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.”
Cancer is a crippling disease. It frustrates us. It spares no one when it presents itself to us. For those watching and those it involves. Minds struggle with it. Others find it fascinating. It can teach you everything from finding the will to fight, to understanding the human struggle with death, to elucidating all the facts about how our cells behave. I am wrestling with this frustration today, because I could not explain what was happening to my patient. It was like entering the twilight zone.
I sat opposite her staring in disbelief. A puzzle. Baffled. How could this be? I thought. It was not bad news. It was not good news. It was news that did not make logical sense. I took refuge in the words of those who taught me “treat the patient not the numbers”. There she was sitting looking absolutely great. The treatment she was getting was working for her. But her blood work spoke something different. Impossible; now I know what that word means. How could that be? I kept asking. I left the room walked to my computer, and started asking others what they thought. The more minds I could harness the better the decision I made felt. This is where the proverb of “too many cooks spoil the broth” failed. Here is where I needed as many cooks as I could find. This is how our collective, collaborative consciousness comes together to help me understand what I had not been taught yet.
Some have asked how we do it. “We” the ones who are watching this process. It’s 9:52 pm tonight and look at what has captured my mind. What has me thinking, contemplating and wondering. It’s this curiosity that cannot be destroyed. It makes me walk in places no one dares to. It gives me a depth of understanding that helps me see more about human beings and life than I could possibly explain. I try and I am stumped. So I sit and watch the sun set unable to explain how, knowing in time that someone someday will say “well the earth is just revolving around itself” and that is how the sun sets.
I walked into the room and I could see that the surgeon who had seen my patient before me had already relayed the bad news. The cancer was back. The weight of this news still not complete in her mind. How could it be? She had been cancer free for so long. She had battled it once, and now she is being asked to do that again. On seeing me and my somber expression, she burst into tears. The weight of the situation finally reaching her and she gave in to her emotions.
This cannot be happening. I thanked the surgeon for meticulously working out the plan for me as the patient relayed to me what she was to do. I could be a little lost in this struggle with the patient for a change. Sometimes depending on my day and where I am at I let myself be sucked in. It was that kind of day where I was just as disappointed at the appearance of the cancer that I identified with this person, where I was struggling with many things in side of me and I just could not say much to her.
I reached out to my patient as her tears flowed before me. I told her not to worry, that we would walk beside her on this journey today. Step by step. That it was our responsibility to see her through this to let us worry for her as I tried to help ease her suffering. The easiest thing to do was give her a pain pill, and that brought her around to a better place. I have often marveled at the little things that calm us when we are stressed. The soft touch of a hand, the forgiveness from a friend or the comforting words of a caring loved one.
And she replied “I know you will Mo.”
With the faith she had in me, and the passion in her eyes to live, we began our battle.
Everyone in the room is quiet. I feel like the old man leaning forward looking through my glasses understanding the situation but not fully. As an observer I have seen it, can describe it but I am not experiencing it myself. No one in the room can appreciate that struggle. Three situations have made me think differently this week about cancer and what I do. So lets navigate the spheres of care. The psychological, the spiritual, and the physical realms that humans use to perceive their surroundings.
I walk into a room and pull up a chair. I feel separated from my patient because of a new unfortunate event. I start to talk. The power of words, trying to reconnect and asking politely to let me back into their struggle. My patient said to me “Mo I can handle the pain but not the emotions of this struggle”. I acknowledge this. I do not underestimate it. Anxiety and depression makes a patient alone as if orphaned by their diagnosis struggling at their core to make sense of things. The psychological scramble.
My patient sits across from me, my last one for the day I think to myself, going home soon, the day is done. Then out of the blue as I describe the cancer, I hear the words “Mo you talk about cancer very spiritually.” Revelation. Taboo, should not talk to this person about this right now, no religion allowed. That’s the training. My indoctrination. But honest that was one of the best conversations I have ever had with someone with this disease.
Challenged. My patient stares at me but does not understand. Waves at me and smiles. That innocent oblivious smile. Someone else is making this decision for them. They are in pain and the people around perceive the situation but are unable to communicate it truly and fully. How can this paradox exist you might think? In a challenged intellect perhaps where explaining the physical does not help, words are of no use and an orphan appears.
Three unique situations. Each one with no real guidance on how to approach them. Am I the pioneer then? Don’t want to be. But clearly we have to start thinking of this disease as different and evolve more holistic approaches to help those who it encompasses. Perhaps we have to explore it in places we dared not go before. Like orphans exploring parenthood for the first time.
“You got me this far” he told me. And then making it more difficult “I trust you” he added. Perhaps these should be easy words to hear and I should be proud that I was able to do something and be commended. But it’s the other words that linger “I trust you” he repeated. As I build my relationship with patients I become part of their successes, goals and their life. I am someone that they know, have shared their hardships and deepest thoughts. I am told that it is best to have barriers and not to get involved with them. I am told that I should find ways to separate me from them.
To me this responsibility, this trust is crushing. It generally sends me reeling trying to make sense of the inevitability. Perhaps now I understand the spouse and her tears. How do I comfort? With my knowledge that has failed? With my compassion that I disguise?
But it does not end there; there is a question that I have loathed. “How long do I have?”
Is there a stamp with an expiry date? Perhaps I missed it in my examinations. That is what I say out loud, angrily perhaps? Do you say you did not climb Everest when you got only half way? When you stood at the bottom of the mountain and your first words were “I cannot do this?” Now that you are half way, what should I say about the journey so far? What about the goals we reached the times we shared? Just because I could not get you to the top what should I do? That is why my patients are amazing. It’s the first statement “you got me this far” that makes me heal.
It reverberates deeply in my mind. What strikes me down to my core beyond words that I feel do not understand.