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I have a brain tumor.

6/27/18

Personal

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DATE:

45

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.

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Add Your Comment

COMMENTS +

  1. Amy Brown

    June 27th, 2018 at 8:23 am

    <3 welcome back! I and I am sure hundreds more, are so happy to know you are feeling strong enough again! So many prayers still going out to you and Huey <3 xx

  2. Natalie

    June 27th, 2018 at 9:11 am

    Thank you Amy! You are so kind!

  3. Abby

    June 27th, 2018 at 9:26 am

    Thank you so much for writing this blog post! I was diagnosed with a pituitary adenoma in December of 2014.

  4. Lindsay

    June 27th, 2018 at 9:29 am

    You are amazing! I’m so glad you shared your strength and healing process. My Mom has a brain tumor as a complication to breast cancer and it’s not easy.

  5. Kelsey chapman

    June 27th, 2018 at 9:35 am

    Your transparency is beautiful! Thank you for sharing and letting us in on your journey!!

  6. Sarah Bradshaw

    June 27th, 2018 at 9:36 am

    Love you, friend. Thankful for God’s kindness in preserving your life!! Still praying for you… and on the chronic illness journey with you!

  7. Tyler J. McCall

    June 27th, 2018 at 9:55 am

    You are beyond inspiring, my friend. I’m so grateful to know you and so grateful for the work that you do on a daily basis to make sure we all know what it feels like to be seen and heard and valued.

    Thank you for bravely sharing your journey with us.

  8. Dannie

    June 27th, 2018 at 10:01 am

    Oh, sweet girl. I don’t know if I’ll ever have all the words to express what an impact you’ve had in my life, but let’s just say that this blog post added to it. So proud of you and so grateful to have such a strong friend. <3

  9. Katie Kaplan Leach

    June 27th, 2018 at 10:20 am

    Natalie,
    Oh my heart wants to reach out an hug you. You are incredibly brave! I have a similar diagnose. I was diagnosed with a craniopharyngioma (non-cancerous brain tumor) on my pituitary gland. I was 15 at the time and going through terrible hormonal changes and migraines. I was also diagnosed with diabetes insipidus. My surgery was a little different from yours, I had part of my skull taken out and then wired back in. I am coming up on my 23rd surgery anniversary on July 4th.
    I want to tell you that life after brain surgery is fraught with chaos and fear but also there is a wonderful community (via FB) full of support and love for both diabetes insipidus and pituitary tumors.
    I invite you to join the FB group, Got diabetes insipidus. Also if you haven’t found it yet, the Pituitary Network Association.
    It can take several years for everything to calm down and to get in sync with doctors, medication and to feel like yourself and not just a patient.
    Best of luck on your return to health. Thank you for bravery and for being a pituitary warrior!

  10. Emily

    June 27th, 2018 at 10:21 am

    Thanks for sharing your story. Loved that you can still find it in you to reach out and encourage others, even when dealing with something that seems so personal. Write that book already!

  11. Laura

    June 27th, 2018 at 10:28 am

    Welcome back! We’ve missed you and been praying for you. I am happy that this has provided an opportunity for you to RECEIVE- since you are the one always giving so much. So I hope you take this time to receive all the blessings of friendship, healing, and love that surround you 🙂 xoxox

  12. Kira Hak

    June 27th, 2018 at 10:42 am

    WOW. Talk about inspiring!

  13. Michele

    June 27th, 2018 at 10:47 am

    Forever grateful for your heart, your kindness, your vision and your perseverance. Thank you so much for opening up about your journey & for being you. Our lives are so much richer because you are in them. ❤️ PS you can road trip with us any day. I’m forever having to stop because I try and drink so much for my kidney health. Only have one so gotta take care it!

  14. The Worthens

    June 27th, 2018 at 10:50 am

    Thank you for opening up and sharing this! You are such a blessing to so many (including us!) and we are so thankful that the doctors were able to

  15. The Worthens

    June 27th, 2018 at 10:50 am

    Thank you for opening up and sharing this! You are such a blessing to so many (including us!) and we are so thankful that the doctors were able to remove the tumor successfully.

  16. Erin

    June 27th, 2018 at 10:54 am

    Natalie – this story is inspiring, I’m so glad you decided to share it! Your realness will impact more people than you know 🙂

  17. Tony Wodarck

    June 27th, 2018 at 11:01 am

    Love you, thanks for sharing all of this. <3 You're amazing. Grateful for everything you do.

  18. Jessica Carrillo

    June 27th, 2018 at 11:03 am

    You are such an incredible person Natalie. Thank you for sharing your personal journey with us. I feel lucky to know you and call you a friend.

    XO,
    JESS

  19. Elayne Sawaya

    June 27th, 2018 at 11:05 am

    Thanks so much Natalie for sharing your story
    I appreciate your feelings and can only imagine how hard the recovery is. One of my dearest friends had a benign brain tumor and she lost her career in TV production. She has come back and is now working in events. She struggled with speech and the corporate overlords were not warm and fuzzy. We need to be there for each other.

  20. Emma Roberts

    June 27th, 2018 at 11:07 am

    Thank you for sharing such an intensely personal experience. Your bravery and optimism shines through your telling of your story. You have a unique perspective on life and I’m grateful to have gotten to read this.

  21. Karly

    June 27th, 2018 at 11:12 am

    You are such an inspiration, Natalie. Thank you for sharing your story and for being such an encouragement to others. Your impact is bigger than you will ever really know!

  22. Tori

    June 27th, 2018 at 11:20 am

    Gah, this brought tears to my eyes. Thank you for being brave enough to share your story. Get your head up, gorgeous.

  23. Martha

    June 27th, 2018 at 11:20 am

    “Healing also reveals your strength”, and you are so strong, Natalie. I’m so glad to see that you’re never alone in your fight. And by sharing your story, you’re also supporting others in their own fights. I know writing about this wasn’t easy, but I’m so proud of you for doing it. Counting the days to get my hands on your book.

  24. Rebecca Vann

    June 27th, 2018 at 11:41 am

    Wow!!!! You are so amazing!!!! So beyond proud of you!!! Prayers coming your way!!

  25. Kristy

    June 27th, 2018 at 11:53 am

    Thanks for sharing your story. I wish you all the best in your continued recovery! You are brave for opening up, being vulnerable makes us stronger and connected. 🙂

  26. Jade

    June 27th, 2018 at 11:57 am

    Welcome Back, Natalie you have been missed. The struggles of life are real and I’m so glad that you are the road to recovery. I was so happy to see your email. Your words, your story is a comfort I nearly forgot that I missed. Thank you, for opening up. And congrats for finding your strength again to move forward. I can’t wait to see more. ♡

  27. Cathryn Peters

    June 27th, 2018 at 12:03 pm

    Natalie your post today really struck a cord with me, because like you, I’ve been MIA from blog posting, but it’s been over a year now. It’s heartening to hear how you’ve overcome your dire medical situation and have resumed your life with zest! My absence stems from the passing of my husband five years ago and my subsequent loss of ambition and drive. Also I’m at a quandary trying to figure out how to really live fully in the next chapters of my life, what is it that I really want to do? My subscriber list has suffered and I felt badly that I hadn’t been reaching out to them in such a long time but now, after hearing your story I realize that my troubles are not really so insurmountable after all. I need to just jump back in, give a little reason for my absence and go on with sharing what I so dearly love, chair caning, basketweaving and helping other weavers to succeed!

  28. Sonia Hernandez

    June 27th, 2018 at 12:10 pm

    Natalie,

    You are wonderfully blessed by our almighty creator, wishing you nothing but the best and continued success. Thank you for being so brave to tell your story.

    Lots of Hugs, Your Maryland friend,
    Sonia Hernandez
    Clarity and Class, Events and Design, LLC

  29. Mimi

    June 27th, 2018 at 12:18 pm

    You are a very special young woman, Nat… I treasure the lifetime I have known you and learned from you and loved you.

  30. Mandi

    June 27th, 2018 at 12:47 pm

    Thank you so much for sharing! I had a cancer scare over the holidays and into the winter of this year. Fortunately, I was diagnosed with endometriosis and my blood levels went back to normal post-surgery this April. Following along with your journey has helped me not feel so isolated in my struggles. I, too chose not to share a lot in the beginning because I didn’t want it to affect potential bookings. I am so happy that everything went as well as it did for you and I’m excited to continue following your journey online! lots of love!

  31. Michelle

    June 27th, 2018 at 1:04 pm

    I too had a benign brain tumor removed, so I sat here thinking about my journey while reading about yours. There are so many things the Drs can’t really prepare you for, like hiccups in your memory, or sometimes not being able to pull up simple words. Your brain heals, but it’s slow, and sometimes frustrating. I’m blessed like you to have a great support system, give yourself permission to shut everything out once in awhile. Thank you for sharing your story.

  32. Christina Scalera

    June 27th, 2018 at 1:29 pm

    Love you for this and for being so strong. The part that felt the most “Natalie?” You getting on a plane without being able to see. SMH. So you. Laughing and crying at the same time there. I am always here to support you however I can, this has been a beautiful/awful journey you’re on but you’re not alone <3

  33. Shari Premo

    June 27th, 2018 at 1:58 pm

    Natalie, you are truly an inspiration! I am so thankful to call you a friend! Your story is nothing short of incredible and resonating!
    I know that sharing the intricacies of our lives and allowing ourselves to be vulnerable is one of the hardest things to share and face and I am grateful that you have shared yours!

  34. Angela Schulten

    June 27th, 2018 at 2:03 pm

    Hi Natalie, thank you for sharing with us your most private situation. You touched my heart! I pray for you and hope and wish that your recovery goes well and god guides you to dark days. I really enjoy reading your blog and and encouragement to all us creatives. Thank you so much! I send you lots of love and a big hug from switzerland. Angela

  35. Lester

    June 27th, 2018 at 2:06 pm

    With you, Nat. You are so courageous for going through this and sharing it so intimately for the sake of acknowledging those who are also struggling and emphasizing this (which I deem quote of the year) >> “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.” <3

  36. Jason Rodgers

    June 27th, 2018 at 2:19 pm

    Welcome back, glad you’re feeling positive and I’ll look forward to your emails ….again

  37. Marvin

    June 27th, 2018 at 3:07 pm

    Love how open you are. I love how you didnt let it stop you from being you and taking those big steps. Honeybook & RTS is such an amazing community cant thank you enough for all your hard work. you are truly an inspiration. Wish you the best as the recovery continues.

  38. Jodi McKenna

    June 27th, 2018 at 3:22 pm

    Thank you so so so much for sharing your journey. I completely understand not sharing. We kept my husband’s health issues quiet for years. Only recently has he begun to share because healing is a process— a journey that lasts different lengths. But there comes a point when it’s time to share and you waited for that time. I’ll be praying for you! — jodi

  39. Ann Zgorski

    June 27th, 2018 at 5:04 pm

    OMG Natalie! Tears just poured from my eyes when I read your post! All of your brides you photographed (including my daughter) must all be in shock reading this! You will always be a special person in our lives, and wish and pray for all the best for you going forward! Thank you for sharing your story! You are truly an amazing and beautiful human being!
    PS – My daughter Emily was the bride with the two disabled siblings married at St Mark. Our son Ben passed away the following October, and we are so grateful to have one of our last family photographs taken by you! Take car!

  40. Susan Feder

    June 27th, 2018 at 7:43 pm

    I suffered a TBI 7 years ago and I still have not opened up about it. What you wrote made me realize that I need too. I lost friends and made new friends. But still always feel broken inside. I treasure your honesty and courage.

  41. Lisa Digiglio

    June 28th, 2018 at 5:29 am

    Welcome back Natalie! you are so strong

  42. Paula

    June 28th, 2018 at 12:42 pm

    Wow! Beautifully written. Thank you for sharing this with us.

  43. Liz B

    June 28th, 2018 at 8:34 pm

    This was really moving. I was diagnosed with vestibular migraines about 6 months ago. I’m in awe of what you’ve gone through, and even more so in awe of your mindset coming out on the other side of such a traumatic event (even though you still deal with health issues). Thanks for sharing your struggles and being so honest – as you said, everybody struggles and you never know what someone is going through. Thanks <3

  44. Anette

    June 29th, 2018 at 12:55 pm

    Welcome back! Thank you for sharing and letting us in on your journey ❤️ Lots of love!

    – Anette

  45. Amy

    July 2nd, 2018 at 8:29 pm

    Thank you for taking the time and mustering the courage to share your story. I am so happy that you’ve opened up and been real and raw with this space, I’m sure it will help in the healing process! <3
    You're a brave, stunning, and strong woman!

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