I first sensed something might be wrong from inside the MRI; I saw the reflection of several people staring at my brain imaging and they asked me to clarify my doctor’s name (I’d later learn they needed to call her.) As I got up from the machine, the technician said, “This is Dr. Patel, the radiologist. He’s going to go over your results with you.” I knew immediately this wasn’t good; in fact, it was likely very bad (they usually mail the results.) The doctor informed me that I had a serious problem: a brain tumor that was likely benign, treatable and operable but would probably require surgery and radiation — soon. It only took a second to realize that this meant brain surgery. My tumor, called a meningioma, was about an inch and a half in diameter and already pressing on my brain stem.
This was late on a Friday afternoon of what would be a very long weekend. I had really hoped to avoid brain surgery in my life. And not surprisingly, moments of the next four days would be intermittently terrifying and poignant. Seeing my tumor on the MRI, I quickly realized that my treatment specifics and outcome would depend mostly on its position, size and what vital areas it had grown around and into thus far. I chose not to Google much. I wouldn’t learn more until meeting with a neurosurgeon the following Tuesday morning.[sc:brain-toc]
As you read this, you’re probably feeling the way I used to reading articles like this – a hint of voyeurism, a touch of empathy, and thankfulness that it’s not happening to you. Whatever your experience, I think my brain tumor has a lot to teach you.
Perhaps you’re asking yourself how you would handle this. If you want to be prepared for adversity, I have two pieces of advice: First, get to know yourself and the details of your inner psychological and emotional landscape. Second, build yourself some mindfulness skills.
The two things that helped me handle these first two weeks were my training in yoga philosophy and practice, and more than a decade of counseling. At this point in my life, I know my triggers and pretty much everything that scares me. I know how surgeries and invasive, often impersonal, medical interventions affect me. I had no hesitation acknowledging the range of my feelings and admitting to friends that brain surgery terrified me. “As it would anyone,” said a friend.
I’m no master, but gradually I realized that I have built up a number of skills to tolerate what lay ahead, to calm myself and to face the possibility of death. What does this look like? For me, the practice ground has been moments in yoga discovering the peaceful refuge of a calm mind. It begins simply by noticing the inhalation and exhalation of the breath and following this path to deeper mind states. As part of this practice, I’ve contemplated my life’s meaning and reflected on what it might mean to let go of it.
Regardless, I’ve considered not writing publicly about my tumor in part because I want the option to quietly run away from surgery. If you hear that I’ve fled, I hope you’ll drink a toast to me. If there’s a colony of medical expats somewhere living out your lives free of invasive surgeries and treatments, I’d love to hear from you. I might be pretty happy in your midst.
The truth is my diagnosis could be a lot worse. One friend said, “You got great news yesterday!” She was right. You know what’s scary? Malignant, recurring brain tumors that eat into areas of your brain that you need for speech, thought and mobility. As far as we can tell, my tumor is a fairly well-behaved vegetarian pushing against but not consuming vital anatomy.
Seize the day is a theme in our culture because we never know how long we have. It’s a cliché that’s always abstract until it isn’t. With my diagnosis, the abrupt change in my experience felt surreal. There’s comfort in the surreality until gradually I realized that it’s not unreal at all, this is as real as it gets.
My tumor signaled that it’s time to bring my A-game at life and that means setting priorities better than I ever have. Time and precision matter more. There’s less need to filter. While not surreal, it’s an alternate state of being with heightened consequences and opportunities.
For the most part, I’ve been incredibly fortunate in my life and I’ve had the privilege of worrying about small things for a very long time. Over the last two weeks, I’ve found myself questioning whether I’d miscalculated my work-life balance the past number of years. But while I regret some choices, I realize it’s also important to allow myself space to be imperfectly human.
My neurosurgeon inspired confidence in me that I would survive to live a long normal life; she said I might even be driving ten days after surgery. As such, I’ve been walking a sort of middle path. My condition’s not fatal but managing my tumor will require some serious attention and risk. I am about to become a professional patient for a time – a journey that begins with walking along the path often tread by the very sick and the elderly.
On Wednesday, I spent an hour getting tested in the Infusion Lab where many people go for chemo. I thought for a moment how grateful I am not to be in their shoes — and then I realized that most people would probably not want to be in my shoes right now either — maybe not even some of the chemo patients.
After the nurse inserted an IV, took the first sample of my blood and left me to sit for half an hour until the next sample, I felt the first real wave of vulnerability on my journey.
Looking out the fifth floor corner window, I realized that it was time for me to step out of the rat race and re-evaluate my ambitions for a while in order to take care of myself and heal. How would I stay relevant and feel purposeful? I thought perhaps that writing publicly about my experience would accomplish this. Then my heart broke as I realized I too had internalized our culture’s devaluation of the sick, the old and those that must step away for self-care — people like me.
The next morning, I met with a neuro-optometrist to evaluate my vision. He described to me how precisely targeted, fractionated radiation treatments could likely slow my tumor’s growth where surgery couldn’t reach, protecting my eyesight and safeguarding the flow of blood through my left carotid artery. As I left the building, I felt deep humility and gratitude that such technology existed and that I would be a beneficiary of it. I crossed the street and noticed a homeless person asleep on a bench in the cold, covered only by a thin blanket, his lower legs exposed. My humility turned to outrage: I get high tech radiation treatments to save my life but we can’t afford to find this person a safe place to sleep.
I doubt many of you would wish for that homeless person to be left outside overnight but for some reason these collective values aren’t well realized by our society. I’ve paid into health insurance my entire adult life and right about now it feels like a bargain. It’s never been clearer to me that collectivism has a place in a compassionate society. The failure of our political system to project our values over corporate greed seems to me nothing more than a tumor on our democracy.
Perhaps your political views have convinced you that your skill and independence will take care of you and all people should be as responsible for themselves as you are. A brain tumor in your future or a loved one’s might one day shake your unshakable world view. For the past decade reading articles like this, I too thought myself apart from these experiences while my tumor grew silently inside me.
These first two weeks, I’ve learned from my tumor that the separation we create between the accomplished and the disadvantaged, the healthy and sick, and the young and old is arbitrary and illusory. I hope that my tumor reminds you, as it has me, to appreciate the gift of each moment and be mindful of the effects of your actions and inaction.