A Tumor Named Wanda
The first time I temporarily lost the ability to breathe was at a comedy show in December 2018. I threw my head back in laughter and was greeted by a sharp pain and inability to breathe. As soon as I sat back up straight, the pain went away and I could breathe again. This happened a few more times, each when I tipped my head back to laugh. The seat backs were about kneck height for me, so I figured I must be hitting my head on the backs when I laughed and not noticing. I spent the rest of the evening making sure I stayed upright when I laughed.
I don't know how many more times I had such episodes over the ensuing months, but I do know I chalked them up to stress. We were having a horrible experience with a new home we were building, yet were also homeless after already listing and selling our current home. This resulted in us putting most of our possessions in storage in CO while we and our two large dogs moved in with my in-laws in AZ. We eventually got out of the home we were building, but then had to go back into home buying or building mode while also deciding if we should stay in AZ or go back to CO. We eventually settled on building in AZ, so on top of the stress of a build also had to get our belongings moved from storage in CO. This was an experience fraught with issues, delays, items lost, etc. During this time my husband developed a hernia that needed surgical repair. Of course I was stressed, and stress can absolutely manifest in physical symtoms.
Finally, in July 2019, things were feeling more settled. My husband was on the mend, we were in our new home, we had largely unpacked those boxes that did make it safely from CO to AZ. And yet, my episodes persisted. After I crumpled to the floor during a bout of laughter, my husband (God bless him) at last convinced me that I needed to see a doctor.
I'll forever be grateful to our primary care physician in AZ. I'd passed my physical neurological exam. My CT scan didn't show any abnormalities. And yet, he kept digging for answers when others may have dismissed me or wrote a prescription for painkillers or anti-anxiety meds, etc. Rather than sending me on my way, he referred to me a neurologist. The neurologist sent me for an MRI. That MRI changed everything.
I was sitting at my desk, working from home, on Tuesday, September 3rd, 2019, when my phone rang. You know it can't be good when the neurologist himself calls you direct saying he needs to see you that same day. By the time we got to his office, I can't say I was surprised to hear I had a brain tumor. It was at the base of my head. My episodes were the result of it putting pressure on my brain stem when I tipped my head back.
Two days later, I was meeting with a neurosurgeon. We could remove it now while we still had some control, or wait until my episodes became more frequent and prolonged resulting in the need for emergency surgery to alleviate the pressure it was causing. We called our families. My mother flew out from MN. I named my tumor Wanda. Giving it a name made it easier to talk about. And on Friday the 13th of September 2019, I went in for surgery.
My neurosurgeon removed the equivalent of a golf ball with a grape attached to it from my brain. A few weeks later I started a 6-week course of receiving radiation 5 days per week. I lost my hair and started lotioning my scalp. I went on anti-nausea meds. I discovered what headwraps I liked and what I didn't. I got used to the looks and the questions.
It's been 5 years since my diagnosis. We're back in CO. My hair has mostly grown back. I do still have some bald patches around my scar, but it's now long enough to hide those. I've graduated to only having annual MRIs. I get anxiety leading up to each one and am flooded with relief when my doctor says there are no signs of Wanda regrowing. I pray this good news cycle continues.
I walk for those who weren't as fortunate as me, who live on only in people's memories. I walk for my fellow survivors. I walk for those who may not even yet know they've got a battle ahead of them. I walk for me.
I am uniting with others to make a difference in the fight against brain tumors. I am passionate about this cause, so I’m taking action. I need your help in this fight. National Brain Tumor Society will not rest until a cure exists - but more needs to be done. Please join in my effort!
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National Brain Tumor Society is fiercely committed to finding a cure for brain tumors. They are aggressively driving strategic research; advocating for public policies that meet the critical needs of the brain tumor community; and providing comprehensive patient, family and caregiver resources. Your support ensures this important work will continue.
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