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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Uncategorized

To the moon!

We’re sharing a blog post written by the director of the Holden Comprehensive Cancer Center, Dr. George Weiner. Tomorrow Dr. Weiner will be in Washington DC, as a guest of Vice President Joe Biden, to attend the Cancer Moonshot Summit. Back here in Iowa City, we will host a satellite summit that can be followed live through the HCCC Facebook page. This summit is just the start to what might be the best chance our nation has of ending cancer as we know it.

“Mo, what’s your cancer moonshot?”

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“My moonshot is for us to remove cancer from the human race and
put me out of business.”

 

About a year ago, I blogged about “going to the moon” as a metaphor for cancer research. More recently, the phrase “cancer moonshot” has taken on new meaning. In his state-of-the-union address, President Obama charged Vice President Biden with refocusing the nation’s effort on cancer and cancer research. To quote the President – “Vice President…

via Cancer moonshot – all systems “go” — Holden the Line on Cancer

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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 and Sarcoma

Take a Moment…

We recently published Nancy’s Promise, a newsletter which shows the scientific enterprise created from donations made by generous patients. I’d like to take a moment to thank all of those who participated in this endeavor. It’s been an incredible and successful journey. Today I reblog my earliest post as it is a promise to all of my Heroes.

Mo

Let us take a moment to reflect on why we do the things we do.

It’s for my heroes.

For my patients that have battled melanoma or sarcoma and have helped move science forward. They truly are a part of every decision I make.

They are my true teachers, my inspirations.

Those who have suffered with an ailment that drives us to understand what makes it such. Those that help me help someone else because they dared to take on something new.

It is amazing to sit alone on a Tuesday night, thinking about things. I often sit in silence, and talk to those who have passed. What did I learn? What could I have done better?  What did their lives leave in lessons? 

I must admit that I miss my heroes as I sit alone on my couch letting my day settle. They motivate me and enrich a desire in…

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Melanoma and Sarcoma

Muffled.

Cancer interrupts lives. It takes away from our present moment like a thief, stealing what was dismissed but is really precious. This is what she taught me when she came to see me today. I share with you an old blog. Muffled are the voices around me.

Mo

This is a difficult blog for many reasons that I will not divulge. But I will take you to where I am. 

Immerse your head under water at a poolside. Around the pool you can hear the loudness of all the people around you. You dip your head to dive beneath the water. As you dive deeper these voices fade and become muffled. Submerged you know there is something out there but you are unable to understand it.  There is some security in not being able to hear exactly what is being said. In the water you feel somehow protected, but vulnerable because of this perceived security. Those standing outside the pool talking about you, trying to explain complexity to you. You hear a little but you choose to stay secure. This is where my patients go when they are diagnosed. When what I say to them does not quite…

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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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Melanoma and Sarcoma

Tad

Today was the annual Tips for Tad fundraiser at Pints in Davenport, Iowa. This event honors the life of the late Tad Agnew and raises money for my melanoma research program. I made an appearance and said a few words. I’m re-blogging my post from last year about Tad in case you missed it. He was truly unforgettable.

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Mo

He was very young and it had recurred in his brain. Tad was playing on his computer when I walked into the room. He looked healthy, his eyes bright and beaming with intelligence. I sat across from him in the old cancer center and he asked me question after question. I connected with him instantly and we talked. He always came alone, never accompanied by anyone. I respected his independence. He looked things up on the internet brought them to my attention. My melanoma program was young then and new therapies were still not available. It was hard to tell him about death, to share with him the lack of treatments available and to tell about how clinical trials work. He took it all in and shared with me that he would like to try something. He participated in a trial only offered here in Iowa. He became an instant…

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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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Melanoma and Sarcoma

Closure.

I just reread this ….I am touched too by what I write. Your comments have all made me feel special…..really….I am just that idiot passing through

Mo

“I didn’t know I could talk to you” he said to me in the clinic today. We hugged and he sat down, “It happened so fast.” We were both fighting back some tears. “She was an amazing woman” I chimed, trying to find the right footing as we talked.

It was the end of my clinic and a family came to see me to find closure in the care of their loved one. This is a side of me that is very private and my voice is sharing this with you. My heart is not.  It is a rare event that I come full circle and have a chance to talk about someone who lived.

What is important to me in the closure of a patient who passes? I’ll share this intimate detail with you now.

When patients cross my path on their extraordinary journey, I deal with their cancer…

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Melanoma, Patient Care, Perspectives

Permission

“You’re a good man”, said my patient as he hugged me. He was tapping me kindly on my back. He had waited for over an hour to see me. Wheelchair bound I was saddened when I walked in to see him. I was realizing the end was near as the quote of the series Dr. Who flashed through my mind…when The Doctor says….” I am not a good man, but I am not bad man, I am definitely not a president, or a general or an officer…….I am in idiot with a box and a screwdriver, helping out when I can, learning.” The obvious part is that I am helping out when I can, and the rest of the truth is that I am an idiot passing through with the knowledge I have acquired, and learning as I go. I discovered that my patients have been teaching me something they do very well; teaching me how to die. Here he sat in the wheelchair, he looked ready. What was he waiting for?

I have acquired an innate understanding of death. I recognize it, I accept it, and I too am scared of it. It is a stretch to talk about death like we do about life. Death is more inevitable than life itself yet we tend to dismiss it. We focus on life, and on the aspects that are important to develop a career, an education, a pathway and a life, a relationship and a way to replicate ourselves and bring in more lives to this world. But, as I talk to so many who are ready to transition to death, I tend to think of it as a suspension. That is another story for another day. This man was a little different he made a trip to see me, but I am hiding the ending behind the veil, because it is what is making my statement more powerful. He is making me talk about death to you as intimate, as something there, and maybe we should not be dismissing it. We tend to not want to embark on the journey that challenges our intellect or our comfort, or our narcissism. We do not talk about it objectively or even humorously like we do about a thrilling story in Halloween, not every day, not all the time. We do not talk about it with a bit of comradery, or some spirituality, or some vulnerability? “It” is the way we observe it. Why are we talking about Dr. Who?

He sat there. Haggard. I told him it was time to die. That he should be made “Hospice”, that his cancer was everywhere, and that there is nothing I could do. I was sure of that. My mind fighting the words, “We have had this conversation……why did you come?” He gracefully accepted and hugged me. All the people in the room did that. Why so thankful I thought? How could death today not be so familiar to me, I say goodbye to so many. The relationship being re-defined. The news came the next morning, he died early morning peacefully surrounded by his family. I make sure I always ask how. My heart goes out to his family and I was sad. He knew what he was doing. He signaled that he was dying, as if he wanted permission to give in to its call. He wanted to not let me down, not let his family down he was fighting for those around him. Once the news was out, he let go.

I am just passing through, learning from those who travel into the suspension they go.

Mo

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Patient Care, Perspectives

Injured

She died on Saturday evening. A wonderful woman; elegant, sophisticated and intriguing. She had battled her cancer; therapy after therapy, always trusting the decisions being made always trying to remain ahead, never giving up or in, never wavering. Her last therapy I recalled had injured her lungs making it hard to continue. I go back to that moment, it’s not easy to know that our therapies have consequences and sometimes the outcomes are not what we want. Damages from our treatment, whether in the short term or the long term, are now playing an important role in our choices of what we treat our patients with. Why bring this up now?

As most of you have realized I have not been blogging for a long period of time. There are many reasons, which I will not divulge, but I will share one. Over time I have been sharing intimate stories with you. Each blog is truly a touching experience for me and hard sometimes to materialize into words. Yet I found myself doing that time and time again. I had not realized that sharing these stories was cathartic to some and injurious to others. Each blog represents a humans experience and journey with me. Such is surgery and chemotherapy, they are painful, often helpful, and not always curative. I found myself revisiting scars and wounds that made up the utter fabric of my existence. It was hard to put a positive spin on things, as often they have sad endings. It was hard to read them after I had written them. So I decided to pause. In this pause I have been reflecting and rethinking, “how am I supposed to write? What reason do I have to write?”

Today I received an email from a patient who had survived her disease. I am quoting it word for word….please take a moment….to read these powerful words.

“Hi Dr. Mo,

I felt the need to write and thank you. After my last visit this past summer we discussed your blog and that day after our appointment I started to read it. As I sat in waiting rooms all day for my appointments I continued to read post after post to pass the time and couldn’t get enough. I signed up to get email alerts when new posts were written and pretty soon it became what I looked forward to each week. Between all the junk mail there would be the notification that a new post was up and that meant that I had a five minute break from the world.

This past fall I have been extremely busy with my job dealing with lots of traveling and deadlines and sometimes the stress tends to pile. No matter how overwhelmed I would be feeling when I started to read one of your blog posts all the things that seemed important disappeared for that short time.

I tend to worry a lot and am a bit of a control freak I’ll admit, but when I was diagnosed with cancer things that I thought were so important no longer compared to having it. That experience gave me a new way of living and seeing life with a new perspective. No one tells you though that if you are lucky enough to win the battle with cancer that eventually that new outlook you have on life tends to fade once things eventually start to go back to normal. There are times when certain things bring me back to that way of thinking when I did have cancer, whether its a movie, a book or examining my scar that I realize some things I worry about just don’t really matter as much as I think they do. Your posts are one of those ways I am brought back to that state of mind and remind me how fragile and short life is and how the things I was worrying about before are nothing compared to other issues in life and what I went through and could have gone through.

When I had cancer I didn’t share my feelings and thoughts that often with friends and family. I just felt no one knew what I was going through and I was trying to keep everything the way it was before. I also felt like I wasn’t worthy enough to talk about it since I had it much easier than lots of other cancer patients. I’ve noticed since then emotionally healing from having cancer has been a lot harder to deal with. Every post of yours I read helped me deal with those issues and heal in some way. Things I had thought about and didn’t know how to put into words were all there. The fact that you were able to cure me physically and even somewhat emotionally is beyond amazing to me. I have no way to tell you how thankful I am other than my words.

Although I know you don’t write as often now and I know you have good reason since you are a busy man I want you to know that not only are you a great doctor who saved my life, but you are a great writer who has helped me heal. “

Thank you my hero, for teaching me that all injuries heal including the deepest wounds. Your words have touched me deeply. That despite the injury that cancer inflicts on us, there are lessons that broaden our minds and deepen our senses to the ongoing conflicts we face in life. Thank you for opening my mind to the reactions and usually not shared. I truly am touched and indebted to your kindness and your words have far more impact that you can possibly imagine.

Mo.

 

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Connections, Melanoma and Sarcoma, Perspectives

Fog

I sat with my patient to discuss her progressive disease. It has now spread to many sites and it was deemed incurable. We had done several tests, and that much was certain at this point. I sat across from her and her mother. I started the conversation about treatment, but I felt I could not complete it. My patient got distressed and was no longer receptive to the information I was trying to relay. In addition to the tears in her eyes, the air between us felt foggy. I was not expecting her to “bounce back” and be with me in the session just yet. I wanted to say, “Go home come back in a week”, but I find that most patients want me to still speak after they’ve mentally left the session. They want me to go on a soliloquy penetrating the fog. I find that most want some instantaneous miracle to come out of my mouth. It saddens them further when I do not have that miracle. But I have to get through this conversation about the treatment, to get some sort of plan in place. All I want to say is go home and come another day.

 

Her mother took center stage with tears in her eyes and started asking questions to make sense of the decisions that needed to be made. Another set of ears to determine the next course of She pulled me in and pushed on the discussion in the midst of the fog that now clouds the mind of my patient. My patient was tearful, and her mind preoccupied and weary of what she is about to face. What do you say to someone who is young who has been robbed of the years yet to come?

 

A fog is blinding, the road that was clear is now murky. There are many dangers. I have never liked driving through a foggy day. I always say when it will end, having always to remind myself that it will eventually end. My eye sight limited, my vision obscured. My senses are heightened, ready to react, and my fears accentuated. I can only imagine the burden a diagnosis such as this places on the patient. When a fog descends upon your life, it’s not a highway, a road or an alley, but rather your life. I reflected on this, as drove in this morning through the thick fog that had engulfed Iowa City. The clouded roads, nowhere to hide from it, affecting everyone. I know that it eventually lifts but sometimes the feeling that it will not, overpowers. That is the time I wish I could tell my patient go home, and come out when the weather clears up.

 

I can’t lift the fog even if I try. The fog is in front of your eyes. The fog is in your way, the fog is in your life right now; but I know it will lift one day, and I hope that day is soon.

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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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Melanoma, Patient Care, Perspectives

Fabric

“Is it a myth?” My colleague standing next to me asked in the back room. “Treating cancer, are we really doing anything to help these patients?” I pulled up a scan of a patient diagnosed with melanoma that had spread to the lungs, who was receiving a novel agent and showed the questioner the response. He stared “wow, you are doing something!” As I looked at the end result, I thought it was a masterpiece. How did it come about? Was it just the permissive circumstances this time? Like a painting of a landscape that was itself beautiful, or the weaving of a magical fabric that falls beautifully regardless of the tailor’s skill… or a simple dish with overpowering spices that work every time? I smiled. I’d like to think I am all 3 of them.

I never walk into a room to deliver bad news smiling, and when I am clearly smiling as I enter the room that simple deduction is hard for my patients to make. I had a college student follow me in clinic today and we both walked into the room together. My patient stood up and amicably said hello, in his usual way, we were quickly chattering off, laughs, jokes and playing catch up.

In the midst of it, I tapped him on the shoulder and told him that his scans looked great, there was no evidence that the cancer had come back. He gave me a very solemn look, as he stared back wanting to believe me. “Really Mo?” he asked. “Wow, that is great.” We talked about his fears and where he was in his life. He shared, he no longer was scared the night before the scan, but he really became tense just right after the scan. I told him they needed to increase the medication they give him prior to the scan so he could come in all casual and relaxed. We all roared in laughter.

Then came the hugs. Everyone in the room gave me hugs. My patient startled me with what he said next. It was a truth best expressed from him, and it’s when I do my best listening. He did not talk directly to me but to the college student who was silently observing everything. He said, “Let me tell you something, this man, helped me make a difficult decision, he navigated all my options carefully, not omitting anything, he gave me choices and then showed me the way to go and that is why we chose the treatment, and it worked!”

Ah I thought; don’t dismiss the tailor who weaves a good fabric, the chef and how he adds his signature spice, or the painter who makes colors come alive. I realized I served him well and I still do. He brought alive his thoughts and expressed them to me helping me see through the fabric of his reality.

I listened intently to his thank you, taking it in whole heartedly. His words were heartfelt, and so was my joy.

Mo

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Patient Care, Perspectives

Defeated.

Defeated. She sat there, her swollen abdomen so uncomfortable. The news of her heart function excluding her from the clinical trial I had planned on enrolling her in like a trigger to an explosion brought a flood of tears. I pull up a chair and hunker down for my discussion. It is just that, hunkering down. Unafraid to state the truth that things were not going well. I have found myself lately quoting Voltaire quite a bit, “the art of medicine is to amuse the patient and let nature cure the disease.” She was clearly not amused, and nature was not going to cure the disease. Rather, nature was the disease.

My hands grappling with the tissues to absorb the tears. A conversation begins my words weaving a fabric of understanding. We talk about getting her comfortable, removing the fluid, helping the heart a little bit with a medication, and starting our treatments. It was Interesting to see her tears drying up. And she looks at me and says “you are making this up as you go along”…..I smile. Insightful she reads my mind, yes most of the time that is what I do. I am presented with a difficult scenario and as I think out loud, I find the answer. Words buy my brain some time to think, the humor facilitating the delivery of the plan I have to give. The laughs allowing the pauses to deliberate an action that I myself might not have been aware of.

I was in awe of her perception of me. She was slowly coming out of her defeatist state, and she was starting to believe that she could depend on me again. That is the “art”………..oh Voltaire how right you are. Amuse the patient and nature cures the disease. Transformed, my patient begins to see the words I share, the plan of her care now becoming a reality in her brain, she logs on to hope, she redefines trust and she looks at me and says “ you are the man with the plan.” Her husband watches this eagerly, asks the right questions and becomes engaged. She wants to not give up, how many have walked this path. She is smiling…..oh yes this is my victory.

The question is why do they come defeated? I watch this human struggle, and I marvel at how it is overcome………….every time……even if the end result is death. It is not death that we need to conquer, but rather our feelings of defeat (perhaps that is the disease). Death is a part of life, and cancer is a part of nature. It is not a victory for cancer, but for the person who learned quickly to embrace their health, their fight, and their treatment and own it, that even death can be conquered. My friends, it is in our human connection we find the strength to fight some of the hardest unknown that I have come to respect.

-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.

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.

 

 

 

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Patient Care, Perspectives

2 Minutes

I have been in practice now for 10 years, not counting my training and medical schooling. My practice and approach to patient care has evolved over time. I started blogging 1 year ago, and this has uncovered emotions in me that I did not know existed, and has proved to be an amazing way to communicate with my patients. Comments from readers, friends and family have opened my eyes to a side of cancer care that I had not been before. Through this I have interacted with so many people at different levels in their own inner struggles.

I think of eyes as cameras capturing moments, faces, and emotions with ears recording snippets of conversations, laughs shaking voices and silence when words do not come out. My brain stores memorable events, in short spurts I connect the events, the decisions, the emotions that they stirred, the results they brought about and this hard drive contributes to my thought processes, my experience, my memories, my regrets and my pride. My life story and those of my patients constitute a switchboard of things that worked, things that were close calls, and things that caused harm. These are powerful, invaluable, and unforgettable events pushing me to share it as science, knowledge and a voice in a blog.

I am thinking about those interactions tonight with those who I have met. I am considering, what it would be like if I was granted 2 minutes to talk to each person again. My excitement builds up as I think who and where? In clinic? Or maybe over dinner, in a speed date format? Or better still in the park or at a party? 2 minutes with each: the dead, the living, the survivors, the fighters, the families and the learners. Would I pitch my thoughts or would I share the many things I have learned? Would I start with those I disappointed, or those I had the most success? What would I say?

Tick tock goes the clock and we all know it goes only one way. At the end of my clinic day, looking back at the many hours spent counseling my patients and making decisions, I believe if I did have the “2 minute” stage with each human I have interacted with I would want to say:

“My decisions were empowered by your choices in life and what were important to you given the knowledge I shared. Please know you have added to my experience that goes forward to help someone else and it is never idle. There is no event that you have faced that goes unnoticed and that I remain in your debt for the knowledge that you have kindly shared.”

Thank you.

2 words that capture much more than 2 minutes could ever have.

Mo

 

 

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Patient Care, Perspectives

Fresh Eyes

Many people come in to my clinic to shadow me and follow me around seeing my patients with me. Today I have asked 2 college students to share their thoughts. I had sent them both an email that said:

“Thank you for coming to the clinic, you and another college student have enhanced my understanding of many things that practice can offer. I want to task you with something, not sure if you would do it, but worth asking. Can you write to me from your age perspective what you perceived in the clinic about things like death, treatment, cancer and patient care? I would welcome the feedback. Did you enjoy it? What particularly was intimidating? What did not jive? Or things you liked or questions that persisted in your mind………..”

Here is what they had to say:

 

Mo,
Before shadowing in an oncology clinic, cancer was a statistic, it was something my older relatives had gotten when I was too young to really understand, it was a great research field, it was cells dividing out of control. When I stepped foot in the first patient’s room, cancer was suddenly none of those things. Cancer was right in front of me; it was a person, a family, a lifestyle.

As a person who tries to avoid less-than-happy emotions at all costs, I have always tried to take a passive approach to death. Somewhere lurking inside me were all the thoughts about death that I tried to keep shut away, telling myself I would deal with them when I had to. After the first time I followed Mo around his clinic, I left in complete shock, telling myself I would never be able to do that kind of clinical work. I saw how strongly death affected Mo’s life, and I was not ready to let those thoughts out of their caged place, let alone work with death every day. I told myself that I had a wonderful experience learning from Mo, but there was no way I would be able to do that as my career. When Mo invited me back to shadow another time, I felt compelled to face the unsettled feelings of the first visit.

I am extremely thankful for Mo’s generosity in letting me into the clinic another time because leaving the second visit, I had a completely different outlook. I like that treatment is a puzzle. Not everyone is able to have the same treatment with the same outcomes because of a multitude of factors. Therefore, each day, each patient needs complete concentration in order to figure out what kind of treatment will work in each specific scenario.

It was shocking to me what good spirits many of the patients were in. Cancer is such a scary word, but it almost seemed as if many patients were moved by the solemnity of their condition to fight not only for themselves, but also to help future patients.

It was either a defense mechanism, or truly just caught up in all the information, but I noticed that almost every patient I saw was so focused on the logistics of fighting the cancer that they did not seem focused on death, at least not on the outside. They asked very few emotional questions, the types of questions I had expected in an oncology clinic; most questions were in search of more information about what the cancer was doing and what was the next step they needed to take. Perhaps this is because while they are out living their lives, these thoughts of death creep in, but when they are in the walls of a medical facility, they feel more at ease with real answers instead of the tales their minds come up with.

The mind is very powerful. It can deceive, create, and heal. I am still not exactly sure how exactly the mind plays these roles in a cancer patient, but just in the few hours I was observing, it is obviously that long after the body becomes ill, their mind still continues on, in whatever fashion it can.

-Hailee Reist

 

Mo,
When I first stepped into your clinic, the thought of death was last on my mind. I guess it didn’t register with me that I was going to see terminally ill cancer patients. When visiting patients I found it rather odd to think that these people had cancer. The mood was always light, amid witty jokes that always made the patients laugh as if they were seeing an old friend. The topic of cancer obviously did come up, but for the most part its discussion was very limited upon your arrival to the room. I found that fairly surprising, given the severity of their ailment. The word “death” has never once been uttered in front of patients, yet you told me behind-the-scenes that some might not live for long. It was remarkable to see such juxtaposition. The light-hearted mood was an especially effective mask that seemed to propagate happiness and hope instead of sadness.

Although we had many discussions, there was a particular conversation between us that stuck out to me. We were talking about the future of medicine and you brought up the upcoming battle between surgery and drug treatment. I never really thought about how we are essentially one pill away from curing cancer and that surgery in the future may not be as relevant as it is currently. That really struck a chord with me. It was very interesting to think that surgery as a profession may decrease in demand in response to cancer drug therapy. That argument has definitely inspired me to think on the long run and ponder about the competitiveness and need of certain medical specialties.

Overall, I very much enjoyed the experience. I was able to observe many diverse cases and I was lucky enough to see some patients twice and see how they have reacted to their treatment. I am glad you exposed me to medical oncology. This has been an educational experience that I sincerely appreciate. Thank you for allowing.

– Gal Wald

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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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Patient Care, Perspectives

Frazzled

The tension in the work room was mounting. The research coordinator sat next to physician’s assistant who was waiting eagerly by the phone. She was waiting for a phone call from the radiologist. I knew who this was for as I had walked by the room multiple times and seen the patient pacing up and down in the room very anxious to know the results of her MRI scan. It’s not an easy sight. The pacing and that anxious look. The door was open as I passed by, her face staring at me longing for assurance. I gave none, because I did not know the result yet. I offered a simple smile, but this does not have the wanted effect. She continued pacing.

I feel a need well up inside me to remove this patient’s anxiety. Patience, my mind says, we have been down this road before. I’m ready for both battles, but not eager to engage in the battle of bad news. I continued what I do best, seeing other patients. I do not like not knowing too, I thought. I was beginning to get anxious myself, it’s taking too long for the radiologist to get back to us with the results – a sign perhaps that this was not going to be good news after all. I regretfully conjured up the thought of giving bad news. I carried that with me in my heart from room to room as my team patiently waited by the phone. She was not alone in this. But I am sure she felt that she was. We were all worried. That is a feeling we rarely share back with our patients. It’s the feeling that we need to know, for better or for worse.

It’s hard not to get involved emotionally sometimes waiting in anxiety for a test result that might determine the next treatment or seal the fate of a person. The phone finally rang. It’s annoying sound shattered the pensive feeling that surrounded it. It was like waiting for your final grade after an exam you had studied so hard for. I stood and watched, allowing the reality of the truth to become manifest. Her voice was solemn “yes” she said listening intently and jotting down what was being said. I could not hear the radiologist on the other line but I could hear the tone of the voice of the person receiving the news, it was reassuring. Her voice heightened with every response listening intently as the radiologist told her his thoughts about the scan. Each response she gave was happier than the previous. The coordinator and I were smiling. This sounded like good news, the tension in the air very quickly melting away.

We all walked into the room. Frazzled, my patient’s tears were quick to show, and we all shared the news that things looked better than they had seemed. In the rush of it, I hugged her and she started to cry. It was a powerful moment captured in the cathartic delivery of the truth after a very long wait. It was worth it in the end. The coordinator joked “now you have to fill out the questionnaire”, revitalized, the patient just said, “happy to”.

I have been through these times with many people, with them on this anxious journey. I tell you I do not like it one bit, the wait, the pacing, the lack of knowledge and the race of emotions as the truth unfolds. Experience has taught me to be patient as sometimes the unexpected does happen and the wait was merely a mask behind the victory that needed to be told.

Mo

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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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Melanoma and Sarcoma, Patient Care, Perspectives

Yell

Her face was ashen as she walked into the clinic room. Her movements were slow, and deliberate. She was clearly significantly fatigued. Not the bubbly person I knew her to be 2 weeks ago. Clearly something was amiss. I was walking to see another patient, but my critical eye could not dismiss that my patient was in dire distress. When it was her turn to be seen, I entered her realm. She was lying on the examination table with a blanket up to her chin, the blood pressure cuff was beeping a bunch of numbers at me, and the room’s neon lights were turned off to make her more comfortable. I stood at the foot of the bed and looked deep into my patient’s eyes. Examining her as I would, fully present, I noticed as my coordinator scurried to remove the cuff from her arm and get her papers together. My patient was in trouble.

I looked deep into her eyes. She was participating in a clinical trial offering a new agent for the treatment of her disease. It was clear to me that the treatment had taken its toll. I was saddened and angered by her ill physical condition, but how can you show your anger to a person you highly respect. Someone who had taken a chance to help herself and so many others by participating in a trial that might define the next treatment for the generations to come who are plagued with this disease. I asked her husband “How long has this been going on?” He replied “for the last 10 days. She has been sleeping for almost 18 hours a day.” She was fatigued to the point it was interfering with her life. “I did not want to bother you”, came slowly from her lips “I just pushed on wanting to make the treatment successful”. Ah, that common feeling of wanting to do more than what is expected. Here is what I have to say to that, to the patients who feel they do not need to reach out when they are in trouble. Don’t be silent, YELL. Let me know, make as much noise as you need to, your voice is always heard, you are alerting me to things I want to know and things I can help you with, averting a potential danger. Don’t wait, don’t ever think you are a bother, and don’t ever imagine you interrupt or annoy me; I want you to be an honest messenger to an event that I can help you get though. You are a beacon to help me, and I am the lighthouse that shines the light to help you through these troubled waters. YELL.

We talked through humor and we made a laugh of it, I guess that is the way to express your anger to those you respect. “I am such a Dodo” she said, “I just did not know that I could bother you even with this”. Her husband’s eyes filled with tears as he realized he could have intervened earlier. “It’s ok” I said, ” I’m an oncologist more is always better, let’s hope it kicked your tumor’s $@# for the trouble it has put you through”. That brought a few cackles. I saw what I needed, the relief that she had shared her trouble and that once again it was not her responsibility for the decision. It was mine. I reassured her, asked my coordinator to check on her every other day; till I knew she was out of the woods. I said “it’s not your decision any more to just not tell me, I am going to have someone call you to make sure you get out of this, safely”.

My friends, yell, when you think it does not count, yell and you will be heard. It’s my job to make sure you live your life, and not suffer unnecessarily. Yell. I want to know how I can help you. I will always be there, and with the knowledge I have I will guide you to safety.

Mo

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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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Melanoma, Patient Care, Perspectives

Trash

Once a week we are all cognizant of taking out our garbage and filling our recycling bins. It’s an active act on our part that requires the patience to collect, sort and remove waste from our homes. But it is not all us. There is a dedicated service that comes and removes it from in front of our homes every day whether it is raining, snowing or just plain humid. It appears to be important for each one of us weekly. Some of us look forward to it; some of us actually dread it. What is clear is that the service runs daily with a dedicated staff that makes sure that this is done consistently throughout the year. It is amazing, noble, and often forgotten.

I was born in a small town called Ahmadi in Kuwait, where I lived until the Iraqi invasion in 1990. While this moment in my life is filled with many stories, I will choose one that I truly feel has touched me more than anything else I know about how communities thrive. During the occupation of Kuwait in the beginning several months, all public services ceased to exist. The one service that was sorely missed was the garbage truck that took the trash from in front of the people’s homes. As days went by, I watched as piles of waste increased on the streets, in alley ways and in front of large mansions. It was filthy, smelly and nauseating to walk amongst these streets. Flies and rats became plentiful feeding off what people threw out. It was a frightening vision of the importance of not forgetting how vital this service was to the community it served.

Once a year, we are pleasantly reminded that it is “Melanoma Awareness Month” and through the commotion of our lives we attempt to do our best to make visible that which needs to remain constant throughout the year. Three of my friends shared with you stories that spoke of their struggles with this deadly disease. There are many more that go untold that are held in the hearts of the dedicated staff that work diligently all year long to provide the care that my patients need. Today I sat in clinic and watched each one of them do their work. Their work may feel inconsequential, my nurse answering a patient phone call, my medical assistant “rooming” the patients and my physician assistant telling me the latest troubles of the patient she had just seen. In my eyes, each played on their instrument strumming almost perfectly. I can only imagine the amount of chaos, just like in Kuwait, if I did not have my team. What an honor to be a part of them!

In this month with my heart, I take a moment, to honor the untold stories of our heroes, those who make their lives a part of others helping them through difficult times, the families that support my patients traveling through these troubled waters.

So the next time you take out your trash, reflect on that which really is taking care of you.

Mo

 

In case you missed my guest bloggers who wrote for Melanoma Awareness Month, here are the links to their stories:

On May 7th, Tom Armitage shared his battle with melanoma in his blog entitled “I’ve Got You Under My Skin”.

On May 14th, Molly Menard shared the story of her husband’s fight with melanoma in her blog entitled “Melanoma? That’s it?”

On May 21st, Brett Yates shared his father’s journey with melanoma in his blog entitled “Cheers and Have a Wonderful Life”.

Thanks to all of my guest bloggers who shared their stories this month!

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Melanoma, Perspectives

Cheers and Have a Wonderful Life!

Since May is Melanoma Awareness Month, I’ve invited others affected by melanoma to guest blog on the 7th, 14th and the 21st. I’ll wrap up the month by blogging again on the 28th. Today’s blog is written by Brett Yates. Enjoy.

 

We’ve all been conditioned to get our regular checkups, right? A physical every year. A dental cleaning twice a year. We even get the car oil changed every 3 months. Why isn’t a skin cancer screening on that list of necessities we take care of each year? It should be.

Our Story

We had known that its return was possible for years, but if I’m honest I wasn’t considering it seriously. So, on January 31, 2011, it was with great surprise and shock we learned that my father’s melanoma had spread. Dad was first diagnosed with melanoma in 2007 when a tumor was found growing on his shoulder. It was surgically removed and he hoped that would be the last he would hear of it. It returned 3 years later and was again surgically removed. But this time it stuck around. Tumors were discovered in his liver, lungs, spinal cord, and brain.

From the time of Dad’s original melanoma diagnosis in 2007 to the end of 2010 before his tumor metastasized, his life was fairly normal. He was getting checked regularly and doing everything a person with a melanoma diagnosis should do. However, once the cancer spread, it did so with a vengeance. We had less than 3 months with him after the stage IV diagnosis.

Brett Yates- Yates Family

My brother, Dustin, recalls one of Dad’s last outings:

“I remember Dad had wanted to go down to the KWWL studios for quite some time for a tour and we finally got it scheduled. It just so happened to fall on Valentine’s Day 2011. We made an evening of it and surprised him before we went out to eat. He had no idea that we had been planning it. He was very surprised. He got to meet the whole group and even got to sit in Ron’s chair. I’m forever grateful to Mark [Schnackenberg], more than he’ll ever know, for being so generous in allowing us to come for a tour and even hang out for both of the evening newscasts.

Who would have known at the time that it was one of the last outings with Dad. It also turned out to be the last picture of him. Looking back at it now, I can’t help but think how very thankful I am that we were able to do that for him.“

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Who Was My Father?

To give you an idea of who my father was, what his effect on the world was, I need only tell you about his visitation. I stood for nearly 4 hours greeting a line of people wrapped around the block who had come to pay their respects. Many waited in line for an hour and a half before reaching the visitation room. My father had an effect on people the extent of which I hadn’t truly known until that visitation. He had a quiet emotion that was often hidden behind his strong, boisterous personality. I think that is what endeared him to so many people. He loved life so clearly and loved the company of others. It’s that effect on people we should all strive to replicate. And if we’re lucky, maybe we’ll have the same turnout when it’s our time.

Brett Yates- Steve and Sons

How We’re Fighting Melanoma Now

Playing golf was one of Dad’s favorite pastimes, so every year around the anniversary of his death, we gather to celebrate his life over a round of golf with the goal to raise money for research and awareness of melanoma. To date, and with the help of everyone who participates and donates, the tournament has raised over $50,000 for research being done by Dr. Mo and his team at the University of Iowa.

Brett Yates- SYMA Check

My mother describes the reason for wanting to do the golf tournament by quoting something she read once:

Why does God allow disasters to happen? Is He punishing us? The Bible does not give an adequate explanation for disasters any more than it can for diseases such as cancer. There are times when no answers will do. There are times when nothing else will do except we roll up our sleeves and pitch in to do whatever we can to reverse the bad fortune of the moment.

Brett Yates- Steve and Lani

We’re hoping to do the golf tournament each year to continue the fight against this terrible disease. We would love to get more people involved. If you’ve been affected by melanoma in some way, maybe you have a family member who has died, maybe you’ve survived melanoma yourself, or maybe you just want to be involved, we’d love to hear from you. This past year, Molly Menard, who wrote last week’s post, was there with doctors from Iowa City who volunteered their time for free skin cancer screenings. Those screenings may have saved someone’s life!

Let’s work together to end this disease. We’d love to acknowledge you and your family at the event. We’ll even change the name of the tournament to the Iowa Melanoma Golf Tournament (or something more catchy :)) if more families join the cause. You can learn more about the tournament at www.steveyatesmelanomaawareness.org.

A Final Note From Dad

I’ll leave you with words from Dad himself. Quoted below is an email he sent to his colleagues at John Deere upon his retirement. It is surprisingly appropriate, especially if you think of his retiring not just from 31 years of work, but from 63 years of life.

“Well my time has come. It’s time to hit the send button on this last e-mail.

Today is my last day as an active John Deere employee. I do not know where the time has gone. It has been a good run, but I am looking forward to the change. I’ve known many of you for more than 30 years. Some say the toughest part of retiring is saying goodbye to friends and colleagues…

Well, for me…what they say is true.

I wish each of you all the best in the years to come, both within John Deere and personally.

I’ve enjoyed working with…and knowing…all of you.

God’s rich blessings and best wishes to each of you.

If you need a 4th to complete a foursome sometime…give me a call.

Cheers and Have a Wonderful Life!!”

Brett Yates- Steve North Endzone

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Melanoma, Perspectives

Melanoma? That’s it?

Since May is Melanoma Awareness Month, I’ve invited others affected by melanoma to guest blog on the 7th, 14th and the 21st. I’ll wrap up the month by blogging again on the 28th. Today’s blog is written by Molly Menard.

 

I am not a blogger. I had to google what blogging is all about. I am sure this is not your normal kind of blog, but here it is. I am sharing with you the dates I replay over and over again in my head. Many things that happened in between are painful and I don’t like to think about them. Hell, the stuff below is painful. But is there anything about Melanoma that’s not?

January 2007.

Mark, my husband, walked out of our bathroom one night in his boxers. I remember it just like it happened a minute ago. “I think my mole is changing” he said. I could not tell, but then again, I never paid it any attention, it was always there. We googled moles and came across pictures and at that time, the ABCD’s of Melanoma (sometime between 2007 and 2011 they added the E to the ABCD’s of melanoma). His mole did not look like anything we saw. So we did not worry.

Mark Menard family42010

A few months later I said to Mark, “I think you’re right; your mole is getting bigger. Maybe you should call and get it checked out.”   He put it off.   We were not too worried.

June 2007.

One day in late June, Mark was wrestling around with our youngest daughter Stacy who was 7 at the time. Mark grabbed his abdomen and dropped to the floor. Stacy’s foot had rubbed against her daddy’s mole, ripping it off. Mark decided to have it taken off. His appointment was right before the 4th of July.

July 2007.

A few days after the 4th, the phone rang, “Hello, this is Dr. Smith from the dermatology clinic at Balboa Naval Hospital. Is Senior Chief Menard available?”   I knew right then that something was wrong, because really, how often do doctors call you at home? She told me his biopsy results were in, he had melanoma. She had already made his appointment with Dr. Chan, the surgical oncologist. I remember thinking, “If he’s going to get cancer, at least it’s this one.”

Before July was up, Mark had surgery – a wide incision and lymph node biopsy. Dr. Chan gave us the news that one lymph node from his groin came back positive, the melanoma had traveled. Another surgery was scheduled in a few weeks. They were going after more lymph nodes, this time in his leg. That is when we knew it just got serious.

Mark Menard sandiego walk2010

December 25th 2009.

It had been two and half years since Mark was diagnosed with stage III Melanoma. In that time, Mark had a number of surgeries, scans, treatments and we lost count of the number of doctor appointments.

After putting the kids Christmas presents under the tree, Mark and I crawled into bed shortly after 1:00am.

I woke up almost an hour later. Mark was having a seizure. The next thing I knew, I was on the phone, repeating over and over 10182 Voge St, our address. 14 minutes later, the paramedics arrived. I hung up the phone with the 911 operator. Two paramedics and six firefighters were crammed into our bedroom and the hallway outside. I sat on the hallway floor shaking. Mark finally came too. He was confused. His first question to the paramedic, “Where’s my wife?” All that is going on with him and he was worried about me.

5:00 a.m., I call our moms from the hospital, crying, begging for them to pray.

6:20 a.m., Christmas morning, four hours after Mark had his seizure; I sat next to my husband, holding my husband’s hand, trying to be brave. The ER doctor sat on the other side of Mark’s hospital bed. Mark looked scared. I was scared. We knew what was going on. We knew what the doctor was going to say

“The CT scan shows one tumor in the……..” I have no idea what he said after that. I was rejoicing! One tumor! Not multiples – just one!   Thank you God, just one! We can fight one! It was a small victory for us. Thank God! Just one!

I called “the moms” with the news. Both moms had already booked their flights, they were on their way. Our neighbors loaded all of our Christmas presents into their car, along with our daughters and brought them to the hospital. By 9:00 am, we were celebrating Christmas on the floor of Mark’s hospital room. I was praying, begging God, “Please don’t let this be our last Christmas”. Shortly after the presents were opened, Mark’s best friend came to pick up the girls. We had no idea what was going to happen next and we did not want the girls to see it.

December 27th, 2009.

5:50 a.m., they came into the room to get Mark. They were taking him into surgery to remove the tumor from his brain.

December 25, 2010.

We are all smiles. The girls (ages 10 and 13) are sitting on the floor waiting for daddy to pass out their Christmas gifts piled under the tree. I am thanking God for giving us this Christmas. Mark was doing well. He had retired from the Navy in November after a 22 year career. We moved from San Diego and bought our very first home in Iowa. He was on a successful BRAF study. Things were looking up. I was thanking God.

Mark with his kids June 2011

July 14th, 2011.

10:03 p.m., four years after being diagnosed with stage III melanoma, 8 surgeries and 5 failed treatments, my husband died. Mark died at the age of 41. Mark died because of a mole.

It has been almost three years since we lost Mark. I think back to the phone call with Dr. Smith often. I had no idea. Mark had no idea. How could a stupid mole he had his entire life kill him?

I tell people about doing self-skin exams, I tell them about the ABCDE’s of melanoma. I have set up free skin cancer screenings for anyone who wants to come. I warn parents and teens about the risk involved when using tanning beds. I have gone to local schools to talk to students and staff about melanoma. I have planted trees at our local school, so the kids can play on a shaded playground.

I am still fighting melanoma.   I promised Mark I would not stop fighting.

– Molly Menard

Mark Menard

The below photo is of Molly and her daugher Sarah, taken on Saturday, May 3rd at the Steve Yates Melanoma Awareness Golf Tournament in Waterloo, Iowa. Molly and Sarah held a free skin cancer screening at the event where nearly 50 people were checked for skin cancer by two dermatologists from the University of Iowa, Dr. Amanda Tschetter and Dr. Krishna Mutgi. Keeping that fighting promise to Mark, Molly coordinates a free skin cancer screening each fall in her home town of West Branch, Iowa. This year’s screening is scheduled for Saturday, October 4th.

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Melanoma, Perspectives

I’ve Got You Under My Skin

Since May is Melanoma Awareness Month, I’ve invited others affected by melanoma to guest blog on the 7th, 14th and 21st. I’ll wrap up the Melanoma Awareness month by blogging again on the 28th. Today’s blog is written by Tom Armitage. Enjoy. 

 

Do you know how men never want to go to the doctor? No matter what! “Oh, it will go away and besides it doesn’t hurt.” Well do I have a story for you! One day I noticed a small lump on my scalp under my rapidly receding hairline. But worse than that, my wife also noticed it. Before I knew it, my family doctor was looking at the lump. He said it’s a common cyst and should be removed before it causes trouble. Well, it wasn’t a cyst but instead it was termed a “vascular mass” and sent to the lab. It was not cancerous but the margins around the mass contained some melanoma cells. Was I surprised!

After receiving a diagnosis of 4th stage melanoma, the first thing I did was to find out as much about the disease as possible. It didn’t take long to learn that it wasn’t a pretty picture. The second thing I did was to realize that cancer may change my life at some point but I wasn’t going to change my life because of cancer. So, I didn’t. I continued to do everything that I would normally do. After all, there is nothing on my bucket list. No need to skydive, sail the 7 seas, or run with the bulls in Pamplona.

But, there I was, 64 years old and wondering what the hell was going to happen next. After all, I had no symptoms and the melanoma was discovered by accident. Then I met Mo. He kept telling me “this is not a freight train” as we explored my options and I became more anxious about doing something, anything to start a treatment. Another test? What was he waiting for? I began to realize that I was on a journey—–through a jungle and Mo was my guide. Although I knew Mo was an oncologist he was more like a mentor who was priming me to succeed. Mo made me feel that we were a team. We decided to try a new drug called Ipilimumab.

Here I am, 67 years old, minus one pituitary gland, and cancer free. I’ve graduated to a PET scan every 6 months. So as far as I am concerned, I have no worries until the night before my next scan. I go through long periods of time not thinking of my diagnosis. Am I afraid it will come back? Not really, I know it will. I have a healthy respect for my situation but until it changes, I will follow the good advice of a friend that I walk with three mornings a week. Right Foot!…..Left Foot!……Breathe!…..Repeat!

So, what’s with the positive attitude? In my early thirties, I was pretty sure I was going to die. No, seriously I thought I was going to die. It was traumatic. There was no medical evidence to support my contention and anyone who could dispel it was no longer living. When I was three, my father died at age 38, his father at 36, and both my namesake uncles at 28 and 34. Was I next? I grew up without a father and so did my father. My biggest worry was that my two young children would have this same experience. After I passed 38, I felt thankful and never looked back.

Thirty years ago I realized that every day was a gift and after being diagnosed with melanoma, I am continuing to enjoy each day as it occurs. I am thankful for all my blessings and Doctor Mo.

-Tom Armitage

Tom Armitage

 

 

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Connections, Melanoma

May is Melanoma Awareness Month

Dear Friends,

May 1st kicks off Melanoma Awareness Month. Guest bloggers will take over my blog on May 7th, 14th and 21st and share their stories of melanoma. I will wrap up Melanoma Awareness Month by blogging on May 28th. Monday, May 5th is Melanoma Monday and the American Academy of Dermatology asks that we all wear black to bring awareness of this disease. Take a photo of yourself and upload it to my Facebook page, Melanoma Iowa, on Monday to show your support.

Stay out of trouble

Mo

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Perspectives

Is It a Choice?

The research coordinator sat next to me and said “his insurance will only approve a phase 3 or phase 4 trial, and while this trial you are offering him is a phase 3 they have denied it anyway!” Frustrated she also added “we are in the process of appealing this, but it could take up to 30 days.” I stared into the cubicle I was sitting in. I never check which insurance company a patient has nor do I understand the “what is allowed or what is not.” I had met my patient a week ago and I counseled him with options that I felt would best serve his treatment and his goals. How do I explain that his recommended treatment is off -limits due to insurance, and we need to consider an alternative? Why should I? I honestly did not want to.

I have practiced medicine in many different systems. In Jordan, recommendations for treatment are often coupled with a price tag. It is one of the big reasons why I do not practice there, and feel that a health care system does not need to discriminate in care based on a patient’s financial abilities. I have blogged about this hindrance previously and I do this again as I feel passionate about patient care and where it may be heading.

In the modern health system of seeing patients in 20 min, we have to discuss an incredibly difficult and complex disease in the matter of minutes with our patients. The industry of medicine has truly become too demanding and very bulky. From a physician perspective there is a need to understand the exciting number of breakthroughs in cancer research at the same time present unbiased informed consent to patients explaining treatment options and offering a true reflection of what knowledge is out there. This is coupled with an explosion of technology, electronic medical records systems, the almost immediate availability of information, test results and expectations. The physician now faces the dilemma of appealing denied insurance claims to render his decision for the selected treatment “allowable”.

Patient’s choices are limited by which insurance they belong to which clinical trials are available to them for cancer care. It’s the art of medicine to help the patient navigate such hard choices and ensure a good decision is made. I am a believer that everyone should have health insurance, however in our system it appears that some are better than others reminding me of the novel “Animal Farm.”

My patient looked at me and said, “I want what you think is best for me in the treatments you have outlined for me.” This is a huge responsibility to walk a patient through a network of decisions influenced by the many changes taking place around us, yet we are being asked to do this in a very short period of time influenced by the politics of insurance companies. So I am left with a simple question today as I blog, is it a choice?

Mo

 

 

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Perspectives

Blog Holiday!

Dear friends,

I have enjoyed writing to you every week on my blog. We have had a few guest bloggers as well and the feedback from all of you has been great. This week I will not be blogging and will start doing that every 2 weeks with an occasional guest blogger jumping in on a break. Some of my patients would say “ Mo , you just needed a blog holiday” and I guess I am finally listening.

Take Care

Mo

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Melanoma and Sarcoma, Perspectives

“Stay out of trouble”

“Nice to meet you Dr. Mayhem” he said mispronouncing my last name, but he had me smiling. “A pleasure to meet you too” I replied to my newly formed friend. In the background of the clinic, the laughter this word created reaches out to my depths and pulls out something I have longed to share. If you have seen me in clinic many times, my closing statement to each of my patient is “stay out of trouble.” It’s like my signature. I want to blog about what that actually means and why I say it.

I will start by asking “the” difficult question. One you all know but maybe have never dared to ask. When a patient first gets diagnosed with cancer, be it melanoma or sarcoma or any other type, where do you think their mind goes? In my practice I have watched as my patients go to thoughts of death first. This is exceptionally vivid when I am the one who introduces this particular thought to them.  There is an awkward silence that usually follows. It is not awkward for me as I am the one being silent. This is broken on many occasions by a deep sadness, an overwhelming emotion that fills tears in everyone’s eyes who are watching. I create the space in time to accommodate and acknowledge this feeling. Silence has an end, it is not never-ending. My patients get into “trouble” trying to understand their cancer, their disease, their plan and how it is to be executed.  They are never left to do this alone. I will admit that initially they are lead to believe they are.

Truth has a responsibility of being clear, sharp and honest. Telling a patient that they have a terminal cancer is no easy task. Yet I do that daily, begging the question from the observers of “how do you do this?”  To answer this statement of “stay out of trouble”, when asked to do the same, I end up saying “no I will not” because I am at the heart of it.  I have marveled at the psychology of the irrational fear of death that drives us towards a helplessness that cripples us to give up. I journey deep into these “hot waters” pulling my patients out of an irreversible outcome. No one does it better than the person on this journey and I end up learning so much from each of my friends as they face this certainty. So I walk beside them and find myself saying simply “stay out of trouble”.

I usually say it as I leave the room; I point and stare deep into my friend’s eyes as I say it. I mean it; it is a real, reflex almost. I fought hard to get them out of the tribulation that they are being faced with. I want them to live fully and embrace what moments they have left. As important, I also point at those around them reminding them of the diamond that sits amongst them, that soon they may be forced to part with.

Stay out of trouble my friends.

Mo

 

 

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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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Melanoma, Patient Care, Perspectives

7 Days of Jim

It was my first day to meet Jim. He walked in and sat down, a well-appearing middle-aged man. I introduced myself and said I was just going to look at his scan and I would be back to discuss what I saw. In the back room, where patients sometimes wonder what we do I examined his CT-scan. His tumor had wrapped itself around his windpipes. I made a few calls and then walked back into the room and sat in front of Jim. He barely knew me. I had a solemn stare as I walked him through the scan and my fears that this might occlude his breathing pipe soon. I explained in detail that I would like a specialist to perform a procedure to look down his pipe to see if they could give me a better assessment. I also shared that they could do this today. With a trusting tone he agreed to have the procedure done on the same day. Until today I wonder why?

To do this procedure, he had to be placed on a ventilator –a breathing machine. I got a strange call from my specialist. “The procedure went well”, but he explained to me that they could “not remove Jim from the breathing tube”. They were worried if they did this that his lung may collapse, and he was being admitted to the intensive care unit (ICU) on a ventilator. I confess this is not the outcome I wanted. This patient came in walking and now was on a breathing machine in the ICU. I finished my clinic and made my way up to the unit to see how he was doing and to think up a plan. This is when I was met with all his family. “Get out of this one” my mind said. It was surreal. Many eyes were staring, asking me questions, wondering who I was and trying to understand why their loved one got instantly sicker after he had met with a doctor for the first time in the clinic.

I was going nowhere; I pulled up a chair, and sat down. I talked to Jim’s family, honestly and with great care and empathy I chose my words. Jim stayed in the ICU for 7 days. During these 7 days, I watched his family’s emotions, their courage, their faith, and their gratitude. As he lay there sedated and intubated, his family made difficult choices for him. Through this tumultuous period we bonded. With their help the tumor shrank with the treatment I had thought would be best. When Jim woke up, he could not remember any of it. His voice was hoarse, he did not know me, did not recall a thing that he went through, could not understand the days that had gone. It was ironic how the diagnosis, the ICU, the procedure and the waiting was an affair of his family and not him.

I have seen many things in my life, but the miracle of a family is something I appreciated that day.  I believe the days that Jim could not remember were long and memorable by those who are alive today. To Jim it was a mirage that we could only tell him about never felt or seen, for the family and I it was how we got to know each other.

Mo

 

 

 

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Melanoma, Perspectives

Joy

Three years ago this week, my brother, sister and I lost our Dad, Jim White. My Mom lost the love of her life. My boys and my sister’s kids lost their grandpa, my uncle lost his little brother…former ball players lost their favorite ex-coach, and a community lost a friend and local business man. He was taken from us by melanoma.

Jim White's Family

I do not pretend to understand what it is like to fight cancer. I have nothing but admiration for those that fight cancer so bravely all with passionate determination and hope in their hearts.

My family experienced what seemingly so many have experienced or are experiencing this very moment, losing a loved one to cancer. It sucks. It is hard. At times I become selfish, and personally feel that memories that had yet to be created were taken from me and my family. My faith and heart know that he is in a better place, yet it is hard for those left behind when amazing people leave us to soon.

Rather than dwelling on the moments that he is missing, it seems to be better to channel that energy into passion.  That passion to pick up the fight where he and so many others left off.

I feel I can speak for my Dad’s family and close friends when I say there were so many lessons we all learned being there with him as he battled melanoma. I feel compelled to share them in hope that other families might also look for all the positive moments, even when there are days where they do not necessarily shine through.

Here are three that stand out with a clarity that is still as sharp as it was 4 years ago when his battle began:

Live in the Moment – As hard as it was spending so much time in ICU, the hospital stays, and towards the end, at Jim’s home under the care of Hospice…those times gave us amazing memories, due to us being together as a family. Uncles, Aunts, brothers, sisters, cousins, nephews, nieces,  mother-in-laws, father-in-laws, close friends…we all were focused not on the daily tasks of work, challenges that we face day to day, or outside conflicts, but rather on LIFE. His LIFE. Our LIFE as ONE Family, and ONE community, all supporting my Dad’s one goal. To LIVE. And living only in that moment, striving to help him achieve that ONE goal, was fulfilling and beautiful. Life matters most when you are fighting for just 1 extra week, day, or minute. The Future literally becomes the Present, and the Past is a gift.

Faith – Faith in God. Faith in the human spirit, Faith in Dr. Mo, and his team. Faith that all this suffering has meaning. Faith in each other and Faith in what it means to fight one’s final battle with dignity and integrity.

And lastly:

JOY – That is a word I honestly, never gave much thought to prior to 2010 when my Dad was diagnosed with Recurrent Melanoma. But the word has not escaped me since he passed in 2011.

Almost 600 people attended my father’s visitation. I bet 500 of them used the word Joy or Joyful, when describing my father. And as hard as it was, we listened intently to each one of them, absorbing the power of that word that described how my Father’s Joy made a difference in so many people’s life.

Photo of Jim from Vietnam

As human beings we have great days, rough days, and everything in between. But I saw Joy in my Dad as he fought this terrible disease for a year. He honestly never complained. And I saw Joy in others at the Holden Cancer Center at the U of I as they fought their own battles. Whether they were 63 years of age like my Dad or 5 years old as some of those kids were when I walked through the Children’s Cancer wing.  The Joy shinned through them.

Do not overlook the power and difference you can make by extending Joy to others as we reside on this planet.

I am honored to be able to share in this time slot that is typically filled by such an eloquent writer and amazing person such as Dr. Mo. Wednesday is the day that my Dad would write his own blog through Care Pages, sharing his Joy of life to hundreds, giving them a little extra inspiration for their week. Now that same WED is the day I look forward to reading the brilliant and intimate words of a man who genuinely cares about the human spirit and his patients. Those whose battles have ended and those still fighting seem to feed him energy to press forward and keep fighting the good fight. With JOY in his heart.

I would like to end on an excerpt from one of Jim’s Care Page entries:

“Looking back to March 28th when I was released from UI Hospital after a 13 day stay (7 in ICU) I remember making some short term/intermediate goals…*attend Easter Mass w/ my family *celebrate grand-daughter Hailey’s birth *participate in grandson’s (Jaden, Tyler, and Dylan) birthdays in April, May and June *traditional Father’s Day golf outing and cookout *4th of July (special to me)…except for the birth of Hailey these occasions are nothing new, but they’ve never meant more to me. Guess what I’m trying to say is this month I’ll be 63 yrs old, but I’ve learned how to live, enjoy and appreciate life to its fullest just in the last 6 months.”

Thanks for taking the time to peak into a bit of Jim and his family’s story. Writing it was somewhat therapeutic for me. If you have lost a loved one to cancer, keep telling their stories. As cancer is just a small chapter in their amazing book of how to live life to the fullest.

-Jay White

Follow The Jim White Foundation on Facebook.

 

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Patient Care, Perspectives

Do You Read Cancer?

My patient sat across from me and said “You are the expert.” My mind began a long walk on a desert land, nothing as far as the eye could see. I reached a tree and sat down for a little to rest. Then stood up and continued walking. A nomad with a keen eye in the desert searching for water and life, finding answers as he continues his journey. I wonder how much my patients actually think I know about cancer. The way I see it, it’s the time I sat in the tree to rest, where the knowledge I have helps them navigate difficult choices. Science is the compass I hold, like the North Star shedding light giving direction to where I go next, this decision I make under the tree.

Here he was faced with his cancer returning it was his second visit and it was a short interval between the time I had told him and his return to see me. I gave him time since I broke the news in such a short time. My style is to stagger the information and give patients some time to receive the news, absorb the facts, grieve their health, rest, pick themselves up, and come back to fight. This is where I sit in the shade of the tree and conjure up a plan focused on where I am going to head out next. My thoughts questioned, “I am the expert?” But the desert is vast.

Science helps me read cancer. How do you explain that to the mind that eagerly awaits your decision to help them? So I tried, I asked him to imagine an alien land where you met the natives and you could not speak the language and you are trying to make sense of what they are saying to you. He looked at me and said “you understand this more than I do”. I did have a plan for how to treat him; I always have something I can offer to patients who pick themselves up. Some patients interpret this as me giving them hope. I, on the other hand, see this as their success in how they refused to fail. Like the nomad who looks up at the stars and knows where he will go next, I use what I know to guide them across the dangers of the terrain that they are being forced to navigate.

Fear is very real to patients. I saw that today in his eyes. What’s next? What’s up your sleeve Mo? I take refuge in the shade of the tree that will offer a moment to contemplate. The uncertainty of it all, yet the nomad finds his way to an oasis almost every time. Armed with his knowledge of the stars and the understanding of the hazards of the desert, using his patience, his wisdom and his passion he leaves the shade of the tree, pushing forward on his journey to find that which will quench his thirst. A powerful drive coupled to an amazing will of a patient who stands up when the cancer thinks it has succeeded.

Mo

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Melanoma, Patient Care, Perspectives

Tad

He was very young and it had recurred in his brain. Tad was playing on his computer when I walked into the room. He looked healthy, his eyes bright and beaming with intelligence. I sat across from him in the old cancer center and he asked me question after question. I connected with him instantly and we talked. He always came alone, never accompanied by anyone. I respected his independence. He looked things up on the internet brought them to my attention. My melanoma program was young then and new therapies were still not available. It was hard to tell him about death, to share with him the lack of treatments available and to tell about how clinical trials work. He took it all in and shared with me that he would like to try something. He participated in a trial only offered here in Iowa. He became an instant hero. I shared with him the limitations of research, the problems we faced and how science alone is the best way to fight cancers that have no good treatments.  We discussed many thoughts and theories and he engaged with me as he went through his treatments. His tumors grew despite the treatment in his brain. I look back at the day I told him the news and he was wheeled off to surgery to have the tumors removed.

It had been 2 years without a word. I knew he was out there. He had not come back to see me nor visited. I thought about him a lot and what he was up to. I heard small snippets of his life. Tad did not want to get any more treatment and was living it up. I missed him and thought about his bravery and how his disease was just an obstacle that had crippled his life. I formed my own convictions about what and how he was living. Suddenly out of nowhere he came to see me. He was not the same, he lay there. He was crippled with his disease, his speech slurred, and he had a hard time articulating his words. I walked into the room, dazed that this man had made the journey after such a long time of silence to say goodbye. I sat down next to him, held his hand and began to cry. It is a rare moment for me to cry with my patients. He wanted me to know that he was content with everything, that he was comfortable and had lived his life fully. I was stunned at his outgoing attitude despite all the difficulties this disease had placed in front of him. He told me its ok, and he just wanted to say goodbye. I cannot find the words to express to you how that made me feel and I write this blog with words that cannot describe my sentiment around him that day.

Tad’s impact went further than anything I could imagine. One month after he passed, friends of his gathered at a bar and collected donations to help my growing program. His parents whom I had met on his last visit came to see me to share with me the event that took place. I am humbled by the efforts of all those who have helped create snowballs that become avalanches that remove uncertainty from the knowledge of this cancer. Helping us find ways to wipe it out. Tad resonates deeply in my heart and he showed me that “Every man dies, but not every man lives” his most famous quote from William Wallace. Tad died, but he lives in the Iowa Melanoma program, moving the science forward in ways I hope he would be proud of. Each year dedicated friends and family gather round and make sure that Tad’s legacy remains that he was a man who decided to live his life despite all the odds.

Tad, I bow deep and honor your courage. You are one of my true heroes. Thank you.

Mo

On Monday, March 3rd, I was a guest on the Paula Sands Live show in the Quad Cities, talking about Tips for Tad. Watch here: http://bit.ly/NUlU5P

Mo at Paula Sands Live

Mo tips for tad shirt

Tad Flyer

 

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Perspectives

Unsolicited

I did not have my regular clinic today. I was in Ottumwa yesterday as part of a mini-medical school bringing the knowledge of melanoma and cancer to the public. We were supposed to go to Creston this morning but that was cancelled so I had a day to play catch up. I went to work in jeans, sat in front my computer and began checking the usual things, my inboxes in the electronic medical record and my email. Our emails are plagued with spam, despite all the mechanisms that we have in place to stop what we do not want to come to our emails, we are bombarded with unwanted things. I spend more time deleting emails than I do reading them.

Cancer finds ways to prevent itself from being deleted. We have so many mechanisms in our bodies that act to prevent cancer from forming. Despite these, cancer manages to trick the system into accepting it as part of the body. Like Spam, cancer is real and disrupts the organized tissue that is trying to maintain how cells behave in a tight environment. As I was deleting what I felt unneeded I remembered that our body goes through a similar daily process of removing cells that have a tendency to cancerous formation and this is an active ongoing process. It requires energy. I humanized the feeling that this is tiring, annoying and maybe the body as myself becomes lazy or just bored with getting rid of all this. I thought out loud, how can I minimize this with less effort from myself!

Perhaps instead of attacking a cancer that has established itself, one should work on enhancing the mechanisms that remove cancer formation from the very beginning. This would be like redirecting spam away from my viable inbox and save me from deleting them myself. Research in understanding these mechanisms are difficult but we are making exciting progress in immunotherapy. I reflected on the talk I gave to the audience that listened. Fascinated that I talked to ages that spanned 12 years to 80. Their questions penetrating and deep, catching me off guard. It was refreshing to know what they needed to know, what myths to dispel, and what unneeded information to block. It was an active interaction. My knowledge helped them remove spam from theirs and fortified a more secure picture of what cancer really is.

Mo

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Patient Care, Perspectives

Interception

The little interactions with my patients are the highlights of my clinic. They help me in knowing them as people, understanding the pattern of disease globally and managing the side-effects that they could face. More importantly it is getting to know how they view their disease. Many of the therapies that we as oncologists give are as toxic and cause symptoms that can mimic the cancer coming back. It is hard to separate sometimes what is the cause of the complaint that people present with, is it the cancer, or the chemo? It takes time, a skill and patience. Providing the right atmosphere for the patient to talk is crucial for them to share freely their complaints. Providing a supportive and encouraging state, makes it raw and uncut but always honest.

Today one of my patients inferred that his disease was not responding to the chemotherapy that I was giving him. I listened, and let him narrate what he was feeling. He was feeling weak and had lost weight. I asked him some questions and he began to describe his symptoms. He described a high and low, like being on a roller coaster.  What appeared to me was a difference in the interpretation of his perception of what might be happening. I guided and steered him away from making assumptions, allowing him to tell me exactly what he was feeling. We juxtaposed his perceptions with what we both knew objectively and we worked together to a common ground where things were clearer.

I intercepted. I gave him my opinion that I felt what he was describing seemed more like the symptoms I would expect from his chemotherapy. I watched his face change expression. A relief came over him. “I trust you” he said “So you think I should keep going with the therapy?” Nothing had changed, it’s important to do the evaluation of the disease at the right time to make the correct deduction on whether the therapy was truly helping him. I stood by my recommendation, explaining carefully that it is hard sometimes to separate chemotherapy toxicity from cancer symptoms. His faith in the therapy seemed renewed and I said “it’s best not to cross the bridge before getting to it first”.

Mo

 

 

 

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Patient Care, Perspectives

Reconciliation

I shared an email I received from a patient’s wife in clinic today. That patient had passed away a few years back. We were all sitting in clinic going about our daily business. The email asked me to say “hi” to everyone. I had forgotten about it but then someone reminded me of him. So I pulled it out and I shared it out loud.  It tugged at us and told us “you are always in our hearts”. As I was reading I was unaware that Wendee my nurse had started to cry, she sobbed “don’t they know that they never leave us too?”. Everyone around me was silent, and I said “I think they do know”. The email was gracious, magnificent if you asked me. She was telling me that she loved my blog and that she felt her husband beside her as she read it, that his children, when they grew older, would read it too. She thanked me for the years I gave them together and how she held us in her heart, of how we are always on her mind.

I take the bus home on occasions. It was a strange ride for me today. I could not shake the feeling of this email, it stayed with me. I had read this alone and it had a different effect. It was Wendee’s words that were echoing in the hollows of my mind. I stared at the advertisements that were plastered on the bus. One said in bold letters “have you ever saved a life?” My thoughts floated away, I remembered a younger version of myself talking to this man as a brother and confidant. I remembered our bond, our relationship. Paul Coelho a Brazilian lyricist says “When a person really desires something, the entire universe conspires to help that person to realize his dream.” This was this man to me. He was a pragmatic man that understood his fate, but he realized a dream that I could not possibly understand. Here was his wife thanking me for years I gave. Yet I felt I lost the battle. The truth is no I did not “save” a life.

The bus stops close to my home but a walk away. I crunched through the cold, walking to my house. Thoughts and images of my interaction with him. I miss my friend. What a man he was. A man of my age, his wife still thankful, still appreciative, still supportive. “Do they know they never leave us too?” And I reconciled that disconnect that I have. I felt I failed, and she felt I won. Simple exchanges from one human to the next make a difference far greater than one can expect. I really appreciate the kindness, in helping me feel a loss is a victory nonetheless. 

Thank you.

Mo

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Patient Care, Perspectives

Inconvenience

Last night it seems one of the pipes connecting our water heater froze in our home. What an inconvenience! Stranded I was unable to go to work this morning. Commitments needed to be canceled, meetings moved and rescheduled, I disappointed many but this is important, we have no water in the house and I needed to stay home and wait for someone who understands pipes to come and tell me what is going on. I needed a specialist who could help me evaluate and manage my problem. But I had to change my plans and my day is not going as I had wanted it to.

When my patients are on chemotherapy (chemo), they are at the mercy of the cancer, the side-effects, their blood counts and the specialist. What I am feeling now is an understatement to how it must feel for them to be stranded with a situation that they have no control over. My patients make plans and have lives outside of their cancer that they really do not want to interrupt to be hospitalized and receive chemo. When they come all prepared to be admitted for their chemo, sometimes they do not get what they want. I have many a times delayed a chemo regimen and offset plans that they had. I see how frustrated they become and hear them say “but this means I am going to miss the wedding now”.  This is an aspect of my job I do not enjoy. Most patients receiving chemo are healthy and live active lives in between cycles, and I have stressed that they don’t let the cancer rule their lives, and that they should plan and we will work around their plans. That is easier said than done. Cancer interferes, ruining moments and events and it does not have a schedule.

In delivering chemotherapy to a patient an oncologist will try to stay on track but what patients don’t know is we sometimes have “wiggle room” as I like to call it. We can add a day or subtract a day to get things to accommodate some plans that my patients have. So when they come back for an unanticipated admission or are delayed for things beyond their control I do enjoy giving back “wiggling” their plans back into their lives. The plumber said he would be here at 9am but showed up at 10:30am. The weather is bad today, the roads slick, and cars in ditches, but he came through. He has taken up half my day, but he came, and now the hot water is back. I do strive to ensure that all my patients driving through their bad storms get to where they need to in the end. While the outcome can be as bright as simply fixing a problem to help a patient reach a goal that they wanted – it does make for a better day.

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

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Patient Care, Perspectives

Fragile

It was a slow day in clinic. Time was plentiful. Patients trickled in to be seen. I watched my practice in slow motion. I helped a patient make a better decision about their care. I contemplated on how fragile our health really is; on how symptoms dominate our thoughts and how having good health truly makes a difference to how we live our life. 

Cancer can be very silent in our bodies with vague unnoticed symptoms. It eats at our vitality and makes us weaker though we may not feel it until it is too late. It attacks us physically, emotionally and socially. It is difficult to convince a patient who feels well to accept a therapy that itself would make them feel worse. It’s a very delicate state to explain to a patient their vulnerability and how this disease could end their lives if they do not accept the therapy at hand. I find it frightening at the number of choices there are to navigate and how little time we have to explain rationally to our patients the best options they have.

What happens when the therapy we have to offer really does not have an impact on their lives or wellbeing? Should it be offered? How do you explain with all the progress that is hyped in the media that science for this one patient lags in finding a treatment that helps them get through their ordeal?

Today I felt I had that time, because things happened slowly. It was a refreshing look at care where as things moved slowly it felt like I could see more detail and focus more on my patient. It was like watching the replay of a touchdown.  I have always felt that healing is a process that needs time on its side.

Each patient as an individual needs to be handled with the utmost care, like they were a vase that could easily break. Perhaps that is how it should always be.

 Mo

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Melanoma, Perspectives

Eclipse

It is hidden, and it is beautiful. It is like a veil that conceals but it is a phenomenon worth watching. Over time we have come to understand how and what it is. Does this knowledge subtract from its beauty when we know the truth of what actually happens? I feel that it adds a dimension of appreciation that is not easy to explain.  My team and I visited a scientist lab that transported me to new dimension a place that is foreign, different and exciting.

We walked through the halls like a maze to a room. Sometimes it feels like I’m in a spaceship walking through the different passages. What I saw was new and strange. Where were the rules? Cancer has no boundaries. Ok let me stretch my mind around what I am seeing. Can I see what I am not seeing?  Cancer is constantly redefining the boundaries of those past ideas that attempt to limit it.

It was my first glimpse at a 3 dimensional live reconstruction of a tumor growing in a petri dish. We had grown accustomed to seeing cancer through a microscope after it had been sectioned and placed on a glass slide. This process was not 2 dimensional at all. I pushed the 3D glasses closer to my eyes as I tried to understand what it was I was looking at. Marveling at what I guess I knew all along but had not seen it to believe.

This makes sense, of course it behaves this way, how else could it have behaved? It moves, it is not static, it is alive, and it evolves. It is intelligent. Even the scientist trying to explain it was searching for how to explain its unique nature.  I left the lab thinking to myself that the world is now round it is no longer flat. Was I now convinced that I should change how I think about this process?

I do not know how to share the beauty of a process that is too fascinating to ignore, its power lies in that which we cannot see.  It is unfortunate because it involves us, humans, and makes us suffer. I look back at my clinic today and all those affected by cancer who have to face it with courage. It is in the hidden complexity, the eclipse that takes our breath away, when what is not seen is revealed. Just like the moon that shields the rays upon the sun allowing us brief moments to contemplate what an amazing natural process this truly is.

Mo

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