Tonight Mo will be in Rock Island, Illinois signing books with sarcoma patient and new author, Laura Koppenhoefer. Mo wrote the forward for her book “Notes on the Journey: Living with Sarcoma and Hope” and all proceeds go towards his sarcoma research program. Below is a brief summary of the book from Laura herself.
“When I show up at the clinic for appointments and chemotherapy, the day starts with lab work. Within the hour Dr. Mo will know what is going on “inside me” and make decisions about my care. This all seems routine to me now. Three years ago at my diagnosis of sarcoma nothing was routine. I started writing on Carepages.com to help me sort out this journey with cancer, and communicate that journey with my congregation, family and friends.
Three years later, I am still living with sarcoma and know a lot more about myself than what shows up on lab tests. I know about courage, hope, my faith, my need for community, the importance of top rate medical care at a sarcoma center, how to “read” what my body needs, and more. I also know that we don’t know enough about sarcoma.
“Notes on the Journey: Living with Sarcoma & Hope” is a compilation of updates from my Carepages, with a foreword written by Dr. Mo. All of the proceeds from the sale of this book are going to support sarcoma research at the University of Iowa Hospital and Clinics Holden Comprehensive Cancer Center. To learn more about this effort, buy a book, link to my Carepage or other sarcoma resources, check out the Foundation’s page at www.LivingInHopeFoundation.org.”
Defeated. She sat there, her swollen abdomen so uncomfortable. The news of her heart function excluding her from the clinical trial I had planned on enrolling her in like a trigger to an explosion brought a flood of tears. I pull up a chair and hunker down for my discussion. It is just that, hunkering down. Unafraid to state the truth that things were not going well. I have found myself lately quoting Voltaire quite a bit, “the art of medicine is to amuse the patient and let nature cure the disease.” She was clearly not amused, and nature was not going to cure the disease. Rather, nature was the disease.
My hands grappling with the tissues to absorb the tears. A conversation begins my words weaving a fabric of understanding. We talk about getting her comfortable, removing the fluid, helping the heart a little bit with a medication, and starting our treatments. It was Interesting to see her tears drying up. And she looks at me and says “you are making this up as you go along”…..I smile. Insightful she reads my mind, yes most of the time that is what I do. I am presented with a difficult scenario and as I think out loud, I find the answer. Words buy my brain some time to think, the humor facilitating the delivery of the plan I have to give. The laughs allowing the pauses to deliberate an action that I myself might not have been aware of.
I was in awe of her perception of me. She was slowly coming out of her defeatist state, and she was starting to believe that she could depend on me again. That is the “art”………..oh Voltaire how right you are. Amuse the patient and nature cures the disease. Transformed, my patient begins to see the words I share, the plan of her care now becoming a reality in her brain, she logs on to hope, she redefines trust and she looks at me and says “ you are the man with the plan.” Her husband watches this eagerly, asks the right questions and becomes engaged. She wants to not give up, how many have walked this path. She is smiling…..oh yes this is my victory.
The question is why do they come defeated? I watch this human struggle, and I marvel at how it is overcome………….every time……even if the end result is death. It is not death that we need to conquer, but rather our feelings of defeat (perhaps that is the disease). Death is a part of life, and cancer is a part of nature. It is not a victory for cancer, but for the person who learned quickly to embrace their health, their fight, and their treatment and own it, that even death can be conquered. My friends, it is in our human connection we find the strength to fight some of the hardest unknown that I have come to respect.
My patient sat across from me and said “You are the expert.” My mind began a long walk on a desert land, nothing as far as the eye could see. I reached a tree and sat down for a little to rest. Then stood up and continued walking. A nomad with a keen eye in the desert searching for water and life, finding answers as he continues his journey. I wonder how much my patients actually think I know about cancer. The way I see it, it’s the time I sat in the tree to rest, where the knowledge I have helps them navigate difficult choices. Science is the compass I hold, like the North Star shedding light giving direction to where I go next, this decision I make under the tree.
Here he was faced with his cancer returning it was his second visit and it was a short interval between the time I had told him and his return to see me. I gave him time since I broke the news in such a short time. My style is to stagger the information and give patients some time to receive the news, absorb the facts, grieve their health, rest, pick themselves up, and come back to fight. This is where I sit in the shade of the tree and conjure up a plan focused on where I am going to head out next. My thoughts questioned, “I am the expert?” But the desert is vast.
Science helps me read cancer. How do you explain that to the mind that eagerly awaits your decision to help them? So I tried, I asked him to imagine an alien land where you met the natives and you could not speak the language and you are trying to make sense of what they are saying to you. He looked at me and said “you understand this more than I do”. I did have a plan for how to treat him; I always have something I can offer to patients who pick themselves up. Some patients interpret this as me giving them hope. I, on the other hand, see this as their success in how they refused to fail. Like the nomad who looks up at the stars and knows where he will go next, I use what I know to guide them across the dangers of the terrain that they are being forced to navigate.
Fear is very real to patients. I saw that today in his eyes. What’s next? What’s up your sleeve Mo? I take refuge in the shade of the tree that will offer a moment to contemplate. The uncertainty of it all, yet the nomad finds his way to an oasis almost every time. Armed with his knowledge of the stars and the understanding of the hazards of the desert, using his patience, his wisdom and his passion he leaves the shade of the tree, pushing forward on his journey to find that which will quench his thirst. A powerful drive coupled to an amazing will of a patient who stands up when the cancer thinks it has succeeded.
“It’s a fine line between optimism and pessimism” he said to me, and I looked at him staring blankly. We talked about how it’s so easy to see things with a half empty glass and how the pressures around us sometimes dictate how we view life as it pertains to our practices and the decisions we face. It could be as Nicholas Taleb would see it, that there really is no glass, but it’s how we in the end decide to see.
It’s been that kind of day. Bounce. Like a ball. I have to have the spring to go from one patient to the other. “Your scans look great” ……….”I am sorry I have some bad news”. Not much more to say when the scans are good; good news brings a few laughs and off they go- anxieties abated until the next scans. Bad news brings much more discussion, “is there hope? can we beat this?” Like the ball, I am elastic ready for both situations; the good news helping me spring back from the collision of the bad news. I think I am answering the question I am sometimes asked when my patients say “how do you do it?”
I have sat alone in a doctor’s office in silence waiting to be seen. That silence is unbearable. And all I needed that day was an injection into my shoulder. I dislike making patients wait to hear good news. I yell out loud “yes!” after looking at a scan, springing out of my chair like a kid to get to the person who gets that good news. It’s amazing to watch relief. I have gotten good at reading the faces of my patients.
Bad News. I stare at the scan disbelieving. A meticulous and wise mind takes over, filled with understanding of the greater mysteries of life that the science I know helps me unravel. I sometimes find myself thinking about my own mortality, my heart is heavy, but this when the person waiting really needs me. They do not need me to feel sorry, they need me sharp, ready to navigate and able to get them through this. Like a pilot in a bad storm, as a passenger who knows nothing about flying, I hear myself saying “he better land this plane”.
I want nothing more than to deliver good news to every room I walk into. Reality says differently. I find myself thinking today mostly about the bad news I delivered, not as a sympathetic person but as a physician needing to find the answer to help land the plane, weighing all the odds and stretching my mind to figure this out. Perhaps the answer lies in tomorrow. I have to believe there is an answer out there, that some day while sitting listening to a researcher present his work or explain a phenomenon that there is enough talent in the room to figure this out.
I bounce in and out of rooms, between today and tomorrow, between discovery and a dead end.