I don’t remember when or how I received the results of my July 2017 PET scan, but I’m sure that it was my brother-in-law Paul who provided me with the information.
Unfortunately, the news was not encouraging– After completing the Carboplatin and Docetaxil chemotherapy regimen, the follow-up imaging indicated that the mass on the left side of my neck was still cancerous, and had grown larger.
The three metastatic lymph nodes in my superior mediastinum (located between the lungs) were also still there, but no new cancer sites were detected.
I didn’t have a melt down, I did not panic, and I was not overwhelmed by fear. Was I in pain? Yes. Was I uncomfortable? Very. But as my friend and noted psychiatrist Dr. John Aliapoulios had suggested a few months prior, it was not my time yet. I didn’t know exactly how it would occur, but I was sure I would be cured. How could I be so certain of this when four kinds of chemo and two separate regimens of radiation therapy had failed to make a dent in what was a very aggressive and resistant cancer?
Our unconscious Self has a different relationship to time and space than the conscious mind. I believe that my unconscious was already aware of the miraculous cancer-killing process that would occur a couple of weeks or so later, and that is how and why I remained relatively calm. I knew that eventually, I would be okay.
Others were not so sure.
Following the PET report, I went to City of Hope for my regularly scheduled follow-up with my medical oncologist, Dr. Massarelli. Unfortunately she was out that day (out of the country or on vacation), so I met with Dr. X, one of the other medical oncologists, who was covering for her. The tumors in my neck had become exophytic, fungating, and ulcerating.
In a rather bizarre exchange bordering on beratement, Dr. X chastised me for either the lack of progress in my medical treatment, or, for my relatively composed attitude.
“If this doesn’t get any better, you’re going to die!,” she fumed. “Do you realize that?”
What was she saying? It was as if she didn’t realize that I’d been receiving treatment for the past two years and had begged for immunotherapy. Did she think that this was my first ever visit to an oncologist? Was she upset that I wasn’t more panicked? What was she expecting from me? It was a surreal encounter– and kind of offensive, actually.
At about the same time– I’m not sure if it was the same day– I also had an appointment with Dr. Kang, a head and neck/ENT surgeon. I’m not sure what the initial reason was for my visit, but Joe and Paul were there with me in the office. Joe mentioned to Dr. Kang that my breathing sounds appeared to be somewhat off when I was sleeping (I was spending more and more nights in Joe’s guest bedroom during that time, and my respirations must have traveled far down the hallway).
Dr. Kang did a nasal endoscopy (or laryngoscopy), a rather uncomfortable procedure that I’d had several times before. Basically, they take a thin, flexible tube with a camera attached, stick it up your nose, and down your throat. Then they can see what’s happening in there.
“We need to do a trach immediately,” he said. An emergency tracheotomy. The tumor was blocking my airway– so much so that at any moment it would be impossible for me to breathe. They prepped me for surgery, and I was in the O.R. within the hour. Paul and Dr. Kang asked me if I had an advanced health care directive just in case something went wrong on the operating table– but I was sure I’d emerge in one piece, with my faculties left intact. I had the procedure and was admitted to the hospital, my first experience as an inpatient at City of Hope.
Again, my memory of the sequence of events is somewhat off, but sometime after being admitted I had this horrendous constipation problem (caused by the opioid meds, no doubt). Too much information? Oh, but wait, dear reader, it’s a great story!
So, I’m in agony, and I can’t go. They wanted to give me a saline enema, but I preferred to try a suppository first. So I’m getting up from my bed, running to the bathroom, trying to go, then going back to my bed. It was an exhausting process. Soon, I got tired of pulling my gown up and down, so I just took it off. Now I’m running back and forth from the bathroom to my bed, stark naked. The nurses are in there, but I didn’t care. It was like I had lost all sense of what it meant to be human. I was just another animal, much like Charlton Heston in Planet of the Apes after he’s been stripped and degraded.
So, I’m waiting for the suppository to work. A nurse comes in, and I’m standing there, buck naked, pleading with her, waiving my arms like an orangutan, protesting that I still can’t “go”.
“Are you sure you used the suppository correctly?”, she asked.
Oh my god… Did she just say that? All my life I’ve wanted to hit a home run out of Yankee Stadium, and now I have my chance. It was an underhanded throw, right over the plate. And without missing a beat, I swung away.
“Of course I used it correctly!,” I shouted. “What did you think I was going to do, shove it up my ass?”
Deep to right… that one is…. gone! A Grand Slam home run for the Mikey!!
She got it. She knew I was making a joke. She laughed and walked out.
As I was running around naked– inside the bathroom and out, I didn’t feel like I was violating any social norms. I had nothing left to protect, no image to preserve, no reputation to ensure. I was no longer a sexual being, and no one could be looking at me in that way. How could they, after all I had been through?
Bathrooms. Have you ever thought about what they symbolize? They’re a metaphor for completely stripping away one’s persona. We go in there, and like all animals, attend to our basest, lowest chakra. It’s the room in which 50 million years of hominid evolution and 10,000 years of civilization go down the toilet, as it were.
But for me, the bathroom was an especially fitting metaphor. I’d been forced to eat shit, as it were, for aeons, and this was the undeniable crowning moment. Trying to emerge intact and alive from the dung heap of a resistant cancer, attempting to force the shit/cancer out of my body. Prior to the trach placement, even my breathing sounds must have sounded like a toilet flushing.
Shortly after the constipation problem was solved (and, with underwear back on), I had a swallowing study. A modified barium swallow study to determine if food or water was going into my lungs when I ate or drank. If that were the case, I would need a g-tube, the same kind of tube that I had wanted at UCLA when I had my surgery in November of 2015. This time, though, I wasn’t too crazy about the idea. The speech therapist and the radiologist had differing opinions about whether I would need one. The radiologist didn’t think it was necessary. The speech therapist insisted that it was, that I would get pneumonia or whatever if I took in food or water by mouth. Then they started to argue, the two of them. The radiologist said he would talk to Dr. Kang, who in turn left the decision up to me. I soon thereafter chose to have the tube, because I had difficulty drinking water following the tracheostomy procedure. Another trip to the O.R.– another opening, another show.
So, I soon had both a trach and a feeding tube. This initiated the Parade of Fluids, the secretions and emanations seeping out of the stomas for my g-tube and trach, and from my mouth and throat, and from the fungating tumor emerging from the left side of my neck. Fluids not associated with any pleasurable experience, but with the malfunction and breakdown of an organism. But as is the case with shite, something extraordinary can also arise from fluids, given the right conditions.
The doctors provided me with the following “cocktail” to manage my pain from the tumor:
I particularly enjoyed being given methadone. It made me feel tough.
A couple of days after they put in the feeding tube it became clogged, and it took an excruciating 8 hours to fix it. I had to take all of my medications through the tube, and certain drugs– such as those that are given as granules contained in gel caps– have a tendency to clog it up, which is exactly what happened in my case. If this occurs, it can be extremely difficult to unblock the obstruction.
Mom and Dad came to visit me in the hospital. At night, we would go into the lounge area on the head and neck floor and look out over the evening lights of Duarte and the towns beyond. (Getting a bit emotional as I write this). Those were difficult times– not only for me, but I’m sure even more so for my folks– very stressful. Kim Romig, my former co-worker who gave me a book called The Journey is Everything: Saying Yes to Cancer, was by that time working at City of Hope. She came to visit me in my hospital room. It was kind of strange, because we had known each other as colleagues. Now she was visiting me in the hospital, and saw me as an extremely vulnerable cancer patient with an IV in my arm and a trach in my neck. I told her that after I got better, I would have a party and invite her and everyone from work. She just looked at me– incredulously, I thought– but it could have been my imagination.
I didn’t know it at the time, but the medical team at City of Hope was convinced that my death was imminent. And I’m extremely fortunate that I didn’t know (intentionally, on my part), because it would have hindered my recovery. I needed to create and believe in my own reality. I was adamant on this point and worked as hard as my energy level would allow in ensuring that no negative information reached my range of hearing, going so far as to tell Chalon and the medical staff to stop talking whenever they would attempt to offer any opinions or predictions as to my prognosis.
Word was getting around that patient Langer appeared as calm as a cucumber when it came to his medical situation. That upset some people. Maybe they thought I was psychotic, or at best, in denial. I got the sense they wanted me to demonstrate some sort of agonizing grief or dread. Well, that wasn’t going to happen. My reality would be my own, and only my own. Anything else would be a self-fulfilling prophecy and a death sentence.
A social worker stopped by one afternoon, looked at me, and said, in a rather condescending and snooty way, “How much do you know about your cancer?”. I knew what her problem was. “As much as I want to know, twit,” I thought to myself. But I backed off and gave her the answer she wanted. “Well, I know it’s very serious,” I said. Then she smiled. For some reason that response made her happy. I’ve encountered these Nurse Ratched types my entire life, both as a patient and in the professional-world. They’re out of balance and don’t know how to convey empathy or compassion. A large number of them find work in the medical field.
My inevitable demise, according to the doctors, would come from carotid blowout syndrome (CBS). The tumor in my neck had wrapped around my carotid artery. All previous treatments had failed and there was nothing to indicate that the tumor would stop growing. Sometime very soon it would rupture my carotid artery and I would quickly bleed to death. How soon? They weren’t sure. Possibly a matter of hours– or days– or weeks. Their prediction was based on the apparent aggressiveness of a cancer that had not responded to any of the previous treatments.
It was possible that the carotid blowout would be preceded by a sentinel bleed from my neck, at which time I’d have about 15 seconds to live. Chalon knew this, I was later to learn, and I’m sure Paul did as well. Joe I’m not sure, but my folks definitely not. I had to give one of the doctors special permission to tell Chalon anything she wanted to know– but I didn’t want to hear it myself. And still, she had to press that doctor to cough up the information and be frank.
The doctor told Chalon that my death from a carotid bleed was a certainty, not a possibility.
What the medical team attending to my care may have not known at that point was that Dr. Massarelli had returned and had finally approved the immunotherapy– Keytruda– which I would begin the following Monday, assuming I could get to Monday without having my carotid artery collapse like a wet taco.
Did you know that Keytruda– pembrolizumab– is made from the fluids of Chinese Hamsters? And that the established medical community once thought that immunotherapy was shit?
I was discharged on a Friday, and would start immunotherapy on Monday. What was my family thinking? I do not know. I was living in one reality– the rest of the world, in another.