Fog

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

 

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

 

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

 

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

Blog Holiday!

Dear friends,

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

Take Care

Mo

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

 

 

 

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