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

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

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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