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, 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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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, 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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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

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

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

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

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, 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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