Marty’s Journey to the Dark Side

• Diagnosis Date: January 20th, 2000
• Age at diagnosis: 45
• Diagnosis: Squamous cell cancer
• Stage of tumor: Stage 1
• Surgery: Yes, Radical Neck Surgery
• Radiation: Yes, 25 treatments
• Chemotherapy: No

October 1999
I can remember exactly when I felt the lump in my neck for the first time. My son, Jake (age 13) and I were driving to Toronto to see a pre-season Raptor’s game. During our conversation, I turned my head toward him and I felt a swelling in my neck. I had a bit of a cold at the time so I figured the swelling was a result of the cold. This swelling, however, seemed a little extreme.

November 1999
The lump was still in my neck, and my cold had dissipated. I contacted my family doctor and he suggested it might still be lingering from the cold, but we should keep an eye on it.

December 1999
During the Christmas holidays my brother-in-law, who is a gastroenterologist, looked at my neck. He suggested I make an appointment in the New Year and get a specialist to look at the lump. Being busy at work and not wanting to take any time off as I was coaching a basketball team, I didn’t get down to the hospital until January 20th.

January 20th, 2000
I was examined by an internist and he suggested I have a biopsy done on my neck. The biopsy was done that same day. The doctor who performed the biopsy asked if I wanted to stay and wait for the results. I gave him my cell number and explained I had to leave to watch my son play in a basketball game.

My cell phone rang and it was the Doctor. He informed me I had squamous cell cancer. I quickly pulled over so as to not loose the connection. I asked him a number of questions to determine the severity of the cancer. The most important question I had for him was would I survive? Too many tests still had to be done, but he thought we might have caught it early.

To say I was numb was an understatement. My body broke out in a cold sweat. I had to drive another half hour to watch my son play basketball. When I arrived at the gym, I sat beside a close friend during the game. I put on a really good act throughout the game and on the way home with my son. He kept asking me if everything was alright. My mind was racing out of control, and I couldn’t carry a conversation with anyone.

My wife, Julie, was in Toronto conducting interviews to prospective teachers, and she couldn’t be reached. When she arrived home around nine p.m. she knew immediately when she walked in the door that something was terribly wrong. I told her the events of the day, and I just sat on the couch and cried. I was healthy when I had left for work that morning, but now I was staring face-to-face with cancer that evening.

February 2000
February was a month of more tests and getting some answers as to what was going to be ahead of us in the quest to fight the cancer. The biggest challenge was to find the primary sit of the cancer. The lymph glands on my neck had just collected the cancerous cells. The renegade cells originated elsewhere. A quadroscopy was scheduled at Mount Sinai Hospital in Toronto, Ontario, Canada. This was performed by Doctor Ian Witterick. This procedure is one in which the Doctor biopsies different areas in the mouth to see if he can find the primary site of the cancer. It’s like looking for a needle in a haystack. Because there was nothing immediately apparent, Ian’s expertise focused in on some regions at the base of the tongue. The tumour was located at the base of the tongue on the midline. After waking from the anaesthetic my mouth was dry and my throat was the sorest it had ever been. I took a tiny sip of water, and I can still feel the pain when the water hit my mouth. It was like a drop of water hitting a frying pan with hot oil in it. My mouth was sore for a couple for weeks. The tumour was a grade one tumour. Tumours are graded from one to four, with four being the largest stage.

Now we knew where the primary site of the cancer was; it was time for the radiation oncologist to take over. Doctor John Waldron of Princess Margaret Hospital scheduled a series of appointments over the next two weeks. He explained that I would be receiving 25 radiation treatments to the head and neck area. This was to shrink and eradicate the tumour. Initially it was going to be 30 treatments, but he felt I was young and strong enough to take a higher dose in a shorter period of time. I told him I was good with that. I had no idea what was involved in being treated by radiation. Did I put my head in a machine, would it hurt etc? I soon found out that it is a complicated procedure involving a lot of preparation.

The Mask
When you receive radiation to the head and neck your head has to be stabilized to ensure the radiation beam is hitting the targeted area every time. In the year 2000, the protocol was to make a mask out of a transparent plastic material. I have seen the masks being used today and they have come a long way in six years.

So hear we were in the basement of Princess Margaret hospital waiting to have a mask made. I entered a room where they put a Plaster of Paris material on my face and let it harden. This would then be used to make the plastic mask. All of us in the waiting room were in various stages of shock and uncertainty. Whoever thought we would be in the basement of a hospital getting a mask made so that I could then be given doses of radiation to fight cancer?

After having the mask made, there were numerous appointments for x-rays, CT scans, and the ominous MRI. Of course, these procedures were new to me. I had heard of them before but I had no idea what they entailed. The x-rays were a piece of cake. The CT scan was different as they injected a dye into my blood stream and then scanned my body. Each test took a day, factoring in the two hour commute to the hospital, the waiting, the testing, and the commute back. You have to gear down when you are sick. Delays happen, and if you are impatient it becomes a long day.

The MRI was a test. If you have an MRI done on another part of the body it isn’t as confining as the MRI done on the head and neck. You are placed on a table and secured to the table so as to keep your head and neck from moving. Ear plugs are inserted to muffle the sound of the magnets when they start resonating. They are quite loud when the machine gets going. The table moves you into a long encasing tube where the top of the tube is inches if not centimetres away from your face. You have to go to a different place in your mind if you are at all claustrophobic. The technician talks to you to assure you and comfort you throughout the procedure. I imagined myself on a tropical island basking in the sun. I was in there for approximately 50 minutes. You have to go through periods of time when you can’t swallow. This was very difficult. If you swallow, you might have to stay in longer for them to get an accurate reading from the scan.

Another day was set aside for a mock run through of the procedure. My mask was placed on my head and bolted to the table. Dr. Waldron, the radiation oncologist, proceeded to make many marks and calculations on my mask as he lined me up for future real treatments. My mask looked like a calculus teacher had written his lesson all over the mask. This was serious stuff. Two small tattoos were placed on my chest to provide anchor points when I was attached to the table.

With the radiation destroying the salivary glands, the lack of saliva is a major problem for your teeth. Your teeth need saliva to stay clean and deal with bacteria. If I had this cancer 25 years ago, they would have pulled all my teeth because they would have become rotten and fallen out due to the lack of saliva. I was fitted for a mouth guard at this meeting with the dentist at Princess Margaret Hospital. Dr. Linda Lee explained to me that I had to put my teeth in this mouth guard every night. You fill the mouth guard with a fluoride gel. This keeps the teeth hard and less susceptible to decay. This was just another part of the preparation for battle I needed to equip myself in understanding.

25 radiation treatments
How hard could 25 treatment of radiation be? The radiation technicians were fabulous. Over the five weeks we became very close. They explained to me that everyone reacted differently to the radiation, and that some people could carry on a relatively normal life during the treatment. I was hoping to be the poster boy for radiation and treat it like a walk in the park.

The radiation treatment rooms are below grade at Princess Margaret Hospital. You go down a few floors and swipe your card. This lets the technicians know you have arrived. I had asked for mid-morning appointments as I had an hour and a half to two hour drive each way, they were more than accommodating in my request. You had to be very patient when you arrived. Some days the machines went down and there would be a one or two hour delay. Other days, the technicians would encounter patients with problems and there would be delays. Once inside the treatment room, it only took about 15 to 20 minutes. There was a beautiful picture a seascape as you entered the room. You could bring in your own CD or listen to the ones they had during your treatment.

Day 1
I met all the technicians and they were very comforting and reassuring. I lay down on a steel table with my mask on my head. The mask was bolted to the table to eliminate any movement. Once aligned, the technicians left the room, and I could hear a brief buzzing. The foot thick lead door opened, and the technicians came back into the room to realign the radiation beam. When they left, I could hear the buzzing again. It only lasted for approximately 6 seconds. This procedure was repeated four times. After the last beam, I was unbolted and free to leave. Man that seemed easy, only 24 sessions to go. I said my goodbyes and drove an hour and a half home. I knew it was going to get worse, but I held out hope that I would be the one who didn’t react adversely to the radiation.

Day 5
It was Friday of the first week, and I had driven myself to and from the hospital all week. My wife, Julie had taken most of February off accompanying me to all of the pre- radiation appointments. I was receiving radiation from both sides due to the fact that tumour was on the midline. This meant that the salivary glands on both side of my mouth would be destroyed by the radiation. All week I paid close attention to my saliva, appreciating every drop of the lubricant. After my treatment on Friday, I stopped for a coffee and a muffin. Up to now everything seemed pretty normal. I was a little tired, but it wasn’t a big deal. When I took a bite of my muffin, I realized that it wasn’t being moistened the way it should, and I couldn’t swallow it without help from the coffee.

That weekend it got worse. How was I going to survive without something you don’t even think twice about?

Weeks 2 to 4
When you get a serious illness, you realize who your friends are and aren’t. That is another entire story unto itself. Julie had arranged a series of drivers to take me to the treatments. The list of friends willing to take a day off and drive to Toronto was humbling. Another option I had was to stay at the Lodge in Toronto. This is a place where for a nominal fee, you can stay Monday to Friday and receive a shuttle bus to and from your appointments. We thought it was best for the family if I went down to the hospital each day. At least that way there would be some normalcy to our life. It was important for me to see my wife and son every day. My oldest son was away at school in the States during this time.

The going got tough during these weeks. With radiation treatments, you don’t feel the beam of radiation when it is emitted. It is a gradual burning of the tissue. It compounds every day. The inside of my mouth was becoming very sore as the tissues were being burned. Princess Margaret prepares a mouthwash that numbs the inside of your mouth. This enables you to tolerate drinking or eating. I was also given liquid morphine that helped ease the pain. My weight was dropping rapidly. That tends to happen when you can’t tolerate food due to the pain of putting the food in your mouth. The doctor had mentioned putting in a feeding tube if I continued to lose weight. For whatever reason, I didn’t want to go through the hassle of having a feeding tube inserted. Looking back, that would have been the smartest thing I could have done. During my weekly checkups my weight was taken. I made sure my pockets were full of keys, change, cell phone and anything that could add to my weight. With the loss in weight, incredible pain, and the three and a half to four hours in the car, I was having a rough time. I would get home from the hospital and go to bed. I would get up when my son would come home from school. Once again our friends helped out and drove Jake to school every day.

Week 5
It was Monday of the last week, and I had just celebrated my 45th birthday on the weekend. Well it wasn’t much of a celebration, but I had family and friends around me and that was the best gift of all. Monday was a rainy day and the trip to and from the hospital was very difficult. When I returned home, I phoned Julie and told her I couldn’t do it any more. I was extremely weak, I couldn’t put food or water in my mouth and I was losing weight too fast. In the end, I lost 60 pounds.

As a result of the phone call to my wife, I spent the next five weeks in the hospital hooked up to intravenous tubes for nutrition and pain control. During that time period, I couldn’t put a drop of water let alone food in my mouth due to the severe burning. I still had four more radiation treatments that had to be completed. They were the toughest, but I got through them.

Thinking back to my first day of treatment and how I wanted to be the poster for radiation, I realized in the end, I was the poster boy for how brutal radiation can be. To this day when I go back for check ups, the doctor brings in students and shows them the extreme side effects of radiation treatment.

Hospital Stay (April 2000)
The stay in the hospital was just what I needed. I obtained my nutrition and morphine intravenously. The nurses and doctors were fabulous. I had a number of people visit me. Sometimes the morphine took over and I imagined people in the room. I watched two episodes of “Law and Order” a day along with “Magnum PI”. The good part is I don’t remember the episodes, so I can see them today and still think I am seeing them for the first time!

May 2000-Radical Neck Surgery
When I was released from the hospital, I had to have more tests completed to see if the radiation eradicated the cancer. The only viable option was to have an operation called radical neck surgery. At the beginning of this journey we knew this might be a possibility. It is a major operation where they basically remove muscles, nerves, and vessels from your neck. The major side effects of the operation are one side of your neck is removed, loss of mobility in your neck and arm, and an accumulation of lymph fluid under your chin. The five hour operation was performed on May 15th. When I was coherent a few days after the operation I looked at myself in the mirror. I looked like Frankenstein with half a neck! There were numerous stitches and staples in my neck. People visiting me put on a good act, because it was not a pretty site. After a week in the hospital it was back home where home care came in every day for a month to tend to the neck.

Summer of 2000
The summer of 2000 was spent trying to put on weight and trying to wean me off my pain killers. I had an analgesic patch on my arm that emitted a pain killer throughout the day.

Throughout the summer, I slowly decreased the strength of the patch until I was on Tylenol 3’s. I then went to Tylenol 2’s and eventually by the end of August, I was pain and drug free.

Living with cancer-the side effects
My life seems to be divided into two parts. It’s like life before and after you have children. Things are really different. I refer to life before cancer as my other life. Physically, emotionally and spiritually, life is different. That’s another story for another time. As mentioned earlier, the side effects of head and neck cancer are severe. Below are listed the side effects I have encountered. Hopefully, your reaction to the treatment won’t be as severe.

Dry Mouth
I have a dry mouth every minute of every day. This will not change over time. I moisten my mouth with water etc every couple of minutes. I have tried every artificial saliva product on the market, and they are short term solutions. In the beginning, I took a sip of water every couple of minutes when I was trying to sleep. The doctor’s said I would get used to sleeping with a dry mouth; they were right. After about a year, I was able to sleep or should I say lie in bed without having to drink water every couple, of minutes. Six years out of treatment, I will sip five or six times a night. Of course with drinking water all day and throughout the night causes you to go to the bathroom more than normal. I am up a lot throughout the night using the washroom.
Throughout the day, I have a bottle of water with me at all times. I need to sip every minute or so. If I get caught without my water it is very uncomfortable, especially if you run into someone and you start talking. Yikes!

I can’t remember what it is like to eat a meal and not have to put a liquid in my mouth to get the food lubricated enough to swallow. If I go to a restaurant and I don’t bring my water with me, I am held captive until my drink arrives. If there are munchies to eat on the table, I have to wait for my drink to arrive. It is impossible to take a bit of food and swallow it unless I put some liquid in my mouth. This becomes tiresome at times, but for the most part this becomes normalized and I do it without thinking about it.

A side effect of the radiation is the hardening of the tissue on the shoulders. This tissue also hardens inside as well and the muscles and tissue around the esophagus isn’t as pliable as it once was. Just this past year, I have found it more difficult to swallow food. My ENT doctor said this was a result of the radiation and the swallowing could be improved by putting an instrument down my throat and stretching the esophagus. I had this procedure done in February 2006 and again in October 2006. It’s a simple procedure, but it requires a general anaesthetic. Swallowing is much easier after the operation. Hopefully I won’t have to have it done every six months.

Thyroid Gland
Approximately three years after the radiation and operation, I was feeling tired all the time and I felt cold when I shouldn’t have felt cold. I explained these feelings to my family physician and he suggested I get my thyroid gland checked. The radiation had damaged the thyroid gland and it was under active. This is corrected by obtaining the proper strength of a thyroid drug and taking it daily.

In Closing
If you are diagnosed with a head and neck cancer and you have to go through radiation treatment, it will be a rough ride. But here’s the great part-you will get through it. Your family and friends will be there every step of the way. In battling cancer, you have to get worse before you get better. But you will get better. So much has improved in just the six years from when I was diagnosed. I hope this has been somewhat of a help for anyone with a head and neck cancer.

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"What makes cancer so horrific is how it continues to torment and taunt its victims long after the treatments are finished"
– The Globe and Mail

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