Surviving

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

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.

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.”

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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.

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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?

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.

Neurofibroma-what!?

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?

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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.