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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7 thoughts on “Perception

  1. Claire Barnhouse says:

    Mo,
    As you tell us your journey with your patients being it be good or bad news and as each day comes it turns out differently each time. I wish my mom would of had you for her oncologist. She only lived two months with lung cancer but she would of loved you. As I go to each of my appointments I can say that in the beginning I was so scared of you, just being a doctor I guess, but you have turned that around for me. You and your staff have been wonderful on my journey. I hope I never have to say goodbye to all of your staff or especially you Mo . I know God has a plan for me and I don’t know what that will be but with you and your staff behind me I know the best will come. I pray everyday Mo that you and your team find a cure for melanoma or sarcoma. I feel bigger and better things to come.

    Thank you for being my doctor of science..
    Love you all!

    Claire ( your #1 fan)

  2. It takes time for people to understand the value of each day/hour/minute. It takes even more time to understand the meaning of the Door. The meaning is different for each one and this is the beauty of it.

    The possibility of walking this path alongside these people and families is a gift I will treasure forever. Learning how to be there for them without undue interference is some thing I will still need to master.

  3. I just want to thank you for taking the time to meet with the loved ones of your patient. It is somehow comforting to know that if that time comes for us you will be there for my loved ones as well.

  4. Loni Duncan says:

    Reading your blog and the description of the feeling of loss and life altering way it affects the family is very familiar to me. My own mother died of pancreatic cancer after 10 months, she died in 2011 and I still grapple with her absence almost daily. What hem onc drs do is nothing less than astounding, treating pts who may not get better but never leaving them without hope. Bless you for all you do.

  5. Donna says:

    Dr. Mo,
    I just wanted to take a moment to thank you for your blog. As a Stage IV melanoma patient myself, it’s very clear how much you care about your patients and your work. You are a very special physician and person. : )

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