Day 1 - The Phone Call

The call came in around 8:20am on Tuesday, February 19, 2019. It was the physician's assistant at the ENT office. “Sheila, I know we just spoke on Friday about your CT scan results, but I didn’t realize that you actually had two separate scans. One with contrast and one without. The second results just came back and there was an incidental finding on that scan. You have something called a meningioma, it’s a type of brain tumor. The doctor is referring you to neurology. It will likely be something they will just keep an eye on and nothing to worry about. It’s small. Our scheduling department will be in touch within the next few days.” She asked me if I had any questions, but I honestly didn't know what to ask. I never knew anyone with a brain tumor before.


I hung up the phone in complete disbelief. My husband was working from home that day so I sent him a text saying, “I need to talk to you. I’m about to lose my mind.” He comes flying up the stairs, “What’s the matter? Are you okay? What’s going on?” “The ENT’s nurse just called and told me I have a brain tumor.” “A brain tumor? I thought you talked to her on Friday and everything was normal?” “I did. And yes, I was told everything was normal. She didn’t realize there were two parts to my scan and they found something called a meningioma. I’m supposed to wait for their scheduling department to call me because I am being referred to a neurologist. She said it’s not a big deal, but something I need to get checked out.” “Okay. Are you okay? Is there anything I can do?” “No, I don’t think there is anything we can do. Maybe just Google it and see what it says. I’ll just wait for them to call me for the referral. Should I be worried?” “No, I don’t think worrying is going to help in any way. We don’t know anything, except that there is something called a meningioma and we’ve been told it’s not a big deal, so let’s just go on as normal.” “Okay, I think you’re right. We don’t know anything so no use in spending our energy worrying.” The only thing I knew to do was to call my sister. That's what I always do.


The only thing I knew to do was to call my sister. That's what I always do. I sent her a text. “Call me when you have a minute. I need to talk to you.” My sister is my best friend and we now live 7 minutes apart after living thousands of miles from each other for about 7 years. I knew I couldn’t not say something about this to her, as I’d probably need her to watch my son during my doctor’s appointment. She called me right away. “What’s going on?” “So, I was told my CT scan was normal on Friday and the nurse just called me and said I have a brain tumor.” “WHAT?! How did they decide you have a brain tumor after telling you everything was fine?” “She didn’t realize I had two separate scans, one with contrast and one without. The second scan just came back with the incidental finding. It’s called a meningioma. She said it’s small and I shouldn’t worry about it, but I will need to see a neurologist. They will probably just keep an eye on it.” “Well shit. Let me know when they call you to schedule an appointment.” “I will. Will you be able to help with E?” “Yes, of course.” “Don’t tell anyone. I’ll probably only say something if I need to.” “You should probably tell mom and dad.” “Fuck. Do you think anyone wants to hear their child has a brain tumor? I don’t know. Maybe I’ll tell them. I don’t know anything so I don’t want them to worry. It’s probably nothing like the nurse said.” “Just think about it. Maybe figure out when your appointment is and then just mention it.” “Okay, I’ll think about it.”

Later that night, I decided to go down the Google rabbit hole. The first thing that popped up in my search was from Wikipedia. “Meningioma, also known as meningeal tumor, is typically a slow-growing tumor that forms from the meninges, the membranous layers surrounding the brain and spinal cord.^[1] Symptoms depend on the location and occur as a result of the tumor pressing on nearby tissue.^[3][6] Many cases never produce symptoms.^[2] Occasionally seizures, dementia, trouble talking, vision problems, one sided weakness, or loss of bladder control may occur.^[2]

Risk factors include exposure to ionizing radiation such as during radiation therapy, a family history of the condition, and neurofibromatosis type 2.^[2][3] As of 2014 they do not appear to be related to cell phone use.^[6] They appear to be able to form from a number of different types of cells including arachnoid cells.^[1][2] Diagnosis is typically by medical imaging.^[2]

If there are no symptoms, periodic observation may be all that is required.^[2] Most cases that result in symptoms can be cured by surgery.^[1] Following complete removal less than 20% recur.^[2] If surgery is not possible or all the tumor cannot be removed radiosurgery may be helpful.^[2] Chemotherapy has not been found to be useful.^[2] A small percentage grow rapidly and are associated with worse outcomes.^[1]

About one per thousand people in the United States are currently affected.^[3] Onset is usually in adults.^[1] In this group they represent about 30% of brain tumors.^[4] Women are affected about twice as often as men.^[3] Meningiomas were reported as early as 1614 by Felix Plater.^[7] “

“That doesn’t sound terrible, maybe a little bit concerning, but not terrible,” I said to myself. “As long as it’s just a watch and wait sort of thing, it will be fine.” “Maybe I should consider going to Mayo Clinic. If I had to have surgery for some insane reason, I would go there anyways. I’ll talk to Chris and see what he thinks.”