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.

 

Dialogue

Person: Can you help me?

Me: I believe that is why I am here, ready with a new treatment, a loaded gun and many tricks up my sleeve.

 P: Is it always this hard?

 M: Yes.

 P: Is there hope?

 M: Without it, we will not survive.

Imagine this dialogue that starts in the pit of someone’s stomach, a mixture of fear, anger, hope, and courage.  I partake in it and I do not dismiss it. Have you ever been afraid?  Where the walls caved in and it seemed confusing? Where what consumed others felt petty, trivial and meaningless. When you sit on the edge of a diagnosis of cancer and are worried about yourself, your family and your loved ones. This is the human I meet, sometimes confused, often afraid, and always hopeful. This is the person from which courage emanates. With this person, I stand united.

Cancer: I am here.

Me: Who are you? And why have you invaded us?

C: I am a product of survival, a state, a process. Who are you?

M: I am here to kill you.

These are my words when I look at cancer, the perfunctory introductions. A long battle is about to ensue. This is the enemy I know well. On this battlefield, a new sword has to be forged, to fight in the face of fear, uncertainty, and discouragement.  Every day a different person walks into my life and stands stronger against this common threat. Our unique existence, our individuality is a paintbrush that brings to life our depths and our dreams. In life, we march only forward regardless of how timid we feel or where our hearts want to be. I sharpen the reality that was thrust upon this person with my words. My patient stands steadfast in trust and belief.

And the dialogue resumes………

 Me: Which way this time? Cancer, are you ready?

 

Quiet

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

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

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

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

Mo

 

Waiting

 

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

 

 

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

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

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

Photo 1

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

I was wrong.

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

Photo 2

 

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

Again, I was wrong.

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

Photo 3

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

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.