I am having trouble with my brain. It is six months since multiple brain metastases were discovered for the third time since I was diagnosed with incurable lung cancer in October 2014. The first time they responded to a targeted chemo drug supported by some complementary treatments. This lasted about 18 months. The second time 27 new lesions were successfully erased by Gamma Knife radiation, which targets each one with minute accuracy while protecting the surrounding tissue. Unfortunately, that treatment isn’t possible this time because I have leptomeningeal disease, a rare complication whereby tumor cells spread to the membranes and gain access to the cerebrospinal fluid pathways.
My darkest hour on this inadvertent pilgrimage with cancer was the first time my oncologist told me I had “too many brain tumors to count.” That was nearly three years ago. This news concluded a series of scan results that revealed lesions in my lungs, lymph nodes, spine, ribs and shoulder blade. By then, I had nearly lost the vision in my left eye and was mixing up words in sentences. The cognitive effects had begun. This was more terrifying than the large tumor on my C3 vertebra, which was eating through the bone to my spinal column and threatening my ability to move. And gasping for language was more devastating than gasping for breath.
As determined to avoid whole brain radiation in my current situation as I had been then, I requested exploratory brain surgery to remove a tumor that seemed close enough to the surface to access. In the absence of an active tumor in the rest of my body, the aim was to biopsy the tissue for a specific mutation that can be targeted by a drug with proven efficacy in my type of cancer. The long risk list began with “You could die on the table” and meandered down a steep incline of neurological impairments. But even this frightening prospect paled against a 60 percent chance of testing positive and being offered a whole new lease of life.
I tested negative. As I write I am still exploring options, but I am in a holding pattern, circling like an airplane in cloudy skies, wondering where, how, and if I’m going to land. It is now six months since this latest batch was discovered—the longest period since my diagnosis that I haven’t found a clear way forward for what I’m facing. Strangely, after an initial growth spurt followed by significant shrinkage that somewhat baffled my medical team, the tumors have stabilized. No new ones. No progression. No change in treatment. These facts alone elicit questions worthy of attention: What would I not have to face if the pathway was instant and a treatment obvious? What parts of myself would I get to deny or ignore?
Medically speaking, living with incurable cancer is much like living with a chronic condition because more effective, life-prolonging treatments are becoming available. However, the blood-brain barrier is a highly selective security system that few drugs can penetrate. This makes the brain especially vulnerable in a situation like mine.
Psychologically speaking, my entire being feels vulnerable. For the third time in less than three years I am having to confront fears that far outrun my fear of dying: fear of being severely cognitively compromised; losing the powers of discernment I have worked so hard for over three decades of applying and teaching transformative life skills; not being able to write essays like this one nor blossom as the author I have only just become; sliding into dementia before dying in a swollen-brained coma; becoming absent from my beloved husband and daughter while I am still in their presence; not being Sophie anymore.
I could limit my line of inquiry to physical needs alone, focusing on medical interventions that might extend my time and lucidity. That is certainly my priority. But cancer is as challenging psychologically as it is physically, and I’ve responded to it as such from the outset. This has enabled me to experience it as more liberating than constraining. It has led me to reach beyond physical disease to other forms of dis-ease within me—emotional, psychological, spiritual—such as the years of pent-up grief in my lungs and the light I refused to shine for fear of being “too much.”
And now, facing multiple brain tumors for the third time invites much finer scrutiny. Why do I keep getting brain metastases when other metastatic patients get none? Why am I among the rare 5 percent who get leptomeningeal disease? Why this disease in this form in this person? Why are my deepest fears being served up to me again? What is my brain trying to tell me? And what is the universe trying to tell me about my relationship with my brain?
This exploration has led me to realize that I have used my intelligence for far more than understanding the world. When teenage boys retreated from my prematurely big boobs or saw them as cause to objectify me, I could dazzle them intellectually and win their respect. In my self-loathing, bulimic years at university I could conceal my “craziness” with brilliant essays, debating prowess, and first-class degree results. When relationships failed and loneliness intensified, I bolstered my self-regard with the high achievements of a quick-witted workaholic. And when I wrote myself off as unlovable, I settled for being admirable instead. In other words, I asked my brain to do more than its day job. I asked it to house my worth.
Now I’m compelled to ask, “Am I still of value if I can’t construct coherent sentences and my hard-won wisdom recedes like the tide? Am I acceptable if I’m not astute, and lovable if not autonomous? And if I am no longer able to contribute to the world, will I still be enough?”
Is this exploration going to deliver a medical solution to my brain tumors? Probably not. But if I can answer each of these questions with an unwavering “yes,” then I will not only have scaled the psychological heights of having cancer in my brain. I will have begun to claim its gifts.