New Year, New (Long) Post

I just read a book recommended to me by several sources, the more convincing ones being the words of several co-residents, one of the less personal being a Medscape email urging me to read “5 Books by Physicians: Relax Over the Holidays”. It is a memoir by Dr. Paul Kalanithi entitled “When Breath Becomes Air”. In short, it is the story of an esteemed neurosurgical resident who, in the last year of his residency, at the age of 36, is diagnosed with Stage IV lung cancer. It details his life, his accomplishments, his diagnosis, struggles, and possibly most importantly, his philosophy. An avid reader, he spent much of his life philosophizing about the human condition, about life, death, and what it means to have and create meaningful time. His writings conclude with a letter to his infant daughter, and the book itself concludes with an afterword by his wife Dr. Lucy Kalanithi detailing his last days. He passed away on March 9, 2015.

Prior to starting to the book, my senior warned me that it was emotionally “intense”. With a nod to acknowledge both her statement and my present situation, I persisted in borrowing the book from a colleague. And proceeded to read it to completion the next day on the plane to Dallas, TX. To say my senior was right would both understate and undermine the slew of emotions that ran through me during that airplane ride. I related perhaps too closely. From the way he felt about literature to their suspicions about his diagnosis, from the discussions he and his wife had to every word his wife wrote at the end. In their words I felt our past, present, and possible future. With his words, Dr. Kalanthini breathed life into a fear that I try to keep tamped down in the dark recesses of my belly. A fear that every once in a while slithers up with its shadowy talons to clutch at my throat until tears spring to my eyes. I had to stop and put down the book at least a dozen times during my first reading. Though each and every time, a tight, manic knot just under my sternum insisted that I pick the book back up immediately. I cried silently for most of that flight while my husband lay sleeping beside me.

This post is not meant to be just a heavy book review. Outside of my perhaps over-empathizing with a book, this post is meant as an apology to those of you out there still reading this blog. I apologize for not writing on this blog in months. Ryan has asked me several times to write or to tag-team onto one of his posts, but, typically citing exhaustion from work, I refused. My reluctance to share my thoughts began subtly, and I admit I couldn’t pinpoint the reason until recently. Over the past year, I have felt both grateful and lucky to have the medical training and knowledge to be able to interpret and navigate the turbid waters of cancer. As a medical student and then as a doctor, I found a sense of purpose during a confusing time, vowing over and over again to be his rock through the storm. But as the days passed by, as the tumor markers spiked up, as we failed each subsequent therapy, I found myself growing weary of discussing the details of therapy with even close friends, and of offering my opinion on whether I thought the next step would be successful. I now realize this inner weariness grew worse as I delved deeper into my residency. I simultaneously looked forward to meeting up with friends I hadn’t seen in a while but dreaded the kindhearted but inevitable inquiries about Ryan’s health. I didn’t want to admit it, but I felt as though I was constantly on call. I immediately felt (and still feel) selfish and cruel when these thoughts brushed past my mind. I began to give shorter and simpler answers to questions – “He’s doing fine. I’m doing fine. He feels nauseous. We’re going to enroll in a trial.” I feared I answered curtly but eventually grew apathetic to even that. A friend joked that I had become more robot than human, and somewhere on the periphery of my limbic system, I felt the full brunt of his words. This book kind of shocked me out of that state. I hadn’t really cried in months, excepting one brief instance in a hospital call room when I thought Ryan wouldn’t be accepted into this trial. But on that flight, as we neared Dallas, as I pointlessly shoved at my eyes with the edge of my sweater, I started to feel a little more human, emotionally speaking.

And so, I really want to apologize. To you readers for my negligence. To any friends I have brushed off for any perceived coldness. To Ryan for any emotional lassitude I’ve shown in the past few months. All I wanted was to be a wife, and not a doctor. But that being said, I am a doctor. And I am his wife. And I am your friend. And I do have both the gift and the responsibility of being privy to all of the details of Ryan’s health and treatments. He has always wanted to be very public about his condition, as generous with this information as he has been with everything else in his life, and it is not up to me to limit him. If anything, as he grows more tired and weak, it is more incumbent on me to make sure his voice is heard. And please let me say that the last thing I want is for this post to seem as though I am bothered by any compassionate inquirers. It is never a bother. It is actually my pleasure. My main point is that I have been shutting myself in rather than letting things out, I think to the disadvantage of all of us. I’ll try to be better this year.

In the meantime, in the way of a short update, we have been through (and failed) three lines of chemotherapy and instead started a phase I trial at Rutgers Robert Wood Johnson in mid-December. The trial combines a chemotherapy agent (MEK inhibitor) with an immunotherapy agent (PDL-1 inhibitor). This is exciting because of the preliminary results from a sexy phase 1b trial that was presented at the European Society for Medical Oncology conference this summer which showed partial response with combination MEK inhibition/PDL-1 inhibition in a small number of patients with microsatellite-stable colorectal cancer (i.e. what Ryan has). I'll try to explain more in a later post, but in the meantime I’ll put the reference from the press release below for those interested (1).  Superstition usually precludes me from expressing my hope for cancer-related things, but I am very excited and hopeful for this trial to work. All we can ever hope for is more time.

 

-Clover

1. http://www.esmo.org/Press-Office/Press-Releases/Anti-PD-L1-Immunotherapy-Shows-Response-in-Microsatellite-Stable-Metastatic-Colorectal-Cancer-in-Combination-with-MEK-Inhibition