I could well imagine that I might have lived in former centuries and there encountered questions I was not yet able to answer; that I had to be born again because I had not fulfilled the task that was given to me. – Carl Gustav Jung
One postscript about Kathleen. We broke up in 2006. It was painful for both of us, and tears flowed– first Kathleen, then me, but in my case, after I hung up the phone. In our final conversation, I apologized to her for putting her through the fails and tribulations of my illness, as well as the psychodramas and traumas that followed, which she was forced endure.
“No,” she said. “Don’t say that. I’m a better person for having known you.”
I had not been expecting that. Yes, it was a compliment, but it also made me sad.
In 2009, I was surprised– and somewhat shocked– when Kathleen’s name appeared in my Facebook feed– her new, married last name– and that’s how I found out she had gotten married.
Los Angeles has a different energy than New York. A quieter, more subtle, creative energy, less chaotic, but just as intense, a kind of omnipresent, unseen force. I compare it to the subterranean hum in Beneath the Planet of the Apes. Take a walk in the Hollywood Hills on a summer evening. There’s nothing like it. It’s eerie, supernatural, exhilarating. You can feel, well… something. Call it a vortex, call it the spirits of the Native American peoples who once populated the region, but there is a presence here. You can hear it in the blood-curdling howls of the coyotes, like they’re aware of something in the night that we can’t perceive.
Eleven long years after I was diagnosed with Stage I cancer– and cured through surgery– I was living in Los Angeles. Certainly, I was not the same man I was in 2004. Not better, and not worse– just different.
In 2010, I was driving down a busy street when a little kitten darted across the road. Many drivers noticed the kitty, and everyone stopped their cars to avoid running over him. I got out of my car– as did another driver– and we discovered that the cat had run under one of the stopped cars, a Jeep, and was hiding next to one of the tires. I scooped up the kitten, and took it home. I estimated it to be about 6 weeks old. Based on its markings, I originally thought that “he” was a “she”, and named it Zoey. However, after the “emergence” of certain facts a few weeks later, I discovered that “she” was actually a “he”. So, I changed his name to “Zooey”, after the Salinger character in the novella Franny and Zooey. (Salinger’s “Zooey” rhymes with “phooey” and not “Joey”). However, I was so used to calling him Zoey by then that the Zooey name change just didn’t take. So, I’ve been calling him Zoey ever since. I hope I haven’t given him a complex.
Zoey had a habit of putting his wet nose on my lips when I fell asleep at night, which I did not like, being a bit of a germophobe when it came to my mouth, precisely because of my previous cancer experience. So, to remedy that situation, I started sleeping on my left side, with my mouth against the pillow.
Now we’ll step into a time machine (a DeLorean, no doubt) and fast forward five years later.
In the late Spring of 2015, I was awakened in the middle of the night by a horrendous, sharp pain on the left side of my tongue. I hadn’t experienced anything like that before. It felt like one of my teeth had embedded itself into my tongue.
Maybe I was in denial, but it never occurred to me that this could be related to another tongue cancer, despite the fact that the pain was in the exact same location it had been in 2004. One of the reasons I didn’t think it was cancer was because the pain was of a completely different type. And although the pain became progressively worse over the ensuing weeks and months, I thought it might have been caused by some sort of acid reflux.
Eventually the pain became so bad that I could hardly eat. My speech was also affected, because I was constantly trying to avoid having the left side of my tongue abrade against my teeth.
By August of 2015, the pain had become intolerable, so I called Dr. Dennis Kraus (my original surgeon at Memorial Sloan Kettering Cancer Center in 2004) and asked him if he could recommend a doctor in the Los Angeles area. He referred me to Dr. Ellie Maghami at City of Hope Medical Center. But Dr. Maghami was not available that week– I think she was on vacation. So, I saw one of Dr. Maghami’s colleagues instead, Dr. X.
Dr. X looked at the sore on my tongue and said that it appeared to be an ulcer.
“I don’t think it’s cancer,” he said, “but I can do a biopsy if you want some peace of mind.”
Since Dr. X had also suggested that I get fitted for a bite guard the following week (he felt that the problem may have been caused by my left molar abrading into my tongue at night), I decided against the biopsy. I thought that having the bite guard fitting done so soon after a tongue biopsy would be too painful. And besides, Dr. X had said that he didn’t think it was cancer.
Six more weeks went by. The pain got worse, and I again called City of Hope. I spoke with Dr. Maghami’s staff, and they suggested I come in as soon as possible.
This time, I was able to see Dr. Maghami. She visually inspected the sore on my tongue and told me that it probably was cancerous.
I was shocked. Dr. X had seemed pretty sure that it was not cancer. But Dr. Maghami appeared just as certain that it was. And, it did make sense– what else could be causing such horrendous pain?
Having learned from my experience in 2004, I did not panic or freak out, but I did become depressed. There was a chance I’d have to go through another arduous cancer ordeal. But I still held out hope it could be something else.
She took a biopsy, and I anxiously waited for the results…
Someone once said that our greatest hopes and our worst fears are seldom realized. But for me, lightning was about to strike twice: I was informed a couple of days later that it was indeed a squamous cell carcinoma.
It was not a recurrence of the cancer I had in 2004. This was a new cancer that had arisen independently.
In 2005, I had spoken with a therapist about my cancer experience. He asked me if I ever had thoughts like, “why did this happen to me?”, or “why did I deserve this?”. I told him quite honestly that no, I never thought that way, that the tongue cancer was just something unfortunate that happened, but that I never wallowed in self-pity.
This time, though, it was different. How in the name of all that is holy could this have happened twice? Was I cursed? Was I being punished? Was I punishing myself? And how did this happen? Every behavior I had engaged in over the last several months became suspect. Earlier in the year, I had used Crest White Strips– the first time in 10 years I had used a teeth bleaching product. Could that have been the cause? Or what about the mouthwash I had been using? They told me in 2004 that going forward, I should never use a mouthwash that contained alcohol, but back in January I had started to use a mouthwash with alcohol. Did I have oral sex with the wrong girl? Or maybe it was that molar that had always caused me trouble– the one that needed protracted root canal back in 2013. I have a narrow pallet, and it could have been rubbing against my tongue– maybe exacerbated by the fact that I was sleeping on my left side (that darn cat!) Or maybe, everything I mentioned combined to cause the ultimate tongue cancer cluster fuck.
I believe in reincarnation, and that after we die, our souls are reincarnated into other people so that we can learn lessons, lessons that we did not learn in our past lives. I believe that I was supposed to learn a lesson from my first cancer experience in 2004, but did not. As a result, some unconscious force, perhaps the ultimate mystery of the universe, either within or without, was giving me cancer again so that I would have another opportunity to learn that lesson. This is what I was thinking.
As I prepared to have a PET scan to determine the cancer’s extent, I gathered my “brain trust”– my brother Joe, my brother-in-law Paul, and my significant other, Chalon, to help me deal with the findings that would come from the imaging.
Chalon (name pronounced “shə-LON”), a native Californian, was named after a street in Los Angeles, Chalon Road, which is located in the hills of Bel Air off of the 405. And as her unique name may indicate, Chalon travels to the beat of a different drum.
Chalon, Joe, Paul, and I met with Dr. Maghami after the PET scan results came in. The news was not good. The results indicated that the cancer had spread to at least one lymph node on the right side of my neck, likely with an extracapsular extension, meaning that the cancer likely broke out of the lymph node. It was also considered Stage III, due to the size of the mass.
I was told that I would have to have half of my tongue removed, and that I would certainly have to have radiation treatments after the surgery.
They would reconstruct my tongue by taking skin from my left wrist. My left wrist would in turn be covered with skin taken from my left thigh.
We decided that we would seek a second opinion at UCLA Medical Center. We met with head and neck surgeon Dr. Eliot Abemayor, who confirmed Dr. Maghami’s findings and recommended a similar course of treatment. He also noted that the cancer was curable. The question then, was whether to have the surgery at City of Hope or UCLA.
While I was very much drawn to what I considered to be City of Hope’s comforting, gentle, and mellow vibe, I concluded that UCLA had the resources to provide me with interdisciplinary, collaborative team care, along with access to many different specialists if needed– specialists outside of the cancer field.
Accordingly, I decided that I would have the surgery at UCLA.
Dr. Abemayor also recommended that I have hypnotherapy prior to my surgery– he believed that it would assist in my recovery and healing. He referred me to Charlene Williams, PhD., who I met with twice at her office in Brentwood. During my sessions with Charlene, I talked about safe places in my childhood, which she incorporated into a recording that I would listen to many times prior to my surgery.
Our residency program’s annual retreat was held the weekend prior to my surgery, Halloween weekend, 2015, in Long Beach. Every year, the retreat is a mix of leisure activities and presentations related to our work, usually held over one weekend. One of the activities was a karaoke sing-along, and, as was the case in 2004, I wondered if this would be the last chance I would have at singing normally. I had kept my cancer diagnosis– and upcoming medical leave of absence– pretty much on the q.t., and most of our residents and physician faculty had no idea what was going on with me medically. The only one I told was my assistant, Martha.
Martha is supposed to be my “assistant” coordinator at the program, but she holds a tremendous amount of influence. She is the program’s “Earth Mother” and has always known where all the bodies are buried (probably not the best metaphor to use when talking about a residency program, but it makes the point). I learned early on to let Martha be Martha and work in the manner she pleases. We’ve developed a special rapport over the years, and I consider her to be member of my family.
Getting back to karaoke night at our resident retreat, I sang “Carolina in my Mind”, doing my best James Taylor impersonation, sounding more like him than he does. The residents looked at me with their mouths agape. They didn’t know I could sing. The next day, I had to give some kind of PowerPoint presentation– I can’t remember about what– and managed to get through it, all the while being distracted by the fact that I would have this major surgery the following week.
A few days after the retreat, Chalon drove me to UCLA Ronald Reagan Medical Center in the cold, wee hours of an early November morning. I checked in, signed some forms, and was taken to the pre-op area. I got undressed, put on the hospital gown, and placed my personal items into a plastic bag. I got into bed, and they started an I.V. The anesthesiologist came by, and asked me to sign some additional forms. Dr. Abemayor stopped by, and I also think Dr. Keith Blackwell, who would be doing the actual free flap reconstruction of my tongue.
I told all of the doctors that I preferred to be provided with a G-Tube, rather than the dreaded nasogastric tube that had caused me so much misery in 2004. The G-tube would allow me to have liquid nutrition poured directly into my stomach after the surgery, when it would be impossible for me to take in nutrition by mouth. The doctors agreed that they would insert the G-Tube during my surgery (or shortly thereafter).
I anxiously waited for one of the nurses to tell me they were ready to take me in.
I said goodbye to Chalon as they wheeled me into the O.R. They administered the anesthesia through the I.V, and I could feel it taking effect… I drifted off into unconsciousness, not thinking about what would happen when I woke up…