brain tumor

MRI Slice of My Brain With Tumor

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.

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.

Jeff ReifmanMy 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.

infusion lab view

The View from the Infusion Lab

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.

radiation - preview

Radiosurgery Mesh

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.

Posted by Jeff Reifman

Jeff is a technology consultant based in the Pacific Northwest. Try scheduling a meeting with his new startup Meeting Planner (https://meetingplanner.io), simpler, faster scheduling for work or play and read his series about building it). Follow @reifman on Twitter.

9 Comments

  1. My grandmother (father’s side) had a brain tumor removed, before I was born; not sure if 1940s or ’50s. You can imagine the crudeness of brain surgery then, but she survived and was pretty normal, to my memory. Well, a bit eccentric! … Now via another relative today, I’ve become acquainted with gamma knife and cyber knife technology. Brain tumor surgery without need of anesthetic! Incredible.

    I choose to expect a positive outcome for you, Jeff. You developed this condition at an amazing time when medical technology makes possible what previously we would call “miracles.” Sending positive thoughts your way. Take care.

    Reply

    1. Thanks so much Steve. I can’t imagine what it might have been like back then.

      Reply

  2. Hey man, I go to this article through a tutorial you wrote on Tuts+. We have quite a bit in common, I am also a designer, and in 2013 I found out I had a brain tumor as well. My tumor was rather large (my surgeon was surprised I could function like a normal human and I came very close to being put into a coma and immediately put into surgery) and it was a very strange journey that I’m still dealing with now.

    unlike you, I didn’t have insurance. I was a just starting out as a freelance graphic designer, I had some money saved up but it wasn’t brain surgery money. I found out one morning when I woke up on my couch and my coffee table was kicked across the living room. the first thing I thought was “how’d I end up on my couch?” I went to sleep in my bed the night before. I still didn’t realize at this point anything bad happened until I looked in the mirror and there was blood all over my face and shirt. Of course that was what made me go to the dr that day.

    I didn’t know what to think about it but I mean, who ever thinks brain tumor? Maybe it was just a seizure, or idk, I just never thought brain cancer. It took a few days before I found out and so I had time to tell my girlfriend and my parents what was going on. They were all there the day I found out, I didn’t know how to accept it as I’m sure you felt the same way. It took a minute to realize what I was going through.

    I was having having several seizures everyday, I had medicine too and still I was having a bunch of seizures daily. Everyone around me was upset, and I had to make a lot of tough decisions about my life. I ended up selling most of my things, having to move back in with my parents (which they lived far from where I was living) and leave my girlfriend behind.

    But you know what the worse part of this was? it wasn’t the money, or how upset everyone was (I actually wasn’t that distraught as everyone else was) or leaving my life behind. It was that for a long time I couldn’t find a surgeon that would take me as a patient or that could even be able to take out the tumor.

    Luckily, thank god, not only was I able to find a surgeon to do the surgery but I also was able to get it done for free! I can’t tell you how blessed I felt. This is the reason I bring this up, you mention about the bum and how blatantly wrong it was for someone to have to live that way.

    Thank god that there are people out there that feel this way because if it wasn’t for the support of people I barely knew or didn’t know at all (not to mention all the people that love and care about me whole heartily) I don’t know where I would be today. I would probably be dead, or in some messed up way of living on the street or idk what it would be like.

    Thank god I never have to think about that because of programs for people that need it most, and for the people that stepped out and helped me at my second most vulnerable time in my life. It was a big eye opening situation and I’ll never look at life the same way, I’m still going through some slight things but I’ve been blessed to get through the situation with out becoming extremely in debt, I’m back where I lived before, I’m married and I’m freelancing again. I wish you the best of luck and I hope things get better for you if they haven’t already.

    Reply

    1. Veed, thanks for sharing your story. It’s a fairly amazing, intense read. It must have been very difficult and painful – losing people you care about, struggling to find a surgeon, et al. I’m glad that you did find people to help you and that you are doing well today. It’s obviously made you sensitive to those in need. Again, thanks for sharing all of this.

      Reply

  3. This was a pretty insightful read. I’ve enjoyed your tutorials a lot, and I’m wishing that everything will go well and you’ll have a quick recovery. Glad to hear yoga and mindfulness can provide support not only in our daily lives but also in times of extreme anxiety. Looking forward for your next update

    Reply

    1. Thank you Chris. I appreciate the well wishes.

      Reply

  4. Hi Jeff, I just wanted to pop by and say thank you for the donation to my cause. I read your story about your brain tumour. You are very courageous in my eyes. I think when we are faced with things that have to do with our lives, we all become courageous!

    Reply

    1. You’re welcome Terri. Thank you as well.

      I like your idea – combining this issue under debate http://kuow.org/post/seattle-declares-state-emergency-homelessness with this http://www.seattle.gov/customer-service-bureau/find-it-fix-it-mobile-app . Brilliant!

      Reply

      1. You’ll also like my upcoming story as well. It touches on more of these issues.

        Reply

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