My Choice

“You don’t have a choice.”

Since receiving my diagnosis at 24, this is the phrase I’d hear time and time again. You don’t have a choice. But this phrase is incomplete. It should say “ You don’t have a choice, because if you don’t do this, you will die.” No one wants to say that to a grieving, shocked patient.

Ellie pre-cancer

Eight months into treatment, I’m fairly relaxed about the whole process of halting my busy career building life, pausing all my typical “grown up” goals of owning a house, getting married and traveling (thanks Covid). Right after the new year, I had a seizure and within a week or two, received an awake craniotomy for a Grade 3 Anaplastic Astrocytoma brain tumor.

I chose how to face the surgery (singing hymns the night and morning prior to it).

I chose how to handle recovery (fighting to regain my speech and singing voice after half my face and throat was paralyzed for a month).

My voice took half a year to begin to return. That was devastating to me because I’ve played violin and sang since I was a young child. I chose how to handle radiation and intense chemo (smiling because if I showed any distress, I wouldn’t be able to control the nerves in my face and wouldn’t fit in my radiation face mask). I chose how to handle my fear and anxiety (by ignoring it until old trauma pushed me to seek therapy).

I choose how to live the remainder of my year of chemo (learning new musical instruments and taking project management courses so I’m extremely bad-ass when I finally return to work).

I HAVE a choice.

I’m partially bald. I was partially paralyzed. I was mistreated because I couldn’t speak well for a bit and looked abnormal. But I chose to move on (however difficult) because I am not my circumstances and I am not going to sit in some dark well of depression while life moves on. I am so much greater than the outward markers our society utilizes to judge one’s worth.

So are you, reader.

One of the mentalities I love to promote is having confidence in one’s self. It’s devastating to me when I see young men and women put themselves down, down play their achievements and cultivate this false sense of “humility.” It seems like American culture has confused “humility” with “lack of pride and dignity” when it comes to its young adults, especially in the workforce & graduate school.

Women automatically are at a disadvantage in male dominated fields (medicine, engineering, the sciences etc.,) and have to work twice as hard for half the perceived respect. A male is automatically assumed as competent, but a woman has to prove that she’s capable all the while being made the recipient of degrading jokes or sexual harassment. There is a long way to go to promote equality, but that begins with the choice of strong minded young adults to stand up for themselves and pave the way for others to receive a better, more fair opportunity.

Please advocate for yourself.

Please don’t compare yourself to others.

Please be kind to yourself.

Please allow yourself to grieve, to take pleasure in the small moments and to celebrate your milestones.

Cancer was not in my grand life plan, but it showed up anyways. I’ve been told “you don’t have a choice” over and over. I’ve been rallied against, time and time again, throughout my mathematics degree and engineering career.

I have a choice and I am demonstrating that very power here and now. For your sake, I hope you do too.

Note from the author:

Ellie after surgery

When I was in surgery (Jan 2020), I was awake for the entire craniotomy and remember Dr. Komotar talking. He had me sing in about 10 different languages (to ensure I kept my singing languages) and also had me move my hands and body. Losing my ability to sing due to the temporary paralysis was devastating to me. I’ve always been incredibly stubborn and strong willed, such that when I had an adverse reaction to a medicine post surgery, the residents brought me pen and paper, and I wrote out that I was having a reaction with my non dominant hand on the side where I was partially paralyzed (since I couldn’t speak after being intubated).  For the first few weeks, I only spoke in Spanish because my tongue couldn’t form the shapes to speak English coherently. Three days after surgery, I was so adamant to prove to myself that I wasn’t incapacitated, that I calculated the volume of my brain and the ratio of my tumor to it. Three months after surgery, in the midst of chemo and radiation (to my frontal lobe), I studied for and took the GRE- all to prove to myself that I wasn’t stupid.

No one thought less of me for my tumor, but I needed to prove to myself that I was just as capable as before my brain surgery.

What I want to convey with my personal story, is that the essence of who we are as humans is not tied up in a school, work or family identity. It is separate from society’s relentless need for achievement and the identifiers that go with it. I’ve been on all sides of the health spectrum (a caregiver, a patient, and a researcher).  I’ve watched my grandfather deal with a chronic illness for 10 years and helped care for him along with my grandmother.

He died one week after my 21st birthday (which also coincided with my senior year university exams). Being a patient is by far the easiest of those roles because there is a set treatment and I do not sit powerless, like caregivers often do. I want to be the reason someone decides to get up and try again, even when they’re exhausted. That is why I submitted this article on “My Choice.”

All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://elephantsandtea.org/contact/submissions/.