My name is Rissie Parker, and I was diagnosed in March of 2019 with chordoma – a rare type of cancer that can appear on the spine, tailbone, or brain areas.
I am a stay-at-home mom of two children, ages 10 and 12, whom I homeschool. Around the beginning of 2019, I started to notice that I wasn’t able to write and use my right hand as well as normal during our daily activities. Gradually, I began to see more limitations, all on the right side of my body.
I had an MRI done, and the doctor told me it could be either chordoma or sarcoma, but they wouldn’t know for certain until they could do a biopsy. They told me there was a mass from the base of my skull down into my neck and that I would need not just one but two brain surgeries. After those were complete, the doctors would make recommendations on the best treatment plan. Needless to say, this was all devastating news. I had to have faith because I was out of my element, and I knew I had no control over what was happening to my body. I trusted God and knew that He would lead me to the right doctors and the right places.
DIFFERENT DOCTORS, DIFFERENT RECOMMENDATIONS
I had my surgeries in Texas, where they determined it was chordoma after the biopsy. They told me that the best treatment would be to have the second surgery to remove the tumor and then treat the area with radiation. The team that performed my surgeries recommended proton therapy instead of traditional radiation because of proton therapy’s precision and the delicacy of the treatment area. The tumor was partially on my brainstem, which can be especially risky. I returned home to Oklahoma, ready to begin that part of my treatment journey.
When I went to my first appointment with the oncologist in Oklahoma, they disagreed with my surgeons in Texas. They told me that traditional radiation would be better for me than proton therapy. Wanting to follow the doctor’s advice, I agreed. But after two treatments, I didn’t feel right about it. The experience from my two brain surgeries had taught me that there’s a sensation you get throughout your body when your brainstem has been touched. It made me uneasy that I was feeling it again. After the third treatment of traditional radiation, I was experiencing horrible pain. I began asking questions. Should I be feeling this way, is this pain normal, should I be experiencing symptoms this soon? The staff did little beyond brush my concerns aside – and I knew I was going to have to make a decision for my own health and quality of life. I refused to be just another number in someone’s book. I wanted to be treated somewhere that cared and acknowledged me as a person. Something had to change and quickly.
STANDING UP FOR MY HEALTH AND MY FUTURE
Before my next treatment, I just said no. I simply decided no more traditional radiation. Not knowing what to do next, I reached back out to my surgical team in Texas. They again said conventional radiation was too risky for me and that I needed proton therapy. They connected me with the proton center in Texas, who referred me to Oklahoma Proton Center. I know that it’s because I made that decision that I am here today. I kept thinking, ‘I have two kids, I have a family, and I want to be there for them.’ I knew if I didn’t say no to traditional radiation, I might not be. And that’s what compelled me.
FEELING THE DIFFERENCE
I spent my first day at Oklahoma Proton Center learning about proton therapy from the staff. It was amazing to be informed and educated at such an exceptional level. They took the time to answer all of my questions and explain the science behind proton therapy and how its benefits would translate into my life. I was never rushed out or made to feel like what I was going through wasn’t a big deal. They made me feel comfortable and loved and welcomed, and that’s what mattered to me.
The difference in the way I felt after my proton treatment vs. traditional radiation was tremendous. There is no comparison. I had no pain, and I knew beyond a shadow of a doubt they were not treating places in my body that didn’t need radiation.
THE REASON I SHARE
I’m now over a year out of my treatment, and it’s been an amazing journey for me. You cherish each and every moment of the day because you don’t know how many of those days you get. I am back to riding my horses and doing things I never thought I’d do again. I am so very grateful that I stood up for myself. If my story can help someone else have the courage to do the same, it’s worth it.
You are the only one who can stand up for your life and your future, so make sure you understand all of your options and make the decision that gives your heart peace.
If I could share one thing with someone facing cancer, it would be, stay focused. I know it’s overwhelming, but do your best to get your mind right. It’s a journey to get there – but please don’t quit along the way. It’s ok to be tired, or mad, or sad. But keep fighting, and one day you’ll see yourself on the other side. Even though you might not see us all, we are cheering for you!