A Real-life Story of Fear, Curiosity and Courage
Diagnosed with a benign—but possibly recurring—brain tumor, local journalist Naomi Ishisaka did what she’s always done: She plunged into researching her condition and then inspired people with her ability to tell a story
by Naomi Ishisaka
Meningioma. The word was long, unfamiliar and frightening. Before September 2009, I had never heard the term, but I had heard its lay equivalent: brain tumor. As a journalist whose entire self-concept and career depends upon a sharp and agile mind, the idea of a tumor invading and attacking my most precious resource was terrifying.
In retrospect, it all seems obvious. The incessant weeping in one eye, the protusion of my eye socket and, finally, the paralyzing headaches. For years, optometrists offered me a mystifying array of bizarre hypotheses, telling me my right eye was “suffering a localized allergic reaction,” “going through a phase” or “sunburned” – none of which seemed remotely plausible. How could one eye and not the other be sunburned? How could I have a localized allergic reaction in just one eye for over two years?
Ignorant of the critical difference between the prescriptive practice of optometry and the medical practice of ophthalmology – a distinction that could have proved deadly – I accepted the cavalier attitude toward my eye problem as the conclusion of trained experts who knew better.
It was only when I began to experience sharp, piercing headaches that I went to see my primary care provider, an Advanced Registered Nurse Practitioner (ARNP). Coming from a family of stoic and reluctant patients I felt silly going to the clinic for a headache and did not make any connection between my eye and the sharp pains in my skull. But after taking one look at my eye, my ARNP immediately ordered an MRI.
The tumor, which I would later learn was called a “spheno-orbital meningioma” turned out to be in a difficult and uncommon place, within the bones and orbit surrounding my right eye and brain.
As a journalist, my first instinct was to research everything I possibly could to understand my situation better. Despite the pleas and admonitions against doing so by my friends and medical providers, I voraciously studied the survival rate, the various risks of surgery and the effects of untreated tumors.
I found the most in-depth information about the disease, treatment, and prognosis was written by medical professionals in a language only they could understand. Yet I discovered a worldwide community of regular people who took matters into their own hands to fill that gap. They created blogs documenting their brain tumor experiences, contributed to message boards and set up sites – such as the online community ItsJustBenign.com – to help other people know what to expect, share fears and anxieties and answer a multitude of questions, medical and mundane.
Even for someone used to tight deadlines, I didn’t have much time to prepare. My tumor diagnosis was on a Thursday and the neurosurgeons at Harborview wanted me to have a craniotomy – brain surgery – the following Tuesday. The doctors feared the tumor would ultimately blind me, trigger seizures or worse.
But before I went in to the hospital, I knew I had to do for others what had been done for me, and use my journalism skills to keep not just my friends and family informed but also people facing the same situation around the world. The day before surgery, I quickly set up a rudimentary blog, posted my MRIs on it and started to write about what I was going through.
While my biggest fear was that I would come out of surgery with my intellect or my personality compromised, after an 11-hour surgery, several blood transfusions and a number of complications I emerged my usual ornery, irreverent self.
The months of recuperation were marked by an overwhelming amount of love, support, camaraderie and community. From the daily food deliveries from friends through FoodTidings.com to handcrafted hats for my bald head, the generosity and kindness I received was beyond humbling. The outpouring of support made what could have been an even more emotionally harrowing experience much more bearable. Yet despite my good spirits, physical challenges persisted. Pain, loss of vision in my eye from the surgery and inability to open my jaw plagued me for months.
But just as my patience ebbed, my pain began to decrease and my eyesight came back into alignment.
Today, I have just a few lingering side effects – I still cannot open my jaw very much and have no feeling in my scalp. The weeping is back in my eye but I am told it is nothing to be alarmed about yet.
The most profound side effect from the experience however has been the cogent reminder that the opportunity we all have to extend ourselves and positively impact each others’ lives is our greatest gift. Our efforts can make hardship more bearable and our fears less potent. As Susan, a fellow member of the site ItsJustBenign.com, wrote me after watching a babbling post-surgery video of me on my site:
Watching your video and hearing your voice… it really comforted me. … I just wanted to you
to know that YOU did make a difference in someone’s life… you made one in mine… I’m a little
calmer now… I feel a little bit braver too…