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

 

Eureka!

As I sat and watched, with awe, Vice President Biden’s summit speech on his vision of the cancer moonshot, I came alive and transformed… I felt empowered and validated. Oh the calamity of thoughts that went through my head. “By golly he’s got it!” Everyone has been there at some point, that delirium that accompanies figuring something out. “Eureka!” I thought. Mine hit all at once, and I have been reeling ever since that day of June 29th but my mind is settling to tell you a story. My friends, I am back, maybe not as often, but I will tell you I never left.

He sat across my stool afraid. He was bright eyed, sharp and thinking through the things I had discussed. “You are going to do what?” he asked, “Inject my sarcoma with a herpes virus?” I remained calm but my passion was bursting out of me because I was excited. This was my idea, an idea that has been brewing in my mind for the last 2 years, an idea that allowed me to use my knowledge to help someone, a clinical trial that I wrote. I don’t know how my patients do it; they find the wisdom, the courage, the generosity and open-mindedness to accept my words. Was it that I danced in front of him telling him about the science? Was it the cancer that inspired him to be creative? Was it his immense trust in me? It did not take him long to contemplate the proposal, to believe as he told me. Enter Subject 001.

Cancer, as VP Biden clearly remarked, is a threat the human race can unite to double the rate at which we make progress in trying to push and propagate the knowledge we have to solve its mysteries. As I reflect on this statement, the one person who comes to mind is subject 001- I get the equivalent feeling that we as humans were able to conquer space to get to the moon and back, I reflect on the day I put my patient on my trial, a trial that was unique in its rights, different and innovative. Subject 001 to me, is the first person on the moon. What a feeling!

Eureka! The day has come for us to find out that I am out of a job, that cancer has been cured, that the world is at peace, that we have overcome our fears and that we have won the war against despair. Yeah sure, we all dream. And maybe that is what makes us achieve our dreams; our hopes, our engagement and our efforts. Perhaps it’s a man standing up and saying, “What’s wrong? Why can’t we do this?” I sometimes recognize how hard it is for a General in the army to will his soldiers to go to battle. This is a war, an urgent need to develop cancer breakthroughs and a strong message for us to do things without submitting to bureaucracy, greed, and negative inertia.

“My patient is interested in joining this clinical trial” the bark of a General that does this daily. The coordinator picks up her task; she is as excited as I am. What drives people to work so hard behind the scenes to actualize a clinical trial still fascinates me. It is this ownership, this dedication that can turn the tables in this fight against this devastating disease… let’s not turn against each other, retard each other’s progress, allow politics and competition to stop us.

Don’t just sit there, do something! Don’t put it off for another day, don’t lean on reasons not to act, but rather seize the moment you are in and become part of the history-changing initiative, become a part of how we revolutionize cancer treatment.

Mo.

Inhabited

“It’s just so hard, Mo!” she exclaimed amidst tears, taking in labored breaths with her oxygen on. I had delivered the news that the tumors again were stable, which just meant they were not growing. “Stable”, I wonder where we come up with such terms and expect our patients to grasp the meaning. Stable, I guess, means: it’s quiet, not dramatic or anything, not out of control.. but then it is all relative. The cancer has not left her body. In each nodule billions of cells divide and multiply, and the CT scan is unable to tell the whole truth of what really was going on.

The conversation took a turn to where she was now sobbing. So lets do this like the movies, where a screen shot would say something like ….

10 minutes earlier

I had walked in and greeted my patient with a hug, she was a big advocate of my program and always supported cancer research. I had gone off on a tangent telling her about a new way of attacking cancer based on a test we were now doing in the cancer clinic identifying potential genetic targets. Here I go again sounding all sophisticated, but cancer growth often is dependent on what we call “pathways” that cause the cancer cells to survive in the environment they grow in. If identified, these signals can also be interrupted and the cancer treated, controlled or stabilized. I had found a potential agent that could be added to her current regimen and I was talking to her about this, when she suddenly started to sob.

“Stable” the word just hung there in the air. Not better, not gone. I felt the hard truth was that she was inhabited by this cancer. It was not going away like we would hope when we deliver therapy. She carries it along with her every day, in her body, memory, and heart. She must live amongst her family and forget that it exists. The oxygen prongs in her nose a constant reminder of the damage it had done to her lungs and her breathing. How does she do it? Is that what is hard?

Her next words, the gist of which was…..”I know the day will come when what you will say is not what I want to hear, that day when my tumor gets the better of me.” She followed by ” You need to blog. Your blogs help, they help me”. She is not the first to reach out to me to write.

What is touching is that she came with a gift to the scientific enterprise that comes up with answers and defines new attack schemas against this un-welcomed inhabitant. This gift, I explained to her, opens the doors to researchers that find ways to understand the alien lurking inside her for future cancer patients.

I held the envelope in my hand and I thanked her for her supporting cancer research: “every breath, every word and every gift goes a long way” I said. She told me that what I said helped. She wanted to share her message with her friends, explaining to them the power of what we can do as a collective group, to fight the rarity of what she has as we define the finest details of this complex disease.

Cancer has a different face now. It is constantly changing; evolving and so is our understanding of it. While this cancer is an intrinsic inhabitant of some of the people I have come to love and respect, never does my mind rest in searching for solutions to the issues that it keeps presenting. It cannot bend the spirit of the patient fighting, the family supporting and of the researchers who strive to impact the lives they so stringently try to save. “Stable”, while good, is far from where we want to be.

I am with you today my friend

Mo

 

Permission

“You’re a good man”, said my patient as he hugged me. He was tapping me kindly on my back. He had waited for over an hour to see me. Wheelchair bound I was saddened when I walked in to see him. I was realizing the end was near as the quote of the series Dr. Who flashed through my mind…when The Doctor says….” I am not a good man, but I am not bad man, I am definitely not a president, or a general or an officer…….I am in idiot with a box and a screwdriver, helping out when I can, learning.” The obvious part is that I am helping out when I can, and the rest of the truth is that I am an idiot passing through with the knowledge I have acquired, and learning as I go. I discovered that my patients have been teaching me something they do very well; teaching me how to die. Here he sat in the wheelchair, he looked ready. What was he waiting for?

I have acquired an innate understanding of death. I recognize it, I accept it, and I too am scared of it. It is a stretch to talk about death like we do about life. Death is more inevitable than life itself yet we tend to dismiss it. We focus on life, and on the aspects that are important to develop a career, an education, a pathway and a life, a relationship and a way to replicate ourselves and bring in more lives to this world. But, as I talk to so many who are ready to transition to death, I tend to think of it as a suspension. That is another story for another day. This man was a little different he made a trip to see me, but I am hiding the ending behind the veil, because it is what is making my statement more powerful. He is making me talk about death to you as intimate, as something there, and maybe we should not be dismissing it. We tend to not want to embark on the journey that challenges our intellect or our comfort, or our narcissism. We do not talk about it objectively or even humorously like we do about a thrilling story in Halloween, not every day, not all the time. We do not talk about it with a bit of comradery, or some spirituality, or some vulnerability? “It” is the way we observe it. Why are we talking about Dr. Who?

He sat there. Haggard. I told him it was time to die. That he should be made “Hospice”, that his cancer was everywhere, and that there is nothing I could do. I was sure of that. My mind fighting the words, “We have had this conversation……why did you come?” He gracefully accepted and hugged me. All the people in the room did that. Why so thankful I thought? How could death today not be so familiar to me, I say goodbye to so many. The relationship being re-defined. The news came the next morning, he died early morning peacefully surrounded by his family. I make sure I always ask how. My heart goes out to his family and I was sad. He knew what he was doing. He signaled that he was dying, as if he wanted permission to give in to its call. He wanted to not let me down, not let his family down he was fighting for those around him. Once the news was out, he let go.

I am just passing through, learning from those who travel into the suspension they go.

Mo

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.