My Ponytail

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 timesit 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;

img_5643

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;

img_5657

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;

mexico.jpg

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.

ponytail3

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

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!

32

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!**

Bombs & Brain Tumors

At the center of our humanity is a need for connection, and I am a firm believer that God gives us the people we need in our lives, at just the right time. 

20 years ago, God put Bekah in my life. 15 years ago, He made us best friends.

 

Exactly 6 years ago today, He nearly took her away. She had been standing less than 3 feet away from the first bomb that went off, at the finish line of the Boston Marathon Bombing.

10 months ago, the day I was diagnosed with Neurofibromatosis II, she was the first person I wanted to call. She was the only person who would understand. But I couldn’t. 

I knew that if I called her, I would just cry, and I wouldn’t be able to get words out. So, I texted her…

“I was taken to the hospital in an ambulance last night after an episode at home… Apparently a headache I’ve been experiencing for the last couple of days is serious. A CT scan showed multiple brain tumors, one of which is causing seizures on my left side. I was admitted and am having a MRI done this morning and then developing a plan with a neurosurgeon. We definitely need to remove the tumor; it sounds like I will go into surgery sometime tomorrow. I’m so sorry.”

I apologized at the end, because I knew exactly how she would feel after reading it: the same way I felt upon learning that she’d been blown up by a bomb. 

Her next message was plain and simple, “I’m getting on a plane today. I love you.

Upon learning of my condition, there were several people who jumped on flights, and in their cars to get to Colorado, but Bekah was the first one to arrive. She even beat my dad and stepmom by a couple of hours!

As soon as she walked into the hospital room, she jumped right into bed with me, and both of our eyes filled up with tears.

Neither of us needed to say anything; she knew exactly how I felt, and I knew exactly how she felt. I’d grown accustomed to seeing her in a hospital bed, and she’d gotten used to me visiting… neither of us expected to have the roles reversed.

That night, after all of our visitors left, and the hospital became quiet, Bekah sent my husband home. He knew I was in good hands, and I knew he needed a good night of sleep.

Like any reunited friends do after time away from one another, Bekah and I stayed up talking, laughing, and crying until the crack of dawn. Eventually, she took her prosthetic leg off.

When a nurse came in to take my stats, Bekah joked, “let me move my leg for you.” My nurse smiled comfortably, as only nurses know how to do, and casually asked what happened.

It was a story I had heard so many times before, but that night, something was different as I listened to Bekah talk about how she had been less than 3 feet from the first bomb that went off, separated from her 5 year old child, rushed to the hospital, and finally had her leg amputated due to the severity of her injuries.

As she spoke, I mentally filled in the blanks, remembering how mangled her body had been, how her hair had been singed away by the blast, how she’d endured 67 surgeries, how much shrapnel was still embedded in her muscles, and how many nights she’d called crying. How she’d almost died.

Bekah

But, in true Bekah fashion, she never got lost in the horrific details of that experience. She always stayed positive; stating the facts and how she’s grown as a person because of it.

She said, “Being a victim is a not a choice, but being a survivor is.”

Although that night was like so many others we’d spent together, it will always stand out in my memory. It was the night I decided to be a survivor too. 

When the time came for me to go home to my family, and Bek to get home to hers, she left me with a necklace that said “Be Brave.”

Around her own neck she wore “Be Strong.” It had been given to her as a gift after the bombing. It had come with a match, ‘Be Brave,’ and a note that said one day, she would know who to give it to.

be strong be brave

She’d held onto ‘Be Brave’ for 6 years before placing it around my neck.

I wore it every day until surgery. It was exactly what I needed to overcome my own challenges. Every day I would look at it and be inspired to find the beauty amid tragedy, just as she had.

Brave

After my first craniotomy, the first words I said were, “God is not done with me yet.

If you’ve been following my story, you already know this. What you may not know is that it was a subconscious line that I had heard before… they were the same words Bekah said upon waking from her medically induced coma after the bombing.

In a state of semi-consciousness, we both said the exact same phrase during the toughest moments in both of our lives.

Perhaps it is all of those years of friendship that have entwined our strength together, or maybe, just maybe, those words are true;

God is not done with us yet.

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

A letter to my sons, written the night before brain surgery

July 19, 2018

Dear Meatball & Rooster,

boys2

One of life’s most precious gifts is that it is fleeting. Everything you’ve ever known can change in a second, a minute, or just a few hours.

On Sunday, June 24th, 2018, I had a seizure on our kitchen floor, right in front of you while you were playing together with Play-Doh, and was rushed to the hospital in an ambulance. We found out hours later that I have tumors in my brain, ear canal, and spinal cord, and they’re beginning to show symptoms, requiring surgery.

While this is all very new and scary, my decision to move forward with the surgery is intentional, and I’m doing it because of my love for you. I have so much to fight for, and I need you to know that I am doing this because YOU are worth it.

Boys

As the days have passed, and we draw nearer to surgery, we’ve had the unique opportunity to look at life through a new lens. Everything is different, and yet nothing has really changed at all; we simply have knowledge that we didn’t before June 24th and a diagnosis that wasn’t there before.

I’ve never taken our time for granted, but still each moment seems sweeter now, and its an incredible blessing to experience life this way.

The little things are the big things; watching you sleep, and imagining all of the things you’ll accomplish in your lifetime; taking you to a baseball game; holding your little hand as long as you’ll let me; teaching you to ride bikes; and hearing you giggle. I find myself staring at you often, trying to capture each memory and hold onto it forever.

My prayer is that one day this will all be a distant memory; a thing that happened; a chapter that has closed. Although you are both intuitive, I know that you are too young to remember all of the details of these pivotal moments. But, your daddy and I will remember, and when you’re ready, we will remind you of how these days unfolded, and why we made the choices we did.

I want so badly for this to be a story of strength and triumph that will inspire you to live your best life without fear of the unknown. I want to watch you grow up, and face your own challenges head on. I want for you to see that life is a beautiful thing that should never be taken for granted.

We are never promised tomorrow, and we need to make each day count. There are things that are within our control, and things that we have to leave to faith. So, for now, I am simply trusting that God’s plan is the same as mine.

If there is one thing I can weave within these words and capture here for you forever, it would be my undying, unrelenting, neverending love for you. It is something truly tangible that you have the ability to carry with you long after I’ve left this earth.

Please, don’t ever doubt the power of a mother’s love for her children.

Mom

I love you all the stars in the sky; I love you all the angels in heaven; I love you all of the leaves on all of the trees; I love you all of the fish in the sea; I love you all the raindrops in the ocean; I love you all of the miles to the moon and right back down again.

Love,

Your mommy

 

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).

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 little deal that I had made with God; when I prayed 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. I held up my end of the bargain, 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.

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 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.”

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!

img_3898

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.