How Cancer Saved my Life.
By Michael McGarr
2008
ALL RIGHTS RESERVED
No part of this book may be reproduced or transmitted in any form
or by any means, electronic or mechanical, including photocopying,
recording, or by any information storage and retrieval system,
without permission in writing from the publisher.
Published by Michael McGarr
Copyright © 2008 by Michael McGarr
February 2008
ISBN 978-0-9810105-0-2
Cover illustration & design by
www.VINCENTSALERA.com
This book is dedicated to my wife Anne and my two sons Tim and Matthew. Their love and support over the last twenty years gave me the strength to face each new day.
It is also written in memory of Elaine Franklin, Angela Pasto and Jerry Madden, three people of courage and faith whose lives will always be remembered.
M.M.
The Guy in the Glass.
When you get what you want in your struggle for self
And the world makes you king for a day,
Just go to the mirror and look at yourself,
See what that man has to say.
For it isn’t your father or mother or wife
Whose judgment upon you must pass.
The person whose verdict counts most in your life
Is the one staring back from the glass.
Some people might think you’re a straight-shooting chum
And call you a wonderful guy,
But the man in the glass says you’re only a bum
If you can’t look him straight in the eye.
He’s the fellow to please, never mind all the rest,
For he’s with you right to the end.
And you’ve passed your most dangerous, difficult test
If the guy in the glass is your friend.
You may fool the whole world down the pathway of years
And get pats on the back as you pass,
But your final reward will be heartaches and tears
If you’ve cheated the man in the glass.
Peter Dale Winbrow, Sr.
1934.
This poem, in many shapes and forms has been on our bathroom wall, at eye level right beside the throne, for more than fifteen years. I never really paid attention to it until Dr. G. had me take a good look at myself in the mirror when I was hospitalized a second time for alcohol related health problems. That was more than fifteen years ago and since then I read it on a daily basis. For years it was attributed to ‘Anonymous’, but I did a little research and came up with the name of the person believed to be the author. I don’t know what he was going through when he felt the need to write these words, but I thank him again and again for the strength I found through his words. M.M.
Chapter I
An introduction to the real world.
Nineteen years ago in the spring of 1988 I was diagnosed with cancer. After extensive surgery I was informed that I had stage IV Non-Hodgkin’s Lymphoma which was so severely metastasized and had caused so much damage that conventional treatments in place at that time were not considered anything but short term, life extending protocols. A year, perhaps, the doctor had said. I remember looking across at my wife as Dr. Rosenberg continued speaking; she had sunk so low in her seat that she looked like a little child sitting in an oversized armchair. She was devastated by the prognosis. Before he had finished his speech I knew that my cancer had become our cancer and it was threatening our history, our present and future. I needed to find the strength for the two of us. The fear left me and determination to fight took its place. Well, the fear didn’t exactly leave; I was able to control it and put it aside for now. I would not be overwhelmed by fear.
I had faced the unexpected, immediate prospect of death a couple of times before in my life; I was a passenger on a motorcycle that skidded on a wet expressway and I found myself lying in the outside lane of a three lane highway during rush hour. I somehow managed to scramble to safety. Another time after a fight in a pub where I tended bar, I had been shot at from a distance of about four feet with the bullet missing by inches. In both instances I emerged unscathed. Those were occasions when I realized, after the fact, that death could occur without warning and be immediate. There would be no time for regrets of any kind, nor time for fear.
When I was a youngster in grade seven my best friend Antonio Martinucci died. We had been in the same classes for six years and were always competing for the top spot in the class. Our parents had been encouraged to have us write the entrance exams to Loyola High School, the private Catholic boys’ school in Montreal. Of course, neither of our families could afford to send us there; a scholarship was the only ticket. With our parents’ permission, Brother Kosta, our teacher, kept us after school for several months to tutor us for the exams. It was early fall and we were to write the exams in December; he only had a short time to teach us what we had to know to be able to compete successfully with students from the more affluent areas of the city where schools naturally groomed their students for admission to private schools. We were well along by early October when Tony started missing sessions because he was too tired. By the beginning of November he was absent from school. His mother said his blood was too thin. I had been bringing work home for him to study when he was absent, but at the end of November his mother asked me to stop because Tony had to go into the hospital. My mother took me to visit him on December seventh but Tony slept all the time I was there. I hoped he would get better because we had to write the exams on December fourteenth. When we were leaving his father told me that Tony couldn’t write the exams, he was too sick. Tony died on December tenth and I went to my first funeral on December thirteenth. On December fourteenth I wrote the entrance exams to Loyola and got accepted, but I didn’t get a scholarship. I knew Tony was proud of me anyway. That was my first experience with cancer; Tony died of leukemia.
Until I myself was diagnosed with cancer that had been my only intimate experience with that or any other fatal disease. At that, I had to dredge my memory for details; I had not thought about Tony in years. It had been my experience that cancer only killed old people, that Tony had been that rare exception. Kids and young people only died accidentally. I had by no means been living a sheltered existence; I just had not been touched by cancer since I was a child. The word cancer was just not part of my usual vocabulary. While I was studying for my B.A. in psychology I took courses on palliative care and had to work in a hospital palliative care ward. They were all old people who were dying; even though I knew they existed, I never saw a children’s’ palliative care facility until I was forty years old.
Chapter II
The ‘c’ word.
Both my children, who are now adults, were excellent athletes in any sport they chose to play. I have always been a strong proponent of any kind of physical activity for children, starting as early as possible, for as long as possible, more exercise and physical activity and less TV and video gaming. Individual and team sports which require training, practice, repetition and self-discipline can give young people an early start in learning the basic skills necessary for later growth and development. Both Tim and Matthew were involved in football, hockey, soccer and baseball from the time they were three or four through their high school and CEGEP (Junior College) years. Matthew was also a distance runner, Tim a golfer. I had been an athlete and a player and coach most of my life and as soon as the kids could walk we played various sports together in the parks, in the backyard and on the street. As soon as they were old enough for league play they joined soccer and hockey teams and I became a coach. I coached them in both sports for several years until they went to Loyola and played on school teams. Then I went back to playing Old-Timer hockey and coaching on the Tyke level. This is the best program ever conceived to teach young kids to skate and enjoy the game of hockey. This is where my cancer experience actually began.
Tyke power skating is a program for boys and girls aged three to five. The instructors take these fully equipped little kids onto the ice, take away their hockey sticks and put them through various fun drills that will teach them to skate without depending on a stick for balance and agility. They learn to keep their feet moving all the time they are on the ice and to keep their heads up. Motion and vision are the keys to rapid acceleration and direction change. They learn to fall relaxed as skiers do and to then get up and in motion as quickly as possible. Then we give them back their sticks and they play a fifteen minute game of shinny. Over a winter the kids can learn to skate and learn the skills necessary to play organized hockey the following year. Power skating drills have since become an integral part of hockey on all levels.
One Saturday in February 1988 I was on the ice with my fourth group of the morning. The following weekend was my anniversary and birthday and Anne and I were taking off for a few days, so I was skating all five sessions and somebody else would take my place the following weekend. The coaches normally only skate for three hours each session. I was thirty-eight years old and feeling much older. Chasing fifty or sixty rambunctious four and five year olds for several hours was very fatiguing. I had just stopped to catch my breath and talk to another coach when a little one took a tumble and slid right at me, losing his helmet as he fell. The only thing I could do to make sure he didn’t hurt himself was to jump over him as he slid by. I did this alright but when I landed, one skate landed on the ice and the other stepped on his stick blade. One leg was firmly planted and the other leg took off in the other direction, forcing me to do the widest unintentional splits my body would allow. Before I even hit the ice I felt my groin tearing apart. There I lay, unable to move, with a gaggle of young kids laughing their little butts off at the coach who fell down on his ass.
I had pulled my groin before, so I knew the drill. Ice, rest, ice, rest etc. etc. Two weeks later it was still painful and swollen; Anne forced me to go and see our family doctor. After some gentle probing of my still swollen groin area Dr. Z. just muttered that something wasn’t kosher. “I normally would say see me in a week if the swelling hasn’t gone down, but something just doesn’t feel right. Let me talk to a couple of my colleagues.” Dr. Z. himself was a hockey player who had suffered a few injuries over the years, so I just went with his suggestion. A few hours later he called me at work to say he’d made an appointment with a surgeon friend to see me the next morning. I was more than a little concerned by his urgency; perhaps I had torn something.
Anne couldn’t accompany me to see the surgeon because she had scheduled parent-teacher meetings in the morning. As I walked along the corridor leading to his surgeon friend’s office I quickly glanced at the lettering on his door and stopped in my tracks. I cursed out loud as I read: ‘DR. JACOB GARZON, CHIEF OF ONCOLOGICAL SURGERY’.
“Take off all your clothes and lie down.” “But it’s only my groin!” “I don’t have time to repeat myself, I’m very busy and I’m only seeing you as a favor to Arnie.” That was my introduction to the self proclaimed ‘best surgeon in the world.’ Poke, poke and poke. Nothing said. Scribble, scribble. “Take this requisition over to radiology for a C.T. scan. Wait for the films and bring them back here.” “I don’t have time to wait around…..” “Listen to me. They do what I want when I want it done. So will you. Get moving.”
Less than two hours later I was back in Doctor Charming’s office. After a studious look at the pictures he said, “O.k., surgery is required; you can go home now to pack a bag and some toiletries. Meet me at the Emergency room at 18h00 to be admitted. I’ll operate as soon as an operating room is free in the morning. Don’t eat anything from now on. I’ll go over procedures with you tonight. Are you married? O.k. you might want to bring her back with you. And you might want to add the ‘c-word’ to your vocabulary.”
I left his office in a daze, completely unnerved and more than a little afraid. What the hell was going on? The ‘c-word’? Cancer! He had to be setting me up for a worst case scenario. I wasn’t feeling sick; I had just pulled my groin. What the hell was going on?
CHAPTER III
Diagnosis
When I returned home I called work and told the G.M of my situation; I had no answers to his many questions. I then poured myself a beer and called Anne at school; she came home right away. I had absolutely no answers to Anne’s many questions. I finally had to ask her to stop with her questions. “We’ll get our questions answered tonight.” I didn’t add, when you meet the coldest, most arrogant person you’ll ever meet.
“He’s such a sweetheart!” Anne chirped after Dr. Garzon had left the room. “I feel really confident things will go o.k. He knows exactly what he’s doing.” “All he’s going to do is open me up and look around to see what’s going on and then see what he can or can’t do. You heard him say no promises.” “I like his honesty”, Anne said.
Six o’clock in the morning comes awfully early at the best of times, but traumatically so after a night of enemas and a pubic hair cut. Yet everyone in the prep room and the operating room was in great humor. Even Dr. Garzon was almost smiling. At six-thirty in the morning I started saying the alphabet backwards to a nurse with the biggest smile I had ever seen. I could clearly hear her singing to the music that was playing in the operating room as she hovered over me fussing with my I.V. lines. She caught me looking and smiled. I was then off to a dreamless sleep.
About five minutes later I felt the most incredible pain somewhere in my body. It just wouldn’t stop. As I tried to clear my head, confusion overwhelmed me and I must have stirred. From far away somebody said, “You’re going to the recovery room.” “Whattimesit?” was all I could dribble. “It’s four p.m.” I couldn’t even do the math to figure out how long I’d been under.
I finally regained whatever senses I had left at about seven-thirty p.m. after several hours of surgery and three hours in the recovery room. I know I saw Anne on the ride to my room, but I was asleep again before they put me in my bed. Pain woke me up again a couple of hours later and I found Anne holding my hand. I looked up and got the surprise of my life when I saw her mother standing at the foot of the bed. I thought I was still dreaming. “What does it look like?” I asked Anne. She didn’t know what to say. Trying to protect me, she mumbled something about sending it to pathology, all the while trying not to cry. I just lay there with a head full of meandering thoughts; when I drifted off , the light was obscured by thick black clouds.
At about nine p.m. I got a shot in the ass for pain and then they woke me up a few hours later to give me another one. What a system! Then they wake you up to give you something to help you sleep. Then it was morning and Anne was back, smiling and as upbeat as ever. That was the first time since Matthew’s birth ten years earlier that we hadn’t slept together. The pain was still intense but I wanted to get up and walk. Earlier surgeries had taught me to walk my way to recovery and get out of the hospital as soon as possible. Besides, I was dying for a cigarette and had to test my legs to see if I could make it to the smoking lounge unassisted. Just outside my room we ran into Dr. Garzon doing his rounds. “Get back to your room and wait for me. I want to show these young doctors my handiwork.” Good morning to you too, asshole.
Dr. Garzon had a resident change my dressings. I thought Anne was going to throw-up when she saw my iodine colored abdomen, bejeweled with a capital U of shiny staples. Dr. Garzon began to pontificate; with great flair he stated that he had removed more than one-half of my bowel, two-thirds of my colon, a section of my liver, a piece of my pancreas, removed my spleen, a section of my intestine and also removed my appendix and gall bladder. He then described how the ‘mass’ had entangled the lymph nodes, artery and nerve bundles in my upper right thigh and groin and that he had been unwilling to completely remove the ‘mass’ so as not to cause significant nerve damage. As a last resort, because he had to remove so much tissue around the bowel, he had to staple the bowel to the abdominal wall. “It was a remarkable day of work, if I do say so myself.” He then told us the pathology report was sent directly to the Oncologist who would be in to see me later today. “There is no doubt in my mind the masses were cancerous. The Oncologist will confirm this and explain your options to you. I’ve done my part, the surgery was more successful than even I had expected. And, I might add, if any other surgeon had performed this surgery, you would now be wearing a colostomy bag. I’ll be by on Monday to remove the staples. My residents will see you over the week-end. Good-bye and good luck. See me in two weeks at my office.” His manner was so matter of fact that it felt like he was talking about me and not to me. In his unique way, he was actually reassuring. “Walk with me, I really need a cigarette.” At that, Anne stopped and looked me squarely in the eyes. “You just don’t get it, do you? You have cancer. Do you really think I’m going to sit beside you while you have a smoke less than twenty-four hours after you’ve had half your guts removed because of cancer?”
Later that morning a nurse brought some kind of machine on a stand into my room. She said that since I was already mobile, they would like my permission to use me as a guinea pig. The machine contained a self-administered supply of pain killers, to be hooked up to my I.V. Sort of like morphine on a pole. The machine would allow me to inject small amounts of morphine, etc. whenever I felt it was necessary, as often as I felt it was necessary. Of course, she said, there is a maximum allowance per hour, as opposed to the present regimen of a prescribed dosage every few hours. I was flabbergasted. Imagine, a patient being allowed some control over his pain management. I jumped at the opportunity. It was a simple procedure; if you needed pain relief, you pushed a button and morphine was injected intravenously. The dosage was controlled and was registered on the screen along with the time. It hooked onto my I.V. pole and was mobile. Off I went. No more shots in the ass at four a.m.
Dr. Arthur Rosenberg, Chief of Hematology, came to see me late in the afternoon. Dr. R., as he will be henceforth known, was also the Chief of Oncological Services (Hematology). He had taken over my file personally because he found my case ‘intriguing’. Anne had gone home for a few hours to make dinner for the kids. Up to this point we had only told them that I needed surgery because I was very sick; we wanted to hear what the Oncologist had to say before giving them any details. When Dr. R. asked if I was married, I told him yes and explained that Anne would be back around seven. After taking down some personal information and engaging in some small chat about the kids, he said he’d be back around seven-thirty; it was important he said that he talk to us together, that my wife would play an important role in the decision-making processes we would shortly undergo.
My first impressions of Dr. R. were good ones. He was an impressive man, tall, well postured and ruddy-faced with an air of sincerity and authority on him. I felt comfortable being in his company.
Dr. R. sat with us over coffee and tea and answered all of Anne’s many questions while I just sat and listened. After about an hour he ended our little soirée with instructions to call his office to make an appointment to discuss treatment options as soon as Dr. Garzon said I had recovered sufficiently from surgery. “Mr. McGarr, you’re in the food and beverage business and you tell me you are knowledgeable about wine; I’m on my way to a friend’s house for a late dinner of rack of lamb and I’ve been asked to bring a bottle of wine. Do you have a wine suggestion?” “Stop by the SAQ Selection and ask Monsieur Comeau for any vintage he has of Ch. Beaucastel.” “Mr. McGarr, I thank you for the advice. I think we’ve just begun a beautiful relationship.”
I woke up in the morning feeling pretty good, or at least alert. Thanks to the pain machine I had slept uninterrupted. But did I ever have to go to the bathroom. All the more surprising because it was Sunday morning and I hadn’t eaten a thing since I don’t know when. I had to ring for a nurse to ask for guidance. At first she suggested using the bedpan, but relented when I insisted I wanted the privacy of the washroom. “As long as you don’t flush, I have to examine your handiwork.” I told her it would be her privilege. The relief I felt was immeasurable, until I wiped my butt and saw the blood. When I looked in the bowl I saw blood everywhere and I almost freaked. That was the first of many times over the years to come I would be shocked at the actions and reactions of my body. The only thing the nurse said was “good, very good, you are moving. The blood is natural after surgery. If you are hungry, I can order you some breakfast.”
Tim was twelve and Matthew was nine years old. They knew that I had surgery and would be there for a few more days. Anne told them that I had an illness called cancer. We had decided that Anne would talk to each of them separately so they would each have her undivided attention and she would be better able to answer their questions. She wanted to deal with their reactions one on one. It was too overwhelming for her; she just wanted to wrap her arms around them and hold them tightly. But she did go on; she explained that I was very sick. Separately they both asked if I was going to die. Anne told them that some people did die from cancer but reassured them that I had really good doctors who were taking good care of me and working hard to get me better. When I got home I would have to rest for a couple of weeks then I would have to take some really strong medicine to kill any cancer that was still left.
We had decided not to hide anything from the boys yet we strived to protect them from any excruciating details and from our own fear. We made a family vow that they would always be the first to know of any changes, good or bad. It was important to us that they not get their information second hand from an overheard conversation or a well meaning relative or friend. They learned that it is o.k. to be scared and sad together. Most importantly, this initial experience solidified their trust in us as parents. They have learned that people can and do survive crises and move on. They have also learned that it is a strength to reach out for support.
As parents, Anne and I have experienced the terrible pain of not being able to fix our children’s hurt with a ‘band-aid’. We often wonder if they will always carry around a sense of vulnerability. Anne says the experience feels like a continually healing scab that can be torn open in an instant….knowing in advance that when it happens the pain will still come as a shock.
Early Monday morning a smiling Dr. Garzon came by to remove the staples. “When do you want to go home?” “Now!” “Not now, but later today. Have somebody pick you up. Call my office tomorrow for an appointment.” “I’m fine!” I yelled at him as he rushed out the door. When I finally got signed out that afternoon Anne’s father picked me up and drove me home. He was awfully quiet; I guessed everyone was feeling their own vulnerability. Mike’s marvelous meatloaf for dinner, what a treat! Later in the evening I quickly realized that I missed that pain machine already; I could only hope that the pills would do. I had spent four days in the hospital following major surgery; the average stay was nine to ten days. Better pain management had allowed me greater mobility and more restful nights, cutting my in hospital recovery time by more than half. I felt very good being at home with Anne, Timothy and Matthew. I felt their strength.
Two weeks later after extensive poking and prodding Dr. Garzon gave me the go-ahead to begin treatment. I sincerely hoped that would be the last we saw of each other. Two days later Anne and I found ourselves in Dr. R.’s office. It was May eighteenth, 1988.
Now that I had the fear under control I was better able to hear and listen to Dr. R.; Anne seemed to have returned to her normal stature. He emphasized that the conventional treatments that were available offered no better than a five per cent chance of surviving the first year, my cancer was too widespread. Still, he remained positive and encouraging. Over the years I have learned that statistics are for doctors, not for survivors, but at that time I was floored by his statement. There was still a significant mass of active cancer in my lower abdominal area; for that reason there could be no more delay in finding suitable treatment. Would I be willing to participate in a clinical trial if I qualified? Think it over. In the meantime he would check around to see what was available in the network and call me when he had some news. In the meantime, get as much rest as possible and try not to worry too much. In the meantime, rest. Crap! In the real meantime my General Manager had called to tell me that I would have a job to return to when I was able, but for now he had to hire a replacement for me because the Club was just too busy. Just shows how important you are to us, Mike. Take all the time you need to recuperate. Everybody says hello. I didn’t appreciate him at the time because all my thoughts were focused on me, but G.M. Chris Parkinson would turn out to be one of my staunchest supporters and one of the most understanding people in the workplace.
In 1978 I earned a degree in Sociology majoring in statistical analysis. We used programs like Statpak and SPSS for data analysis. In those days we had to keypunch data into mainframes. Just a few short years later I was surfing the inter-network, the WWW in its earliest stage of development. There were some good university backed cancer information sites, like Johns Hopkins and the University of Pennsylvania. Between the internet and the hospital library I was able to get quite a bit of information on my cancer and on clinical trials. Unfortunately, the news was not all that good. For the most part, progress reports on late stage clinical trials were not encouraging. Most late stage testing was pure experimentation, testing for side effects, drug tolerance and dosage levels. Combination therapies using new drugs in tandem with established drugs were in use for early stage patients but late stage trials seemed to be mainly for toxicity testing. Newer drugs were being tested on target groups, but since the aim of most trials was to get the chemo drugs accepted as standard treatments for the general cancer population, target groups were very carefully selected. This whole process could take years of successes and failures before approval was received. I did not have the luxury of time. Most trials were only being offered in the various cancer centers in the U.S., home of the major pharmaceutical companies. I wouldn’t make up my mind until I heard Dr. R.’s informed opinion. I knew I could trust his judgment.
I was feeling better three weeks after surgery than I had felt in the last three or four years. I had not been completely honest with the medical professionals about not having any symptoms prior to my skating incident. I certainly didn’t have any symptoms pointing directly to N.H.L., like night sweats, weight loss or extreme fatigue, but I just hadn’t been feeling well. I contributed it to a heavy workload, busy lifestyle, late nights, terrible diet, etc. It would only be a few years later that I would add excessive alcohol consumption to the top of that list. The real reason I was feeling so good now was that I hadn’t had a beer in three weeks. I couldn’t or just didn’t want to see that as a contributing factor to my not feeling well, although Anne certainly did.
Chapter IV
Treatment
Anne and I were back in Dr. R.’s office on May twenty-first. I had surgery on April eighteenth and I would be starting chemotherapy today. Dr. R. had found, he said, a promising clinical trial that seemed ideal for my diagnosis, physical condition and personality. Why personality was a factor or how he thought he knew anything about my personality from the short times we had met and chatted was beyond me, but I accepted his judgment. He spent about an hour explaining the drugs, their administration, toxicity, side effects and on and on. The chemotherapy protocol was very expensive but all costs were covered by the pharmaceutical company, hospital costs included. In return all participants agreed to maintain a daily diary and be monitored for a five year period after the protocol was completed, if you lasted that long. Then there were consent forms, waiver forms, hospital forms and the beloved daily diary. Years later I remember going back and reading parts of the diary. Did you know that in September 1988 I felt ‘shitty, but o.k.’ for twenty-seven out of thirty days. But that was still to come. “Do you need more time to digest what I said and to read all the paperwork?” I said no and Anne said yes. “Mike, sign these forms and take them over to the chemotherapy center. Ask for Louise. She’ll give you instructions on self-injection. Anne, I’ll do my best to answer any questions you may have.”
The corridor to the chemo rooms seemed to go on forever. Shit, I missed the part about giving myself needles. What else had I missed? Louise was young, pretty and very positive. She showed me how to fill the needle with the proper dosage, to inject myself subcutaneously and how to dispose of the needles properly since there were children in the house. That was that. She gave me her card with her home phone number in case I had any problems. When Anne met her she took the card from me for ‘safekeeping’ and asked if I was sure I wanted to go through all of this. “I have no other choice.” “That’s not an answer to my question.” “Yes, I’m sure. Give me back the card.”
The protocol I was to follow was to last two years. If at any time during the trial I wanted out, I could walk away. If at any time during the trial my condition worsened or I was not responding in a satisfactory manner, Dr. R. would remove me from the trial and attempt to find another appropriate treatment. Our first stop was the Oncology pharmacy where I would receive a two weeks supply of cyclophosphamide, vials of Interferon and syringes and sundry other necessary medications. Dr.R. said good-bye, and then stopped abruptly, asking us to sit down again. “Anne, even though you’re both in this together, these words are especially for Mike. It’s not going to be an easy time for you for a little while. Although this is not your first day being a cancer survivor, this is your first day of having some responsibility and control over how well you live the rest of your life and possibly how long that may be. Your wife tells me you’re a fighter; this is a fight for your life. I want you to know that I’m in your corner.” Anne and I were both shaking as he walked away. For the next two years I would follow a daily chemotherapy protocol that would, at times, sorely test both my physical and psychological abilities and my relations with family, friends, co-workers and most of the rest of the world.
The Oncological pharmacy at the Jewish General Hospital is a magical, mysterious place set apart from the other hospital pharmacies. Located at the entrance to the cancer treatment center, it is the starting point, the focal point for all those people who must undergo any form of chemotherapy. Nervous, anxious, worried people of all ages and sizes line up at the windows to present their chemotherapy protocols to the pharmacists who in turn head into the labs in the back, out of sight, to prepare the required dosages, fill syringes and attach I.V. bags to poles, all under the watchful eye of Mr. Goldstein, the head Oncological pharmacist and a true gentleman. When the meds have been prepared they are checked by Mr. Goldstein then delivered to the various chemo rooms where they are double-checked by the oncological nurses prior to administration. Mr. Goldstein seems to personally know every patient who undergoes chemotherapy, from their health status to their family history. He is also a wealth of information on complementary treatments, treatments for side effects, financial aid resources and all other kinds of necessary treatment information that doctors either forget to tell you unless you ask or that they are unaware of themselves. And he loves to talk.
I first met Mr. Goldstein as I waited in line to get my prescription filled. Because I wanted to get back to work as soon as possible and miss as little work as possible while undergoing treatment, my doctor had agreed to let me try a self-administered, at home treatment plan. If there were any problems, I in turn had agreed to return to the hospital for out-patient treatment. He walked up to me and said that since this was my first time for chemo, I would benefit from his personal attention. He put together my prescriptions himself then had me take a seat while he got me an injection chart. He told me the Interferon injections caused bruising, so I would have to alternate injection sites every time I gave myself a needle. He told me to inject myself in the evening. “You are aware that one of the side effects of Interferon is flu-like symptoms. These symptoms begin to appear about one hour after injection and last about six to eight hours. Rather than deal with this while you work, I recommend that you inject yourself after dinner and deal with the manifestations in the comfort of your home. This way, the worst that will happen is that you might miss a few social events at night or a little nooky once in a while.” Looking Anne right in the eye, he added, “You two can make that up later.” That would turn out to be the best piece of advice I ever received. “Taking cyclophosphamide requires weekly blood tests, as Dr. R. has already told you. From these results he will prescribe the daily dosage on a week by week basis; I will always double check. This week you will take eleven pills a day and don’t miss any. If you do, you will screw up the protocol and that will upset me. I’ll see you next week. Good health”
I took eleven pills and administered one injection the first day. At about nine p.m. I began to feel the onset of the flu, the fever, headache, sore all over feeling. I did what I was told to do; drink plenty of fluids and stay warm. A half-hour later I said out loud “Screw that, I’m going to bed.” Sleep didn’t come easy.
I actually felt pretty good when I woke up in the morning although I was soaking wet from the fever. The flu was gone and I felt rested. By the end of the first week I realized Mr. Goldstein had given me some good, free advice. At the end of the second week my white cell count had dropped by fifty per cent and Dr. R. was going to reduce my oral meds to five pills a day, three in the morning and two at night. “I don’t understand how this could happen”, he said, “I double checked both the morning and evening doses.” “I guess taking all eleven at once wasn’t such a good idea then, was it?” I asked. That was the first of many times that I would be called an asshole by him or other doctors.
I went back to work at the Club on May 28th; after a week on chemo I felt I could handle the treatments and the job. The two bartenders that the General Manager had hired to replace me were officially out of work. I guess he really did miss me. All my paperwork had backed up in the six weeks I had been away and I was immediately swamped with work. For the most part my co-workers were happy to have me back, though most were more than a little apprehensive about how to deal with my medical situation. I let my work ethic speak for me and a couple of weeks later it was as if I had never been away. Some wanted to talk but most people shied away from the topic of cancer. Only much later would I realize that this was to become a fairly typical reaction to the c-word. Except for the constant fatigue I was feeling I thought I was handling the chemo, work and my family responsibilities fairly well, although some days I was so tired at the end of the workday I barely made it home. I actually did fall asleep on the bus a couple of times.
The kids were handling the changes to their lives in a fairly typical manner; sometimes well, sometimes not too well. Following Anne’s instructions they had quickly left the initiative of when, how long and what we did together up to me, most of the time. Both of them, in their own ways, had come to accept that our lives would be different from now on. Both were very angry at times and although neither would admit to it, both were afraid at times. For the most part, they had adjusted to our new ‘normal’. Anne and I were taking every opportunity to talk to them about cancer in general and my situation in particular; they were listening and they were talking. They were also watching me very closely. I knew that; I also knew that the kids were too young to see their father running scared.
By the end of June I was extremely tired most days. I woke up tired and got more fatigued as the day wore on. It was six weeks since I had started chemo and one month since I went back to work. I was really looking forward to the Club shutdown in July; I felt I could sleep twenty four hours a day for the three weeks I would be on vacation. Each year the Club shuts down for three weeks in July for repairs and maintenance projects that couldn’t be done without causing disruption during the year. For three weeks our members used other private clubs while we enjoyed three weeks of vacation and outside contractors came into the Club to work. Anne, the kids and I were going to New Brunswick for two weeks. We had booked a cottage on Cape Cod last summer when we were there, but cancelled in April because of my diagnosis. We decided to stay in Canada for health reasons and Medicare coverage. It was a ‘let’s do it’ arrangement that we hoped would give us a cancer break. Anne didn’t drive yet; instead of me driving nine or ten hours, we decided to split the trip over two days. It would be a treat for the kids to stay in a motel with a pool and would give me a break.
With Dr. R’s blessing and an extra supply of meds we headed off to the Maritimes.
It was on the East Coast, watching the kids play tourist that I learned my first survivor’s lessons. Live life to the fullest, laugh a lot, enjoy every moment as it happens. Share this appreciation with others. My wife and children have taught me so much over such a short period of time.
Chapter V
Support
The autumn and winter months are the busiest times of the year for us at the Club. I had been on chemo for about four months and had not missed one day of work. I was determined not to use any of my sick days unless I really had to. All of my tests and appointments with Dr. R. were scheduled at seven a.m. so I could be at the Club for our nine o’clock meetings. I was dog-tired most of the time but had come to accept fatigue as a normal state. I was coaching Matthew’s hockey team again and Dr. R. had given me the o.k. to play hockey again, with the proviso that if I got bruised or hurt in any way my season was over. Playing hockey and drinking beer go well together and we would gather in some tavern after games for a few beers and some small talk. Then I would go home and have a few more beers after Anne had gone to bed. Dr. R. had not expressly told me to avoid alcohol, just to practice moderation, but I don’t think he ever knew how much or how often I drank. I certainly had not told him. The truth be told though, I would have had those beers with or without hockey; drinking beer was a serious pastime I had brought with me to my cancer diagnosis. I was not a social drinker. Actually, I shouldn’t say that; I was sociable for the first couple of beers. I then became a ‘sit by myself and be morose’ kind of drinker. Only Anne seemed aware of what was really going on and she had me on the defensive most of the time.
By the end of November I had been on chemo for six months. The flu-like side effects had disappeared and I still had a full head of hair and my moustache. Except for the chronic fatigue I was just about side effect free. My main problem was that I was running out of injection sites. My thighs and abdomen were so badly bruised I had to start using my lower back as an injection site.
In February of 1989 a longtime friend died from Non-Hodgkin’s Lymphoma that had spread to his brain. We had played hockey and coached together for many years. Frank had been a member of the Polish national team and was one of the most natural skaters I have ever seen. He had only been diagnosed after I had started chemo, but, diagnosed late, he never had a fighting chance at survival and died in less than a year. He had two boys who were classmates of Tim and Matthew at Loyola and Anne and his wife were on friendly terms. At his funeral, Frank’s wife gave me a hug and wished me better luck. She was a brave spirit.
I haven’t seen too many of my old friends since I was diagnosed. Cancer is a very difficult illness for some people to accommodate in their lives. Most people don’t like to see any physical change in others except that brought upon by natural aging. To see somebody going through the physical turmoil of a serious illness reminds them of their own vulnerabilities. In my old group of friends there seems to be a pervasive attitude of ‘I don’t want to disturb you (read: I don’t know what to say to you.) so you call me when you’re feeling o.k.’ going around. That attitude seems to cover a lot of fear and ignorance, two aspects of humanity I had never before seen in people I had known and socialized with for years. I never had the opportunity to talk about my diagnosis and prognosis with most of them. There was a lot of talk about me, but very little of it directed at me. It was left up to me to broach the topic and give the necessary reassurances that things were fine. The thing that bothered me most, that actually hurt me was the inability of many of them to look me in the eye or to smile or even offer a warm look. The attempts to cheer me up when I really didn’t need cheering up or the patronizing insincere words detracted from our histories together. I don’t have time for that bullshit in my life anymore. That’s a cancer realization. Family and friends who really care, even if they are uncomfortable or don’t know exactly what to do let you know they care by letting you know that they are there for you. They don’t wait for a phone call. I thank God for Anne, my best friend. In my high school and university days if someone had suggested to me that my life long best friend would turn out to be a woman I would have told them they were crazy.
And then there’s Duffy. Mike Duffy and I go back about forty years although for many years we only ‘kept in touch.’ We first met in Montreal then moved to Toronto where we shared a basement apartment together in the late sixties, went out West together and generally raised shit together in our single days. Mike eventually settled as a permanent resident of Toronto, got a good job, got married, got divorced then met somebody again; I moved back to Montreal and Anne and I traveled around for awhile before getting married and settling down. Mike and I were the best of drinking buddies. In the late sixties, Toronto was a barren wasteland for a couple of ex-Montrealers who had left the most beautiful women in the world behind in Montreal. The city of Toronto had not yet started to develop itself as the American city it is now. Then it was just a backwards provincial capital with a few bars and no restaurants to speak of, full of Maritimers looking for any kind of work. You had to drink to amuse yourself. Actually, it’s still like that only it’s a lot bigger. Mike had one serious problem when he was drinking, his mouth separated from his brain. I can’t remember all the times we had to fight our way out of some bar because of the things he had said. I was always the victim of his verbal set-ups. If anybody for any reason had gotten under Mike’s skin he had to scratch the itch. His favorite stunt was to pass a table of ‘irritants’, as he called them, usually on his way to the washroom, and tell them that I, or somebody at our table thought they were assholes, or they were making too much noise or that I said the women with them were ugly. He would then wait for the fight to start before joining the melee. Then we would have to fight our way to the door.
When I was diagnosed with cancer Mike was one of the first people to get in touch with me, just to talk and listen. He came into town the next week and we went out for dinner. He paid, as he has continued to do for eighteen years. He worked for a pharmaceutical company and had a very good client entertainment account .He also considered our dinners to be a form of educational consultation. He is still a hell-raiser, but he’s still a great listener. About a year later his wife was diagnosed with breast cancer. His need to reach out brought us even closer together and I was able to give back to him some of the time and attention he had offered me. After years of intermittent contact, we had re-friended.
Chapter VI
A real problem for the guy in the glass.
At the end of my first year of chemo I was told my cancer was in remission. Still, I couldn’t jump up and down because I would have to follow the clinical trial protocol for another twelve months. In the last few months both Anne and I had become involved with Hope and Cope, the cancer support group for patients and their caregivers at the Jewish General Hospital. There aren’t enough superlatives in the English language to describe the people and the organization that is Hope and Cope. On one level it is a self-help support group, people helping people help themselves. On a higher level it is a very comforting, encouraging, strengthening gathering- place where people can truly be themselves and are not judged or evaluated, but rather appreciated. I lasted about four or five meetings before I had to walk away; I just couldn’t get comfortable in that kind of group environment. Tell your story then listen to others tell theirs; discuss a cancer topic chosen for the evening. Over coffee listen to the odd person who would bitch and whine about their lives all the while trying to avoid the guy who wants to hug you and tell you everything is “gonna be o.k.” Maybe that’s a slight exaggeration, but I have never been comfortable in ‘group-think’ environments. Anne stayed with the caregivers’ group and found the support invaluable. She always had the patience of a saint. I, on the other hand was too closely involved with my own cancer situation to be able to contribute anything significant to a group of people who seemed only to want to talk and talk about their situations. It would be several years before I would realize how wrong I had been to blindly judge those people who were sharing their cancer stories the only way they knew. One major thing I did learn from my short stay was the need to consciously set goals for myself to be used as progress marks along my cancer journey. The first goal I set? I wanted to attend both my kids’ graduations from Loyola.
Halfway through my second year of chemo I was feeling pretty confident that things were under control. I was cancer free, the chemotherapy didn’t bother me at all and I received a pleasant surprise at work. The Clubhouse, an eighty year old heritage building in the heart of downtown Montreal facing McGill University would have to undergo significant structural repair. A new building had recently been constructed attached to the Club on its Eastern wall. The excavation had caused the Clubhouse to slip off its foundation on that side. The tilt was noticeable inside the Club where walls had cracked and doors would no longer close tightly. The company that built the new structure accepted all responsibility and agreed to pay all costs involved in bringing the Clubhouse back to its former condition. Actually they had no choice; the Clubhouse had been declared an historical site back in 1975 and the provincial government would have made the necessary repairs and then taken legal action to recover costs. What it meant to us was a five month paid vacation; the Club was also to be compensated for any additional costs and lost business revenue.
We again spent a couple of weeks down East and when we returned from our vacation, against Anne’s wishes I looked for a part-time job tending bar. We could always use the extra money and I would get my beer for free. I never did find that job.
The Club re-opened for business in December. Everything was strangely normal; it was as if we had just closed for the week-end. The Christmas season was upon us and we were busier than ever. I worked about sixty hours a week from early December through to February when the roof caved in on me.
I had been feeling poorly for about five or six weeks but had not told Anne. I had lost so much weight that I started to wear suspenders instead of a belt. I didn’t even know that they were back in fashion. By mid February I was experiencing constant abdominal pain and was throwing up everything I ate or drank, surviving on Tylenol when I could keep them down. I wasn’t sleeping properly and was in a constantly black mood. Anne was extremely agitated and concerned. I was also very worried but not ready to confront my fear. All I wanted to do was to get through the busy season at the Club; I could then take time off to rest and recuperate. Call Dr. R., never; I was only scheduled to see him in early March.
Well, I never made that March appointment. I was so sick one Friday night that Anne just wanted to call an ambulance. I got even angrier and refused. She then put in a call to a local area doctor who made house calls. After a five minute assessment, he told her to give me some chicken soup. Anne reminded him of my history and that I could not hold down even a sip of water. She then asked him if he was a real doctor. He angrily replied that she had called him, told her to bring me for x-rays next week and huffed out. Anne then called the ambulance. After the usual tests and x-rays I was admitted to the hospital where, after having my abdominal area drained of six liters of fluid, I was diagnosed with severe pancreatitis, caused in part by the chemo, in part by the surgery but mostly by alcohol abuse. At the hospital we were told that due to severe dehydration I may not have survived the weekend without proper treatment.
It was finally out in the open. I had a drinking problem. Anne sat quietly by as doctor after doctor admonished me and gave me stern warnings and made dire predictions if I did not heed their words. Dr. R. only stopped by to tell me that my chemo was finished, that I was cancer free and to see him when I was discharged. This whole situation upset him; he had been caught completely unaware. Not too many people seemed pleased with my self- inflicted condition. I went through severe alcohol withdrawal and caused the hospital staff all kinds of problems. One time I removed my intravenous supply, got dressed and left the hospital to go to work. Hospital security found me wandering down Cote Ste. Catherine Road looking for a bus at eleven o’clock at night. I spent the next sixty days in hospital without ingesting food or water so that my pancreas could heal. All of my nourishment was obtained intravenously. For the most part the nursing staff was barely civil to me; they didn’t seem to care for people who are responsible for causing their own illness, especially through abuse. I also had to endure lecture after lecture about changing my lifestyle, respecting my body, getting counseling, etc. etc. etc. The night before I was to leave what had become an asylum to me, the three doctors who had overseen my recovery came by for a not so social visit. They attempted to make me understand how close I had come to suffering permanent damage. Bottom line: no more alcohol of any kind ever again; I might not be as fortunate the next time.