Catching Up, Part 2: Escaping the Fear Cage

This is the second post to catch up on what’s happened so far. This all took place over about a week, so there won’t be many more posts before I’m current.

We came home that night and processed the news as best we could. The best way to describe my mental state is to point out that intense fear becomes a cage. I entered that prison of fear as soon as I lost the phone connection with Dr. Kelly at the BART station.

BART

I had the words “squamous cell carcinoma” in my head and a burning need to understand. What is it? How is it treated? Am I going to die? My only contact with cancer was from my childhood. Both my grandfathers died of cancer when I was about 7 or 8 years old, within a couple weeks of each other. My knowledge of cancer was in the 70’s too: Cancer = Death.

I started with various sites talking about squamous cell carcinoma of the tonsil. I read a bit about HPV in head and neck cancers, but my focus was more on the disease itself. I read survival stats and potential outcomes. I’m a systems designer. I understand stats, at least how they feel when they’re in play.

I texted my close friends to tell them the diagnosis but as I mentioned before, telling people who care about you that you have cancer is (for me at least) the worst part. I would be on an even keel, with my Spock brain engaged, and then a good friend would clearly be overwhelmed by the news or tell me how sorry they were, and I’d instantly flip from logical to crying. My friends were and are super supportive and they said and did all the right things, but my own mental state drove me further into the cage and it started closing in around me.

I read blogs and information about the side effects of radiation therapy and chemo. A lot of that information was old, but I didn’t notice. I was definitely in that prison of fear now, huddled on the couch, not even making notes but just taking it all in. My cell mates in this fear prison were real bastards:  loss of taste, loss of salivary glands, third degree burns, mouth sores, debilitating nausea, feeding tubes… I felt powerless in this cage, like I would have to be their bitch if I wanted to live.

I did want to live. And then I felt that seed of irritation. I’m no one’s bitch. No one tells me what to do. If you know me, you know I go my own way. I value my independence and creative problem solving. I don’t take someone else’s answer as The Truth. I don’t give up just because things are hard. I wouldn’t have gotten where I am in my career if I just rolled over when things got in my way.

This is MY body, MY turf and yes, MY cancer. I have the ability to act and make decisions. I don’t hide from problems. I’m not just a fighter: I’m a warrior. I was still in the cage, but I had the spark that makes you start thinking about escape.

A friend, Scott Miller, has shared with me an interest in low carb and primal diets. He also knows a ton about supplements and relentlessly follows the latest studies and news. I emailed Scott to ask his advice for cancer-fighting supplements. I also read an earlier recommendation from him for the book Anti-Cancer. I emailed Peter, my boss at iWin, told him about the diagnosis, and said I needed to work from home the next day so I could start to process and understand this. I asked him to keep it quiet until I figured out what I wanted to do. I’d decided not to tell my parents until I had spoken to the oncologist.

Dr. Kelly left me a message, saying he’d been thinking about me and wanted to call since we got cut off earlier. He reassured me that the cancer was treatable and had a good potential outcome. He said he knew from the time he’d spent with me that I’d be one of the people who walked away from this disease. He told me it’s OK to be afraid, to acknowledge it and then it wouldn’t have so much power over me. He was right, and I was starting to realize that.

Escaping the cage was a lot of work. No one thing handed me the key. This was a full-on prison break that took several days of planning, time and effort. I stayed up until 2 AM that night reading Anti-Cancer. It’s an amazing book. It filled me with both knowledge and hope. I took breaks from it to do REAL research and I’ll share a bit about that in another post.

The next day, I started off by emailing the folks at iWin who work closest with me and telling them about my diagnosis. Anti-cancer had opened my eyes, and I started to become less afraid to talk about it. I alternately worked and researched, and set up my consultation with Dr. Khuntia, the radiation oncologist who would be handling my treatment. That night, I finished Anti-Cancer and got a second book, Cancer: 50 Essential Things To Do. It, too, filled me with hope and knowledge. It colored my research and helped me see it in the right light.

The night before my first consultation with my radiation oncologist, Dr. Khuntia, I got a call from Dr. Kelly. He asked me if I needed more Vicodin for the biopsy pain (I said yes, please!). Then he told me the lab results showed the tumor was strongly positive for HPV. I’d done enough REAL research by that point to know what it meant: much more treatable, much lower chance to recur. I wasn’t relieved–I was ecstatic. I couldn’t stop smiling. I was still in the cage but there was light shining through the hole I was digging to escape.

By the time I met with Dr. Khuntia, I was almost ready to go through the escape tunnel. Charlie and I sat in the doctor’s office and I asked a million questions, based on what I’d read. I’d studied enough that everything he said made sense. I knew how the treatment worked, and I knew his recommendation was on the cutting-edge side of “gold standard.” He was straight-forward, honest, smart and kind. He looked down my throat and confirmed that from his examination and the PET scan, the cancer was only in my tonsil, a bit of palate, and probably one lymph node. He told me the treatment had a high probability of success, but in terms of quality of life, it is the worst cancer treatment next to bone marrow transplant.

He didn’t tell me what stage it was. Staging cancer is a primary way to determine a treatment plan… and survival odds. I’ll talk about what happened in my follow-up post about research.

I came away from the consultation feeling not just confident in Dr. Khuntia… but confident in myself. I’d prepared myself. I was objective and honest. I listened and learned more from his expertise. I made it through the meeting calm, focused… and happy. I realized I was actually happy.

My biopsy sites still hurt badly enough to keep me on Vicodin, I still had to tell my parents and family about the cancer, the treatment was going to be rough, and I was feeling dubious about my dental health (more on that in another post)… but yes, I was genuinely happy. The odds were good for treatment success but even more important, I felt like I understood what was happening and I was able to make decisions. I crawled through the tunnel and back into the sunshine.

On the drive back home, Charlie and I passed the Google Self-Driving car. At a time when you’re relying on science to save your life, that’s a damned good sign.

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