When the Tides of Life Turn Against You

It’s late March of 2017, and I had just come back from visiting the folks on the east coast. I’m driving through Anaheim, California, when on a genuine whim I stop off at the nearest salon I can find to have my hair touched up. I had gone rapidly gray following my last chemo treatment and wanted to return to work looking healthier than I actually was.

A couple of days later– and, for the second time in a year–  I returned to work following a four-month absence.  There were flowers on my desk, and, a get-well card that was signed by (most) of the residency program staff. One of my co-workers, Kim Romig, who now works at City of Hope, offered to give me her aromatherapy necklace. She always kept it infused with lavender, an essential oil which is supposed to have a calming effect. I thanked her for her offer but politely declined because my neck remained sensitive and I didn’t want anything abrading against the incision line.

Kim gave me a book called The Journey is Everything: Saying Yes to Cancer. It was written by one of her friends, Suzette Hodnet, a mixed media artist and Stage IV cancer survivor. I read through the book and was amazed at this woman’s attitude. Love? Beauty? Tranquility? Grace? Joy? Peace? I thought, this is the antithesis of my own experience: resentment, anger, frustration, fear, and pain…

****************************************************************************

Okay– I have to pause the blog, get into my DeLorean, and head back to the future for a few minutes. It’s August 17, 2019, 11:33 pm.

A few weeks ago I started reading a book called Mail for Mikey, which is an epistolary memoir written by the actor Orson Bean. When I was in first grade– yes, first grade– I would regularly watch Orson Bean on the TV game show To Tell the Truth.  He was one of the regular panelists in its first syndicated season along with Kitty Carlisle, Bill Cullen, and Peggy Cass. Sometime circa 1970 I have a memory of him leaving the show– the host, Garry Moore, announced that Mr. Bean was going away on an extended trip– leaving the show forever, apparently– and there was a camera shot of him literally walking off the set with two beautiful young women– one on each arm. I have a vague memory that they were Playboy bunnies, but I’m not sure.

Well, it just so happens that Orson Bean is alive and kicking– and, at the age of 91, still younger than I had thought. So, I start to read this book, Mail for Mikey. Immediately I’m drawn to the title, because “Mikey” was my nickname in college (as in the Life cereal commercial, “He likes it– hey Mikey!”). My fellow Beelezebubs called me “Mikey”, so it takes me back to a time when I could sing. Also, my copy of the book was signed by Orson Bean, so it took on an extra personal touch.

Mikey is a member of a 12-step program, and Orson is his sponsor. Orson writes frequent emails to Mikey, telling him about his new found faith in Jesus, and, how he has fallen in love with a woman he met in church, who happens to be the actress Alley Mills (from the TV show The Wonder Years), although she is referred to as “Terry” in this book, for reasons I do not know. Eventually, Mikey enlists in the Marines, and while he is in boot camp, Orson gets baptized, gets engaged, and gets married. Alley Mills gets pregnant and loses the baby. We also learn that Mikey’s girlfriend and fiance, called “Kiera” in the book, also gets pregnant, and Orson conveys his congratulations to Mikey. At this point it’s a very nice, quick, and light read, everything is going splendidly for Orson, and we hope, for Mikey as well. I see that there are only a few pages left and I’m thinking to myself, what a nice, sweet, optimistic book with a happy ending, I’m sure.

I’d been reading the book bit by bit over the past few weeks, and as of tonight, August 17, 2019, had about ten more pages to go.

Meanwhile, I was feeling very depressed and discouraged today. It’s been two years since I started immunotherapy, and although the cancer remains defeated, crushed, killed, and conquered, I’m still in need of spiritual answers and I don’t have them. I can’t sing anymore, so there’s no need to play the guitar or write songs. I still have a trach and an open wound in my neck, reminders of the radiation treatments that in retrospect, I did not need. My new HMO health insurance plan is as frustrating for my out-of-network cancer specialists as it is for me, due to my very complicated medical history. My spiritual desolation is weighing heavily on my psyche and I tell Chalon that “I need to talk”. She’s nervous, she thinks it’s about her. I tell her no, she’s one of the only positive things in my life right now. But I tell her that I need more, and I’m not sure whether I should seek out a therapist, guru, or clergyman. I bring up reincarnation– yes, I’m a believer. I tell her that Yahweh, Jesus, and/or the ultimate mystery of the universe pulled me from the brink of death two years ago for a reason, and I need to know what it was. Otherwise, some poor individual will be reincarnated with my soul after I do in fact depart this world, and that would be terribly unfair. I tell her that I’ve scheduled an appointment to do past life regression therapy. She doesn’t like the idea, she insists that some of these therapists are con artists who do “cold readings” to scam people. I thank her for her concern, but tell her that I’m going to try it anyway– I’ll determine whether or not this particular therapist is on level.

Whew. That was an exhausting conversation, but I feel better. I had to get that out. I start to go to sleep, but then fetch my copy of Mail to Mikey. It’s a nice, pleasant book, and I only have a few more pages to go. I’ll finish it, and then go to sleep thinking about a positive message.

I start to read the last few pages. Wait a second– what’s happening here? Orson’s friend and sponsee Mikey has been sent to Somalia. Somalia? This is 1993. And as soon as I read that, I’m thinking, wait– isn’t that when “Black Hawk Down” happened? But no, that can’t be where this is going, that would be too much of a coincidence.

But that’s exactly what happened, and it is one of the saddest fucking things I’ve ever read–  Orson learns that Mikey was killed in the Battle of Mogadishu.

The next entry in the book is a letter addressed to Mikey in 2008, 15 years after his death. Orson tells him about how different the world is now, post 9/11– so different that he wouldn’t even recognize it. He tells Mikey all about Mikey, Jr., his son, and lets him know that Kiera eventually met a great guy and got married. Also, that after several tries, Orson and Alley decided not to have any kids. Finally, he tells Mikey that he’ll see him on the flip side when he passes over, that they’ll both hang out with Jesus together.

Mother of God, now I’m really depressed, and I’m going to sleep.

************************************************************************************

Okay, let’s head back to April, 2017. A few days after I read Kim Romig’s copy of The Journey is Everything: Saying Yes to Cancer, three people who work in my office are let go, laid-off, fired. They call it the “Friday Night Massacre”. A week later, X, a co-worker who was diagnosed with Stage IV lung cancer in 2016, passes away. I tell one of the doctors I work with that I don’t mind dying, but that I want it to be a peaceful death, without pain. But that’s a bullshit statement– I’m not ready to go yet, under any circumstances.

A couple of weeks later, I notice that there is some “oozing” coming from the left side of my neck, out of the incision line from my December 2016 surgery. I don’t know what it is. I speculate– could it be a symptom of lymphedema? I don’t know. But it also seems like I have a swelling on the left side of my neck, which might be lymphedema as well. I have a follow-up appointment with Dr. Massarelli in a week or so, so I’ll ask her about it then. I tell a couple of my co-workers that I’m worried about the symptoms, but I don’t think it’s a recurrence of the cancer– it can’t be. Sometime prior to my appointment with Dr. Massarelli I stop off at the radiation oncology department at City of Hope. I ask one of the residents for his opinion. He feels around my neck. “It could be lymphedema”, he says. Well, I hope he’s right.

I see Dr. Massarelli for the follow-up. She looks at my neck and I ask her what she thinks. “It could be cancer,” she says, with a worried and concerned look. We schedule a PET scan for a few days later. Around this time I start to cough quite a bit, and I develop a pain that radiates from the left side of jaw to behind my left eye.

I go in for the PET scan the following week. I lay down on the table (much like the one in the photo pictured above with Marcia Brady), but it’s very difficult for me to tilt my head back. They start the procedure, but I’m in quite a bit of pain. I’m also very cold, and I find it difficult not to cough. It’s not a good thing to cough while having a PET scan, because it can screw up the results. I think I’m going to be sick, and tell them to stop the machine, which they do. I get up and sit down in the nearest chair, holding my head in my hands. I’m in a lot of pain– I must have spent an hour just sitting in that chair until the pain and nausea subsided.

I tried to do the scan again a couple of days later. I took some Valium prior to the exam, but it didn’t help with the pain. Fortunately, this time I’m able to make it through, and I anxiously wait for the results, which will be ready the following day.

I had made sure early on in this process that all test results were sent to my brother-in-law Paul for his review, because he is very good at delivering bad news (Paul is a radiation oncologist). He does it in a matter-of-fact matter way and doesn’t get all dramatic or engage in that over-the-top sympathetic tone, as in, “you poor thing– there’s nothing we can do.” He just tells it like it is and says what the next step should be. I knew he would be calling me with the test results, and I was preparing for the worst. When I arrived at the office that morning I took an Ativan. I hate taking benzodiazepines or opioid pain meds when I’m at work because they negatively affect my performance. I also feel that it’s disrespectful to my colleagues to be doped up on pain meds or anything else. But I was a nervous wreck and needed something to reduce the intensity of the apprehension. Accordingly, I was a bit of a zombie that day. The hours went by– 10:00 am, noon, 2:00 pm, and I hadn’t heard from Paul. By the time I was ready to go home at 6:00, the Ativan had pretty much worn off. As I was waiting for the elevator, my phone rang– it was Paul.

He told me that there was a cancerous mass in my neck, as well as “three new spots” in my chest, between my lungs, in what they call the “mediastinum”. It was a brief conversation, but that’s all I wanted and needed to know. I’m not a person who wants to hear a lot of details– I’ll leave that to the doctors. I don’t want to hear their prognoses either, since I don’t want anyone else’s opinions affecting my attitude.

In fact, it was a massive cancerous left neck recurrence, revealing that the January/February re-irradiation therapy and Erbitux targeted therapy had not worked. The three new metastatic lymph nodes in my superior mediastinum made it a Stage IV cancer, although I didn’t know it at time. In fact, I did not know the cancer was considered a Stage IV until 18 months later, well after the Keytruda had been successful and the tumors had vanished. I never had any interest in knowing what “stage” the doctors were labeling my medical condition. It served me, as the patient, no constructive purpose.

I felt dejected and anxious, but I wasn’t giving up– not by a long shot.

I walked out to the parking lot, got into my car, and drove to Target. And the following words of encouragement popped into my head:

“When the tides of life turn against you, and the current upsets your boat, don’t waste those tears on what might have been, just lie on your back and float.”

 

I knew the poem by heart, but I couldn’t remember who wrote it. It had sustained me many times before in my hours of trouble. Was it Tennyson? William Butler Yeats? T.S. Eliot?

 

 

No, it was actually a quote from one of the greatest philosophers of the 20th century, Ed Norton.

I sat in my car in that Target parking lot, called my folks, told them the news about the PET scan, and quoted Ed Norton. There was silence on the other end of the phone. I don’t think they were quite sure of what to make of my approach. But if there’s one thing I’ve learned from dear old Dad, it’s that when you’ve lost your ability to see humor in challenging situations, you’ve lost it all. I’ve always tried to remember that when things haven’t gone as planned.

Ed wasn’t saying that I should do nothing. He was reminding me to follow my own instincts and, if possible, not get into a tizzy. I hadn’t been ready for the Christian faith healer the previous December. Was I ready for Ed Norton now? I had to be Parzival, drop the reins, and hope that my horse would, eventually, lead me to the Holy Grail of tumor destruction. And, as was true in the Arthurian legends, I’d have some magical helpers along the way, with varying degrees of benefit.

My brother Joe put me in touch with a nutritionist named Cori Bardo. Cori championed a plant-based, vegan diet and offered to take me shopping to buy the right foods (“nothing from a box”, nothing processed, and no corn). I was impressed with her knowledge and passion, and if I did not have cancer, would have been happy to have Cori as my nutritional consultant. But I was looking for a solution that would more aggressively address the cancer, and the nutritional approach was not a high priority for me at the time. Then I saw Dr. Michael Galitzer, a doctor who specializes in Energy Medicine. When I arrived at his office in Santa Monica sometime during the first week of May, I was what can only be described as “out of it”. I don’t think I’d been taking any pain medication that day, but I was very disoriented, probably due to a combination of my overall medical condition, plus an underactive thyroid that made me extremely fatigued. All I can remember was that it was a very long visit, an interesting one, and different. But again, I was looking for a one-two punch to knock the cancer off course and I did not return to Dr. Galitzer after my first visit.

I also had a fascinating conversation with a woman who I will refer to as “X”, who advocates cancer healing through cannabis use– specifically, through THC. She made a very convincing case, and recent studies at Harvard indicate that both THC and a cannabis flavonoid, FBL-03G, have increased survival rates in some cancer patients. After all of my previous conventional treatment failures, I was willing to give this a try. I met her at a Starbucks with my medical cannabis license and cash in hand. (Although Proposition 64 had been passed the previous December, recreational weed would not become legal in California until January of 2018, so I still needed the license). I was coughing uncontrollably during our meeting, and told her that I would also be meeting with my medical oncologist later that week.

She and her partner produced their own cannabis oil, and she explained what I needed to do. I had to fill gelatin capsules with her THC-rich cannabis oil and take them both orally and rectally for, oh, I can’t remember how long. This was going to be a pain in the ass, literally, but I was desperate and willing to try almost everything. I filled a bunch of capsules and coated them with coconut oil per her instructions, and made the necessary insertions that night. But I had a terrible reaction– a fever, plus, I got so high that I was close to hallucinating. It took 48 hours for the effects to dissipate. I assumed that I’d accidentally taken too much, but I wasn’t going to risk having that happen again. (I subsequently spoke with X– well over 18 months later– and advised her that she and her team needed to fill the capsules themselves if they were to compete with other products I’d seen in the marketplace. It was a rather forward statement on my part, but it was for her benefit).

At this point the time frame becomes a bit murky, but I’ll do my best.

Just before my appointment with Dr. Massarelli on May 9,– in fact, it may have been on the same day– I met with a therapist at City of Hope. I spoke to her about my anxiety regarding my possible forthcoming death– but, also noted that I was not yet ready to depart the field of time and was not giving up. I had expected her to impart some words of wisdom, some sage-type of advice that only a professional who had experience working with cancer patients could offer.

“First of all,” she said, “We’re all going to die.”

What? Did she really just say that? Is that her standard spiel? Can I get a refund? Who moved the rock?

Later that day– I think it was the same day– I met with Dr. Massarelli, the medical oncologist. I can’t remember if I met with her alone or with members of my family. Chalon and I had recently gotten back together– or, I assumed we were back together. But my memory of that visit is unclear. In any case, we discussed treatment options, and the facts were these: The cancer in my neck was inoperable, because of all the prior surgery I’d had there. The tumors in my mediastinum were also considered inoperable. I couldn’t have anymore radiation, either. So, the only other option was to infuse me with some kind of anti-cancer substance. What would it be? I was hoping for the Keytruda. But again, they thought there was too high a risk for a severe reaction whereby my immune system would not only attack the cancer cells, but would also wage war against my healthy colon cells. This could conceivably result in tales of woe that would be as bad as the cancer itself, including a perforated colon. I was willing to take a chance, but they still insisted on going with another round of chemotherapy. I would take two different drugs concurrently, Carboplatin and Taxotere (Docetaxel), for 3 cycles. These were to be administered from May through June, 2017.

At about the same time, the following events occurred:

1) I took my third medical leave of absence from work.

2) I met with a pain medication doctor at City of Hope, who prescribed me a number of good and effective pain meds. I was scheduled to meet with a pain management doctor about every week or so.

3) It became increasingly difficult for me to eat and swallow food, due to the effects of the radiation I’d received the previous January.

4) The tumor in my neck had started to break through the skin and I required the periodic services of a wound care nurse;

5) Time passed by very slowly.

I also looked into the feasibility of microdosing with LSD or psilocybin in order to ease the death anxiety. I had originally hoped to deal with this issue by speaking with a therapist at City of Hope, but that did not prove to be helpful, as noted above. I was very attached to my ego (I still am), and the idea of my physical death sent me into an existential melt-down and freak out. Maybe a different kind of “freak out” is what I needed.

People who have taken hallucinogens like LSD or psilocybin are known to have experienced an “ego-death” in which they lose their sense of self-identity, the Jungian ego. Having experienced this, many reported later that they were able to remove themselves from a fear of their physical death, since the experience showed them that there would be a peaceful and rewarding experience in the afterlife. I needed to experience this as well, but be guided by a professional who knew what they were doing.

Around this time I contacted my old college housemate and fellow Beelezebub alum, John Aliapoulios, who is a psychiatrist and psychopharmacology expert affiliated with Eisenhower Medical Center in Palm Desert, California.

I lived with Ali and another Beelzebub alum– Chris Nomura– for about a year in an off-campus house on Tesla Avenue behind Carmichael Hall when I was a Tufts undergrad. I first met him when we were freshmen, when we both lived in Wren Hall. From very early on, he talked about wanting to practice psychiatry in sunny southern California. He was always interested in the intricacies and quirks of human behavior– he followed his passion and got his wish. (And, after having me for a housemate, any challenges presented to him by psych patients must have seemed pretty tame by comparison.)

I had last seen John in 2013, when we attended the annual Tufts P.T. Barnum Awards at CAA in Los Angeles. He told a bunch of us how he was working on a new book that would examine psychiatric pathologies in a completely new way. He talked about solstices and equinoxes, and how they appeared to affect or influence human behavior. I listened intently, because this was stuff I’d been interested in myself for years. In fact, if Carl Jung were alive today, I think he would approach psychiatry much in the way John does, with a mix of philosophy, anthropology, religion, astrology, and a strong reliance on intuition.

In addition to being Beelzebub alumni, John and I had another thing in common– both of us lost much of our ability to speak and sing clearly –  he in 2001, and I in 2017. In my case, this was caused by high doses of radiation to the area adjacent to my left vocal cord, causing cord paralysis.

I talked to John about my fear of ego-death, my concerns about reincarnation, and relayed my angst regarding possible experiences in the afterlife. All I’ll say about that conversation is that he conveyed his belief that “it was not my time yet”. I was silent. All of the previous treatments had failed and this was a very aggressive and resistant cancer. I wasn’t sure if he was saying this because he really believed it based on his genuine intuition, or whether he was he simply trying to alleviate my anxiety. Whatever the case, I felt better after our conversation, and better is good. I started the Carboplatin and Taxotere a couple of days later.