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

Defeated.

Defeated. She sat there, her swollen abdomen so uncomfortable. The news of her heart function excluding her from the clinical trial I had planned on enrolling her in like a trigger to an explosion brought a flood of tears. I pull up a chair and hunker down for my discussion. It is just that, hunkering down. Unafraid to state the truth that things were not going well. I have found myself lately quoting Voltaire quite a bit, “the art of medicine is to amuse the patient and let nature cure the disease.” She was clearly not amused, and nature was not going to cure the disease. Rather, nature was the disease.

My hands grappling with the tissues to absorb the tears. A conversation begins my words weaving a fabric of understanding. We talk about getting her comfortable, removing the fluid, helping the heart a little bit with a medication, and starting our treatments. It was Interesting to see her tears drying up. And she looks at me and says “you are making this up as you go along”…..I smile. Insightful she reads my mind, yes most of the time that is what I do. I am presented with a difficult scenario and as I think out loud, I find the answer. Words buy my brain some time to think, the humor facilitating the delivery of the plan I have to give. The laughs allowing the pauses to deliberate an action that I myself might not have been aware of.

I was in awe of her perception of me. She was slowly coming out of her defeatist state, and she was starting to believe that she could depend on me again. That is the “art”………..oh Voltaire how right you are. Amuse the patient and nature cures the disease. Transformed, my patient begins to see the words I share, the plan of her care now becoming a reality in her brain, she logs on to hope, she redefines trust and she looks at me and says “ you are the man with the plan.” Her husband watches this eagerly, asks the right questions and becomes engaged. She wants to not give up, how many have walked this path. She is smiling…..oh yes this is my victory.

The question is why do they come defeated? I watch this human struggle, and I marvel at how it is overcome………….every time……even if the end result is death. It is not death that we need to conquer, but rather our feelings of defeat (perhaps that is the disease). Death is a part of life, and cancer is a part of nature. It is not a victory for cancer, but for the person who learned quickly to embrace their health, their fight, and their treatment and own it, that even death can be conquered. My friends, it is in our human connection we find the strength to fight some of the hardest unknown that I have come to respect.

-Mo

 

 

2 Minutes

I have been in practice now for 10 years, not counting my training and medical schooling. My practice and approach to patient care has evolved over time. I started blogging 1 year ago, and this has uncovered emotions in me that I did not know existed, and has proved to be an amazing way to communicate with my patients. Comments from readers, friends and family have opened my eyes to a side of cancer care that I had not been before. Through this I have interacted with so many people at different levels in their own inner struggles.

I think of eyes as cameras capturing moments, faces, and emotions with ears recording snippets of conversations, laughs shaking voices and silence when words do not come out. My brain stores memorable events, in short spurts I connect the events, the decisions, the emotions that they stirred, the results they brought about and this hard drive contributes to my thought processes, my experience, my memories, my regrets and my pride. My life story and those of my patients constitute a switchboard of things that worked, things that were close calls, and things that caused harm. These are powerful, invaluable, and unforgettable events pushing me to share it as science, knowledge and a voice in a blog.

I am thinking about those interactions tonight with those who I have met. I am considering, what it would be like if I was granted 2 minutes to talk to each person again. My excitement builds up as I think who and where? In clinic? Or maybe over dinner, in a speed date format? Or better still in the park or at a party? 2 minutes with each: the dead, the living, the survivors, the fighters, the families and the learners. Would I pitch my thoughts or would I share the many things I have learned? Would I start with those I disappointed, or those I had the most success? What would I say?

Tick tock goes the clock and we all know it goes only one way. At the end of my clinic day, looking back at the many hours spent counseling my patients and making decisions, I believe if I did have the “2 minute” stage with each human I have interacted with I would want to say:

“My decisions were empowered by your choices in life and what were important to you given the knowledge I shared. Please know you have added to my experience that goes forward to help someone else and it is never idle. There is no event that you have faced that goes unnoticed and that I remain in your debt for the knowledge that you have kindly shared.”

Thank you.

2 words that capture much more than 2 minutes could ever have.

Mo

 

 

Fresh Eyes

Many people come in to my clinic to shadow me and follow me around seeing my patients with me. Today I have asked 2 college students to share their thoughts. I had sent them both an email that said:

“Thank you for coming to the clinic, you and another college student have enhanced my understanding of many things that practice can offer. I want to task you with something, not sure if you would do it, but worth asking. Can you write to me from your age perspective what you perceived in the clinic about things like death, treatment, cancer and patient care? I would welcome the feedback. Did you enjoy it? What particularly was intimidating? What did not jive? Or things you liked or questions that persisted in your mind………..”

Here is what they had to say:

 

Mo,
Before shadowing in an oncology clinic, cancer was a statistic, it was something my older relatives had gotten when I was too young to really understand, it was a great research field, it was cells dividing out of control. When I stepped foot in the first patient’s room, cancer was suddenly none of those things. Cancer was right in front of me; it was a person, a family, a lifestyle.

As a person who tries to avoid less-than-happy emotions at all costs, I have always tried to take a passive approach to death. Somewhere lurking inside me were all the thoughts about death that I tried to keep shut away, telling myself I would deal with them when I had to. After the first time I followed Mo around his clinic, I left in complete shock, telling myself I would never be able to do that kind of clinical work. I saw how strongly death affected Mo’s life, and I was not ready to let those thoughts out of their caged place, let alone work with death every day. I told myself that I had a wonderful experience learning from Mo, but there was no way I would be able to do that as my career. When Mo invited me back to shadow another time, I felt compelled to face the unsettled feelings of the first visit.

I am extremely thankful for Mo’s generosity in letting me into the clinic another time because leaving the second visit, I had a completely different outlook. I like that treatment is a puzzle. Not everyone is able to have the same treatment with the same outcomes because of a multitude of factors. Therefore, each day, each patient needs complete concentration in order to figure out what kind of treatment will work in each specific scenario.

It was shocking to me what good spirits many of the patients were in. Cancer is such a scary word, but it almost seemed as if many patients were moved by the solemnity of their condition to fight not only for themselves, but also to help future patients.

It was either a defense mechanism, or truly just caught up in all the information, but I noticed that almost every patient I saw was so focused on the logistics of fighting the cancer that they did not seem focused on death, at least not on the outside. They asked very few emotional questions, the types of questions I had expected in an oncology clinic; most questions were in search of more information about what the cancer was doing and what was the next step they needed to take. Perhaps this is because while they are out living their lives, these thoughts of death creep in, but when they are in the walls of a medical facility, they feel more at ease with real answers instead of the tales their minds come up with.

The mind is very powerful. It can deceive, create, and heal. I am still not exactly sure how exactly the mind plays these roles in a cancer patient, but just in the few hours I was observing, it is obviously that long after the body becomes ill, their mind still continues on, in whatever fashion it can.

-Hailee Reist

 

Mo,
When I first stepped into your clinic, the thought of death was last on my mind. I guess it didn’t register with me that I was going to see terminally ill cancer patients. When visiting patients I found it rather odd to think that these people had cancer. The mood was always light, amid witty jokes that always made the patients laugh as if they were seeing an old friend. The topic of cancer obviously did come up, but for the most part its discussion was very limited upon your arrival to the room. I found that fairly surprising, given the severity of their ailment. The word “death” has never once been uttered in front of patients, yet you told me behind-the-scenes that some might not live for long. It was remarkable to see such juxtaposition. The light-hearted mood was an especially effective mask that seemed to propagate happiness and hope instead of sadness.

Although we had many discussions, there was a particular conversation between us that stuck out to me. We were talking about the future of medicine and you brought up the upcoming battle between surgery and drug treatment. I never really thought about how we are essentially one pill away from curing cancer and that surgery in the future may not be as relevant as it is currently. That really struck a chord with me. It was very interesting to think that surgery as a profession may decrease in demand in response to cancer drug therapy. That argument has definitely inspired me to think on the long run and ponder about the competitiveness and need of certain medical specialties.

Overall, I very much enjoyed the experience. I was able to observe many diverse cases and I was lucky enough to see some patients twice and see how they have reacted to their treatment. I am glad you exposed me to medical oncology. This has been an educational experience that I sincerely appreciate. Thank you for allowing.

– Gal Wald

Random

Death is a door. It is a moment in time that is well-defined.  Once it happens it is irreversible. Just like the diagnosis of cancer. It cannot be undone. I have said the word “Sarcoma” to so many patients. Yet this is a rare disease. It stems from the Greek word that means “fleshy growth”. Yes it is old, and it was present in history before. It scares me to know so little about it. I am just perceiving its vastness. Sometimes when I share with my patient it feels like I am speaking a different language. Muffled I sound to the patient, loud to the student. When I teach it I find myself saying to my students “Sarcoma makes me look smart because there is little known about it, and not a lot of people grasp it. Although I do not feel I know much, it just seems enough.” It is hard to comprehend.

I just hung up the phone with one of my fellows, he was talking to me about a patient who was not doing well. I could sense the eagerness in his voice to find another treatment, but the realism that there is none comes from my experience. A resistant disease to treatments that depend on a very old medicine; surgery – Cut it out, until you cannot , then keep trying to slow it down, with an inevitability that you cannot escape. A truth I have been facing many days in only trying to communicate it better with those who suffer its consequences. We can never relive the past, we barely stay in the present and the future never comes.  But there is a point when all this stops. I oscillate between the concept of death and the diagnosis of sarcoma.

Sarcoma! What is it? I don’t know? We have defined it as more than 150 subtypes. It stems from a very primitive cell called mesoderm. The most common cell in the body but it only makes up 1% of all human cancers. Rare is the diagnosis. Having a sarcoma gives uniqueness to a moment that really makes the person in front of me rare. Having a diagnosis of sarcoma gives definition to a cancer journey, to a patient’s identity, and to my relationship with them. I touch upon the relationships in my mind briefly, like staring at scars that are hard to forget. The knowledge of sarcomas is derived over many years of experience; it is slow to digest, hard to understand. Just like the knowledge of death.

Why am I writing in this way to you this week? Just random thoughts as I sit here on the couch thinking. Perhaps like the random selection of a sarcoma that appears in a human being. Random but exceptionally rare. How can that be random? I share with you my inner pendulum as I swing back and forth between a disease that is so little known and an event so little studied.

It takes a lot of effort and collaboration to get together and understand this very difficult disease. I believe Sarcoma doctors are the only ones who collaborate for the right reasons. They genuinely need the guidance of each other and act as a team to help understand this very diverse, very unique disease. I think of my patient who is struggling maybe near his end, after resisting so many therapies, what else can I do? I think about how inevitably I will fail, trying to find the key to helping patients. We have had small victories in our understanding but it still remains a mystery. I am in constant battle against the unknown and I am about to be wounded again, scarred, as my patient represents my unforgettable memories of him. Wish I could just take a shower and let it all wash away.

Random are my thoughts today. Resistant is the disease I treat. In an endless battle I stand, ready to fight again.

Mo