Death does not put an end to everything. It inspires feelings, questions, and gives perspective. People ask me how I feel when I lose patients. Do I feel sad, angry and defeated? I have walked with my patients down this path and returned alone. It does not end there. Death does not end things. Death is not the last thing.
From each patient I keep something with me. Patients help me gather knowledge that flows stronger than a river and wisdom that propels others who have to walk that path. The path remains uncertain but the journey of those we lost refines and paves the way. There is a certain enlightenment that comes from this that I hope to make you all perceive. What started small in the beginning, with the trust of a few, has become an organic tangible construction of the science needed to move us forward.
“A bend in the road, is not the end of the road, unless you refuse to take the turn”. Families always take the turn. What’s the alternative? To go on grieving what could have been? Do we live in our memories? When you meet the loved ones of a lost patient, trudging their way through the rest of life, do you wonder what drives them? I am always touched and humbled by what they say amidst their sadness and fear, their feelings of loss and grief. They say prayers for other cancer patients, and a shout out to me, “You go get this, Mo”, “You figure this out”, and “You find out why?” These words push me on, make me get up, make me see what still needs to be done.
Memories ebb and flow rubbing into our wounds and heightening our suffering. At times they gather together, like a swarm of locusts they invade, leaving nothing behind: a loss of meaning and loss of purpose, a desolate place. Out of it emerges a new beginning, a new start, that puts the bounce back into our feet and we are alive again. Understand, that is how we make our memories live within us without their crippling effect, and those we have lost can show the way for all of us to succeed.
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.