When I announced my surgery back in October, I was anxious to open up about my diagnosis. As an eternal optimist who desires to be a positive voice in the world—sharing tough news isn’t something that I’m used to doing.
That might explain why it has taken me seven months to write a blog post about my brain tumor and why I am terrified to hit publish. I think that there was is still a part of me, deep down, that trembles at the thought of being this vulnerable with the world.
However, if you have taught me anything… it is to trust in the power of community and step forward honestly, boldly, and with purpose.
If you are reading this, I believe that there is a reason why our paths have crossed and there is a reason you landed on my blog at this particular moment. I pray that my words bring you hope, comfort, a sense of peace, and remind you that you are never alone.
An Unexpected Diagnosis
I was twenty-two and living in Maryland. I had booked nearly thirty weddings that year and was planning a wedding of my own—finally marrying my high school sweetheart after seven years of dating. I had just graduated from my dream school and on the outside my life looked like it was going perfectly.
However, behind the scenes I was about to embark on a very scary journey. I was struggling to understand the cause of ongoing symptoms (headaches, significant weight fluctuations, hormonal changes, depression) and a single blood test revealed that my prolactin and estrogen levels were abnormally high.
That led to a variety of endocrine tests and ultimately—a brain MRI.
I remember calling our wedding photographers, Katelyn and Michael, as they were in the airport on their way home to cancel our engagement session the week of my MRI. I opened up with them on the phone about our search for answers and Katelyn prayed with me from thousands of miles away. I had never experienced fear like the fear I felt in the days leading up to that test. I think deep down, I knew that something had been wrong for a long time and I was afraid to uncover the truth.
As the scan started, the radiologist joked with me about how they didn’t expect to find anything—a “precaution” was what he called it. I nodded. After the procedure, I was escorted by a kind nurse to a small room with my mom and Huey. The doctor returned and I knew right away that my fears had been confirmed.
He pulled up an image of a brain on the computer, looked at us and said, “this is what a normal brain should look like.” He pointed to certain structures I remembered studying in school. The doctor took a moment to point out the pituitary gland sitting behind the optic chiasm—the x-shaped intersection of the optic nerves where all visual signals flow towards the back of the brain.
Then the doctor switched to a second image of a brain and pointed saying, “this is what your brain looks like.” On the screen, right in the center, where my tiny little pituitary gland should have been—there was a tumor. A benign mass nearly pressing against my optic chiasm.
I could feel my hands begin to shake as tears welled up in my eyes. I studied the brain and knew that any pressure on optic nerves can cause visual changes, even temporary blindness… How could I photograph weddings if I started to lose my vision? What would this mean for me in the long run? Would I need surgery or radiation?
In a single moment, I went from worrying about silly things, the number of likes on my latest Instagram post… whether I should buy that dress I had been eyeing in Target… to worrying about the rest of my life. It was a wake up call, friends… and it was just the beginning!
I have a benign brain tumor.
For five years, I kept my diagnosis private. Only our closest friends and family members who needed to know about my brain tumor knew.
A question that I get frequently is—why did you keep it private? I think it was a combination of things.
A big part of me was afraid that if I opened up about my diagnosis—I would become the ‘photographer with a brain tumor’ and people would judge me before taking time to truly know me. After all, I am not my diagnosis (and neither are you). I wanted to be known for my art, my values, and my impact. I was so afraid of trading my audience’s respect for their pity.
Deep down, I was also afraid of losing clients. I felt like sharing about such a scary thing would be damaging for a wedding photographer. I remember thinking: who would want to hire someone that could go blind without warning?
It wasn’t always an easy thing to navigate privately and as time went on, there were moments that made me question my choice to keep my diagnosis a secret.
For example, the first time I experienced a visual migraine—I lost the ability to see in the Phoenix airport after speaking at a conference. I called my mom, afraid that my tumor had finally grown too large—terrified that I was losing my vision. My sweet friend Lauren held my hand as I cried on the flight back home. Once we landed, I was driven straight to the Emergency room where they treated my migraine and suggested that we finally send my MRI to a neurosurgeon for further examination.
Moving Forward With Surgery
Back in October, I went in for a consult with the neurosurgery team at UCSF after my latest MRI revealed growth of my tumor. It was unanimously suggested by the surgeons and neuroendocrinologists that we schedule surgery to give me the best quality of life in the longterm.
A few weeks after that doctor’s appointment—my husband and I made the decision to move forward with surgery and broke the news to our family, friends, and colleagues. This was one of the hardest parts of the process for me. I’ve never cried so hard with so many people that I love in such a short period of time. It felt like a marathon of tearful phone calls.
Shortly thereafter, we shared with the community and experienced the most incredible outpouring of support imaginable. My industry friends, former clients, and mentors showed up for me in ways I never imagined. I am so grateful for every comment, email, and card that was sent my way.
I look back on that season and can still feel the fear… however, I also see the ways in which God carried me through and equipped the people around me to stay hopeful in those moments of uncertainty.
I went into UCSF on November 13th and had a successful surgery. I was grateful that the doctors could remove my tumor transsphenoidally—by drilling a hole in my skull through the sphenoid bone and entering through the sphenoidal sinus cavity. (Don’t google this if you are squeamish—I still cannot look at pictures or video as it freaks me out too much!) It is less invasive than a craniotomy and it means that I don’t have a visible scar on my scalp.
My surgery ran a little longer than anticipated, but otherwise was very uneventful. I remember arriving at the hospital, heading to the pre-op area, nervously holding Huey’s hand… and then waking up with the most unbearable sensation of thirst that I have ever felt in my life.
Recovery was is hard
The days that followed are hazy, however I am so grateful to the nurse that quickly diagnosed my diabetes insipidus and administered DDVAP spray when I began struggling with thirst issues. We had to return to the emergency room several times after being discharged due to a sodium and potassium rollercoaster ride known as an electrolyte imbalance, but I quickly got the hang of my DDVAP medication and those scary moments subsided.
Most cases of water diabetes resolve after a couple of days, however I’m one of the patients who didn’t fully recover. Thankfully, my symptoms are far better than they were in the days immediately after my surgery and having access to electrolyes helps.
What is it like? Having water diabetes feels like being crazy thirsty all the time and having to pee every hour. It isn’t glamorous and I’m officially the worst person you could take with you on a road trip… but it is manageable!
I also have some minor trouble with inflammation, however massive changes in my diet are helping to combat that. I’ve decreased the amount of processed foods in my diet, increased plants + plant based proteins, and added turmeric to my supplements. If you see me eating a lot of kale, broccoli, and ginger… now you know why!
Can I get real for a second?
Recovery is hard. It’s slow and at times painful. I know that many of you have experienced the struggle of bouncing back after a traumatic event in your life!
Here is the truth: Healing brings with it a rollercoaster of emotions. It forces you rely on others. It strips you of your independence. It challenges you to grow as a human being—teaching you to embrace your own brokenness and give yourself grace amidst the struggle.
Healing also reveals your strength. It pushes you beyond what is comfortable and shows you just how courageous you can be. It showcases selflessness, empathy, and compassion in others. It reminds you of what truly matters in your life and it changes you forever.
This experience has taught me that when we walk through uncertain times we cannot control what is happening to us… but we can control how we react to it. We can choose love, hope, gratitude, and grace. We can choose to have faith. We can look for silver linings. We can embrace hardship with positivity and prayer.
I also learned that recovery cannot be rushed. You cannot compare your come back to anyone else’s and there is no prize for pushing yourself too hard. These things take time and you have to give yourself grace in the process.
A Lesson in Kindness
One of the biggest lessons I took away from this experience was a reminder that everyone we meet is fighting a tough battle. When I opened up about my diagnosis, I was overwhelmed by the amount of people who shared that they were struggling with their own hardships behind the scenes.
It reminded me that we are all walking through different struggles in our lives. Many times, our hardships get hidden behind the curated images and highlight reels that we share on social media. Our fears, our struggles, get tucked away into the corners of our hearts as we put on a brave face as we step out into the world each morning. It can be easy to forget that we are not alone.
Let’s be kinder to one another. Let’s check in on one another.
Let’s remember that behind our smiling profile pictures are real people facing genuine challenges.
Thank you from the bottom of my heart.
Thank you for your kindness, thoughts, prayers, and unwavering support. Thank you for the home cooked meals, cards from around the country, and home visits in the weeks after surgery. Thank you for being a part of this community and for reminding me, day after day, that we’re in this together. I’m grateful for you.
I believe that this experience has certainly made me a kinder, more empathetic person. I’ve developed an admiration for the chronic illness warriors in my life and seen the sheer determination that many of my friends have to muster on a daily basis to do the things that so many others take for granted. I want to especially thank them for their support… they inspire me more than they will ever know.