Injured

She died on Saturday evening. A wonderful woman; elegant, sophisticated and intriguing. She had battled her cancer; therapy after therapy, always trusting the decisions being made always trying to remain ahead, never giving up or in, never wavering. Her last therapy I recalled had injured her lungs making it hard to continue. I go back to that moment, it’s not easy to know that our therapies have consequences and sometimes the outcomes are not what we want. Damages from our treatment, whether in the short term or the long term, are now playing an important role in our choices of what we treat our patients with. Why bring this up now?

As most of you have realized I have not been blogging for a long period of time. There are many reasons, which I will not divulge, but I will share one. Over time I have been sharing intimate stories with you. Each blog is truly a touching experience for me and hard sometimes to materialize into words. Yet I found myself doing that time and time again. I had not realized that sharing these stories was cathartic to some and injurious to others. Each blog represents a humans experience and journey with me. Such is surgery and chemotherapy, they are painful, often helpful, and not always curative. I found myself revisiting scars and wounds that made up the utter fabric of my existence. It was hard to put a positive spin on things, as often they have sad endings. It was hard to read them after I had written them. So I decided to pause. In this pause I have been reflecting and rethinking, “how am I supposed to write? What reason do I have to write?”

Today I received an email from a patient who had survived her disease. I am quoting it word for word….please take a moment….to read these powerful words.

“Hi Dr. Mo,

I felt the need to write and thank you. After my last visit this past summer we discussed your blog and that day after our appointment I started to read it. As I sat in waiting rooms all day for my appointments I continued to read post after post to pass the time and couldn’t get enough. I signed up to get email alerts when new posts were written and pretty soon it became what I looked forward to each week. Between all the junk mail there would be the notification that a new post was up and that meant that I had a five minute break from the world.

This past fall I have been extremely busy with my job dealing with lots of traveling and deadlines and sometimes the stress tends to pile. No matter how overwhelmed I would be feeling when I started to read one of your blog posts all the things that seemed important disappeared for that short time.

I tend to worry a lot and am a bit of a control freak I’ll admit, but when I was diagnosed with cancer things that I thought were so important no longer compared to having it. That experience gave me a new way of living and seeing life with a new perspective. No one tells you though that if you are lucky enough to win the battle with cancer that eventually that new outlook you have on life tends to fade once things eventually start to go back to normal. There are times when certain things bring me back to that way of thinking when I did have cancer, whether its a movie, a book or examining my scar that I realize some things I worry about just don’t really matter as much as I think they do. Your posts are one of those ways I am brought back to that state of mind and remind me how fragile and short life is and how the things I was worrying about before are nothing compared to other issues in life and what I went through and could have gone through.

When I had cancer I didn’t share my feelings and thoughts that often with friends and family. I just felt no one knew what I was going through and I was trying to keep everything the way it was before. I also felt like I wasn’t worthy enough to talk about it since I had it much easier than lots of other cancer patients. I’ve noticed since then emotionally healing from having cancer has been a lot harder to deal with. Every post of yours I read helped me deal with those issues and heal in some way. Things I had thought about and didn’t know how to put into words were all there. The fact that you were able to cure me physically and even somewhat emotionally is beyond amazing to me. I have no way to tell you how thankful I am other than my words.

Although I know you don’t write as often now and I know you have good reason since you are a busy man I want you to know that not only are you a great doctor who saved my life, but you are a great writer who has helped me heal. “

Thank you my hero, for teaching me that all injuries heal including the deepest wounds. Your words have touched me deeply. That despite the injury that cancer inflicts on us, there are lessons that broaden our minds and deepen our senses to the ongoing conflicts we face in life. Thank you for opening my mind to the reactions and usually not shared. I truly am touched and indebted to your kindness and your words have far more impact that you can possibly imagine.

Mo.

 

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.

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

 

 

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