Melanoma, Sarcoma

The Messenger

What happens when someone reveals a difficult part of themselves when they are faced with adversity? New parts of us are expressed as we break down, or we show our teeth, when we fight or bite, or retreat in situations we wished we had never been forced to endure. I have seen all sorts of reactions that range from anger to despair. I have seen people floundering, and others drowning, trying hard to breathe as they search for a ray, a straw to hold on to. The situation is constant, unrelenting and never-ending. At times, their fear grips them, and instead of running away, they go inside to a place that is hard to see. They retreat within themselves, and they do not see or hear me. When I sit in silence next to my patient there is a myriad of things I see, and more I cannot discern. I am not sitting idly watching this, I sit present; connecting, empathizing, supporting, and waiting for something. Maybe that small flicker of courage. Today I will blog about the small things that I witness as a patient slowly finds the strength. I sometimes wish I could tell my patient, I am merely the messenger.

My patient was hunched over as if his backbone was weighed down by the burden of the news in his head. I sat close on a stool sharing the news and embracing the reactions that I have become accustomed to, when delivering cancer-related events. I needed to be present, open-minded, compassionate, and resilient as sometimes I become the target of my patients’ anger. It is never intentional on their part. I have asked myself “Have I ever been this scared? Has myself been endangered, and the ones so dear to me devastated for me, or for themselves?” I go to those times. Many things are said in such situations, that later when I recall them I wonder how one overcomes that reactivity, the impulsivity, and the urge to retaliate. I dismiss all my hurt feelings in these situations, yet I am fully aware of them as I struggle inside too. I search deeply for familiar feelings to balance the raw emotions that transpire.  I play with my own fears in my head remaining calm throughout.

My hand touches his shoulder. My voice resonating from a deep place, where my emotions are oscillating, from my own envisioned fears, from my delusions of loss and grief, from a dreadful moment I have yet to live. I talk slowly, at first, telling a small story that is very personal to me. I share that some of my own sufferings a point to reconnect perhaps. I search for my friend who is locked inside the tunnel with no light. It really does feel like I am blind sometimes aimlessly trying to find where they went. I search for small things, and as I find them, like a catalyst, allowing for the exchange of some words, sometimes questions are pummeled at me which I navigate not always with ease, but truthfully. The visit does not always end with my patient leaving with a smile.

Being present is made up of small things, that should not be dismissed as they are that ray of light that bring hope back to a patients heart; even when it does not happen in front of me, I know I have to start it. It is a privilege to be a part of a transformation, but it is exceptionally intimate to be at the start of one.

 

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Melanoma, 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.“

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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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Melanoma, Perspectives

Melanoma? That’s it?

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 Molly Menard.

 

I am not a blogger. I had to google what blogging is all about. I am sure this is not your normal kind of blog, but here it is. I am sharing with you the dates I replay over and over again in my head. Many things that happened in between are painful and I don’t like to think about them. Hell, the stuff below is painful. But is there anything about Melanoma that’s not?

January 2007.

Mark, my husband, walked out of our bathroom one night in his boxers. I remember it just like it happened a minute ago. “I think my mole is changing” he said. I could not tell, but then again, I never paid it any attention, it was always there. We googled moles and came across pictures and at that time, the ABCD’s of Melanoma (sometime between 2007 and 2011 they added the E to the ABCD’s of melanoma). His mole did not look like anything we saw. So we did not worry.

Mark Menard family42010

A few months later I said to Mark, “I think you’re right; your mole is getting bigger. Maybe you should call and get it checked out.”   He put it off.   We were not too worried.

June 2007.

One day in late June, Mark was wrestling around with our youngest daughter Stacy who was 7 at the time. Mark grabbed his abdomen and dropped to the floor. Stacy’s foot had rubbed against her daddy’s mole, ripping it off. Mark decided to have it taken off. His appointment was right before the 4th of July.

July 2007.

A few days after the 4th, the phone rang, “Hello, this is Dr. Smith from the dermatology clinic at Balboa Naval Hospital. Is Senior Chief Menard available?”   I knew right then that something was wrong, because really, how often do doctors call you at home? She told me his biopsy results were in, he had melanoma. She had already made his appointment with Dr. Chan, the surgical oncologist. I remember thinking, “If he’s going to get cancer, at least it’s this one.”

Before July was up, Mark had surgery – a wide incision and lymph node biopsy. Dr. Chan gave us the news that one lymph node from his groin came back positive, the melanoma had traveled. Another surgery was scheduled in a few weeks. They were going after more lymph nodes, this time in his leg. That is when we knew it just got serious.

Mark Menard sandiego walk2010

December 25th 2009.

It had been two and half years since Mark was diagnosed with stage III Melanoma. In that time, Mark had a number of surgeries, scans, treatments and we lost count of the number of doctor appointments.

After putting the kids Christmas presents under the tree, Mark and I crawled into bed shortly after 1:00am.

I woke up almost an hour later. Mark was having a seizure. The next thing I knew, I was on the phone, repeating over and over 10182 Voge St, our address. 14 minutes later, the paramedics arrived. I hung up the phone with the 911 operator. Two paramedics and six firefighters were crammed into our bedroom and the hallway outside. I sat on the hallway floor shaking. Mark finally came too. He was confused. His first question to the paramedic, “Where’s my wife?” All that is going on with him and he was worried about me.

5:00 a.m., I call our moms from the hospital, crying, begging for them to pray.

6:20 a.m., Christmas morning, four hours after Mark had his seizure; I sat next to my husband, holding my husband’s hand, trying to be brave. The ER doctor sat on the other side of Mark’s hospital bed. Mark looked scared. I was scared. We knew what was going on. We knew what the doctor was going to say

“The CT scan shows one tumor in the……..” I have no idea what he said after that. I was rejoicing! One tumor! Not multiples – just one!   Thank you God, just one! We can fight one! It was a small victory for us. Thank God! Just one!

I called “the moms” with the news. Both moms had already booked their flights, they were on their way. Our neighbors loaded all of our Christmas presents into their car, along with our daughters and brought them to the hospital. By 9:00 am, we were celebrating Christmas on the floor of Mark’s hospital room. I was praying, begging God, “Please don’t let this be our last Christmas”. Shortly after the presents were opened, Mark’s best friend came to pick up the girls. We had no idea what was going to happen next and we did not want the girls to see it.

December 27th, 2009.

5:50 a.m., they came into the room to get Mark. They were taking him into surgery to remove the tumor from his brain.

December 25, 2010.

We are all smiles. The girls (ages 10 and 13) are sitting on the floor waiting for daddy to pass out their Christmas gifts piled under the tree. I am thanking God for giving us this Christmas. Mark was doing well. He had retired from the Navy in November after a 22 year career. We moved from San Diego and bought our very first home in Iowa. He was on a successful BRAF study. Things were looking up. I was thanking God.

Mark with his kids June 2011

July 14th, 2011.

10:03 p.m., four years after being diagnosed with stage III melanoma, 8 surgeries and 5 failed treatments, my husband died. Mark died at the age of 41. Mark died because of a mole.

It has been almost three years since we lost Mark. I think back to the phone call with Dr. Smith often. I had no idea. Mark had no idea. How could a stupid mole he had his entire life kill him?

I tell people about doing self-skin exams, I tell them about the ABCDE’s of melanoma. I have set up free skin cancer screenings for anyone who wants to come. I warn parents and teens about the risk involved when using tanning beds. I have gone to local schools to talk to students and staff about melanoma. I have planted trees at our local school, so the kids can play on a shaded playground.

I am still fighting melanoma.   I promised Mark I would not stop fighting.

– Molly Menard

Mark Menard

The below photo is of Molly and her daugher Sarah, taken on Saturday, May 3rd at the Steve Yates Melanoma Awareness Golf Tournament in Waterloo, Iowa. Molly and Sarah held a free skin cancer screening at the event where nearly 50 people were checked for skin cancer by two dermatologists from the University of Iowa, Dr. Amanda Tschetter and Dr. Krishna Mutgi. Keeping that fighting promise to Mark, Molly coordinates a free skin cancer screening each fall in her home town of West Branch, Iowa. This year’s screening is scheduled for Saturday, October 4th.

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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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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, 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, 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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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, 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

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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