In various blog posts I often end with a reference to my dodgy health and physical condition. Aging is clearly a part of this, but much of what I refer to goes back to the cancer that was found 17 years ago, and particularly to the effects of the cancer treatments which have given me these last 17 years. Life is full of yin and yang, and there are a thousand sayings referring to the idea that there are inevitably both positives and negatives inherent in any action or event. Here’s how this all fits into the tale of my health since 2006.

I was visiting some friends in late summer of 2006 when my friend Gail Street mentioned I was swollen at the top of my neck on both sides, and that I might want to have it checked by a doctor. I had been feeling run down and agreed, assuming swollen lymph glands might be a sign of an infection or illness. Several visits to a couple different doctors over a couple months led to a thoughtful reference to an infectious disease specialist in Fargo, North Dakota, a couple hours drive north of me. The doctor took one look, made no recommendation or diagnosis, but told me he was making an immediate appointment that afternoon with an ear, nose and throat (ENT) specialist for me. A very short exam led to a preliminary diagnosis of throat cancer and a further appointment for a tonsillectomy which would be used for a biopsy. It was a very long and dreary ride home with phone calls to make to my daughters and other family. To say that Linda and I were subdued or thoughtful is to grossly underestimate the impact of a diagnosis of a spreading cancer.

The return visit to the ENT doctor was no better. The removed tonsils were filled with a tumor of squamous cell cancer, a CT scan showed probable spread to lymph tissue, and I had at least stage 3, and very possibly stage 4 metastatic cancer. In response to my inquiry, he even made the comment that I had less than a 50-50 chance to survive five more years. At my first visit he had talked up the cancer treatment facility that resided in the same building, but after looking at the scans and the biopsy, he told us that I should go to Mayo Clinic which would be better able to deal with my case. When we got home I did my own research reading various medical journal articles on treatments for my cancer, and it looked even more grim, as the articles made it look like a successful treatment meant that I might live for two years rather than one. None of the articles mentioned full remission of the cancer. I didn’t lose hope, however, because of two things: medical trials are done on volunteers whose cancer is quite advanced, and were likely to be older and less healthy than I was, and published articles are often referring to research done several years before. There might be new ideas that I didn’t see.

Two weeks later we made the first of what would become dozens of visits to Rochester, Minnesota, where the original, and largest Mayo Clinic facility resides. Linda and I went into the office of Dr. Kerry Olsen, an ENT specializing in cancer surgery and treatments. In contrast to the gloom of the visit in Fargo, he was upbeat, confident and straight forward. He had seen many situations like mine and had recently been part of a team which had developed a new treatment for my cancer. Was this a recently developed chemo drug or an innovation in gene therapy? Or perhaps an implant of a radioactive treatment that promised to be my salvation? No, it was simply using the same coarse tools that had been used for years: 1) surgery to remove cancerous tissue, 2) radiation to kill growing cells, and 3) chemotherapy, with an old drug, also to kill growing cells (Much of cancer therapy revolves around the fact that cancer tumors are growing faster and using more resources than other tissues. If you engage in an action that harms growing tissue it will disproportionately harm the tumor. Collateral damage to other growing or metabolically active tissue is the yang to the yin of killing the cancer.). The trick was simply to do it all at once, and with maximum intensity, getting a synergistic effect, so that the cancer cells not removed by surgery would get a double or triple whammy and their demise enhanced. In effect it was the “bigger hammer” option, as in “When all else fails, get a bigger hammer.” Treatments would not last for months, as they often do for other cancers, but only six weeks, once I had recovered enough from surgery to get radiation and chemotherapy.

After my visit with Dr. Olsen I was sent to the radiation oncologist and the medical oncologist (who prescribes chemo and monitors your health to make sure you can keep receiving treatments). All three echoed the same story. I would have a very serious, extensive surgery that might lead to more surgeries to fix the damage done by the first surgery, that they would beat the living daylights out of me with a lifetime dose of radiation and high dose chemotherapy, and that they would cure the cancer. I might never work again. I might never eat again. I would likely lose my saliva and my teeth. People even died occasionally from the treatments. Did I want to go forward and allow them to do this? The answer was easy. Of course I did. Even diminished I could be a husband and a father. I doubt anyone says “no” to their presentation. What else can a person do?

Thus, two weeks later I returned to have my radiation mask created and more scans done to pinpoint cancerous areas. Mayo had just installed new machines that were able to pinpoint radiation treatments to very specific points in my neck, but that would only be helpful if tumors were correctly located and if I was severely restricted in my movement so that the narrow beam of radioactive particles hit the cancer tumors and missed as much healthy tissue as possible. Thus, my head and neck were draped with strips of a soft pliable plastic that would harden as they cooled and dried to become a stiff mask conforming perfectly to my head, neck and shoulders. I just had to lay very still while it hardened. Of course they left my nostrils open, but as I remember even my eyes had strips that meant it was almost impossible to open my eyelids when I was clamped in. My head and neck were not to move.

I received the big surgery, ended up in an emergency room back home from complications, lost a lot of weight, found out that I have an allergic reaction to opiates that made accepting the post surgical pain preferable to the meds, and generally felt that I likely had seen the worst of it, a mistaken illusion. After a month of healing I went back to Mayo to live for six weeks while I received radiation and chemo. The chemotherapy occurred the first day of treatment, three weeks later, and on my last day of treatment, two liters of Cisplatin each time. And every weekday for six weeks I would give one of my blues cd’s to the technician to play as distracting music and lay on the table to get clamped in to receive radiation for half an hour. The radiation gun moved around in a pattern that had been programmed by my radiation oncologist and shot radioactive particles into 17 different locations in my throat, neck and the lower part of my head. I was lucky that I had no problem with claustrophobia as many people needed sedatives to remain calm and motionless in the mask while the treatments occurred. Radiation is a funny thing in that you feel nothing while it occurs, but the cumulative effect of over a month of high dose radiation is massive. By the second week I was basically unable to eat anything. Food was not just lacking taste, but was indescribably offensive. It was an evil substance that my body and spirit just refused. One would think that I could just suck down a few nutrition drinks, but by the end of the second week I was struggling to get 500 calories a day, and by the end of the third week even that was impossible. Had I been able to force myself to eat, it would not have helped as I could no longer swallow, my damaged throat tissues making so much mucus that it was choking me, coughing gobs of mucus into towels every few minutes 24/7.

I lost so much weight that my space age mask could no longer hold me in a perfect position for the fancy radiation machine, and the technicians basically “shimmed me up” putting cloths below my now skinny neck to try to keep me properly positioned and immobile. During the fourth week the most painful aspect of the treatment began. The skin on my neck and shoulders deteriorated and sloughed off, until raw meat was showing through the cracks. Linda would apply the ointments and compresses while I cried out, so that once I was protected I could go out to face the next radiation treatment or visit to a caregiver. I had also just received the second big dose of chemo, so my general physical state and my energy were at rock bottom the fourth and fifth weeks. I was the walking dead. During the fourth week my medical oncologist decided that I had lost too much weight and was in danger of not finishing the treatments, and a tube was inserted directly into my stomach so that I could receive liquid nutrition, bypassing both my damaged throat and my even more damaged appetite. That, however, was a real turning point. I would sit in the recliner with the bag of food mounted on an IV stand dripping into my stomach. I could just as well say a bag of strength, or a bag of energy, or even a bag of determined optimism. The difference in mind and body when you are receiving 1500 calories each day in comparison to when you are getting 150 calories per day is incredible. Even amid the pain and lack of sleep the world became bright and desirable again. I think the food even helped my radiation burns heal, as they seemed less painful the sixth, and last, week of treatments.

I walked to get my last dose of chemo on a bright late winter day with what felt like a bounce in my step. Something I had doggedly tried to do, even through the worst of the treatments was to acknowledge those around me; to say please and thank you and to look people in the eye and smile so that the words seemed genuine. I’m not sure that I was able to always do that in my zombie state, but without the ability to do anything else, it was a minute by minute goal, starting with always being polite to my wife, Linda. Still, I am sure there was rarely much conviction behind the words. One becomes totally divorced from what we usually think of as the real world in the throes of such medical treatments, and focusing upon the people I came in contact with was a way to keep a tenuous relationship with the world. I lacked the strength, though, to project my feelings, until the last day of treatments. My smile was very genuine that last day.

And then it was over. All through the treatments I had been unable to entertain a thought that seems innocuous now: the number of radiation treatments remaining. I could keep track of how many I had received, but not how many were left; it was just too daunting – until the next to last day. Suddenly my brain allowed me to go into the radiation waiting room and think, “After today there’s only one more.” I went in for the last one with what I believed to be a big smile, and walked out into the sunshine as if I was leaving prison, even though I still had the last chemo treatment to endure. I was weak as a kitten, having lost 65# over the four months since the tonsillectomy, and would not be able to sleep for more than 15-20 minutes at a stretch for months, but I felt the scales falling from my eyes, allowing me to see the world again. I truly felt reborn, but as a newborn I had to figure out how to live in the world. Unlike many people less fortunate I had a second act to develop. That will be the topic of the next post.