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_{Bob Dylan – “Most of the Time” (1989)}

I altered the penultimate line above to better reflect my personal experience through all of this. Bob (who is a premium subscriber to this blog) won’t mind after he reads this post in its entirety. I love that song. It appears on his album “Oh Mercy” but also on the “High Fidelity” soundtrack. I have that soundtrack on CD and used to beat it up, listening to it a lot when I was driving any one of my busted Jeep Wranglers (when the CD player wasn’t skipping IYKYK). And I still spin it to this day. When I worked at a restaurant called Joe Mama’s in the Oakland section of Pittsburgh we watched that movie a lot at the bar. Sunday Night Movie Night. Maybe 2001. I’d work, clock out, and then grab a stool next to a regular or someone new who ultimately would become a regular. We had two smaller TVs that bookended the horseshoe-shaped bar and we watched VHS tapes on Sunday nights. There were no smartphones and no texting. No one really on mobile phones, actually. It was a special place. And time. I miss those nights. Also I’m old.

Diagnosis:

Picture it: Late May, 2026. After a bunch of scans and inconclusive tests, I finally have surgery on a Wednesday to remove whatever mass has developed along the left side of my neck. Initial thoughts indicated it was a parotid gland that needed to be removed, which is a difficult and delicate surgery. It dances around the facial nerve, which brings the potential for permanent facial nerve damage. You can Google image “parotidectomy” but be sure to do it at least 8 hours before your next meal and at least 14 hours after eating. With this diagnosis comes about a 20% chance of cancer. We didn’t really discuss any alternative outcome to this, but my ENT and I agreed that he’d essentially get under the hood, see what had turned rotten inside of me and get it the heck out. It was a 30-minute surgery. My ENT explained to my wife that the surgery went well (I was all goofed up) and that he indeed removed a necrotic lymph node. Had I been more educated on the subject, this would’ve been a big red flag. It would be sent for biopsy, but otherwise he said everything else looked good. My neck incision was very… visible. Ha. For premium subscribers of this blog, like Bob, I’ll be sharing the photo exclusively with them on my personal medical surgery scanned images website OnlyScans…

Recovery? I’ve had worse hangovers. In fact two days later on Friday my wife and I went out to dinner to celebrate friends who just got engaged that day. I wasn’t going to drink alcohol but then I realized that was a big fat lie, so I had a few. Then my friend, who is the groom-to-be, opened a bottle of High West A Midwinter Nights Dram to further celebrate and I had probably 7 more. I guess there was some sense of relief after surgery (medical professionals would probably link that feeling to the pain medication). I actually felt at ease for the first time in a few months. Months of anxiety had been dismissed in an evening’s time.

We went home at a responsible time like 10 PM ET (see above re: being old). I was getting ready for bed when I checked my hospital app and noticed a message. So I read it. And I see the words “sorry” and “unfortunate” and, of course, “cancer.” An app. On a Friday night. Telling me I have cancer. I won’t dive into detail here (yes, I was in the bathroom) but I just stared at the mirror. For those who have received similar communication, whether via an app or in-person, my heart goes out to you. It’s a very arresting moment – somehow both numbing and emotionally charging. It’s a memory unlike any other. It is bizarre and ineffable trying to describe how heavy this invisible weight felt when it suddenly slumped onto my shoulders. After what seemed like 20 minutes of just staring at the mirror, it was time to tell the wife. Or not tell her. Don’t know. I stepped out of the bathroom, turned into the bedroom, my wife was in bed and she looked at me and immediately asked “what’s wrong?”.

Treatment: Surgery and Chemoradiation.

Surgery was scheduled to biopsy parts of my mouth, specifically the tonsils, tongue and the nasopharynx (I have no clue what this is but it has nothing to do with Egypt or a similarly named metal band that I saw at the Smiling Moose on Pittsburgh’s South Side). I waited three weeks. What I also didn’t know was that a biopsy of a tonsil is really just a tonsillectomy. So, that’s what I had done. Once again my ENT performed some quick work. He said he noticed the left tonsil was abnormal and hardened so he removed it. That tonsil would be sent off for biopsy and ultimately would reveal the tumor. By the way – initially I was flagged for having an unknown primary tumor which led to these various appointments and surgeries. 5% of all head/neck cancers have unknown primary tumors. That’s me. So of the ~15,000 new cases of similarly diagnosed head/neck cancers in the US each year, less than a thousand have an unknown primary tumor. Time to buy a Powerball ticket! And tonsillectomy recovery? Solid way to lose weight and your sanity. It was brief torture, with emphasis on both “brief” and “torture.”

The word “chemotherapy” sent me sideways. It was a 15-minute conversation with my medical oncologist. First time I met him. Like a speed-dating experience (I gather). He mentioned side effects like ear ringing, loss of hearing, neuropathy, nausea & vomiting, kidney issues, loss of taste, hair loss etc. The list goes on. Short-term, long-term, and permanent. That I’d need a port in my chest to administer the chemo medicine and a feeding tube inserted into my gut when eating became too difficult due to nausea, sickness, loss of appetite and inability to swallow solid foods. All in 15 minutes. Shook hands and departed. I wouldn’t see him for another 2 months. The hell. I didn’t even know what a medical oncologist was prior to this appointment.

Which leads me to a topic I should’ve covered earlier: no one manages the entire treatment plan. I have nurses and doctors who specialize in chemotherapy and those who specialize in radiation and those who specialize in nutrition or PT or mental health etc. But there isn’t anyone over the top. Not a person who can walk you through this journey across all towers/services. A-to-Z. Not for me at least. Except for survivors. “Look for the helpers.” I’m blessed to have a friend who went through a similar treatment plan just shortly before me. His friendship and coaching has kept me very balanced and realistic, if not optimistic. I’m grateful for that. And I’m paying it forward to another friend of mine who recently received a similar diagnosis and is going through the same treatment that I am now, just a few weeks behind me. It actually helps me to speak to him about what I’m going through as well. But the takeaway: be your own advocate. Project manage your treatment. I have an Excel file (surprise!) with like 17 tabs tracking everything. I’m rambling now but I’ll give some examples in another blog as to how being my own advocate has proven useful.

Back on the rails…

I got several 2nd opinions. Primarily for chemotherapy. Four, actually. And they were split: 2 to include chemotherapy for optimized results and 2 who felt it wasn’t necessary to put my body through all of this. I felt like if I got 80 opinions it would be split 40/40. So ultimately I relied on my network of friends. A mix of folks who are survivors or who work in the field and have some recent experience. Yet another tough decision, but ultimately chose chemoradiation.

The radiation portion was generally agreed upon by all with whom I discussed. There were some slight discrepancies on the number of radiation treatments, but ultimately not much. Can we talk about the mask? It’s not nightmare fuel, but…

Like many things, I’m used to it now. It’s a quick routine. It’s every weekday morning (cancer rests over the weekend in case ya didn’t know). Let’s jump into the numbers and plan:

The Plan:

• 33 radiation treatments, executed every weekday morning
  • After the first few appointments, this turns into a 10-minute exercise; it takes longer to drive to the hospital
• 28 red light therapy treatments (missed Week 1 due to scheduling issues)
  • Similarly to radiation, this is 5-10 minutes
• 7 chemotherapy treatments, executed every Monday following radiation
  • This is roughly 4-5 hours
• Bloodwork
• Preventative dental upkeep
• Nutrition and weight management
• Appointments (35 and counting)
  • I’m unsure of the actual post-treatment plan so far, but I know there will be scans, tests, follow-ups and whatever else may be needed over the next 3 months, 6 months, one to two years and then ultimately ongoing.
• Lastly, after several consults with my treatment team, I opted against the feeding tube. We shall see if that was the right call, but for now I feel that was the right decision.

Next up: if you’re still interested, we’ll give some recent updates. Overall, I feel blessed, loved and fortunate. Most of the time :).