Fall for a Cure

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 famuly 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

 

Okay.

As a society, we do a poor job of talking about mental health. In turn, we’ve created a stigma that everyone is simply supposed to be ‘okay’ all of the time.

Last week, a friend sent me a text message, just like she does every week. It read, “How are you feeling?” Automatically, I responded, “I’m okay! How are you?”

Then, I thought about it. Physically, I’m okay; I haven’t had a seizure since February, my headaches have gotten better since surgery, and side effects of the chemotherapy drugs are subsiding. But, mentally, I knew I had not been okay.

I quickly responded, “Actually, I’m not okay. I’m struggling. I feel super stressed and overwhelmed. Thanks for caring!”

It was a truth I had known for weeks, and had been trying to ignore.

It started small; work seemed to become more stressful; my children became more difficult; cooking dinner became a task. Life’s normal stressors suddenly became unbearable. I noticed that I was becoming irritable, emotional, and forgetful.

It began to affect me at work. It started to creep into my relationships. It was affecting my life.

One night, I completely lost control. My phone rang, while my youngest was in the middle of a two year old tantrum, and I was trying to cook dinner. It must have been the straw that just broke my back. I screamed in frustration, and smashed my iPhone 8 into the kitchen counter until the screen shattered.

iPhone

Immediately, I looked down at my phone in horror, and broke into tears of confusion. I felt instant regret and humiliation. What had I done? What was happening to me?

In that moment, I had felt enraged; it was so out of character that it frightened me.

The next few days were like torture; I felt as though I was skating on thin ice that might break from the slightest whisper.

I had wild, out of character thoughts, and struggled to get through every day.

Still, I tried to rationalize my feelings, thoughts, and odd behavior. Maybe work really was more stressful than normal. Maybe my children’s behavior really was getting worse as they grew into new stages. Maybe I just needed to work out, or change my diet.

Another night, I easily became frustrated when putting my children to bed because they were delaying brushing their teeth. My five year old said to me, “I’m sorry you’re not happy mommy. I just want you to be happy.

His words hit me like a ton of bricks. How was it that a child could so easily see what I was trying to hide away? I assured him that I was okay, but as he fell asleep on my lap, I knew I was lying. I was not okay.

That night, I cried in the shower, finally admitting to myself that I knew something was wrong, and that I needed help. I prayed that God would help me see through this storm and give me the strength I needed to help myself.

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I reached out to my oncologist the very next morning and within hours, I had answers. While menopause can cause abnormal reactions and mood swings, my oncologist thought my feelings were more likely a side effect to my seizure medication, Levitiracetam, a generic form of Keppra, due to a recent (and very slight) change in my morning dosage.

The relief I felt was instantaneous: I wasn’t losing my mind. I was having a drug reaction.

As I researched ‘Keppra Rage’ (yes, its a thing), I felt like I was reading my own story. It can come on suddenly and severely, sometimes after someone has been on the drug for long periods of time. It’s absolutely terrifying, because it escalates quickly, and can end in horrifying ways.

Everything seemed to click; I had been on Keppra for over a year, but never had been on one dosage in the morning (1000mg) and another at night (1250mg). I realized my feelings had been worsening at night, when I was due for a dose of Keppra.

Every time I picked up my seizure medication, the pharmacists had reminded me of the side effects, and still, I had missed the signs.

Oncology connected me to neurology, and my side effects were confirmed over the phone. My dosage was lowered to 1000mg at night to match my morning dose.

I was also scheduled for an EEG. If my results show no electrical activity in my brain anymore, then I will be weaned off the medication. If I do still show seizure-like activity then we will explore other treatment options.

My only regret is that I didn’t ask for help sooner. But, I learned some very valuable lessons through this experience;

It’s okay to not be okay.

Its okay to have bad days. It’s okay to not be perfect all the time. It’s okay to fall to your knees. And, it’s okay to ask for help.

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

 

If you, or someone you know needs help, you are not alone. 
 
In an emergency or crisis, call the National Suicide Prevention Lifeline: 
1-800-273-8255
Confidential help is free. 
 

 

Choose Hope.

You have a choice to make,” my oncologist said last week. “We can wait another 3 months, do another set of MRI’s and then make a decision, or we can treat aggressively now, knowing that tumors in NF2 patients are known to grow over time.

Let’s be real. Neither of these options sounded great;

  1. Wait for the tumors to grow, and then react.
  2. Proactively treat tumors that will inevitably grow.

I also knew I had a third option; 3. I could do nothing. I was just starting to feel ‘normal’ again after being diagnosed with NF2, and having 2 back to back brain surgeries. I missed life before my diagnosis. 

But, pretending as though the tumors are not there will not make them disappear. Doing nothing will not give me more time with my family.

So, I quietly dismissed the idea of doing nothing, resolving myself to do something, and listened as my oncologist explained the pros and cons associated with Hydroxyurea.

It is a pill form of chemotherapy that I can take at home, without needing intravenous infusions. It works by slowing down rapidly growing cells, which could potentially keep all of my tumors at bay.

I asked my oncologist, “if it were you, which option would you choose?” He replied, “I would start taking it immediately.

So, after a lot of research, and lengthy conversations with my medical team, I’m choosing to fight. I choose hope.

My oncologist put the order in for the chemo pills, and a heavy duty anti-nausea medication.

chemo

I will begin treatment today, June 24th, exactly 1 year from the day I was hospitalized for seizures and diagnosed with NF2.

I will need to go in for lab work once a week to be sure my body is strong enough to withstand the medication. The drug can make me nauseous, lose the little hair I have left, lower my already weakened immune system, make me feel extremely tired, and experience flu-like symptoms.

But, more importantly, it gives me a chance to fight my tumors and diagnosis while still continuing to live my life; I can still hold my kids, walk my dog, drive a car, go to work, and get in the ocean when we go back to the beach.

So many things have been controlled by NF2 over the past year; but choosing hope over fear is something I am very much in control of.

My kids may see me THROW up, but they will never see me GIVE up.

I don’t know yet what this chapter looks like, but this is still my story, and it is not over yet. 

 

A day in the life of a mom (with brain tumors)

5:45AM. Crying sounds coming through the baby monitor. Why is our youngest always awake before the sun?

5:46AM. Upon being pulled from his crib, our youngest hastily demands his dad (who has already left for work), orange juice, a potty break, a new pair of pants, and a phantom toy that I am not sure exists. I raid the medicine cabinet for my various morning medications before the screaming can escalate.

medicine

5:47AM. Too late; my youngest is screaming like a banshee over the toy that does not exist. I pray that my medicine kicks in quickly.

6AM. My youngest finishes throwing a major tantrum and wants to “snuggle” and say “I love you mommy.” So I cave, and forgive him for screaming like a banshee over the toy that does not exist.

6:30AM. Time to wake my oldest. I need coffee. He hates to be woken up for school.

Grumpy Morning

7:00AM. We’re going to be late. Everyone out the door! I fasten 2 grumpy children into their car seats to contain them while I pack lunchboxes, vitamins, a backpack, a diaper bag, and snacks for the 5 minute car ride.

7:05AM.  I pull out of the driveway but realize I forgot my laptop (or phone, or lunch, or coffee, or homework, or something equally important).

7:10AM. I pull out of the driveway again while trying to explain to my 5 year old that yes, he will have to brush his teeth every morning for the rest of his life.

7:30AM. Drop off child #1; whichever is the loudest while navigating out of the neighborhood is the one who gets dropped off first. 

7:45AM. Drop off child #2.

7:46AM. Listen to the sound of quiet, take a deep breath and a drink of coffee. Is it normal to feel like you’ve run a marathon before 8am?

7:47AM. Call dad while driving to work.

12PM. I usually use my lunch break to review my most recent lab results or call Neurology, Oncology, or another equally important specialist, to schedule my next appointment.

2PM. My youngest child’s school calls. He’s coughing uncontrollably. Seriously, where was that cough this morning? I explicitly remember screaming… but no cough.

2:30PM. I arrive at school to pick up my potentially sick boy.

2:45PM. I call our pediatrician because my baby truly is coughing like crazy and sounds like he has croup. Again.

3:30PM. Pediatrician confirms my sick boy does, in fact, have croup. Again.

Doctor's Office

3:45PM. I call my husband to tell him we have a sick boy. Again. He knows the drill. He’ll get Pedialyte, Eucalyptus, cough drops, and more Motrin on his way home.

4:15PM. Watch Aquaman for the 106,715th time while holding sick boy in left arm, and replying to my remaining work emails with my right.

5:15PM. Time to pick up my oldest.

5:17PM. Our oldest flings his shoes off in the car and one misses my head by an inch. I explain, once again, that it is not nice to throw things at anyone’s head, especially mine.

5:40PM. I’m starving (did I even eat lunch?). I throw a protein and veggie into the oven and begin The Dinner Countdown.

5:50PM. “It’s almost dinner time, boys!”

5:55PM. “Come and eat, boys, it’s dinner time.

5:56PM. “You better come eat or it’s going to be cold.

5:57PM. “Can anyone hear my words?

6PM. I finally herd our children to the dinner table – success! But, then my husband walks in the door, and they both abandon their plates to attack him with hugs (can’t even blame them).

Daddy Hugs

6:15PM. Both boys want snacks. So badly, in fact, that they’ve dumped an entire bag of veggie straws onto the floor. Why do I even bother making dinner?

veggie straws

6:30PM. Bathtime. I listen to my husband (try) to contain our children in the tub while I pick up rogue Legos (because those things hurt when you step on them), and socks. How many pairs of socks do 2 little boys wear in a day?

7:15PM. Bedtime. My husband and I split forces; it’s best if we split up. I take one kid, and he takes the other. We turn into human servants while we retrieve water, read books, brush teeth, kiss all of their owies, and tuck them in.

8:15PM.  Bedtime. For real this time.

8:30PM. Once we’ve ensured both boys are snoring in their beds, my husband and I get to relax. We chat about our day while packing lunches for the next, and then watch a TV show together.

9:30PM. The last thing we always do before we fall asleep is say, “I love you.

…If you’re still reading it’s because you can totally relate to the busy life of a working mom, or you’re waiting for a dramatic line about having a stress related seizure, or an unbearable migraine.

But, the truth is, most of my daily challenges are toddler-related, not tumor-related.

Sure, I take more medicine than most, and have to be more conscious of things flying at my head than most, but having tumors does not consume my day. My family consumes my day.

In the title of this blog, “A day in the life of a mom (with brain tumors),” I put “with brain tumors” in parenthesis to make a point; I am, and always will be, a wife and a mom, and so many other things before I am someone with brain tumors. 

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

Through a Child’s Eyes

It’s normal for children to have boundaries. Don’t touch the stove; be careful going down the stairs; look both ways before crossing the street; chew with your mouth closed; pick up your shoes and take them to your room.

But, in our house, our children have to abide by an extra set of rules. No loud sounds in the morning, until my medicine kicks in. Hold my right hand, because I can’t feel the left. Don’t scream in my ears. And, don’t ever, ever, ever hit mommy in the head. 

sleeping

Part of me is grateful that my 5 year old knows what to do if there is an “emergency.” Another part of me feels like his childhood is being robbed from him.

bikes

Then, last week, something happened that completely changed my perspective.

I went to the grocery store alone (a rare occurrence). I was bagging ears of corn when a 5 year old boy that I’d never met before came right up next to me and struggled to reach the bags. Just like I would help my own son, I pulled the bag down for him, and held it so he could load 6 ears of corn into it. He smiled, and thanked me “so much.”

Then I turned around and watched him walk back toward a woman who was holding a walking stick; she was blind, and holding the hand of a small boy who looked to be about 2 years old. They had a red wagon full of groceries. 

After he placed the heavy bag of corn into the wagon, I watched as his mom whispered another order to him, and off he went, to the leafy lettuce.

There are so many parallels here. Most obviously, the boys; they were the same ages as my own. I also felt connected to the mom; grocery shopping with 2 boys is hard. Doing it with a disability is even harder! 

Without hesitation, I pushed my cart to the side of the aisle, and walked over to the boy. “What else do you need? Can I help you find something?

He smiled so widely, and said he was trying to find kale. I asked his mom if she wanted organic, and then helped them check every other item off their list; spinach, cantaloupe, raisins, carrots.

When we finished, I said “it’s so nice of you to help your mom!” He shrugged nonchalantly, waved goodbye, and began to guide his mom toward the check out aisle.

I watched them walk away, and couldn’t keep the tears from pouring down my face.

Through that little boy’s eyes, nothing out of the ordinary happened at the grocery store. And, while I’ve been struggling with the harsh reality my kids are facing, they likely don’t think it’s out of the ordinary to be cautious of hitting my head, or play quietly when my head hurts.

hats

I still hate that my children have seen their mom having seizures, taken away by ambulance, and in a hospital bed. But, they’ve also seen me overcome.

They’ve seen how their daddy stepped up to take care of us when mommy couldn’t, and how family comes together in times of need. They met the doctors who cared for me, and saw how important it is to take care of our bodies. They’ve seen what unconditional love looks like. They saw healing, and they learned compassion.

Everyone needs help every once in a while, and everyone faces challenges. The sooner we teach our children that, the better.

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

 

 

 

 

 

 

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;

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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;

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.

Scanxiety

It starts in the pit of my stomach; every time I have tinnitus, every time I lose my balance, every time my eye twitches. And when my headache starts to feel a little bit worse, it’s like I can picture the tumors growing. Or even worse, what if there’s a new one??

The feeling intensifies while I’m in the MRI machine; ear plugs inserted, pads on either side of my head, an IV in my arm, and a cage over my face to hold me perfectly still while unnaturally loud sounds bang obnoxiously around me.

It heightens every passing day after the appointment; constantly checking my phone, waiting for the news with curiosity of the images that were formed, and anxiety of the story they will tell.

Scanxiety.

Those of us with brain tumors live on the ever present edge, hoping, praying and waiting to hear the words “I have good news,” and powerfully fearful of getting a phone call that says otherwise.

Thankfully, this time, all of my specialists were in agreement; first my spinal specialist, then radiology, and finally my ENT; “no growth,” “stable” and “good news!”

Every time we hear the words we are hoping for, relief and gratitude flood my body. I think, “Safe (for now)!”

Although it is a huge success, we know it’s not permanent.

In 3 short months I will repeat the MRI process, hoping and praying for the exact same results.

In the meantime, I’m making the most of the next 3 months, because every victory is worth celebrating, no matter how small, for as long as we possibly can!!

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