By Arthur Cote As the doctor moved his fingers around the protruding mass on my neck, he stood back and looked in my eyes and told me to go across the street at that moment to get a biopsy done of the lump. He said the last biopsy wasn’t conclusive. The urgency startled me, I left the office and went directly to the pathology lab. One year earlier, I had gone to an ears nose and throat specialist. After a biopsy, I heard those wonderful words “its not cancerous”. At a dentist appointment later in the week, an oral surgeon assured me not to worry about the lump in my neck. That it was related to the root canal I had had and it would go away. In fact the surgeon showed me he also had a lump from dental work he had done. I dodged a bullet that day. So I relaxed and went on my way. We took off from San Francisco international airport en route to Wilmington North Carolina to attend a wedding. It was May. Beautiful weather. We touched down, got our rental car and drove to our hotel to start our 2 week vacation. My wife, Debbie, had to travel up to Canada for a few days on business while in NC, I would stay with a friend while she was away. I was very excited to hit up a great burger place in town with my buddy Jim the first full day of our trip. This burger, found at PT’s Burgers, is one of the wonders of the world, with the most crispy and delicious french fries. As we sat down to eat, my phone rang. It was my ENT doctor. He said calmly and without stopping, “Mr. Cote, unfortunately the biopsy came back positive. You have a Squamous Cell Carcinoma on your neck and it must come out immediately.!” My lunch was over. I sat for awhile, unable to speak, pick up my burger, or move. It felt as if sound itself had ceased, that I sat in a vacuum. My legs trembled a bit. I asked the caller if I’d be alive in a year. The doctor was silent for a few seconds, then told me he couldn’t say until he saw the tumor. I asked if I should return to California immediately, he demanded I enjoy my vacation. I was in for a rough course when I returned home. Returning to Jims’ office, I sat at a desk trying to work. It was an impossible task. All I could think of was how much trouble I was in. After about an hour, Jim suggested we leave the office for the day. We picked up a bottle of Tequila, and headed to his house for an evening of forgetting. Thankfully, the night passed. Morning had come, cancer was my first thought. That I may be dying was the second. I was down right scared out of my wits. But I was able to get some work done. Debbie had called the evening before and told me the doctor had called her too, but she hadn’t spoken with him. I told her the news. I eagerly looked forward to her returning to Wilmington. We partied for the remaining days as “cancer” kept pushing itself into my consciousness. As we drove to the airport on our way back home, we spoke about what we were going back home to. Surgery had been scheduled for Jun 2nd, a few days after our return. June 2nd arrives. Hospitals have always been a place of refuge to me since working as an EMT in NYC whilst in my twenties and in school. I had complete confidence in my doctors, and in the hospital, UCSF Medical Center in San Francisco Mount Zion. While I was terrified as they wheeled me into the operating room, and strapped me down on the table, I wasn’t sure I w ould come out of the surgery in tact, but I knew I was in good hands. My surgeon, a top guy in head and neck cancer, told me point blank how serious the surgery was. As I woke up in recovery and saw Debbie’s beautiful face, I knew I had made it. But when I saw her expression, I knew it was serious. When my surgeon came in to check on his handiwork, Deb had sort of confirmed to him that my prognosis was good. That I would just “Need some radiation and then I’d be fine.” He shot back asking who had given her that news. That in fact, the tumor was stage 4. It was very serious and offering a prognosis was to early. The biopsy and planned MRI would tell the story. My next step was to recover from surgery and see a radiation oncologist. The first night in my room. I suddenly felt a gushing of pain all over my head and neck. I called the nurse to request more pain meds. She informed me I had gotten my quota of tylenol for the day therefore I would have to wait for tomorrow! I asked her if she was kidding, that I had had surgery earlier today. She wasn’t. I sat up all night in screaming agony. The next morning I told my surgeon what happened. He went out to the nursing station and changed the order from PRN (as needed) to every 4 hours. Entering the exam room I glanced up at the signage over the room: oncology consult. It slammed me in the face as if I ran into the wall. The doctor introduced herself as a radiation oncologist. Her second was chief resident. As Dr Kam moved in front of me, she rattled off a check list: MRI, Radiation, then Chemo. When I asked her if I would be in need of Chemotherapy, she snapped back we needed to wait for the surgical biopsy to return, but she was just setting things up as she saw them. This doctor was very matter of fact. I could tell by her bedside demeanor they didn’t hold high hopes for my survival. I presented as a very ill young guy at 53, in relatively excellent shape – running 3 miles a day. As the exam progressed, Dr. Kam pressed their must be a primary tumor somewhere in my body and that it has to be discovered and treated. Result? An MRI, and a Pet Scan. She also scheduled me for radiation therapy: 33 days 5 days a week. While the MRI and Pet Scan was negative, no additional tumors were found, Dr. Kam pushed hard for me to begin radiation. She informed me I would most likely have dental problems resulting from the treatment, moderate hair loss, and other bothersome side effects up to and including getting a feeding tube installed in your nasal cavity. I told her I would not have a feeding tube, and that I would make it out on my own two feet in the end. She politely smiled. Day 1 Radiation assessment exam. I walked into the radiation oncology unit with great trepidation. As I sat down, Dr. Kam explained how I would need to be measured for a mask that aids in keeping the head still during treatment (right). As the system shoots rads at you in the general direction of where the tumor lived, ones whole body has to be screwed down onto a table that based on computer commands, moves to required positions for deliverying treatment. The measurements were taken, I was given my treatment start date, and went on my way. I recall feeling like my life was in its waning days, that all this action by doctors on my behalf was an attempt. That in fact my prognosis was on shaky ground. The pain got worse as I healed from the surgery and started radiation treatment. My sons strongly suggested I try cannabis to ease the pain and to ease my high anxiety over beginning treatment. I tried it and was amazed that I was able to sleep for the first time through the night. Cannabis saved me. First Day Of Radiation Treatment I arrived right on time for my first appointment, thinking I can get in and out as fast as possible to get the hell away from the hospital. Upon entering the waiting room in the basement of the hospital (UCSF), I was met by a fellow who took me around to show me the “ropes”; first change into hospital garb – opened-in-the-back gown, and surgical pants. Entering the patient waiting area, I was shocked to find it crowded with what looked to me like the walking wounded. Some looked worse than others. The room was hot, very uncomfortable. Watching the waiting patients gave me a sick feeling in the pit of my stomach. A man sitting next to me told me he had prostate cancer and was almost done with his treatment; he looked like a corpse that was unaware of his death. When the technician called my name I was relieved to get the hell out of that room, only realizing I’d be sitting in that room at 3:20 every day for 33 visits! Yikes. I entered the treatment room. The staff placed me on the table, nailed down my face mask using clips that connected my head to the table. As I laid there waiting, I thought “What happens if there is an earthquake? I’m screwed, thats what!” A warm blanket was placed on me, and I was told the treatment would start once the techs left the room. My mind was racing. Panic set in. What the hell was happening here? Why was this happening to me? Then the machine whirred to action and the treatment started. Each day, the treatment lasted 10 minutes. Each day I loathed more and more to go to the hospital for treatment. Before the first full week of treatment had concluded, it was Friday, I woke up feeling very ill. Vomiting, bad stomach cramps, dizzyness. Feeling really ill and in bad pain. The doctor said it most likely was the flu, and that I should drink lots of fluids. After 2 days, I ended up in the emergency room. The ER physician examined me and called in internal medicine consult. My sodium level was dropping dangerously low, and they didn’t know why. They admitted me. Endocrinology consult came to my room the following morning. She explained the suspected culprit was my adrenal glands. That perhaps they weren’t working fully if at all, and that would cause a drop in sodium level. Dr. Bellgo ordered an MRI of my brain, and blood work. Dr. Bellgo delivered the results. Somehow along the way, my adrenal glands were “blown out”, or as she put it, atrophied. I asked how this could’ve happened. She mentioned she had looked at my pre-op labs and that my sodium levels and other metrics were normal. So it happened sometimes from the tumor surgery forward. No doctor would address what exactly happened. When I mentioned it to my surgeon, he shrugged. He wouldn’t address it. No one would. Until this day. To stay alive I need to take 2 steroids replacement therapy. This continues 2 years later. After I left the hospital, my doctor was VERY anxious for me to start up radiation again, so it was rescheduled. And I went through each day of treatment feeling like a hot dog in a microwave oven. My body ached, and burned from the results of surgery, and now new pain from the radiation treatment. I concluded the radiation treatment, and am left with chronic neuropathic pain, and muscular pain on my right side where the tumor was. If I didn’t have access to cannabis, I would be in big trouble. Cannabis relaxed me enough to be transfixed to a table for radiation treatment, and it relaxes me every night, blocking the steroids enough to let me get a good nights sleep.
Posted on: Tue, 24 Sep 2013 14:10:17 +0000
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