Patient Care, Perspectives, Sarcoma

Eureka!

As I sat and watched, with awe, Vice President Biden’s summit speech on his vision of the cancer moonshot, I came alive and transformed… I felt empowered and validated. Oh the calamity of thoughts that went through my head. “By golly he’s got it!” Everyone has been there at some point, that delirium that accompanies figuring something out. “Eureka!” I thought. Mine hit all at once, and I have been reeling ever since that day of June 29th but my mind is settling to tell you a story. My friends, I am back, maybe not as often, but I will tell you I never left.

He sat across my stool afraid. He was bright eyed, sharp and thinking through the things I had discussed. “You are going to do what?” he asked, “Inject my sarcoma with a herpes virus?” I remained calm but my passion was bursting out of me because I was excited. This was my idea, an idea that has been brewing in my mind for the last 2 years, an idea that allowed me to use my knowledge to help someone, a clinical trial that I wrote. I don’t know how my patients do it; they find the wisdom, the courage, the generosity and open-mindedness to accept my words. Was it that I danced in front of him telling him about the science? Was it the cancer that inspired him to be creative? Was it his immense trust in me? It did not take him long to contemplate the proposal, to believe as he told me. Enter Subject 001.

Cancer, as VP Biden clearly remarked, is a threat the human race can unite to double the rate at which we make progress in trying to push and propagate the knowledge we have to solve its mysteries. As I reflect on this statement, the one person who comes to mind is subject 001- I get the equivalent feeling that we as humans were able to conquer space to get to the moon and back, I reflect on the day I put my patient on my trial, a trial that was unique in its rights, different and innovative. Subject 001 to me, is the first person on the moon. What a feeling!

Eureka! The day has come for us to find out that I am out of a job, that cancer has been cured, that the world is at peace, that we have overcome our fears and that we have won the war against despair. Yeah sure, we all dream. And maybe that is what makes us achieve our dreams; our hopes, our engagement and our efforts. Perhaps it’s a man standing up and saying, “What’s wrong? Why can’t we do this?” I sometimes recognize how hard it is for a General in the army to will his soldiers to go to battle. This is a war, an urgent need to develop cancer breakthroughs and a strong message for us to do things without submitting to bureaucracy, greed, and negative inertia.

“My patient is interested in joining this clinical trial” the bark of a General that does this daily. The coordinator picks up her task; she is as excited as I am. What drives people to work so hard behind the scenes to actualize a clinical trial still fascinates me. It is this ownership, this dedication that can turn the tables in this fight against this devastating disease… let’s not turn against each other, retard each other’s progress, allow politics and competition to stop us.

Don’t just sit there, do something! Don’t put it off for another day, don’t lean on reasons not to act, but rather seize the moment you are in and become part of the history-changing initiative, become a part of how we revolutionize cancer treatment.

Mo.

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Perspectives, Sarcoma

“Notes on the Journey: Living with Sarcoma and Hope”

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.”

You can also purchase Laura’s book on Amazon.com.

The book signing is from 6:30-8:30pm tonight at St. John’s Lutheran Church, 4501 7th Avenue in Rock Island. Mo will make a few remarks at 7pm.

Laura Koppenhoefer

 

 

 

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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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Melanoma and Sarcoma

Bounce.

“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.

Mo

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Melanoma and Sarcoma

I do not know.

“Why me?” she asked me today in clinic.

I’m home and thinking and this question just will not leave me. Really, why? I honestly do not know why.  It is a plaguing question. Many have asked me and I search hard for the answer. I am not about to answer this sitting here on my couch that’s for sure.

I have taken refuge in science and in the minds of the scientists around me. Science has answered many questions for me and has given me the ability to come to patients and explain their disease. And it is important to me to explain disease. It’s why I became a physician.

I have spoken of my heroes who take chances for others and participate in clinical trials and research to help us answer the “why me’s?” When I first started working in the academic world I quickly found that science helps reveal truths and prevents bad practice. Collaborating with more minds helped me make better decisions for my patients. Today I share what I sometimes come home with and some of the questions that make me freeze and I simply say “I do not know.”

 

“How do you know you have the best treatment for me?”

“What if I could find a better treatment elsewhere?”

“There is this miracle drug in Mexico. Do you think this is a good idea?”

“I have radicalized my diet to fight this. What do you think?”

“Am I just a guinea pig?”

“So you are saying there is only a 5% benefit from this treatment and it has all those side-effects?”

“Why should I do this treatment? Isn’t there anything better?”

 

These questions linger in my mind and make me wonder. And I do not know the answers. I task my patients in being the answer, in helping me understand, in helping others. It truly is a sacrifice of a higher order, of our human nature. I have learned to be honest with them, share my thoughts, my biases, and my lack of knowledge. I sound unsure, incapable and incompetent as I argue my case in their presence against cancer. It is a huge undertaking to try to explain this disease. I often find myself saying ” I am a good salesman and I am about to sell you a crappy car”.

Our treatments though exciting and innovative are still primitive. Investing in clinical trials and basic science, and research is our only hope to fight against this crippling disease. How does on choose what is best for a patient in an evolving and erupting world of knowledge. I push the buttons of those around me that dare to challenge the life around us and dare to dream of cures. The Wright Brothers wanted to fly. They created models and tested them, now humans can fly. I work with incredible talent, that tests their ideas, and think about what’s next. And for those who know me – I do push hard.

Michael Henry, PhD, the Deputy Director for Research at the Holden Comprehensive Cancer Center, has become more than a collaborator. Perhaps I can persuade him to talk to you about his research interests and how he made me see cells differently, opening my mind to the secrets of cancer biology and to ideas that contradict the normal we have come to accept. Together we are forging a stronghold in our understanding of cancer – our movement is only forward.

Thanks for reading.

Mo

Dr. Michael Henry and Mo

Dr. Michael Henry and Me

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