Some of the world’s leading cell therapy scientists and doctors were recently at the Vatican to participate in a conference focusing on pediatric cancers and genetic diseases and how science, technology, information and communication can streamline medical care.
Up until a few weeks ago, my interest in this conference was strictly professional.
But now it’s personal. As I write this, I’m no longer just a physician. I’m a patient, and I’m waiting to hear if a lump I found was benign or malignant.
I am suddenly standing face-to-face with a word we all dread – the C word. Cancer. In my case, testicular cancer.
I’ve spent half of my 50 years in the health care industry. I’ve treated patients at Johns Hopkins University; I’ve operated on babies with glaucoma; I’ve worked with some of the nation’s largest insurance companies and employers to help them improve their health services and costs.
But I’ve never been a patient before.
Like all my colleagues, I was taught in medical school to be a practitioner, and I thought I’d seen just about all there was to see – until this happened. Nothing prepared me for this.
I know what it’s like to have a scalpel in my hand, waiting for the patient to go to sleep while I think about everything I need to do between the first incision and the final suture, and all the things that might go wrong and how I will approach any complication.
But I’ve never been on the other side. I’ve never known what it’s like to hope for the best but fear the worst as they place the mask over my face. I’ve never been the one putting all his faith in the person holding the scalpel, knowing all the things that are going through his head and aware that I’ll be unaware of anything that transpires until I wake up in the recovery room.
I’ve guided many patients to make good decisions about courses of treatment, but ultimately they were their decisions. I’ve learned in the past few weeks that patients have to make a lot of uncomfortable decisions during a time of crisis, when they have all sorts of scenarios running through their heads about what may or may not happen in the future.
I’ve learned that unpleasant thoughts will bubble to the surface, and that they will push a patient’s anxiety level into the red zone. Is it benign? Is it malignant? If it’s malignant, has it spread? If it’s spread, what then? What about my wife? What about my two daughters? What do I tell my dad who is 86?
I never learned any of this at Johns Hopkins, but I’m learning it now. And it’s a lesson I hope I never forget. Every cancer patient goes through the journey of discovery, anxiety, diagnosis, fear, treatment and then more anxiety. I’m barely halfway through that journey, hoping to hear the word “benign” and dreading the word “malignant,” and I’m beginning to understand.
I’ve learned that it takes composure and courage to sift through all the options before making a decision, and that once you’ve decided, you have to trust your gut and believe you were right. And you need to have absolute trust in the doctor who helped you choose, because this is not a good time for self-doubt and mistrust.
And another thing I’ve learned is that I’m lucky. When I discovered the lump, I went back to Johns Hopkins, where I studied and practiced and where I continue to have many friends and colleagues. It’s the mecca of medicine, and the team including, Dr. Pierorazio, my surgeon, that is treating me is the best in the business.
I’m lucky because it wasn’t hard to coordinate things before surgery. I didn’t need to get referrals. I didn’t have to wait on the phone for authorizations.
And I’m especially lucky that I don’t have to worry about the cost of all this, because I know there are people in my situation who do.
I can’t imagine what it must be like to check in on the day of surgery and have to answer questions about advance directives and proxies and DNRs and next of kin – and at the same time have to make sure you have a credit card on file in case your insurance doesn’t cover everything.
A lot has been said about pouring hundreds of millions, even billions of dollars to find a cure for cancer. Vice President Joe Biden, whose son, Beau, died of brain cancer last year, has taken on the leadership for the cancer “moonshot,” and former Napster founder and Facebook president Sean Parker has donated $250 million to study immunotherapy as a possible avenue for a cure.
So doctors can tell that to their patients and give them hope. But right now, what’s more important is that they tell their patients they care. It’s called empathy, and I’ve learned a great deal about it in the last few weeks. I hope I never lose it, and that I’ll have it for decades to come.
I woke up a few days ago to find a text message on my phone. It was from Dr. Sanjay Gupta, CNN’s chief medical correspondent. He’s a dear friend of mine, and he wrote:
“I’m at the Vatican. I’m going to interview the Pope. I’ve been thinking about you. What can I do?”
My reply was short and from the heart:
“Say a prayer. Light a candle. Get His Blessing”