I’ve always been pleased to think of myself as a lifelong learner. I am proud, usually, of my intellectual curiosity.
I now have absolute proof that I am a nerd. I should really buy myself a Nerdy Nonni Tshirt.
Here’s what I mean.
I woke up from the pounding head pain last night and realized that the word “disgust” comes directly from the Latin root for taste, or “gustare”. Huh, I thought, holding the icepack to my temple. “Gusto. Gust. Disgust. Offtaste. Bad taste. This tastes disgusting.”
Side note: nobody mentioned to me that I might experience a sensation referred to as a loss of taste or a diminishing of the sense of taste. But I do have that. And guess what? Everything tastes disgusting.
When my Dad had heart surgery many years ago, we were all gathered around his bed as he came out of anesthesia. We asked him what he was thinking, clearly expecting some deep words of wisdom from the philosophical man at the center of our world. Dad paused and said, “I was using Pythagorean theorem to calculate the number of ceiling tiles in my room.”
When I woke up from my own surgery (after my round of trying to throat punch all the white coats), I found myself avoiding the pain by recalling all the lyrics to every old Russian folk song that I learned a half-century ago. I was able to recall every word of “Katiusha!”
What an interesting experience I am having! I’m learning many new things, about myself and about the world around me.
One thing I have learned is to use my icepack as soon my head feels like it’s being jumped on by a troop of chimps.
I am about to try something that I have never tried before. I am about to attempt to write a post while floating painfully around my ceiling in a haze of opioid medication.
I apologize in advance. For the typos, misspellings, random words, and trailing thoughts. I apologize for the lines that will seem completely pointless to you but will have me thinking of myself as both witty and articulate.
Why am I doing this?
Well, obviously, because I am feeling the effects of the medication. I do NOT like this feeling. At all. In fact, I have spent the past 4 days drinking as much water as possible to flush my system and have used nothing other than acetaminophen and ice to manage the discomfort. I thought I was a very rugged old soul, strong and able to manage pain. Thought I was being a good patient and all that. Yay, me.
But I was sent home a week ago on a high dose of a steroid called dexamethasone, which was prescribed to control the inevitable swelling that happens after neurosurgeons dig around in a person’s brain matter for half a day. I knew that the medication was helping to keep my symptoms (ie, pain) under control. In fact, last week before my discharge I met with my nice neurosurgeon, whom I shall henceforth refer to as “Doctor Understatement.” I told him just how great I was feeling, and he cautioned me.
“Remember that once you’re off the steroids, you might get a headache.”
I have had headaches my whole life. I brushed him off. I am Nonni. I ain’t afraid of no headache.
Sure, my head, and most of the rest of me, was uncomfortable all week. But it wasn’t interfering with anything. I was fine. All was well until around noon yesterday when the pounding and aching started up in earnest. Ice. Heat. Acetominophen. Repeat. The pain kept slowly creeping up. Stretch, walk, deep breaths, ice, heat, acetaminophen.
It kept on creeping, bit by bit, a little stronger with time.
I tried to sleep last night, but couldn’t find any way to be comfortable. By midnight, I felt terrible.
You see, a regular old headache is that bad pain on the inside of your skull. You feel like your brain is swollen and throbbing. Like a stubbed toe. I had that. I had a LOT of that pain.
A more unusual headache is the pain that you get after the outside of your skull has experienced some kind of trauma or accident. I had that, too. I had a TON of that pain.
And then there is tinnitus, also known as ringing, buzzing, whizzing, fizzing, roaring sounds in a person’s head that aren’t really there. I had a boatload of that shit going on.
I lay there for a while with my stubbed brain throbbing, wondering why my sleeping husband sounded like an entire Roman army marching across the rocks. My stitches itched and pinched. My bonks throbbed. Every eyeblink hurt and every heartbeat sounded like a distant bomb going off.
So I got up and made a bagel. I ate it sitting up in bed, with an ice pack on my neck and a lavendar hot pack on my eyes.
By 1AM, I gave in. I took the stupid little pill. I curled up like a shriveled worm and slowly drifted off into pounding, hissing, dinging achy sleep for about 4 hours.
So what is my point?
(Wait. Give me a minute.)
My point is this: when you have a way out of a tough situation, for goodness sake, take it. I should never have let the pain get that bad. Instead of staying ahead of it, I wanted to be some sort of warrior woman and I put myself through a lot of unpleasantness that I didn’t have to go through.
My point is that even in the most deserving of times, too many of us (me, I mean) continue to judge ourselves and to put pressure on ourselves. Nobody cared if I took my medicine. It was only me and Paul in that bedroom. I don’t know what I was hoping to prove to myself.
So this morning, after I finally pried open my sticky eyes and took a hot shower with peppermint soap to wake me up, I was determined to stay ahead of things. I sat outside, had a good breakfast, walked around the house, stretched. I felt the pain coming back. So of course, I went to my routine: ice, heat, acetaminophen. A couple of hours later, it was rising again like a tide. What a strange sensation. I should have immediately taken that pill, but I hesitated.
I reached out to my support team, Paul, and our kids. I asked for advice. And you know what they said, more or less?
“What the hell are you waiting for? You do not need to spend all day with a stubbed, traumatized, buzzing skull. Take the pill.”
I listened. I took it.
Well. I thought this was going to be funny. Lesson learned. Sometimes the post simply writes itself.
Well, I have to say, I am happy to have that behind me!
Thanks so much to everyone who has been sending good wishes, healing vibes, goodies, cards, jokes, and cheers. I never fully understood before this just how vital it is to live with so much love and support.
Today I just want to say, HI! I’m alive! So far the brains seem relatively unscrambled and I am on the mend. It won’t be a deep or philosophical post because, you know. I just had FREAKIN BRAIN SURGERY.
So let’s hit the funny highlights, shall we?
Key lessons learned from brain surgery.
You have to laugh. You just have to keep that sense of humor. And when you are an old lady with her eyeballs spinning in her cracked head, lying in a hospital bed in a baggy blue johnny, just picturing yourself is enough to make you laugh. When you open those blurry eyes and find your old self surrounded by bright and beautiful young nurses and doctors, you damn well better stay humorous.
When they tell you that you will “sleep” through your surgery, believe them. In my case, I was chatting with the nice anesthesiologist(s) and breathing in the little mask. Just as I started to drift off, it seemed to me that about 50 people started yelling my name and shaking me. My reaction, naturally, was perfectly calm and logical. Luckily for the lovely young folks surrounding me in my moment of vulnerability, I was unable to articulate my thoughts. Because this is what I was thinking, “What the FUCK is wrong with you?!! I’m supposed to be unconscious!!!!” For a few seconds, I thought they were calling the whole thing off and I was plenty mad. I have a vague memory of trying to smack one handsome young man in his handsome young face. In reality, I had been “asleep” for 12 hours while they sawed my skull, poked around my nerves, dug out the tumor, and stitched me back up again.
This is not the best weight loss plan, but it works. When you have your vestibular nerve removed (cut? killed? sliced?), every movement of your eyeballs makes you feel sick. Even the thought of your favorite food makes you erp. Ah, the joys of sucking on a piece of ginger all day…….
When the nice nurses tell you to “rest”, do not react. They mean well. They do. It’s just that they are doing their jobs when they wake you up every 14 minutes around the clock in the ICU. They really do need to check your heart rate/temperature/blood pressure/blood sugar/platelets/blood count. You do need to wake up to take your pain meds, blood pressure meds, steroids, laxatives and pepcid to offset the side effects. You get the idea.
Neurosurgery means that every morning for the first few days, you will open your groggy eyes and find yourself surrounded by approximately 125 eager young faces who want to “check your neuro status”. They will ask you very difficult questions like, “What is your name? Where are we? What is the date?” All of this info will be written on the board across from you, and you will have been staring at it endlessly for hours (as it is the one thing that isn’t jumping around). You will answer. They will shine lights in your eyes, ask you to smile, stick out your tongue, raise your eyebrows, make a pucker. They will tell you you’re doing great. Four minutes later, another group (this time for ENT) will go through the same thing only this time they add a tuning fork. Four minutes after that, one of your surgeons will repeat it. And four minutes after that, your other surgeon will have a turn. You are sure to know you name by the time you leave, I promise.
Being deaf in one ear is not all bad, believe me. When you are in an ICU with all the bings, bells, dings, voices, hisses, clicks and bangs, it is a GREAT gift to be able to sleep on your good ear and make it all go away.
Most of all, what I learned from my coconut cracking experience is that I am one very very very lucky woman. The doctors and nurses at Tufts Medical Center in Boston are absolutely amazing. Especially those nurses, who are absolutely tireless as they calm, medicate, clean, soothe, assess, feed and monitor patients. My admiration for each of them is endless.
Now I need some good podcast and movie recommendations. Reading makes me nauseous. And I am supposed to stay relatively still and not lift anything heavier than 5 pounds for 6 weeks.
Pray for my poor, wonderful, supportive husband who has to deal with me!
Nine more days until the nice neurosurgeon and the lovely ENT drill a hole in my head to carefully, slowly, delicately take out the tumor that is trying to strangle my facial nerves and knock me on my butt.
I’m scared. I do NOT want to be out cold for 8 or 9 hours while people are poking around in my brain. I do NOT want to be stuck in a big, loud, brightly lit, big city hospital for four or five days. I do NOT want to be in pain.
But I am taking the sage advice of my older brother, who is powering through cancer treatment with the attitude that “it is what it is, and all will be well.” I am channeling the courage and strength of my friend Fran, a young mom who is dealing with breast cancer treatments by facing it directly and looking forward to having it behind her.
And I’m leaning on my sister, who is always hilarious. She has the most wonderful gallows humor that lifts her through life’s many struggles.
Therefore, let me tell you a few things about being an overweight, clumsy old woman with an acoustic neuroma. First of all, I have named him “Stanley.” I want to personalize him, and I want to make him something that is separate from me and my own personal body. Stanley seems like a good name for someone annoying, frustrating and slightly toxic. Someone who has been bugging you for years but who won’t go away.
On Aug. 5 we will send Stanley on his merry way and finally be free of him.
I am also choosing to look at the hilarious side of my wonky, wobbly self. Picture this: in the middle of an average day, when I am thinking about dinner and not about Stanley, I calmly reach into my dryer to pull out the clean clothes. WHOMP. I suddenly and unceremoniously tip over and land on my knees in my laundry basket. Oopsie. Nothing hurts, so what can you do except laugh?
I reach down casually to pull some weeds out of my garden. Same deal. WHOMPIE. I end up with a marigold up my nose. Could be worse, to quote my dear departed Momma.
I see myself walking down the hallway in my house, bonk on the right wall, bonk on the left. Sheesh. I am walking like a drunk and it’s 10 AM. Even my dogs look judgemental. What are you gonna do, right? It’s funny!
It’s funny to wake up in the middle of the night and wonder why someone is honking a car horn in this rural spot, and to realize that the sound is inside my head. It’s even funnier when everyone reacts to a sound and I say, “Oh, you mean that isn’t my brain?”
This will also be quite a learning experience, right? I studied a bit of brain anatomy and neurology many years ago when I was a grad student in speech/language pathology. It was cool to go over my MRI with the doctors. I look forward to seeing scans after Stanley moves out.
I’m also making plans for after the surgery. I am determined to get back to my old self as soon as possible. They say that recovery from this can take months, but I am looking to speed it up. In my effort to do that, I am doing a LOT of vestibular stimulation through my physical therapist. This means that at various times (like waiting in line for an amusement park ride with my grandkids) I stare at one spot in front of me and slowly swing my head from left to right and up and down. I look like an escapee from a local asylum.
It gives me lots of space in crowds, but it’s a little embarrassing. At least for my family. I don’t personally care how I look. I gotta get Stanley out and get back to life!
I am spending these next few days trying to relax. I am distracting myself with the sweet antics of bunnies and chipmunks in the yard. I am spending time with the people I love most dearly. Next week we’re having a “Bye, Stanley” party to celebrate and send him off. I hope to get to the ocean, my most healing and soothing place.
If you have any funny stories to share, please do! Stories about your own wobbles and wonkiness or about a friend’s experiences. Anything.
I have to laugh for nine more days.
After that I plan to moan, groan and demand that everybody baby me for a couple of weeks.
Waiting is such a difficult thing. I have been waiting for weeks to have surgery that will hopefully relieve some of the symptoms I am having from an acoustic neuroma. I don’t know how hard the surgery will be (How long will I be unconscious? How difficult will the microsurgery be? What complications might appear?) I don’t know what I will be feelings after it’s over. (How nauseous will I be? How manageable will the pain be? How long will it take before I can come home? Will I be safe to walk on my own?)
I was lucky; my surgery was scheduled only four weeks after I met my neurosurgeon.
Only four long, scary, challenging weeks. I am trying as hard as I can to stay busy. I am playing my violin, I am reading. I still play with and watch the grandkids. I am visiting local farmers markets and keeping up with news.
None of that matters.
I wake up scared and I spend all day trying to distract myself.
But I feel stuck. I feel helpless and immobilized.
I am like a tiny bug, trapped within a drop of amber, frozen in time and place.
I am a very very patient Nonni and was a very patient teacher.
I am NOT a patient patient. Let’s get it done. I want that tumor out of there. I want it out NOW. I want it gone so I can begin the next phase of life, whatever it looks like. I am ready to be partially deaf. I am ready to be off balance and to have a slightly droopy smile, all of which is likely.
I just can’t stand the waiting. Sitting still in my bubble of amber, unable to move forward, unable to help myself.
In an effort to comfort myself as I impatiently await surgery to take the acoustic neuroma out of my brain, I am attempting find humor in the situation.
“Oh, hahahaha! Funny, funny me! I was awake all night because of the incessant car horn that beeped every 15 seconds in my brain.” Nope.
“So let me tell you about how funny it is to carry a load of clothes downstairs without looking either up or down because you’ll fall if you do.” Old lady, falling downstairs. Nah, not that one, either.
H’m. How about a funny story of drinking a martini when you can’t feel a quarter of your tongue?
I like a martini now and again. Either a lemontini with fresh lemon or a good dirty martini with cheese-stuffed olives. Yum. I don’t indulge all that often, but given my new personal motto (“Leave me alone! I got a freakin’ brain tumor!”) I decided to have one the other night.
It was right after I made the epic mistake of googling “Recovering from acoustic neuroma”. I may have been the tiniest bit shaken by what I read. I may have been pacing around the living room looking for a distraction.
Or I may be a budding alcoholic looking for an excuse.
At any rate, I realized that, in the wise words of my dear departed father, “It’s five o’clock somewhere.” So I got out my shaker, the lemoncello, a lemon and a glass. Then I opened the freezer and pulled out the bottle of vodka that I always keep on ice. Old Russian trick, learned in my time in the Russian Department in college. Always keep your vodka icy.
I mixed up a super cold, super delicious, sweetly tart lemon martini and sat down on the deck to have a sip.
Now, I have to digress for a moment. Even though I am a mostly well-behaved old grandma, I have been known to overindulge in my wild youth. I mean, I WAS a Russian major, and we DID have a small freezer in our department office. A couple of shots between a literature class and a conversation class could make all the difference in fluency.
And after college, I worked for a couple of years as a Russian interpreter in Boston. Once an immigrant family had settled into their new home, they would have a little dinner party to thank the American social worker who had helped. I served as an interpreter at dozens of these dinners (lucky, lucky me….Oh, man, the borscht, the blini, the pelmenyi).
The conversation would go like this:
Russian raises a glass with a shot of vodka: “Many thanks to our wonderful American hosts! We can never repay you!” I interpret into English. We drink.
American social worker raises another shot: “Welcome to our country! We are lucky to have you!” I put this into Russian. We drink.
This could go on for 15 rounds before dinner is served. I am not sure of how accurate some of the later interpretations were, but nobody cared because nobody was clear enough to notice if it didn’t make sense.
At any rate, I learned rather quickly to slow down, to drink water, to keep talking and stop drinking when I noticed a few things. The first sign of complete inebriation was the tip of my nose feeling tingly and numb. The next warning sign was when my tongue tip turned numb. It would sort of feel like a big dose of Novacaine was wearing off. Itchy, numb, tingly.
I haven’t had this happen in years, I swear. I am old now. I am a good girl.
But the other day, as I took my first sip of ice-cold therapy, I realized that both the right side of my nose and the right side of my tongue tip are already numb, itchy and tingly. So is my cheeck. And the right side of both lips. And part of my right eyelid.
In fact, I feel like I have simultaneously been socked in the cheekbone and put on Novacaine. Alll day and all night. And it will be like that for at least another month, as I wait for my surgery date.
It was a rude awakening, for sure. It was so upsetting that I almost didn’t want the martini. But I don’t like to waste. So I drank it.
The second was better. By the third, both sides of my face were numb and I felt so much better!
This may seem counterintuitive, but it is a message I’d really like to send to every doctor/surgeon/med student in the world.
You guys have read this already, but I have developed a benign tumor on my right acoustic nerve. It is called an “Acoustic neuroma” or a “Schwannoma”. Either way doesn’t that sound wicked scary?????
Well, it did to me. I have lost some hearing in one ear. I am off balance and walking like a drunken sailor even when I am neither. My lower lip is numb on the right side and my tongue tip is itchy and numb. I have a TUMOR on my freakin’ BRAIN.
I have not been the epitome of grace and acceptance. No. I have been the epitome of “ARE YOU KIDDING ME?”
Now, I will be honest. It isn’t that I am thinking “why me?” Not at all. I am the luckiest human being that I have ever even heard of. Literally everything has gone my way. For my entire life. I have no right and no reason to ask “Why me?”
But I have been asking, “What horrible tortures are going to happen to me?” I have done the unthinkable and checked Google for “Acoustic Neuromas”. I even joined a FB group of “Acoustic Neuroma Survivors”.
Bad ideas. Bad, bad ideas. All full of “I am worse now than I was before surgery!” and “My surgery lasted 15 hours and I was in the hospital for 2 weeks!”
I got scared.
I got really scared. I am not a sick person. I do not do the hospital/surgery/recovery thing.
I’m NONNI, dammit! I play with kids! I cook! I do finger painting and cookie baking and block building and bike riding! I am NONNI!
We drove into Boston this morning to meet the neurosurgeon who works with my chosen ENT surgeon. We parked in the garage. We noted where our car was parked (3D!). We followed the sign that said “EXIT”. We came to a wall. We went back up. We followed another sign that said “EXIT”. We came to a door marked “Emergency Exit ONLY!” We looked at each other. We went back up the stairs. We searched. We looked around.
At last, at last, we found our way out of the parking garage and onto a HUGE city street. Filled with cars and trucks and people and noise and stuff.
It took us almost a half hour to meander our way to the correct corridor in the correct building of the correct Boston hospital. We checked in and filled out papers and tried to relax.
And this is where my advice to doctors comes in.
After short wait, we were taken in to meet with my neurosurgeon. That man who would, theoretically, be drilling into my skull in the next few weeks.
He was kind, friendly, accessible, and open. All good. He ran through my various options, from “Let’s just wait and see” to a non-invasive gamma knife treatment, to the plain old “slice up your skull and dig out the tumor” scalpel surgery.
I already knew that I preferred the surgery, and when our conversation was finished, it was very clear that he agreed. As my ENT surgeon had agreed earlier.
I left the office feeling much calmer and more reassured than I’d been in many weeks. And you want to know why?
It wasn’t because he agreed on surgery. It wasn’t because he was very thorough, and spent as much time as I needed to review my MRI and CT scans. It wasn’t even because he’s the chief of Head and Neck Surgery at one of the best hospitals in the country.
It was because he was remarkably unimpressed with my situation. It was almost a big yawn for him. It was unremarkable and unimpressive and I am certain that tonight when his wife asks about his day, I will not come to mind for a second.
So that is my advice to young medical professionals today. Be unimpressed. Be ever so slightly bored with your patient’s scary crisis.
For me, at least, this was the most reassuring message I could have possibly received.
Nothing like upcoming brain surgery to keep a person humble.
My, what an interesting place to find myself on this journey of life.
I think I have mentioned that I have a benign tumor on my right acoustic nerve. It’s called an acoustic neuroma. It’s pretty rare, as it happens in about 1 in 100,000 people in the US annually. Lucky me!
Because I am always worried about how my reactions will impact other people, I have been working very hard to stay calm since my diagnosis in April. It wasn’t hard, actually, because I don’t have a lot of symptoms, and it was easy to pretend it wasn’t there. Sure, I have lost about half of the hearing in my right ear, but that can be alleviated by sitting to the left of my friends. I am off-balance, but as a clumsy, chubby old lady, that hasn’t been so hard to deal with, either.
I have made my doctor’s appointments, gone to my CT and MRI scans, talked with audiologists, ENT specialists and PTs. Calm, on top of things, that’s been me.
“Oh, don’t worry,” I’ve said to my kids. “It isn’t cancer.”
I am now two days away from meeting “my” neurosurgeon. And at odd moments in the day, I think, “Wait, I have a NEUROSURGEON??????” I have researched the upcoming procedure and have talked to my ENT. And I know that I have to go into a Boston hospital (only 1 1/2 hours away, but it feels like a foreign land). I will undergo roughly 8 hours of “microsurgery” through the bone behind my ear. When I wake up in the ICU, I will be dizzy, nauseous and in pain.
I’ll have to stay in there, far from home, for about 4-5 days. I may not be able to walk without assistance for a few weeks. I may not be able to drive for months. I will lose all of the hearing my right ear,, becoming totally deaf on that side.
I have been a singer with various local choirs for years. I love to sing. I am learning to play the violin and have made a lot of progress. I am a speech pathologist; I live by the auditory world. All of that feels threatened now.
None of this is life-threatening. I should be much calmer. I know two young, brave moms who are facing life-threatening cancer. I have a brother undergoing cancer treatments and a nephew undergoing years of treatment for leukemia.
But I am realizing something this week:
I do not know how to be that brave.
I’m afraid of being unconscious for a whole day. I’m afraid of being out of control. I’m afraid of the pain and the weakness. I am terribly afraid of who is going to come home from the hospital.
None of this feels like “me”.
I want to get up in some strange public place and shout out, “Wait!!!!! I can’t have brain surgery! I’m Nonni!”
Mostly, I am so terribly afraid that I won’t be strong or stable enough to take care of my sweet baby Max. I am so terribly afraid that after I have this surgery, I won’t be me. I won’t be myself.
All of this has me thinking about life. And about death. About what is really important.
I feel so mortal.
I am sad, too, that I’m going through my first medical crisis without my Mommy. Sure, I’m 66! I’m gray-haired. I’m a grandma! But as I try to be brave about the scariest thing I’ve ever faced, I I still wish that had my Mom to tell me it will all be OK.
If any of you have been through acoustic neuroma surgery, can you let me know how it went???