Tag: brain

This is what support looks like

CraniotomyMeg

Within a 6 month period (June – December, 2018), I had 37 office visits, over 30 recorded focal seizures, 15 MRI’s, 7 CT scans, 4 hospitalizations, 2 craniotomies, 1 infection, and 1 incurable diagnosis, Neurofibromatosis, type 2 (NF2).  I had 17 Meningiomas (brain tumors),  6 ependymomas (spinal cord tumors), and 1 Acoustic Schwannoma (brain tumor in my ear). And a partridge in a pear tree.

I learned so many things during that period of time. One of them is support comes in many forms. I also learned that it changes over time. No matter what form it takes though, a support system is meant to hold you up when things feel like they are crashing down.

Overwhelming Support

Initially, our extended network of friends and family were as shocked as we were by my diagnosis. We were flooded with cards, flowers, well wishes, handmade children’s art, visitors, and more thoughtful gifts than I could count.

Support

During this time, my husband, Josh, and I leaned on everyone. We were all hurting, together. I say “we” because it is not just the person in the hospital bed who needs support. I was fully aware that my diagnosis affected everyone I loved. At that time, they needed my support as much I needed theirs.

Private Support

After a few months, the ‘hype’ of my sudden diagnosis and back-to-back surgeries began to wear off; our meal train ended, and our wide circle of friends and family weren’t checking on us quite as often. During this time, Josh and I learned to lean heavily on each other for support. 

He needed me to be okay just as much as I needed him to push through all the medicine my body required to beat the infection. The infusion process took about 30 minutes, and it quickly became our daily reminder that we were fighting this battle together. 

Picc Infusions

In addition to taking care of me, and my PICC line, Josh also took on all of the parental responsibilities and housework we had previously shared. He bathed our crazy babies, made them dinner, picked them up from school, and put them to bed. He did all of our laundry, grocery shopping, fed the dog, and took me to appointments. It was like he was a single dad who had 3 kids (me being one of them). 

When Josh had to go back to work, things changed again. I was still vulnerable and unable to take on my share of our daily responsibilities, and he could no longer do it all.

Balanced Support

That was when we realized we couldn’t do this by ourselves; we needed help.

During this time, Josh and I learned to lean on those who love us most.

Grandparents to the rescue! My mom-in-law stepped in immediately to help with our boys, take me to appointments, and make meals. She was available at the crack of dawn, and as long as I needed her until Josh got home from work at night. She offered irreplaceable love, and both physical and emotional support.

Nannie

My dad and step-mom also recognized our unspoken need for help, and flew in from Kentucky to offer reinforcement, at just the right time! They stayed with us for nearly 2 weeks, and did everything that I couldn’t at that time, allowing our boys to maintain normalcy in their own home. 

I remember waking up late one morning. I grabbed for the baby monitor and realized it had been silenced. I listened, and heard the most amazing sound in my house: normalcy! My dad and step-mom were playing with our children, and feeding them breakfast. Coffee was brewing; the smell reminded me of when I was a child. Those moments were the most healing. We were not alone.  

I’ve always said that having an amazing support system was critical to my recovery. Now, you know why.

We got through it. Together.

This is my story, and it is not over yet.

I want to take a moment to extend a heartfelt THANK YOU to every person who had said a prayer, sent flowers, made gifts, visited, brought meals, or wished us well throughout this process. We are so blessed to have the support system we do, and forever grateful.

Appearances

CraniotomyMeg

Physical appearance is exactly that; an appearance. And, appearances can be deceiving, especially when there is so much that lies beneath the surface.

Many conditions are completely invisible to those not experiencing them first-hand. Neurofibromatosis II is often one of them.

After having my second craniotomy, I didn’t want to be labelled or defined by a diagnosis, or as a ‘sick” person, so I put a lot of effort into my appearance; making myself look “fine” on the outside.

I covered my PICC line with a long sleeved shirt, used makeup to hide the dark circles under my eyes, and cut my long blonde hair short to help blend in the multiple bald spots that had been shaved away during surgeries. I even learned to style it just right so that the majority of my stitches were covered.

In hindsight, my efforts were a bit vain. But, my appearance was one thing I felt as though I still had control over, when so many aspects of my life and health were spiraling out of control.

The truth is, you can’t see brain and spinal tumors on the outside. You can’t see exhaustion, brain inflammation, dizziness, or tinnitus. You can’t see remnants of seizures; numbness and tingling. You can’t see pain.

Part of me was grateful that strangers, co-workers, and even my own children couldn’t see all of the symptoms that were laying right below the surface. “You look great!” they would say. And I let them believe that I was great.

Another part of me wanted to wear a t-shirt that said something like “fresh out of brain surgery” so everyone would understand.

I remember walking into a neurology appointment one afternoon, just two weeks after surgery, with high hopes of having my stitches removed that day. It was one of those days; I’d had a migraine, and a hard time getting out of bed. The hour long drive to the medical office has zapped all energy I had left, and my body was physically shaking as I walked from my mom-in-law’s car to the building (she was kind enough to chauffeur me when I couldn’t drive). I actually wondered if I might pass out before I got to the door. A man was walking in ahead of us, but my legs weren’t moving fast enough. He glanced back, saw that I looked “fine,” and let that heavy door shut right in my face.

It was the first time that I wanted to scream “I just had brain surgery!!” How could he not see the pain I was in, and how much I was struggling?

What I didn’t realize at the time, was that there would be many more moments when I wanted to scream and shout until everyone ‘got’ it.

There would be moments at work when I would cry in the bathroom because a sudden migraine had hit, and I couldn’t open my eyes against the light over my desk; there would be moments when I had to hide from my children because their normal sounds would make my head pound.

I was not fine.

My brain had just been tampered with – twice in 3 months. A portion of my skull had been removed, and was now being held in place by 5 titanium ‘snowflakes.’ My scalp was held together by thread. Just to get out of bed each morning, I required a handful of medications and an IV infusion to keep the infection from coming back.

I took roughly 25 pills per day, had a home health nurse who cared for me, and relied on my husband to push antibiotics through my PICC line multiple times per day.

One day, I would be “fine” again, but for now, I was broken. And that was okay.

OK

True healing takes time. Although I’ve never exactly been patient, I knew I owed it to myself to take the time I needed.  Eventually, I knew healing would come, and when it did, I would hold the door open for every person behind me, even if they appeared to be “fine.”

This is my story, and it is not over yet.

Craniotomy Me… Again

CraniotomyMeg

When I woke up from my first craniotomy, I felt so alive! I had a waiting room full of people who loved me, and a full understanding of everything that was happening.

When I woke up from my second surgery, it was completely different.

In the recovery room, I remember opening my eyes just one time. I saw the face of a nurse for a fraction of a second, and then the pain became intolerable. So I quickly shut my eyes again, and willed sleep to come. Thankfully, it did.

When consciousness came back to me, I was already in the ICU; I recognized the paint on the wall from my previous craniotomy. Oh no, I thought, something must have gone wrong. I’d gone in that morning for surgery expecting a quick, 15 minute procedure to clean up a possible skin infection. It was supposed to be an outpatient procedure, meaning I would go home that same day.

I reached up, and felt the horribly familiar bandages wrapped around my head. I also had several wrist bands layered on my arm.

“What happened?” I asked my husband, Josh. “You’re okay,” he said. But, I could tell from the crease between his eyebrows and that backwards hat that he was worried.

waking up

Over time, throughout waking moments, Josh patiently explained that my neurosurgeon had found a bacterial infection, and it was much deeper than anyone could have guessed. A full craniotomy had been performed. It had taken about 3 and a half hours (nearly as long as my first surgery to remove two meningiomas).

How had this happened? Did I do something wrong?  I remembered how carefully I’d washed my hair after my first craniotomy; with the hospital shampoo exactly as directed. I had adhered to the weight restriction, and took every pill as prescribed. I even changed my pillowcase every day for a month. Yet, somehow, an ugly little germ had beaten my efforts, crept under my skin, and left my body in jeopardy.

If you’ve ever had surgery, you know that “INFECTION” is a bad word. If you’ve ever had brain surgery, you know it’s the mother of all bad words. If the infection reaches your brain, there is very little chance of survival. Thank God, we had caught mine just before it reached that point.

If we had waited any longer to explore the area, I might not be alive today. And, I remembered that many times over those next few days when I was inclined to think “why me,” or “this sucks,” and “it hurts.” Every time I threw up jello; every time a new bag of antibiotics was hung; every time I grit my teeth from pain; every time I tried to stand on legs that I couldn’t feel, I was still so grateful to be alive.

After 3 long days, the bandages came off. My medical team agreed that the incision looked “good” and Josh took a photo to show me where a section of my scalp had been removed to keep the infection from coming back. 

I’m including the photo below, so if you’re squeamish, I suggest scrolling quickly past it.

my head

The test results had come back, and the bacterial infection was confirmed. I required a heavy dose of antibiotics that would need to be given intravenously, which meant that I had two options. I could stay in the hospital for six weeks, or I could get a PICC line.

The thought of having a central line inserted into my arm that dropped medicine directly into my heart was terrifying. But, the thought staying in the hospital for six more weeks was worse. We hadn’t seen our kids since the morning before surgery, and we were ready to get home to them.

A specialized team came into my hospital room, turned it into a sterile surgical environment, and inserted the small purple line that would allow me to go home!

Having had 2 craniotomies in 3 months, we’d become friends with many of the nurses on the floor. They had helped me at my weakest moments, when I couldn’t even put those ugly yellow hospital socks on my own feet, or walk 3 steps to the bathroom. And, they were happy to celebrate with us as we got ready to be released. By “we,” I mean, I stood for one photo while Josh did everything else; packed our bags, took everything to the car, and discussed next steps with my medical team.

home again

When we walked in the door to our house, we discovered that our kitchen had been transformed! A birthday banner was hung, balloons tied to the chair. Beautiful yellow sunflowers, a pumpkin cake (my favorite), and even gifts decorated the counter.

Have I told you yet how awesome my mom-in-law is?

I had spent my 32nd birthday in a hospital bed, recovering from a brain surgery I didn’t expect to have. While that isn’t how I prefer to spend my birthdays, I know that medical intervention is what allows me to continue to have birthdays.

I used to dread turning another year older, but now, I’ll never take for granted being able to blow out the candles again.

This is my story, and I’m just amazed that it is not over yet. 

Surviving

CraniotomyMeg

Surviving is more than your heart beating in your chest, the breath in your lungs and a functioning brain. It means choosing to see beauty through ugliness, and finding hope on the bad days. It also means allowing yourself to acknowledge that not every moment can be perfect; the bad days are inevitable.

Brain surgery is hard. It’s tough on the person having their skull removed, and for the person in the waiting room. My husband, Josh, and I have learned to lean on each other; when I am weak, he is strong for us both; and when he struggles, I hold us up.

A few weeks after surgery, Josh told me, “everything they do to you, I’m doing to me.” That day, he had a replica of my incision tattooed on his own head.

When he was done, he came home and proudly showed me his tattoo, still covered in plastic and red from irritation. He said, “Now I have an idea of what you feel like all the time.”

What an honor it is to be loved by someone like that. His compassion filled me with purpose during some of the toughest days of my life.

Most people don’t know it takes several weeks for anesthesia to really wear off after a major surgery like that. Once the anesthesia fully left my system, my body realized something was seriously wrong. My lymph nodes were swollen, I ran low grade fevers all the time, and pain radiated from my incision. I couldn’t even turn my head from side to side because the pain would shoot up toward my incision, and crawl down my neck. There were many days that I couldn’t even get out of bed.

I was re-hospitalized three weeks after surgery, and misdiagnosed with Shingles. There was no other explanation as the CAT scan showed no sign of infection, and I didn’t have any traditional signs of infection (redness, or high fever).

image-9

I had never had brain surgery before, and after the doctor sent me home, I thought maybe that kind of pain was normal after a craniotomy. Maybe I just needed to be patient and get used to it. So I tried.

I tried for eighty two days after surgery to ‘get used to it.’ I went back to work, began cooking for my family again, went to a wedding, took our boys to the Punkin Chunkin festival, watched them ride bikes down our street, and even drank a glass of wine with a couple good friends (doctor approved).

image-10

No matter how much pretending I did, or how seemingly ‘normal’ I appeared to look, I knew that something just wasn’t right. I’ve always believed in trusting your instincts, and I finally decided to trust mine; I saw my neurosurgeon after discovering a swollen welt near my incision.

I’m including a photo because if you’re a fellow NF2’er, or have ever had brain surgery, I want you to get to your surgeon if you ever experience this;

image-11

During that visit, my surgeon asked if I was comfortable undergoing another surgery to “explore the area.”

My first reaction was, “hell no.” Were there any other options? I was terrified of going into the Operating Room again, knowing what could happen, and how tough recovery is.

But, then I remembered a promise that I had made while I praying profusely for my children not to have NF2; I had said over and over and over that I would graciously have a thousand tumors and surgeries if it meant my kids didn’t have to have one. Although I know we don’t make deals with God, I felt compelled to stay true to my word, and my second surgery was scheduled.

Later, we would learn that hesitation or delay could have cost me my life.

This time, with surgery just one day away, I didn’t have time to go on a nice weekend getaway with Josh, or take our boys to do fun things before surgery. I had just enough time to call my family, pack a bag for the hospital, and make arrangements for our kids (I seriously have the best mom-in-law ever).

The morning of surgery, just 2 days before my 32nd birthday, Josh and I took our boys to school and did our best to pretend it was just like any other day. My surgeon had told us that he wasn’t 100% sure what to expect on the day of surgery; we had been told to prepare for a 15 minute outpatient procedure, but knew it could be longer depending on how things went. We decided to think positively, and didn’t want to scare our kids, so we told them that I just had a doctor appointment. I squeezed them tight, kissed their faces, and then Josh and I headed straight to the hospital.

image-12.jpg

This time, when my IVs were inserted, and my surgeon came in to sign his initials on the right side of my forehead, it felt a bit like deja vu. He discussed the risks with us again, introduced us to an anesthesiologist again, I signed the paper on the clipboard again, and then it was time to go. Josh and I prayed with our good friend, and then we kissed goodbye.

This time, when the mask was put over my face, I welcomed sleep, thinking I would wake again in a mere 15 minutes. I was wrong.

Sometimes, surviving is hard, but it is always worth it.

This is my story, and it is not over yet.

I am alive.

CraniotomyMeg

Is the baby crying? I opened my eyes. Why is it so bright? I closed my eyes. Shuffling noises. Pain. No, that is not a noise that either of our children make. Where am I? I opened my eyes again. White hospital blanket. I blinked. IV in my arm. Nurses.

I AM ALIVE!!!! 

I have never been so happy to wake up in my entire life. It was the most immense feeling of gratitude. I wondered how many days had previously passed where I had opened my eyes without gratitude? From now on, I knew, I would feel grateful for every single day that I was blessed enough to simply open my eyes.

“I need to see my husband,” I told the nurses over and over. “His name is Josh; please go find him.” I couldn’t wait to see his face and show him I was still alive!

After what seemed like an eternity, someone finally escorted that handsome man to my bedside. One of my nurses actually had to keep me in the bed; I couldn’t get into his arms fast enough. That embrace was everything. It said I’m still here, I love you, I’m alive, and everything really is going to be okay. The only words that came out of my mouth, though, were “God is not done with me yet.”

Thumbs Up

There were so many small victories worth celebrating. Surgery had been successful; it had only taken 4 hours, rather than the anticipated 6. 100% of one meningioma was removed, and 85% of another. Initial CAT scan and MRI showed minor inflammation and no signs of brain bleeding.

I did not have my blood supply severed. I did not have a stroke or seizure in the Operating Room, I did not have any known deficits. It was the best case scenario.

For the first night, I was kept in the Intensive Care Unit (ICU) as my husband (aka Gatekeeper) kept a close eye. We have a huge family and a wide circle of friends, so naturally the room was flooded by visitors. My dad and stepmom even flew in from Kentucky to be with us on surgery day, and help with our boys.

When I remember those first few days after waking up, I don’t remember pain, numbness in my left side, or fear of what might come next. I only remember the LOVE; holding my dads hand like I was a child again; a dozen beautiful white roses; sleeping with Buddy, the bear my boys had made to keep me company; my cousin sneaking a beer into the room for Josh; a friend putting a blue hospital glove on his hand to make me smile; sweet handmade cards from our kids and friends; and my father-in-law revealing he had shaved my name in the side of his head – yes, seriously!! M-E-G (photo below, for proof).

meg.jpg

Each act of kindness amounted to something so much bigger; the incredible support system we have standing behind us.

On Day 2, I was released from the ICU to intermediate care. I was able to hold my head up a bit more, and even took a short walk down the hallway, with some assistance. After a nap, Josh and I agreed that our babies could visit. But, I didn’t want them to see me as a sick mom in a hospital bed. So, Josh helped me change out of my hospital gown and into my normal mom-gear (yoga pants and a T-shirt), my nurses agreed to let me ditch the pulse oximeter (for just an hour), and a cousin brought in those sweet rays of sunshine!

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After about 10 seconds… it was clear that my act was not fooling either of them. Our oldest hated the IV in my arm, and our youngest kept giving my “hat” funny looks. Eventually, they both let me hug and snuggle them, as long as the IV didn’t come too close.

Ryker

On Day 3, a team of neurosurgeons woke me up and were ready to remove my “hat.” Since surgery, I had been wondering how much hair was left on my head. Josh had even shaved his head to show support. When the time came, it was like ripping off a band-aid; quick, and so painful I saw stars. My hands instinctually went up. I still had hair, but it felt foreign; it was twisted, tangled, and matted with blood.

The doctor said the incision looked “great,” but I can assure you there is nothing pretty about wearing a headband of stitches (I’ll save you from the gory images here).

It took a dedicated nurse, 2 bottles of awful sterile hospital shampoo, and 4 towels to get my hair semi-clean. Upon starting, the most patient nurse in the world asked if my hair was red. I told her “no, it’s blonde.” Her eyes widened, and she got to work trying to find my hair amid the mess on my head. I watched the water run red for over an hour. My hair was coming out in handfuls. At one point, a few metal staples even fell onto the tile, and washed down the drain. That poor nurse scrubbed for as long as I could tolerate it. When I could no longer hold my head up, I changed into dry clothes, and slept off the pain.

I must have slept for hours; but it’s easy to lose track of time in the hospital. I woke up when that very same nurse came in to announce we were being discharged!

Home!

This is my story, and I’m so grateful that it is not over yet.

What, like it’s brain surgery?

CraniotomyMeg

As humans, we have a natural tendency to try to fix things that are broken. The problem with an incurable illness is that it cannot be fixed. There is no cure. Yet, we try anyway.

Two days prior to my scheduled craniotomy, my surgeon called. If you have a neurosurgeon, you know that getting a direct call from him or her is rarely to discuss the weather. This was no exception.

My latest MRI scan showed that the largest of my tumors (about the size of a large strawberry) had grown into the main vein that supplies blood flow to my body. He sensitively expressed concerns for cutting off blood supply to my brain (which would kill me), or causing a stroke and deficits. He still felt strongly that surgery was my best chance of survival as the tumor would continue to grow and eventually cut off blood supply on its own anyway. We had to do something.

I hope you’ve never had to hang up from a call like that.

All I could think was, “I want to live!”

I had worked hard and achieved so much out of life, but I hadn’t gotten to LIVE it all yet. It felt like we were just getting started. I still wanted to travel with my husband, finish our basement, and develop my career. I wanted to see my children grow up; the baby was born just last year! What sports would they play? What books would they read? Who would they decide to become?

I’ve always been a firm believer in talking to my children and telling them the truth. They’re young, and incapable of fully understanding such a BIG situation. But, when we talked to them, they understood “it hurts,” “I’m scared,” “I need the doctors help,” and “I’m doing this because I love you so much that I have to try.”

I made it my mission to do everything I could to make them feel loved before surgery. Our favorite was going to Build-A-Bear so we could make “friends” to keep each other company while I was hospitalized again. I recorded my voice telling each of them how much I loved them so that they could hit the button whenever they missed me. Subconsciously, I also knew that if i didn’t wake up from surgery, I was leaving them with a beautiful memory, and a recording of my voice to remind them every day how big my love was.

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They made me a bear too, Buddy. He was a black and white Star Wars bear with yellow power ranger pajamas and a light saber. He was perfect. When we got home, I put him straight into my hospital bag. He was going to surgery with me.

Our 4 year old wanted to make beaded necklaces that said “forever,” so we knew “we are always together even when we are apart,” (yeah, he’s insightful). So we did. And, that night, I rocked my 1 year old, my last baby, in the silence of his room. When that wasn’t enough, I climbed over the railing and laid in his tiny little crib with him until he fell asleep.

Long after everyone else in the house was asleep (we had a full house!), I stayed up to finish writing a letter for my husband to read while I was in surgery. It included some helpful hints, like our Amazon password, what size clothes our kids were currently wearing, and a reminder to not ever feed our boys McDonalds, no matter how bad it gets! I also told him how much I love him, how he changed my life, and how hard I would fight to be there for him at the end of the day. Then it was time to try to sleep (yeah, right).

When my alarm went off at 4am, my eyes were already open. I didn’t bother with makeup, afterall, I was having a major craniotomy. But, I did take extra time to style my long blonde hair, knowing it would be the last time.

Then, I took off my jewelry; my wedding rings and a necklace that said “Be Brave.” I hadn’t taken either piece off since I left the hospital after being diagnosed. I took a deep breath. I felt totally exposed.

Brave

Upon arriving at the hospital, our medical team started fussing over me right away; there were papers to sign, IVs to put in, one last MRI to double check blood flow, and markers to be placed for navigation.

In order to properly place the markers, 8 patches of hair were shaved away by my nurses. I grit my teeth together as the buzzer shaved away, and closed my eyes so I didn’t have to see my long blonde hair hit the hospital bed or thrown in the trash. When the last marker was placed, I ran my hands through my hair, and huge clumps fell into my fingers. Without a word, my husband held out his hand to take the strands. And then he held me so I could cry.

In hindsight, it was such a trivial thing in the big scheme of things… to cry over a few spots of shaved hair. I know that hair grows back. But, it was the moment that everything hit me. This was happening. I was having brain surgery. And, I might not wake up from it.

My neurosurgeon came in, scribbled his initials on the right side of my forehead in blue marker, shook my husbands hand, and then it was time to go.

In the operating room, one of my anesthesiologists introduced herself, helped me settle on the table, and then placed the mask over my nose and mouth. She told me to take a few big breaths.

As I did, the room started to fade away. My last thought was “I want to live. Please God, let me live.”

And then I was out, and it was all between God and my neurosurgeon.

This is my story, and it is not over yet.

23 Days

CraniotomyMeg

I was fresh out of the hospital, newly diagnosed with NF2 and an emotional trainwreck. One minute I was elated to sleep in my own bed and not be poked for blood at 4am, the next I was frustrated from being in pain, and afraid of having more seizures.

Walking through the garage door into our kitchen was tough. The last time I had been in that kitchen, I had fallen onto that turquoise rug by the sink from my first seizure, the one that changed everything.

Rug

Now, the house was busting with company; friends and family had flown in from all over the U.S. to support us. Upon my arrival, our ‘guests’ quickly busied themselves with laundry, cooking, and grocery shopping so I could rest. I woke up about an hour later to find myself alone in the house while my husband picked up my prescriptions, my dad and stepmom picked up my brother and sister-in-law from the airport, and my mother-in-law picked up my kids. Never underestimate the power of an amazing support system!

I turned the shower on and stared at my face in the mirror while the water warmed. Did I look different? My reflection appeared the same on the outside, but on the inside, I was completely overwhelmed. My husband had stayed with me every minute in the hospital and I had stayed strong for him. I knew that if I crumbled, he would too. But, here, all alone, in our home, I allowed myself to feel the emotions that I had suppressed; anger; frustration; confusion; fear.

kneel

Instinctively, I fell to my knees on the bathroom floor. As the shower ran, I cried. And then my cries turned to screams. I screamed for my children and the possibility of them having NF2 too; I screamed for my husband because he doesn’t deserve this; I screamed for my dad because the worst thing in the world is to watch your child suffer. And then I screamed for me. I screamed out all the “why is this happening” and all of the “why me’s.” I screamed out all the frustration of being diagnosed with an incurable illness, and all my fears for what was next.

And then I prayed. I prayed like I had never prayed before. I prayed for all of the things I had screamed for just moments ago.

And then I was done. I have never been the type to linger very long in a self-induced pity party. I decided that would be my last tantrum; besides, my 4 year old was better at it anyway. I stood up, wiped the tears from my face, and let the shower wash away the hospital. Is it just me, or is there something seriously healing about a hot shower?

I had 23 days before I would be readmitted for my first craniotomy. It was the best gift I could ask for, and I was ready to make the most of it. 

I would never wish NF2 on anyone, but for the first time, I appreciated the diagnosis. It gave me the unique opportunity to look at life through a different lens, and reevaluate what was really important. I held my children longer, kissed my husband more often, and told all of the people I love that I love them. I fell in love with life again.

We took our boys to the park just to watch them play, introduced our 1 year old to the movie theater, brought our 4 year old to the best steakhouse in Denver, lit fireworks in front of our house on the 4th of July, and drank the expensive wine.

wine

A week before surgery, we took our boys to a Rockies game with one of my oldest friends who had flown in with her family from Kentucky, where I was raised. If you have brain tumors, I know what you’re thinking; the noise; the walking; the pain! But I went anyway, because I wanted so badly to see the joy on my boys faces and to experience something that had been normal for us before my diagnosis. I did it! I walked all the way around the stadium, cheered for the Rockies, and helped my babies to clap in all the right places, despite the noise. The Rockies lost that night, but I have never enjoyed a ballgame so much.

5 days before surgery, our best friends offered to take our boys for a fun sleepover, and Josh arranged a weekend getaway in Estes Park for just the 2 of us. We had some tough conversations about what could happen on the day of surgery, cried a little, laughed a lot, fed the squirrels on the mountain, and finished our weekend getaway with a great dinner at the Stanley Hotel.

Estes 2

By the time I went in for surgery, I had never been more certain that this life is so worth fighting for. I was ready.

This is my story, and it is not over yet.

Neurofibroma-what!?

CraniotomyMeg

Neurofibromatosis II. Neuro – Fi – Bro – Muh – Toe – Sis. NF. NF2.

The first time we heard this word was the day I was diagnosed with Neurofibromatosis Type 2 (NF2). I had never heard the word before, and had no idea what it meant.

Initially, all we knew was that I had two large masses (meningiomas) covering a good portion of the right side of my brain, causing partial seizures on the left side of my body. I was admitted to SkyRidge Medical Center, in Denver, for observation with the understanding that I could have brain surgery as soon as the next morning due to the sudden nature and severity of my symptoms. In the meantime, I spent a great deal of time in MRI machines (thank goodness I’m not claustrophobic), and had more tests and conversations with specialists than I could count. It was a complete whirlwind.

We learned so much in those initial days; NF2 is incredibly rare; it currently affects only 1 out of every 30,000 people; it is typically hereditary. Since no one in my family had been diagnosed, it was concluded that in my case, NF2 was the product of a spontaneous gene mutation, which is even rarer.

Each of our children had a 50% chance of having it too. That was devastating. My reaction? I needed to see my kids. They had been staying with family while my husband, Josh, and I were at the hospital. I couldn’t get my arms around them fast enough. As soon as they walked in the room, I pulled them right into the bed with me and studied their faces. Was it possible that tumors could be lurking behind those cute little eyes? Had there been signs? Had we missed something?

little visitors in the hospital

Every night before I fell asleep, I would pray that they wouldn’t be diagnosed in the days to come. I didn’t pray for me. I prayed for them. I knew that I would find the strength to endure whatever came next as long as my children were safe from the monstrosities of NF2.

The only fool-proof way to confirm the diagnosis is by genetic testing, which can take several weeks. We called our pediatrician, and she put in the orders for our boys to see Genetics. Since they weren’t showing signs or symptoms of NF2, we would have to wait, one of the hardest things I’ve ever had to do.

Unfortunately, I didn’t have the luxury of time on my side. Rather than starting the process for my own genetic confirmation of NF2, I was tested for characteristics of the disease. The hallmark of the disease is bilateral acoustic schwannomas (tumors in each of the ear canals). My MRI proved that I had one in my left ear. This causes balance issues, and will eventually lead to hearing loss in that ear.

The MRIs also showed meningiomas. At first, all the doctors could say was “several.” Then they said “many.” The final MRI report told us there were seventeen. SEVENTEEN little intruders hiding away in my brain. Thankfully, they all showed qualities of being benign, another indicator of NF2. But, they can still do as much damage as malignant tumors, and are often treated that way with forms of chemotherapy, surgery and radiation.

During one of several visits with a neurologist, I asked, “how long have the tumors been there?” He replied, “Probably most of your life.” I must have had a shocked and confused look on my face. He asked, “have you ever heard ringing in your ears?” My response was, “yes, doesn’t everyone?” Apparently not.

I soon realized not everyone loses their balance and falls over putting their shoes on; not everyone has headaches for five days in a row; not everyone slices their hand every time they use a knife; not everyone has over reactive reflexes as a child that intensify as they age. I had become so accustomed to these things that I didn’t even know they were signs. My body had been trying to tell me for years that something was wrong, and I had completely missed it.

Just when we thought we had finally wrapped our heads around everything, we were thrown another curve ball. Spinal tumors, often ependymomas, are another indicator of NF2. My MRIs showed them, too. I have six more invaders growing within my spinal cord; the largest one growing in my neck area. This is the scary one. Even if you’re familiar with my story, you may not know this. That bright white spot in the photo below can eventually cause paralysis from my neck down. The discovery of this tumor ended up being the reason I was released from the hospital. There was not a brain surgeon who would operate on me without weigh in from a spinal specialist first.

Spinal Cord Tumor

So, I was released, and connected to ‘the best’ neurosurgeon and spinal specialist in the area. We left the hospital with more questions than answers. We also left with the gift of time. Rather than being rushed into emergency brain surgery, I got to go home to my family. It was all I wanted. I had never been so grateful to just be alive.

I was working with one of the best neurosurgeons in the U.S., and I will always remember something he said to me during our first appointment, just a few days after my release. He said, “Nothing has changed. These tumors have likely been a part of you for the majority of your life. The only difference is now you know about them.”

He was right.

This is my story, and it is not over yet.

*DISCLAIMER: This blog documents my own experiences with Neurofibromatosis II. There are various forms of the disease, and every case seems to present itself differently. This blog is not intended to offer medical advice or counsel. Please refer medical questions to your team of doctors.

The Diagnosis

CraniotomyMeg

We are all vaguely aware that life can change in an instant, a heartbeat, a blink of an eye. In the backs of our minds, we know we’re one car crash, one decision, one diagnosis away from a completely different life. Yet, we don’t want to live in fear of the unknown, so we subconsciously suppress this truth until the day it smacks us in the face.

My story begins on the very day that I was blindsided; June 24th, 2018. Our family had just returned home from a beach vacation in South Carolina. Photo from our last night at the pier:At the Pier, Myrtle Beach

It was a Sunday. My husband, Josh, and I were doing housework while our four year old was teaching our one year old the best way to play with Play-Doh at our kitchen counter. It was such an ordinary moment, and we’d had a hundred others just like it… until I felt a horrible sensation rip through the nerves in my left arm. I told Josh, “my whole arm just went numb.” He asked if I was okay, and I could only respond “no” in between screams.

My skin felt like it was trying to harness golf balls moving wildly in my veins. Pain was everywhere; my neck, head, ear, ribs, and arm; all on the left side. Just when I thought it would never stop… it did, just as suddenly as it had started.

In an instant, I could hear again. My kids were crying; they were scared. My husband was on the phone with 911. I was kneeling on the kitchen floor, staring at my left hand.

It’s a funny feeling when your body moves without you telling it to. In an odd way, it felt like I had been betrayed by my best friend. My mind and body had been together forever, my mind knew my body better than anyone, and my body always did what my mind told it to do. Except for today. Today my body acted on it’s own accord, without any direction. It was terrifying.

By the time the ambulance arrived, I was already reassuring my frightened boys that mommy was just fine; “my arm just hurts and I need a doctor to look at it.” When I reflect on this moment, I often laugh at how ‘mom instincts’ tend to take over. Here I was, in the middle of the most terrifying moment of my life, and my need to protect and reassure my children was stronger than the fear I had for myself, or what was to come.

But, the second I stepped into the ambulance, I became the child, and the trained medical team did their best to explain what was happening, and keep me calm.  “It could be a stroke, but more than likely, it’s just a pinched a nerve,” the EMT had said. It was easy to believe him. I had never been a ‘sick’ person.’ Sure, I’ve had colds, but I’ve never been to the hospital, except for giving birth to our babies. I’ve never even had a cavity!

By the time we arrived at the hospital, I felt incredibly silly being wheeled in on a stretcher with my purse in my lap. As I was being steered down the long hallway, I caught the eyes of a young girl sitting in a hospital bed. We looked at each other for what seemed like a long time. Her face was full of worry. She had been crying. I couldn’t help but wonder what her story was.  Looking at her made me feel a bit embarrassed for rushing into the ER over a pinched nerve when there were people who needed those beds for more serious things. My thoughts were interrupted as my own bed took a turn and I was settled into a room nearby. Later, I wondered if she had the same thoughts about me.

Within minutes, I was being questioned, poked and prodded. Josh showed up sooner than I ever thought possible, having taken our boys to our neighbor’s house, and was sitting with me while we talked to a neurologist via video conferencing (thank you, Technology!).

When asked to explain the incident, I felt the same sensation tear through the left side of my body. This time, without my children present, and the hospital noises, smells, and sounds around us, a harsh reality started to sink in. Something was seriously wrong.

Screams and tears were pouring freely, and my arm was moving wildly on its own; I couldn’t control it. The hospital staff began to scramble, and medicine poured into my veins through an IV. Again, the episode stopped as suddenly as it had began, but this time, the hospital staff had seen it, and, they had suspicions of what was going on.

Over the next several hours, I was subjected to test after test, and answers began to come. First, seizure activity was confirmed. Then, we were told about the brain tumors; “several.” Finally, for the first time, we heard the word Neurofibromatosis II.

Although this news was detrimental, all I could do was laugh. I laughed so hard I cried. Were they sure they had the right scans? I couldn’t even pronounce the word; ‘Neurofibromatosis.’ I told the neuro that he had to be wrong; afterall, the EMT had assured me this was only a pinched nerve.

MRI - Tumors

Despite my inability to comprehend what was happening, I was admitted for further observation. My husband never left my side. He made all of the right phone calls, asked all the right questions, and let me fall asleep that night in ignorant bliss, thinking there had to be some sort of mistake.

I was woken up he next morning for a blood draw. The lights were turned on for visibility, and Josh was laying on the hard couch in the room. His eyes were open. We stared at each other until my blood had filled 4 vials, and the phlebotomist left the room.

Then, Josh said said the 5 words that made everything true; “it’s going to be okay.”

That was the moment I realized this was not a dream. It was real. I had Neurofibromatis II; a diagnosis that would change my life. I wasn’t quite sure yet exactly what was going to change, but I knew it was big.

I’ve always believed that although we don’t get to choose what happens to us, we do get to decide how we react to it. These are the moments that define us.

This is my story. And it is just getting started.