Perspectives, Sarcoma

Perception

Clinic ended in the usual way. A daughter and her father came to have a closure visit. The Cancer Center was quiet as I made my way to the room where they were waiting. I walked in and we hugged each other deeply remembering the moments we had spent and the many struggles we had been through. My closure visits are usually at the end of my clinic visit, but there was something different about this one.  She looked down as she talked, her voice strained and her mind rattled as she spoke. There were questions this time on what happened, on why it happened and “please explain it to me?” She continued, “where is science to answer these questions, what is pain? And how is it that we don’t know more about what to do?” She sobbed “I saw things I did not want anyone else to see”. She re-iterated “don’t want anyone to see, things that have changed the reality around me”.  Her mother had died, her close friend, her confidant. “When my mother was coming for her chemotherapy, people would say to me I am sorry, and I would look at them and say “sorry? This was a chance to hang out with her, to be with my mom, to lie in the bed and bond as we watch television and shared our stories”.

This was a very young woman who got exposed to death at an early stage in her life. She wanted to talk. Her speech was pressured, she touched my heart. No, she penetrated ripping right through. She vividly described all the stages that she had witnessed as her mother became acutely ill, her voice was shaky, and I could hear her unrelenting grief as she told her story. She had met death, and it had changed her. She told me of how when someone asked her “how she was?” She would just look at them as if they had asked her something that did not make sense. They should rather ask her who she was, because death had left its mark on her, embedded itself in her history and future. Death had become a fact for her, a part of her life now intimate in the details she shared of what it really meant to lose someone dear. She did not search for words, she found them and the courage to share them with me for which I was honored to receive them. In this discussion, many doors opened as we settled and submitted. Her mother was so unique as her cancer was a rare diagnosis with sparse cases and documentation on its treatment. The husband looked at me and asked “did you learn something from this?”

I explained to them both that to me each human that I treated was like a piece of a larger puzzle I was trying to solve. I was trying to connect the jigsaw pieces collaborating with researchers in Iowa and in the nation. How each person gave us clues and a wealth of information that was used to create a network for us to better understand what at this moment I was having a hard time explaining. She asked me why is that? I explained that her mother’s sarcoma diagnosis was rare and that progress in these cancers was slow. I explained that the knowledge would eventually come to explain it but it did not exist now. In Iowa we have built a resource that is proving powerful in bringing researchers together uniting them in a common cause to decipher the cancer code. I have often quoted it as being like a coral reef in an ocean that is formed slowly over time, but allows the development of ecosystems of different living organisms that can thrive and be nourished.

Her questions continued, and I was stunned at the depth of their feelings, their attachment, and their grief. She traversed the mindset that death is something out there to fear, avoid, kick and scream about, the perception of the masses. To her it was present, it was unexplained and it was intimately associated with her recent loss. They were accepting the ambiguity and mystery around the other side. Our human bodies are vulnerable, and our lives are delicate. And death is bigger than life because it is inevitable and certain. She demanded answers.

They thanked me and made their way to leave. At the doorway, she paused; her tears began to flow again. As I sit tonight I ponder that image. How many of us stand at the doorway of death not fully understanding its implications in neither our lives nor the provoking questions that erupt when it happens.

-Mo

 

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