CANCER, MY SPIRITUAL JOURNEY Pt. 2

WHAT KIND OF FRESH HELL IS THIS?—MY TREATMENTS

Depending on the cancer, the main protocol to battle cancer is chemotherapy. The procedure is injecting metal and other substances into your body which poisons you almost to death. Then oncologists pull you back from death’s door. Many cancers are produced by rapidly dividing cells. Your hair is made of these kinds of cells. So in destroying these cells, you lose your hair. To administer chemo in large doses, surgeons install a disk-shaped port into your shoulder under the skin which has a tube leading to a major vein. This way they do not burn out your smaller veins with temporary inserts. Then they insert a large needle into that rubber disk. This is painful.

Another method used to combat cancer is by giving large doses of radiation to burn the tumor out of your body. In some drastic applications they give you both radiation and chemo at the same time which multiplies the effectiveness of both the chemo and radiation. It, also, makes the patient really sick. This is what happened to me.

I was admitted to the hospital for a week for the first round of chemo so they could monitor me. I was being given two different types of chemo at the same time and they did not know what the physical effects of the poisons would be. When I packed for my stay, I took three books: my Bible for my faith, a college logic workbook to keep my mind sharp and an art book to fill time practicing drawing. Strangely, as I began to lose my mind, it was art that ultimately saved me. It filled my time with worth and value.

At first, I had a room to myself. Then they moved in a dying patient. No matter how hard I worked at staying positive the continual moaning began to wear me down. I moved my chair out into the hall and slept there until they moved me into another room with another dying man. This poor guy was quiet but extremely disoriented. One night a doctor came into see him and told him, “You know what’s happening to you? You’re dying! This is happening because you will not stop drinking!” As the doctor turned his back to leave, the patient got out of bed and walked toward the doctor but fell, landing hard on the floor. I looked up thinking the doctor was going to help him up but he just stood there lording over the top of him. After a minute I called the nurse and she came and put him into bed. The doctor thanked me and left.

After the first round of chemo and radiation, I was sent home to recover. I got violently sick and began to throw up everywhere. At one point I even opened my bedroom window and puked outside. I thought I was not going to make it through the night. When I awoke in the morning, I went out to my backyard and laid on the grass so I could feel the earth. I spent the day puking and rolling away from spot to spot until the backyard was a mess. Debi called the hospital asking them if this was normal and found out they had dismissed me without the medication for nausea. After getting the proper medication for nausea, things got a little better.

We got a call from the hospital that my National Association of the Self-Employed Insurance was fraudulent. We bought the policy at the Kootenai County Fair and had been making payments to it for years. It had a high deductible but was designed for catastrophic care, so we were told. The social worker told Debi, “We don’t know what you have but it is not healthcare.” Debi worked hard to get answers from the agent that sold us the

policy. She contacted the firm but nothing ever came of it. My doctor told me, “Jim, (They called me by my first name.) don’t worry. They cannot kick you out. It’s a government hospital.” I just started to cry. Debi and the social worker, Maggie, got in touch with Shoshone County nurse, Sharon Conners. I became an indigent patient with liens against my property. Still she argued for the best deals and saved us vast amounts of money.

Soon, I could not talk or get any food into my stomach and my mouth was full of sores. When you shed your entire tongue, it goes out only two ways, out your bowels or your mouth. As my condition continued to deteriorate the doctors admitted me to the Intensive Care Unit. I got out of bed and walked the hall with a puke bucket in my hand figuring that if I was vertical they could not bury me. Finally, doctors decided to place a feeding tube down in my stomach so I could get liquids into me. When I got into the operating room it was full of steel with implements hanging on the wall. The sight scared me. I had visions of the movie “Braveheart” where near the end of the movie they disemboweled William Wallace. I closed my eyes and willed myself to pass out. As it turned out the feeding tube became my best friend, even though at first I was frightened of it. My concern was that if I put too much food into the tube it would come up and travel down my throat into my lungs. I could drown. Using simple logic, I figured I could drink a quart of fluids. That would be my measure.

At the same time all this was happening I was taking chemo three days a week for about eight hours at a time. At one point I was becoming belligerent to the nurses, in part because I was losing the cells in my brain to “chemo brain.” Debi leaned into me looking outwardly compassionate and whispered, “If you don’t straighten up, I’m gonna kick your ass.” I never acted up again. Before we would start chemo, I would go and get radiation. This meant they bolted me to the table with a form fitting mask and left the room to escape the radiation. The level of desperation and claustrophobia that swept over me cannot be described. I confided my reactions to my minister, who had been through radiation with breast cancer, and she gave me this sage advice. “Jon, I want you to picture your fear. Then put it in a box and place it high on a shelf where only you know where it is. Then tell it, ‘I know about you but I will deal with you later.’” She told me to offer this prayer while I was bolted down, “God above me. God below me. God’s love surrounds me.” Those simple acts helped a great deal. I know where my fear lives and after all these years, I have yet to open that box.

As a result of radiation poisoning, my neck flesh became burned and blistered so they decided to put me back in the hospital to fight the infection. I was told to put cream on my face by one doctor, only to be told it had to be taken off by another doctor. It apparently was the wrong cream. As I removed the one cream in preparation for the other, my flesh began to tear off of my neck. I asked the nurses to help me, but they did not want to assist. I finally got a straight answer from Sandy (one of my favorite nurses) who told me the nurses were frightened that I might involuntarily hit them from the pain. I told Sandy, “I’ll sit on my hands. I am a long distance bicyclist and I understand working through pain.” Soon a young nurse came to my room and began taking off the cream and peeling the skin away as I drifted in and out of consciousness, sitting on my hands. When I looked into her eyes, I could see she was crying.

I became sick from radiation poisoning and started to hiccup all day long. I was in trouble. I could “hic”, but not get the breath out to do the exhale “up” part. For one full day, I willed myself to breathe. I really wanted to live. Staying with my exercise, I got up out of bed and started to walk every couple of hours. This time the cancer ward had moved to a different building with a rose garden. I would stroll on my walker out to the lovely, hopeful garden and make the circle. When I came back to my room one day, I saw a bag of blood they wanted to give me. I declined because I figured I had enough problems without taking blood. As it was after all my treatments, I did come home with a social virus that did not have before. The nurses continued to administer shots into my stomach to increase my white blood count and I never took the blood. But as my brain burned out with chemo, when I was not walking, I drew circles on my art pad just trying to stay sane.

My last rounds of chemo were entertaining to say the least. My bicycle nurse buddy Nurse Nancy, changed out of her gown into a rubber outfit to change the tubing into something that looked serious. Then she wheeled in the chemo and oxygen tank. “What’s the tank for?” I asked. Looking at me she said, “In case you stop breathing.” I replied, “Wow, this is getting sporty!” After the last hard hits, I was outfitted with a fanny pack and had chemo around the clock for four days a week for two weeks in a row. Finally, I told the doctor, “If you give me any more chemo, I am going to die. I feel death on my doorstep.” Dr. Iccoboni looked up and said, “You’re right. It will. We are done.”

To celebrate I put on my bike jersey, called my friend Del and asked him to ride with me for the hardest mile in my life. I puked the whole way.

The decision as to my remission was left up to my new wonderful ear, nose and throat (ENT) doctor, Jeffrey Bunn, in Spokane. He consulted with my primary care doctor, Dr. Branz, who delivered the news, “YOUR CANCER AND TUMOR ARE GONE!” Debi and I sat and cried for half an hour. After seven months of hard hitting treatments, I was finished.

RULE TWO: FITNESS

When I went into the hospital, I was fit. For several years, I peddled between Wallace and Harrison twice a month doing the 100 mile round trip in six hours. When I was not headed to Harrison, I was climbing Dobson Pass or mountain biking up some mountain. My personal battle cry was, “They can not bury you if you’re vertical!” During my three hospital stays, I got up and walked behind a wheelchair putting a paper bucket on the seat for vomit. Part of the reasoning for pushing my body during my treatments was, I figured, if the chemo was to enter my body, I wanted to get it in fast by making my blood move so it could do more with the poison. Then I could get it out of my system sooner so I could feel better. I cannot tell you if that was medically correct, but it seemed logical. At the same time I read Lance Armstrong’s book about his battle with testicular and brain cancers. I figured what one man can do so can another.

After I was finished with the February treatments, Debi pinned my feeding tube to my bike jersey and I began to ride again under the shelter of the freeway bridge. When the weather got better and my distance increased, people on the trail would slow down and stare at me as I pulled the tube out from my jersey and poured water into it by holding my water bottle up in the air.

The disintegration of my jaw caused by radiation resulted its own set of problems. Doctors took the small bone out of my leg to fashion the new jaw. In fact, the only original part of the bottom of my face is my chin. I am held together with fused bone, titanium and screws. After leaving Seattle, I got up one morning to discover a large hole in my face. Debi had to act as my nurse packing my face with iodine string so that it could heal from the inside out. Then I found a Philips screw poking out of my face. That resulted in an additional surgery to cut out a section of titanium to remove the screw. Later on, when I was working with my head tilted up for a long time, I tore my radiated flesh. After four years it still has problems closing up.

The removal of the bone from my leg caused more challenges. Doctors asked me to get out of bed and exercise. So I asked them how much exercise did they want me to do? They did not give me a target but told me if I did not move I would get drop foot. Drop foot is a condition that causes you to lose the use of your foot. Another problem was that the bone they took out has an arch that gives you balance as you move. After meeting with the physical therapist (PT), I started moving around with a contraption that looked like a speaker’s lectern. When I asked the PT how I was going to be dismissed from the hospital, he told me that they would wheel me out to the car. I told him that was totally unacceptable. I walked four times a day, logging 5 hours a day, with my longest workout at night when people were asleep and floors were empty. When I was finished walking, I jumped into wheelchairs and worked on my upper body despite having all these tubes draining blood in my face.

After getting home, I decided if they wanted me to walk one mile a day, I would do six. We bought a shoe that would fit my swollen foot and off I went with my cane. Mornings, I walked by myself. In the afternoons, I walked with my friend Don Hoffman and his dogs. Then I would come home and dance with Ellen. Evenings, I smoked pot to dull the pain and went out again. Prior to my jaw removal, I had filed as a candidate for Shoshone County Commissioner. I had the option of quitting because of the jaw replacement or I could continue the race even though the deck was vastly stacked against me. I decided to walk the county in my off hours from my easy construction jobs. The problem was, not only did I have trouble talking, but every house had stairs. After tumbling down a couple of staircases, I figured that if I walked like a crab, sideways down the steps, I could knock on doors. I lost the election even with my wife delivering my speeches, but the 4,000 sets of stairs saved my leg and gave me assurance.

The summer following the jaw surgery I started to concentrate all my efforts on climbing Dobson Pass on my bicycle and surpassing my previous seasonal climb of 92 summits. The first time up the Pass I found out the scar tissue in my face squeezed off the blood vessels to my brain when I put my hands in the drops of my road bike. (Drops are the bottom part of the handle bars that curl). If I wanted to pull the brake levers, I would pass out from restricting blood flow to the brain. I tumbled to a stop and walked most of the way down the mountain. I did not give up! I simply changed bikes. I started the climbs using my much heavier mountain bike that kept me more upright. I found out I could not drink water while I peddled so I trained myself not to drink until I got to the six mile top. On Sundays I did both sides of the pass. I rode the six to eight percent climb followed by the 12 percent climb, all without water. By November, I submitted Dobson 103 times. With my other climbs that year, I had peddled over 200,000 vertical feet or the equivalent of seven summits up Mt. Everest from sea level on a bicycle.

End of part two. See the Saturday, April 15 edition of the Shoshone News-Press for part three.