Patient Care, Perspectives

Quiet

“I don’t need this right now,” he said as I finished telling my patient the plan of his care. He had been quiet. I sighed and made my way back to my chair to settle down. Sitting down, I let my mind wander. It’s not easy to change things midstream but I think oncologists should re-examine when prompted subtly or blatantly, to what they are actually saying to a patient. I started to eliminate the stressors that plague every day practice. It’s a busy clinic, 40 odd some patients to see, bouncing between good and bad news. We were both quiet. In his silence I sensed his resentment, and I felt sad. Behind his silence, there was anger.

He fidgeted. I watched him remove his cap, stifled by the news I had just delivered. They try to teach you this in medical school as my mind raced through my training (14 years), empathy they called it. As a physician I have learned not to depend only on my training to help my patients but also on my life experiences that have brought me to where I am. I searched for something within my life that he could relate to; I know adversity and I know anger. I looked specifically for strengths that I had understood at his age when I myself had faced difficult situations. Yes, I thought quietly, I know where you are. You’re angry. I let that emotion into me, a little bit of self-exposure, and the patient and I became one. Sometimes it’s hard to invite a complete stranger into your own home, but anger was not a stranger to me.

I was young when I was touched by a war – the Gulf crisis as it is referred to. I was angry then, like a young person would be if their life had been interrupted by something they had no control over. Cancer is a war. It demands a constant engagement of every aspect of our humanness to fight. It does not mean we fight without emotion. It does not mean we are raving lunatics either. It’s a constellation of problems, an inconvenience, a cost, and an interruption. It puts a halt on education, careers, motherhood, retirement, and vacation. It consumes time, money, and emotions. There is never a good time for it, and there never will be. Empathy is a deep connection that exists between two humans where one can show true understanding and bring meaning to a difficult situation. Empathy is not observed it is felt.

We sat quietly. Nothing more needed to be said. In the end, like a spilt jug of water on the floor, we both got up and started to pick up the pieces and clean the mess. Cancer, you can’t defeat the human spirit. Cancer, you are just in the way. Cancer you are not winning anything. Cancer, you have a lot to answer to. Naive is my scientific brain, just as bravery is when facing a formidable foe. I am not the one to bring cancer to its knees but I do believe that those who suffer from it do that daily.

Mo

 

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Perspectives, Sarcoma

Waiting

 

Today’s post comes from guest Blogger, Fletcher Summa. Thanks, Fletcher, for sharing your story with us! 

 

 

I sat in the waiting room on February 8, 2013 in the Cancer Center preparing to tell Dr. Mo that I didn’t want to do this anymore. My treatment was entering the 11th month and my body was bloated and scarred and bore little resemblance to my pre-diagnosis self. I looked around the waiting room and I focused on what I wanted to say to Dr. Mo and settled in to wait for my name to be called. Waiting is something you become very good at as a cancer patient; my mom sat next to me lost in her usual game of Candy Crush Saga on her phone. This situation had been part of my life for almost a year: the two hour trip to Iowa City every other week, wait for a bed, get hooked up to chemo, stay for days, go home, feel awful, get better, then repeat. However, this time I could no longer go in and just face it the way I’ve done in the past.

The chemicals were really starting to take a toll on my body, especially my heart. The methotrexate I was scheduled to take had been cancelled due to my lab results. This meant that I would have only two rounds of treatment remaining—“only” two but it was dependent on the results of my heart scan. Regardless of the result, I planned to tell Dr. Mo that I was done with all treatment.

It all began when I was diagnosed with Osteosarcoma on March 21, 2012 and within weeks I began treatment, then on June 21, 2012, I underwent surgery. The surgeon removed the tumor and if the tumor was over 90% dead then I would have a shorter treatment plan; if it was below 90% then the treatment would be more intense. Yet because my heart scan results had not improved I was informed that I couldn’t receive further treatment without risking permanent damage. Though it doesn’t quite sound like it would be, this was indeed good news. This was the day that I waited almost a year for. “No more chemo.” And it was finally over.

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I smiled when I heard this news and feelings of joy overwhelmed me. I could get on with my life and not deal with any more side effects. Aside from the doctor appointments every three months, I thought I never had to think about cancer again.

I was wrong.

What I didn’t take into account was just how much this experience had consumed my life. Living and surviving became indistinguishable. Together with the nausea, the doctor visits, the questions from friends and family, the pills and treatments, and the pain, being a cancer patient became who I was. My return to the real world after the chemo was extremely difficult. I simultaneously wanted to talk about it and to NOT talk about it.

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Yet life goes on and my life had to continue to move forward. My hair was growing back, I was losing weight and I had more energy than I’d had in a long time. The mindset I had throughout chemo was that each round was a victory and that every small nauseating triumph would accumulate to success overall. And what is cancer but a concentration of painful battles? If I had won against that, then surely I deserved to live without any more inconvenience.

Again, I was wrong.

Without this understanding I might have gone through life thinking that the world owed me something and that every hardship had to be reimbursed. What if I spent the rest of my life asking “why me?” or cursing the wind every time my leg hurt, then there would be no time to appreciate the fact that I made it through the treatment. Sometimes, often times, life is unfair. But that is only part of the picture and a small one at that. Maybe this is the real lesson I learned.

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It’s been 29 months since my chemo ended and I’m still not sure I’ve really ever left that waiting room. What remains though after spending so much time waiting and reflecting on my life, is an enormous appreciation for those who supported me throughout this journey. The fact that so many people supported me, including my wonderful family who sat alongside me in the hospital all those days bored out of their minds and not knowing what the future holds. To the doctors and nurses who were able to balance their work responsibilities while being kind and compassionate, proves to me that people are capable of extraordinary acts of kindness and strength. It is because of them that I made it through an otherwise horrific experience, and it is because of them that I appreciate life so much more now.

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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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Patient Care, Perspectives

Injured

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

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

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

“Hi Dr. Mo,

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

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

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

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

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

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

Mo.

 

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Connections, Melanoma and Sarcoma, Perspectives

Fog

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

 

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

 

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

 

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

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Melanoma, Patient Care, Perspectives

Fabric

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

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

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

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

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

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

Mo

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Patient Care, Perspectives

Defeated.

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

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

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

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

-Mo

 

 

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Patient Care, Perspectives

Fresh Eyes

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

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

Here is what they had to say:

 

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

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

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

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

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

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

-Hailee Reist

 

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

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

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

– Gal Wald

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Patient Care, Perspectives, Sarcoma

Random

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

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

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

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

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

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

Mo

 

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Patient Care, Perspectives

Frazzled

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

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

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

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

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

Mo

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Perspectives, Sarcoma

Nik Jiruska: Ewing’s Sarcoma Survivor.

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

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

Nik Jiruska 2

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

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

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

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

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

Nik Jiruska 1

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

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

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

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

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

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

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

-Nik Jiurska

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

 

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Melanoma and Sarcoma, Patient Care, Perspectives

Yell

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

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

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

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

Mo

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Melanoma, Perspectives

I’ve Got You Under My Skin

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

 

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

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

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

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

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

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

-Tom Armitage

Tom Armitage

 

 

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Perspectives

Is It a Choice?

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

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

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

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

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

Mo

 

 

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Perspectives

Blog Holiday!

Dear friends,

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

Take Care

Mo

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Melanoma, Perspectives

Joy

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

Jim White's Family

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

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

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

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

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

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

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

And lastly:

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

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

Photo of Jim from Vietnam

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

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

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

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

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

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

-Jay White

Follow The Jim White Foundation on Facebook.

 

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Patient Care, Perspectives

Do You Read Cancer?

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

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

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

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

Mo

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Melanoma, Patient Care, Perspectives

Tad

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

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

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

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

Mo

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

Mo at Paula Sands Live

Mo tips for tad shirt

Tad Flyer

 

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Perspectives

Unsolicited

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

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

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

Mo

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Patient Care, Perspectives

Interception

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

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

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

Mo

 

 

 

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Patient Care, Perspectives

Reconciliation

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

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

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

Thank you.

Mo

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Patient Care, Perspectives

Inconvenience

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

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

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

Mo

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Patient Care, Perspectives, Sarcoma

A confession to a friend

Dear Hannah,

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

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

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

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

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

Dear Hannah with love from Mo.

 

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Perspectives, Sarcoma

My sister, my friend

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

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

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

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

Hannah 1

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

Hannah 2

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

Molly McDowell

Hannah 3

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Patient Care, Perspectives

Fragile

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

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

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

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

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

 Mo

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Melanoma, Perspectives

Eclipse

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

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

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

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

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

Mo

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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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Patient Care, Perspectives

Holiday.

What does that word mean to me? My patients battle daily with cancer and the therapies I impose on them. Coming in for their chemotherapy; tolerating the side-effects. They grow weaker and more tired as the cycles trudge on. It’s like doing 100 miles on a bicycle ride. The first 25 miles has me saying “I can do this”, the last 25 miles I am screaming “when will this end?” That is the closest I can come to imagining what they are possibly going through.

I watched today as I told my patient “let’s take a break, a holiday; a chemotherapy holiday”.

He looked at me and said “really?”

It is always fun for me to break this type of news. It’s when I get to really say “yes, you’re done with the therapy and your tumors are stable and not growing, I do not see a reason to push this treatment any further. Take a break”. I smile ecstatic, “stay away from Mo” (that brings a laugh). “Let me see you back in 8-12 weeks”.

“Wow that long huh?” This is usually followed by a sigh of relief, and I sometimes see a small “Mo are you sure?” or the even better look  “3 months away from you, I think I will miss you.”

It tickles me to send them off. They need this break. It’s what they fought for. They go back to life; to their days, it’s a road to recovery. Like the changing seasons. On therapy, it’s like autumn becomes winter, and off therapy it’s like winter wakes up to spring. I bet you cannot guess what I look forward to the most. Go on… guess?

There is a joyous moment in my heart in meeting my patients 3 months after they are done with their chemo, and it truly is that I forgot what they looked like with hair.

Mo

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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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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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Melanoma

Melanoma, Iowa and Our Story.

Melanoma has been a disease that has fascinated me. Unpredictable, dangerous and exceptionally intelligent. Its funny to talk about a disease this way.

I have been wondering how one actually starts blogging, thought about a start but perhaps I can talk to all of you this way.

Through the science that is attached to our work and our mission. Melanoma is a disease that is increasing in Iowa and across the world. 1 in 68 people in the United States will be diagnosed with this Melanoma in 2013. How can something so small on the skin have such a powerful impact on us as human beings?

Perhaps its origin might shed light on how and why it is unpredictable ; It originates in a group of cells called the “Neural Crest” , these are found very early when we are only embryos. Neural crest cells, stem cell biology, melanomagenesis (the cancer biology of melanoma), how these cells function normally are important in helping scientists elucidate the secrets of this disease.

Over the last few years, A dedicated team in Iowa and the midwest is slowly coming together to focus its efforts on melanoma research and understanding this disease. We have partnered through the Midwest Melanoma Partnership (MMP), http://www.midwestmelanoma.org, with 15 institutions to create a robust mechanism to share ideas and collaborate on many projects.

I will be writing regularly every wednesday night telling you our story and letting you meet the amazing people who have really made an impact to help patients get the best care. We value collaboration, creative ideas, universal sharing and innovation. Let this be a platform for us to communicate and for us to understand how to do this better.

Mo

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