Tag: brain tumor

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

 

Bombs & Brain Tumors

CraniotomyMeg

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.

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.