2004: A Trip to the Unknown

Kathleen and I had corresponded almost exclusively by email for several weeks, but since she traveled quite a bit for work, we had to wait a while before actually getting together for our first date. We planned to meet at a restaurant on First Avenue, somewhere between 51st and 53rd Street in Manhattan. Tonight would be the Big Night.

I was wearing jeans, an oxford shirt, and a navy blazer, and arrived about 5 minutes before she did, waiting outside the front door of the restaurant. As she appeared from around the corner, I noticed that her long, blond hair fell all the way down below her waist. She wore a casual, dark outfit, and had an athletic look about her. I thought she was beautiful. I approached her with the intention of giving her a hug, but at the same time, she extended her arm to shake my hand.  I can’t remember whether we hugged or did the handshake. We went inside and were seated at a rather large table– in retrospect, too big for just two people, and she seemed far away as we looked across from each other.

Kathleen recommended the steak salad, which we both ordered, and they brought us a bottle of wine. It had only been two and a half years since 9/11, and the events of that day still held a heavy presence in the consciousness of every New Yorker. Throughout dinner, Kathleen told me many stories of how that day affected her– people she knew who died, others who survived but were forever changed, including first responders. I have to admit, though, that my primary goal that evening was to impress her, so my own choice of conversation focused on subjects for which I had a great deal of enthusiasm in those days– comparative religion, Jungian psychology, Tristan and Isolde, Don Quixote, the list went on. I told her about my recurrent apocalyptic dream in which I’m walking down the east side of what was once the Hudson River, but what was now a dried up river bed except for a few patches of wet mud. I approach the George Washington Bridge from the north as molten fireballs streak across the sky– the last remnants of the final war, of which I am the sole survivor. 

Now you would think, after being subjected to that kind of intense lecture on the first date, most women would have excused themselves to go to the bathroom and never returned. Or maybe, as I write this, I’ve just been living in Los Angeles too long. In any case, fortunately for me, I was sure that Kathleen found my pseudo-intellectual caterwauling to be at least somewhat entertaining. By the time we ordered dessert, we’d been sitting at the table for 3 hours. After I got the check we moved to the bar area and had another drink. We continued chatting there, but by then I was focused more on how beautiful she looked than on anything else. It was getting late at that point, and I think the restaurant was about to close. I asked her if she wanted to go to a bar somewhere for another drink, and she said sure, there was one right down the street, a couple of blocks south of the restaurant.

The bar was dark and noisy. We sat down on a bench, this time, very close to each other, and ordered apple martinis. I was already buzzed from the drinks I’d had at the restaurant, so after a couple of martini gulps I was feeling more than happy (as was she). As we talked, we engaged in some affectionate physical gestures– holding the other’s hand as we made a point, touching the other’s arm or leg, but only for a second or two, just enough to show we liked and felt comfortable with the other, but not pushing it, just in case. We were already in sync that way.

I’m not sure if we left the bar because it was about to close, or if we simply decided to leave. I was pretty smashed, and in no condition to drive home. I asked her if I could crash at her place and she said yes, I could sleep on the couch. She lived on 52nd Street off of First Avenue, which was close to where I’d parked. I told her I had brought an overnight bag “just in case”, and we stopped off at my car to retrieve it. We went up to her apartment, which was located in a lovely building, and she gave me a tour. The apartment had a very warm feeling to it, was well-furnished, and tastefully decorated by someone who obviously knew what they were doing. She opened a bottle of wine and we sat down on the couch. She asked me about my past relationships. I didn’t ask her about hers, but she volunteered anyway. She lit some candles, turned down the lights, and put on some music– I think it was a Diana Krall CD– and I asked her if she wanted to dance. She nodded yes. I put my hands on her hips, and I led, taking very small steps, barely lifting my feet off the floor, which resulted in us eventually going around in a circle.

After that night, we were inseparable, and I had a girlfriend.

Two months later, on Friday, May 28, 2004, I was getting ready to drive to Delaware County, New York with Kathleen to visit her folks. It was Memorial Day weekend. I was about to make a phone call that would change the course of my life.

I had been experiencing severe pain on the left side of my tongue for many months– even dating back to the previous summer– and had seen my dentist about a month before, hoping that he could determine the cause and stop the pain. After looking at my tongue, the dentist said that he didn’t see anything that looked especially amiss, but recommended, out of an abundance of caution, that an oral surgeon do a biopsy. I went to the oral surgeon, who took a biopsy– but I hadn’t heard from his office in 3 weeks, and I needed some codes for the insurance forms I was filling out.

I called his office late afternoon Friday, just before I was about to leave to pick up Kathleen. The receptionist answered and I asked her for the insurance information. I didn’t even ask her for the biopsy results because it never occurred to me that anything could be seriously wrong. I was still young, and of course, immortal. The receptionist said she would transfer me to the doctor.

“Hi, Dr. X, I need some insurance codes for that procedure you did a few weeks ago, and that’s why I’m calling. And I assume everything went okay with the biopsy?”

“Actually, no,” he said. “It’s quite serious…”

In the nanosecond following the words “actually, no”, my entire biochemistry was altered, down to the molecular level, I imagine. It was a feeling I’d never had before, like I was having some kind of out of body experience. I imagine it’s the same feeling people have when they know their plane is going down.

“What is it?,” I managed to respond.

“I don’t want to tell you over the phone. You should come in.”

“Why can’t you tell me now?”

“I don’t want to tell you over the phone. You need to come in.”

“Is it cancer?”

“I don’t want to say.”

“Will I have to have my tongue removed?”

“I don’t know.”

“Am I going to die?”

“I don’t know”.

For any doctors or patients who are reading this, I can assure you that this is an accurate description of how our conversation went. It was also, unfortunately, my first introduction to the healthcare system with a cancer diagnosis. At the time, I knew nothing about cancer, nothing about staging, nothing about treatment options. I just assumed that I had cancer and that I was finished.

I called my brother Joe, and told him that I was going to die, that it was all over. Obviously, he became quite upset. Fortunately, Joe’s partner (now husband) Paul is a radiation oncologist, and upon hearing the news, endeavored to put the situation in perspective. He explained that it might not be as bad as I thought, that I was jumping to conclusions too quickly, that I would need to have a PET (positron emission tomography) scan to see the extent of the cancer, and that these things could be treated.

I called Kathleen, who was in the process of packing for the trip. She reacted calmly, called her folks, and told them we would have to cancel our visit. The plan now was for me to go to the oral surgeon’s office with my folks, and Kathleen would meet us for dinner later that evening.

The oral surgeon advised us that the lab report had indicated a squamous cell carcinoma in the tissue samples he’d taken from the left side of my tongue, and that the situation was now “out of his hands”.  Why he couldn’t tell me that over the phone remains a mystery to this day, but it may have been a reflection of his own ignorance. In the meantime, Paul had received a copy of the lab report and had somehow managed to get me an appointment for the following week with Dr. Dennis Kraus, a head and neck oncology surgeon who at the time was affiliated with Memorial Sloan Kettering Cancer Center in New York.

That evening, I had dinner with Kathleen and mom and dad. There was little discussion about my diagnosis. Instead, the three of them appeared optimistic, in good spirits, laughed on occasion, and engaged in conversation about everyday subjects, as if nothing out the ordinary had occurred. Perhaps this was intentional, but I remained terrified. As they talked, I stared into space, fearing the unknown consequences of a squamous cell carcinoma, and whether I would survive. It was my first experience with the “altered state of consciousness” that I would experience on a daily basis some 10+ years later.

Over the next few days, I remained mostly in a fetal position in my bed, too anxious and/or depressed to work, function, or communicate with anyone. It was as if some kind of switch had been turned off. I had a PET scan the first week of June and an appointment with Dr. Kraus a couple of days later. I remember Kathleen walking in to the waiting room with that confident manner she had, her hair perfectly done, and thinking, “I can’t believe I have to put her through this… it’s a miracle she’s still here…”

Dr. Kraus advised us that the PET scan confirmed “a small cancer on the left side of my tongue”. I would have to have part of my tongue removed.

“How much?”, I asked.

“About 15%”.

That was devastating news, because I knew that my ability to sing would be affected. I had literally been singing my entire life. It was part of my identity, and gave me more pleasure in life than anything. In fact, singing was my identity.

I’d been a member of some prestigious singing groups, like the New York All-State Chorus, the All-Eastern Chorus, and the Tufts Beelzebubs.  (I also did stand-up comedy as a member of the latter and was known for having a distinctive speaking voice.) My singing— often with guitar in hand– was also my most effective tool of seduction, my method, my modus operandi. It didn’t always work, but when it did, the sky opened and the earth shook. I wrote songs, and played the piano and guitar as a way to accompany my singing. Even though the surgery would have no effect on my vocal cords, it would still affect my diction and ability to pronounce words, which as any singer can tell you is all a subtle and essential part of the art. 

And this is what was going through my head: In 1974, my elementary school teachers would send me from classroom to classroom so that I could entertain the other kids with my impressions of celebrities. At about the same time, my folks took me to see the movie That’s Entertainment. It was a peak experience in my young life, for I responded to that event with awe, excitement, and inspiration. I thought to myself, “This is what I want to do with my life… I can do this… I can sing, I can be in the movies… I can entertain people…”. I was convinced that was my destiny. (Very recently, I read an interview with Conan O’Brien in which he talked about his own experience in seeing That’s Entertainment for the first time in 1974. His reaction was very similar to mine, and since we’re exactly the same age, I’m sure we both saw that movie at around the same time.)

There was some debate as to what could have caused the cancer, but the leading opinion at the time was that I had been using a poorly constructed plastic teeth bleaching tray that had been cutting into my tongue for years, causing a significant amount of carbamide peroxide to enter my tongue. I never smoked, was not a heavy drinker, and later pathology results indicated that the cancer was HPV negative. I had become obsessed with having the whitest teeth possible, and insecurity and/or vanity has a way of coming back to hurt us when we are out of balance.

Kathleen and my entire family– including several aunts and uncles, walked along side me as they wheeled me into surgery sometime in late June. Tears came to my eyes as I thought about losing part of my tongue. It was the first time tears flowed since I was homesick at summer camp. 

When I first got on to the operating table, I looked to my left and saw a nurse sitting in front of a tray of surgical instruments. She was already wearing a mask, and looked back at me. Then more of the team appeared. They covered me with some kind of warming device/blanket, and that is all I remember before waking up.

When I awoke from surgery in the recovery area, it was obvious that my brain chemistry had been affected by the trauma inflicted on my body while I was unconscious. I awoke in a deep, dark, depression, the bottom of a psychological abyss I had never experienced before. It was as if every molecule in my body had been shocked and saddened at what had happened to my tongue while I was under anaesthesia. My special tongue, as I thought of it, which had always allowed me to express myself in so many wonderful and rewarding ways.  To make matters worse, I was completely alone. There were no nurses, no staff, no Kathleen, and no family, the latter who were either in some other part of the hospital waiting for me to wake up, or were at home, planning to come see me later in the day.  At some point I needed to call a nurse– for what, I can’t remember. When she answered the buzzer, I tried to speak, but couldn’t form any intelligible words. All I could do was make some noises that sounded like I was talking with a mouthful of marbles.  I couldn’t pronounce any consonants– think of the Boris Karloff monster in Frankenstein. The nurse expressed frustration with not being able to understand me, and throughout the next few hours– or what seemed like hours– I kept buzzing her at the nurses station trying my best to communicate.  At one point, I got yelled at for calling her too much. And I thought, “Where is her empathy? She’s an oncology nurse! Doesn’t she understand what I am going through?”

I had a feeding tube threaded up my nose and into my stomach (they call it a nasogastric tube), which I would have to use until I could eat, chew, and swallow on my own. I also had a handy PCA pump button I could press, to deliver a nice dose of morphine when I needed it. 

Later that evening, I freaked out because I couldn’t urinate (due to the anesthesia), and dreaded the thought of having them shove a catheter up my Johns– uh, I mean urethra, which they eventually had to do. Here’s a tip– if you can ever avoid having a plastic tube pushed up your tallywacker while not under anesthesia, I would say, try to do so. The only thing worse than having the catheter put in is having them pull it out.

I don’t remember having visitors until sometime after the catheter episode. Joe and Paul came in from California to join the show, and I saw them later that night, along with mom and dad, my brother Matt, and Kathleen. It was the first time anyone in the family had been diagnosed with cancer or had invasive surgery, so it was a new and scary situation for everyone. Paul was an especially effective “secret weapon”. Since he was a medical doctor– and an oncologist to boot, I made sure that every medical decision, labs, notes, everything, was run by him. I insisted that he be given carte blanche to review every order in my case as a second layer of review, just in case. It was a smart decision.

A couple of days after the surgery, Paul came by and noticed me sitting in a wheelchair, staring out the window. He noticed that I appeared completely “out of it” and was literally drooling. He wondered if I’d had a stroke, and asked the nurse what was going on. She told him that they had put me on a certain medication, which Paul immediately recognized as an anti-psychotic.

“What for?”, he asked.

“Oh, we put all of our head and neck surgery patients on this drug, it’s standard protocol. It calms them down.”

He told them to stop the drug immediately, which they did. My own view is that they gave this drug to the patients in order to shut them up, so the staff wouldn’t have to be bothered with any justified anxieties the patient wished to express, which may have resulted in unwanted behaviors such as calling the nurse one time too many. 

After coming off the medication I became much more lucid, and was able to organize my thoughts. I was informed that Dr. Kraus had indeed removed about 15% of my tongue as anticipated, and that a neck dissection and analysis of the lymph nodes confirmed that the cancer had not spread. I think I also learned sometime at that point that I would not have to have radiation or chemotherapy.

At about that same time, Kathleen had to leave for a couple of days to go to Houston, Texas. She had an important work assignment at the Major League Baseball All-Star Game that she could not miss. When she returned, she brought me a nice surprise– a Build-a-Bear baseball player.

And then, towards the end of my stay, I had what can only be described as the roommate from hell.

He would say terrible things to the nurses, and the doctors didn’t like him. None of the staff wanted to be near him, and even the phlebotomists and people who served him his meals dreaded having to have any contact with him. He complained about everything, and whenever a nurse attended to him in any manner, an argument was sure to follow. When I had visitors on my side of the room, he complained that they were too loud, even if it was in the middle of the day. He, of course, never had any visitors. I never knew his name.

From what I had been told, earlier in his life he had been a jockey, and a very heavy smoker. And, based on what I could overhear from his conversations with the doctors, his cancer had metastasized to the point where he had no hope of survival, and only a few months to live. One of the doctors- in a tone I remember as lacking any emotion or compassion– told him that he should consider using the next few months as an opportunity to “make amends” with the family members he had alienated. He told the doctor that his son, in particular, was not speaking to him.

Later that same day, Kathleen came to visit. It remained very difficult for me to speak. I still had the nasogastric  feeding tube threaded up my nose and into my stomach, and my tongue remained very swollen. Accordingly, Kathleen and I would communicate with each other by writing on a yellow legal pad. “What a horrible man your roommate is”, she wrote. “I’m so sorry you have to have him in here”. But I wrote back, “Let’s not condemn him for the way he is. Anyone who talks that way and behaves like that must have had a terrible life, and a particularly difficult childhood. We should react to him with compassion.”. She read my note, and simply smiled, but I could tell that she did not agree.

Now it just so happens that one of the effects of the surgery was that I could not swallow my saliva. In fact, I could not swallow at all at that point. As a result, the only way to get rid of the saliva that was constantly being produced in my mouth was to either spit it out, or to have it removed with a suction tool. I preferred using the suction tool, but sometimes I would simply spit out into a plastic cup. When I did this, the repeated friction of my very dry lips against the cup would cause them to blister. I had also developed a fungal infection on my tongue.

The evening following my legal pad exchange with Kathleen, the fungal infection– combined with the saliva build-up– caused me to begin coughing uncontrollably. The feeding tube was also causing a painful sore throat. I could not fall asleep, even for just a few minutes of rest. I twisted and turned in my bed, trying to find a position that would offer some physical comfort.

I kept the light on on my side of the room, because it offered some solace against the long hours of the dark night. I couldn’t stop coughing.

“Jesus Christ”, I heard my roommate say. “Can you please turn your light off?”. Then he called the nurse. “Can’t you tell him to be quiet?”, he asked the nurse, referring to me. His comments continued throughout the night, and he would audibly sigh every time I coughed. It was almost as if– even in his terminal condition- he was looking for some type of “fix” in the form of an emotional response from me or the nurses.

At about 4:00 AM that morning, I had reached my breaking point. I got out of bed, took my stand with the I.V. and morphine attached, and walked as fast as I’d ever walked before into the hallway. The nurses all turned to look at me– I think I must have been walking faster than anyone they had ever seen on that floor. And then the tears came. Not tears of defeat, but tears of anger and determination.

I dabbed my eyes with a Kleenex as I briskly walked with the I.V stand and said out loud, “there is no way I’m going to let this bastard keep me down.”. I walked about two laps around the head and neck floor, then stopped at the nurses station. “What time is the doctor coming in this morning?”, I asked one of the nurses. My speech was terrible, and still could not pronounce any consonants. “5:30,” she said. “I want this feeding tube taken out right now,” I said. “Can you do it?”. “No,” she said, “only the doctor can do it”.

It may have been the longest hour and a half of my life up to that point. I watched the minute hand slowly move around the clock on the hallway wall, went back to my bed for a few minutes, then came back into the hallway. At 5:30, one of my doctors stepped off of the elevator. He was a native of Scotland, and had a pronounced accent. I walked up to him and said, “You have take out my feeding tube, right now. I don’t care if I starve to death, I’m ordering you to take it out”.

We went into my room, and I sat down on the bed. Part of the tube was stitched into my nose. The doctor cut the stitches, then pulled the tube out. And having the tube out, my throat immediately started to feel better. It wasn’t the end of my Odyssey by any means, but it made me feel emotionally and physically better for a few hours. I had made it through the night, and later that day I would begin swallowing therapy.

Towards the end of my stay, one of the nurses asked me if Kathleen and I were married. I said no. Then she said to me, “My advice to you is to go out and get her a ring. I’ve seen many a girlfriend and boyfriend run away from their significant others after a cancer diagnosis, or when things turn unpleasant. Some people just can’t take it.” I related that conversation to Kathleen shortly thereafter. She replied with a smile, “I think that’s a good idea.”

Eventually, it came time for me to be discharged. The morning I was to leave the hospital, the nurses noticed a bump on the scar on the left side of my neck where they had made the incision for the neck dissection. They determined that it was a bacterial infection, and sent me home with some oral antibiotics. Why they sent me home with an active infection I do not know.

For logistical reasons, mostly because Kathleen would not have been able to stay with me 24/7, we decided that I would convalesce at my folks’ place outside of Manhattan. They say that hospital patients don’t realize how sick or powerless they have become until after they have been discharged from the hospital and have to function at home. This was certainly true in my case. I was completely dependent on mom and dad to bring me my different medications on schedule– often in the middle of the night– and the baking soda/salt rinse protocol I needed to follow in order to prevent a fungal infection from taking over my tongue was an extremely difficult task. What made things worse, however, was that I began to experience severe pain on the left side of neck, which worsened every day. Eventually, it felt like there was an electric motor in my neck. I could not sleep because of the pain, and the combination of that plus the resulting sleep deprivation felt like some kind of medieval torture. I thought I was going fucking insane.

After I had been home for a few days, the bump on side of my neck had grown from the size of a champagne grape to that of a golf ball. The excruciating pain and the increased swelling in the neck were obviously related. We decided to drive down to Sloan Kettering to have it checked out. None of my doctors had clinic that day– in fact, it may have been a Sunday– but I was seen by one of the doctors in the Head and Neck Fellowship Program, who worked with Dr. Kraus.

He took one look and said, “This is a life-threatening situation. You need to be admitted immediately”.

That was not the kind of information I wanted to hear. I had not slept in days and my mental state was already fragmented and teetering. Kathleen was out of town on a work assignment, and Joe and Paul had gone back to California. The folks advised Joe, and Joe called Kathleen, who apparently freaked out and was convinced my demise was certain.

They started the I.V. antibiotics immediately, even before I was admitted, to prevent the infection in my neck from becoming septic. I had to wait for a bed to open up, so in the meantime, I stayed in this little room– or what seemed like a little room, but I likely never retained any accurate memory of that time due to the sleep deprivation I had experienced up to that point.

After I was admitted, the fellow decided to open and drain the infected area along the incision line on the left side of my neck where they had done the dissection. (A neck dissection had been performed during my surgery to remove lymph nodes in order to see if the cancer from my tongue had metastasized. It had not.)  For some reason, he opened up the incision line without using any kind of anesthetic, and I wasn’t on any pain meds at the time. To this day, I do not know why I wasn’t given an injection of lidocaine.

He also advised me that since he had to re-open the incision area, I would now have a scar there for the rest of my life. Then he added, “Remember earlier, when I told you this was life-threatening? What I really meant to say was that it could be life-threatening if it wasn’t treated.” Okay, thank you for the clarification.

The I.V. antibiotics were curing the infection, and that was a wonderful thing. Unfortunately, the antibiotics also caused severe bleeding in my colon, and I had to be transfused. I was put on steroids to stop the bleeding.

The worst part about my stay, however, was that every morning I had to have my neck wound irrigated. That was extremely uncomfortable. After completing the wound irrigation every morning, I would ruminate about having to have it done again the next day, meaning, there was no psychological relief during the 23 hours between treatments. Taking a shower was a nightmare. They wanted me to make sure that the water ran over my wound, but it was a logistically difficult thing to accomplish.

I can’t remember how long I stayed in the hospital that second time. Ten days? Two weeks? I don’t know. Eventually, I was discharged, presumably in better shape than the first time.

I once again went back to my folks’ house to recover, and started physical therapy soon thereafter. My head was tilted down and to the left due to favoring the incision area on my neck, and that would have to be addressed immediately to prevent torticollis. My favorite part of PT was when I would lie on my back and the therapist would turn my head to the right. I could feel my neck muscles saying, “Thank you!”. That really felt amazing.

My speech was pretty poor. I couldn’t pronounce Ds or Ts, so “Friday” sounded like “Fry-ay”. “Butter” sounded like “BUH-er”. “Vanity” sounded like “VAA-nee”.

One Saturday afternoon, Kathleen came over to visit. The folks had gone out, and like two teenagers who had the house to themselves, we decided to engage in some afternoon delight. It had been what seemed like months– well, since before the cancer diagnosis. We were in the guest room, and as we were exercising, in flagrante delicto,

The door opened…

I jumped up like a jack rabbit and ducked under the side of the bed, as Kathleen ran behind an arm chair.

It was a false alarm.

The door had opened up by itself, caused by a gust from the air conditioning vent.

Kathleen would always say she had never seen me move so fast, and would go on to take great joy in relating this story to her friends. We also decided that that was a sign that I should go back to my own apartment.

I continued physical therapy throughout the summer and started speech therapy as well. Although at times I found it difficult to concentrate and remain alert, I was eventually able to get my speech back to about 90% of what it was, working with Cathy Lazarus at NYU Medical Center.  I even started singing again, as in this Dwight Yoakam cover, and although I could tell the difference, particularly with the “S” sounds, most people said that I sounded the same as before the surgery. Subsequent imaging over the next few months, and then years, indicated that the Stage I cancer had indeed been nipped in the bud and was no longer a threat to my physical health. I started running and joined a group called the New York Flyers.

Psychologically, however, the effects of my ordeal were unquestionably indelible, and regrettably, adversely impacted my relationship with Kathleen.

But this is only the prelude to my story. Stay tuned for an extraordinary journey as we travel eleven years, back to the future.

 

4 comments on 2004: A Trip to the Unknown

  • D.

    An extraordinary revelation of an individual’s feelings as he engages in life and love and begins a journey, struggling with the complexities of medical issues, anxieties, non-working therapies, life, hope, and adjustments. I look forward to the next chapter.

    • Michael Langer (author)

      Thank you for the note, D. Please keep reading, and always feel free to comment and respond! Kindest regards, — Mike

  • Laurie

    Michael I am a friend of Joe and Paul’s and Joe shared this link. I only know the broad outlines of your story and it’s wonderful to hear the details and feelings that you so clearly remember. Keep at it! I’m reading!

    • Michael Langer (author)

      Thank you, Laurie, I’m so happy that you’re reading my blog! Please stay tuned– I hope to have my next post up within the next few days. Kindest regards, — Mike

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