The Whole Story: Part One - The Call That Changes Your Life


    In honor of the one-year anniversary of hearing I have a brain tumor I am launching a series today that will cover the whole story. You may have heard pieces of it here, on Facebook, or even in person, but this will paint the whole picture in one place. It'll take a while to unravel the full tale, but I wanted to break it up into digestible bits. I hope you find it is worth the wait. You may find some of it familiar as I have reused pieces of some former blog posts, no sense reinventing the wheel!


Part One

We see it in movies and TV shows, but we always hope it will never happen to us. The phone rings and it's someone unexpected, a police officer, a relative, a doctor. They give us news we weren't expecting, and from that moment on our lives are forever different. And it's not just our future that's different. We begin to define our past as "before" and "after" this life changing news. 

I got the call on Monday, February 27th, 2023. Ironically, it came just two days after the anniversary of another one of those calls, the one letting me know that my brother had died unexpectedly at the age of 40, two years before. This time it wasn't my Mom calling, it was the ARNP from my neurologist's office. She was calling me at 5:30 at night the next business day after I had had a brain MRI. Right away I knew this wasn't going to be another, "Everything looks fine, we don't know why you're in pain all the time," call. That news usually comes in a appointment weeks or even months after the test when you've practically forgotten about it already. When they call you at night the next day, it's never good news. 

It took a while to sink in.

At first the words didn't make sense. It didn't help that the person I was talking with had a heavy accent and I really struggle to understand people on the phone in general. I'm very visual and I think I read lips more than I realize. But as I discerned through the accent, the words she was using were either completely new to me, or they didn't make sense. She started by telling me that some of the structures in my brain looked good. This is the kind of news I'm used to getting so I think it lulled me into a false sense of security. Then she began talking about finding a lesion. I thought lesions were skin sores and figured I must be misunderstanding her. She went on to say that they thought it was a sub ependymoma. Well that was definitely not a word I had ever heard! She said that she was going to put in a referral to neurosurgery and they would help me to decide what my next steps would be. Now she had my full attention. Neurosurgery was definitely a word I recognized, I watch WAY too many medical dramas. But never had I thought that I would be hearing it in the context of someone possibly cutting into MY brain! She assured me that just because I was seeing a neurosurgeon didn't necessarily mean I was going to have brain surgery. The tumor was only a grade 1 and they may decide to follow a different course of treatment. And there was the word that finally brought everything into focus, "tumor." I have a brain tumor. How things jumped from lesion to tumor I have no idea, maybe I'll understand it all by the time this stuff is over, but at that time everything seemed to get fuzzy. 

My husband was out serving the homeless with the local mission, and this isn't the type of news you give someone you love over the phone if you can help it, so I couldn't talk to him about it yet.  I spent the rest of the time until my husband got home consulting Dr Google. I learned that a sub ependymoma is a rare form of ependymoma, which is a rare form of tumor typically found in the brain or on the spinal cord. 

When I kept seeing the word "rare" I got curious and focused my search on the odds. It turns out that they find brain tumors in about 2% of the typical autopsies, so I took that to mean that on average 2% of people, or 1 in 50, have a brain tumor during their life. It's probably a little more because they find some of them while people are still alive, but that was the best number I could get. Of those 1 in 50 people that get brain tumors, about 1.9% of them are ependymomas. And then of those people that have ependymomas, about 8% of them are sub ependymomas. My math skills are a little rusty, but as far as I can figure, the odds of getting a sub ependymoma is about 0.00304%. That's not very likely. Pair that with the 1 in 5,000 chance of having EDS and I am certainly a mathematical improbability!

When my husband got home, I shared the news with him as I understood it at the time, and we've been slowly processing it ever since. 

It's tough for a lot of reasons, but the biggest one immediately is what little information we have. After some targeted, careful internet research only on good sites that I have a history with, I learned that many neurosurgeons take a, "wait and see" approach to this type of tumor and others feel the need to get it out by the end of the week. I also wasn't encouraged by the anecdotal information about the post surgery prognosis. Many of the people who had surgery spoke of needing to relearn how to swallow, talk, and even walk. They mentioned having to lay still in a dark room for months because they couldn't handle any stimulation. And, to my knowledge, none of them had the surgical complications common to people with EDS. 

I hated how long it was taking to find out what the situation was and what the next steps were. I hate wondering and, yes, I'll admit it, worrying. I called the neurosurgery clinic on Tuesday to see if I could schedule, but they said that the medical staff had to look over the referral and see which doctor they wanted me to schedule with. I asked when I should call back if I hadn't heard from them, and she said Friday. On that day, since I hadn't heard from them, I called in the morning. The person I spoke with said it was a good thing I had called because there was a note on my chart assigning a doctor and saying I needed to see him ASAP. Unfortunately, he couldn't figure out how to schedule me with him and the clinic wasn't answering his call so he left a message and hoped they would get back to me that day or the next Monday. I left that conversation a little shell shocked, and really antsy to get something on the books. Later that afternoon, I tried the clinic again, and while I was on hold, their scheduler called me! She was able to put me on the doctor's schedule for the next Wednesday. That still seemed really far away, but at least I had a date and time.

Here's the thing: The reality is I've had this tumor for a while, perhaps quite a long time, but it didn't matter at all until I knew about it. Once I knew it changed my life. I could never unknow it. 

The Whole Story:

Part One - The Call That Changes Your Life
Part Two - When "Wait and See" Wouldn't Sound so Bad
Part Three - Reflecting on My (Almost) Presurgery Week
Part Four - Living in the unknown
Part Five - Taking Opportunities as They're Given
Part Six - The Big Event
Part Seven - How Many of you are There?
Part Eight - Beginning the Journey of Recovery
Part Nine - The Unimaginable
Part Ten - I guess that's better?
Part Eleven - A Day in the ICU
Part Twelve - Long Haul ICU
Part Thirteen - Hair Today, Gone Tomorrow
Part Fourteen - A Soft Discharge
Part Fifteen - The End of the Chapter

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