For 10 hours, I lay in a medically-induced coma. Unconscious, intubated, a black nothingness, unaware of what was happening to my body.
And then… THUD!
I was abruptly awakened by what looked like a half dozen eighteen year-old girls. It felt like they were aggressively pulling tubes out of my body, or shaking me, or something like that.
“Michael, your surgery’s finished!”, they all appeared to sing in unison. For a millisecond, I had no idea where I was or what was happening. And then I remembered why I was there.
I was completely immobilized. My left arm was in a cast, and my legs were wrapped in some sort of compression device. I had a urinary catheter, and all sorts of IVs and monitor cables attached to my body. My face and neck were covered in bandages.
It felt like my mouth was filled with a “bag of tongues”, or maybe two tongues, one on the top and one on the bottom. At some point, Chalon came in, sat down next to me and held my hand.
Throughout the evening, I had visions of what appeared to be black & white movie stills, each one accompanied by a chord that sounded like the start up chord of a 1990’s Macintosh computer. These “photo images” were invariably filled with hundreds of people from the 1940’s or 50’s, all smiling and looking at the camera. The men all wore hats. It wasn’t a scary vision, but it was strange and unnerving. This unpleasant psychedelic happening was due to the massive amounts and varieties of anesthesia I had been given. I would drift off for about 10 minutes, have these visions, wake up in a panic, then fall asleep again. (Chalon told me sometime later that every time I woke up, I would squeeze her hand, and my eyes would bug out of my head. She would remind me where I was, tell me that the surgery had gone well, and that I could go back to sleep. This would continue throughout the night).
Dad came into the recovery area and gave me the thumbs up sign, but even in my semi-conscious state I could tell that my post-surgical appearance was upsetting to him. Mom walked in for a moment to see me too. And, I could see from her expression that I probably did not look very good. In addition to the sundry cables and bandages covering my body, I had a tracheostomy tube sticking out of my neck, and my face must have appeared extremely swollen.
Eventually they took me from the recovery area into my own private hospital room. At about that time I felt my stomach to see if they had put in a G-tube, which we had all agreed they would do. But there was nothing there. I then realized that instead of putting in a G-tube, they had opted for the nasogastric tube, the one that had caused me so much misery in 2004. I was extremely upset. It was another metaphor for my complete loss of control throughout this process. This inexplicable decision by the medical staff was to cause me severe problems down the road, which could have been avoided if the G-tube had been put in as previously agreed.
During the second or third night of my hospital stay, I had this lucid dream in which I was standing beside my bed. I kept saying that I wanted to go home and leave the hospital. Chalon was there, telling me not to leave. I eventually agreed to get back into bed.
But here’s the rub: As I was to discover over a year later, it was not a dream, it actually happened. Well, part of it, anyway.
As a result of the pain medication cocktail they were giving me, combined with the surgery anesthesia that was already in my system, plus, an additional mega-load of Ativan, I was having some kind of medication-induced psychosis. According to Chalon, I was in reality trying to get out of bed, and shouting that I wanted to leave the hospital and go home. She had to physically block me from doing so or I would have either fallen over or pulled out an IV. Apparently, this went on for something like six hours. (In my dream, or hallucination, this happened for about 30 seconds.) The nurses were freaking out, but Chalon convinced them that she could handle it. Sometime after that episode I asked to see a psychiatrist, but by the time an entire team of psychiatry attendings and residents arrived, I had become more lucid. Chalon, who is a trained therapist, told them that I had improved at that point, but they did a full evaluation anyway.
Chalon was with me almost 24/7, except for the few hours a day when she had to go home for a shower and a change of clothes– and, to feed her cat. During the times she was away from the hospital, Mom and Dad were with me to lend a hand (often literally), and they did a pretty good job under the challenging circumstances. Joe and Paul were also there quite a bit. My brother Matt was back east, keeping in touch by phone and email. It seemed though. that every time Chalon left to take a break, something bad would happen.
While I didn’t have a fever, I often felt as though I were burning up. I would ask Chalon to soak a wash cloth in ice water and put it on my forehead. The problem was that for some reason, whenever she would put the cold cloth on my forehead, I would start to Brady– and you have no idea how ridiculous I looked trying to sing “Sunshine Day” and “Time to Change” in my condition.
Actually, the kind of Brady I’m referring to is called “bradycardia”- a slowing of the heart rate. When Chalon put the cold washcloth on my forehead, my heart rate would drop to the point where it set off an alarm, and the nurses would run in to my room in a panic. I used to be a runner, and my normal resting heart rate was about 55 beats per minute. Putting the cold cloth on my forehead resulted in my heart rate dropping down to the 20’s. Chalon tried to explain the correlation between the bradycardia and the cold washcloth to the doctors and staff, but no one would listen (until my next to last day in the hospital, when Chalon convinced one of the nurses to look at the heart monitor while she pressed the cold cloth against my forehead. The nurse saw that the harder she pressed the cloth against my forehead, the lower my heart rate dropped. The nurse agreed to adjust the alarm device, because the cold cloths allowed me to fall asleep).
During this hospital stay, the cold compresses alleviated my suffering more than any pain medicine. It was like being released from the hot fires of hell to the cool waters of heaven.
Every so often, the nurses would have to use a suction device to remove the mucus secretions that were accumulating near the bottom of the trach tube. They would stick this thin rubber floppy catheter down my trach, and suck out anything that was in there. It was torture, but had to be done relatively often.
The reason they had to put a trach in during my surgery was because the hemiglossectomy procedure caused swelling that would impede my airway. Accordingly, they couldn’t remove the trach until they were sure that I could breath on my own. I therefore had to go 24 hours with the trach “capped” to demonstrate that it was safe to take it out. During that 24 hours, I would attempt to breath on my own without having any air go through the trach tube.
24 hours to remove the trach. It seemed like an eternity. I couldn’t bear the suctioning and wanted it out as soon as possible. Apparently, Chalon told me to focus on the clock on the wall to pass the time. But since my brain chemistry was still screwed up, my fixation on the clock turned into some nightmarish-obsession as in a bad, fever-induced dream (although, I didn’t actually have a fever.) Seconds seemed like hours… but mercifully, the 24-hour period ended and they removed the trach.
They also removed the nasogastric tube, which meant that going forward, I would have to take all of my nutrition by mouth.
When the doctors told me they were going to discharge me from the hospital, I became very anxious– I didn’t think I was ready, and couldn’t imagine that I’d be able to survive on my own. But eventually, I was discharged.
We decided that I would stay at Chalon’s place to recuperate from what was a psychologically and physically challenging hospital stay.
I remember walking slowly into her bedroom like a mummy-zombie, with bandages wrapped around my neck, arm, and left thigh. And who was waiting there for me? None other than my incomparable and famous kitty, Zoey. He would be sharing the room with me and Chalon throughout my stay. We could not let him roam the entire apartment though, because Chalon had a cat of her own and we weren’t sure they would get along. Would Zoey recognize me? I couldn’t bend down to pet him or pick him up, but I’m sure he understood.
The first few nights were difficult. I had a machine next to my bed that would allow me to suck out the saliva and mucous that would accumulate in my mouth in throat. Sometimes I would fall asleep and abruptly wake up in a startled panic because I couldn’t breath, or felt like I couldn’t breath.
During this initial recuperation period, a home health nurse came to see me every other day to work on my arm and thigh wounds, and take my vitals. A physical therapist also came by to get my left hand working again (I could not bend my wrist or open my fingers), and to help me work on getting some range of motion back in my neck. A speech therapist also lent a hand, helping me improve my swallowing (or trying to). My favorite time of day was when they left, although the home health nurse was very good.
Speaking of speech therapy, one of the medical people at UCLA– I can’t remember who– strongly recommended that I use something called the TheraBite® Jaw Motion Rehabilitation System™, which is basically a device designed to help you open your mouth wider after long periods of non-use. It is made of plastic. You bite down on a plate, squeeze the handles, and it helps your jaws to open wider. If you saw this contraption in person you’d think that it was something you could buy on Amazon for about $29.99. You’d think that was a fair price, and also, that whoever made the thing would make a nice chunk of change on the sale. I was told to fill out a form, and I would be referred to someone at UCLA who would help me place the order. My cost? $800.00. This was an unpleasant introduction to the economically devastating world of cancer-related expenses that are not covered by insurance. Did it work? Yes. Was it helpful? Yes. But $800.00? Unfortunately, when you’re in this position, you want to do everything “right” and you’ll listen to (almost) every recommendation. As I write this today, the device is presently selling on Amazon for $569.99. Rightly or wrongly, I often thought that as a patient at UCLA, I was being passed around from department to department so that everyone could “take their cut” from my cancer condition. While that may not have been their intention, that is how I genuinely felt. Some time later, I was told by a speech therapist at another institution that a stack of tongue depressors would work just as well as the TheraBite®.
Slowly I attempted to regain my strength and stamina over the next few weeks. Solid food was still a bit difficult for me to do, so Chalon would make me shakes in the Vitamix. At one point we tried going to a Home Goods store, and I walked around a bit, but I got tired very quickly and had to sit down.
Eventually I had a follow-up appointment with Dr. Abemayor, who noted that in addition to starting radiation therapy in about 4 weeks or so, I would also likely need chemotherapy. He referred me to a radiation oncologist, whose name I cannot presently remember, so I will call him “Dr X”, and a medical oncologist, “Dr. Y”.
The radiation oncologist confirmed that I would need daily radiation treatments over a period of about 6 weeks. Paul (my brother-in-law who is a radiation oncologist) eventually gave his “seal of approval” to Dr X’s treatment plan and things were pretty straightforward.
Things did not go as smoothly with “Dr Y”, the medical oncologist. Chalon, my brother Joe, and I met with her at her office. Paul was on the telephone and listened in on the consultation. Due to some kind of communication misunderstanding with the doctor regarding my treatment plan, Joe went ballistic. He also recommended that I find a different medical oncologist. I understood that he was acting as my advocate and was concerned about my survival and welfare, but the problem in finding a new medical oncologist was that I was physically tired and emotionally exhausted. I did not want to go through the whole process again. Accordingly, against Joe’s advice, I decided to stay with Dr. Y. I would have one chemo treatment every week, for about 6 weeks.
I started my first radiation treatment and first chemo treatment at about the same time– just before Christmas, 2015. Before administering chemotherapy medications through the IV, the nurses will invariably first infuse the patient with an anti-nausea drug to prevent the patient from vomiting maliciously several hours later. At my first infusion the nurse started me on an anti-nausea drug– it may have been Aprepitant or Fosaprepitant– and immediately walked away. About 15 seconds later I turned to Chalon and said, “I think I have a problem”. I had trouble breathing and my face felt like it was burning up. I had also turned as red as a lobster. Chalon ran to get the nurses, all of whom were at the other end of the infusion area. I was close to a nurses station, but there were no nurses there. Also, I had no call button. The nurses did come, however, removed the IV, and within seconds, the symptoms subsided. I’m not sure what other anti-nausea drug was that they gave me, but the Cisplatin chemo infusion continued that day without incident.
The following week, I had my second chemo treatment, along with a pre-infusion of the anti-nausea drug Zofran. I came home and sat down at a desktop computer to do some browsing on Amazon.com. “This isn’t so bad”, I thought to myself. “I just had chemo, and now I’m home, surfing Amazon. Who said cancer was a bad thing?”. But after a few minutes at the computer, I started to feel cold. I was wearing a t-shirt, and should have been wearing something warmer, I thought. I decided to get into bed, thinking I might be getting sick. But I started to feel colder and colder. Eventually I started shivering. Chalon covered me with several blankets, but I couldn’t stop freezing. Then I got the chills, and my teeth started chattering. My heart started beating very rapidly, until I thought it would burst out of my chest. I took my temperature… it kept going up… 100°.. 101°… 102°… 103.5°. Finally, sometime after 1:00 am, we contacted the doctor on call, who told us we should go to the UCLA Medical Center emergency room.
Chalon drove me to the UCLA ER, and Joe and Paul met us there. The medical team took blood samples, thinking that I may have picked up some kind of infection during my infusion. But all tests came back negative, including blood cultures that were looking for the presence of any pathogens that may have entered my bloodstream.
The following week, I had my third chemo infusion. Shortly after I returned home, I began to experience the same symptoms as I had the previous week– chills, high fever, and rapid heart rate. While all of these were agonizing, it was the rapid heart beat that was most concerning– well, scary, really. This time, however, I decided that a trip to the ER was not necessary. I knew that the previous week, the symptoms had subsided on their own after a few hours, and had not killed me. But we still had to determine what was causing the chills, fever, and rapid heart rate.
The doctors at UCLA had no definitive answer. Once again, my brother-in-law Paul came through. He asked me for a list of all medications I was taking, and was able to determine the cause of the symptoms I was having after the infusions:
I was taking 200 mg of Zoloft on a daily basis, which had combined with one of the anti-nausea drugs (I think it was Zofran) to create a serotonin jamboree in my body.
Serotonin syndrome is a potentially life-threatening condition. Looking back, if it had gotten any worse, I may not have survived. Prior to starting my treatments, I had told the medical oncology staff at UCLA that I was taking 200 mg of Zoloft daily. But apparently, they had not foreseen the possibility of serotonin syndrome resulting from the combination of Zoloft and Zofran.
I would have appreciated some statement on their part, some acknowledgment or apology for not having monitored the drug interaction risk, but none came.
During the same period as my chemo treatments, I was having radiation therapy. Every day, Monday through Friday, Chalon would drive me to 200 Medical Plaza in Westwood. Usually these trips took place in the morning. It took us between one and a half to two hours for us to reach our destination, due to the heavy L.A. traffic. The return trip usually took about an hour and a half, but could take longer, depending on the time of day. Each radiation treatment was only 10 minutes long, so sometimes we would be at 200 Medical Plaza for less than a half hour before getting back into the car and heading home.
After the serotonin syndrome scare, the medical oncologist had to provide me with some type of alternative treatment to control my chemo-induced nausea. She gave me a prescription for either dronabinol or cannabidiol– I can’t remember which one, but they came in little spherical softgels. Dronabinol is a synthetic form of THC. I took the medication as directed, but it had no effect whatsoever. For all the good it did, I could have been taking M&Ms– the quantity or quality of the active ingredient must have been very small. As a result, I began uncontrollably vomiting for hours following that round of chemo.
The next time I met with the medical oncologist, she said, “the only other thing I can think of (to control the nausea) is medical marijuana”. It turned out to be a very good solution. In January of 2016, medical marijuana had been legal in California for 20 years, having been approved through Prop 215 in 1996. Dr. Y gave me a prescription– well, actually a recommendation letter– and Chalon and I drove to a dispensary in Pasadena.
The woman at the dispensary told us that we would need a license, and referred us to a doctor about a mile down the road. We took Dr. Y’s letter to the doctor’s office in Pasadena, which was not his office per se— it was more like a store front that granted medical marijuana licenses. The doctor did a consultation with me “from an undisclosed location” through Skype. He granted the license, for which I paid a $40 fee. The receptionist printed out the license, and we took it back to the dispensary. We were then brought into the room where they kept all of the cannabis products. There were dried flowers to smoke, edibles to eat, and oils to take sublingually. I told the young lady behind the counter why I was there, and she recommended that I take CBD oil to control my chemo-induced nausea.
The brand of CBD oil I purchased was “Alive Botanicals” (manufactured by Mateel Medicinals, LLC), containing a 20:1 CBD to THC ratio. This was the very first brand of CBD oil I ever bought, and to this day, it remains the most effective I’ve ever tried.
The oil came in a plastic syringe. I squeezed a few drops under my tongue a couple of hours before the chemo, and a few drops right before the infusion. Following that infusion, I discovered that the CBD oil controlled about 90% of my symptoms. If I had taken a higher quantity of oil, it may have been 100% effective, but at the time I was very hesitant to take a larger dose, not being as familiar with cannabis as I am today. Chalon also noted that the CBD oil had a very positive calming effect, and reduced my overall anxiety level.
During my trips to the dispensaries, I thought that I would be able to confer, converse, and otherwise hobnob with my fellow cancer patients who like me, were seeking relief through cannabis. But frankly, many of the other patrons I encountered appeared to be stoners. The first dispensary we went to– which we liked very much– eventually closed down. It seemed that every time we found a good dispensary it would go out of business, either on its own accord or because the government shut it down. This was before Prop 64 (which passed in November 2016), and many marijuana dispensaries were operating on the fringes. There was also a major inconsistency among the various “budtenders” we encountered regarding their knowledge of medical cannabis.
As the days and weeks went by in January of 2016, my energy level and ability to eat decreased, due to the effects of the radiation and chemotherapy on my saliva and tastebuds. Eventually it became very difficult for me to drink a container of Boost, Ensure, or even the homemade banana, peanut butter, and protein powder shakes that Chalon would make in the Vitamix. I lost considerable weight, which both frustrated and scared Chalon. Had the doctors put in the G-tube during my surgery as I initially requested (and to which they agreed), I could have been taking in nutrition much easier and would not have suffered the consequences of severe wait loss.
The daily trips to Westwood for radiation therapy were also taking their toll. My attitude towards Chalon– and towards day-to-day existence in general– was affected by a lack of nutrition, lack of sleep, and the infusions of poison into my body. Near the end of my radiation treatments, we would sometimes drive to and from the appointments without speaking to each other. Chalon was likewise becoming both frustrated and fearful regarding my deteriorating physical condition. Our relationship was on the rocks, and I highly doubted we would be able to keep things together once my radiation and chemotherapy ended and I moved back to my own place. Chalon was also apparently convinced that I was going to die at her apartment and that she would be blamed. Although I knew that I had lost considerable weight, I never thought at that point that my life was in danger. I had every intention of recovering and getting back on my feet.
In late February of 2016, I completed the 6-week course of radiation treatment and had my last chemo infusion. There was no celebration, no sense of relief. My brother Joe had posted something on Facebook to the effect that he had just seen me and that I “looked like shit”. It was an accurate description.
Just think for a minute… what if a treatment had existed that didn’t involve surgery, chemo, or radiation? Perhaps something that would have helped my own immune system kill off the cancer? If such a treatment had been available, I could have avoided everything I had been forced to endure…
I prepared to move into a new apartment, and after a short rest period, return to work following a four month leave of absence…