My first tryst with Neurosurgery..
It was March 2016. I was on a plane ride back home from Miami to DC. As I landed and turned my cell phone back on, a very cryptic text message popped up from my dad asking me to call him as soon as I could. He never did that. If he needed something, he would typically either call me straight or leave me a message asking me to get to things when I could. This didn't sound normal. Somehow, I got a queasy feeling that prompted me to call him immediately even though there was noise and chaos around with people deplaning around me. I called him right away. That’s the first I heard of him being diagnosed with a brain tumor. I heard him talk… The good news was it wasn’t malignant. The bad news was it was massive and needed a full-blown surgery.
On my ride back from the Metro to home, a gazillion thoughts kept swinging around in my head. What all would it entail for us to get his tumor resection done? Was it a safe surgery? Was the doctor a good one? It the hospital a decent place to operate? What risks could we expect? Would he be OK? What if he survived and there were deficits? What would this mean to us, as a family? How much money would this cost? When would I need to travel to be around my family? What all would we have to do to ensure it could be a smooth and well planned process — for him, my mom, and our family?
That’s when my rendezvous with meningiomas and craniotomies and neurosurgery first began. I had never paid attention to neurology or neurosurgery before and wondered about how fascinating brain surgery could be! I had studied a little bit about the brain, its anatomy, cognition, and its impact on human behavior as part of my Psych Major. But, who knew all that information was going to come in so handy now.. So glad I understood the brain a teeny bit more than the others.
The next few weeks from finding out about his tumor until surgery were tough as we processed it all, as a family. The fact that recovery could take weeks, potentially even months, and needed some extensive planning especially around figuring a caregiver and support plan for my parents was plenty of work. There was a lot to figure out.. Those few weeks were busy; somehow, I now seem to think they flew by quickly.
The D-Day arrived. An army of family arrived to support my mom and help around with taking care of things. The tumor resection was about 80% successful and surgery mostly uneventful. Recovery was fairly smooth barring aside some ad-hoc hiccups here or there. We were feeling pretty grateful. A few weeks after though, rather abruptly, there were post-op complications and then, it was a clear downhill road from there..
It was almost as if there were new branching health concerns and issues looming every day, causing us a different problem to solve every single day. Lots of retirement savings were being liquidated to afford good medical care. Home health aides had to be hired. Different rounds of close family members were taking turns to help, including my sister, my husband, and myself — at times, making several international trips to help both my parents deal with this crisis and its aftermath.
They say surgery is traumatic. What no one ever warned us about was that it isn’t traumatic just for the patient but the caregivers too. In fact, surgery is almost always a package deal: physical, financial and emotional stress. For Dad, there was tremendous physical pain recovering from a major, eleven-hour, complicated brain surgery, given a tennis-ball sized tumor that was closely enmeshed with his optic nerves. (For my Mom, my sister’s and my family), it felt like we were definitely on a very long and turbulent flight. But, that flight had to land somewhere.. right?!
After about a nightmarish six months, a couple more surgical procedures, and several weeks of hospital stays, there was finally some element of hope and normalcy returning in our lives. Dad had started to look like himself even though with several lingering cognitive deficits and personality changes. In fact, all of us in the family underwent changes.. changes to our roles, changes to our temperaments, our mental make-up, our identities. We’d all learned and changed so much in a short span of some months.
As I ponder over on my first-hand account of seeing someone in my family go through a serious illness that required surgical intervention, there’s a lot that, I think, could have been done differently. To add to that, my perspective is strongly based on the fact that healthcare in India and the western world is very different. I’ve also been an ardent fan of Grey’s Anatomy, a popular American medical drama series; obviously a very hunky-dory version of medical reality and the healthcare infrastructure, but even with medical fiction, they’ve done a good job at educating the common man with various medical topics.
Here are some of my reflections based on my experience and general knowledge of healthcare systems in India and US:
First, I think a very critical aspect of patient care is counseling the patient and their family along with working on expectation management. Unlike Grey’s Anatomy, where we often see attendings showing all the compassion in the world to their patients, that may not be entirely true in real life. Attendings usually come and make fleeting visits once all the grunt work has been completed by their residents or nurses. In fact, it is mostly the residents or nursing staff, who spend more time with patients and make sure they’re showing the right amount of empathy and care toward the patient and their families. In our experience, we felt we were at a loss, as we had no awareness of what to expect after Dad’s surgery. We didn’t know that fluctuating electrolytes or incontinence or sudden onset of rage or random episodes of depression are all part of post-op reactions. I wish we had known! If only there were better communication or time devoted from the surgical team to tell us what to expect or address our seemingly-silly questions, we could have done so much better. It’s a shame we had to jot down all questions for the 30-second flying daily doctor rounds. That too, if he swung by at a time, when we were away for even a couple minutes, in the toilet or to grab a quick coffee, too bad — it was all our loss. We had no real means to reach the surgical team unless they came to us. We were often made to feel so small, as if our questions were irrelevant or stupid, maybe because it was same shit, different day for them, but for us, it was a once in a lifetime thing.. it was not normal and a friggin’ big deal. It was so not stupid. Just as no question ever is!
Second, knowing that we have an approach mechanism in place if and when we may need urgent medical attention can itself be so comforting. Unfortunately for us, the only way to do that was by going to the ER. Even knowing that we have a direct line of access to the doctor’s team can help reduce the mental burden so much, especially for a post-op case. Sadly, that is not always true for most of us. Many doctors are not as approachable as we may like. On this front though, I’ve been so impressed with the neurosurgery team on Lenox Hill, a Netflix medical docu-series, that has shown some pretty powerful medical stories that have definitely resonated with me at so many levels. One of the reasons their patients appreciated their medical support was due to their strong doctor-patient relationships.
Third, another aspect of patient care that I saw beautifully depicted in Lenox Hill was how the surgical crew took a few moments to meditate and almost as-if pray together as one team, during pre-surgery, to remind and awaken themselves of their one responsibility: to help their patients. To remember that there was a person lying unconscious on the table and that their life depended on surgeons’ medical precision. That what was needed was a lot of their instinct and subjective judgment that could either save or destroy the patient’s and their family’s lives. It was so reassuring to see the surgeons say the patient’s name, their history, diagnosis and the surgical plan right before starting, so that they could be reminded in that very moment why they were all really there. That with reviewing the checklist of banal OR routines and procedural steps, they didn’t forget that the patient lying on the operating table is an actual person, a real human being and could die or suffer lifelong damage in one instant.. if the surgeons made even one teeny-tiny mistake. Seeing them warn each other about safety procedures or whether it was the right side or left that was to be operated on gave me so much more trust and a new sense of respect in those doctors. They take their jobs seriously! They know every move they make matters. They realize that they’re impacting not only the one life they’re operating on but many others, outside the OR, as well. This quality may not be common in all doctors or medical staff but there can always be those exceptions who can prove to be the difference makers, right?
Today, as I reflect on my Dad’s tumor incident, I feel like I underwent a strong sense of loss and helplessness. In fact, it was some sort of grief even..as we were accepting the changes in all our lives, not him alone. When I think back in hindsight, I wonder why I didn’t consider seeking therapy to help me address my oscillating emotions. We all could have..would have.. should have! A couple years ago, I stumbled upon Atul Gawande’s Being Mortal. Reading that, I learned about his personal struggles, stories, and the philosophy of healthcare, in general. Honest confessions and perspectives around serious, terminal illnesses, and death from a leading (neuro)surgeon enabled me to better appreciate geriatric issues, palliative care, and the ultimate and most inevitable truth of our lives: death. It’s also important that caregivers try to find some time-off and the right channels to de-stress. It is critical for their well-being!
I’m not saying I’m all enlightened today and have achieved my nirvana. Absolutely not! I’m as fragile as most of us are on this topic. But, I do believe I’m not succumbing to this worry as much as I used to. My hope is sincere and simple: to share my personal story and some resources that I found helpful with those who, like me, worry about aging parents or loved ones who’re struggling with serious health conditions. I think life is beautiful. And, it is our freedom and choice to see it the way we want to..I’d like to close with a happy thought that keeps my spirits high.
“I suppose there are a lot of reasons to be jaded or sarcastic or bitter in life, but I hang on to the reasons why life is beautiful.”
~Kelli O’Hara
Disclaimer: As such, this is an account of my own thoughts and feelings around my father’s illness and on the topic of healthcare. It does not represent any professional or medical reviews.
