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.

Waiting

 

Today’s post comes from guest Blogger, Fletcher Summa. Thanks, Fletcher, for sharing your story with us! 

 

 

I sat in the waiting room on February 8, 2013 in the Cancer Center preparing to tell Dr. Mo that I didn’t want to do this anymore. My treatment was entering the 11th month and my body was bloated and scarred and bore little resemblance to my pre-diagnosis self. I looked around the waiting room and I focused on what I wanted to say to Dr. Mo and settled in to wait for my name to be called. Waiting is something you become very good at as a cancer patient; my mom sat next to me lost in her usual game of Candy Crush Saga on her phone. This situation had been part of my life for almost a year: the two hour trip to Iowa City every other week, wait for a bed, get hooked up to chemo, stay for days, go home, feel awful, get better, then repeat. However, this time I could no longer go in and just face it the way I’ve done in the past.

The chemicals were really starting to take a toll on my body, especially my heart. The methotrexate I was scheduled to take had been cancelled due to my lab results. This meant that I would have only two rounds of treatment remaining—“only” two but it was dependent on the results of my heart scan. Regardless of the result, I planned to tell Dr. Mo that I was done with all treatment.

It all began when I was diagnosed with Osteosarcoma on March 21, 2012 and within weeks I began treatment, then on June 21, 2012, I underwent surgery. The surgeon removed the tumor and if the tumor was over 90% dead then I would have a shorter treatment plan; if it was below 90% then the treatment would be more intense. Yet because my heart scan results had not improved I was informed that I couldn’t receive further treatment without risking permanent damage. Though it doesn’t quite sound like it would be, this was indeed good news. This was the day that I waited almost a year for. “No more chemo.” And it was finally over.

I smiled when I heard this news and feelings of joy overwhelmed me. I could get on with my life and not deal with any more side effects. Aside from the doctor appointments every three months, I thought I never had to think about cancer again.

I was wrong.

What I didn’t take into account was just how much this experience had consumed my life. Living and surviving became indistinguishable. Together with the nausea, the doctor visits, the questions from friends and family, the pills and treatments, and the pain, being a cancer patient became who I was. My return to the real world after the chemo was extremely difficult. I simultaneously wanted to talk about it and to NOT talk about it.

 

Yet life goes on and my life had to continue to move forward. My hair was growing back, I was losing weight and I had more energy than I’d had in a long time. The mindset I had throughout chemo was that each round was a victory and that every small nauseating triumph would accumulate to success overall. And what is cancer but a concentration of painful battles? If I had won against that, then surely I deserved to live without any more inconvenience.

Again, I was wrong.

Without this understanding I might have gone through life thinking that the world owed me something and that every hardship had to be reimbursed. What if I spent the rest of my life asking “why me?” or cursing the wind every time my leg hurt, then there would be no time to appreciate the fact that I made it through the treatment. Sometimes, often times, life is unfair. But that is only part of the picture and a small one at that. Maybe this is the real lesson I learned.

It’s been 29 months since my chemo ended and I’m still not sure I’ve really ever left that waiting room. What remains though after spending so much time waiting and reflecting on my life, is an enormous appreciation for those who supported me throughout this journey. The fact that so many people supported me, including my wonderful family who sat alongside me in the hospital all those days bored out of their minds and not knowing what the future holds. To the doctors and nurses who were able to balance their work responsibilities while being kind and compassionate, proves to me that people are capable of extraordinary acts of kindness and strength. It is because of them that I made it through an otherwise horrific experience, and it is because of them that I appreciate life so much more now.

Inhabited

“It’s just so hard, Mo!” she exclaimed amidst tears, taking in labored breaths with her oxygen on. I had delivered the news that the tumors again were stable, which just meant they were not growing. “Stable”, I wonder where we come up with such terms and expect our patients to grasp the meaning. Stable, I guess, means: it’s quiet, not dramatic or anything, not out of control.. but then it is all relative. The cancer has not left her body. In each nodule billions of cells divide and multiply, and the CT scan is unable to tell the whole truth of what really was going on.

The conversation took a turn to where she was now sobbing. So lets do this like the movies, where a screen shot would say something like ….

10 minutes earlier

I had walked in and greeted my patient with a hug, she was a big advocate of my program and always supported cancer research. I had gone off on a tangent telling her about a new way of attacking cancer based on a test we were now doing in the cancer clinic identifying potential genetic targets. Here I go again sounding all sophisticated, but cancer growth often is dependent on what we call “pathways” that cause the cancer cells to survive in the environment they grow in. If identified, these signals can also be interrupted and the cancer treated, controlled or stabilized. I had found a potential agent that could be added to her current regimen and I was talking to her about this, when she suddenly started to sob.

“Stable” the word just hung there in the air. Not better, not gone. I felt the hard truth was that she was inhabited by this cancer. It was not going away like we would hope when we deliver therapy. She carries it along with her every day, in her body, memory, and heart. She must live amongst her family and forget that it exists. The oxygen prongs in her nose a constant reminder of the damage it had done to her lungs and her breathing. How does she do it? Is that what is hard?

Her next words, the gist of which was…..”I know the day will come when what you will say is not what I want to hear, that day when my tumor gets the better of me.” She followed by ” You need to blog. Your blogs help, they help me”. She is not the first to reach out to me to write.

What is touching is that she came with a gift to the scientific enterprise that comes up with answers and defines new attack schemas against this un-welcomed inhabitant. This gift, I explained to her, opens the doors to researchers that find ways to understand the alien lurking inside her for future cancer patients.

I held the envelope in my hand and I thanked her for her supporting cancer research: “every breath, every word and every gift goes a long way” I said. She told me that what I said helped. She wanted to share her message with her friends, explaining to them the power of what we can do as a collective group, to fight the rarity of what she has as we define the finest details of this complex disease.

Cancer has a different face now. It is constantly changing; evolving and so is our understanding of it. While this cancer is an intrinsic inhabitant of some of the people I have come to love and respect, never does my mind rest in searching for solutions to the issues that it keeps presenting. It cannot bend the spirit of the patient fighting, the family supporting and of the researchers who strive to impact the lives they so stringently try to save. “Stable”, while good, is far from where we want to be.

I am with you today my friend

Mo

 

Agape

Love.

Selfless, sacrificial, deep and full. It has been a week filled with events that have made me see the human side of selfless; where others have gone out of their way to help. My week started on Monday when I found myself in a church in Rock Island. In honor of one of my patients, who took an initiative that amazed me, writing, editing, and publishing a book in less than a month about her fight with sarcoma. She did not stop there; she dedicated the book to sarcoma research and all the proceeds. I was honored to be amongst the people who supported her, and I was met with an enthusiasm that surpassed logic. When I stood at the podium to give a few words, I completely missed why I was there. She had poured her heart out to the world in words that she materialized into a book that she selflessly donated to sarcoma research. But that is not all that struck me.

She had been diagnosed with a rare tumor that does not grab media attention. Do you know what I mean about cancers that get attention, those that get chased by the paparazzi?  One person today in the clinic boldly said to me “Pink, it’s all about pink, what about the other cancers Mo?” I thought of yellow for sarcoma. She asked “who are their advocates?”  Well, that is a hard one. Over the years while I have been building my sarcoma program, I have watched as individuals stood up, each person a unique representation of a very diverse disease that is exceedingly rare. Today I share a story that is a stone on the journey that helped me reach a book signing that open my eyes to the community that really wants to help.

I share the story of a young woman who was faced with a fast growing sarcoma that made time and her sarcoma stand still. She had one motto in life that resonated with many; it was “live it”. She talked a patient into an amputation and he realized his dream by going to the Galapagos Islands where he shot darts with the pygmy people and played with seals on a beach. She told people to dream and never give up, to never quit asking and to find the best treatment that could give them a life. She told them that living was in the heart, and despite being afflicted with a rare cancer, she found her calling to help others. Truly selfless in her fight, she made me see beyond what one person could do to effect change in a community around her. I met her husband today and with his simple words, and amazing gesture, he said thank you.

Who are the advocates of the rare tumors? In my eyes, they are the special individuals who traverse reason, fight beyond any doubts spreading awareness and bringing camaraderie to a lonely fight because they were the pioneers that got there first and learned something. They battled ignorance, loneliness, hopelessness and mustered the courage to say: we shall prevail! I bow to them all tonight as I reflect on the courage and bravery of their hearts, in finding a voice that is loud enough to penetrate the people around them.

A bike ride, a motorcycle ride, a golfing event and a book………….

Thank you my friends. You have achieved the ultimate love.

Agape.

Mo

 

Ride It Out for Amber, June 2014

Courage Ride, August 2014

Drive Out Sarcoma, September 2013

Mo and Laura Koppenhoefer, book signing, October 2014

Fist bump at the book signing, October 2014

For information on Laura Koppenhoefer’s book, Notes on the Journey: Living with Sarcoma and Hope, visit the Living in Hope Foundation.

“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 7^th Avenue in Rock Island. Mo will make a few remarks at 7pm.

Laura Koppenhoefer