When I started this blog a few months ago, I never envisioned it becoming personal in anyway, but my life has changed dramatically since then. This is the first entry in an ongoing record of my experience, thoughts, and emotions as I come to terms with my cancer diagnosis and treatment. I hope it helps people understand what I am thinking and feeling or provides some support to others who are going through a similar ordeal.
Unbeknownst to me, the warning signs of my lung cancer emerged right around Thanksgiving 2016. At first, it appeared to be a simple case of “laryngitis” resulting from a bout of bronchitis. However, the “laryngitis” persisted after the bronchitis disappeared. After about two weeks, I thought it might be something more serious. In the end, it lasted for more than a month, which was very frustrating and isolating experience.
I was working as a substitute teacher, but I had to cancel several days of work to try and give my voice a chance to recover. I also missed several social events because I wanted to stay home and avoid straining my voice. I could manage a hoarse whisper at best, and sometimes it took three or four tries to make people on the phone understand me. I also couldn’t talk on the phone so whenever a doctor or anyone called I had to have my parents answer. I felt very isolated, impotent, and frustrated because I couldn’t even have basic interactions on my own. I appreciate what my parents were doing to help, but it was also infuriating because I was losing my independence (which will be a recurring theme in future blog posts). To try and avoid taxing my voice too much, I began writing everything down on paper, which was awkward and inefficient. I also had to cancel several job interviews because my “laryngitis” just never went away.
Finally, I got into to see a doctor on December 22, 2016, who diagnosed the “laryngitis” as a symptom of my acid-reflux disease. He prescribed some medicine which didn’t really help at all, so I eventually saw an ENT specialist. The ENT specialist stuck a camera down my throat and discovered that my vocal cord was paralyzed. I couldn’t speak because my left vocal cord wasn’t moving at all and couldn’t contact my right vocal cord. Because the vocal cords weren’t touching, I couldn’t speak. My body compensated by activating muscles that weren’t even part of my voice box.
The ENT specialist said he could inject some medicine into my paralyzed vocal cord that would help it swell up and make contact with my other vocal cord so that I could finally speak. As a precaution, he also ordered a CT scan of my neck to see if there was anything that might be impinging upon the nerve that might explain why it suddenly became paralyzed. He assured me the results would come back “clean,” and I completed the scan the next day, December 23, 2016. They injected me with a tracer compound that made me feel all warm and fuzzy.
I wasn’t expecting results for a few days, but the doctor called back only a few hours later and said the results were “very alarming.” Although the CT scan focused on my neck, it also revealed tumors in my neck, lungs, and brain. He told me not to jump to conclusions, but obviously cancer was the first thing that came to mind. The doctor said I had to have a bronchoscopy, MRI and PET scan right away. The bronchoscopy would let the doctors take tissue samples which could be analyzed to determine if the tumors were cancerous. The MRI and PET scan would give them a better idea of other places to which the apparent cancer may have spread. My parents were devastated by the news – my mom’s face was completely slack and my dad has his head in his hands. However, he quickly rebounded and assured me we would all fight it together.
This led to a very stressful for Christmas for my whole family. My mind frequently operates on several tracks at once. Various trains pull ahead of others briefly, and then a different one takes the lead. Sometimes there is a huge collision where all the trains burst into flames and all the passengers die. Over the Christmas holiday, my mind jumped around on four main tracks. First, I of course hoped it was all benign and that everything would come out fine. I was a healthy person – I did Cross Fit three times a week! This wasn’t really happening to me, but someone else surely. I had never smoked and had no other symptoms, so I hoped this was a mistake or maybe some sort of Truman Show scenario where I would discover that I was really just a guinea pig under observation. Second, I was already of the mindset that if it was cancer, I would be victorious and all of us would go back to the Christmas service at St. John’s Unitarian Church next year. I’ll celebrate with a long-delayed return to Europe. Third, there was the possibility that something else an entirely, such as an infection, had caused the tumors.
Finally, I was also terrified because I thought that I was already a dead man if the apparent cancer had progressed too far. I tried to focus on enjoying my family’s company and love on Christmas, but I couldn’t stop wondering if this was going to be my last holiday with them. I enjoy brewing beer and bottled a bourbon barrel porter with my dad on Christmas day. We’ve bottled beer together for several years, and he has always been a cheerful and eager assistant. When I got anxious about spoiling the beer, he always calmed and reassured me. I couldn’t help shake the feeling that this might be the last batch we ever bottled. I tried to focus on the minutiae of bottling the beer by counting how many strokes of the pump it took to fill the 16-ounce bottles with beer (for the record, it took about 16-20 pumps on average). We also upheld our family tradition of driving around to see the Christmas lights in the neighborhood. I remember as a teenager being thoroughly bored by the situation, but now I wanted to treasure every moment like it was the last I’d ever have. We also watched my favorite Christmas cartoon “The Snowman” which almost brought me to tears. It was like reaching back into my childhood to find some safe refuge from all the terror on the horizon.
I tried to distract myself during the day with various activities, such as reading, video games, and renewing my interest in scale models. I had a number of miniature figures that I had bought more than a year ago and somehow had never found the time to paint. The figures came from a game called AE WWII which blends science-fiction, fantasy, and alternative history. It helped engage my mind, because the figures are only 28mm tall and have a lot of detail to them. It required a lot of time and attention to paint them and glue them to the bases. Cross Fit was also a great respite because it’s so intense you can’t really think about anything else for an hour except finishing the next burpee or box jump.
But at night, I quickly found that sleeping was very difficult. It was very hard to be alone in my mind in bed every night. My brain was swamped with regrets and what ifs, particularly about a recent breakup from my ex-girlfriend. It took forever to fall asleep and I frequently woke up during the night. I have sleep apnea and use a C-PAP machine, and, although I usually don’t have any problem using it at night, it had become one more distraction that made it hard to sleep. So, I tried sleeping without it, which only meant that what little sleep I did get was not very restful.
After what felt like an eternity, I went in for the bronchoscopy on December 27, 2016. It finally started to sink in that this was really happening to me. The bronchoscopy would allow the doctors to take some tissue samples and they put me under light sedation. I was supposed to be in a “twilight” zone where I wasn’t fully sedated but neither would I be fully awake. However, I distinctly remember certain parts of the procedure, especially at the end.
I think the sedation either wore off early or wasn’t fully effective. Either way, I remember an intense choking sensation as my mouth filled with blood or some other fluid. Occasionally, a nurse would suction it out of my mouth. There was a mask over my face, but it fell off several times and I could see the doctors looming over me. I also remember moving my arms and legs around on the operating table and that the staff tried to keep me in still. They also talked to me a lot, especially at the end, and tried to assure me that the ordeal was almost over and that I had done well. It was an unpleasant situation that only added to my sense that I was beginning to be overwhelmed by this experience. There was nothing I could do – I was merely along for the ride as people continued to scan on my brain and stick me with needles on a regular basis. I also felt helpless because there wasn’t anything I could do to change the outcome. This wasn’t a test that I could study for, because the answer was already inside of me. Whatever the result was, it was going to change my life forever.