Understand

Death does not put an end to everything. It inspires feelings, questions, and gives perspective. People ask me how I feel when I lose patients. Do I feel sad, angry and defeated? I have walked with my patients down this path and returned alone. It does not end there. Death does not end things. Death is not the last thing.

From each patient I keep something with me. Patients help me gather knowledge that flows stronger than a river and wisdom that propels others who have to walk that path. The path remains uncertain but the journey of those we lost refines and paves the way. There is a certain enlightenment that comes from this that I hope to make you all perceive. What started small in the beginning, with the trust of a few, has become an organic tangible construction of the science needed to move us forward. 

 “A bend in the road, is not the end of the road, unless you refuse to take the turn”. Families always take the turn. What’s the alternative? To go on grieving what could have been? Do we live in our memories? When you meet the loved ones of a lost patient, trudging their way through the rest of life, do you wonder what drives them? I am always touched and humbled by what they say amidst their sadness and fear, their feelings of loss and grief. They say prayers for other cancer patients, and a shout out to me, “You go get this, Mo”, “You figure this out”, and “You find out why?” These words push me on, make me get up, make me see what still needs to be done. 

Memories ebb and flow rubbing into our wounds and heightening our suffering. At times they gather together, like a swarm of locusts they invade, leaving nothing behind: a loss of meaning and loss of purpose, a desolate place. Out of it emerges a new beginning, a new start, that puts the bounce back into our feet and we are alive again. Understand, that is how we make our memories live within us without their crippling effect, and those we have lost can show the way for all of us to succeed.

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.

Yell

Her face was ashen as she walked into the clinic room. Her movements were slow, and deliberate. She was clearly significantly fatigued. Not the bubbly person I knew her to be 2 weeks ago. Clearly something was amiss. I was walking to see another patient, but my critical eye could not dismiss that my patient was in dire distress. When it was her turn to be seen, I entered her realm. She was lying on the examination table with a blanket up to her chin, the blood pressure cuff was beeping a bunch of numbers at me, and the room’s neon lights were turned off to make her more comfortable. I stood at the foot of the bed and looked deep into my patient’s eyes. Examining her as I would, fully present, I noticed as my coordinator scurried to remove the cuff from her arm and get her papers together. My patient was in trouble.

I looked deep into her eyes. She was participating in a clinical trial offering a new agent for the treatment of her disease. It was clear to me that the treatment had taken its toll. I was saddened and angered by her ill physical condition, but how can you show your anger to a person you highly respect. Someone who had taken a chance to help herself and so many others by participating in a trial that might define the next treatment for the generations to come who are plagued with this disease. I asked her husband “How long has this been going on?” He replied “for the last 10 days. She has been sleeping for almost 18 hours a day.” She was fatigued to the point it was interfering with her life. “I did not want to bother you”, came slowly from her lips “I just pushed on wanting to make the treatment successful”. Ah, that common feeling of wanting to do more than what is expected. Here is what I have to say to that, to the patients who feel they do not need to reach out when they are in trouble. Don’t be silent, YELL. Let me know, make as much noise as you need to, your voice is always heard, you are alerting me to things I want to know and things I can help you with, averting a potential danger. Don’t wait, don’t ever think you are a bother, and don’t ever imagine you interrupt or annoy me; I want you to be an honest messenger to an event that I can help you get though. You are a beacon to help me, and I am the lighthouse that shines the light to help you through these troubled waters. YELL.

We talked through humor and we made a laugh of it, I guess that is the way to express your anger to those you respect. “I am such a Dodo” she said, “I just did not know that I could bother you even with this”. Her husband’s eyes filled with tears as he realized he could have intervened earlier. “It’s ok” I said, ” I’m an oncologist more is always better, let’s hope it kicked your tumor’s $@# for the trouble it has put you through”. That brought a few cackles. I saw what I needed, the relief that she had shared her trouble and that once again it was not her responsibility for the decision. It was mine. I reassured her, asked my coordinator to check on her every other day; till I knew she was out of the woods. I said “it’s not your decision any more to just not tell me, I am going to have someone call you to make sure you get out of this, safely”.

My friends, yell, when you think it does not count, yell and you will be heard. It’s my job to make sure you live your life, and not suffer unnecessarily. Yell. I want to know how I can help you. I will always be there, and with the knowledge I have I will guide you to safety.

Mo

Is It a Choice?

The research coordinator sat next to me and said “his insurance will only approve a phase 3 or phase 4 trial, and while this trial you are offering him is a phase 3 they have denied it anyway!” Frustrated she also added “we are in the process of appealing this, but it could take up to 30 days.” I stared into the cubicle I was sitting in. I never check which insurance company a patient has nor do I understand the “what is allowed or what is not.” I had met my patient a week ago and I counseled him with options that I felt would best serve his treatment and his goals. How do I explain that his recommended treatment is off -limits due to insurance, and we need to consider an alternative? Why should I? I honestly did not want to.

I have practiced medicine in many different systems. In Jordan, recommendations for treatment are often coupled with a price tag. It is one of the big reasons why I do not practice there, and feel that a health care system does not need to discriminate in care based on a patient’s financial abilities. I have blogged about this hindrance previously and I do this again as I feel passionate about patient care and where it may be heading.

In the modern health system of seeing patients in 20 min, we have to discuss an incredibly difficult and complex disease in the matter of minutes with our patients. The industry of medicine has truly become too demanding and very bulky. From a physician perspective there is a need to understand the exciting number of breakthroughs in cancer research at the same time present unbiased informed consent to patients explaining treatment options and offering a true reflection of what knowledge is out there. This is coupled with an explosion of technology, electronic medical records systems, the almost immediate availability of information, test results and expectations. The physician now faces the dilemma of appealing denied insurance claims to render his decision for the selected treatment “allowable”.

Patient’s choices are limited by which insurance they belong to which clinical trials are available to them for cancer care. It’s the art of medicine to help the patient navigate such hard choices and ensure a good decision is made. I am a believer that everyone should have health insurance, however in our system it appears that some are better than others reminding me of the novel “Animal Farm.”

My patient looked at me and said, “I want what you think is best for me in the treatments you have outlined for me.” This is a huge responsibility to walk a patient through a network of decisions influenced by the many changes taking place around us, yet we are being asked to do this in a very short period of time influenced by the politics of insurance companies. So I am left with a simple question today as I blog, is it a choice?

Mo

 

 

Cage.

It’s about a mile walk from my clinic to my office. A small part of that walk is outside. Grey was the sky, a cold wind penetrated my shirt but not enough for a jacket I thought. A light drizzle of rain. I guess this is the “Ambience” of this blog. I sighed deeply as I walked, the conversation of the day speaking inside me. I could feel each step, each bone in my body ached. And I walked distracted.

“I am sorry but your insurance will not accept me treating you on this clinical trial.”

Shell Shocked.

I did not go into medicine to be forbidden to treat someone with what I felt would be the best option for them. I imagined myself a rare bird stuck in a cage realizing the boundaries of the system that I existed in.  My wings unable to soar. My perceived freedom now defined by outward forces beyond my control. I felt the bars close in and force my decisions. A slave to the system that I have now discovered is not  easy to navigate. “This is all I have to treat you with”.  I did not even want to be in the room anymore as I spoke to this human. Where did my compassion go?  I longed for the freedom to decide the best treatment. I wanted to soar and my anger rattled me.  I flew into the bars wanting them to bend. I felt the imposition of the system. Where are the tools to help my patient today?  This is coming from someone who does not take “no” lightly.

I walked to my office, and talked to my boss. An incredible man to say the least. He let me talk. Like a cushion he absorbed this shock. This is not the first time that this has happened.

I have always liked the political cartoons of the past. They speak volumes in pictures. Intelligently portraying the issues of the time. I sat and read some of the “Far Side” cartoons on my couch. Humor a mature psychological defense mechanism like an old teacher showing the way.

Here is my picture for you- “Imagine”:

That despite this cage; this bird today sang.

I still found a way to deliver my care.

Mo