How I Learned to Lead My Cancer Care Team

My care team and I are focused on keeping me alive. And learning to lead them, especially with me having limited medical knowledge, has been essential to helping them keep me alive.

No one wakes up one morning and says, “Hey, why don’t I get cancer today? And while I’m at it, learn all about managing it.” I certainly didn’t.

Like most people, other than having a couple of friends who got the C-word, I knew little about it. I also knew little about biology. In high school, I hated every wretched minute of it, especially dissecting those stinky frogs. I felt woozy at the mere sight of blood, especially my own. I seldom darkened my primary doctor’s door. In good health, why would I? Considering this, I was ill-prepared to take on leading a team of world-class medical specialists.

It all started on a spring day in 2013. With the snow beginning to fade back into the ground and the birds up in the air again playing tag, I had gone out to grab some Mexican food with a buddy. We both had the daily special, chicken enchiladas with rice and beans. Feeling queasy over the weekend, the next week I went to see my primary doctor.

A few days later I turned yellow. An emergency CT scan revealed I had a blocked bile duct. A trip to the ER resulted in being admitted to the hospital. Three days later I got the news, pancreatic cancer, a type of cancer considered a death sentence in that only five percent of those diagnosed live five years. My team of specialists began to gather.

The first member on my team was a surgical oncologist who performed a Whipple procedure to cut out my pancreatic tumor. Soon, he handpicked radiation and medical oncologists to join him. The radiation oncologist zapped me with 30 doses of radiation via a linear accelerator, which was a spaceship looking thing housed in its own bank vault-like building. The medical oncologist, aka chemo doc, gave me a chemical concoction meant to hold my cancer at bay, hopefully for good.

When no one could pinpoint the source of my cancer initially, a skilled gastroenterologist used a special probe to find the one-inch tumor that was next to my bile duct. This had not shown up in the multiple CT scans, MRIs or ultrasounds. A year later, this same doctor found a leak in my reconstructed bile duct. Leaking bile caused me to double over in pain sending me to the ER every few weeks.

A pulmonologist joined my care team after an abdominal infection spread from my pancreas to my spleen and into my left lung. And what would my care team be without an endocrinologist. I developed osteoporosis as a result of my radiation. While lifting a tire I heard, and felt, my back shuffle like a deck of cards. Three vertebrae had collapsed. Now, with the top of my pancreas gone, this same doctor treats me for diabetes.

When I started having mild heart arrhythmia (AFIB) episodes, a cardiologist joined my care team. Thus, over the span of two years, I went from never seeing a doctor to leading a team of medical specialists.

For a non-medical person like me, this created quite the quandary. With the growing complexity of my medical issues, I found myself seeing multiple specialists who seldom talked to each other. Instead, they expected me to tell the others what was going on. Being the bridge between them was not a good idea, but it became a necessity. Whether I liked it or not, or felt competent to do it, I found myself directing my care because no one else stepped up.

(Funny how electronic medical records were supposed to solve this. Only a few of my doctors can access the disparate medical record systems used at other clinics. Each practice has their own proprietary system so sharing information is tedious at best. This is further complicated by the fear of being cited for a Health Insurance Portability and Accountability Act (HIPAA) violation for spilling sensitive health records.)

So, what have I done to be the de facto team leader?

Get Smart

I have had to learn a lot about medicine, and in a hurry. How to pronounce multiple syllabic words replete with Latin roots. Fortunately, with Google, there is so much amazing medical information available. (Of course, you need to watch out for the junk science.) Although I need to look up every other word, for the most part, I can figure out the gist of what is being said. In my view, a smart patient is a good patient. My doctors have told me as much. Get smart.

Ask Questions

When one of my care team specialists tells me something I don’t understand, which is often, I ask questions. And I ask a lot of them. This has helped me engage in my care. Don’t be afraid to ask questions until you get an answer you can understand.

Act on It

Once you have the answers to your questions, act on them. One quick way to lose the confidence of your care team is not to do what they ask you to do. No one, let alone doctors, likes to give advice and have people ignore it. At best, this shows our doctor we don’t care. At worst, it shows disrespect. So, my advice is to act on their recommendations.

Force Your Doctors to Talk

There are times I have found that I simply can’t act as a bridge between my doctors. I am not smart enough, but worse, I fear messing up their message. So, at times, I have had to force, nicely of course, Doctor A to talk to Doctor B and not expect me to try to translate their medical jargon. Like everyone, doctors are busy, but my life depends on them getting things right. If necessary, don’t be afraid to force your doctors to talk.

Stay on It

Like most everything, we get what we make happen, and not what we talk about. Until I see things happening, much like the proverbial dog gnawing on a bone, I stay on it.

Express Gratitude

Doctors, especially cancer specialists, have grueling jobs. All too often someone’s cancer goes sideways, and they don’t make it. Honestly, I don’t know how cancer specialists can go on day after day. So, maybe once a year, I will send a short thank-you note to one of them expressing my gratitude for the care they have provided. This has been a lifesaver when I’ve needed a little extra from them or their staff. Rather than being labeled as that whiny patient, I’ve been remembered as that thankful one. That’s why I suggest patients and survivors express gratitude to their care team.

My care team and I are focused on keeping me alive. And learning to lead them, especially with me having limited medical knowledge, has been essential to helping them keep me alive.