we don't really know
B was one of those people who was almost always right. He was a scientist, an attorney, and a scholar… serious by nature and rigorous in backing up his opinion on any topic with data. B would call out any opinion that was not supported by fact. To his credit, he was also open to changing his own opinion if the facts should point in a different direction. This trait is why it took so long to purchase a new house, car, or even dryer - any decision of import required analysis and careful thought. Almost always knowing his business gave B a strong sense of confidence and conviction. He didn’t pursue a course because he sensed it was the right one… he did it because he had already researched and considered all of the alternatives. B said what he meant and meant what he said.
——
I had lunch with a colleague sometime a little later along last falll. She was caring and comfortable around cancer talk and asked about B and how we were all doing. I described his health crisis in July and gave a brief synopsis of the ups and downs since then; it was during a tough period. I protected B’s privacy but let her know that we were on a difficult path. First she said all of the right things - she is an awesome human who I respect and adore. And then she said, “For me, I know I would never end up in that position. I feel so strongly about quality of life that I would choose to stop treatment rather than go through everything your husband is going through.”
“You sound like my husband,” I said. “But, until the moment comes, you really don’t know.”
—--
When we were first married and we still had the time to talk about the bigger questions in life, B was adamant that he would never want an extended period of pain or suffering. This was not just for his own comfort; it was for everyone around him.
Later, when the kids were young, B insisted that we put in place wills and medical directives. Our lives were simple and B pulled it all together on his own using Nolo Press. He granted me the authority for decision-makin, and was careful to tell me what he would want. He did not want his life (artificially, I think he said) extended; he did not want a long period of decline or convalescence. This all seemed so theoretical then.
Later, once he had been diagnosed with pancreatic cancer, but while he was still fairly healthy, we had an estate attorney redo our wills and medical directives, we established a family trust, and we discussed it all again. This time, it was no longer theoretical. We both knew that some terrible unknown could be laying before us. B planned to direct his own course of treatment, but reiterated his wishes should he not become able to. Even with the cancer beast looming, when he was still feeling mostly well, his position remained steadfast.
——
B approached his cancer like everything else in his life - he studied it. He read the full text of almost every peer reviewed article related to pancreatic cancer and of promising new immunotherapy treatments. He was sophisticated enough to quickly understand the biological processes behind the various hopeful articles that were sent to us by well-meaning people… and how they didn’t actually apply to his situation. He was creative enough to see how there could be potential or hope in methodologies being tried in other cancers that he would bring up to discuss with his oncologist. As always, B knew his stuff.
B was confident and informed in directing his own course of treatment. Even when there were grey areas or options without an obvious course, he rarely sought opinions from me or other loved ones. He discussed cancer’s progression and the benefits and risks of different treatment options with his oncologists, but he treated his clinical team as trusted advisors for his own course of decision. This was who he was and I never questioned what he wanted to do.
——
Despite all of knowing; neither of us were able to predict what would actually happen. When the time came, and when we were in the moment, nothing played out as expected. As cancer made each new assault, B sought more paths of hope through his deep scientific knowledge. He was hoping to “kick the can down the road,” staying alive long enough until new treatment options were possible. B continued to choose procedures and treatments after his doctors told him that they didn’t see any option for recovery and expressed concern that he was prolonging suffering. He resisted palliative care and hospice long past the moment that one would have expected because he wanted to be clear-headed and present with us for as long as he could. Even up until the final few days, he would say, “These children deserve a father; I’m going to fight to be that for them with every ounce of energy I have….” From the scientific man… I think he was even hoping for a miracle.
B, who was right about almost everything, was not right about how we would feel, and what he would want at the end of his life.
——
Of course, we know the ending of this story. And shortly after his death I berated myself for not doing more to limit his suffering. But as time passed, I realized that it would have been a futile effort. B went on his own terms and my job was to witness and to love.
I take from all of this two big thoughts:
Someday, when the kids are old enough to understand, hopefully they will see how their father gave everything he had to be their dad for just one more day. I hope this will give them peace and security at a primal level.
None of us actually knows what we will do or how we will feel about some future circumstance until we are actually in the moment. We do not know what it is to walk in someone else’s shoes. We may think we know, but we really, really do not. If there was anyone who would know, who would not be wrong on one of the most essential questions of life, it would be B. And yet he did not know, could not predict, how he would feel and what he would prioritize during his final stand.
This last point means a lot to me as I consider the judgement and anger flinging around our country and the world at large. Each of us did nothing ourselves to be born into our own moment and place. Through another cast of fate, another fortune could be our own. And in that circumstance, we do not actually know what we would do. If I remember this when I am feeling judgmental or frustrated, I became softer. I wish there were more of this in the world.