We tend to mostly think of the process of dying from cancer as a depressing downward spiral of debility, with various parts of our bodies failing as we become as dependent as a newborn. Because John’s end-of-life trajectory was quite the opposite, I have decided to share his story so that others might find hope.
John was admitted to the hospital when he began to experience extreme pain in his lower back along with a swollen, bright red, hot-to-the-touch right leg. After an inconclusive week of testing and imaging, his radiologist told us that the only test that could possibly definitively diagnose whether he had blood clots blocking his circulatory system had a high likelihood of killing him.
As John re-stated his situation more succinctly for his doctors, “So, you’re saying that nothing can be done to help me?” The palliative care doctor who was by now involved was brutally frank: “Yes, there’s nothing more to be done medically. You can agree to the exploratory radiological procedure and risk dying here, or you can go home to die. What do you want to do?” John replied with no hesitation,
“I want to get out of here immediately. I want to die at home.”
When he was released from the hospital, we were told that John’s death would probably occur within 1-2 weeks. He arrived home to a living room filled with a hospital bed, a bedside commode (too small for his grotesquely swollen lower body, but that’s another story), a wheelchair (also too small), a walker, and all the accoutrements for maintaining a PCA pain pump in the home. His legs and lower body were so swollen from peripheral edema that he could not walk at all. He was on a pretty heavy duty dose of IV Fentanyl to control pain and was mentally fuzzy from the pain control drugs and from the build-up of ammonia in his blood due to his severely compromised liver. It did seem that the end was near.
Two weeks later, John got dressed for the first time since coming home, walked unaided and very steadily with his walker, sat down at his computer and wrote E-mails to his friends. His doctor said to him that afternoon,
“You have outlived your diagnosis.”
The next day, the upward progression of his weight gain began to trend downwards at a rate of 2 pounds per day. By the end of that week, he had lost 15 pounds of fluid. At that time, he requested that the dosage of his pain control meds be reduced downward. He felt that the current dosage was making him too groggy and interfering with the many projects he had lined up for himself.
Five weeks after being released from the hospital, John decided that he wanted to abandon the hospital bed in favor of sleeping with me in our bed. The next day, he started walking laps around the house and doing bicep curls with hand-held weights. That night, he ate dinner at our dining room table with me for the first time since coming home. Two days later, his pain pump was disconnected and he transitioned to oral pain meds, thereby gaining some long-awaited freedom from being tethered to his pain pump.
Thirty-five days after John’s medically projected date of death, he no longer needed any of the hospital equipment that had accompanied him home. Our living room became just a living room again– the sickroom disappeared. As John explained it to friends,
“I ditched the hospital bed, the wheelchair and the pain pump.”
The bedside commode was relegated to a dark corner of the garage, out of sight. By this time, he had lost almost 50 pounds of water-weight buildup.
Never much of a fan of exercise for just for the sake of exercise, John next announced that he was going to return to his post-surgery recuperation plan of walking up and down our very steep driveway. He had this all measured out: two round-trips up and down equaled 1/2 mile. Although he walked slowly, the fact that he actually made the first 1/4 mile round trip successfully was a giant milestone. It didn’t take long for him to work up to 2 round trips up and down the driveway (a walk that makes even fit people gasp…), and another 6 days later, he was doing 3 round trips. Two months after his hospital release, a month and a half after he was supposed to be dead, on New Year’s Eve, he made the wry comment,
“My idea of fun on New Year’s Eve is two bottle rockets and a stool softener.” (!!!)
During this time, John finalized a deal to sell his entire workshop full of tools from 3 generations of woodworkers in his family to a friend, and to have that friend completely renovate the garage-turned-workshop. His plan was to restore it back to garage status so that our cottage could be rented to provide revenue for me after his death. He intended to supervise all the work himself. Though it seemed to me that this must have been heart-wrenching for him, he insisted that he felt good about being able to do things like this now that would save heartaches and headaches for me after his death. His clear-eyed, unemotional approach to his own death never ceased to amaze me…
After accomplishing his goals with his former workshop, John’s focus turned completely to using his mind to trade in the stock market, with the goal of “making money for Rachel” so that I would be as financially secure as possible after his death. During this time, he revealed the very last thing he aimed to accomplish before his death.
John wanted to ask our Tibetan lama friend to fly over from California to give him special teachings on what happens at the time of death. Let me be very clear: John was not a Buddhist. Spirituality for John expressed itself through his deep connection with the ocean. He had never espoused any particular organized belief system. But he had heard me talk about how Tibetan Buddhists had been studying death for over 2000 years and was well aware that I had sponsored our lama friend to give teachings in our community on this subject aimed at healthcare professionals. John wanted to cover all of his bases, and he wanted to hear from an expert on the subject. He had great faith that our friend was “the real deal” and had derived much comfort in knowing that the 400 monks, nuns and yogis in this lama’s monasteries in Tibet had been praying for him continuously for the last 3 years.
John was quite specific about the timing of this teaching: he wanted it to take place in mid-April. This was mid-March. The problem was neither the lama nor I nor our dear friend the hospice nurse thought that John would be able to hold on for that long. But John was adamant about the date. He was going to be busy with the stock market until then.
But even though John was quite clear about his own death 2 months before it arrived, unfortunately his palliative care team was not. His home health nurse continually talked to him about what “a healthy man” he was, cheerleading from the sidelines about how he was going to be “just fine.” She wanted to know what he planned to do with all his “spare time” after he finished cleaning out and renovating the garage. Let me be very clear here: although John had improved dramatically in many ways, there were new health issues cropping up constantly that made it impossible for us to ignore that his body was deteriorating. He very patiently explained to the nurse that he was moving out of the body (“because I can’t do body things any more”) and into a mental space. There was a dreadful irony in watching John doing what we called “hospice-ing” of his in-denial palliative care nurse by gently explaining to her that he felt that he would be dead in a few weeks. His prediction was very close to the mark.
Mid-April arrived, and John was still managing to stay most clear mentally, with occasional bouts of disconcerting disorientation. On the day the teachings were to take place, John was ensconced in his favorite armchair, propped up by pillows and quite alert, basking in the joy of being re-united with one of his favorite friends. He listened intently to the teachings, his cheeks rosy and a completely rapt expression on his face. His attention never wavered. At the end, he asked several specific questions and received very detailed answers. When I asked him that night how he felt about what he had been told, he said that he was no longer afraid of dying and that he felt great peace. By the next morning, his attention had clearly shifted inward and his connection with the external world had loosened. That evening, he stopped eating.
John had accomplished every single task that he had lined out for himself. He died in great peace 2 weeks later, five months after his doctors had predicted. John really lived fully in those five months, given the constraints of his disease. Those five months and all the invisible emotional and spiritual work that John had been doing in the last two years were a true testimonial to the reality that healing and death are not mutually exclusive.
Did this post shed some light on your own journey? That has been my sole goal in taking a year of my life to distill all that we learned during our four years of living with colon cancer, with the fervent hope that others who follow in our footsteps might suffer less by benefiting from our accumulated wisdom.
This is the kind of information that, until the publication of this book, could only become part of your database by living through it and realizing in retrospect how all the pieces fit together: colon cancer from the patient’s and caregiver’s point of view. $9.99 seems like a very small price, considering the emotional and physical suffering you will likely be saved by learning from our experience.
Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze http://www.amazon.com/dp/B004T3331M can now be read on any computer or other reading device. The reader interface is available free from Amazon and is downloadable in seconds.
I will realize absolutely no profit from the sale of this book. All proceeds from the sale of this book will go towards the support of the 400 monks, nuns and yogis in the seven Tibetan monasteries of Tulku Orgyen Zangpo Rinpoche, who have devoted their lives towards building the foundation for peace and freedom from suffering for all beings in this world.