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
Ride It Out for Amber, June 2014
Courage Ride, August 2014
Courage Ride, August 2014
Drive Out Sarcoma, September 2013
Drive Out Sarcoma, September 2013
Mo and Laura Koppenhoefer, book signing, October 2014
Mo and Laura Koppenhoefer, book signing, October 2014
Fist bump at the 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 7th Avenue in Rock Island. Mo will make a few remarks at 7pm.

Laura Koppenhoefer

 

 

 

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

 

The Love of This Momma in My Own Suit of Armor

9 months and 25 days ago my life was forever changed; it was the day I found out that one of my babies was diagnosed with cancer. The diagnosis was a very rare and aggressive cancer usually found in children or young adults called Ewing’s Sarcoma. For those of you who have had a child with cancer or any other serious illness, you know what I’m talking about: the tears, the pain and the frustrations that we go through.

SONY DSC

The love of a mother has for her child is like no other; it is a love that can’t be explained. A love that makes you wish you could take all of the sickness and pain away so that your child would be ok. But unfortunately life doesn’t work that way; you can love your child with everything you have, but you can’t take away their pain. You can only endure it with them, love them and never let them feel that they are alone.

In Dr. Mo’s clinic, Zach’s nurse, Wendee would tell me to put up my ‘armor’ when I was having a bad day. That thought really spoke to me because as moms we wear many suits of armor on a regular day, yet the armor changes when you have a child with cancer. Some days my armor held my heart in my body or some days my armor held me together because everything inside of me felt like it was coming undone. Some days my armor kept my knees from buckling beneath me and kept me from falling apart.

However, this past year I’ve also found that I have another suit of armor and that is my faith in God. Over the past nine months we have experienced more emotions then we thought were possible for one human being to endure.

This journey has made me see so many things so differently: remember to be kind to others, surround yourself with loving people, and please donate blood! I always knew life was so precious, but really didn’t appreciate the fact that the rug could be pulled out from under your feet in a blink of an eye. So, my armor has really become a way of dealing with all of the emotions of Zach’s illness and his recovery.

July 30 Deb Painter Pic 2

One night on our way home from a long stay at the hospital the song “Life Ain’t Always Beautiful” by Gary Allen came on the radio. So many things in life aren’t fair, but so many more things are so amazingly beautiful and we are truly blessed. Life ain’t always beautiful, but it’s a beautiful ride.

Team Painter is still standing together, still standing strong. Zach is a true warrior and my rock star along with his brothers. This is one proud Momma wearing her own suit of armor!

July 30 Deb Painter Pic 1

Update: Zach had scans in late July and the results came back free of cancer.

 

 

 

College Student to Caregiver

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. The last blog of the month comes from Moleigh Ryther, girlfriend to Nik Jiruska, Ewing’s Sarcoma survivor. Nik blogged earlier this month and now Moleigh shares her story as a caregiver to a loved one with cancer.

Caregiving is hard. Everyone knows it. Well…everyone should know it. But you don’t really know what it’s like until you are a caregiver. Many of you probably read Nik’s post on Dr. Mo’s blog about his journey with Ewing’s Sarcoma. I am Nik’s girlfriend, Moleigh Ryther, and I’m going to parallel his experience with my own as one of his caregivers.

April 2013, Nik started complaining about a pain in his left leg occasionally. I remember him referring to it as a “growing pain” one time when we were doing homework. I guess he was kind of right because something was definitely growing. But at the time, I thought it was nothing. Being the hard-working student that he is, he pushed through finals despite the aggravation. After completion of his semester, he tried going to a chiropractor thinking maybe he had a pinched nerve. Nik gets very stressed out during school so I thought it was maybe even stress-related.

Nik and Moleigh 1

Days later, Nik made his first trip to the ER: no conclusion. Second trip to the ER: no conclusion. Butterflies began to develop in my stomach. By his third trip to the ER, it seemed like hornets had taken place of the butterflies. We were supposed to watch a movie at his dad’s that night. Nik called me as I was doing my makeup and I could sense his pain through his voice. I immediately drove to St. Luke’s. I think it was about three o’clock in the afternoon. As Nik cringed with every slight movement of his leg, my stomach tightened and tightened. After many hours, Nik was taken back for an MRI. As I think back to the moment that the doctor returned with the results, the memory is a weird mixture of clear and foggy. I picture our faces and the room clearly but the moment the words “bone cancer” were uttered, everything becomes foggy and in slow motion. It felt like time stopped. I didn’t know what to do or say. I was in shock. I just remember Nik and I locking eyes and me lunging for him. Nothing the doctor said past that point was heard or remembered. By that time it was about one o’clock in the morning and we were sent immediately to the ER at UIHC.

It’s an awful, awful feeling to know that the one you love has “bone cancer” but an even worse feeling is wondering how bad it is. Fast-forwarding past final diagnosis of Ewing’s Sarcoma and into his biweekly hospital stays, we desperately searched for things to consume our minds within the confines of his hospital room. When it comes to hospital floors for chemo treatments, you have a pediatric floor and you have an adult floor. Nik was 20 – too old for pediatrics and about 30-40 years younger than the average patient on the adult floor.

Being a young adult with cancer puts you in a very underrepresented group with very different challenges. Most 20-year-olds may worry about school, their weekend plans or maybe a fight with their boyfriend/girlfriend. It’s a part of your college years, what most refer to as “the best years of your life.” You discover who you are. You’re allowed to be selfish and mistakes are expected. All the while, you’re attempting to gain independence from your parents. Being a young adult caregiver shares many of the same challenges. However, I in no way want to measure my experience alongside Nik’s. Although we lived it together, we experienced our own set of challenges.

Nik and Moleigh 3

Nik stayed in Iowa City with the hopes of taking classes during treatment and I was committed to helping him along the way. I created and updated Nik’s CarePage to keep friends and family involved. It was evident that Nik’s supporters reached far and wide, but that small studio apartment on Clinton Street felt so isolating. During his healing time after surgery in which he could not walk, I would rack my mind for things I could do or say to lift his spirits but ideas were not there. It’s not an easy task to balance the roles of caregiver and girlfriend in addition to the roles of nursing student, Cambus driver and sorority member. Being in his apartment in downtown Iowa City, we would lie there trying to sleep as we heard the ruckus of our peers outside. I found myself snapping at friends who would complain about frivolous pursuits in their lives. Let’s face it, many college students complain about homework, tests and commitments – I had no tolerance for that. It was unfair of me to expect my peers to understand what Nik and I were going through yet it felt impossible to restrain those feelings of bitterness.

Nik and Moleigh Collage

Despite all the negativity that comes along with a cancer diagnosis, I believe that you can find the good in anything. Here’s just a short list of the good that came out of our experience:

  • Nik and I got to spend the whole summer re-watching seasons of Dexter together.
  • The nurses and staff on 4JP and the outpatient clinic were so much fun.
  • Nik had an excuse to eat whatever he wanted and I liked to think that I did too.
  • My eyes were opened to what’s truly important in life and this continues to guide me in times of stress.
  • Dr. Mo created a relationship with Nik that is unlike any patient-doctor bond.
  • Being reminded of the good in the world through acts of kindness.
  • I feel very close to his parents and family after spending so much time with them.
  • Nik and I truly do know each other at our best and absolute worst. Nik can tell you first-hand what I look like after 5 days sleeping on a cot in the hospital with no toiletries. Spoiler: Not pretty.
  • Dr. Miller is easy on the eyes. Am I allowed to say that?
  • Nik’s Head Shaving party was a blast and we raised a bunch of money for The University of Iowa Dance Marathon.
  • Nik’s “You’re the Man” video raised so much awareness for Ewing’s Sarcoma and was so inspiring to put together.

It has been about eight months since Nik’s treatment ended but our journey continues as we head to Italy in a couple of weeks to celebrate all that we have to be thankful for. My boyfriend is the most amazing person in the world and he has an 11-inch scar to prove it.

-Moleigh Ryther

Nik and Moleigh 2