Civic Engagement & Social Impact

“It’s all in your head.”

November 14, 2023

In March 2023, I discovered I had a malignant brain tumor and stage IV brain cancer. Glioblastoma is the most aggressive type of brain tumor, and people usually do not survive past 12-18 months. My surgeon gave me a prognosis of six months. When friends and acquaintances hear that I have brain cancer, they tend to break down, overcome by emotion. Many are hesitant to reach out, afraid that I am immersed in grief. I often end up being the one to cheer up the other person, reassuring them that I’m okay, as much as someone with a grade IV malignant glioblastoma can be okay. (To make matters worse, my tumor is both unmethylated and IDH wild type, which means that it is resistant to treatment.) 

So why do I believe that these past 11 months are the best ones of my life? The way I look at it, I have two choices. I can be filled with regret for all the months of my life that I will never have, people I will never see, and milestones that I will never celebrate. Or I can celebrate each moment of each day, right now. My husband and I decided that whether we have 30 days or 30 years left, we will make the most of every minute. I am turning my full attention to the world around me, enjoying all the little things that make our lives so rich. In September, I was in a Gustav Klimt painting. Everything around me appeared to be burnished with gold leaf. Sunshine filtered through the gingko trees, and splashed upon the autumnal carpet of leaves, transforming the world into a magical place. On the pond, just past the hill, fifteen magnificent white trumpeter swans were engaged in an orchestral composition. With so much beauty around, how could I feel anything but a deep sense of gratitude? 

There’s beauty in an unexpected setting too – the hospital where I clocked more hours than I ever expected. After two brain surgeries, I underwent radiation, chemotherapy, and clinical trial immunotherapy sessions. Between treatments, I took two-to-three-mile walks around the hospital, admiring the art in the buildings. Cleveland Clinic has one of the region’s most extensive contemporary art collections, with everything from Yayoi Kusama’s polka-dotted Pumpkin to Jaume Plensa’s Cleveland Soul sculpture. Even the medical ID I got each time sparkled with rhinestones. On every visit, I encountered true angels: oncology nurses are among the most wonderful people I have had the privilege of meeting. My oncology nurse even spent her lunch break playing Scrabble with me. I am currently undergoing proton radiation in NYC, and the staff has been incredibly kind. The other day, I walked into a radiation session, and they were playing Bollywood music! It has been an interesting journey since March, but I do not think I ever expected to undergo radiation while listening to joyous Bollywood songs.

I was grateful to be able to run the anchor leg of the Akron marathon relay in September (two months after starting my cancer treatment). 

Family has rallied around me, traveling across the country, and from India and Germany, to be with my husband and me. My sister-in-law calls me every day when she isn’t visiting from Texas. My son and his girlfriend visit often, and my nieces and nephew show up between college and work stints. My brother stays with us whenever we need him, working on his laptop in hospital lounges during my treatments. It is a true joy to reconnect with him after years of living across the country from each other, raising our respective families. We discovered how much we had in common, and I especially prize the trait that he informed me we had inherited from our father, that of “unrelenting optimism.” Quite possibly, that’s the trait shaping my journey from the time I received my fateful diagnosis in March. 

An ardent hiker and trail runner, I sometimes wondered what it would take for me to give up hiking the backcountry in Yosemite National Park or running the snow-covered trails in the Cuyahoga Valley National Park. Well, I know now. Stage IV glioblastoma can make you stop, or consider giving up, some of the very things by which you define yourself. I learned to pivot and try something different, hiking the towpath by the Cuyahoga River instead of hilly trails. I started short runs and got up to five miles. After my third surgery in late December. I even ran a few miles today. And life had another wonderful surprise for me: two months ago, we were able to go to Spain and a friend took us sailing on the Costa Brava. 

Along the way, I have been privileged to enjoy amazing milestones: Christmas and New Year celebrations with our extended family; our son’s 26h birthday; our 30th anniversary on January 29; and a very precious one: my husband’s birthday today, the 1st of February. It has truly been an 11-month celebration. I have had wonderful doctors who have me here, but one person single-handedly changed the trajectory of my illness. My husband runs a global company and still finds the time to take care of me, from the smallest detail to the biggest ones. He pursues new clinical trials with my doctors, and fights to get me into them. Very few treatments are currently available to me, so when we heard about proton radiation and a CAR-T trial, he was tireless in his efforts to have me enrolled. I often wonder how I got so lucky to have found such a dedicated partner.

It has not been all fun and games. Fatigue, hair loss and nausea are all real. When we came to NYC, I suddenly started to collapse after walking a few blocks. We went in for our radiation the next day, and Astrid, the young nurse, immediately canceled the treatment and made the call to send me to the ER. If it were not for her quick thinking, I do not think I would be here today. The hydrocephaly (cerebrospinal fluid buildup in the brain) was back. After my third cranial surgery, I was released from the hospital, and am working on recovery.

While discussing ways of dealing with illness, my brother remarked that it all comes down to our attitudes: “It’s all in your head!” “That’s true,” I joked, “the tumor IS in my brain.” I hope that complementing the medical regimen with daily exercise, being out in nature, and surrounding myself with loving friends and family, will keep my dad’s hand-me-down trait of unrelenting optimism alive.   

Updated February 1, 2024

Resources:

Anticancer, a book by David Servan-Schreiber, while published in 2007, was incredibly helpful. 

https://www.cancer.og/.cancer/type/brain-spinal-cord-tumors-adults/causes-risks-prevention/what-causes.html

Author’s Note:

Anu Ramakrishnan is a freelance writer and Cleveland guide who believes that life offers lessons at every turn. She is passionate about art, books, food, people — and especially, dogs.