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 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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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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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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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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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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Connections, Melanoma and Sarcoma, Patient Care

A Good Laugh

Let’s all laugh. It’s infectious, heartwarming and welcomed. At any time during a conversation. Throw a joke, a comment that grabs attention, a statement that has everyone doing the same action. Laughing with our hearts together as one. Today I was pleasantly taken by surprise. I walked into a room with the most delightful patient. She was on fire. Exploding with one comment after another like she was doing a standup comedy or as she said it “I’d prefer to sit down”. It was my turn to laugh. She had me reeling with laughter till I almost cried. My turn to be entertained. I loved her spirit, her joy, her courage to laugh, to face her cancer head on and to live life fully. She told me of her preparations for her holidays, of her family that was coming of the adventures she will have with cooking, food and sleeping bags.

I needed that laugh. It removes my callous nature when faced with the extremes of this disease. Like a massage removing the tense conversations after a long day. Helping me fall asleep relieved and relaxed. Yes it makes a difference to us all in the field. To be able to laugh with you about such an ordeal. For you to see that as a way to connect and share your thoughts and secrets. You amaze me. Your insecurities and our inefficiencies the food for our amusement. But you make it happen. You add the spark. You allow me to build on the fun of it. And you share with ease your feelings about how when faced with such an adversary that you laugh. I have only you to thank for that.

I love it when I was told “I’m 3 years disease free now, I am glad you have me to feel good about your day”. And I do feel good about that. That you all are out there, showing me the positives of our fight; that you exist. It’s like you better exist, how else could I be who I am? So I urge you, make fun of me, laugh with your heart, share with your smiles and come together as one. And if you really need to just give me a punch, you know the one I promise; I would never punch back. It’s my way of sharing with you the ability to overcome your greatest fear, of being left alone to deal with this disease.

You are definitely not alone. You are family, thank you for making me find laughter even in the midst of the hardest time. For that I hope you soar, high and you roll in laughs as you fight your battle against something that can never take that away from who you are.

Mo

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Melanoma and Sarcoma, Patient Care, Perspectives

Do Not Touch

Observe. Let’s say this is the decision I have to communicate to my patient. I analyze the data in front of me and come to the conclusion that the best therapy is to do nothing. To leave this patient alone and watch their disease rather than interfere. Easier said than done.  I believe this is one of the hardest decisions I have to make sometimes, because we as a society have become used to the idea of doing something. Doing nothing is just not acceptable. Why is that? Pressure from guidelines and treatment algorithms, difficulty in teaching my students who are learning the concept of observation, and exceptionally hard to explain to the patient and the caregivers.

There is an itch to treat. I compare it to an itch because it is hard to ignore.  I feel it.  It builds up inside us telling us to do something. We just can’t stand there and watch. Even when the odds are low, or the statistics are not favorable. That irresistible feeling to do something comes roaring from the inside. Where does it come from? Why do we listen to it? I ask these difficult questions because sometimes I think I should just shake my head and say no, leave it alone Mo. I think your best option is to watch. Allow the disease to declare itself, and show you what you need to do. “I am a good salesman, about to sell you a crappy car” I find myself quoting quite a lot to patients as I navigate this decision. I don’t want my patients to feel abandoned or dismissed.

I have evolved in the way I treat my patients today. When I was younger I was eager to get a treatment plan in place for a patient. I believed that it was important to have that ready to help patients fight their disease. Over time I have also seen my decision-making change. I am more observant, waiting for the right moment to intervene with a therapy. I always  hope I make the best decisions for my patients. It involves engaging the patient, the family and their goals. Slowing down and trying to let the decision be made for me by observing has proven very valuable.

To truly help you as a patient, I want to be in your shoes. So let’s reverse the roles, I am now you. Faced with a difficult disease, being bombarded with knowledge that overwhelms and intimidates.  Yes I can be that person since I am vulnerable to this disease and its effects. I self-reflect to what I hold sacred as I ask the deepest parts of me. I value my quality of life, my sense of well-being, and my vitality to those around me. I do not want to interrupt my life, I do not want to be sick or out of sorts; What would change my mind to accept a treatment, cure?  If that cannot happen, then why subject me to this treatment? What’s the goal? Doctor can you please answer me? What can you possibly offer me that may make a difference to me? Why is it necessary to put me through this? Why do I have to suffer?

Important questions that I ask as the patient and should be asked as a doctor. Can you be me for a change?  In the eyes of this doctor I seek understandings in why I have to present a treatment that may not be helpful to my patients. Perhaps the best treatment is “do not touch”……..reminiscent of the oath I took of “do no harm”.

Mo

 

 

 

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Melanoma and Sarcoma, Patient Care, Perspectives

Impact

Brace yourself. Get ready. I am about to deliver news about the status of your cancer and whether you responded to the treatment I persuaded you to try. Wait for me, I know you are anxious. Understand that I bring you the truth. Good or bad it is disbelieving. And what I say cannot change.

When looking at the statistics associated with cancer it is more likely for me to be delivering news that my patients do not want to hear but have to. I have also shared moments of triumph and victory with many patients. The impact of this news regardless of what it is, is the truth of the situation. Say it the way it is and help the patient understand. It is my experience which has proven so very valuable. Understanding mishaps and bad decisions in medicine has been a cornerstone in improving my level of the care that I provide to each patient. This is what I teach the next generation of doctors.

What impact does seeing and telling the truth about cancer have on me? Is is the seed of my understanding that grows into a tree. It offers me a chance to improve on what I have already learned and challenge myself to do better each time. I am more than me; I am an institution I teach so many that “art” of medicine. I store all the nuances that occurred that helped shape the decision I made. I draw on so many instances where I could not find a right answer, where I saw a positive outcome in others that helped me make a better decision for each individual. “Practice makes perfect” was the old idiom.

I thank my patients for making me a better physician for the next person I have to serve. We are partners in this reality and it is the truth that nourishes our growth.

Mo

 

 

 

 

 

 

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Melanoma and Sarcoma, Patient Care, Perspectives

Compass

I am always asked “what if?”  When my patients are seeking the pessimistic alternative to the situation at hand. I have also heard of patients being given ultimatums with a deadline on their time to life. I love it when they break those barriers and surpass the times “allocated”. I have not handled these questions or these situations well. I touch upon my need to provide the right answer when I am asked “what if that happens to me?” and “when will it happen to me?” My tendency is to avoid it, try not to answer it and tonight I wonder why I do that.

Our predictive power as oncologists is very limited. In 2013 I am faced with an enormous speed at which we are discovering newer more innovative therapies to help patients. I find it hard to counsel patients in the future when there is hope for cures and longevity. This is very new for me, exciting and frightening all at once.

How does it feel for my patient? Anxiety is one of the most difficult emotions to navigate. Failing to provide them with the answers they seek creates a conflict that is not readily resolved. Science needs to help us understand outcomes of how disease may manifest in an individual and how it acts. A lot of our therapies are geared towards attacking the cancer head on. Newer approaches are taking into account how we might be able to isolate different individuals based on the behavior of their bodies and discovering better predictors for response to a therapy. I would like to tell my patient “I’m recommending this therapy because you are the one who will benefit from it.” We are clearly not there, and a lot of work needs to be done to help us be better at guiding patients down the best path for the treatment of their disease.

Like a compass leading in a general direction without pointing to a specific street or alley, when asked “Well what if that does not work for me what then?” I simply say – we’ll take it day by day and cross that bridge when and if we get there.

Mo

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Connections, Melanoma and Sarcoma

Half Way There

Light when it strikes a prism splits into many colors.  We are all faced with life’s challenges that shape how we face our daily lives. How does cancer affect the mind of the person afflicted? How does cancer shape the lives of those who survive it? They are clearly not the same as when they started. They just missed death because they were forced to entertain its existence and question their mortality. They rose above the fear of loss and planted their feet firmly on the ground and walked the journey being asked of them. Many struggled, many questioned. In this journey, how do I fit in?

Besides wanting to be a garbage man I have often thought I could be a comedian. I only come alive in front of my patients. I feel the stage, the connectivity and the ability to find in them their strength, harnessing it to help them fight. How do I write to make me sound funny? To relive the moments that I connect with my patients, throwing jokes and fun statements to keep their morale up so that they can clear the hurdles that stand in their way. 

Today my patient cried and giggled. She was half way there. A treatment with a good outcome but very long nonetheless. When I walked into the room she sat hidden behind the curtain calling out that she was not crying. I could hear the choke in her voice. I pulled the curtain back and started my act.  I pulled the stool in the room and sat close reaching inside of me to find any word that would make her laugh. Comments on my beard that I was attempting to grow, on why she did not bring her cat with her and how her brother too tries to make her smile. Between tears and laughs we reformed the bond. I could see her pick herself up from falling down and saying ok I am ready for the chemotherapy. I thought when she survives this and moves on, will she remember how many laughs we had? Or would that be a forgotten memory? 

When I see my patients survive their disease, these laughs that helped them through tough times solidify a trust in me that make me believe I do make a difference. I hear it enough times and I share with you honestly and openly that I too forget. I forget their struggle, their fight.  Perhaps it is the joy of walking in and telling them that they are still disease free and that they are winners that makes me forget. I see in them a wisdom that was not there when they started, a strength that I know makes them face life differently and knowledge that they just beat cancer. 

Why would I want to remember how they struggled? When they are truly the winners.

Mo

 

 

 

 

 

 

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Melanoma and Sarcoma, Patient Care, Perspectives

Befuddled

Cancer is a crippling disease. It frustrates us. It spares no one when it presents itself to us. For those watching and those it involves. Minds struggle with it. Others find it fascinating. It can teach you everything from finding the will to fight, to understanding the human struggle with death, to elucidating all the facts about how our cells behave. I am wrestling with this frustration today, because I could not explain what was happening to my patient. It was like entering the twilight zone.

I sat opposite her staring in disbelief. A puzzle. Baffled. How could this be? I thought. It was not bad news. It was not good news. It was news that did not make logical sense. I took refuge in the words of those who taught me “treat the patient not the numbers”. There she was sitting looking absolutely great. The treatment she was getting was working for her. But her blood work spoke something different. Impossible; now I know what that word means. How could that be? I kept asking. I left the room walked to my computer, and started asking others what they thought. The more minds I could harness the better the decision I made felt. This is where the proverb of “too many cooks spoil the broth” failed. Here is where I needed as many cooks as I could find. This is how our collective, collaborative consciousness comes together to help me understand what I had not been taught yet.

Some have asked how we do it. “We” the ones who are watching this process. It’s 9:52 pm tonight and look at what has captured my mind. What has me thinking, contemplating and wondering. It’s this curiosity that cannot be destroyed. It makes me walk in places no one dares to. It gives me a depth of understanding that helps me see more about human beings and life than I could possibly explain. I try and I am stumped. So I sit and watch the sun set unable to explain how, knowing in time that someone someday will say “well the earth is just revolving around itself” and that is how the sun sets.

Mo

 

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Melanoma and Sarcoma, Patient Care, Perspectives

Stretch.

I walked into the room and I could see that the surgeon who had seen my patient before me had already relayed the bad news. The cancer was back. The weight of this news still not complete in her mind. How could it be? She had been cancer free for so long. She had battled it once, and now she is being asked to do that again. On seeing me and my somber expression, she burst into tears. The weight of the situation finally reaching her and she gave in to her emotions.

This cannot be happening. I thanked the surgeon for meticulously working out the plan for me as the patient relayed to me what she was to do. I could be a little lost in this struggle with the patient for a change. Sometimes depending on my day and where I am at I let myself be sucked in. It was that kind of day where I was just as disappointed at the appearance of the cancer that I identified with this person, where I was struggling with many things in side of me and I just could not say much to her.  

I reached out to my patient as her tears flowed before me. I told her not to worry, that we would walk beside her on this journey today. Step by step. That it was our responsibility to see her through this to let us worry for her as I tried to help ease her suffering. The easiest thing to do was give her a pain pill, and that brought her around to a better place. I have often marveled at the little things that calm us when we are stressed. The soft touch of a hand, the forgiveness from a friend or the comforting words of a caring loved one.

And she replied “I know you will Mo.”

With the faith she had in me, and the passion in her eyes to live, we began our battle.

Mo

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Melanoma and Sarcoma, Patient Care, Perspectives

Readers Asked.

Instead of doing my usual blog post this week, I thought I’d change things up by answering some reader questions that have come through Melanoma Iowa (Facebook), Sarcoma Iowa (Facebook), @MelanomaIowa@SarcomaIowa and my LinkedIn page. A new page will be added to my blog called “Readers Asked” that will include your questions and my answers. Here’s the first of many more “Readers Asked” blog posts.

Readers Asked:

How did you become interested in treating cancers, specifically melanoma and sarcoma? Why the focus on these two cancers?

I decided to be a doctor at the age of 12. It was a personal experience for me that started after I had gotten stitches from falling down. During my medical schooling I was inspired by hematology the study of blood disorders and became fascinated with the cellular make up of this viscous substance. My curiosity of blood drove me to a career in cancer. During my 3-years of lab work I was asked to do sarcoma as it was the clinic that people feared. It opened my eyes to a whole new world that I found mirrored what I was seeing in the laboratory. Blood and sarcomas came from the same stem cell: mesenchymal stem cells. I would say sarcoma became more attractive as it encompassed such a variety of different types (150+ subtypes).

Why melanoma? The science behind it is riveting, it is smart and relentless; it grew on me and has made me very motivated to “figure it out”.

How do you have the energy to keep up with the emotions and science that an oncologist has to endure?

I think I am very passionate about what I see in cancer and its abilities scientifically. It’s the first cell to cheat death. The science is maddening and absolutely beautiful. My patients make me “bounce” and because of that I have grown more compassionate and it helps me endure.

Have you ever wanted to give up your job and find a more peaceful life without the stress of being a doctor that deals with cancer and all of the terrible outcomes that come with it?

Absolutely. Many times. My wife would say I am “attention-seeking” when I tell her I wish I was a garbage man, I really do. It’s a noble job that helps humanity clean up its mess but a shower fixes everything at the end of the day and I do not carry so much in my heart. What has transpired is I have discovered that because of what I know now I have a responsibility to help those around me, it is hard for me to turn my back on all the knowledge I have acquired and my ability to deliver excellent care.

How do you find work-life balance? What’s a day in your life?

Ah yes, this one perhaps I will blog about – thanks for asking this. Not easy. I do thank my wife for being ground zero to come home to. It’s why perhaps I married a psychiatrist. 

Can you give any ideas or suggestions on how the families of those with Melanoma can help support and say the right things to their loved ones fighting this disease?

I have learned that the best ideas come from you. Those in the battle, if only doctors would take the time to listen to their patients’ struggles. You are in the best position to offer the advice for other families who can learn from what your own experience has taught you. I often connect patients together to let them talk to each other. I really do not know what chemotherapy feels like or what a side-effect is. I counsel then connect. Tell me of your experience; it likely was the right one for the person you helped in their battle against this disease.

Do you have something you want to ask me? Email my assistant at julianna-kennedy@uiowa.edu with your question and I’ll add it to my next “Readers Asked” blog post.

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Melanoma and Sarcoma, Patient Care, Perspectives

Orphaned.

Everyone in the room is quiet.  I feel like the old man leaning forward looking through my glasses understanding the situation but not fully. As an observer  I have seen it, can describe it but I am not experiencing it myself. No one in the room can appreciate that struggle. Three situations have made me think differently this week about cancer and what I do.  So lets navigate the spheres of care. The psychological, the spiritual, and the physical realms that humans use to perceive their surroundings.

I walk into a room and pull up a chair. I feel separated from my patient because of a new unfortunate event. I start to talk. The power of words, trying to reconnect and asking politely to let me back into their struggle. My patient said to me “Mo I can handle the pain but not the emotions of this struggle”. I acknowledge this. I do not underestimate it. Anxiety and depression makes a patient alone as if  orphaned by their diagnosis struggling at their core to make sense of things. The psychological scramble.

My patient sits across from me, my last one for the day I think to myself, going home soon, the day is done. Then out of the blue as I describe the cancer, I hear the words “Mo you talk about cancer very  spiritually.” Revelation. Taboo, should not talk to this person about this right now, no religion allowed. That’s the training. My indoctrination. But honest that was one of the best conversations I have ever had with someone with this disease.

Challenged. My patient stares at me but does not understand. Waves at me and smiles. That innocent oblivious smile. Someone else is making this decision for them. They are in pain and the people around perceive the situation but are unable to communicate it truly and fully. How can this paradox exist you might think? In a challenged intellect perhaps where explaining the physical does not help, words are of no use and an orphan appears.

Three unique situations. Each one with no real guidance on how to approach them. Am I the pioneer then? Don’t want to be. But clearly we have to start thinking of this disease as different and evolve more holistic approaches to help those who it encompasses.  Perhaps we have to explore it in places we dared not go before. Like orphans exploring parenthood for the first time.

Mo

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Melanoma and Sarcoma, Patient Care, Perspectives

How?

“You got me this far” he told me. And then making it more difficult “I trust you” he added. Perhaps these should be easy words to hear and I should be proud that I was able to do something and be commended. But it’s the other words that linger “I trust you” he repeated. As I build my relationship with patients I become part of their successes, goals and their life. I am someone that they know, have shared their hardships and deepest thoughts. I am told that it is best to have barriers and not to get involved with them. I am told that I should find ways to separate me from them.

How?

To me this responsibility, this trust is crushing. It generally sends me reeling trying to make sense of the inevitability. Perhaps now I understand the spouse and her tears. How do I comfort? With my knowledge that has failed? With my compassion that I disguise?

But it does not end there; there is a question that I have loathed. “How long do I have?”

Is there a stamp with an expiry date? Perhaps I missed it in my examinations. That is what I say out loud, angrily perhaps? Do you say you did not climb Everest when you got only half way? When you stood at the bottom of the mountain and your first words were “I cannot do this?” Now that you are half way, what should I say about the journey so far? What about the goals we reached the times we shared? Just because I could not get you to the top what should I do? That is why my patients are amazing. It’s the first statement “you got me this far” that makes me heal.

It reverberates deeply in my mind. What strikes me down to my core beyond words that I feel do not understand.

How do I say goodbye?

Mo

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Melanoma and Sarcoma, Patient Care, Perspectives

Firecrackers.

Firecrackers. I am talking about the small ones, that make the loudest noise. You know the ones, you light the fuse and then “BAM”. They are loud. Startling in fact. Pleasing. Frightening. As a child I use to love to startle people. I do the same now but I call it illumination. It is possibly how I teach those all around me. So as your read this make sure you imagine little sparkles of exploding energy with shrieks and cries of those who are startled.

Raw is the emotion of a patient with cancer. Most dive into sadness. But some into rage. Exploding with questions and a need for answers. A demand for the whys? You can almost hear them. Listen……..

When I counsel a patient I draw from my own experience. If a fiery 19 year old comes in to talk to me, I engage in the most rigorous discussions. I can feel the 19 year old in me raging against the diagnosis, battling to be free and I feed into that. I look at the person in front of me and I say in my heart- don’t change. You are so beautiful, and thank you for sharing it as it is. I think they just do not want to accept the reality around them. They want to fight.  And they want me to erupt against this beast that is attacking them.

Do we not all do this in seeking our independence and freedom from many things around us? Is the usual passage of human beings to be accepting and tolerant of their surroundings? I envy those who stand and say “no, this is not happening to me”. I look back at my life and say, I’m glad I said no to this or that. When I walk I snap my fingers pretty loudly because it helps me think. I find comfort in this sound because it reminds me to forgive anything my patients says to me when they are angry. Perhaps in some way I am forgiving my rebellious self.

So when you hear me in the halls snapping away, know that I carry in me all the firecrackers that said no to cancer. Like pins and needles they illuminate the way. Poke away my friends.

Mo

Midwest Sarcoma Trials Partnership

Midwest Sarcoma Trials Partnership

Thanks to all of the firecrackers that exist. This group (above) came together in March of 2013 and became the Midwest Sarcoma Trials Partnership (MSTP).

MSTP

MSTP

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Melanoma and Sarcoma

Cage.

It’s about a mile walk from my clinic to my office. A small part of that walk is outside. Grey was the sky, a cold wind penetrated my shirt but not enough for a jacket I thought. A light drizzle of rain. I guess this is the “Ambience” of this blog. I sighed deeply as I walked, the conversation of the day speaking inside me. I could feel each step, each bone in my body ached. And I walked distracted.

“I am sorry but your insurance will not accept me treating you on this clinical trial.”

Shell Shocked.

I did not go into medicine to be forbidden to treat someone with what I felt would be the best option for them. I imagined myself a rare bird stuck in a cage realizing the boundaries of the system that I existed in.  My wings unable to soar. My perceived freedom now defined by outward forces beyond my control. I felt the bars close in and force my decisions. A slave to the system that I have now discovered is not  easy to navigate. “This is all I have to treat you with”.  I did not even want to be in the room anymore as I spoke to this human. Where did my compassion go?  I longed for the freedom to decide the best treatment. I wanted to soar and my anger rattled me.  I flew into the bars wanting them to bend. I felt the imposition of the system. Where are the tools to help my patient today?  This is coming from someone who does not take “no” lightly.

I walked to my office, and talked to my boss. An incredible man to say the least. He let me talk. Like a cushion he absorbed this shock. This is not the first time that this has happened.

I have always liked the political cartoons of the past. They speak volumes in pictures. Intelligently portraying the issues of the time. I sat and read some of the “Far Side” cartoons on my couch. Humor a mature psychological defense mechanism like an old teacher showing the way.

Here is my picture for you- “Imagine”:

That despite this cage; this bird today sang.

I still found a way to deliver my care.

Mo

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Melanoma and Sarcoma

The Teacher.

Elated. Content. And thankful. Today was a good day. I walked in to a clinic room and I asked “so what do you do for a living?” and the answer was well I am a teacher. I usually pause. I have an immense rush into my heart as I remember when I was a child looking at my teacher in awe loving every minute of the knowledge they had to share with me. Never did I dream that I would be in a place to return that favor that they gave to me. I usually do a “Mo” Bow and say your student has come back to help you.

In the back scenes of my clinical practice, I am bombarded with students, residents and fellows. Each at a different point in their learning curve. I try to teach what is not written. The art of medicine. Today I showed one of them how important it is to forget the rules and humble themselves to understand who the real teacher is. Each human has a journey that they must face, alone. I have touched on the voice in our head that is unique to us. But if we share this journey with others then we are not alone. I watched today as one human spoke to another. New connections were made. I watched my student being engulfed by the journey they were learning from. What a pleasure it is to be a part of that creation. To see the minds of those who learn to grow. It makes me proud. And today I am joyful.

My day was filled with atoms racing in all directions having a  purpose and happy. I found myself dancing in rhythm  as I “bounced” between the rooms delivering good news, all around. It was a good day. We had excitement build up in our minds like 4 year olds when we made a discovery. It was infectious, chattering away, feeling accomplished and on top of the world. We could not even sit still. I got a lot of hugs today sharing in the relief of being told you will be ok. What can I say except, I love that ! Perhaps that day is coming when I can walk in and always say – Hey there,  you will be just fine. Today was a taste of what I see in our future.

My students watch me practice and I watch them grow. “To know” has been the treasure of the learner. I am teaching them to  wield the power of this knowledge to understand how to make gold from metal; it is priceless. I said today that what you learn my student you must teach others, share with everyone and make sure you know who taught you.

Each experience shared. Each Journey travelled. Each human that I meet.

What wonderful teachers you all are.

Mo

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Melanoma and Sarcoma

Confidential.

It is a very interesting place to be in the room with one of my patients. The medium of trust allows them to share their intimate secrets with me. It is tranquil and exceptionally vast. Where am I tonight you might wonder as you read this? I guess I’m with myself; in a place where I do not wish to share secrets that are given to me in confidence. They are mine to treasure, each time I think of one they are very personal. I try to write about them and find my hands guided away from sharing. What a difficult thing to truly share with you all. While driving home tonight, my friend said “where do you draw the line with a patient?”  It made me think of barriers perhaps we as physicians put up to protect ourselves from our patients’ feelings and emotions. Is there a line one draws when you are evoking their confidence to talk about things that they hold sacred?

I have often thought about my voice on a radio. After recording it, I always tend to say “that does not sound like me”. Our voices are unique to us; we all hear a different version in our heads of what people around us hear. It’s my confidential voice.  It is fascinating to me that I am the only one who hears it my way. It strengthens the thought of my own journey in life.  Personal.  I feel when I am with my patient that I am hearing that voice that is so unique to them that I cannot find the words to talk about it with anyone. I feel I connect with them inside as they navigate their decisions. I share my thoughts of the same situation they are in, it’s like I dared to go down their journey too. When they take chemotherapy or when they throw in the towel and say enough, I am with them. It is that voice that I try to find the frequency.  And I try to align it with how I would feel.

The question is, how do I find my way back to myself?

I guess in this dark night, that is exactly what I am doing. Finding my home again, finding me. It is cathartic that I could share in all the decisions I made with my patients today. It is a pleasure at the end of my visits with them that they stand up to shake my hand. I hope they see that I too am shaking theirs, in complete confidence that what we shared is sacred.

Mo

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Melanoma and Sarcoma

What have they got that I ain’t got?

Courage.

You can say that again. It has been playing like the movie in my mind, with the cowardly lion staring at Dorothy in the Wizard of Oz.

Courage.

I have had an eventful weekend amongst my heroes, my heart is heavy. My tongue is tied. I’ll try to share why.  I saw so many. Perhaps I should call them butterflies. People bursting out of their cocoons. Families who had lost, people in the midst of their fight and those that had won. They all came out to stand up to cancer. They were smiling, they were positive, they believed and they made a difference. They hugged me and pulled at my heart. As I pulled on theirs. They reminded me of the battles I had lost, the ones that I am still fighting and the ones I had won. They said “Mo keep fighting the war”. Their eyes, tears and minds echo inside of me as I sit and write to you. They wanted our team to succeed. I am touched and humbled by my weekend experience.

I have stared into the eyes of my patients, wondering what it would be like to be in their shoes. I always say to them “I put myself in your shoes”. I’m really wondering now,  would I trade places? Would anyone? Here they are faced with an illness that could end their life and they say, “I want to fight”. I see the cowardly lion trembling uncontrollably, yet displaying the power to stand up to the Wicked Witch.

I have used many analogies to help my patients see cancer as I do. A good friend of mine on Sunday reminded me and said  “Mo you just know how to explain things to people- thanks for coming out”. I was looking at the golf course, the trees and the eager faces of people who took time out of their day to care.  “I think I have an empty brain that facilitates things”, I said back. I use simple things to show a point. Thanks for making that point meaningful to me. I stood before you and you all had the courage to ask me questions. I hoped I showed you that no question is “silly” and every question is the researcher in you showing its innate curiosity.

What have they got that I ain’t got? It is a loud echo.

Courage.

Mo

Courage Ride, Saturday, August 24, 2013, Kalona, Iowa.

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For more photos from the Courage Ride, please visit the Sarcoma Iowa Facebook page.

The Steve Yates Melanoma Awareness Golf Tournament, Sunday, August 25, 2013, Waterloo, Iowa.

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For more photos, visit our Melanoma Iowa Facebook page.

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Melanoma and Sarcoma

Nonsense.

“That is what the protocol says.”

I was annoyed. “So you want me to have the patient drive back 2 and a half hours because the protocol says…”

“I know it does not make sense and it is not logical but that is what the protocol says, Mo”.

This was going nowhere. Frustrated, I hung up the phone and I just wanted to break this rule that was nonsense. I was angry. Many things rushed through my mind at that moment. Too many rules I thought out loud. Clinic today was smooth except for this glitch. Got home and went to the gym, it helps me to sublimate and deal with situations that are not sensible.

I sometimes wonder how an idea starts and maybe a lot of you do too. Is it at the gym? Or in the shower? Or are “smart” people putting on their thinking caps? That would be a funny sight. How does one think in a world filled with rules and observations preset and pre-determined. How do you think “outside the box”? I have always thought of it as a black box that has edges that will all fall off. I have marveled at children and their innate curiosity always reacting to that which is new, how rules don’t seem to apply and how their curiosity leads to discovery and excitement. Can I access that part of me that was a child, so I am not biased by observations already made? Are all these rules necessary even when they overpower logic? How does an idea get trapped and shaped? How does it stay free and alive? How can we make our system flexible?

I always try to find a way to make it work. People who work around me know that “no” just does not cut it for me. The rule approaches me rigid. I flex it, find a hole in it, bend it and help my patient get to where they need to. I have watched other scientists do the same- that rare gleam in their eye as they see an opportunity to find a weakness in a theory or a concept. Glad these “thinkers” exist, like misfits they really help add spice to the mix.

I lost a close friend this weekend. She made me think outside the box. She made me bend cancer to fit her life. She made what I do sensible. Thank you….

Mo

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Melanoma and Sarcoma

Bounce.

“It’s a fine line between optimism and pessimism” he said to me, and I looked at him staring blankly. We talked about how it’s so easy to see things with a half empty glass and how the pressures around us sometimes dictate how we view life as it pertains to our practices and the decisions we face.  It could be as Nicholas Taleb would see it, that there really is no glass, but it’s how we in the end decide to see.

It’s been that kind of day.  Bounce.  Like a ball.  I have to have the spring to go from one patient to the other. “Your scans look great” ……….”I am sorry I have some bad news”. Not much more to say when the scans are good; good news brings a few laughs and off they go- anxieties abated until the next scans.  Bad news brings much more discussion, “is there hope? can we beat this?” Like the ball, I am elastic ready for both situations; the good news helping me spring back from the collision of the bad news. I think I am answering the question I am sometimes asked when my patients say “how do you do it?”

I have sat alone in a doctor’s office in silence waiting to be seen. That silence is unbearable. And all I needed that day was an injection into my shoulder. I dislike making patients  wait to hear good news. I yell out loud “yes!” after looking at a scan, springing out of my chair like a kid to get to the person who gets that good news. It’s amazing to watch relief. I have gotten good at reading the faces of my patients.

Bad News. I stare at the scan disbelieving. A meticulous and wise mind takes over, filled with understanding of the greater mysteries of life that the science I know helps me unravel. I sometimes find myself thinking about my own mortality, my heart is heavy, but this when the person waiting really needs me. They do not need me to feel sorry, they need me sharp, ready to navigate and able to get them through this. Like a pilot in a bad storm, as a passenger who knows nothing about flying, I hear myself saying “he better land this plane”.

I want nothing more than to deliver good news to every room I walk into. Reality says differently. I find myself thinking today mostly about the bad news I delivered, not as a sympathetic person but as a physician needing to find the answer to help land the plane, weighing all the odds and stretching my mind to figure this out. Perhaps the answer lies in tomorrow. I have to believe there is an answer out there, that some day while sitting listening to a researcher present his work or explain a phenomenon that there is enough talent in the room to figure this out.

I bounce in and out of rooms, between today and tomorrow, between discovery and a dead end.

Mo

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Melanoma, Melanoma and Sarcoma

Closure.

“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, their treatment and their ailments, I talk shop, science, but I never hear about the way they lived during this time. I never hear about what they did and what they really felt. I want to know that they embraced each day and that they did not let this beat them and that they fought for what they wanted. This was true for me today. I heard how she lived………………… “She hated that pill” and “the sun was all she wanted to do and went out despite you telling her not to” (my goodness, I laughed at that) ……… and we talked more………and I had closure. YEAH! My heart yelled. She LIVED. I always thought I would make the worst patient. I would never let an illness eat away at my life, and I would live despite what the “doctors” say.

“I feel better that I came and talked to you, Mo, I had no idea how to initiate this, I did not know it was even an option” he said to me, staring right at me, through me. I explained he was and always will be my family, and is welcome anytime. I have done this with many families. I guess I want them to know how it makes a difference to me and how it helps me heal too from the loss of a friend. “Thank you for taking the time” he told me, hugged me and left. Really? I believe I have to thank him for taking the time to come to me, to sit with me. One human to the next, is this so hard? What did he have to face? Memories of her treatment, bad news, decisions made……and he came anyway. “I was very anxious coming, I did not know what to expect.”

Perhaps our medical system should have a closure visit built into the system to allow physicians a chance to heal from wounds that sometimes make us appear indifferent or callous. Wisdom has softened my heart, and death has opened my compassion.

I never thought I would be writing like this, talking like this to all of you. When I first started blogging, I thought I couldn’t be myself and that I’d have to talk science and other stuff and be the “doctor”. I am discovering I am not able to do that. I picked Tuesday evening to write because it’s a clinic day for me and I am the closest to my patients when I am in clinic. I also realized how they make me feel.

Thank you, my friends.

Mo

 

 

 

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Melanoma and Sarcoma

I do not know.

“Why me?” she asked me today in clinic.

I’m home and thinking and this question just will not leave me. Really, why? I honestly do not know why.  It is a plaguing question. Many have asked me and I search hard for the answer. I am not about to answer this sitting here on my couch that’s for sure.

I have taken refuge in science and in the minds of the scientists around me. Science has answered many questions for me and has given me the ability to come to patients and explain their disease. And it is important to me to explain disease. It’s why I became a physician.

I have spoken of my heroes who take chances for others and participate in clinical trials and research to help us answer the “why me’s?” When I first started working in the academic world I quickly found that science helps reveal truths and prevents bad practice. Collaborating with more minds helped me make better decisions for my patients. Today I share what I sometimes come home with and some of the questions that make me freeze and I simply say “I do not know.”

 

“How do you know you have the best treatment for me?”

“What if I could find a better treatment elsewhere?”

“There is this miracle drug in Mexico. Do you think this is a good idea?”

“I have radicalized my diet to fight this. What do you think?”

“Am I just a guinea pig?”

“So you are saying there is only a 5% benefit from this treatment and it has all those side-effects?”

“Why should I do this treatment? Isn’t there anything better?”

 

These questions linger in my mind and make me wonder. And I do not know the answers. I task my patients in being the answer, in helping me understand, in helping others. It truly is a sacrifice of a higher order, of our human nature. I have learned to be honest with them, share my thoughts, my biases, and my lack of knowledge. I sound unsure, incapable and incompetent as I argue my case in their presence against cancer. It is a huge undertaking to try to explain this disease. I often find myself saying ” I am a good salesman and I am about to sell you a crappy car”.

Our treatments though exciting and innovative are still primitive. Investing in clinical trials and basic science, and research is our only hope to fight against this crippling disease. How does on choose what is best for a patient in an evolving and erupting world of knowledge. I push the buttons of those around me that dare to challenge the life around us and dare to dream of cures. The Wright Brothers wanted to fly. They created models and tested them, now humans can fly. I work with incredible talent, that tests their ideas, and think about what’s next. And for those who know me – I do push hard.

Michael Henry, PhD, the Deputy Director for Research at the Holden Comprehensive Cancer Center, has become more than a collaborator. Perhaps I can persuade him to talk to you about his research interests and how he made me see cells differently, opening my mind to the secrets of cancer biology and to ideas that contradict the normal we have come to accept. Together we are forging a stronghold in our understanding of cancer – our movement is only forward.

Thanks for reading.

Mo

Dr. Michael Henry and Mo

Dr. Michael Henry and Me

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Melanoma, Melanoma and Sarcoma

Connections.

What an interesting two days I have had. Has me thinking about the matrix of talent that I live amongst.

I was chatting yesterday with Ben Miller, our orthopedic surgeon who handles all the limb surgeries that sarcoma patients need. We talked about a sarcoma symposium and how to bring more talented researchers to understand sarcoma and melanoma biology. It is in these small discussions that I find the thrill of discovery.

I am surrounded by talent.

Our cancer center exists in an academic university environment. Like a spider’s web, we are able to connect through interactions that focus on improving the lives of the patients afflicted with this illness. Wherever I turn, I find an opportunity to connect with someone.

So how does this web come to life? What are its components?

As I learn to write to you all and share my thoughts tonight I want to paint a picture of people who facilitate all the work that comes into a decision for a patient. It extends from helping my colleagues in Missouri understand angiosarcoma biology or keeping it closer to home to understand obesity and how it affects immunity.

It’s Wendee who fights harder than me to keep my ship afloat.

It’s Tina and Laura working hard to maintain a registry.

It’s Marian fixing and regulating my clinical trials.

It’s Melanie and Reggie coordinating and facilitating the research that keeps our fires burning.

Many meet “Mo” and he is just an interface to the matrix that lives behind him. Our multidisciplinary teams that focus on the clinical aspects of caring for patients, down to Erin and Juli who help schedule all the meetings and make this a reality.

I have connected with Scott Okuno at Mayo Clinic and Mark Agulnik at Northwestern in Chicago. And now I’m talking to you. I wonder how this all started? I simply asked to get to know them and found them so receptive to collaborate. It must be the midwest.

I am blessed to be amongst such dedication and commitment. I can see no boundaries.

From Terry and Jo ‘Riding It Out for Amber’; to the Bailey’s for the courage to stand up and bike; to the Yates for yelling “fore”; to Nancy’s promise; to Alissa and her amazing determination to never give up; to Hannah for making me part of her family… no boundaries.

Hence this small introduction to my team- anyone can join us. These are some of the many faces that help me fight. Many who have gotten to know me have asked me how I do it every day, facing this.. I tell them, “I married a psychiatrist” and they laugh. Well, Arwa, my wife, knows better. It is the people that surround me that I draw my inspiration to help those in need. Understanding our connectivity to each other and the willingness of so many to put their best food forward makes me proud to be  a part of all of this.

Mo

 

Check out these websites:

Ride It Out for Amber

Courage Ride

The Steve Yates Golf Tournament

The Jim White Foundation

 

 

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Melanoma and Sarcoma

Take a Moment…

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 me to find answers to hard questions that should be asked. They ask these questions of me and force me to think and explore the impossible, making it possible. They have departed us in life, but in me they linger and they still teach me.

My patients, those that are still with me and have survived, those who have said their goodbyes, those who are still fighting hard. They are my heroes. And I take a moment to remember them all.

A community surrounds each individual. The University of Iowa Foundation has a retreat once a year for those who want to engage in the fight against cancer with me. I share with you this event in pictures that sometimes speak louder than words. Thank you each hero. Thank you for your fight. Thank you for helping someone other than yourself. Thank you for you selflessness.

Mo

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Nancy and Jay White 1

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