I met the most difficult patient of my career not quite two and a half years ago. After working for more than 11 years in cancer medicine, ranking as my hardest patient is no easy feat.
Joe initially presented with vague symptoms. Some abdominal discomfort and bloating had, over the course of just a couple of weeks, progressed to the point of debilitation. By his first visit to our office, he could no longer work.
When I met Joe, he looked beaten down. Answering my questions at his initial visit, he was exhausted. Before coming us, he had been diagnosed with incurable stage IV colon cancer. He knew he had an unsolvable problem but was hoping for the chance to feel better than he did.
Joe was just 37-years-old, accompanied by his even younger wife. They had left their two boys at home with a sitter to make the trip. I wish I could tell you we found a loophole and that there was a shot of a cure, but we didn't. Joe was in bad shape. He started chemotherapy that same week.
During his second visit, I somehow managed to give him even worse news than before. Some pathology had testing come back, and it showed a rare mutation. There's something worse than having incurable stage IV cancer, and Joe had it.
Things had gone from bad to worse. Joe and his wife were understandably distraught but, they remained remarkably composed. They expressed that they were glad that he had already started treatment. And they were happy to know that we had a plan B—a clinical trial intended for patients with this rare mutation—for when his current treatment stopped working.
After a couple of doses, Joe started to feel better. Not cured, the cancer wasn't going away. But, Joe was able to get to get back to work and even started running a few miles at a time again.
Then, about a month into treatment, Joe and his wife learned she was pregnant. They called in a panic, worried that the chemotherapy would affect the baby. They were relieved to learn it wouldn't.
For a few months, Joe's treatment went pretty well. At every visit, he looked a little better while his wife's belly grew a little bigger.
But, we all knew what was coming, Joe included. In the fall, it came. A CT scan showed that the chemotherapy was no longer keeping things in check, and Joe started to feel worse.
He began treatment with the clinical trial. But, the treatment couldn't keep pace with the growth rate of the cancer. He started to show signs of liver failure, and the trial had to be stopped.
At that point, Joe's wife was just a few weeks away from her due date. He continued to decline, and once it was safe, labor was induced so that he could meet his third son. Joe died less than a week later.
Joe was not my most difficult patient because he was only 37, I've had far too many patients who were his age or younger. It wasn't that he had young kids or even a pregnant wife. Sadly, those weren't firsts either. There have been other healthy patients who exercised, were highly intelligent, and who were overall nice human beings.
What made Joe my most difficult patient was how he coped with his final nine months of life.
I've had the chance to witness how thousands of individuals and families handle a serious diagnosis and the strain it puts on relationships.
When they are the patients, even seasoned medical professionals can have unrealistic expectations for what modern medicine can accomplish in the face of a poor prognosis. Or, on the flip side, patients who cannot be cured can feel hopeless and lose sight of any remaining good in their lives.
I've had a lot of time to consider how I would want to act and what I would do with my remaining days if I were given the diagnosis I've so often given others. Most of what I've come up with are slices from what I've seen in my patients — being realistic, honest, grateful, and happy. I hope I would enjoy my loved ones, continue to live my life, and benefit from the relationships that I had built.
Joe was the embodiment everything I hope I would be if I were faced with the same circumstances. It's easy to feel pity or empathy for a someone, particularly when they have a desperate situation. But when you see yourself or who you hope to be in someone else, it's a different kind of connection.
Joe had some of the most dramatic moments you can have in any life crammed into a few months. He enjoyed the little improvements and moments of good news but never denied or glossed over what he was facing.
His relationship with his wife was remarkable. In the cancer world, we often receive calls or messages from family members without the patient's knowledge. Sometimes they want to discuss a prognosis outside of the presence of the patient or to secretly tell us their loved one isn't eating right/losing weight/taking their medications correctly.
But with Joe and his wife, everything was out in the open. She was engaged and with him at every visit, but she always allowed him to take the lead in his care. The immense mutual respect they had for each other was admirable.
The way that Joe approached his diagnosis and final months had a long-lasting impact on his family. He and his wife knew that as their baby got closer to joining the world, Joe had less time remaining in it.
But, his wife will still tell you how great those last nine months together were. Now, over a year and a half later, his wife and boys are thriving and continuing his legacy of appreciating the moments life has to offer.
I'm often asked how I can work with cancer patients, the assumption being I spend all day seeing tragedy and giving bad news. On some days, that's true. But, I also have the privilege of seeing how people can live well, even when life is limited.
In practice, you will have patients who you relate to more than others. Ones you will think about long after you leave your office or hospital for the day, and even for many years to come.
But, that's not a weakness or an indication that you don't care enough for all of your patients. Having those who affect you more than most can change your perspective. They can make you a better provider and improve your own life.
Joe certainly helped me to do both.
[While Joe's name was changed for this article, my telling of his story is done with the support of his family. It's a story that deserves to live on, as it does every day in the hearts of those he loved.]