By Morhaf Al Achkar, MD, PhD
I was driving back home from the lung doctor’s office. He had tapped a couple of liters of fluids from around my lungs. Yes, it was painful. It felt as if someone was stabbing my back with a knife. It is as if you know that a sharp object is penetrating through the layers of your skin and muscles, but you also know you need to stay still and not resist it. When your lung expands is when it hurts the most.
Those airways had collapsed for so long under the pressure of the fluids around the lung that when they opened up again, I felt a pain like I never had before. I thought I couldn’t take another breath. The pain and inability to breath lasted for only a few minutes, but it felt like hours.
After finishing the procedure, I headed home. That was the second time I’d had this fluid tap; the first was at the emergency room a few days before. As I was driving, I asked myself when this was going to end. I thought of the x-ray image of my shrunken lung and all the fluids around it and wondered when I would be back to my old self.
It turned out that would never happen.
Two days after I’d had those thoughts, I sat down with the same lung doctor in his office. He appeared concerned, and his face was dark. He still maintained a kind but faint smile of genuine care as he suggested that we go over the images of my chest that had been taken a few days prior. He explained what we were seeing.
I am not an exception. People get cancer, and I am one of the people.
Since I had looked at them myself, multiple times, and read the report, there was no news. But afterward, he went on to explain the results of the pathology report. He promised that he had called the pathologist himself to confirm them and that he had been shocked to find that there were “malignant cells in the fluid around the lungs.”
It was cancer!
I knew that finding malignant cells in the fluids around the lung means a Stage 4 cancer of some sort. That is not good.
I have cancer, and it’s Stage 4.
That was my first thought. But what I said first with my eyes starting to water was, “I am not an exception.”
People get cancer, and I am one of the people.
I am also a family doctor, and throughout my career, I have taken care of people with cancer. I have ordered the workup for patients who presented with troubling symptoms and then given them the diagnosis of a malignancy. I had shared the news of difficult diagnoses with patients.
To think that I would have been immune from that same fate was not something to occur to me; anyone can develop cancer.
Still, when you are the one who has developed cancer, you are alone.
Your cancer is your disease, and while it can spread in your body, it fortunately does not spread to other people; the disease is isolating.
All of a sudden, your life path, which was once in parallel with the paths of others, takes a different turn. But you are still a person. You want to connect with others, and you want to share because what you experience is meaningful, at least to you. It is significant to you, and you wonder if others would see it the same way.
I grappled for a long, long time with why to write about my experiences. I started writing a book at least four times.
But I have never finished the work.
When you write about yourself, some tensions and conflicts arise. Whenever I start writing, I struggle with the tension between writing about myself for me, as an authentic person, and writing for others in a way that is meaningful to them. There is also the guilt that arises because, as I tell my story, I become self-indulgent, and that is shameful.
Cancer patients, aware of their mortality, are sensitive to the vanity of self-indulgence.
It was not until November 2017, when a year had passed since my diagnosis, that the feelings became more mixed. There was the joy of still being alive after having thought I would be dying in a few months.
There was also the hope that comes with surviving one year: if I had survived 365 days, I could survive many more.
As I attempted to begin writing something about my experience, I found an article in a medical journal that led me to a whole body of work about the experience of lung cancer patients.
At first, I was scared to dive deeper into the struggle of others. A lot of the lung cancer patients described in the literature had died quickly. Many, with advanced diseases, did not have the opportunity to make sense of their story, let alone share it with others.
What troubled me the most, however, was that much of what had been written about the experiences of these patients had been written about the patients and not by them.
What was written about lung cancer patients was in a language I would not use to describe my own experience, as a subject with agency. There were words about the experiences of shame, blame, and guilt. There were also words about living in constant fear or in denial. They were words that one would use only when describing the experience of another that they, themselves, had never understood.
Because I struggled to understand my experience and make it understood to others, I thought I could do something here, and it became my commitment to lend my voice to the people who struggle with this illness.
I know how to have a conversation with people. I have learned as a doctor, and as a researcher, how to invite others into spaces of reflection and authentic dialogue. Should I not use my talent where I could make an impact?
That is why I decided to write this book.
I interviewed thirty-nine people with lung cancer, and in this book, I share aspects of our stories. They are individuals, like me, who are fortunate to be alive at a time when science has made it possible to survive with advanced lung cancer for more than a few months.
Our experiences resemble nothing that many of us have lived or witnessed before
They are also like you, before their illness, men and women with busy lives, families, and friends. Some worked as doctors, teachers, writers, builders, and managers. Others stayed home to take care of their loved ones. Their ages ranged between thirty and seventy-five.
We are living longer than we initially expected, and this has made our experiences resemble nothing that many of us have lived or witnessed before.
These are authentic people who have had time to reflect and think about themselves and their lives in the face of the absolute dread: death. Many of them have captured with their words some of the essences of our struggles as humans. Some are examples to those who are curious about the meaning of our existence.
“Roads to Meaning and Resilience now” is available now on Amazon.