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

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.

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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.

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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.

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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.

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Patient Care, Perspectives, Sarcoma

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

 

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Melanoma, Sarcoma

The Messenger

What happens when someone reveals a difficult part of themselves when they are faced with adversity? New parts of us are expressed as we break down, or we show our teeth, when we fight or bite, or retreat in situations we wished we had never been forced to endure. I have seen all sorts of reactions that range from anger to despair. I have seen people floundering, and others drowning, trying hard to breathe as they search for a ray, a straw to hold on to. The situation is constant, unrelenting and never-ending. At times, their fear grips them, and instead of running away, they go inside to a place that is hard to see. They retreat within themselves, and they do not see or hear me. When I sit in silence next to my patient there is a myriad of things I see, and more I cannot discern. I am not sitting idly watching this, I sit present; connecting, empathizing, supporting, and waiting for something. Maybe that small flicker of courage. Today I will blog about the small things that I witness as a patient slowly finds the strength. I sometimes wish I could tell my patient, I am merely the messenger.

My patient was hunched over as if his backbone was weighed down by the burden of the news in his head. I sat close on a stool sharing the news and embracing the reactions that I have become accustomed to, when delivering cancer-related events. I needed to be present, open-minded, compassionate, and resilient as sometimes I become the target of my patients’ anger. It is never intentional on their part. I have asked myself “Have I ever been this scared? Has myself been endangered, and the ones so dear to me devastated for me, or for themselves?” I go to those times. Many things are said in such situations, that later when I recall them I wonder how one overcomes that reactivity, the impulsivity, and the urge to retaliate. I dismiss all my hurt feelings in these situations, yet I am fully aware of them as I struggle inside too. I search deeply for familiar feelings to balance the raw emotions that transpire.  I play with my own fears in my head remaining calm throughout.

My hand touches his shoulder. My voice resonating from a deep place, where my emotions are oscillating, from my own envisioned fears, from my delusions of loss and grief, from a dreadful moment I have yet to live. I talk slowly, at first, telling a small story that is very personal to me. I share that some of my own sufferings a point to reconnect perhaps. I search for my friend who is locked inside the tunnel with no light. It really does feel like I am blind sometimes aimlessly trying to find where they went. I search for small things, and as I find them, like a catalyst, allowing for the exchange of some words, sometimes questions are pummeled at me which I navigate not always with ease, but truthfully. The visit does not always end with my patient leaving with a smile.

Being present is made up of small things, that should not be dismissed as they are that ray of light that bring hope back to a patients heart; even when it does not happen in front of me, I know I have to start it. It is a privilege to be a part of a transformation, but it is exceptionally intimate to be at the start of one.

 

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Perspectives, Sarcoma

The Will to Live- by Guest Blogger Suzanne Ruggieri

Today’s blog comes from the wife of an osteosarcoma fighter. Together, they fought the disease as a team and beat the odds they were given, at least for a couple of years. Their story together may have ended early but it lives on through the eyes and spirit of their daugther.

I remember the first day my Ethan told me that he once had been treated for Osteosarcoma. I never expected him to say something like that, but I also thought it wasn’t a big deal. I had never been in the “front row” to witness the impact of cancer on a person fighting it; I was ignorant and oblivious to it. As Ethan and I continued our life together and soon we were engaged to be married. I knew that most likely Ethan’s cancer would rear its ugly head again at one point, but in the excitement of building our future together I assumed it would happen much later down the road. Unfortunately, it didn’t.

Ethan and Suzanne 1

The osteosarcoma came back with a vengeance early October of 2006, just two short months before Ethan’s 5-year remission date; only we didn’t know it yet. Our wedding was planned for November 18, 2006.

After much convincing on my part, we scheduled an appointment with the doctor and a biopsy was taken. The test results pointed to sarcoma again. It was so difficult to cover the panic that I felt when everything we planned had to be thrown in the wind. There was only one guarantee: Ethan would fight as hard as he could to beat the disease yet again.

We had so many appointments going from oncologist to oncologist with each one telling us the same thing: that the cancer has progressed too far and there was nothing that could be done for him and we should just go home. That did not sit too well with Ethan or me. We wanted our wedding, our honeymoon, and the happiness of newlywed bliss.

We knew that Ethan’s body was consumed by sarcoma; as it was in his lungs, heart, skin, pancreas, skull, kidneys, and liver. Despite that, Ethan felt he could fight it as he had beat it once before, and this time we would fight it as a team together. But we had a problem: we couldn’t find a single doctor that was willing to fight with us.

Ethan

We were scared and discouraged but we refused to give up so we headed to yet another consultation with a doctor that came highly referred. We didn’t expect any different from the previous doctors yet we knew if we didn’t try then we couldn’t beat it. Right away as we met Dr. Vyas we knew this would be different from all of the other doctors’ visits. He could clearly see we were worse for wear, yet he didn’t tell us that we should go home, rather he talked to us like normal people. He did make it clear that we were in bad shape and he could make no guarantees, but he also told us he would do everything he could to help us. That was a first for us.

We left the clinic that day with a ray of hope and we got married two weeks later, went on our honeymoon to the Virgin Islands and tried to enjoy the bit of time we had before it would all end.  We had a wonderful time despite the fact that we carried over 25 medications with us all prioritized to combat the painful effects of the cancer.

Ethan and Suzanne

Upon our return, Ethan was admitted for chemo treatment right away and he stayed 39 days. It was about 5 weeks into our stay when we learned that we were expecting our daughter, Emily. Despite feeling horrible, Ethan smiled so brightly and was so proud that he was going to be a Dad. From that time on, Ethan’s biggest concern each day was to make sure I was comfortable enough. My well-being and our daughter’s were more important than Ethan’s own comfort-the thought of his daughter gave him even more reason to fight.

Over time, the lesions polluting Ethan’s body shrunk and some even disappeared. Then as summer came as we prepared for our daughter’s birth we were still planning for the future as a family. Our daughter made her debut into the world on August 27, 2007 and Ethan was by my side. Two weeks later Ethan had his first lung surgery to remove the nodules. Up until that point I stayed with Ethan 24/7 and tried to be his voice and his biggest advocate.

Ethan with Baby

The first two days after the surgery I had no choice but to stay with Emily. It was heartbreaking to see that Ethan needed me desperately and one of the hardest decisions I had to make was to entrust Emily with family and to again stay with Ethan. At that time I felt that he needed me more than she did and I trusted our family and knew she would be well taken care of. In my heart I knew that Ethan and I were a team and we had to fight this as a team.

Life went on as did the chemo treatments and surgeries until the fall of 2008. That fall brought many horrors for us. Though Ethan’s lesions disappeared in some places he now had the addition of brain lesions. These lesions caused seizures and resulted in an emergency surgery. What we thought was a stumbling block was the beginning of the end and from this point on we were limited in the chemo treatments because Ethan’s body could not heal and become strong. As a result each time he had a surgery the cancer was flourishing elsewhere making it impossible to keep up. Finally on December 19, 2008 after an ambulance ride to the hospital we were told that there wasn’t anything else that could be done. The cancer was wrapping around Ethan’s spinal cord and was slowly paralyzing him.

We went home sad and empty and I made hospice arrangements and I was forced to accept the fact that I could not make him better. Regardless of how quickly I could change his drug pumps or clean his lines, I could not stop everything from happening. Ethan came to terms with his end on the last day in the hospital. Alone with his aunt, he said that he was blessed and fortunate to have had such a wonderful life and that there were people that did not get to experience half of what he experienced in his 24 years. He said that having Emily and me were all he could ever want. He was happy and he could leave our world happy knowing that.

We lost the battle in the early hours of February 8, 2009. I had given medication and must have fallen asleep and less than an hour later, I awoke and did not hear the oxygen machine. I knew he was gone. I never said goodbye and part of me knew that he left our world when I finally got a moment to sleep when I wouldn’t worry about him and for a few moments I was at peace.

Ethan 1

Looking back I know we were truly blessed from the beginning. I was blessed to have met such a wonderful old soul in the body of a 20 something year old man. I still cherish many of our sweet moments we had in the hospital; sure there were tears and worry in our room….pain and fear in waiting rooms…..but there was also undying love and support and a lot of humor that filled our hearts. We had the drive and determination to fight as hard and as long as we could and we made it 2 1/2 years together. In the beginning all doctors, except for Dr. Vyas, reminded us daily that Ethan had less than a month to live and well we proved them all wrong. We proved that determination and will to live is half the battle. We proved, with the help of Dr. Vyas, that we as people do not determine the lifespan of anyone.

I may not have Ethan by my side but I have Emily, our daughter, and a wonderful family that carries on the memory of Ethan daily. Emily is Ethan in every way: her eyes are his shade of beautiful, her facial expressions and silliness remind me that Ethan will always live on through her. I have remarried and Emily has a little brother, Gabriel Ethan. He too, knows the great importance of his middle name. Ethan’s legacy will always live on thru us and his drive is embedded in Emily.

Ethan’s big heart is part of Emily as well. Each year, she leads her Girl Scout troop in collecting donated boxes of Girl Scout cookies to take to the patients at Children’s Hospital of Pittsburgh, where her Daddy Ethan was taken care of. We support her as a family and want to help those who may just be in the same place that we once were. We do it to invoke a smile on a young child’s face or even a parent, because as Emily knows her Daddy Ethan LOVED cookies.

Ethan is as much a part of our family now as he was when he was with us physically. Wherever we may be, whatever we may do, he is always with us.

– Suzanne Ruggieri

Ethan with Emily

Emily is currently in her 2nd Annual cookie drive and for more information please email gscookies4chp@gmail.com.

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Perspectives, Sarcoma

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.

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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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Perspectives, Sarcoma

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.

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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.

 

 

 

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Perspectives, Sarcoma

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

 

 

 

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Patient Care, Perspectives, Sarcoma

Random

Death is a door. It is a moment in time that is well-defined.  Once it happens it is irreversible. Just like the diagnosis of cancer. It cannot be undone. I have said the word “Sarcoma” to so many patients. Yet this is a rare disease. It stems from the Greek word that means “fleshy growth”. Yes it is old, and it was present in history before. It scares me to know so little about it. I am just perceiving its vastness. Sometimes when I share with my patient it feels like I am speaking a different language. Muffled I sound to the patient, loud to the student. When I teach it I find myself saying to my students “Sarcoma makes me look smart because there is little known about it, and not a lot of people grasp it. Although I do not feel I know much, it just seems enough.” It is hard to comprehend.

I just hung up the phone with one of my fellows, he was talking to me about a patient who was not doing well. I could sense the eagerness in his voice to find another treatment, but the realism that there is none comes from my experience. A resistant disease to treatments that depend on a very old medicine; surgery – Cut it out, until you cannot , then keep trying to slow it down, with an inevitability that you cannot escape. A truth I have been facing many days in only trying to communicate it better with those who suffer its consequences. We can never relive the past, we barely stay in the present and the future never comes.  But there is a point when all this stops. I oscillate between the concept of death and the diagnosis of sarcoma.

Sarcoma! What is it? I don’t know? We have defined it as more than 150 subtypes. It stems from a very primitive cell called mesoderm. The most common cell in the body but it only makes up 1% of all human cancers. Rare is the diagnosis. Having a sarcoma gives uniqueness to a moment that really makes the person in front of me rare. Having a diagnosis of sarcoma gives definition to a cancer journey, to a patient’s identity, and to my relationship with them. I touch upon the relationships in my mind briefly, like staring at scars that are hard to forget. The knowledge of sarcomas is derived over many years of experience; it is slow to digest, hard to understand. Just like the knowledge of death.

Why am I writing in this way to you this week? Just random thoughts as I sit here on the couch thinking. Perhaps like the random selection of a sarcoma that appears in a human being. Random but exceptionally rare. How can that be random? I share with you my inner pendulum as I swing back and forth between a disease that is so little known and an event so little studied.

It takes a lot of effort and collaboration to get together and understand this very difficult disease. I believe Sarcoma doctors are the only ones who collaborate for the right reasons. They genuinely need the guidance of each other and act as a team to help understand this very diverse, very unique disease. I think of my patient who is struggling maybe near his end, after resisting so many therapies, what else can I do? I think about how inevitably I will fail, trying to find the key to helping patients. We have had small victories in our understanding but it still remains a mystery. I am in constant battle against the unknown and I am about to be wounded again, scarred, as my patient represents my unforgettable memories of him. Wish I could just take a shower and let it all wash away.

Random are my thoughts today. Resistant is the disease I treat. In an endless battle I stand, ready to fight again.

Mo

 

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Perspectives, Sarcoma

Don’t give up the fight!

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. Today’s blog comes from Suzanne Burkhart, wife to a sarcoma angel, Jim Burkhart.

 

When my husband Jim told me he had Sarcoma, I looked at him and said “Are you sure the doctor didn’t say ‘Carcinoma’”? “No, the doctor said Spindle Cell Sarcoma”. Sarcoma, what was that word?

Our journey began before the “Sarcoma” word. In January of 2011, my husband Jim was watching one of many bowl games when he felt a lump on the back of his leg. He pushed on it and immediately pain shot down to his foot. He kept that information to himself. A few weeks later, I walked into our bedroom to see Jim stretching out his leg. I asked what he was doing and he replied “I think I tore a muscle, so just stretching my leg”. I suggested physical therapy.

The physical therapist said he would not touch Jim until he had an MRI. That MRI led him to surgery for a biopsy. Right before Easter of 2011 Jim was told the dreaded news – Spindle Cell Sarcoma and an appointment was scheduled for the Monday after Easter at the University of Iowa.

We met with Dr. Joseph Buckwalter and he explained more about sarcoma, but your mind is a whirl and you don’t fully comprehend. Jim was scheduled for surgery that Friday in hopes to clean up the tumor, to get a full understanding of what we were dealing with. Friday’s surgery came and after surgery, Dr. Buckwalter told me that in order to save Jim’s life, he would have to amputate the left leg. I cried….whatever else was said I don’t remember other than those words “we are going to have to amputate”.

We went home to tell our children. Sam was 9, Henry 8, Eleanor 5 and Charlotte had just turned two. How do you find the words to tell your kids that their world was going to change, that their dad was going to look different. Our family cried, the boys begged for it to not happen, that they would be better behaved, we prayed. We went back to Dr. Buckwalter to discuss the amputation.

Suzanne Burkhart pic 3

Due to scheduling conflicts (ours because we wanted to wait until after our son’s First Communion) we met with Dr. Ben Miller. We really felt at ease with Dr. Miller. Dr. Buckwalter was a very good doctor, but at the time, I was very angry with Dr. Buckwalter for the news he had delivered. Surgery was scheduled for May 20- Jim and my 11th wedding anniversary. For me, what better day, since I promised Jim, in sickness and in health.

I think around this time we were introduced to Dr. Milhem. We were told to call him Mo. He didn’t sugar coat, he didn’t make promises but he got down to business, his business, of understanding and treating Sarcoma. The first form of business was to find out that we were dealing with Synovial Sarcoma. Visit after visit, we either came out of Mo’s office with a sense of relief in knowing that the cancer was behaving itself or with a new plan of chemo or clinical trial. Never once did Mo ever fill us with false hope if he didn’t have an answer as to why the Sarcoma was behaving a certain way. He would give us the “I need to talk this over with my colleagues to see if other doctors had any type if sarcomas acting this way. Email me tomorrow and I will have an answer.”

Suzanne Burkhart pic 1

This is how it is with Mo. Our lives were up and down and he was the steady in our tumultuous waters. We went for a second opinion in New York and came back to Mo with our findings. We went to NIH (National Institutes of Health) with Mo’s blessing for Jim to be in yet another clinical trial. We always pushed Mo and he pushed further and harder for Jim.

In March of this year, Jim had a gall bladder attack. With everything he had going on, a gall bladder attack seemed minor. We had our local doctors make contact with Iowa on how to treat. A week off of treatment and Jim had his gall bladder removed. Another week off of treatment and Jim was chomping at the bit to get back on treatment. Mo agreed. At our next appointment, we were told that the tumors in Jim’s lungs were still growing but, in true Mo style, he had one more thing to try, but this was it. If this treatment didn’t work, than he has exhausted all his resources.

Early in the morning of May 16th, Jim called out for me. I ran to him and he was struggling to breathe. We had an appointment later that morning in Iowa but I said to him, “Babe, I think we need to go to the hospital”. He agreed. The ER doctor told me the news that I knew, dreaded to hear, but knew I had to know. “He is dying” the doctor told me. I emailed Mo, I needed him to know. Oh, how I wish he could have been there, but we were too far away. I went in and told Jim “Babe, I think we are getting to end of our journey here”. We cried. I went to get our kids…family and friends gathered. By 10:15 that morning, my Jim was gone but I knew he was at peace.

The next morning I again emailed Mo. I thanked him for giving Jim three more years he may not have had. I told Mo to keep doing what he was doing…fighting for his patients in their battles against Sarcoma. And on our end, we will continue to keep doing what we have done for two years…raising much needed funds for Sarcoma Research through Drive Out Sarcoma.

Suzanne Burkhart pic 2

I leave you all with this. Jim never complained, not about treatment, not about why he had cancer. He accepted his fate and trusted in Mo to help him. He also had a strong faith in God to help him through diagnosis, treatment and death. While the kids and I will miss Jim every day of our lives, we know he is at peace.

-Suzanne Burkhart

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Perspectives, Sarcoma

Nik Jiruska: Ewing’s Sarcoma Survivor.

July is sarcoma awareness month so I’ve invited others affected by sarcoma to guest blog throughout the month. Today’s blog comes from Nik Jiruska, a young man who battled Ewing’s sarcoma. Enjoy.

My name is Nikolas Jiruska and I recently finished receiving chemotherapy treatments to fight a rare form of bone cancer called Ewing’s Sarcoma. This disease primarily affects children and adolescents, but I was diagnosed at the age of 20. It was a long journey, and I am fortunate enough to be able to say that I am now back at The University of Iowa nine months later and enjoying life more than ever. Now, let’s go back to April 2013 where my journey began.

Nik Jiruska 2

I started feeling pain in my left hip towards the end of April. It was a fairly mild pain and it would come and go every so often. I thought it might have been a pulled muscle or a pinched nerve. This persisted for a few weeks before the pain started to get worse. Fortunately, the intense pain waited until I was done with my final exams for the spring 2013 semester. I went to the emergency room at St. Luke’s Hospital in Cedar Rapids the first time the pain in my leg became unbearable. It started in my hip and would send deep, pulsing pain down my entire leg. They drew blood and took X-rays of my back and hip, but were not able to draw any conclusions from this work. I received some pain medicine and was told to keep monitoring my leg.

The pain continued to grow worse and worse from then and I went to the emergency room two more times before I finally received an MRI. The ER doctor who was tending to me knew immediately that I had cancer after looking at the results of the MRI. This was the last thing I ever expected to hear, especially at age 20. The doctor arranged for me to go to The University of Iowa Hospital and Clinics immediately. My parents, girlfriend, and I left St. Luke’s and went straight to Iowa City in the middle of the night.

After a few days of various tests, I was officially diagnosed with Ewing’s Sarcoma on June 4th, which also happens to be my mother’s birthday (happy birthday, right?). Although we had the official diagnosis, there was still a lot to do to find out if the cancer had spread anywhere else. After the initial blow from this horrifying diagnosis, we only received good news from then on. All of the tests revealed that the cancer was localized in my hip and had not spread to the brain, lungs, or bone marrow, which are three locations that this could likely spread to.

At this point, I started my chemotherapy treatments and talked with my oncologist, Dr. Mohammed Milhem (just “Mo” for every one who knows him), to get an idea of what the next few months would entail. I would receive chemotherapy treatments every two weeks, alternating between two and five-day treatments. I would have five rounds of chemotherapy and then have more scans to see how it reacted to the treatment. Shortly after, Dr. Benjamin Miller would perform surgery to remove the tumor. We thought I would have to receive a hip replacement, but there was a chance I could also have a bone allograft surgery depending on how the tumor reacted to the treatment. After the surgery, I would go on to receive nine more rounds of chemotherapy for 18 weeks.

It took me a few rounds of chemotherapy before I started to feel the effects. One of the effects that was the most difficult for me to grapple with was losing my hair. It was sort of my trademark and was a big adjustment in my life. However, a small price to pay, considering it would grow back eventually. Some of the other side effects I felt throughout my treatments were lightheadedness, fatigue, and nausea.

Nik Jiruska 1

The first five treatments flew by much faster than I had anticipated, and all of the sudden it was August. I had my scans and my cancer had reacted very well to the chemotherapy treatments, shrinking the tumor a lot. Dr. Miller determined that I would be able to have the bone allograft surgery. There is a longer recovery time with this route, but long-term, it would be better for my leg in terms of returning to normal functionality. Dr. Miller and his team performed a successful surgery to remove my tumor on August 21st. He determined that 95% of the tumor was dead and had been removed with clean margins. This was a big step out of the way, and everything was downhill after that.

Perhaps it is only at this point in time that I can say that it was downhill after surgery. At the time, life was very difficult. I was not able to put weight on my left leg for three months because my bone had to heal around the graft, and when you are dealing with healing bone, everyone knows this is a very slow process. This lack of mobility along with starting my final nine rounds of chemotherapy made my choice to withdraw from school for the fall 2013 semester pretty easy.

I do not know how I would have made it through those three months without my parents and girlfriend. They went out of their way to do things for me much more than they needed to. I am so grateful for them and what they did for me during this time, and during my whole fight. I primarily spent this time going back and forth between my apartment in Iowa City and my parents’ houses in Cedar Rapids, when I was not at UIHC for treatments. This was an uneventful time, to say the least. My days were filled with watching movies, Netflix, and playing videogames. It was the lazy time you fantasize about when you are living a normal, busy life, but believe me when I say this lifestyle gets old very fast.

After beating five video games and watching countless movies and TV shows, my three-month appointment with Dr. Miller arrived on November 14th and he gave me the OK to start bearing weight on my left leg. Goodbye, walker and crutches. I started practicing to walk immediately when I got back to my apartment after that appointment. It was an awkward and exciting feeling. I had, and still have, an overwhelming feeling of thankfulness that I have the opportunity to walk, because not everyone is fortunate enough to be able to keep their limb when they are diagnosed with Ewing’s Sarcoma.

At this point, life was getting pretty good. I was walking again and only had four more chemotherapy treatments to go. However, my last few treatments were delayed because I was really feeling the negative effects of the chemotherapy and I was not meeting the required blood counts to be able to start the next round of treatment. I had to receive a handful of blood transfusions during this time to help meet the blood count requirements. Thinking about it now, these setbacks were not a big deal at all compared to what can happen when receiving chemotherapy treatments. At the time, though, it seemed awful because I was so anxious to finish and get on with my life.

Finally, January 3rd came around and it was time to go in for my final chemotherapy treatment. Unfortunately, this had to be a five-day treatment. The longest five days of my entire life, I think. My girlfriend stayed with me every night in the hospital, as she did during my treatments in the summer months, which made everything a lot more bearable because she is a very comforting person to be around. The wonderful nurses of 4JPE in UIHC presented me a beautiful cookie cake to congratulate me on my final day. I then returned to Cedar Rapids for a couple of weeks of rest, relaxation, and relief before I would return to school. I returned to UIHC three weeks after I completed chemotherapy for a bone scan and CT scan to make sure I was clean. Sure enough, the scans were clear. We were all optimistic that this would be the case, and it was truly a wonderful feeling. Time to get back to life.

I am sitting here writing this now and I do not feel bitter about having to have endured this experience at all. I have only to be thankful that I survived it. Also, as odd as it may sound, I am sort of thankful that I went through this experience because I learned a lot about myself during this time and it strengthened my relationships with those closest to me. I want to conclude my story by saying that you should never overlook any pain or odd feeling you may experience in your body. I did not do this and the early detection of my cancer may have saved my life. I also want to give thanks to my wonderful caregivers throughout this journey, including Mo, Dr. Miller, my parents, my girlfriend, and the nurses of 4JPE, 4JPW, and 2RCW.

-Nik Jiurska

Nik’s girlfriend made a surprise video for him at the completion of his chemotherapy. She got many of Nik’s friends and family involved in this video, including a celebrity or two. Watch the story from KGAN News Channel 2 and then watch the video from his girlfriend here.

 

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Patient Care, Perspectives, Sarcoma

Invitation

“Just tell him he has more than 4 weeks to live”, her eyes welled up with tears. I reached for the tissues that are so conveniently placed in every room in the cancer center. He had sarcoma in his lungs, and the surgeon could not remove them after taking him to the operating room. He had recovered remarkably from the surgery and had come in to the office to talk, perhaps seeking re-assurance. He said “I keep thinking about my grandson, and I want what’s between my ears to stop thinking so hard about it”. I handed him the tissue now because he had started to cry. A common occurrence in my clinic, that emotions are powerfully shared. We all know we are eventually going to die; the acuity of the realization always hurts. I reassured him and his wife. He likely would not die in 4 weeks, and I had treatments up my sleeve. He was receiving an invitation from death, that he was next. How do you as a human being understand that you have to die at some point and reach acceptance? If death had a language how would it knock at our doors?

He left feeling better that he had come, I was glad to relay to him that death, albeit near, was not as imminent as he thought it was.

Events in my clinic remind me of a lot of death. It hovers around me like a teacher, not an enemy, and it speaks a language we are young to understand as humans. I want to share it more openly because many are frightened to talk about it. I might be very comfortable with the notion of dying, but in me there is a unique struggle that I share with everyone who gets a call from cancer to die. For starters they meet me and they begin a journey each one different. It’s like looking into a kaleidoscope the richness of colors, shapes, beauty and vitality that the human spirit brings with it. There is also the fear, the aloneness and the uncertainty of the how? When? And why? Questions I have yet to answer accurately. I had a conversation with a colleague as I waited for the bus to go home. She talked to me about a patient that just wanted me to call him. He had transitioned to hospice. She told me he was so appreciative with the decisions we made that had given him 4 years of survival. Of course I will call him I told her. Many thoughts as I bobbed up and down on the bus, it has a way of percolating thoughts, having someone else steer you to where you need to go so you get to focus on other things. I have often told my patients, sit back, I am the bus driver. It might be rocky but I will drive with what I know.

How do we end this conversation? Well consider it a beginning of a deep understanding of a process of life we choose not to acknowledge until we receive the invitation to understand it. We focus on health, love, family and life. We do not talk about an inevitable process called death. It might be very lonely sending us invites welcoming us to the next process. It is sobering to discover that which many fear in their hearts teaches a deeper wisdom that is appreciated. I too travel to my own, and I wait for an invitation to join those who have already passed.

 

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Patient Care, Perspectives, Sarcoma

Ambiguity

“You have to go home, you have a blog to write” my breathless patient uttered the words as he awkwardly ended our conversation last night. I was tired, but not nearly as much as he was. Yet he was there, caring about what I still had to do tonight. It had been a long day for him, a long week to be honest and now has been admitted. Patients get admitted for different reasons. Some to get chemotherapy, others with symptoms that are hard to manage at home.

It takes me one look at them to know that they need to be admitted to the hospital and that this is another battle they must face. Putting them in the hospital allows many aspects of their care to take place. They are right at the heart of the “factory”, with all the nurses, the physicians, the pharmacists, the medication, the machines and technology. He looked back at me and he knew that I would admit him. It was clear he was struggling and it was time to offer relief to him and his wife who cried but agreed this would be the best thing to do.

What will happen? Is it the cancer? They and I hoped for many other things and many outcomes, something I could possibly remedy. It’s not easy to see my patients struggling with their symptoms. They are trying hard to “fight”. They get stoic and a little stubborn. I promised to see him the next day to talk over the tests that I had asked the team taking care of him to do.  The ambiguity of not knowing his outcome was a thought that floated in my mind as I went home. I am ending my night praying for a result of a vision of him feeling better.

I walked away from the hospital, leaving my patient behind, but in the good careful hands of the staff in the hospital. I think of his words, “you have a blog to write” and I smile. Sure, I will work on my blog. He was one of my friends that read what I write every week.  It touched me that he read it, anticipated it and knew that I did that on Tuesday at the end of my day. I never know what I will write about, I just do. I let my day and mind settle. Tonight, like many nights, my thoughts are with those who are in the hospital. They linger with those that have ambiguity in what their outcome might be. It is a difficult place to be. Please know I am with you.

Goodnight my friends.

Mo

 

 

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Patient Care, Perspectives, Sarcoma

A confession to a friend

Dear Hannah,

Where does one start to talk to you? I guess simply saying happy birthday might be the easiest place. Last week Iowa read about you and it was refreshing to see how they were saying we miss you.

I remember when I first met you; I kicked your family out of the room so you and I could talk alone. Something tells me you liked that, and you felt I wanted you to tell me what you wanted from me as your physician. I acknowledged your adulthood and maturity. You had grown too fast while facing your cancer. That day we formed our bond of trust. I am honored to know that your family shared with me that you valued what I had to say. I felt very deeply about you and I was hurt badly the day you left us.

I read Molly’s blog with a deep admiration of her courage and how she wanted to grow.   I mustered up the courage to talk to you in a letter sharing my thoughts that have needed to come out. It is my way of closure. You stretched my heart to a place it had never been, your search for hope in me made me realize how we believed in each other. Knowledge of things sometimes makes it harder to watch what actually happens. I confess that I struggled to tell you in part due to how I felt. Your amazing spirit, the love of your family gave me the strength to do so.

I remember the love around you. The fear, the kindness and the respect. I remember your quiet demeanor.  On the day I knew it would happen, I stood silently beside your bed. I fought back my tears as I watched your shallow breaths. I sent you a million prayers in my heart, my eyes talked to you as I stood there in my own language and I said goodbye. Something I have done to so many who have allowed me the privilege of being a part of it.  

Perhaps I am realizing now that I can talk to you every day. Through those who love you and care.  

Dear Hannah with love from Mo.

 

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Perspectives, Sarcoma

My sister, my friend

Molly McDowell was only 21 years old when her sister died from osteosarcoma. The loss was deep and personal to Molly so she has dedicated her life to raise awareness of the disease and to get involved with research. She has applied for medical school and hopes to be a pediatric oncologist specializing in sarcoma. Today, Molly takes over my blog and tells her story of her beloved sister, Hannah.

“Metastasized…multiple lung and brain lesions…clinical trials…continue living life to the fullest”. I let the words sink in and repeated them in my head as I sat in disbelief in Mo’s clinic. How could this happen to someone so young with so many dreams and so much potential? My younger sister, Hannah, had battled osteosarcoma since the age of 10 and now it was going to take her from me. Hannah was my everything. She is my greatest inspiration and will forever be my number one hero. Losing a sister of age 19 is by far the toughest thing that a 21-year-old college student can go through.

During my entire college career I never knew what “normal” was. Normal to me was a constant worried, scared feeling. But now when I look back on it, I liked that normal. That normal meant that my sister was still here; that sarcoma had not taken her away from her family that loved her more than words could ever describe.

Sarcoma took so much from Hannah, but it never changed who she truly was. She was someone that everyone fell in love with the minute they met her. There was just something about her that could never be explained. She had a fight and drive in her that rubbed off on people. For a lack of better terms, she was bullheaded. That’s what kept her with us for as long as she was. She wanted to show sarcoma who was boss, and I am sure several would agree with me when I say that she sure did. She did not let it define her. She continued living life, gave so much of herself to others, and never let anything slow her down.

Hannah 1

She refused to take no for an answer. In her mind there was always a way. I believe that is the mindset that every cancer patient should have; there is always a way. Whether you have 3 days, 3 months, or 3 years, there is always a way to make the most of your life. Show the cancer that is trying to take over your body that it cannot control your life; it cannot change who you truly are deep inside. It wants you to break down. It wants to ruin your spunk, and your drive to live. Why would you ever want to give cancer what it wants? That was Hannah’s way of looking at it. She wanted to prove to cancer that it would never control her, and she definitely did.

Hannah 2

Hannah is the reason that I am who I am today. Every struggle, every scare and battle she fought, shaped me into an amazing individual with a huge dream. I have a tremendous desire to become a sarcoma specialist someday. I have a fight and drive in me that my sister had while fighting a disease that I someday hope to destroy. Without her I do not know where I would be in life. She introduced me to my amazing, loving husband who was there for Hannah through everything. Him and I were able to celebrate our wedding in her hospital room. We will be celebrating our one-year anniversary on February 5th. It is hard to believe that it has almost been a year. It has been a long, tough year, and I wish my sister could be here with us to celebrate. But I know no matter what that she will be celebrating for us in her own way. It was her goal to get us together and to see us be married. I thank God everyday that she was able to be there. She will forever and always be my sister, my friend.

Molly McDowell

Hannah 3

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