Diagnosis/prognosis Lung cancer
I can see the large white spot on the PetScan – about the size of a golf ball. Next step is biopsy. But they can’t just drop a probe down my trachea because the growth (at this size, it’s no longer called a spot) is on the outside of my left lung where it can’t be reached from inside the trachea. That would have been the most direct approach . . . Plan B is to approach the growth from the outside via a needle biopsy, but the growth has encapsulated some major arteries, and a needle would have to pass through these to get to the lung. Too risky. Having ruled out Plan A and Plan B, the only biopsy now available to me involved an in- hospital stay for a tracheotomy. A hole would be made in my chest and a probe dropped into my thoracic cavity, from which the growth could be sampled. Based on my own online research and conversations with my doctors, it was clear that the only unanswered questions that would be resolved by a biopsy were “What specifc kind of lung cancer?” and “What stage?” There was no question that it was cancer, and based on the size of the growth, at least a stage 3. This is where things turned around for me. For the last month or so, my life had been measured out in doctors’ visits: pulmonologists hematologists, oncologists, PetScans, CatScans, MRI’s. The future I imagined for myself began with the in-hospital biopsy, recovery from that (hopefully, no complications), a more specifc diagnosis, followed by whatever treatment was recommended. I have seen friends die of cancer. A year or more of radiation, chemo, whatever. Weakness, baldness, pain, nausea – not a good year – followed by death. This was not what I wanted for myself. I am 75+ years old. I’ve lived a life. If I buy, say, another year through treatment, am I going to write the great American novel, visit exotic places, make some major contribution that has eluded me up to this point? Not bloody likely.
So, I opted out of the tracheotomy-based biopsy, seeing it as the first step on a long, downhill ride. “Opted out.” Easy to say. Hard as hell to do. Doctor culture is about saving and/or extending life, virtually AT ANY COST. So much talk coming my way about the uncertainty of my diagnosis, the availability of new and less onerous treatments, my need to heed the advice of the medical professionals. Wife and friends were not happy, tried to dissuade me – more swimming upstream. Thank goodness, my daughter (grown up and with her own very good life) understood where I was coming from, as did the psychotherapist I’d been seeing for unrelated problems for a number of years. For the therapist, it had to do with the fact that my decision was not the result of a “mental illness,” and also because he fully understood my preference for quality of life over mere life extension. Yeah, I was a little nervous in bringing this up with him. I watch television, so I know that the confidentiality between patient and doctor may be breached if the doctor believes that one is a danger to self or others, and I was about to admit to being a very real danger to myself. But as it turned out, these fears were unfounded in my case, and this doctor was extremely supportive and important to me during the early swimming-upstream process.
He also said I was brave, which was nice, but surprising, since it seemed to me I was taking the easy way out. My daughter’s understanding was based on a very simple insight that had come to me years before, but which had been rather academic until now. I told her that when I used to think of my own death it was often in terms of what I would miss – the smell of new-mown grass, a sunset, her 50th birthday. But then I realized that, no, it was not the world that was dying; it was me. After my death, I think, there there will be no me to experience the losses I imagined. I think rather of a dreamless, unending sleep. Consciousness, awareness, perception, feeling – really, anything dependent on the ego to do the experiencing – these things are not part of what I think it will be like for me when I’m dead. (Of course, I could be wrong – whoops!) But my attitude – that I was not depressed, not in pain, not regretful, that I had played my part in the world, and an important part of that part had been to rear my daughter in such a way that she is now a much less neurotic person than either her mother or myself, that she loves her life, and that we love each other. These things were said, these words spoken, and we are good.
It had taken some work, but when I adamantly declined to undergo the tracheotomy biopsy, my doctor was willing to specify that, without treatment, I probably had less than 6 months to live. He referred me to a hospice. Hospices are into palliative care. They are not trying to save or prolong your life. They accept that you are dying, and it is their business to make your dying as easy as possible. To this end, they provide doctors, nurses, social workers, even chaplains, and most importantly, medication aimed at comfort rather than cure, so that it does become possible to “go gentle into that good night.” Not what Dylan Thomas wished for his father, but absolutely right for me. Contacted the hospice. Someone came over to sign me up. (They always come to you – no need to leave the house). Paperwork and an intake interview. Then at-home meetings with nurse & social worker, getting to know each other. They listened to me. An assessment was made, and medications followed. Originally, some liquid morphine to help with my shortness of breath, and a laxative for the constipation that comes with the use of opioids. When pain on my left side entered into the picture and destroyed my sleep, I was given timed-release morphine tabs for the pain as well as a steroid to control inflammation. I was amazed at how easy this was.There was no judgment, no hesitation on the part of the hospice folks, no concern that I’d develop a habit, turn into a junkie, or sell my drugs to pre- teens on the street. My nurse got approval from the hospice doc, called in my prescription, and then it was simply a matter of walking into my local pharmacy and picking up the meds (completely paid for by the hospice). (For a $5.00 charge, the pharmacy would deliver, but I was well enough at the time to go there and get them myself).
Backtrack About 15 years ago in 2003, I was diagnosed with emphysema – not a surprise since I had smoked a pack a day for about 30 years. Emphysema is a progressive, somewhat controllable, but ultimately incurable disease, leading inevitably to death (unless something else gets you first). It was this diagnosis that led me to start preparing for my own death. I had already read Derek Humphry’s book Final Exit: The Practicalities of Self-deliverance and Assisted Suicide for the Dying, originally published in 1991 and updated in 2002. Now I searched the internet for more current information, both medical and legal. Remember that at this time physician-assisted termination in California was still illegal, and so even the most up-to-date internet information could only recount home-made remedies, and these tended to be cluttered with medical, legal, interpersonal and technological obstacles, often involving secrecy and subterfuge. It was under these conditions that I began forming my own end-of-life plan through research and drug-hoarding. I started saving up left-over meds from medical procedures (Hydrocodone, Oxycodone Fentanyl patches). I obtained a large supply of phenobarbital from a friend who had a legitimate need. I was gonna do it myself, at home, in my own way, alone or with only my wife present when, in my opinion, the time was right. This was to be an intimate, private, even ritual event, and I did not want to be in a hospital room — readouts and tubes, hissing noises and strangers in white looking solemn.
Right to die
Hospice will not help you take your own life. They will attempt to keep you pain-free and comfortable until death arrives in its own time. So I joined the hospice, but I kept my own pills. The Right-to-die law has been in a state of flux. When I first began researching self- termination, following the emphysema diagnosis in 2003, physician-assisted self-termination was illegal in California, and remained that way until it was signed into law by Jerry Brown on June 9, 2016. Then, about 2 years later, on May 25, 2018, those challenging the law succeeded in halting its implementation. So, when I entered hospice care on 6/4 physician-assisted self- termination was once again illegal in California. But on 6/15, the 4th Court of Appeal reinstated the law, which I found out about during a routine meeting with the hospice social worker. She also assured me that the application process was straight-forward, and that the hospice could help. The social worker was right. The process was not at all daunting. Most of the work had to do with filling out some relatively short forms, all of which were sent to my computer via email and returned the same way. There is a 2-week waiting period before you can receive the ultimate cocktail. There are fees to be paid. (End-of-life services tend not to be covered by your medical insurance.) There is an at-home meeting and a follow-up with the end-of-life doc, and although it is not required by law, the program I entered required that a doctor be present to oversee my death. At first, this was a problem for me, since I was still working with my original DIY scenario. Once again, I felt like my freedom to choose for myself was being abridged, and that like it or not, I would have to have a doctor in attendance. But, as ever, the devil (or angel) is in the details. The end of life people were great. They understood my wishes and were flexible enough to agree to a scenario which would minimize but did not totally eliminate their requirement that a doctor be present. More importantly, though, was that the presence of a doctor would go a long way toward alleviating a very real and persistent anxiety. My research, both originally in 2003 and then more recently in May, 2018, occurred while physician-assisted termination was illegal in California. Under these conditions, all the “How to” stuff necessarily focused on home-made solutions, and it was abundantly clear that self- deliverance would not be a no-brainer. Things could and did go wrong. Did I have the right meds? Enough of them? Could I keep them down? How seriously should I take the expiration dates? Should I put a plastic bag over my head? Breathe helium? Would I wake up 3 days later in a vegetative state?
All such worries would disappear if I agreed to the unobtrusive presence of a doctor. I met the doctor. I liked her. Her presence will greatly reduce the risk of my botching the procedure. I agreed. As I write this, there are 4 days left of my waiting period. After that, I can call the end-of-life folks at any time, and tell them that I’m ready to go.They will contact the pharmacist. I will pay the pharmacist – a couple of hundred bucks, and the final cocktail and other meds will be delivered to my door. The lethal stuff will be in a lock-box to which the end-of-life doc will have the combination. The doc will arrive the next day, and then the deed will be done. The feel-good part I feel great. The morphine has helped with both breathing and pain, and probably with my mood as well. My appetite is excellent, and I’ve lost 10 pounds. My sense of the future has contracted. No long-term plans. I can’t say that I am now living in the moment – but in the day, maybe. I eat what I want with no concerns for fat, salt, sugar – all those things that make eating fun. I have even imagined taking up Lucky Strikes again, but I find myself un-tempted. I spend some of my time divesting, giving away much of the stuff that I’ve collected over the years. I make lists of things to be done by others as soon as I’m dead – cancel credit cards, insurance, online accounts. I have an advanced directive and a POLST form (Physician Orders for Life-Sustaining Treatment), stating my wish that no medical intervention or attempts at resuscitation should be used to prolong my life. I have a will in place, a power-of- attorney in the name of my wife. Ducks in a row. I now feel that I am in control of my own dying.