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About the Manner of My Death

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[In case you’re worried, I’m feeling fine, still have No Evidence of Disease and am not in danger of dying soon. My clinical trial oncologist thinks I have a 75-80% chance of making it to 2016 given the current lung cancer treatment options – longer if new treatments are developed in the next couple of years.]

I have lost friends recently to lung cancer, and fellow patients have been discussing hospice and the dying process in the Inspire.com Lung Cancer Support Community. This got me thinking.

I do not fear death, but I must admit I do fear parts of the dying process: stuck in bed, unable to express my wishes, being totally dependent on others to take care of my basic needs. I watched both parents die of dementia, and I know they did not want to go that way. I don’t either.

I’m trying to do my thinking about the manner of my death now when I’m relatively clearheaded and comfortable, because I want to explain my wishes to my family in advance. The problem is that none of us can know for certain what the manner of our death will look like. My lung cancer might return only in my lungs and gradually steal my breath; that can be controlled by pain meds. However, I might experience substantial brain mets or oxygen deprivation that could impair my thinking and gradually take away who I am. That second scenario is the one I fear most. I fear its impact on my family, who would have to watch my cognitive decline as well as care for my physical needs. Losing my parents by inches was hard on me and my siblings, and I don’t want to be the source of that pain for others.

While part of me would like to stay at home as long as possible, surrounded by familiar things and people and pets, another part of me thinks the burden on my family would be too great. I’ve seen the physical toll home hospice can take on the caregiver. Perhaps being placed in a hospice facility when the time comes would be a better approach.

I’m lucky to have a third option. I’ve recently been reviewing my state’s Death with Dignity Act. Under this law, terminally ill patients have the right to self administer meds that will end their lives. Maybe I’ll throw a party to say my goodbyes, then go home and decide the time and manner of my death myself. Yet … are there existential consequences for messing with the Fates timelines?

The angst continues. At least I have choices.

Death and the Cost of Immortality

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Western culture is obsessed with avoiding death. For many, it is a terrifying concept.

Yet death is a natural part of the cycle of life throughout the universe. When plants, animals, mountains, planets, solar systems, and galaxies die, their components are released and transition to become essential components of other lives. If stars had not completed their cycle and died violent deaths, the elements necessary for life elsewhere would not have been created.

Some today seek immortality through plastic surgery, elixirs, and cloning. Others imagine a future with cryogenic preservation, or uploads to new organic or inorganic bodies. All of these options consume significant resources. In most cases, the technology is (or would be) affordable only by the upper levels of society.

Speaking as one who is consuming more than my fair share of resources to survive cancer, I wonder whether I’m giving back more than I’m taking from Earth’s resource pool. I’m not afraid to transition to the next stage of existence, whatever it may be, but my autistic son isn’t ready for me to leave him yet.

If people wish to love well and experience life to the fullest by means of a healthy lifestyle, more power to them. However, when we start seeking to extend life with artificial means, I wonder if perhaps we’re being selfish. Might those resources be better applied towards ensuring good water, food, and health are available for present and future generations?

Braving End of the Tunnel Blues

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I’m generally a upbeat person. I try to find something positive in each day, even when the only positive I can find is that I’m still breathing.

But every now and then, lung cancer messes with my head. It’s hard to completely eliminate the memory of an October 2011 PET scan image showing a hot spot outside of my chest, my pulmonologist calling after the biopsy to say my lung cancer had metastasized, my oncologist apologetically estimating I had perhaps two years to live. (Granted, he only gave me a prognosis because I pressed him for one. He has since happily recanted.)

I’ve already had two recurrences, both found just weeks after the end of a chemo regimen. I will be in treatment for the rest of my life. My current targeted therapy has eventually failed for everyone who’s taken it. Chemo eventually stops working because the cancer develops resistance to the drug.

Every two months I have another scan to see if the cancer has progressed yet. My cancer is aggressive and smart. When a treatment thwarts its goal of world domination, it mutates and renews its efforts. And the next treatment option may or may not be effective.

Every now and then, these facts overwhelm me, and I cannot stay positive.

Many people who experience near-death report that when they died, they saw a tunnel, walked through it, and emerged into the light before they were brought back to life.

Every now and then, the facts overwhelm me, and I see that tunnel, or at least this end of it. I become acutely aware of what cancer has stolen from me, and how little time I might have left. I start thinking of important tasks I want to finish before I die, of family I will leave behind, of experiences I will never have again.

I call it “End of the Tunnel Blues.”

When it hits, I usually brave it in silence. Few people want to dwell on my possible impending demise. Some are gobsmacked and uncertain how to feel or respond. Others feel compelled to make me feel better. It seems the only people comfortable talking about such things are those who have seen their own tunnel. Other incurable cancer patients like my friend Jay Lake know.

The feeling usually leaves after an hour or two, but each episode leaves a mark on my soul.

If you have a friend facing a life-threatening or incurable illness, they may have periods of the End of the Tunnel Blues. If they mention it to you, try not to freak out. It’s normal. Just listen and, if you can, let them know you’re honored they trust you enough to share their deepest feelings with you.