Lessons Learned from a Patient: Me

“Vulnerability is the birthplace of innovation, creativity, and change.” – Brene Brown

Within a week of my diagnosis, my family had descended upon my home and I was wheeled into the OR for a transphenoidal tumor resection. The tumor would be approached through the nose, but my surgeon warned me that there was a possibility he would have to perform a complete opening of my cranium to retrieve the tumor if he ran into any problems. After all, it had taken residence in my sella, wrapping its tentacles and exerting its mass on my optic nerve for at least a few years. I donned the demoralizing hospital gown, stripped to nothing underneath, in the same Pre-Op Holding area where I met my own patients. I felt the warmth of many curious eyes on me as one of my “bosses” from the Anesthesiology Department wheeled me down the hallway to the operative suite.

Fortunately the surgery went well, and despite some emotionally and physically trying times in the hospital of which I will spare the details, I stabilized enough to begin my own rehabilitation at home. Not wanting to take any further time off of residency, I foolishly thought I would return to work the following week… Reality was a different matter!

I want to focus instead on some lessons I learned from my experience as a patient:

Cancer is a powerful label. My nurse placed a stack of papers on my naked knees, which were left exposed by the length of the hospital gown. “And this one we have all cancer patients sign if you agree to allow your tumor to be used for research purposes after it is removed.” I felt the words cut through me as if I were already lying, un-anesthetized, on the operating table… Cancer Patient. Don’t get me wrong, in a way I was relieved to finally have a diagnosis – a reason for all of the strange, nonspecific, non “me-ness” that had been going on for the last two years. But now I was in an unfortunate and (sadly) not all that exclusive club. The label is a powerful one with lots of meanings: worries of discrimination at work (Can she DO this job? Will we need to cover her calls if she gets sick again? Who will cover when she has to see the doctor? Will her vision loss affect her ability to do procedures? I could go on…), the constant question of insurance coverage, and the ever-present reality that, no matter what heroic measures are taken, a cancer de facto can always recur.

We all need advocates. A clear reason for the increased stress levels in healthcare workers, our country’s medical system is complicated and rife with confusing dilemmas for the patient and his/her caregivers. I was the victim of near-miss medical errors, inconsequential things that I noticed due to my medical training and experience with the hospital system. For example, I received PRN (prescribed “as needed”) medications on schedule without though to if I needed them or not (and no, I did NOT need another stool softener when I had diarrhea!). On the flip side, there were numerous times when a delay between my asking for pain meds and receiving them led to out of control pain that was difficult to overcome! While in severe pain, I argued with a cross-covering intern at 2:00 am as to why I needed another Percocet for a budding migraine headache despite the fact that he has been trained as a default to refuse requests for additional pain meds from neuro patients. If I was not trained as I am, I couldn’t have done that.

As a physician, I am always very careful to explain complicated concepts in the simplest way possible, but even that is not always enough. What about when physicians are the patients and concerned family members without medical knowledge are involved? Clear communication about personal values and treatment philosophies is essential among families. The difficult issues need to be discussed before one is unable to speak for oneself.

Human-ness prevails. This is a common theme I have noticed as a motivating factor in many areas of my life. It is why I left a promising job making stuff for people who already had too much stuff so that I could have more stuff, instead following a nomadic climber’s life in a travel trailer for a year. It is behind my decision to go to medical school and my choice of anesthesia as a specialty. When all is said and done, we are HUMAN, and we are “the same”. All roles and labels, socioeconomic or otherwise, are stripped away when one is lying naked on an operating table or fighting for life in the ICU. There I was, suffering postoperatively with horrible headaches, swelling, and constipation, in a room next to a prisoner admitted with acidosis and altered mental status because he had imbibed moonshine brewed in his cell toilet! And I was just as vulnerable, powerless, and dependent on people and the system as the 80-year old grandmother down the hall who had fallen and broken her hip.

Muscle mass is currency. After the surgery, two hospital stays and two weeks of lying in bed at home afterward, the extent of weakness and muscular atrophy I experienced was surprising. I am in my 30’s and fancied myself as at least somewhat athletic… how do elderly, ill patients ever recover from hospitalizations? This highlights the power of the human body to heal (along a relative time continuum) but also the need to optimize health before it’s too late. Abraham Verghese calls it being “better than well”. I was inspired by my own weakness to shift my nutrition and exercise focus towards building, nourishing, and maintaining muscle. Although it took a few months before I was physically ready to pursue this goal, I embarked on the journey and it has made a HUGE difference. At almost one year out from major surgery, I am currently in the best shape of my life! Want to know how I did it? Stay tuned to later posts.

You are loved, even if you don’t know it. A riff on the human-ness theme above, we are the recipients of positive thoughts and loving energy even when we are not conscious of it. When the word got out about my surgery, I received an influx of emails, phone calls, Facebook notes, packages with all sorts of gifts, and even in-person visits from people I had least expected would do so. Some were colleagues, others old friends who had lost touch, and some were acquaintances who have since become better friends. A particular old friend of mine who happens to be an ER physician with a busy work schedule and two kids at home came to visit me one night. I hadn’t seen him in at least a year, but he told me he felt compelled to come in person. His mother had died a few months ago, and he was overwhelmed at the outpouring of kindness he had received from all sorts of people in his life. He said he was majing a conscious effort to “pay it back”, because it meant so much to him during that difficult time. It is amazing the positive energy that exists around all of us at any given moment!

Believe me, I could think of more lessons to add to this list. I will get to all of them on the blog in due time. Enough deep thoughts for now!

This was my makeshift recovery bed in the living room. Note the back pillow, eye shades, ice pack, Hello Kitty and of course loving puppy in the scene.