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Name: Tiffany C.
Type of Cancer: Grade III Anaplastic Ependymoma
Diagnosed: 2006 at age 17
By: Tiffany C.
— Categories: Adult Brain Pediatric
How It Started
I was diagnosed with Grade III Anaplastic Ependymoma in 2006. The first thing that crossed my mind at 17 was whether I was going to lose all my hair. A high school senior shouldn’t have to worry about cancer. Instead of going to Florida with friends for spring break, I recovered from a craniotomy one day after a scan showed a mass in the right frontal-parietal lobe.
About two years went by after my first craniotomy when suddenly there was new tumor growth. Here we go again, this time interrupting my sophomore year of college. I had my second craniotomy in 2008 and stereotactic radiosurgery in 2010.
In the summer of 2016, while driving to work, my left hand and fingers started to feel slow and numb. It was like there was a delay between thinking of doing something and you can’t do it like you normally would. I contacted my neuro-oncologist at Henry Ford Hospital in Detroit. Once I got the results back from the MRI, we saw that my tumor had recurred again.
My third craniotomy would be different from the others because this time, I would complete the standard radiation and chemo regimen. I heard the word cancer for the first time. I still don’t like to admit that I have brain cancer—it makes me uncomfortable and emotional.
How It’s Going
Now 33 years old, I’ve undergone countless surgeries since my initial diagnosis including eight craniotomies. I’ve completed all eligible brain tumor standard of care treatments (six weeks of radiation, Temodar, CCNU, Lapatinib with Temodar). I’ve participated in two clinical trials at the National Institutes of Health (immunotherapy – nivolumab, chemo – marizomib).
Because my tumor pushes up against my motor strip, I lost the use of my left side in 2019, resulting in hemiparesis. I have attended inpatient rehab and continue with outpatient physical therapy and occupational therapy.
I hope to share my experiences with both existing and newly diagnosed patients and their families, as well as anybody else who is interested. I created a blog called Tumor Talk Blog that people can use as a resource to learn about the brain cancer world and my experience so far.
While there’s no “Brain Cancer for Dummies” book, as I think back to the beginning, I would have wanted the chance to talk with another survivor as I tried to understand what this exclusive cancer world is all about. In addition, I enjoy sharing my experience from the patent perspective in different videos for Henry Ford Health System, including this video called Excellence In Care: Extraordinary Brain Tumor Case.
I also enjoy participating in local and national brain tumor events. There are many events each year to raise funds and/or spread awareness, especially in May. May is Brain Tumor Awareness Month #GRAYMAY! I have participated in Head to the Hill hosted by the National Brain Tumor Society, which was an amazing and powerful experience. There’s no better way to make an impact than going straight to your people of Congress to advocate for the brain cancer community. I started choking up when I was talking, which isn’t bad because it connects the person to the disease rather than just handing them pieces of paper.
One of the most emotional and wonderful parts of the trip was the welcome reception held on the first night for Ependymoma Awareness Day. The speeches at the event centered around ependymoma, which is the type of tumor I have. Having the chance to attend Ependymoma Awareness Day after all this time was amazing. I often feel alone in this ependymoma journey, not knowing anyone else with the same diagnosis, but on this day, I knew I wasn’t alone and truly felt like I was with my people.
It’s definitely heartbreaking to find out the news that you have a recurrence. You have to face the same things you previously had to face (if you choose to have surgery again). You take what you learned in the first go around.
Rather than talking/thinking about dying. I try focusing on staying alive. I think about all the people, goals, and aspirations I want to continue living for. I envision myself celebrating all of those things. Flipping your point of view from thoughts of dying to thoughts of living helps alleviate the anxiety that comes with thoughts of dying.
Don’t get me wrong. I definitely have those uncomfortable dark thoughts and moments. But then I try extremely hard to remember how far I’ve come. I think about the things and people that greatly influence the choices I make.
As hard as it is and as impossible as it feels, just take it day by day and live in the moment. Don’t let it limit what you do in life.
Buy the dang tickets. If you want to go somewhere, do it. I’m 33 and just dyed my hair pink. Don’t waste your time. Buy the tickets, don't waste time dreaming about your dreams, live them!
Whatever or wherever it is, make it happen and buy the dang tickets. What I'm trying to say is if you want to go to a concert? Buy the dang tickets. Have somewhere you've wanted to travel to? Plan it and do it. You only live once. It only took me 12 surgeries and loss of function on my left side to realize it so if you're reading this, start now.
You’re stronger than you think you are. To my fellow cancer survivors, never give up!