It’s Going To Take All Of Us

I stopped by the Cleveland Clinic today to visit with Sarah’s primary oncologist.  I’m trying to bring about closure so I wanted to express my gratitude to him one last time for the care he administered to her almost three years ago.  It gets harder to remember the details of Sarah’s cholangio battle.  Residing in those details are very painful memories so I guess forgetting them might be a good thing.

The Cleveland Clinic is obsessed with cleanliness and has this very distinct smell.  The place is immaculate and the unique odor about it screams purity.  So if the smell wasn’t enough to conjure up the details of Sarah’s treatment, the framed poster on the wall of her oncologist’s office brought back with clarity everything I was no longer recalling.

Below is an internal article he authored for his fellow oncologists, nurses, and hospital staff to read.  It has been circulating within the Cleveland Clinic for a few years now.

I had no idea he had done this and it blew me away when he showed me the article.

 

It’s Going to Take All of Us: A Patient Story

Sarah was young, successful, and loved by her family and coworkers while she worked overseas. She didn’t see it coming when she was diagnosed with a rapidly growing liver mass.

She was transferred to Cleveland for care and was diagnosed with an aggressive form of cholangiocarcinoma (bile duct tumor). Unfortunately surgery was not an option, and her liver did not react well to initial chemotherapy.

Then, genetic testing revealed a specific mutation with an approved armamentarium of drugs for other diseases. Despite appeal, insurance refused to cover the medication; thus, we worked on getting her optimized for eiligibility in a clinical trial using the same drugs elsewhere. The therapy worked wonders for her. The mass started getting noticeably smaller, her energy was back, her appetite improved, and she tolerated treatment extremely well to the point of being back to work – now in Cleveland – full time.

With the exception of the need for travel every two weeks, this family’s life was almost back to normal again. She was able to be there for her 2.5-year-old son, and a productive member of society.

Alas, this was no fairy tale. Cancer struck back with a vengeance. We tried other on- and off-label drug combinations, but with little response. She became more symptomatic and we had a candid discussion about expectations, palliation, and how to spend her remaining time. It was apparent the final battle was not one to be won. She spent her last days at home with hospice care and passed comfortably surrounded by family.

“Throughout this entire time, Sarah’s husband was an unrelenting force, looking up research and trials, seeking options and searching for solutions. He would email us on a routine basis with questions, suggestions, and thoughts about what could be done. In addition, he became active in mentoring other patients and families online about this rare cancer.”

During Sarah’s illness he was off work and completely invested in caring and coordinating for her. I was worried he would burn out and discussed this with him, and I do think he did to some degree. We developed a very good relationship over the few months I took care of Sarah. After she passed I could not make it to her visitation, and when I called him he said that he wanted to give me something, so I invited him to visit me in the office.

When we met, he gave me a framed poster flanked by a couple of their pictures. We chatted for a long time, and he explained to me the reason behind his obsession and persistent focus on Sarah’s cancer. The poster hung on a wall in their home as a daily reminder and motivation for him. Specifically the poster states:

  • Doing research on treatment?
  • Searching for Cholangiocarcinoma survivors?
  • Finding Sarah a mentor?
  • Keeping her actively engaged?
  • Helping her create a new diet?
  • Investigating Clinical Trials?

What are you doing today to help Sarah get well? It’s going to take all of us!

This struck me as being the same thing we should be asking ourselves for all of our patients; taking on every aspect of their care and well-being. It is a huge burden for one person, like him, to do this alone and this is for one person. It comes as no surprise that this is an even harder task for us in oncology to accomplish for all of our patients without burning out.

At Taussig we have a great team of doctors, nurses, midlevel providers, social workers, support groups, nutritionists, etc. At the end of the day, this team is the reason why we can do what we do. The poster sits in my office now as a reminder for me that It’s going to take all of us!

 

Bassam N. Estfan, MD  |  Professional Staff  |  Gastrointestinal Oncology
Assistant Professor of Medicine, Cleveland Clinic Lerner College of Medicine

Cleveland Clinic  |  9500 Euclid Ave. CA50   |  Cleveland, OH 44195  | (216) 445-9449