The Diagnosis

We are all vaguely aware that life can change in an instant, a heartbeat, a blink of an eye. In the backs of our minds, we know we’re one car crash, one decision, one diagnosis away from a completely different life. Yet, we don’t want to live in fear of the unknown, so we subconsciously suppress this truth until the day it smacks us in the face.

My story begins on the very day that I was blindsided; June 24th, 2018. Our family had just returned home from a beach vacation in South Carolina. Photo from our last night at the pier:At the Pier, Myrtle Beach

It was a Sunday. My husband, Josh, and I were doing housework while our four year old was teaching our one year old the best way to play with Play-Doh at our kitchen counter. It was such an ordinary moment, and we’d had a hundred others just like it… until I felt a horrible sensation rip through the nerves in my left arm. I told Josh, “my whole arm just went numb.” He asked if I was okay, and I could only respond “no” in between screams.

My skin felt like it was trying to harness golf balls moving wildly in my veins. Pain was everywhere; my neck, head, ear, ribs, and arm; all on the left side. Just when I thought it would never stop… it did, just as suddenly as it had started.

In an instant, I could hear again. My kids were crying; they were scared. My husband was on the phone with 911. I was kneeling on the kitchen floor, staring at my left hand.

It’s a funny feeling when your body moves without you telling it to. In an odd way, it felt like I had been betrayed by my best friend. My mind and body had been together forever, my mind knew my body better than anyone, and my body always did what my mind told it to do. Except for today. Today my body acted on it’s own accord, without any direction. It was terrifying.

By the time the ambulance arrived, I was already reassuring my frightened boys that mommy was just fine; “my arm just hurts and I need a doctor to look at it.” When I reflect on this moment, I often laugh at how ‘mom instincts’ tend to take over. Here I was, in the middle of the most terrifying moment of my life, and my need to protect and reassure my children was stronger than the fear I had for myself, or what was to come.

But, the second I stepped into the ambulance, I became the child, and the trained medical team did their best to explain what was happening, and keep me calm.  “It could be a stroke, but more than likely, it’s just a pinched a nerve,” the EMT had said. It was easy to believe him. I had never been a ‘sick’ person.’ Sure, I’ve had colds, but I’ve never been to the hospital, except for giving birth to our babies. I’ve never even had a cavity!

By the time we arrived at the hospital, I felt incredibly silly being wheeled in on a stretcher with my purse in my lap. As I was being steered down the long hallway, I caught the eyes of a young girl sitting in a hospital bed. We looked at each other for what seemed like a long time. Her face was full of worry. She had been crying. I couldn’t help but wonder what her story was.  Looking at her made me feel a bit embarrassed for rushing into the ER over a pinched nerve when there were people who needed those beds for more serious things. My thoughts were interrupted as my own bed took a turn and I was settled into a room nearby. Later, I wondered if she had the same thoughts about me.

Within minutes, I was being questioned, poked and prodded. Josh showed up sooner than I ever thought possible, having taken our boys to our neighbor’s house, and was sitting with me while we talked to a neurologist via video conferencing (thank you, Technology!).

When asked to explain the incident, I felt the same sensation tear through the left side of my body. This time, without my children present, and the hospital noises, smells, and sounds around us, a harsh reality started to sink in. Something was seriously wrong.

Screams and tears were pouring freely, and my arm was moving wildly on its own; I couldn’t control it. The hospital staff began to scramble, and medicine poured into my veins through an IV. Again, the episode stopped as suddenly as it had began, but this time, the hospital staff had seen it, and, they had suspicions of what was going on.

Over the next several hours, I was subjected to test after test, and answers began to come. First, seizure activity was confirmed. Then, we were told about the brain tumors; “several.” Finally, for the first time, we heard the word Neurofibromatosis II.

Although this news was detrimental, all I could do was laugh. I laughed so hard I cried. Were they sure they had the right scans? I couldn’t even pronounce the word; ‘Neurofibromatosis.’ I told the neuro that he had to be wrong; afterall, the EMT had assured me this was only a pinched nerve.

MRI - Tumors

Despite my inability to comprehend what was happening, I was admitted for further observation. My husband never left my side. He made all of the right phone calls, asked all the right questions, and let me fall asleep that night in ignorant bliss, thinking there had to be some sort of mistake.

I was woken up he next morning for a blood draw. The lights were turned on for visibility, and Josh was laying on the hard couch in the room. His eyes were open. We stared at each other until my blood had filled 4 vials, and the phlebotomist left the room.

Then, Josh said said the 5 words that made everything true; “it’s going to be okay.”

That was the moment I realized this was not a dream. It was real. I had Neurofibromatis II; a diagnosis that would change my life. I wasn’t quite sure yet exactly what was going to change, but I knew it was big.

I’ve always believed that although we don’t get to choose what happens to us, we do get to decide how we react to it. These are the moments that define us.

This is my story. And it is just getting started.

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.

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!

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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.