My Unexpected Adventure with a Brain Tumor–Part 2 (Diagnosis)

The idea of an order for a brain MRI kind of freaked me (and my husband) out, but I made the appointment and jumped onto the internet to learn about vestibular disorders and what I might be dealing with.  Little by little, I ruled out most of the disorders I came across because the symptoms didn’t match that well.  I read about acoustic neuromas, and the more hospital links, patient reports and medical papers I clicked on, the more convinced I was that I had one. Never mind that it is SO rare that only 1 in every 100,000 people has one; I was absolutely positive that I was that ONE.  (Somebody has to be, right?!)  I just felt absurd telling anyone else because I knew no one would believe me.   I finally mentioned it to my husband in the midst of our planning our next vacation.  I said, “Let’s just wait on booking anything until after the MRI.”  He cringed at the thought and said with a totally reasonable amount of disbelief, “Because you have a rare brain tumor and will be having brain surgery instead?!”  I joined him with a cringe and said, “Maybe.  It really fits better than anything else.”

So, finally came the day of my first-ever MRI.  I was so sure that it was a tumor, and I was scared and overwhelmed to be accepting this reality, but I practiced breathing deeply and tried to relax through the bizarre (and LOUD!) imaging process.  The techs on duty said that they got excellent pictures, but they wouldn’t give me any details until a radiologist made a report the next day.  I messaged the ENT doctor through the online health portal first thing the next morning and was willing to look like a crazy fool  (like so many people do when they diagnose themselves with rare ailments based on their internet research). I said, “I am willing to put money down on my self-diagnosis of an acoustic neuroma.  I am desperate to know the results, so please feel free to message me here if you can’t reach me by phone.”    A few hours later I got 2 phone calls and a message that it DID appear to be a large (3 cm x 3 cm) acoustic neuroma (AKA vestibular schwannoma), and I was being referred to see a neurosurgeon the next day to discuss treatment.  I felt a little relieved to have a concrete diagnosis, a little excited that I was correct (I should have put money down!), and deeply shocked and overwhelmed that this was happening in real life.

This all occurred while I was out having a lunch date with my kids the day before school started, and running last-minute back-to-school errands.  There are some superpowers that come with parenting; in this case, I was able to stay calm because I didn’t want to freak out my kids.  I did manage to distract them, and I made an appointment with a neurosurgeon while standing outside Supercuts, just before heading to Bed, Bath & Beyond for a new lunchbox.  (It was a surreal and strange sequence of events, to say the least.)   I texted my husband a photo of the message from the doctor, as he was waiting on the edge of his seat all morning at work, too, and we both proceeded through our days until we could privately hug each other in a state of mutual shock and fear a little later that night.

This was the week my son was starting high school, where my husband was also busily preparing for a new year as the principal.  My daughter would start her first day of middle school at a new school the following week, and I was about to start production for my biggest work event of the year.  We already were gearing up for our particularly intense shifts from summer to fall, but not so much knowing how to work in “the brain-tumor-diagnosis-for-Mom” plan.   Life hadn’t thrown us a gnarly curve ball for a few years, so I guess we were due.

FullSizeRender (27)

That large, white mass is my brain tumor (as you might have guessed).

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