The Brotherhood of the Screaming Abyss (72 page)

Generally my spirits are high and my life is certainly very interesting and more emotionally rich than before. I am being taught many things and I welcome this. And I welcome the love and support of friends, this is a mad and wild adventure at the fractal edge of life and death and space and time. Just where we love to be, right, shipmates? I will send more news as I can….

And the band played on.

Love,

T

By then I was back home in Minnesota, and Terence and Christy were spending five days a week St. Francis Medical Center in Honolulu and weekends on the Big Island, as much as they were able. The optimistic tone of my own posts on the site mentioned above belied my true state of mind. I was anguished. There seemed to be no escape from this, all the evidence pointed to this disease being a death sentence; it was only a matter of time. But we were furiously searching for a solution.

We had plenty of help. The daughter of my friend Sid had a different kind of brain tumor, astrocytoma, and had been able to survive far beyond projected expectations using a number of different complementary and conventional treatments. Sid and his daughter and her physician were compassionate and generous about sharing information, and we were grateful for their advice. Sadly, considering how rare glioblastoma was supposed to be (I’m not sure I believe the statistics), our former neighbor from NIH days in Bethesda, Woody, came down with the same type of cancer at about the same time, so we were sharing information and support with his wife Cathy. Woody also succumbed to the disease, as most did, and still do.

Because Sheila and I were the only ones in our group with any background in science or biomedicine, it fell to us to scour the medical literature to try to identify some treatments that might offer a solution. We spent several hours a day on Pubmed, trying to learn more about the disease, and we started searching the NIH-sponsored site for new therapies undergoing clinical trials (
www.clinicaltrials.gov
) to see if there might be any new trials that could help Terence. It’s a daunting and thankless task. Every clinical protocol has strict exclusion criteria, and if one has had certain prior treatments, a candidate may be disqualified for an experimental therapy even though it may seem promising. One becomes trapped in a vast decision-tree matrix; a decision to go with one clinical protocol often slams the door on others, due to the exclusion criteria. Every decision becomes life-or-death, and there is no way to determine which is which. It’s impossible to know if you are making the right decision or not. Or that’s how it feels. This was the dilemma we were in. In the end, given the outcome that we now know, none of the decisions that we made were the correct ones, the outcome would in all probability have been the same for Terence no matter what course we chose.

Sometime during this period, while Terence was shuttling back and forth to Honolulu for his treatments, I met some friends in California for a weekend. They had rented a beautiful condo and had what they said was a new LSD analog they wanted to share, which in retrospect I think was really just LSD. I was up for it. I was quite distressed about the situation with Terence, and I thought the experience might help me get some perspective on it.

The material we took was in a crystal form, in a tiny vial. We had no scale and had to “eyeball” the doses as best we could. However much I took, it was much more LSD than I had ever taken in my life, there was no doubt of that. It was one hell of a ride. The effects came on within minutes, and within minutes I was so out of it I was oblivious to everything except what was going on inside my head. And that was all about Terence and our shared dilemma. I saw the tumor as an evil black spider extending its lethal web through Terence’s brain; he was an insect futilely struggling in that web, desperately seeking an escape. A voice kept insisting, “The only way out is to go in.” I took that to mean there really was no escape, that death was the only escape. I confronted that idea with all the grief, anxiety, and fear that I’d been keeping bottled inside. I thought about Terence’s death, and what that would mean, and the aftermath, and the sadness and grieving that would inevitably follow. It was as if I had been granted an opportunity to experience all of that grief in advance, go through it then and there and get past it, in order to cleanse my system of all that negative energy and be ready for the ordeal that lay ahead.

There was nothing fun about the trip, but it was healing and therapeutic in the slap-you-upside-the-head way that psychedelics can be sometimes. It was a hard lesson, shoved into my face: “Deal with it,” was the message. “You can’t escape from this ordeal. The only way out is to go in.”

Terence finished his radiation treatments in early August and settled in at home, waiting to see what would unfold. Klea and Finn spent a great deal of time with their father that summer, and indeed over the hard months after it, a crucial part of the story they alone can tell, as the most important people in Terence’s life. Various friends traveled to Hawaii to see him. Caitlin and I spent time with him, as did our Aunt Amelia. Terence grumbled about having “that old battle-ax” around, but there was no stopping her. Amelia could be as gruff and abrasive as Terence when she wanted to be. In the end I think he appreciated her effort. It could not have been easy for an eighty-six-year-old woman, but she insisted, as if to say: I’m here, I love you, and you’re just going to have to deal with it.

Shortly after Caitlin returned to the mainland, Luis Eduardo showed up. We were preparing to initiate the program of shamanic surgery I’d discussed with Terence in the hospital garden. Terence didn’t seem very enthusiastic about the idea. “What’s this all about?” he asked me. “What do you think is going to happen?” I told him I didn’t really know. At best, I said, we’d cure his cancer and he’d be OK. If not, I hoped he’d have an epiphany of some kind that would help him come to terms with the fact of his illness and the possibility of death. He was skeptical.

“Let’s just try it,” I said. “We don’t know what will happen. Eduardo, your best friend, has come all this way to help you, I’m here for you, we all love you; I think you should at least try.” Reluctantly, he agreed.

But in the end it didn’t work. Terence was not spared, nor did our actions really lead him to a moment of insight. I had secured some strong Ayahuasca brew, but there was debate about whether Terence could safely take it. The thought was that pure psilocybin would be much easier on him.

Over the next couple of weeks, the
ayahuasqueros
at least had occasion to take plenty of these medicines. We sang
icaros
, we blew
mapacho
, we sucked
virotes
, we massaged Terence’s head; we danced around and made the hypercarbolation scream. We told Amelia what we were doing, and she totally got it. In our sessions, we sat around a small fire in front of Terence’s deck, and when we weren’t shamanizing, we talked. Terence only took a small amount of psilocybin, and for him the effects were light and recreational. He was obviously enjoying himself, but our conversations had no depth; Terence described them as a mile wide and an inch deep. I didn’t know how to steer us in a more productive direction. Our recent tensions had not been entirely forgotten. My brother obviously distrusted me and held himself back.

My consoling thought was that no one could decide for another how to confront death. Terence had to choose his own way, which he bravely did. We tried to help him, tried to ease the pain for him, and for others around him; but like his other treatments, shamanic surgery had failed.

August faded into September. Luis Eduardo returned to Finland, and I went home to Minnesota. Terence, who was still feeling pretty good, remained on the Big Island with Christy. The AllChemical Arts Conference took place in mid-September and by all accounts was a great success. His wider community was aware that the event was quite possibly his last major public appearance, and that put the focus even more on him. He gave some of his best talks and interviews during the conference, which I think marked the start of a gradual process of letting go, both for him and for his fans.

By late September matters were becoming urgent; the effects of Terence’s treatments with the gamma knife and the subsequent radiation therapy were beginning to wear off. The tumor’s growth had slowed for a short while, but now it had resumed. I continued to search the literature for a clinical trial that might prove to be the escape hatch we all were hoping for. Finally, after evaluating many clinical trials and consulting with Terence’s physicians and other experts, we found a clinical trial that seemed to hold promise. It was one of the early experiments in gene therapy, an industry-sponsored Phase I clinical study being conducted at the University of California, San Francisco Medical Center, home to one of the best neuro-oncology departments in the world. We were initially concerned because Terence’s oncologist in Honolulu had assessed his tumor as inoperable. But his surgeon in San Francisco was confident the tumor could be removed as the first step prior to the gene-therapy stage. It seemed like the closest thing to a magic bullet that we had found. It was our best and last hope.

Both phases of the operation went well. Here’s part of the update I posted afterward:

October 12, 1999

Terence successfully completed the second phase of his treatment at UCSF today. He had a craniotomy, followed by additional gene therapy. The surgery was a success by all measures. According to the surgeon…all visible traces of the tumor have been removed. It will take some more time to assess whether the gene therapy has been effective, but even if it was not, Terence has benefitted from the surgery. He is now recovering on the Neuro ICU unit at the hospital.

As far as anyone can tell, he is the same old Terence: sense of humor fully intact, bemused perspective fully functional, and no obvious impairments of speech, cognition or movement. So, for now, it seems that an important phase of Terence’s treatment has been completed. With a bit of luck, the gene therapy will prove effective and may actually amount to a cure, although that is a word we do not use lightly around here. What is important, for now, is that these procedures have bought more time—possibly much more time—while not diminishing quality of life.

Following the operation, Terence and Christy remained in San Francisco, living in an apartment close to the UCSF Medical Center, kindly offered by a friend. This made it easier to check in for the close follow-up that the procedure required, and so far everything looked good. Terence seemed to be rallying a bit. The operation had gone as well as expected, and that alone gave us some hope. Now it was a matter of waiting to see if the gene therapy worked, which would be indicated if the tumor had stopped growing and was beginning to shrink. The next major checkup for Terence was scheduled for late January. He and Christy returned to the Big Island in late October.

During November and December, we were permitting ourselves to think that this high-tech approach just might have worked. The message of my LSD experience six months earlier came back to remind me that the only way out was to go in. Well, Terence’s doctors had gone in and excised the malignant spider that had taken up residence there. Now it only remained to see if, in fact, this procedure had created a way out.

After recovering from surgery, Terence felt better than he had in a while, but that respite didn’t last long. Soon after returning to Hawaii, he developed a great deal of pain in his left leg. His doctors thought that both his pain and loss of strength might have been related to his steroid medications, which can break down muscle tissue. Terence had been taking steroids since his initial diagnosis, and his doses had gone up following the operation. The doctors suggested that he gradually taper off the steroids, and by late December he had; but after a brief period when his symptoms seem to improve slightly, they got worse.

It was a dreary Christmas for all of us. Terence and Christy remained in seclusion on the Big Island, the situation becoming ever more dire. I was in Minnesota with my family, trying to pretend that we were celebrating a normal Christmas, but we all knew better. Minnesota was in the grip of its usual icy winter, and I became obsessed with keeping the fire going in the new woodstove we’d installed a few months earlier as our single hedge against Y2K. At least it was something I could do: keep my family warm in the face of winter and impending global disaster.

In a bizarre prefiguration of the events predicted for 2012, much of the world seemed on the verge of Y2K hysteria. The computer wonks were predicting the imminent collapse of civilization due to the so-called Millennium Bug: computer systems the world over would abruptly malfunction as their clocks switched over from 1999 to 2000. By convention, computerized calendrical systems used the last two digits of the year to program dates instead of all four digits. The fear was that these systems would mistake 2000 for 1900, and the entire global Internet would crash, triggering a new dark age as our short-lived digital age ended in chaos.

As it turned out, nothing much happened. Whether the worldwide preventive measures actually worked or the danger had been exaggerated was never clear. (I suspect the latter). Whatever the case, Y2K turned out to be a giant non-event. Back on the home front, we were so preoccupied we barely noticed.

Terence and Christy returned to the Bay Area for his checkup in January. I was there as well, having put my work and other activities aside. They were planning to continue on from there to the Entheobotany Conference in Palenque in mid-February, but that was looking unlikely. Terence’s problems had worsened. An MRI during his checkup revealed that the tumor had metastasized. This was unexpected and disturbing; it is extremely rare for glioblastomas to spread beyond the site of initial growth. There was no way to determine if this was an unintended consequence of the gene therapy, but it may have been.