A few days after my surgery, I was out for a short walk with my ICU nurse, Chris. Chris held my hospital gown closed as I shuffled along. We were about a quarter of the way around the ward floor and I mentioned that I was wondering when I would get the word on whether my brain tumor was benign or malignant. She stopped and asked, “Didn’t you hear?”
“No.” I told her.
She said, “Your tumor is benign. Do you know what this means?”
“Yes. It means it wasn’t cancerous,” I replied with tears welling in my eyes.
She said, “No, this means you will get to see your grandchildren.”
We hugged and both sobbed there in the middle of the hall.
* * *
I honestly don’t remember how long I was in the hospital, but I do remember going home. And hurting.
The incision on my neck went from the base of my neck up to about the middle of the back of my head. My headaches were still as bad as ever and sleeping was excruciating. I couldn’t do stairs or turn my head. Both my mom and mother-in-law stayed with us for a month. I couldn’t take care of myself let alone the kids, so we needed help. (This is a concession that was difficult to swallow, but I am thankful for family and friends who lightened our load over the next four months.)
About two weeks later I felt funny. My neck felt sweaty and wet, and in fear of an infection I was asking everyone to please look at the back of my neck and head. Everyone said it just looked wet.
I woke up and couldn’t turn my head. My neck was so swollen that it was impossible to decipher where my chin ended and my neck started. And the back of my head was saturated.
After an emergency phone call to the neurosurgeon, we made the trip down to the doctor’s office. When I got in there, he squeezed the back of my neck and said “uh oh.” Of all the people in the world you want to hear say that, he was the last on my list.
Unfortunately, what I learned was that a fraction of brain surgery patients has a ventricle that fails unrelated to the operation. I was told they don’t know why it happens, but as far as this went, I had hit the brain surgery lottery. My tumor was located beside the fourth ventricle, but number two had called it quit. This landed me right back in the ICU with another drain for extreme hydrocephalus. They also decided that a lumbar drain was necessary which meant a tube that ran from the base of the spine around to the peritoneal cavity. And the doozy: a permanent VP shunt.
My doctor asked me if I wanted all of my head shaved or 2/3 of it. All I could picture was a lopsided ponytail off the side of my head, so I opted for all of it. Nothing could have prepared me for how the following days altered my appearance: I had no more hair, a temporary drain was coming out of the top of my head, and when the doctor determined that the fluid in my head had been regulated, a VP shunt was implanted. I called this “Star Trek Head” as it resembled some alien being on the one side from the shunt itself and all the swelling. Physical scars. Startling is really what it was.
I went home and started over at zero station for recovery. I now had two new incisions in my belly and back: one from the shunt and one from the lumbar drain. I could no longer lie on my right side because the shunt made it more than uncomfortable. My neck still hurt and those blasted headaches still had a vice-like grip on my head.
Sometime in March of 2008, I finally made a turn for the better. My neck became stronger. My hair had started to grow back, which I called ‘Chia Pet Hair,’ and my ‘Star Trek Head’ made for some interesting conversations. My sister sent me some wigs which I chose not to wear – I just didn’t quite myself in them. I began taking small walks down our little street and becoming social again and slowly gaining on my new, new normal.
However, I missed those kiddos in my classroom. They were a vital part of my normal and I desperately wanted it back. In April, I was well enough to go for a visit to my school and see my kids. Teachers fall in love with each and every one because of their strengths and battles. They become a part of who you are as a person. These kiddos had been a source for courage and tenacity and I wanted to be back with them. The visit was just the medicine I needed to keep plugging on, and at the end of April I was allowed to return for half days. However, my daughter was in my grade that year and one of the things we had looked forward to was going on the fifth grade overnight camping trip together. The tumor robbed me of that time with her, and I still carry that weight around in my heart that I didn’t get to be with her. Again, another scar that you can’t see, but it’s there.
Despite the incremental improvements, my headaches just couldn’t be beaten. The shunt had been adjusted and readjusted and no setting made a difference. My baffled doctor decided one last course of action: another surgery to tie off the lumbar drain.
In May, I went in for the outpatient procedure to have the drain tied off. I remember being scared of the surgery that morning and it struck me how unafraid I was of the original brain surgery, in comparison. Odd how pain can change your perspective.
After a fairly short procedure, I awoke in the recovery room to the same old headache and a look of despair on my husband’s face. We left the hospital defeated and deflated that the headaches were going to be a permanent part of our new normal. I went home, closed my eyes, and napped, exhausted from the day’s procedure.
When I woke up and opened my eyes, I had an unfamiliar feeling. I laid there wondering if I was imagining it, sat up slowly, and realized that, for the first time in nine months, I didn’t have a headache! I could look up and down without pain. I could turn my head. It was gone, just like that. And I haven’t had one of those horrific aches since.
* * *
In the five months that I spent in and out of the hospital, we had family and friends who took time away from their families to take care of ours. Meals were delivered. Kids were driven to activities. Lots of love and support was given to our family. And I can never say thank you enough to them.
About a year and a half ago I was in Florida for a conference and a friend convinced me to do a 5K. It wasn’t pretty because up until then the jarring motion of running or even a slight jog sent my neck into spasm. I finished with unimpressive time of 42 minutes. But I finished, and that was only the beginning.
I started walking and/or jogging every day, and in May of 2016 ran my first full race in over ten years at the Race for Hope – D.C., in our nation’s capital. I cried for the first ten minutes because I was there and I was jogging. Me! I finished in 31 minutes and my son swept me into his arms when I crossed that finish line twirling my survivor shirt over my head. This was the best hug of a lifetime. This has inspired me to run a 5K every month with a goal of doing one in all 50 states. It will take time, but I know I can do it.
This is my new normal. I am a daughter, a wife, and a mom who had a brain tumor. My hair grew back but isn’t long enough to cover my scars.
After all, they tell my story.
Note: the cover photo used for this series is a candid shot captured by Race for Hope – DC’s official photographer in 2016, as Sarah finished the race and was greeted by her son, Sean, who was there to cheer her on. This series began when Sarah reached out a few months after Race for Hope 2016 to ask if we could find this photo for her from our photographer. When the photo was found, she responded:
“I have sat here in sweet tears relishing that the Race for Hope exists and that you captured a victory in several photos…This moment from the Race was one of those pivotal moments in life that you remember: I ran for the first time in nine years, I beat the tumor, and I got to hug my son at the end of it all. A great day indeed.”
The caption she provided for the photo sums it up even more succinctly: “Best Hug Ever!” The picture truly does speak a ‘thousand words,’ yet Sarah’s words make it that more powerful. We hope you enjoyed, and found inspiration, in her story as much as we did!
*#Takethattumor is a hashtag that Sarah is using to chronicle all her social media posts related to this year’s Race for Hope – DC. You can visit her Facebook page directly by clicking here.