Hollie Ontrop relates her GIST story. Time. It was something I never worried about. Really. I didn’t even think about it. I always assumed I had so much of it and I could spend it at my own leisure. I saw no point in settling, rushing down the aisle or starting a family. I had plenty of time to do those kinds of things, later.
When I met Gary five years ago, he shared the same belief. We were young and wanted to have fun while focusing on our careers.
Then a little over a year ago, time stopped. “It’s a rare form of cancer called GIST,” the doctor reluctantly muttered. I remember every detail—the disbelief, shock and terror. Then came the realization that my life will never be normal again. Gary had cancer. All of our plans immediately changed. Heck, my entire life changed!
I believe it was Oprah who popularized the phrase, “a new normal,” which describes a person’s normal day after a tragic event in his or her life. For me, my “new normal” smacked me in the face when I realized that Gleevec would end any hopes for Gary and I to have children.
It wasn’t until we left the doctor’s office and I was on the way to work that I realized what the Gleevec’s warning label really read. “Do not get pregnant or get anyone pregnant while using Gleevec.” One would have thought that a nurse, a doctor, somebody would have said something about the fact that a young couple would lose the ability to have biological children. But no one did.
I left messages and had conversations with nurses, but nobody could give me answers. The only advice offered was to make sure he took his Gleevec that night. That was a Friday. I finally received a suggestion on Monday, “We should consider banking [sperm and an egg] before starting Gleevec.” This came a little too late since Gleevec can have such immediate effects.
I was devastated. I was mourning the loss of an unborn child but didn’t want Gary to know. He was going through enough and I didn’t want him to feel worse because of me. So I would secretly throw perfectly clean clothes, hit pillows and randomly stop in parking lots to cry, scream and feel sorry for myself. It was my way of dealing (Granted, anyone who drove by me while I was throwing my tantrum most likely thought I was crazy but in a way I was).
Months went by when I would run to the nearest bathroom to cry after seeing a picture of friends’ children or when someone would ask me when Gary and I were going to settle down and have children. It seemed that babies and cancer were the only things on TV and the only topics that crossed people’s lips.
I was a closet mourner. No one really knew. People knew I was going through a lot and would occasionally see a tear shed but no more. At the time I was attending college and interning. I remember my friends, classmates and coworkers commenting on how I was going full speed and no one could believe my strength. I would often comment that there was no time to slow down. I had to keep researching about GIST, attending school, going to work and caring for Gary. I had to appear strong for Gary and myself.
Then I became obsessed. I changed from Gary’s girlfriend to Gary’s mother and live-in nurse. I needed to absorb all the facts and information I could. If I was at home, I was on the computer reading about GIST or asking Gary if he was feeling okay. If I was at work or school, I would sneak off to research or call Gary. It was driving him crazy. He would often say if he wanted to live with a mother he’d move back to his parents. I would just blame it on denial.
Looking back, I was actually more in denial then he was. Not about cancer but about us ever living a half-way normal life again. I thought the joy in my life was over; I couldn’t see past the cancer.
I had to deal with insurance, medical bills, prescriptions and doctors, things that I really never dealt with before – at least not to this extent. And no one would take me seriously, probably because of my age.
Finally I ran across Cynthia, an insurance agent, who understood me. She knew I was scared, confused and usually had no clue how to handle things. We’d spend hours on the phone and together we’d call doctors’ offices to figure out what was going on. She’d tell me secrets of the trade, how to get straight answers and ways to save money on all of Gary’s tests. More importantly, Cynthia would ask me how I was handling everything. It was something that most people I knew forgot to do. They all assumed I was handling it fine because I appeared to be. I still call Cynthia if I have a question and she’ll ask, “Are you holding your ground?”
Once August came, I was starting to get the hang of everything and the “new car smell” of Gary’s cancer was wearing off. I focused on school; I was graduating at the end of September, which was good for us. With most of my attention being on school, Gary and I once again became the couple we were before GIST. I remember getting into an argument with him and afterwards I started to laugh. I thought, “Finally.” I was never as happy to fight with him as I was then. For me it was a sign that I was comfortable. I’d stopped mothering and protecting him so much and instead I was ready to let him live and give him a piece of my mind. I try to have a more positive attitude these days. When Gary is too tired or sick to go hangout with friends, I tell myself it is a chance for me to focus on myself and have fun. If Gary falls asleep at eight, I spend the evening doing things I enjoy.
We’ve started to once again focus on the future and the time we have together. We talk about places we want to live and the things we want to do with our lives. We’ve started traveling a bit more and actually doing things we’ve always wanted to do but never had the time. Gary and I learned that it doesn’t matter how much time you have – it is what you do with that time that counts.