Surviving a Brain Tumor and Coma: Mindy’s Story, Part Two

At age thirty-six, Mindy Whisnant was diagnosed with a large, non-cancerous brain tumor. In June of 2016, after a fourteen-hour craniotomy, Mindy fell into a coma. Her husband Greg, their eleven-year-old daughter Ashley, and other family members stayed by Mindy’s intensive care unit (ICU) bedside waiting, hoping, and praying she would awaken.

__________________________

As the days passed, Greg kept notes in a journal. He recorded who visited the hospital and whom Ashley stayed with back home. Then came time for Greg to tell Ashley that her mommy (and daddy) wouldn’t be coming home anytime soon.

Greg writes of sleeping on lobby couches using Mindy’s spare pillow. Nurses took blankets to him, because they knew he wasn’t going anywhere. Leaving only to eat, shower, or accompany family members to the hotel connected to Barnes, Greg preferred staying as close to Mindy as possible.

As documented in Greg’s journal, Mindy first opened her eyes on July 8th, 2016. On the 11th, a setback resulted in a tracheotomy surgery. The next day she was fitted for a helmet to protect the hole in her skull. Greg writes, “I read lots of facebook posts. Got [Mindy] to smile a little bit.”

Though Mindy was “awake”, today she has no recollection of anything, including her thirty-seventh birthday or being transferred from the ICU to the step down unit. According to Mindy, she woke up ten days later, on July 28th, the day her memories begin.

“I remember hearing Greg arguing on the phone with insurance figuring out where I would go for rehabilitation. I thought, Huh, I must be going somewhere.

“I noticed I was very small. I was caved in. I’d lost twenty pounds. I’d had a trach and I was wearing a helmet. My words were only coming out two or three at a time. There was a point when I wanted to communicate. I wanted to ask what the hell just happened, but I couldn’t. I didn’t know what to ask. People were telling me it’s August, and I didn’t know what happened. They didn’t want to tell me, because they weren’t sure if I was ready.

“There was never a decompression moment when everything came out at once. Little bits were communicated over time. Greg told me about the skullcap surgery, because I awoke wearing a helmet. I had to wear it anytime I was awake.”

Mindy had to relearn speaking and using her body, including the progression of sitting up, standing, and walking.

On August 2nd – one year ago today – she was discharged from Barnes-Jewish Hospital and moved to The Rehabilitation Institute of St. Louis. There she underwent daily physical, occupational, and speech therapy.

“Speech therapy was difficult, because I still had a feeding tube, but physical therapy was the worst. It was exhausting.” Her core strength – once capable of lifting 115 pounds overhead – was gone. Left hunched over, Mindy used pole walkers to learn how to hold herself up again.

“I wanted to cry, but I didn’t want to upset the people there for me.” Family members who had stayed by Mindy’s hospital bedside remained with her during rehab. Each time she accomplished a new milestone – such as making it across the parallel bars, first with assistance, then without – at least one family member sat close by cheering for her.

During a trip home, Greg received an unexpected visitor from the Decatur Memorial Hospital (DMH) Foundation. The Foundation oversees the Assistance Shared in Kindness (ASK) program, and is funded entirely by DMH employees for coworkers in crisis.

Unbeknownst to Team Whisnant, a coworker completed the necessary paperwork outlining Mindy’s eligibility. Due to her extreme circumstances, the ASK program paid for two month’s of their mortgage.

Insistent on staying by Mindy’s side as much as possible, Greg had gone two weeks without a paycheck. The ASK program’s generosity made it possible for Greg to continue staying with Mindy.

On September 13th, the day before their fourteenth wedding anniversary, Mindy was discharged from rehab.

Mindy never used the wheelchair sent home with her, relying instead on a walker. “I wore shoes in the house so I wouldn’t trip.” Even with the helmet, falling was a major concern while her head healed.

“Greg wanted me to tell him when I was getting off the couch so he could help.” One night she just wanted to use the restroom. “Greg saw me in there and called me out. ‘So you think you can just get up on your own now? Mindy, if you fall, I can’t keep doing trips down to St. Louis. We’re a team, we have to be on the same page here.’ He was right.”

Mindy returned to DMH, continuing physical and occupational therapy daily and speech therapy two to three times a week. She had to be driven to every appointment; it would be months before she would receive clearance to drive again.

In addition to Mindy’s care, Greg’s return to work took priority. For that to happen, the moms took daily shifts. “Greg’s mom came from 5:30 a.m. to 10:30 a.m.; my mom from 10:30 a.m. to 2:30 p.m.; Greg from 2:30 on.”

Mindy, with her mother-in-law at the wheel, sometimes got Ashley on the school bus. Neighbors helped by driving Ashley to and from school as well.

One day a scent stirred a sensory memory from Mindy’s hospital stay. “When my mom visited me in the hospital, she brought a face scrub, Kroger brand. I felt ashamed and scared and dirty. But she would take the time to put it on and help me get it off. It felt wonderful to be scrubbed clean and new. I still use that brand, because the smell makes me feel safe, secure, supported.”

Mindy’s days consisted of lying on the couch, going to therapy, and walking the neighborhood with her walker. “Then one day I decided I didn’t need the walker in the kitchen, because it got in the way, so I just did without. It was fine.”

Walking unassisted was a major milestone; showering by herself for the first time was a turning point. “I wasn’t supervised, and I didn’t have my shower chair. But then it went downhill fast. I found a scar that I didn’t used to have that looked like a cesarean [scar].”

A fat layer removed from her pelvis and inserted into the eyebrow area helped with rebuilding. “I got out and asked Greg, ‘Is there anything else I’m going to discover? I don’t like to discover stuff.’ I thought I had my head wrapped around it all, but no.”

When discouraged, Mindy “compares back” as she says. “One day I attempted to vacuum. I did about a three-foot square and had to stop. Then I checked myself and said, ‘But last week all I did was lie on the couch and watch daytime tv.’

“Then one night I made dinner. It took forever and people were starving, but I did it. I could easily spin down the rabbit hole, or I could assess, be thankful for a, b, and c, and take it from there.”

__________________________

Surviving a Brain Tumor and Coma: Mindy’s Story is a three-part series. Part Three will be posted tomorrow, August 3rd. Enter your email address to receive instant notifications, or follow me on Instagram or Facebook for post updates.

Surviving a Brain Tumor and Coma: Mindy’s Story, Part One

Surviving a Brain Tumor and Coma: Mindy’s Story, Part One

THE LIGHT SERIES

When life delivers darkness, we have the ability to bring light, for ourselves and for one another.

__________________________

Meet Mindy Whisnant. Wife to Greg, Mom to Ashley, and Clinical Research Associate at Decatur Memorial Hospital’s (DMH) Cancer Care.

Family Photo

Team Whisnant – May 2017

A former CrossFitter turned strongman competition enthusiast, she’s one of the toughest, yet most tender people in Macon County. But her toughness isn’t derived from lifting weights or woman handling large objects; it’s from an unexpected diagnosis that could’ve claimed her life. Instead, she’s claiming it.

In July of 2015, Mindy noticed partial hearing loss in her right ear. Training at DMH’s Specific Performance Enhancement Center (SPEC) for multiple strongman/powerlifting competitions that summer and fall, Mindy’s concern was inner ear. “The overhead log press made me nervous about my ears and balance. I didn’t want to have a ninety-five pound log over my head and start getting dizzy. That’s what started the whole dang thing.”

At work, Mindy kept receiving calls with no one on the other end, or so she thought. Unintentionally hanging up on callers indicated her hearing had worsened from decreased to nonexistent.

An appointment with her doctor resulted in month-long treatment for fluid on the ear, which elicited no change. She was then referred to an Ear Nose and Throat (ENT) specialist at DMH.

A test at the ENT’s office confirmed no hearing in Mindy’s right ear. While there, an incision made in her eardrum (myringotomy) relieved pressure and restored her hearing immediately. Mindy was satisfied; her physician was not. He suspected he had treated a symptom, not the cause, and ordered an MRI.

In the meantime, Mindy was surprised by the intensity of sounds. “We were at a Mexican restaurant, and I couldn’t believe how loud hearing chips crunching inside my own head was.” Her excitement about renewed hearing dwarfed concerns about the upcoming scan.

The MRI coincided with another powerlifting event. “I thought I’d hop on the scanner and be out within the hour to make the competition.” The process took longer than usual.

The radiology technician repeatedly asked Mindy if she’d been having headaches. “I knew [the tech] well enough to know his poker face was failing bad.”

What’s going on here buddy, she wondered while lying on the table. After the scan, she made the competition in time for the second heat where squats, bench press, and deadlifts temporarily took her mind off the MRI experience.

Tire Deadlift Aug 2015

Mindy completing a tire deadlift at a powerlifting competition – August 2015.

At work the following week, the ENT specialist called Mindy personally. “He said to get Greg and meet him in his office in five minutes.” The quick turnaround time of results and urgency of the unscheduled follow-up appointment increased her concern.

MRI images displayed for the couple revealed a large tumor – 5 cm x 4 cm x 4 cm – growing behind Mindy’s right eye. “It was big as shit,” jokes Mindy. “I’m not a radiologist, but I could see that.”

Results of the scan led physicians to believe that the two most likely scenarios were a meningioma (usually benign) or a sarcoma, an aggressive cancer with short-term life expectancy. Because of the tumor’s presentation, cancer was a realistic possibility.

“That was the scariest moment,” says Mindy upon hearing an aggressive cancer was likely. A biopsy performed that same week, the day before Thanksgiving, would determine the diagnosis.

Thankful to spend the holiday with Greg’s side of the family, Mindy says, “I couldn’t face my parents. I watched them bury my sister not even a year ago. So now I’m going to tell them I have a tumor? I couldn’t watch them cry.” Time off through Thanksgiving weekend gave Mindy the chance to call key people in her life while processing her reality.

Looking closely at her reflection, Mindy could tell a slight change to her right eye, which protruded marginally more than usual. Other than the almost imperceptible appearance change and her initial hearing loss, she displayed no other symptoms of a brain tumor.

The biopsy concluded a grade one meningioma, a benign tumor. Instead of imminent death, she would face major brain surgery. It wouldn’t be an easy journey, but it was a journey and not a dead end.

Transferred to Barnes-Jewish Hospital in St. Louis, Mindy was scheduled for a craniotomy. “They wanted to schedule me for an April surgery, and I said no. I didn’t want to miss the end of Ashley’s fifth grade school year. I apologized for officially becoming ‘that patient’. If we were going to do it, I wanted to do it on my terms and timeline.”

On June 28, 2016, Mindy underwent a fourteen-hour surgery. Part of her skull and right eye socket were removed along with the tumor. A titanium plate was inserted to cover the skull’s bone defect and titanium mesh replaced the eye socket.

Skull Mold

Mold used to create the titanium plate for Mindy’s skull.

Following surgery, Mindy was expected to be in the hospital for five to seven days post-op. Instead, she fell into a coma.

Mindy doesn’t remember her closest family members staying in constant rotation by her  bedside in the intensive care unit. She doesn’t recall her daughter’s readings of incoming mail, including get well cards.

“About five to seven cards came a day. There were times when I was cognizant enough to fill in loops,” explains Mindy. “I would clench my hand, or move my foot or eyes to show that I heard, but I don’t remember any of it.” Despite small signs of progress, hospital staff monitored increased pressure in Mindy’s brain.

Early morning on July 4th, her neurologist had the end of life discussion with Greg. Pressure in Mindy’s brain had become life threatening. Greg was given two options: wait it out, or give consent for a second, immediate surgery to remove the plate that had been inserted not even a week prior. Greg opted for surgery.

Mindy made it through and slept on.

__________________________

Surviving a Brain Tumor and Coma: Mindy’s Story, is a three-part series. Part Two will be posted tomorrow, August 2nd. Enter your email address to receive instant notifications, or follow me on Instagram or Facebook for post updates.

An Airing of Grievances for Goodness’ Sake!

It all started about three hours after my surgery. I ran my tongue along the gums of my bottom jaw and felt the telltale peel-back of skin. For some reason, I’m “difficult to intubate” resulting in getting scraped clear to the bone with the intubation tube somewhere in the process. It’s happened once before, during a finger surgery, nine years ago. I felt the hole in my gum and mentally began preparing for battle.

Week One – no problem. I was down for the count with Mom and Mark on the home front caring for Miller while I cocooned in my sweet bedroom suite.

Week Two – Here comes the mouth pain, which is far worse than my recovering belly. I called the dentist for a sample of Orabase – a paste that dries to the gum creating a type of Band-Aid. It worked last time. Unfortunately, this time the scrape was low enough that my tongue kept dislodging the paste, even after I waited the recommended drying time. Fail. So I try to chew only on the left side of my mouth and stop eating once the pain reaches my temple.

Week Three – Post-op appointment at which my surgeon says the word you never want to hear: “Infection.” Followed by week-long doses of antibiotic. Good news: my mouth stops hurting.

Week Four – I get a weird taste in my mouth that won’t go away – well you did just change toothpaste –  and my throat feels slightly cotton-ball like – you know, one step before scratchy. Corn pollen, Jamie. That’s the corn pollen.

Week Five – I take a selfie with my niece to discover this weird alien appendage, formerly known as a tongue, protruding from my mouth.

Wtf. I get home and use a tongue scraper on it, and then a straw on the way back stuff, and then my toothbrush making me retch like a fur-ball laden cat.

Finally, I cave and mention it to Dr. Mark. “Jamie, that’s Thrush. Side effect from the antibiotic.”

COME ON MAN!!! No wonder my mouth had a funny taste and my throat felt funny.

Thrush Selfie

Thrush tongue tinged green from veggie straws.

This whole debacle reminds me of a pesky sibling who irritates you for the sheer pleasure of getting a reaction. My brother used to stick his finger within inches of my face sending me to shrieking.

“What, I’m not touching you,” he’d say making a poking gesture.

“Jamie, just ignore him for goodness’ sake” mom intoned.

Sometimes siblings can’t be ignored. They keep jabbing at you with a mocking, “I know you are but what am I?” comeback.

The past five weeks have been an annoying sibling. Each new surgical setback is another jab with the finger, another mocking response.

So here’s my retaliation – a good ole fashioned airing of grievances. This isn’t whining, and it isn’t tattling. It’s a simple acknowledgment. Yes I see you, I hear you, and I’m done being affected by you. Are you finished now?

You know what doesn’t help an airing of grievances? Any type of reply, either self-imposed or from others, that begins with “at least”.

At least you had the surgery.

At least you feel better.

At least you didn’t die!

(For the record, no one besides Snarky has actually said these things to me.)

You know what “at leasts” are? Guilt trips disguised as perspective. Negativity guised as a glass-half full reaction. In other words, they’re bullshit.

At least nothing. My mouth hurt, antibiotics made my bowels a mess, everything tasted bad, and then I got Thrush. Fact, fact, fact, fact. No at least. Just fact.

But in the meantime, here’s what else has been going on in my life. I’ve been working nearly every day on the Light Series that launches here tomorrow, and I’m beyond excited about it. It has single-handedly been the biggest, most welcome distraction through all of this. My brother-in-law stayed with us for a few nights this past week (he’s cool), and we spent time with family whom we don’t see often yesterday (they’re fun). I’ve had playdates and lunch dates and Skype dates with girlfriends (girlfriends are lifesavers). I started incorporating bright colors into my wardrobe (and love it). Oh, and my fingernails look amazing. Oh! AND I CAN START WORKING OUT AGAIN NEXT WEEK!!!

That’s the good stuff. That’s where my focus goes. I’m not ignoring the facts; I’m acknowledging them.

Yep, my tongue still feels weird. And yep, it’s really not that interesting at all. But writing this installment?

Now that’s worth my time and attention, for goodness’ sake.

Human Highlights: It’s Miller Time

Human Highlights is a Sunday tradition at Commode To Joy. It’s a friendly reminder to forgive your human moments, celebrate the highlights, and enjoy.

……………………………………………….

Let me be upfront and say if you think this post will be about beer, you’re sorely mistaken. It’s about my son, whose name happens to be Miller. No I didn’t name him after booze, though I do think it’d be hilarious to hear him announced as “Iiiiiiit’s Miller Time!” in a sports auditorium some day. I digress. Back to Human Highlights.

Human Moment: Last night I went to bed wondering about my Human Moment for the week. I can’t think of anything. Not one thing. I didn’t say an obscenity that Miller repeated. I didn’t make a traffic flub. I didn’t even fart out of turn in public. What on earth will I type about? 

3:50 a.m. – that’s what time Miller came by my bedside. “Mommy! You’re home!”

It’s not often that we’re out late enough for a sitter to put Miller to bed. Last night we stayed out later than his bedtime. I got to bed just shortly after my usual. Thank. God. That damned 3:50 wake up time, on the other hand? Now that’s ungodly.

I know it’s old old old old news to hear a parent talk about sleep, or lack thereof, with a little one. Lame, boring, we’ve heard it already, next! I also know that this time is precious and he’ll be grown soon and I won’t always be able to snuggle him in the wee hours of the morning without it being weird and inappropriate.

But listen, on a scale of one to perky, I’m somewhere in the range of curmudgeon.

By 5:15 I gave up on the prospect of sleep, and we got up. Miller was hungry so I microwaved some frozen pancakes (mom of the year, I know I know). I went back to the kitchen to make some scrambled eggs and toast for myself…and then I spotted the frozen pizza.

Miller’s breakfast was ready in 47 seconds plus the time it took to add butter and syrup; mine was ready 22 seconds. I’m totally winning right now. Or, at least, I’m not losing as badly as I was at 3:50.

Now to sit and wait for Mark to wake up so I can go back to bed, because you better believe I’m tapping out just as soon as I can.

……………………………………………….

Highlight: Saturday morning I text one of my closest friends inviting her and her boys to join us at the park. Her oldest son is Miller’s age. Weather was sunny and upper 70’s with a slight breeze (aka idyllic). Conversation was fantastic (duh). And, our boys are good friends (something we can’t force and are thrilled about).

Tire Pile

Tire Trove

……………………………………………….

Enjoyment: Friday morning Miller asked how to write his name, so I talked him through it. To say that I’m proud is an understatement. Even my Sunday morning bleary eyes finds this to be adorable. After almost three hours of being awake, I’m actually grinning.

Name

Three-year-old penmanship.

What are your Human Highlights from the week? Leave one of your moments in the comments below.

Introducing The Light Series

When life delivers dark circumstances, we have the ability to bring light, either for ourselves or for one another.

……………………………………………….

In one week, I’ll be launching The Light Series on CTJ.

It’s a different approach than my usual installments in that the stories won’t be about me, nor will my opinion surface. Instead, I’ll be sharing someone else’s story.

Each will begin with an unfortunate, undesirable, or flat out shitty experience that turns out to be okay – or maybe even more than okay – not despite the experience but because of it.

It’s the essence of Commode To Joy.

My inaugural story is so profound that I’ve separated it into three parts so as not to sacrifice important elements. Starting next Tuesday – August 1 – I’ll launch the series, posting one installment a day for three days.

There will be layers of dark, but rest assured, light will persist.

Always,
Jamie