Sarah Ridgeway from Pennsylvania was diagnosed with a cancerous brain tumour called a Brainstem Glioma. In 2013 Sarah had a grand mal seizure. She was rushed to the hospital and after an MRI and countless tests, she was diagnosed with a Cancerous Brainstem Glioma. Sarah shares her story and her fight to keep going for her family and herself.
Disclosure: please note just to confuse everyone, England and America don’t have the same spelling for this disease. The UK uses the spelling ‘Tumour’, whereas America spelling is ‘Tumor’. So not to change Sarah’s dialogue, I have left the American spelling.
Hi Sarah, what were your symptoms?
I had other symptoms, but I dismissed them. I was too busy to be sick. I had moved to Pennsylvania a few years before that. I was working a lot as a Respiratory Therapist to take care of the family. My fiancé at the time, husband n0w, has 3 boys. I took on the responsibility of taking care of the household financially to let Ben stay home with the boys.
I had times in my life where I got really bad migraines. Spots and lines in my eyes. I did eventually get that checked, and they thought I was pre glaucoma because the pressure in my eyes was increased. My tumor had started pushing my brain forward and changing my vision. I still have spots and lines all over the place, not to mention the flashes. I got glasses and ignored the rest. My night sweats were horrible, I have always got them, except they got severe. That, I blamed on being a woman. I can’t have kids and had part of my cervix removed because I had precancer cells.
About a month before my first big seizure, I started getting nauseous and vomiting. I was a Respiratory Therapist. I couldn’t call out of work, so I did the logical thing. There was no way I was going in for a GI study. So I downed a bunch of water and hot tea every morning, went to work, got the report, threw up, saw my first patient, threw up… I had prego pops and Zofran to take. I brushed my teeth so much that I ended up developing an allergy to Colgate toothpaste. LOL, So that’s funny to add to my allergy list. From the point that it grew enough to cause my seizure, I’ve been developing new fun symptoms.
Migraine headaches, spike pain, I have different types of headaches, ringing in my ears, I always have a headache now, I”m very sensitive to any stimuli. Too many people talking at once, noises, noises. Neuro fatigue they call it. I’m all over the place. Some days I can handle normal stuff, some days I get confused, kind of lost in my world of pain and dizziness. I still vomit, but my meds help with all that. I now have short term memory loss, so I try to stay current in the Respiratory field. I take free classes on the respiratory association, but my memory and pain levels keep me from working. I won’t give up my Respiratory license, ever. I worked too hard for it. So I’m still on disability.
How are you doing now?
I’m doing the best I can in managing my symptoms. I still have tumor symptoms and post-radiation symptoms, but my most recent MRI was about 6 months ago, and it was my first “stable” MRI. It appears now that my tumor is stunted from the radiation. I still have high levels of anxiety. Any new ache or pain or flash of light in my eyes, I wonder if my tumor is changing.
I feel like a ticking time bomb a lot of days. It’s crazy to think about. If my tumor moves shifts or grows wrong, will it just stop my heart? That swims in my mind. It doesn’t scare me, it does make me anxious about my family. I don’t want anyone to be in that position to see that happen. I still have seizures, especially if I’m fatigued, stressed or been overstimulated. I try to stay positive and focus on the good things. Not to mention… well I am mentioning it… The headaches are severe.
What is the toughest challenge a survivor faces?
For me, it’s accepting things I can not change. Accepting that my “new mind” works differently. My physical abilities used to only be held back by time in the day. I used to be very energetic and always into something. And money. lol, Who doesn’t struggle with that.
Any advice for people or loved ones that get daunting diagnoses?
Be patient and easy-going. Get used to waiting rooms. If your loved one used to be a clean freak about their house, they won’t be anymore. Lol, Things will change, but hold on to that person with love and be there for them. My sense of humor has always been bubbly and dark, but it got way darker after my diagnosis. That may happen, or every day may be different. Remember it’s the brain we’re talking about. It controls everything!
What do you do now in your life?
I’m trying different things to keep in touch. I just started a streaming channel about gaming with a brain tumor. My support groups help a lot. I spend a lot of time with my dogs and my boys. I used to love drawing, my hands shake, and it’s frustrating, so I started painting. Reading is frustrating because of the short term memory loss headaches and focus. Movies I have to re-watch a few times if I want to remember them. I used to be very active, a daily runner (even on vacation), I got to skydive, almost swam with the sharks, but the weather made the captain cancel my trip. They said it was too risky for a shark could get in the cage and that the day before they got stuck in the cove. I still would have gone 😉
I was on the pier and ready to go, yes I cried when they broke the news. I was set to fly back home and they weren’t running any more shark outings. They were done for the season. Those things I can’t do anymore, I can’t leave the house without earplugs and someone with me. Don’t get me wrong. I am very much enjoying my life. Watching my boys grow up and start their adult lives. I would like to train a dog, but I already have two dogs. I can’t drive because of my seizures and memory. When I was driving, I would get lost on the road. I am a lucky girl. I got to marry Ben. I included my wedding picture. My new current goal is to start exercising again. Slow and steady for sure. I fall a lot.
What motivates you?
Life. Life is a precious gift. Family. My family and friends mean the world to me and seeing pain in their eyes when I hurt is what hurts me the most. Also, I can handle this. I feel terrible for children that have to suffer. I do pray to God to let me carry some of their pain. It gives me meaning for having this. I’m enjoying the now, and all the time I get to spend with my Husband.
Who is your personal hero, or are your heroes?
My hero is my husband, Ben. He devoted his life to his 3 boys and did everything he had to in life to keep them safe and give them a healthy, happy life. He has been able to stand strong for me and be the man, partner, love and friend that I needed. I hope I’m the same for him.
What would you say is the most exciting thing you’ve ever done?
My first respiratory job at Johns Hopkins, I got to assist with open heart massage to resuscitate a premature baby after heart surgery. They left his little sternum cracked open for ease of access. He survived. I also found it mind-blowing to get to assist with an external heart-lung bypass used for heart/lung transplantation. He survived.
What is next on your agenda?
My plans are to build my stream to accept donations and possibly one day planning a family trip back to my home town in Baltimore to visit family and friends. I’m only in PA, so it sounds funny, but adding up gas and money for all the outings for all five of us adds up. My boys are a little bit older now and have only met my family at funerals. It would be nice for them to get to know them better.
Tell us something about yourself that people probably didn’t know?
Halloween is my favorite holiday, I love gore, I’m an ‘I’ll try anything once’ kind of girl. I used to have a motorcycle. I have a 3/4 tattoo of a pink cherry blossom tree on my back that I got in my early 20s and used to have nipple piercings. You wouldn’t think that when you see me. I’m also a total Deadhead nerd. I don’t make sense. I spent late nights at Grateful Dead concerts in high school and college and always managed to make my classes with a 4.0 GPA!
I am grateful to Sarah for sharing her story and for showing us how love really can bring us through the worst circumstances. Help Support Sarah’s Go Fund Me Page HERE
Do you know of someone living with a Brain Cancer and inspiring you?