd place to be bald.

“Yes, isn’t it?”

When I was in Princess Margaret Hospital I started to get headaches during the night. I walked out to the nurse’s station to tell them only to be given two aspirin and told to go back to sleep. One evening I discussed this with a nurse on duty. She realized I hadn’t had a bowel movement since the day before surgery and I was badly constipated. She ordered a Fleet enema for the next day. The enema cleared my rectum and the headaches stopped. Somehow during the month since I had neurosurgery nobody checked to see if I was having bowel movements. Since I didn’t feel the need to “go” I never thought about it. I had lost the ability to have a bowel movement. The surgery must have affected the nerves for that. This meant getting a lot of enemas to keep me “regular.” Most were administered by Mom. Four months after surgery my ability to have bowel movements was coming back – or at least the feeling to want to go. It was a lot of effort at first but by eight months after surgery, when I was 14, it was pretty much business as usual.

Dad had to work and Catharine had to go to school so just Mom and I stayed in Toronto at the Town Inn for the two months while I had the radiation therapy. Dad and Catharine visited a few times and our Toronto friends stopped by as well. Mom and I went for walks around the Town Inn. We got to know the area fairly well. Our walks often took us past Postal Station F. I remember the big grey squirrels scurrying about. They had to be at least three times the size of the small brown squirrels in Thunder Bay.

My last treatment was on January 6, 1973. In the two days until we caught a plane back to Thunder Bay we packed our things and said good-bye and thank you to our friends who had seen us through the last three months. As we got ready to leave the Town Inn for the airport I reached into the closet and pulled out my Team Canada autographed hockey stick. I grasped it firmly on the taxi ride to the airport, on the plane and on the drive home.

Joe, a family friend, picked us up at the airport in Thunder Bay to drive us to our home. Along the way I happily looked left and right to gaze at all the familiar buildings and streets. It seemed I hadn’t seen them for such a long time. As we turned a corner my heart jumped for joy when I first glimpsed the sight of our house.

“I’m home. I’m finally home.”

It was a sweet homecoming and a welcome chance to breathe a long sigh of relief. We had endured the three month ordeal in Toronto. As that ordeal ended another was soon to begin.