Do Not Touch

Observe. Let’s say this is the decision I have to communicate to my patient. I analyze the data in front of me and come to the conclusion that the best therapy is to do nothing. To leave this patient alone and watch their disease rather than interfere. Easier said than done.  I believe this is one of the hardest decisions I have to make sometimes, because we as a society have become used to the idea of doing something. Doing nothing is just not acceptable. Why is that? Pressure from guidelines and treatment algorithms, difficulty in teaching my students who are learning the concept of observation, and exceptionally hard to explain to the patient and the caregivers.

There is an itch to treat. I compare it to an itch because it is hard to ignore.  I feel it.  It builds up inside us telling us to do something. We just can’t stand there and watch. Even when the odds are low, or the statistics are not favorable. That irresistible feeling to do something comes roaring from the inside. Where does it come from? Why do we listen to it? I ask these difficult questions because sometimes I think I should just shake my head and say no, leave it alone Mo. I think your best option is to watch. Allow the disease to declare itself, and show you what you need to do. “I am a good salesman, about to sell you a crappy car” I find myself quoting quite a lot to patients as I navigate this decision. I don’t want my patients to feel abandoned or dismissed.

I have evolved in the way I treat my patients today. When I was younger I was eager to get a treatment plan in place for a patient. I believed that it was important to have that ready to help patients fight their disease. Over time I have also seen my decision-making change. I am more observant, waiting for the right moment to intervene with a therapy. I always  hope I make the best decisions for my patients. It involves engaging the patient, the family and their goals. Slowing down and trying to let the decision be made for me by observing has proven very valuable.

To truly help you as a patient, I want to be in your shoes. So let’s reverse the roles, I am now you. Faced with a difficult disease, being bombarded with knowledge that overwhelms and intimidates.  Yes I can be that person since I am vulnerable to this disease and its effects. I self-reflect to what I hold sacred as I ask the deepest parts of me. I value my quality of life, my sense of well-being, and my vitality to those around me. I do not want to interrupt my life, I do not want to be sick or out of sorts; What would change my mind to accept a treatment, cure?  If that cannot happen, then why subject me to this treatment? What’s the goal? Doctor can you please answer me? What can you possibly offer me that may make a difference to me? Why is it necessary to put me through this? Why do I have to suffer?

Important questions that I ask as the patient and should be asked as a doctor. Can you be me for a change?  In the eyes of this doctor I seek understandings in why I have to present a treatment that may not be helpful to my patients. Perhaps the best treatment is “do not touch”……..reminiscent of the oath I took of “do no harm”.

Mo

 

 

 

Impact

Brace yourself. Get ready. I am about to deliver news about the status of your cancer and whether you responded to the treatment I persuaded you to try. Wait for me, I know you are anxious. Understand that I bring you the truth. Good or bad it is disbelieving. And what I say cannot change.

When looking at the statistics associated with cancer it is more likely for me to be delivering news that my patients do not want to hear but have to. I have also shared moments of triumph and victory with many patients. The impact of this news regardless of what it is, is the truth of the situation. Say it the way it is and help the patient understand. It is my experience which has proven so very valuable. Understanding mishaps and bad decisions in medicine has been a cornerstone in improving my level of the care that I provide to each patient. This is what I teach the next generation of doctors.

What impact does seeing and telling the truth about cancer have on me? Is is the seed of my understanding that grows into a tree. It offers me a chance to improve on what I have already learned and challenge myself to do better each time. I am more than me; I am an institution I teach so many that “art” of medicine. I store all the nuances that occurred that helped shape the decision I made. I draw on so many instances where I could not find a right answer, where I saw a positive outcome in others that helped me make a better decision for each individual. “Practice makes perfect” was the old idiom.

I thank my patients for making me a better physician for the next person I have to serve. We are partners in this reality and it is the truth that nourishes our growth.

Mo

 

 

 

 

 

 

Compass

I am always asked “what if?”  When my patients are seeking the pessimistic alternative to the situation at hand. I have also heard of patients being given ultimatums with a deadline on their time to life. I love it when they break those barriers and surpass the times “allocated”. I have not handled these questions or these situations well. I touch upon my need to provide the right answer when I am asked “what if that happens to me?” and “when will it happen to me?” My tendency is to avoid it, try not to answer it and tonight I wonder why I do that.

Our predictive power as oncologists is very limited. In 2013 I am faced with an enormous speed at which we are discovering newer more innovative therapies to help patients. I find it hard to counsel patients in the future when there is hope for cures and longevity. This is very new for me, exciting and frightening all at once.

How does it feel for my patient? Anxiety is one of the most difficult emotions to navigate. Failing to provide them with the answers they seek creates a conflict that is not readily resolved. Science needs to help us understand outcomes of how disease may manifest in an individual and how it acts. A lot of our therapies are geared towards attacking the cancer head on. Newer approaches are taking into account how we might be able to isolate different individuals based on the behavior of their bodies and discovering better predictors for response to a therapy. I would like to tell my patient “I’m recommending this therapy because you are the one who will benefit from it.” We are clearly not there, and a lot of work needs to be done to help us be better at guiding patients down the best path for the treatment of their disease.

Like a compass leading in a general direction without pointing to a specific street or alley, when asked “Well what if that does not work for me what then?” I simply say – we’ll take it day by day and cross that bridge when and if we get there.

Mo

Half Way There

Light when it strikes a prism splits into many colors.  We are all faced with life’s challenges that shape how we face our daily lives. How does cancer affect the mind of the person afflicted? How does cancer shape the lives of those who survive it? They are clearly not the same as when they started. They just missed death because they were forced to entertain its existence and question their mortality. They rose above the fear of loss and planted their feet firmly on the ground and walked the journey being asked of them. Many struggled, many questioned. In this journey, how do I fit in?

Besides wanting to be a garbage man I have often thought I could be a comedian. I only come alive in front of my patients. I feel the stage, the connectivity and the ability to find in them their strength, harnessing it to help them fight. How do I write to make me sound funny? To relive the moments that I connect with my patients, throwing jokes and fun statements to keep their morale up so that they can clear the hurdles that stand in their way. 

Today my patient cried and giggled. She was half way there. A treatment with a good outcome but very long nonetheless. When I walked into the room she sat hidden behind the curtain calling out that she was not crying. I could hear the choke in her voice. I pulled the curtain back and started my act.  I pulled the stool in the room and sat close reaching inside of me to find any word that would make her laugh. Comments on my beard that I was attempting to grow, on why she did not bring her cat with her and how her brother too tries to make her smile. Between tears and laughs we reformed the bond. I could see her pick herself up from falling down and saying ok I am ready for the chemotherapy. I thought when she survives this and moves on, will she remember how many laughs we had? Or would that be a forgotten memory? 

When I see my patients survive their disease, these laughs that helped them through tough times solidify a trust in me that make me believe I do make a difference. I hear it enough times and I share with you honestly and openly that I too forget. I forget their struggle, their fight.  Perhaps it is the joy of walking in and telling them that they are still disease free and that they are winners that makes me forget. I see in them a wisdom that was not there when they started, a strength that I know makes them face life differently and knowledge that they just beat cancer. 

Why would I want to remember how they struggled? When they are truly the winners.

Mo

 

 

 

 

 

 

Befuddled

Cancer is a crippling disease. It frustrates us. It spares no one when it presents itself to us. For those watching and those it involves. Minds struggle with it. Others find it fascinating. It can teach you everything from finding the will to fight, to understanding the human struggle with death, to elucidating all the facts about how our cells behave. I am wrestling with this frustration today, because I could not explain what was happening to my patient. It was like entering the twilight zone.

I sat opposite her staring in disbelief. A puzzle. Baffled. How could this be? I thought. It was not bad news. It was not good news. It was news that did not make logical sense. I took refuge in the words of those who taught me “treat the patient not the numbers”. There she was sitting looking absolutely great. The treatment she was getting was working for her. But her blood work spoke something different. Impossible; now I know what that word means. How could that be? I kept asking. I left the room walked to my computer, and started asking others what they thought. The more minds I could harness the better the decision I made felt. This is where the proverb of “too many cooks spoil the broth” failed. Here is where I needed as many cooks as I could find. This is how our collective, collaborative consciousness comes together to help me understand what I had not been taught yet.

Some have asked how we do it. “We” the ones who are watching this process. It’s 9:52 pm tonight and look at what has captured my mind. What has me thinking, contemplating and wondering. It’s this curiosity that cannot be destroyed. It makes me walk in places no one dares to. It gives me a depth of understanding that helps me see more about human beings and life than I could possibly explain. I try and I am stumped. So I sit and watch the sun set unable to explain how, knowing in time that someone someday will say “well the earth is just revolving around itself” and that is how the sun sets.

Mo