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.

Craniotomy Me… Again

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

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

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

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

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

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

waking up

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

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

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

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

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

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

my head

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

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

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

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

home again

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

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

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

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

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

Surviving

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.

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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.