Introduction: What follows is the first entry from a brain tumor journey told in three parts, and her own words, by survivor, Sarah Vannatta. Sarah is Senior Vice President of EconomicsPennsylvania, where she is responsible for curriculum development and writing, teacher workshops, and program delivery. She lives outside of Pittsburgh, Pennsylvania.
Part 1: New Symptoms, New Normals
For some, their tattoos tell their story.
I don’t have any tattoos. But I do have scars. And my scars tell my story.
What follows is my story – scars and all. And though this story is mine, and though I know it well, the journey seems almost foreign. Recreating this story for the first time in writing was almost like following the trail of a map given in error and coming to the realization that where you were planning on being suddenly changed.
Back in the late summer of 2007, I had just completed my first full year of teaching after a six-year hiatus to stay at home with my growing children. But, I was finding myself exhausted. Not, ‘I just need a nap, tired,’ but rather, couldn’t-move-after-work and ten-hours-of-rest-wouldn’t-fix-it, exhausted. This fatigue was all the time and I just couldn’t seem to recoup. However, I chalked it up to my added duties of full-time work, while still being a full-time mom and carried on best I could.
As the new school year began and I was once again back to mom’ing, teaching, chauffeuring, and life in general, when a peculiar, subtle ache – not a pain – appeared in my left cheek. I told my husband, Mike, and we thought I was probably coming down with a sinus infection. During a visit with the doctor the next day, I was diagnosed with allergies and given meds. Odd thing was in all my life I have never had any allergies to anything – never a sniffle or a hive. Regardless, I took the medicine, but the sinus pressure never eased up, even though I went on a few visits to my primary care provider (PCP), and different medicines tried.
The ache — constantly there — grew into a ‘new normal.’ Then a new symptom appeared. I now had a ringing in my left ear. It was very soft at first, but then seemed like someone was turning up the volume knob just a little every day until it sounded as if a loud rock concert had taken place within my ear. This became yet another new normal for me, one of many still to come.
Shortly after the ringing started in my ear, my favorite soda, Diet Coke, suddenly took on an acrid flavor. After four rejected cans, I poured the rest of the pack out and blamed a bad batch for the taste. I bought another twelve-pack but the same thing happened. Those were the last cans I would open for the next eight months.
Nearing the end of September, the exhaustion was taking over. I was sleeping in the car after dropping my daughter, Emily, off at gymnastics or my son, Sean, at tennis. I missed watching those precious practices for backseat snoozes, making sure to set an alarm to muster up enough energy to go in, get them, and hear about a new skill developed that I had missed. There are many little moments like this that I will never get back – one of those many scars on my heart that you can’t see but are there.
Now mid-October, I went back to my doctor, feeling completely depleted of energy, with a building pressure in my cheek, and a constant loud ringing in my ear. These symptoms were now so prominent I would lie down on the bean bags and close my eyes to try to escape the pain when my students would leave the classroom for specials or lunch. An antibiotic was prescribed, but symptoms progressed. Instead of just diet soda tasting funny, many foods lost their flavor for me, and I began to lose weight. The lack of food only contributed to my waning energy, so I found myself sleeping ever more often when I could. Where I was once outside with my kids, I was relegated to the couch because I couldn’t even make it to the bed to sleep. Noises hurt my head so our once happy-child-noise filled house was quiet.
Towards the end of October when I had almost finished the antibiotic, a frightening new symptom appeared: I became dizzy. This vertigo was like that from spinning relentlessly on the playground roundabout, except I wanted off and couldn’t find a way to make it stop. This affected my ability to see and calculate my steps appropriately, so I walked like I had been on a horrible drinking binge. My feet crossed when I walked and I staggered my way around all the time. Driving was difficult, and upon deciding that I wasn’t safe to be behind the wheel anymore, my husband began driving me with the kids to school.
In the beginning of November, I returned yet again to the doctor, with the mounting pressure in my cheek, the persistent squeal in my ear, and the nauseating dizziness consuming me. I was prescribed another round of antibiotics. But the slow decline continues, as two new strange symptoms reared their ugly heads.
First, I started forgetting simple words and was frighteningly aware that I was doing so. One day when I was teaching, I couldn’t remember the word “dog.” I knew what I wanted to say, even commented that it was the opposite of cat, but for the life of me I just couldn’t remember the word dog. Second, was the appearance of debilitating headaches. Up until this point in my life, I could literally count on one hand the number of times I had experienced a headache. However, this one showed up as a full skull ache and would occasionally radiate up and down my neck. I stopped looking down, because when I looked back up it caused a lightning bolt of pain to shoot up my neck and over my head. Those thunderclap headaches knocked the breath right out of me and would stop me in my tracks.
Now I was truly scared. My energy was gone, I wasn’t laughing anymore, and teaching had become an almost unbearable chore. This faceless monster took the simple joys of my life away: the kids had to be quiet in the house or play outside, I wasn’t the loving wife who enjoyed cooking and conversation that I used to be, and my passion for teaching was gone. Everything was difficult and I simply didn’t have the energy for any of it.
When the Christmas season rolled in it brought with it double vision. It was like looking through a split screen where everything from my right eye was three feet higher than what my left eye was seeing. The headaches now had a solid hold on me. Much of my time was spent with my eyes closed pushing on my own head to try to alleviate the pain. Nausea became a constant and I stopped eating. I vaguely remember going to buy our tree and trying to muster a smile for the kids. Their wide-eyed wonderment had turned to looks of worry and apprehension for their mommy. They wanted their normal back, too.
We drove to Pennsylvania from Arkansas that year. Usually I would’ve had Christmas music blaring and been singing along with the kids to our favorites. This year I had a pillow on the console and spent the trip pressing my head into it to counter the massive pain in my head. The kids weren’t allowed to laugh at videos they were watching, and every bump in the highway was like getting hit in the head with a hammer over and over.
Upon our arrival, my mother took one look at her emaciated, ashen daughter and scheduled an appointment with an ENT. But it was December 23rd and nothing was available until the 26th. The next two days are a mental blur as I tried to sleep most of the time while there was a chorus of people celebrating the season in the background. I got up on Christmas day for a short while, but had to go back to bed. My head hurt and having my eyes open was genuine agony.
The day after Christmas my husband took me to see the ENT, as planned. The doctor wanted to do a full head and neck CT scan but I talked him out of it. After all, it wasn’t my whole head where I had the pressure, just in my sinuses. So a CT scan was ordered for my sinuses only and more antibiotics were prescribed, this time with prednisone.
We left Pennsylvania and drove back to Arkansas. After completing the antibiotic and the prednisone, my descent started again. This meant a return visit to my PCP where we learned that the sinus CT was clear and that another round of prednisone and a nasal steroid was in order. However, my life was now limited to lying face down on a couch or floor pressing my head into my hands and gripping my head to combat the agonizing pain. I was truly worried that I would never escape this pain in my head.
On January 18th, 2008, my family and I went to a University of Arkansas Lady Gymbacks gymnastics meet. As we watched, I could feel one of those horrific thunderclap headaches building, but this one was frighteningly different. The pain was crawling from the base of my spine slowly up my back. I told my husband and we left immediately. I was completely in fear of what was coming.
When we arrived home, the pain lurched up my neck and around my head, hanging on with a vice-like grip. I started retching from the pain and for the next 17 hours I didn’t stop. I laid on the couch getting sick in plastic bag after plastic bag furnished, held, and disposed of by my husband.
At 2:00 the next afternoon, that exhausted man carried me to the car and loaded me in, headed toward the emergency clinic. I couldn’t even walk at this point and needed help getting inside. The doctor listened to my story. His diagnosis was multiple sclerosis (MS), but he told me we would have to have a full head and neck CT to rule other causes out. However, we’d have to wait for an appointment at the imaging clinic.