Brian's Story

In late January of 2017 at age 62, I attended a conference in New York City on recent technological developments in the aggregation of real estate databases. While there I had some mild symptoms of what I thought was a typical winter cold and cough. After flying home, I began experiencing severe, localized, headaches that literally brought me to my knees from the sudden, sharp pain. I had experienced migraines years earlier and these episodes were worse. I then made what proved to be the best decision of my life…I went to see my doctor.

During my initial appointment my doctor decided my medical history indicated it was likely I had developed some kind of infection (sinus, ear, strep, etc.) while in NYC and prescribed a ten day course of antibiotics. I left thinking she was right and that I would feel relief in 3-4 days. However, after 4 days I actually felt worse and the headache episodes were more frequent and more severe. So, at risk of losing my man card, I went back to the doctor and told her my gut said I didn’t have a routine infection. She reviewed my history and noticed I had played football and rugby for almost 20 years and suspected I might have some concussion related issues with my brain and wanted me to have an MRI right away. Unfortunately, I was in an HMO and needed prior approval to get the MRI. Then my doctor, who is my hero, said I’m writing the order anyway and if your insurer won’t cover it, I will.

Order in hand, I went to the local hospital and had the MRI. Less than 2 days later, on a Saturday morning, I got a message from my doctor telling me to call her right away and then she left both her mobile number and her home phone number. I knew before I called her it wasn’t good news because I’d never had a doctor leave me their personal numbers before. When I called, she answered right away and said the radiologist who read the MRI said my brain was fine (words that later became huge laugh for my friends), but that I had a large mass (about the size of my thumb) in my neck that he suspected was cancerous. He recommended an immediate needle biopsy and referred me to a doctor who could see me right away. Not surprisingly the biopsy results showed the mass was a cancerous tumor that was malignant and wrapped around my carotid artery. As it grew it was squeezing the artery and restricting the blood flow to parts of my brain causing the severe headaches.

The real kicker was that I had a squamous cell HPV positive tumor which I learned came from the same virus that gives women cervical cancer.
Since the virus can be dormant for 40+ years there would be no way to know who passed it to me. It could have been anyone I “knew” since literally high school.

At this point I was referred to a team of doctors comprised of a head and neck surgeon, a medical oncologist, and a radiation oncologist. My first appointment was with the surgeon since the traditional approach is to remove the tumor then follow up with radiation and chemo. I was shocked when my surgeon said he couldn’t touch my case since the tumor was wrapped around my carotid artery and there was no way he would try to cut it out. Apparently my tumor was in a place nobody had seen before. Lucky me.

Instead my first surgeon referred me to another surgeon who everyone told me was the superstar in head and neck cancers, but when I eventually met with him, he said the same thing. He did do an exploratory procedure to see if he could find the cells that were the source of the tumor. He was successful in locating the mass of dead cells, but his exploratory surgery put me into the ICU overnight because I didn’t come out of the anesthesia easily. It was now about a month since my diagnosis and still no treatment plan. I was getting really nervous the doctors had no idea how to proceed.

The next step was for my team to take my case to what they call the Tumor Board, a collection of all the head and neck cancer specialists from all four major hospitals in the city. Turned my case baffled them so much when it was presented that it took two rounds a week apart for these superstars to come up with a treatment plan. Meanwhile, my anxiety was spiking and even with some great painkillers I still had some of the sudden attacks of severe pain.

I should point out the same week I was diagnosed with cancer the business I was running received an unsolicited offer from another company to buy us out. I told my partner and two key employees about the offer and my cancer and we made a plan how to proceed. However, a day later, before we announced either piece of news to the rest of the staff, my number two employee died in a traffic accident. So the staff meeting meant I had to let everyone know he died, I had cancer, and the company was being sold. WTF!

It took about 8 weeks for my team of doctors to come up with a treatment plan and even though I was busy with the sale of the business, I was freaking out from the waiting. The plan the doctors finally came up with was 35 intensive radiation treatments (daily except weekends) and 7 weeks of IV chemo (every Tuesday for 2 hour followed by my regular daily radiation treatment so Tuesdays really sucked). My first treatments began in mid-April and would end on June 1, 2017. I assumed I could get a somewhat normal life back on June 2nd, but I was wrong…really wrong. The radiation dosage was the maximum a doctor can administer and the chemo I received was an old systemic chemo often referred to as “Drano” because it attacks the cellular structure in your entire body in order to weaken the cancer cells enough for the radiation to work. As my radiation oncologist explained, “we’re going to have to almost kill you to save you “. Turned out he wasn’t lying.

I was fitted with a molded face mask with clips and target markings to wear for every radiation treatments. The clips attached to the treatment table so I couldn’t move and the target markings were for the radiation tech to use to be sure the radiation was targeting the tumor. I still have the mask and have it decorated to put out on Halloween to frighten people. The doctors also wanted me to have a connection for a feeding tube inserted before starting treatment since the radiation was going to burn my mouth, tongue, and throat so bad I wouldn’t be able to eat solid food during treatment. They were right. I ended up losing over 60 pounds and didn’t eat solid food again until about 2 weeks after my last treatment. I was able to swallow soup sometimes so I became a big fan of egg drop soup. I’ll spare the description of how the feeding tube worked, but let’s just say it wasn’t fun.

My treatments began the day before my birthday and about a week before my girl Judy was scheduled to go to Vietnam for 2 weeks with several of her friends. She agonized about going, but in the end I talked her into going because there was nothing she could do if I felt like shit and if I didn’t, she’d forever regret not going. In the end we compromised and I found someone to drive me to/from treatment so she wouldn’t have to worry that I was driving myself. Of course, I was still driving myself to the office for 2-3 hours every morning to move the sale along since I usually felt fine in the morning and treatments were early afternoon every day.

Since I couldn’t talk on the phone because the damage to my vocal cords from radiation made speaking very painful, I set up a Facebook group to share my progress and feelings about treatment with my friends…and even a few enemies. Today I find it difficult to reread what I wrote in my “journal” without tearing up.

As the treatments went on I felt worse and worse and even got to the point where I wanted to just stop. Fortunately, my radiation oncologist predicted I would want to stop before I started even treatment and made me promise when that day arrived I would keep coming. My “want to quit” day arrived in week 6…and I kept my promise and went back for my last 3 treatments. When I completed treatment half of my neck and face looked like I walked through a blow torch and inside my mouth my tongue, cheeks, and throat looked like I had been drinking molten lava.

Due to the delay in starting treatment I had to cancel plans to attend my 45th college reunion in Yale, which ironically started the day of my last treatment. Unbeknownst to me some of my friends conspired to bring the reunion to me. One person went to the print shop and blew up a photo of me wearing a tuxedo at my son’s wedding and brought 2 copies to the reunion so “flat Brian” could share in all the festivities. I received numerous texts over the 3 days showing me at the registration desk, on the dance floor, at the class dinner, and even with the campus police. Needless to say it was very emotional for me to feel the support from so many people thousands of miles away.

Simultaneously, a friend from a class ahead of me called and said he was in town and wanted to stop by to visit. Reluctantly, I agreed even though I looked and felt like shit. About an hour later I heard voices outside and when I peeked out the window I saw a group of men getting out of a van and I immediately assumed it was the usual group of Jehovah’s Witness members going door to door to give testimony. I told Judy not to answer the door and ducked out of sight. The doorbell rang and Judy told me to look to make sure it wasn’t my friend. When I did, I saw my friend on the doorstep with a small group I didn’t recognize. When I let them in, I realized it was the Whiffenpoofs from the class of 1976 (a year before me). They explained they heard I needed a boost so they decided to come by and give me a private performance. This is how it came to be that the Whiffs from 1976 were sining in my living room in San Diego at the same time the Whiffs of 1977 were singing at the class reunion in New Haven I was missing.

Less than two weeks after my last treatment, I was able to eat some solid food (a kid size cheeseburger) for the first time in 3 months. Once I was able to eat solid food regularly I got the feeding tube removed and began the journey to find my “new normal”. The radiation treatments paralyzed one side of my vocal cords so I had to learn to speak differently to project my voice so I could be heard and understood. I also had to deal with (and will have to forever) my salivary glands being damaged along with scar tissue restricting my ability to open my mouth wide and chew. Today these “inconveniences“ are just good reminders of where I’ve been.

In the almost 8 years since my last treatment I spent my time getting healthy, both physically and mentally. I resumed working out. I started mentoring people who got the same diagnosis (squamous cell HPV+) and need someone to guide them through treatment and, hopefully, recovery. I started doing more volunteer work with the homeless and with a shelter for abandoned dogs. The time I spend volunteering reminds me there are others who have it much worse than I did.

This is not to say there haven’t been a few anxious moments when something showed up on a scan that needed checking or when my dermatologist found a growth that looked like melanoma and needed to be removed surgically and biopsied immediately (they got good margins so all clear). I also cringe whenever I hear someone I know has cancer because I know how devastating that news can be.

At the end of the day I feel very lucky I survived and, oddly, very grateful for having experienced cancer first hand. It has forced me to look at my life and focus on living a better life to honor those who aren’t as lucky and don’t survive.