All About My Life
Living with a brain tumor
I have a good life. I am happy, I have great friends and family, I do not live in pain, I am educated, I am comfortable. I am healthy in the sense that I never get sick—I haven’t had a cold or stomach bug or flu in years. I am unhealthy in the reality that I have cancer in my brain.
My doctors talk about my oligodendroglioma in the present tense—they are careful not to use the term “remission” as this type of cancer is characterized by long, microscopic tendrils. No one can be sure where it is living, lurking, when it will return.
My prognosis is very good. Doctors are optimistic about long-term survival, and a promising new study about my course of treatment has recently been published. Yet I still have to get an MRI every three to four months, just in case.
Living with oligo is like straddling two worlds—one foot in the hospital and one foot in “normal” society. From my liminal perch I have learned this delicate dance, a precarious balance to find a place of comfort and peace.
I completely lost the use of my left arm during my brain surgery. I did occupational therapy and my brain responded, building new pathways, desperately wanting to reconnect with its lost limb. I regained a lot of function in the first year post-surgery. Progress slowed, however, and as I write, five years post-op, doctors agree that my arm has regained all the function that it will.
I can’t type or use my phone with two hands, I can’t tap my fingers to music. Cashiers sometimes give a puzzled look while I struggle with my wallet. Friends know that I can’t carry both a drink and a plate of food to the table in one trip. When I’m tired, I sometimes realize that I’ve been sitting on my hand.
But I’m okay. I no longer have to pick up my left arm with my right one to inch a shirt on. I can hold my cards while I play gin rummy. I gesture when I talk.
Like the rest of me, my arm is neither fully healthy nor terribly sick. It is too weak to use most gym equipment but too strong for me to qualify for additional therapy.
I have always been introverted and anxious, but brain surgery threw my panic disorder into overdrive. Lights, sounds, and smells became nearly unbearable. Before brain surgery, I was not the type of person who enjoyed going to loud bars or crowded concerts. After brain surgery, even having coffee with a close friend left me reeling, my ears ringing. I could hear a whispered conversation two tables over louder than I could hear the person across from me. The soft lights of a coffeeshop and the tinkling of mugs and spoons in the bus tray were dizzying.
I continue to struggle with anxiety, but with medication and therapy I am finally able to have a conversation in a public place without holding onto a table or wall as if my life depended on it (at least most days).
Two years after my surgery, my MRI showed that my tumor had grown. I got radiation. Radiation to your brain is exactly as terrifying as it sounds. Though here I am, on the other side of it.
Radiation was three years ago, as I write this. I have a burn scar on the side of my head with a radius similar to a grapefruit’s. Some hair grows there, but my bald spot is mostly obscured by the scarves I wear daily. People love my “bohemian” style. I’m just grateful that I can hide the scar that causes me so much embarrassment.
Radiation has contributed to problems with focus and short-term memory. I cannot enumerate how many times a day I forget what I’m doing or what I was looking for. The neuropsychiatrists have told me that my brain now behaves like I have ADHD. I’m not entirely sure how that is different from having ADHD (though nothing about me feels hyper).
Sometimes I lose time. I might sit down to put on my socks and shoes and somehow 45 minutes will pass. This doesn’t worry the doctors—they see much worse.
Since radiation, I regularly have moments of acute and profound weakness. Afternoons that are lost to deep sleep—the type of nap that you wake up from not knowing where you are, or if it is day or night.
I get migraines and headaches more often now.
I try to pay attention to what might cause my headaches and “wipeouts”—those times when I am flattened by fatigue and weakness without notice. Some are related to hormones, some to the weather, some to allergies. Sometimes there is no apparent cause. Maybe epilepsy medication side effects? (I have epilepsy now.) Not doing enough? (Walking seems to help me when I feel an oncoming migraine.) Doing too much? (I can easily overdo it, whatever it is.)
After radiation, I got chemotherapy. The chemo obliterated my eggs so I became perimenopausal at 33 years old. The chemo has also made me chronically anemic. From my understanding, there is actually plenty of iron in my blood—my body just can’t efficiently use that iron.
All of these things—the tumor, the surgery, the radiation and chemo, the headaches, medications, changes to my body and blood, paralysis, stress—make me tired. Really tired, a lot of the time.
When I get especially tired, I have a difficult time finding words. Sometimes I have a lot to say, but my mouth doesn’t move fast enough, and my words are slurred. I will forget to listen during a conversation. I ask the same question twice in a row.
I don’t watch many movies. I like TV because the stories pull me in faster. They also wrap up faster.
I really hate admitting this, but I have a hard time reading like I once could, and like I want to. Lines blur and words invert and slip when I am tired.
There are so many forms, so much paperwork, when you are sick. Entire days are lost on hold with insurance companies. As I hope you have seen, everything—even the simplest activities—take more time and energy.
I don’t drink, I don’t stay out late, I am not the life of the party. Most of the time I don’t have energy to make it to the party. My friends understand; they are helpful, forgiving, and patient.
(Some people haven’t understood—they expected more from me. Not everyone has the capacity to marry my two realities in their minds).
But I am well. I take my dog to the park, I do my laundry, I cook, I write, I read, I’ve dated, I volunteer, I visit with friends.
I teach eight hours a week. It is my career, and I am really good at it. I don’t often see my coworkers, but recently I registered new students alongside another teacher. We knew each other's names from team emails, and had chatted across the conference table at meetings. But we never really talked before.
During a lull in registration, she asked me what I did for work.
The simple question made my head spin. I answered honestly to every other person who ever asked me—I teach yadda for yadda yadda—and let them assume my work hours.
But she knew my hours. She had the same hours. My full-time job was her side gig.
How should I respond? Tell her that I have cancer? That will make her feel bad. Do I tell her “this is my only job”? Then she will think I’m rich or married or a stay-at-home mom.
At the same time, the question was flattering. I passed. She hadn’t noticed my limp arm or how tough it was for me to stack those papers. She hadn’t noticed my bald spot.
Being in this in-between space isn’t easy.
My neuro-oncologist sees me thriving—I am smart, active, good-looking, well-spoken, I haven’t had a seizure in a year, I am working, I have healthy relationships, I am driving again, caring for a pet. My problems don’t register as problems in his world.
Yet when I take these same issues—fatigue, memory problems, confusion, dizziness, headaches, weakness—to my primary care doctor, she won’t touch me; I am too sick, I have brain cancer, I should talk with a neurologist about my medications. What did they say at the NIH?
I remember well the blood transfusions I received two years ago. I ran into an acquaintance my age who was there undergoing his own treatment. He died from his cancer two months later.
I see friends taking risks—traveling, starting businesses—or settling down—advancing in their careers, starting families. All of my income goes to medical bills, dog food, gas, groceries, and rent.
I know that I am not going to go back to school to become a doctor, I know that I am not going to hike huge mountains on different continents, I know that I will never be rich.
But I am happy with what I have—the dog, the garden, my friends, family, and health. I am happy with the work I am doing.
Not long ago, I went to the wedding of a friend from college. At the reception, an old friend saw that I wasn’t feeling great and brought me a plate of food in a quiet area outside of the main event space. He sat with me while I ate. When I finished he offered to go get more of whatever I wanted. I thanked him and told him I was full, I’d had enough.
"Just enough is plenty,” he replied.
I think of this expression regularly. Its beauty and simplicity are perfect. The words are true. Enough is plenty. My life is full, my heart is brimming.
Power in Numbers