What It’s Like To Be 25 And Living With Brain Cancer
Current City: Los Angeles
What condition/ailment are you living with?
I have brain cancer. More specifically, a tectal glioma tumor.
Can you give us a little background on the condition? What are the symptoms?
Tectal glioma’s are usually found in children, they are only found in 1-2% of adults with glial tumors. The reason I was having such a bad headache when I was diagnosed was because the tumor was blocking my cerebral-spinal fluid causing a build-up, which created the pressure in my brain.
When were you diagnosed?
I was diagnosed a year and a half ago.
Were you already experiencing symptoms when you were diagnosed?
I was on a road trip and camping with my two sisters when I started experiencing a severe headache. I’ve had headaches most of my life and usually just take Excedrin to help with the pain. However, after two days of searing pain where nothing would help, we decided to end the trip early. When we got back home I went in for an MRI, my doctor said it could be any number of things, but not to worry until we had the results back. My sisters and I went for a walk around Echo Park Lake as we waited for the results. When my doctor called and said they found a tumor and that I needed to check myself into the emergency room at UCLA Medical Center right away, I couldn’t breathe. It was unreal.
How does this condition affect your life?
After I was diagnosed I was in the hospital for about a month. I had to have two surgeries, one to release the pressure and one to put in a shunt. The tumor itself is right on my brainstem, making it for all intensive purposes, inoperable.
On a daily basis?
I will be dealing with this for the rest of my life. I already went through my radiation, which caused some of my hair to fall out and I was constantly fatigued. I am currently in a yearlong bout of chemotherapy in intervals of 3 weeks. I don’t get as nauseous anymore, but I have basically little to no energy to do anything. There’s no way of knowing if these treatments will even shrink the tumor at all, it’s all kind of a gamble.
Like I said, I’ll be dealing with this for the rest of my life and sometimes I actually have to sit down and wait for the fear and depression to pass before I can get on with my day. This will probably be the thing that kills me and it will probably be when I’m much younger than I want, so my life is forever changed. Some of the things I wanted to do before, like grad school and traveling, don’t seem possible. I have to be extremely healthy as my immune system is much weaker making me susceptible to many more ailments. Basically, I don’t get to be irresponsible ever again.
Does it require medication? Does the medication have side effects?
I take chemotherapy in the pill form. It makes me nauseous sometimes, but mostly I just feel fatigued. I’ve also noticed my sex drive is completely gone; it’s a little known side effect of chemotherapy. Many of my medications also cause side effects that require more medications to help with. It’s a vicious cycle.
What is the hardest part of having the condition for you personally?
I’m not sure where to start.
How does this condition affect you differently being younger compared to those who are diagnosed when they’re older?
My entire life is basically planned out by my doctors and by this tumor, if I were older and had had the chance to live more maybe it wouldn’t be so bad.
What do you do personally to cope?
Art saves me. I use my art to express the nature of illness and disease in contemporary life.