April 6: The First of Many New Experiences

I’m sitting at my desk, feet aching and listening to bootcamp downstairs.  We had a major group of people visit my company (like 80, plus their Global CEO) and so I’m just a little tuckered out.  And due to the complicated nature of my dress, I’m sitting out on bootcamp today.

My presentation on aphasia and paraphasia went well, despite my anxiety about stammering and embarrassing myself in the middle of it.  People asked me questions after and congratulated me on how well I did.  Whew!  Days of preparation in five minutes of execution – just like a gig.  I went first and got it over with.  The only thing I felt could have been better was my example of Broca’s aphasia, where I purposely spoke haltingly to demonstrate how people speak when they have this disorder.  I don’t think it was dramatic enough, which is funny because I actually had it pretty bad once.  And still do, but only mildly now.  Among other little things, which is why I started the therapy for real instead of relying on online games that profess to improve your intelligence.  Oh, what a fool I was!  But it works out better now that I can drive myself  and not rely on my husband, who had already taken enough time out from his work to take care of me.

So there’s that.  Now, this:

They woke me up about midnight and I was taken to get my MRI, which was most likely on the same floor where the CT scan took place.  Now this I had never gone through.  I had heard it was loud and took a long time, and people with claustrophobia didn’t do well with it.  I didn’t have such a phobia, and so decided I would get through it just fine.  Besides, I was still groggy from the restless night I was having and hoped to snooze through the whole thing.  Because let’s face it – you don’t actually get any rest while you’re at the hospital.  Every few hours, someone is checking if you’re still alive, or giving you medication, or taking blood.  Or someone is screaming bloody murder down the hall….

The MRI was, in fact, very loud.  Imagine trying to lay quietly and not move while construction level noises are going on around you, and waiting patiently until it’s over an eternity later.  A rhythmic clanging took place every time it took an image, and while they offered me Pandora through headphones (I was very lucky to have Court of the Crimson King come up) it only helped if I concentrated very hard on the song:  

CLANG CLANGThe purpleCLANG piper CLANGplays his tune,CLANG the choir CLANGsoftly sings,CLANG three lullabiesCLANG in anCLANG ancient tongue, CLANGfor the court of CLANGthe Crimson King!

And then it was done and they returned me to my room, where I attempted sleep for another few hours until the doctor arrived.  I also attempted to order breakfast over the phone.  I had one hang up because I couldn’t get the words out (which was all kinds of awful) – then I wrote it down and used my notes to successfully order.

My husband returned to my bedside a little later.  He hadn’t gotten much sleep, and was already surviving on pure adrenalin and worry.  The doctor then arrived – not at all like my preconceived notions of a neurosurgeon.   First of all, she was younger than I expected – though by that time I should have been used to seeing youngish doctors.  I had envisioned an older person in a white lab coat with no sense of humor, but she walked in with a North Face jacket and looked quite approachable.  She was accompanied by another woman who was introduced as her assistant.

She told us it did look like a meningioma, a benign tumor, and confirmed its size equivalent to a baseball, but with larger, more accurate measurements than the day before.  Fortunately, she added, it wouldn’t be hard to remove as it was placed in a very operable location, and she had done many operations like it with success.  My surgery would take place the following day at 4:00 pm and probably take 4-5 hours.  I would probably spend a day or so in ICU recovering, then get looked at by a speech pathologist and an occupational therapist who would determine my follow up therapy.  

“Do you have any questions?” she asked, addressing both of us.  My husband asked the one concern that was on both our minds.

“Do you know for sure it’s benign?  Is there any chance it’s cancerous?”

Her answer was very reassuring.  “Not likely.  The majority of meningiomas are harmless until they start making some trouble – like in her case, when it was large enough to cause headaches and vision problems and muscle weakness.  But we’ll send a sample to pathology and have a biopsy done just to make sure.  That could take several days, but we’ll send it during the operation so they can get started.”

I was satisfied – cancer was unlikely, though not entirely ruled out, so just get through the surgery.  I decided my physician was trustworthy, nice, and seemed very experienced.  She immediately instilled confidence in us that all would be well.  I noted her name on the handwritten assignment board in front of me, which I kept mixing up with my husband’s cardiologist whenever someone asked me the name of my doctor.

The rest of the day was spent emailing.  This  included a nonchalant email (subject line: Best Excuse to Avoid Opening Day) to my workplace, sharing the news with former recent bandmates, cancelling my hair appointment and any upcoming cake orders.  It was very surreal typing  “found a mass over my left frontal lobe” and realizing I had no previous experience with this sort of thing, though I’d had my share of hospitals and surgery in my life.  My husband had found “20 Things to Expect After Brain Surgery” which was helpful. But  would I come out myself in the end?  What would happen to my thoughts, my personality…the me that was Me?

My mother asked if I wanted my twin brother to come in from Chicago, and I said yes without hesitation.  If this was the last time he’d know me in a normal state, then he’d better come now and not after the operation.  Some other friends asked if they could come but I had already taken some medication and expected to be too groggy to communicate, so I said no, better come tomorrow if you can.  Plenty of time before the operation to see me before I turned into a drooling vegetable, I thought morbidly.  

So I emailed, texted, slept, visited with my mom, slept again.  In the early evening I was surprised to hear my bedside phone ring.  I picked it up, hoping I could speak clearly as I was slowly losing that form of communication.

“Raquel?” A low male voice, unsure.


One thought on “April 6: The First of Many New Experiences

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