The Morning of My Brain Surgery

The anesthesiologist introduced himself with a warmth and kindness I hadn’t expected. He asked if I had any questions and explained what would happen next. Then, he asked if I was ready and motioned me into a wheelchair, transferring my IV to a hook above me. He asked my friends to follow as he wheeled me out and down the hall. He showed them the exit and I turned to watch them leave. He wheeled me down a hallway, past other operating rooms, and finally through big double doors into mine.

The OR was larger than I expected, and cold. To my right, several women in scrubs and masks were preparing equipment. I told myself not to look too closely. Later, I realized one of the women was probably my surgeon. Ahead of me was an even larger space with an operating table in the center surrounded by hovering monitors and more equipment. They helped me onto the table and asked if I was comfortable. I was cold. They responded by placing what felt like heated air pillows around me. I began to shiver and told them I was very cold. They started to move more quickly. That was my last memory before the operation.

The Week Before My Brain Surgery

The prospect of major surgery at times focused my attention inward, but it also offered a gift of deeper awareness of my own privilege, and empathy for the challenges faced by others.

My friend Kerry had offered to come to Seattle from Boston to be with me through the surgery. She did so with the blessing of her pregnant partner and their toddler. When I told her I’d be visiting Orcas Island for a couple of nights before the surgery, she asked me about my friend Tiffany who lived on nearby Lopez Island. They’d met many years previously when we visited Tiffany at her home there but I’d not stayed in touch with her.

Tiffany Ferrians and Keaton Farris.

Tiffany Ferrians holds a portrait of her son Keaton Farris. Credit: Ian Terry / The Herald

Alone at dinner on Orcas, I searched for Tiffany on the Internet and found her public Facebook page. There was a photo of a person I assumed was her twenty-something son, Keaton, but something was wrong. It appeared that something serious had happened to him.

On April 7th, Keaton died in a jail cell, essentially killed by prison guards. They had placed him in solitary confinement and left him without water for days until he died. I reached Tiffany that evening and we spoke for two hours. There was nothing I knew to say to account for her loss. She shared concern for my surgery and I expressed how my heart had broken for her and Keaton. I tried to just listen. There was a small possibility brain surgery could kill me, but Keaton’s life had already been unjustly taken from him. Tiffany’s life was forever changed.

Similarly, a new friend Rob faced likely death from hepatitis C within the next two years. He was a kind and spiritual volunteer at my yoga teacher’s Portland studio whom I’d gotten to know over the past year. Medications can cure hepatitis C, but they cost more than $90,000 in the U.S. Unfortunately, Rob’s state health insurance won’t pay for these medications until he’s nearly dead. Gilead, the makers of the life-saving medications regularly run ads entitled “Forget Me Not,” but they have forgotten Rob and people like him; their ads are for the wealthy and the well-insured.

On the eve of my surgery, I sent Tiffany a check to help her worry a bit less about money while grieving for Keaton. Similarly, I sent checks to cover the expected medical costs for Rob’s treatment. Other friends of his weren’t sure if we would need to send him to India to obtain affordable treatment or if we could obtain the medications from there. I wrote out checks enough for either path.

My upcoming surgery frightened me, but the paths of Keaton, Tiffany and Rob gave me perspective and left me with gratitude for my access to the care required for my tumor. Their experiences challenged me to accept the possibility of a difficult outcome and to face my fear with deeper perspective.

The Day Before

Shower Caps with Skulls and Crossbones

Lady Bugs or Skulls and Crossbones

My surgeon’s scheduler had explained I would need to shower with antibacterial soap the night before and the morning of surgery, but I would need a shower cap to cover the magnetic dots my surgeon would stick on my head to guide her in sawing open my cranium. My pharmacy had one cap with ladybugs and one with skulls and crossbones.

jeff reifman brain surgery MRI dots

MRI Dots the Day Before Brain Surgery

The day before my surgery, Kerry and I went to see my surgeon. I showed her images of the shower caps and let her know I chose the ladybugs; the skulls and crossbones just hit too close to home. I brought a picture of Harry Potter and asked if she could just do a scar like his. She laughed and said, “No.”

She placed the magnetic dots on my scalp and sent me off to the MRI. This one was more difficult for me than the last as we had decided to try it without anti-anxiety medication. The tech gave me an IV of gadolinium, the material that would highlight my tumor. After a couple of attempts, I sat outside the machine trying to sort out how to overcome my claustrophobia while the tech worried the gadolinium would dissipate. Ultimately, he invited Kerry to come in and hold my hand to help me through the test.

Despite my anxiety in the MRI machine, I’ve been surprised at how relatively calmly I managed to make it into surgery. A big part of it was having Kerry there with me.

Kerry Clowning Around

My Friend Kerry; Sometimes a Clown

But, I’d also found support from others. Shortly after my diagnosis, I left a message for my physical therapist who called me back from her vacation. I asked if she would help me manage any major disabilities that might occur from such a serious surgery. She said, “Yes,” without hesitation. Her support gave me a foundation to move ahead in facing my fears.

I also grew to feel confidence in my surgeon, her staff and the hospital. After I returned from visiting an alternate neurosurgeon in San Francisco who strongly recommended against surgery, my neurosurgeon calmly restated that she had full confidence in her skill with this procedure. She assured me that I was going to be fine because of my relative overall health. This sunk in. She wasn’t worried I would have complications, and I began to feel more comfortable placing my life in her hands.

One of my scariest preoperative thoughts was of losing my sight. She reassured me that there was only about a 3 percent chance I would lose vision in one eye. The path of traumatic illness is full of moments of acceptance and the small possibility of blindness in one eye felt manageable.

I’d also been impressed by all the people and specialists my surgeon worked with or referred me to. She was a good judge of skill, intelligence and character. I knew my surgical outcome might be difficult to face but I was in very capable hands.

But just in case I didn’t survive, I prepared a couple of letters and left them with Kerry. One was to “Emma” (not her real name), whose relationship cutoff I had written about in 2013. Because our relationship had lacked closure, I expressed my regard for her and appreciation for what we’d shared, and my regret that our friendship had fallen apart. I wished her well in life.

Kerry had cut me off many years ago as well after our college relationship ended. She didn’t speak to me for the first two years but over the past twenty, we’ve become platonic soul mates. We admire each other’s paths and know and trust each other very deeply. I couldn’t have asked for a more supportive friend as I prepared for surgery.

Post-Op

After Surgery Email

Kerry’s Email to My Friends After Surgery

The first time I remember waking from surgery, a very calm and skillful nurse began checking my reflexes. I had double vision and couldn’t focus on things, but this was in the scope of temporary dysfunction that seemed reasonable to expect and thus was un-alarming. Kerry moved quickly to my side and held my hand again and stayed with me over the hours following surgery, as I was put through CT scans to watch for intracranial bleeding and swelling.

When I’d stabilized the next day, they removed the catheter. For those who have not experienced this, it’s an odd sensation, like a small Koosh ball being pulled out of your penis. Within a few days, another nurse removed the staples from my scalp. It was difficult to look in the mirror and see the scar but I had also come to accept that it would be part of my future.

Eventually, they moved me out of ICU and back to a recovery unit. I didn’t last long there. In the middle of the night, they detected a major drop in my sodium level, performed another CT scan and moved me back to ICU where they kept me until twelve days had passed.

There wasn’t a lot to do in ICU. Most of the nurses there were amazingly skillful and kind and provided some company. Friends visited. But there was a lot of alone time. I’d walk the hallways with my sodium IV, catching glimpses of bedridden patients in other rooms. It wasn’t an easy time but seeing others gave me perspective at how fortunate I was.

The swelling and internal trauma from the craniotomy definitely caused some speech difficulties and pockets of memory loss. My recollection of the surgery is that it all went pretty smoothly, but apparently there was some drama. For example, I didn’t remember emailing this to friends:

email to friends after brain surgery

My Email to Friends

I had continued to have headaches. And, I asked to speak to a doctor before continuing the aforementioned medicines. Ultimately, I think I told the nurse on duty that I would leave if I couldn’t speak to one. She overreacted a bit, called security, and there were soon five guards outside my room. The least friendly of them told me that I needed to stay inside the sliding glass door and refused to let me pass. Not being much for his sort of authority, I actually called 911 and was surprised that the call was automatically re-routed to the front desk of the hospital. I’m still quite confused by this, but I realized I needed to take a deep breath and wait for them to sort it out. Soon after, the supervising physician came by to diffuse the situation and security dispersed.

Later, when alerted that my web server had crashed, I texted my friend Phillip who had agreed to watch over my websites for me. I clearly had trouble articulating anything coherently — it’s kind of funny now:

Linux Support After Brain Surgery

Linux System Administration after Brain Surgery

Actually, I know what I meant to say but I just couldn’t communicate clearly in English (and autocorrect didn’t help).

Everything began to normalize after a week or so in ICU. My sodium levels had stabilized and I was frequently bored. There were only a handful of vegetarian items on the menu so my meals got pretty repetitive. But I appreciated the people who delivered room service and the woman that came to clean my room. I continued walking the halls to stretch my legs and some of the nurses would take me downstairs for fresh air. It was a strange time, not knowing what lay ahead.

Mostly, I’d stay up late watching Netflix on my iPad and browsing the Web.

One morning, I looked at my Web statistics and noticed that my ex, Emma, had spent an hour and a half late the night before reading about my tumor and browsing my website.

It may seem weird to you that I can see this, but as a blogger and technology consultant, I check my analytics regularly. When visitors to my site engage in repeated behaviors with specific characteristics, their identity often becomes plainly obvious.

It was poignant and strange to sit there alone in ICU, having survived brain surgery with the help of my best friend who had also once cut me off, being checked on from afar by another person whose friendship I couldn’t save. It would have meant a lot to me to have Emma’s support during that time, but the experience reaffirmed for me the power of writing. I’d communicated a deeply personal story about my relationship with her that affected people so much that some would lash out at me with rage, others would write me letters of gratitude for helping them better understand a painful experience in their own lives, and Emma was possibly still trying to sort out the pieces for herself.

Emma’s visits to my website had actually continued off and on for several years and they increased in frequency for the next few months. I presume she wanted to know if I was okay but wasn’t comfortable opening a conversation.

The experience of having a brain tumor has changed me. I have become more open with people, more playful and more empathetic. And others in turn appreciate me in ways I don’t expect. Near the end of my stay, I was touched and surprised when my surgeon’s receptionist walked over from her office to visit me in the ICU and wish me well.

They discharged me on my birthday.

Healing at Home

The surgeon didn’t plan to remove all of my tumor as its geometry was too complex. But the images below show some of the pre- and post-op changes, left to right. While the images themselves are reversed, you can see the reduction of the central light gray circular tumor and the re-expansion of the left hemisphere of my brain.

meningioma MRI

Pre- and post-op MRI of my brain tumor

Within a couple of months, I would need radiation treatments to try to kill the remaining tumor we left around my brain, followed by years of monitoring. I’ll be writing about my radiosurgery next.

My surgeon suggested I wear silicon pads over my scar at night to help it heal:

scar healing

Silicon Pads for My Scar

Meanwhile, my neighbor, a photographer, agreed to take the picture of me wearing Harry Potter glasses for a card I planned to give to her.

I felt a bit uncomfortable facing people in the world with such a noticeable cranial scar but the silicon worked wonders. Lately, friends complain that they can’t even see it anymore; you have to look for it. But though the scar has faded, the lessons from surgery only grow.

Jeff Reifman Craniotomy scar

The Scar Is Difficult to See

Brain surgery was the biggest leap of faith I’ve ever taken. To do so, I needed the support of friends, confidence in others and belief in myself as well. Our health care system is far from ideal but it’s capable of tremendous feats.

While this has been an incredibly crazy, life-changing year, I feel so fortunate. Since my surgery I’ve met a handful of people whose loved ones had malignant brain tumors and all died from them. My tumor is benign. And I’ve read stories about people like Terri Caissie, whose autoimmune disorder is causing her body to attack healthy cells in her brain. (Please consider taking a moment to support her.)

My brain surgery has preserved my vision and likely extended and stabilized my quality of life. But the unexpected gift of surgery is to walk a path of life more closely connected to mortality, to value the present moment with more appreciation, and to view my future plans with more intensity.

Ultimately, This is About Privilege

My brain surgery has amplified my sense of empathy, and has brought home that this story is really about privilege. Its gift is to remind us of how fortunate we are for what we have and to ask ourselves questions about whether we want everyone in our society to be cared for in basic ways.

As I wrote in May, I didn’t have to walk far from the hospital to see homeless people. Seattle has a booming economy…and record homelessness. Our local billionaires Paul Allen, Bill Gates and Jeff Bezos want credit for winning Super Bowls, obliterating polio and launching space tourism, but housing the homeless and helping them build futures isn’t sexy enough. We build endless skyscrapers for Amazon’s technological future, but we don’t fund housing for the least fortunate among us.

Sovaldi for Hepatitis C

Rob’s Medication

It’s rare that we recognize our own privilege that has helped us along our way. I grew up in an upper middle-class suburb of Los Angeles, raised in part by a lawyer. I went to a private elementary school and my grandparents set aside money to pay for my college. I had the $9,291 needed to cover my health insurance costs until it paid for my $269,551 brain surgery and hospitalization. My friend Rob didn’t have that for his illness, nor were there facilities equipped to treat Tiffany’s son Keaton’s documented mental health condition.

Ultimately, Rob’s hepatitis medication arrived from overseas. Recently, I went to the Safeway pharmacy with him to pick up a related prescription and witnessed the dismissiveness the low-income people around him experience there every day. I had to step forward and assert myself at the counter to get the pharmacist to properly answer our questions and in doing so reduced the bill from over $1,000 to $338. The look on his face changed when he realized that I was not one of his customers but a confident advocate. Rob’s on the 21st day of his 84-day treatment.

When Tiffany is ready to fight for others in Keaton’s name, I hope to step up and support her as well. There are still no criminal charges against the prison staff that killed Keaton and falsified their logs to conceal their responsibility.

As all of this goes on, my friend Kerry returned home to welcome her son Joshua into the world.

kerry and joshua

Kerry’s Family Welcomes Joshua

To face surgery and extend my life, I relied on my friends and I had access to a health care team I could trust with my life. How can we ensure the health of people like Rob without private insurance or wealthy friends?

There is so much injustice in what happened to Keaton. If we pull at the threads of Keaton’s death, and of Rob’s illness, we begin to uncover many layers of dysfunction across our society. And if we don’t pull at them, how will we honor these people? What kind of world will we leave Joshua and children like him?

My surgery is behind me now, and it’s likely that I’ll live a normal lifespan, but there’s a chance the tumor will compromise my quality of life and possibly shorten it. I feel an urgency now to step out to talk about what I’ve learned, what I’m observing, and to sensitize others to the need for change. More than ever I feel motivated about my writing and making change with all that I’ve learned from my experience, and from Tiffany, Keaton and Rob.

This series of essays on my brain tumor has been edited by Kate Elias, an excellent freelance editor in the Northwest who I highly recommend. If you need help with your writing, please check out her website. Photo credit: “Could you just do a scar like this?” by Matt Hagen.

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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.