Tag: craniotomy

Fall for a Cure

CraniotomyMeg

Upon being diagnosed with a rare disease, there was something that automatically made me feel alone.

Neurofibromatosis (NF), type 2, is incredibly rare. When I was first diagnosed, even those who had heard of NF before, were typically more familiar with type 1. Both types are considered genetic mutations that cause tumors to grow; type 1 causes tumors to grow on and under the skin while type 2 causes tumors to grow throughout the neurological system (brain and spine).

During one of many afternoon visits with my ENT specialist, I asked him if there were support groups for people with NF2 in Colorado. He told me there are only 5 estimated people in the entire state with NF2. That afternoon, he also advised me to stay away from online support groups as “they are generally very negative.” He said, “most people with NF2 have had it for a very long time, and their conditions only get worse.” He commended me for my positive outlook, and said “I want you to keep looking on the bright side.”

Well, I’ve never been one to follow good advice, so I began looking into NF2 groups on social media channels. 

Reading through the monstrosities of NF2 was difficult at first, but then it started to compel me to find the “bright side.”

I found Christina Menkemeller.

After realizing how much we had in common, and how similarly we thought, we agreed to meet for ice cream.

It was the first time I’d met someone else with NF2. And, it was empowering!

Meeting her opened the door for me to step even more into the NF Community, and all of the amazing friendships and experiences that came with it.

Shortly after, The Children’s Tumor Foundation invited me to attend a Colorado Rockies game and go on Coors Field to accept a generous donation.

Then, I gathered a team of friends and family to walk a 5K in support of the National Brain Tumor Society.

I also got the opportunity to introduce my oldest son to Ian Desmond, Colorado Rockies outfielder, and advocate for the NF community.

Every time I got involved, I felt the strength of community, and inclined to do more to support the mission to raise awareness and funds for a cure for NF2.

I fell in love with the idea of being cured. And, it motivated me to do something big! So, I gathered a team to help me, and decided to throw my own fundraiser, called Fall for a Cure, to benefit gene therapy and NF2 BioSolutions.

 

Volunteering my time and energy to do something good for this community and the people I have met is what keeps me hopeful that a cure is within reach. It gives me purpose.

Plus, I’ve never been the type to give up.  

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

 

**To purchase tickets or make a donation, please visit Eventbrite and search Fall for a Cure.

https://www.eventbrite.com/e/fall-for-a-cure-tickets-62163968102?aff=ebdssbdestsearch

 

My Ponytail

CraniotomyMeg

I wore my hair in a ponytail the other day. A ponytail! While this may be an everyday occurrence for some people, it was a major milestone for me.

It’s now been 6 months since my last craniotomy.

After surgery, my recovery was so gradual that sometimes it felt as though I would never get better. At times, it even felt like I was getting worse because progress was so minimal from one day to the next. I had never been so physically broken.

Then, months after surgery, I started to realize how much progress I had actually made. There were several milestones, and they started small; the first time I held my own head up for an hour; the first time I stood up after surgery;

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Even coming home from the hospital was a celebrated milestone. Then, the first time I walked to the bathroom without the cane; the first time I slept through the night; the first time I went an entire day without a nap or pain medicine; the first time I was able to hold my kids;

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Then the milestones became more spaced out; the first time I was able to drive again; the first time I did 10 minutes of physical activity (running in place); the first time I was allowed to get on an airplane; the first time I could tolerate wearing a hat, and the first time I was able to submerge my head under water;

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But, until just recently, I still hadn’t been able to tolerate wearing my hair in a ponytail.

When it happened, it was completely unintentional. I’d had a long day at work, and was washing the make-up off of my face. My hair clip had gone missing (a common occurrence in a household with 2 toddlers who “borrow” anything that looks remotely interesting). So, instead, I grabbed a black hair tie from the bathroom drawer, and awkwardly pulled my now short hair into a tiny ponytail.

Then, my boys came running in like whirlwinds. As always, they needed milk, water, a stuffed animal, books, and help brushing their teeth before bed.

Nearly an hour passed before I realized my hair was still in that tiny ponytail. I went to the mirror and looked at my reflection. I smiled. Another milestone. Another small reminder of the progress I continue to make.

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I am not fully healed yet. But, that pony tail promises that one day soon, I just might be. 

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

Meningiomas and Menopause

CraniotomyMeg

I think all of us are equipped with instincts as children that give us hints of who we will one day be. For some, it could be a draw to medicine, animals, science, sports, etc.

When I was a child, I always knew that I would be a career woman, and a mommy.

I was lucky enough to have 2 beautiful pregnancies that resulted in 2 perfect boys:

(They may look similar, but those are actually 2 different babies that both look exactly like their daddy!)

When I was pregnant with our last baby, we knew he would be our last. My husband and I had always envisioned a life with 2 children, and we are beyond blessed to have fulfilled that dream.

Shortly after I finished nursing our youngest baby, I began having seizures that lead to the discovery of 23 tumors in my neurological system and a diagnosis of Neurofibromatosis II (NF2).

After having 2 craniotomies to remove meningiomas, we learned why the symptoms showed themselves so suddenly; the same hormones that created those babies had actually caused my tumors to grow as well.

In hindsight, I’m so glad that we didn’t know of my diagnosis until after I had given birth to those boys. Otherwise, I know that we wouldn’t have them. 

Every time we hear the dangers of pregnancy for NF2 patients, it reinforces how lucky we are to have completed our family… and even luckier that neither of our boys inherited my genetic disorder.

After surgery, we began to consider our options for long term care. My oncologist was the first to teach me that chemotherapy comes in many forms. I’d assumed it would be like what I’ve seen on Grey’s Anatomy; a sickly person with no hair in a cold chair, hooked up to an IV for hours. 

Instead, my first round of chemo is a light drug called Lupron. It is easily given by a quick injection, and works by killing my ovaries, and therefore eliminating all of the hormones from my body. The idea is that we may be able to starve my meningiomas by cutting off the hormones that feed them.

So, in February of 2018, I finished nursing our last baby. And, in February of 2019, I started going through menopause. That’s right; the injections have put me through medically induced menopause at just 32 years old.

Hot flashes. Irritability. Weight gain. Hot flashes. Sleeplessness. Forgetfulness. Hot flashes. Headaches.  Did I say hot flashes?

Thank goodness this Spring in Colorado has been cold enough to help me maintain my body temperature!

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I debated sharing this picture, because if you look closely, you can see a chunk of new hair flying straight up. It is something I am so insecure about; a small, yet ever present reminder of the brain surgery I had just 6 months ago.

But, I’m sharing anyway. Because there are pieces of this journey that are not pretty. There are pieces that do not lie down exactly how we want them to, and that’s okay.

Those are the pieces that remind me how far I’ve come since my diagnosis just 10 months ago, and they continue to motivate me to keep pushing through the inevitable hard days.

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

**To those of you struggling with fertility, those who are unable to have children due to medical complications, and those who have children with genetic disorders, our hearts and prayers go out to you!**

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.

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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).

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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).

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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;

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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.

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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.

Two Miracles

CraniotomyMeg

Leaving the hospital after having my first craniotomy was very similar to leaving the hospital after having my first child. I was terrified; I was in pain; I had a new incision (rather than a new baby); and I had no idea how to take care of it.

Before my diagnosis of Neurofibromatosis II (NF2), before brain tumors, before craniotomies and seizures, I was a very normal person. On any given weekday, I took my boys to school, worked a full day, and made my family dinner. I had been an active person, not just chasing toddlers, but going to the gym, advancing my career, going on family bike rides, and escaping for weekend camping trips.

After surgery, everything was different. I needed help with everything. My husband, Josh, poured my water, dispensed my medicines, helped me to the bathroom, and so much more. Light was intolerable and sounds were excruciating. Even the sound of my own voice was enough to make my head pound. My whole left side was numb and tingling, making it difficult to walk; I left the hospital with a cane that I relied upon to keep me upright. My daily goal after surgery was to hold my head up for 30 minutes a day.

Despite all of the tough adjustments, the hardest thing I’ve ever had to do as a mother is prioritize myself. Having brain surgery temporarily forced me to take a backseat in the daily lives of my children and focus on my health. My husband took care of me, and his mom took care of our kids. She was able to provide them everything that we couldn’t during that time; routine, consistency, and more support than we could have asked for.

Slowly, I made progress. Every day brought small triumphs. After a week, I ventured outside for the first time, and sat in our driveway for a whole hour, watching our boys play and eat peaches.

After two weeks, I was able to sit in a shaded pool chair for two hours. I couldn’t get in the water, but I could watch our boys splash each other, and smother sunscreen onto their bare skin.

After three weeks, we went out for dinner for the first time;

After five long weeks of healing, my weight restriction was finally lifted and my neurosurgeon agreed it was safe to hold my children. I hadn’t held them since surgery. Think about that one for a moment… I had a 1 and 4 year old, and I couldn’t put the baby in his high chair or crib; I couldn’t lift them into their car seats; I couldn’t pick them up off the sidewalk when they fell down; I couldn’t even let them play monkey on my legs.

The second that changed, I couldn’t wait to get them both into my arms… and it was worth the wait! I went straight to their school after the appointment, and nearly ran through the hallways to their classrooms. I scooped my oldest up first; as I did, I said “guess what?” His brown eyes widened, “you’re holding me!” Although their friends at school probably thought I’d lost my mind as I cried and held each of them, it was one of those moments I will never forget… and never take for granted again.

The most important thing I ask myself when I make medical decisions is “will this allow me to continue to put my arms around the people I love, and tell them that I love them?” When the answer is yes, I consider it a viable option. That was exactly why I had decided to have the surgery to begin with; it was the only thing that allowed me to continue making memories with my family.

For that same reason, we had decided to move forward with genetic testing for myself and our boys. If they did share my diagnosis, we needed to be proactive in their care.

Six weeks after surgery, our geneticist confirmed my gene mutation as spontaneous. She said only 7% of my cells were affected. Seven percent. Isn’t it amazing how much damage a mere seven percent can do!?

She had described my condition as “unlikely,” “like getting hit by lightening.” She said “no one knows why this happens,” and “it can happen to anyone.” She also confirmed that each of our children had a 50% chance of having NF2 too. If they inherited it from me, it would mean that 100% of their cells would be affected; their condition would be worse than mine.

Every single night since being diagnosed, I had prayed over each of our boys as they slept. As we learned more about the monstrosities of NF2, I became more fearful and prayed harder and harder.

“Please, God, don’t let my children have to endure these hardships. They’re just babies. I want nothing more than to protect them. All I’ve ever wanted is to take the sick away from them. I would gladly have a thousand surgeries and tumors if it means they don’t have to have one. Let me do this for them. Let it just be me. Show us your love. Show us your mercy. Show us your miracles; they deserve it.”

Finally, ten weeks after surgery, my cell phone finally rang with the news we had anxiously been waiting so long for. Our geneticist blurted out, “they both tested negative for NF2!!”

Relief flooded every cell of my body, and started pouring out of my eyes. I was so emotional that I couldn’t drive, and had to pull over.

The first thing I did was call my husband, Josh. Whenever I call during the middle of the day, he answers the phone with “Hey babe, are you okay?” I knew he would hear my tears, so I quickly shouted “they don’t have it! They don’t have NF2!!” I must have said it ten times before he understood me. I could hear the news sink in over the phone, and he began to tear up and smile as well.

Finally, we had some uplifting news to share with our support system! I happily began calling everyone we knew. Each time I said “they don’t have it,” I was filled with more hope.

HOPE

It was a huge turning point for me; my whole perspective had shifted. Right in the middle of hardship, we had been given 2 perfect little miracles. It filled me with the courage I needed to continue fighting my battles.

There were more tough days ahead, but now I had all the fuel I needed to overcome.

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).

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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.

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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

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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.

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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.

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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.

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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.

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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.