Mute

There is a button on everyone’s remote control that can at any time mute any electrical device that makes a sound. It’s there and we can use it. We don’t always mute things. We have all grown accustomed to the noises around us. Being around a device emitting any sound keeps us distracted, engaged, and connected.

Death is an irreversible mute button. It leaves behind a bewilderment of emotions, a tearing separation of souls, a loss of interactions that once were, a silence that is deafening. Once pushed, a person is blocked from life. We cannot engage with them. I have questions that are left unanswered, events that I cannot explain to the family of a lost one, to my coworkers and to myself. Unsaid things can never be shared, and unfulfilled connections can never be restored. I have to go deep inside me to find a reason behind what just happened, how they felt, what they last shared before they got silenced. I have to work my emotions through the grief of loss, balance my mind to help someone else and continue to live on through the perils that life still has for me.

I try to imagine a life after the loss of a loved one, where only the living participate, and life must produce from its sole ingredients the answers to those who are no more; answers that even challenge the scientific mind and the soul.

“Why go on?”

Every human life lost to cancer has its toll. To me I struggle with the question, “how to get up and do this again?” I don’t mute my feelings, or block my emotions.  They travel with me, and sadness does overcome me many times over.

Together with those who have felt a loss, I get up.

 

Injured

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

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

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

“Hi Dr. Mo,

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

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

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

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

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

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

Mo.

 

“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

 

 

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.

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.

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 28^th 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 *4^th 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.

 

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