He has a terminal diagnosis. It is taking him slowly. No one can know how long he will last. It is weakening him and that is hard for him.
It was a routine clinic day for me. I was bopping from room to room working through my day trying to keep on time. I hate being behind in clinic. I keep pushing to get my notes done between patients. I rapidly scan the chart for the next patient. I see that he was recently hospitalized. In the hospital he didn’t respond very well to the treatment. He is home now but it doesn’t look very good for him.
When I enter the exam room seeing his face “clicks” something in my mind. I am a visual learner. Seeing him and his wife helps me remember a lot about him. He is a big and muscular man. He is the type that has always been strong in both body but also spirit. He is the type of person that you could rely on to always be there and to always get everything done.
He looks different now. He is clearly being weakened by his disease. His color is not good. It is still him, but it is as though the battery has been partly drained. The strong muscles are not getting the energy they need. This is going in the wrong direction. As his doctor, I do not have a thing that I can do to alter that.
I tried to engage him in a goals of care discussion. I don’t think that the hospital will ever be a good place for him. It won’t help him. It will likely just weaken him even more. If we are smart, we would keep him in his home. I honestly think he will live longer if we don’t ever put him in the hospital again.
If we don’t talk about this proactively the hospital is where he is going to end up. That is the default and easy pathway in the U.S. It amazes me how it is always so much hard work to fight against that. Every time it is heavy lifting. I think – for him – this may be the most important thing that I can do today.
What does he want? What are his goals? What are his fears? What would be an unacceptable outcome for him?
He doesn’t want to be a burden on his family. He will want to be hospitalized purely so that they don’t have to take care of him. His wife was shaking her head firmly. She has no problem taking care of him. I know that we can get hospice or other home care resources to him. Even so he doesn’t like the dependent role that he was been forced into.
It has become clear that this is about so much more than just whether or not he wants to be hospitalized again. It is about how to accept and handle dependency on others. He is not wanting to talk about it, but he needs to. His wife knows it. I know it. And deep down he knows it.
I cross the line and start talking about my cancer journey. They knew I was off on a medical leave. They didn’t know why. I explain it to them. I then take it further and talk about some of the lessons. I talk about what it meant to me to be a man. I had strength. I had stamina. I could push myself. And then I could push myself more. I could work late. If I couldn’t get things done at night, I would secretly set my alarm earlier. It could even be extreme if need be to get the job done. I could and I would shoulder the responsibility for whatever I needed to get done. Sleep was good but I could sacrifice it at will to meet the needs of my work, my family, and my life. Sleep was the margin that I could and would sacrifice.
I told him that this was who I was. He nodded and tears formed in the corner of his eyes as I could tell that we were connecting. This was who he had been.
But no longer.
Shortly before my surgery I lost my stamina. Perhaps it was the tumor. Perhaps it was the stress. I couldn’t keep up the pace anymore. The surgery was staggering to me. It was enough to roll over in bed, let alone do anything physical. Radiation continued the story. Chemo turned it from a short story to a novel.
I told him how my wife insisted on driving me to my radiation appointments. I thought I could go alone. She insisted that I not.
He and his wife started nodding. I had struck another point of agreement and understanding.
I told them how we are in this life together. As much as I wish I could be the man that I was before it was not intended to be. I told them that I believed my Lord had forced me into dependency. Sarah and my family and friends and colleagues needed to take care of me. I needed to accept having others do things. I had to accept the role of dependency.
I told him it was ok. His years of strength and serving and supporting his family were wonderful. In this chapter if he needed to have the roles reversed it was ok. He didn’t have to like it. But his wife and his children needed to take on supporting him.
I told him that his wife and children too were being traumatized by his illness. They have been forced into a feeling of helplessness as they watched him fading. They were desperate to do something to help. In their grief they needed something physical that they could do. The energy that they exerted helping him was the only tangible means that they would have to fight. His willingness to let them come and help him was a gift. He needed to understand that as the leader of his family he needed to help them to be able to grieve. His illness was calling him to do something hard.
He had to let others serve him. He had to accept dependency.
It was ok.
By now, the tears were evident in his eyes. He understood. I understood. We didn’t have to like it. But as strong men, we can and would do whatever was best for our family.
The doors were now open. We talked about home care services. We talked about hospice. We talked about continuing to endure – to work to stay alive – for now – if that is what was best. We talked about the inevitability of death for every one of us. “A recent study has shown that human mortality is close to 100%” We laughed. Then we talked more. In his case now, we talked about the important questions of “how” and “where” rather than “if” or “when”.
I didn’t really change much in terms of his medicines. But I like to think I was a good doctor. I provided the treatment that he desperately needed.
Thank you, Lord, for letting me be your servant in the exam room this last week. Thank you for letting my cancer journey be used for good. It makes it just a little bit better if it could do some good. It is not that I wanted the cancer. But at least, in that moment, it was good.
