Melanoma, Patient Care, Perspectives

Permission

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

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

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

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

Mo

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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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Melanoma, Patient Care, Perspectives

Trash

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

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

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

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

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

Mo

 

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

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

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

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

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

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Melanoma, Perspectives

Cheers and Have a Wonderful Life!

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

 

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

Our Story

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

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

Brett Yates- Yates Family

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

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

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

SAMSUNG

Who Was My Father?

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

Brett Yates- Steve and Sons

How We’re Fighting Melanoma Now

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

Brett Yates- SYMA Check

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

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

Brett Yates- Steve and Lani

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

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

A Final Note From Dad

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

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

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

Well, for me…what they say is true.

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

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

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

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

Cheers and Have a Wonderful Life!!”

Brett Yates- Steve North Endzone

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Connections, Melanoma

May is Melanoma Awareness Month

Dear Friends,

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

Stay out of trouble

Mo

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Melanoma and Sarcoma, Perspectives

“Stay out of trouble”

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

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

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

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

Stay out of trouble my friends.

Mo

 

 

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Melanoma, Patient Care, Perspectives

7 Days of Jim

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

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

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

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

Mo

 

 

 

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Melanoma, Perspectives

Joy

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

Jim White's Family

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

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

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

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

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

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

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

And lastly:

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

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

Photo of Jim from Vietnam

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

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

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

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

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

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

-Jay White

Follow The Jim White Foundation on Facebook.

 

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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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Melanoma and Sarcoma, Patient Care, Perspectives

Readers Asked.

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

Readers Asked:

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

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

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

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

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

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

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

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

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

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

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

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

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Melanoma and Sarcoma

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, 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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