Brain Tumors Are … Terrible, Funny, Exhausting, & Inspiring.

I recently celebrated my 2 year anniversary.  No, not our wedding anniversary, but one that affected my life, marriage, others’ lives, and my outlook on life much more.  On February 3, 2017 I had a brain tumor removed.  This is now a major benchmark in my life; my life before surgery and my life since.

My first scans – tumor was about the size of an egg.

I had found out 3 weeks before surgery that I even had a brain tumor. My symptoms were very different from what most people assume. My right hand was going numb periodically and I would have pulsing through my forearm. Come to find out these were localized seizures.  The week between learning I had a brain tumor and meeting with my surgeon was the worst. I told very few people because I didn’t have answers to all their questions. I didn’t have answers to my own questions.  Some were; when does it come out, does it need to come out, how long has it been there, how are my family and friends going to handle this, what other parts of my life is it effecting that I’m not even cognizant of, why me, how long is recovery, what about my hair, how do I get back to normal after this and do I even know what normal is if I’ve been living with this for a long time?  Meeting with my surgeon at the University of Iowa Hospitals answered some of these questions. Some are still being answered.

Leading up to surgery I didn’t ask my doctors many questions about the surgery. I didn’t Google anything. Getting anxious and freaked out about the medical aspect of it wasn’t going to change their plan or make me feel any better. So I tried to just be me, made stupid (sometimes inappropriate) jokes, played volleyball just a few nights before, and tried to stay busy so I wasn’t in my own head.

My CT scan that shows my burr holes, cut lines and titanium clips.

The day of surgery is a blur of weird emotions and fragments of memories for me. I remember being fairly calm through most of the pre-op and then the anesthesiologist went through the possible side effects, said death, and I lost my shit. Obviously I knew that was a possibility, they’re cutting my head open for God’s sake, but no one had actually said it and I hadn’t dared say it aloud. I got it together and away we went. I remember thinking I couldn’t make a big deal of saying goodbye to Josh and my parents or I would lose it all over again and that wouldn’t be good for anyone. Once I was with the doctors, nurses and what seemed like 30 other people in the operating room I was really calm. Can’t explain it, I just did what they said and wasn’t worried at all.

Then I woke up. Slowly things started to make sense and I got to see my family. At some point I realized I couldn’t move my right arm. They had said that my hand/arm would be sluggish after surgery so I had been practicing doing things left handed, but I couldn’t move it at all. This was not in the play book. But to be honest I was so doped up on pain meds that I didn’t give it much thought.

Few days after surgery and my bandages came off.

The next 4 days I was in the hospital and my world revolved around sleep. Apparently my family had it down how long after I ate, took a lap around the unit or got a bath that I would fall asleep again. Thank God for my family and friends that were there – I truly can’t imagine how I would have made it through this experience without them. They were (and still are) my shoulders to cry on, my cheerleaders, my own comedy club and my rocks.

Going home was a relief but also a whole new set of challenges. Josh managed my meds like a pro, helped me with EVERY little thing at first, and pushed me to do more myself each day. This experience has showed me how strong my husband is and how strong our relationship is. This was a tough situation for anyone and he had my back, no question. He has said it also opened his eyes to what all I do for him each day that he can sometimes take for granted. We learned more about each other and our future during this time than the almost 3 years of marriage before. 

After Josh buzzed the rest of my hair off, on Valentines Day of all days. This is my sister and me on Feb. 15th

I blinked and now 2 years have passed. There have been lots of MRIs, doctor appointments, another brief hospital stay, physical therapy, steps back and leaps forward since then. My right hand still isn’t 100% but my fingers work and I’m proudly ambidextrous. Most importantly there has been 730+ days of life since then! I know now that a full life (whatever that means to each of us) is the best life.

My progression of scans where you can see the tumor cavity getting smaller.

I have learned about meningioma (my kind of tumor), that I can taste it when things are injected in my IV, pain killers make me cry for no good reason, hospital nurses can make or break your day, and saying thank you will never seem good enough to show your gratitude to someone who had your skull open.  But what gift do you get a brain surgeon and his team??

I have learned that although I may not have a large circle of friends, the ones I have are my family – not just friends – and my entire family is amazing! Yes, we crack jokes too soon (I was told while still at the hospital that having a hole in my head is no excuse for pretty much anything). Yes, we take over the family waiting room and may have injured a lamp. Yes, my father will sleep anywhere at any time. Yes, they all make me feel proud, embarrassed and loved every day.

One of my many hair styles as it grows back.

I know everyone says that after experiences like this you get a greater appreciation for life, and you do. But more so you have a greater appreciation for the people and the things that bring you joy. I appreciate that I have healed enough to play volleyball, drive to church, take pottery classes, have a drink to celebrate a birthday, play catch with my nephew, cook for my best friends, and read a book. These are all things that I could not do for weeks, months, or even a year after surgery. The thought of losing these things forever was more painful than recovery itself. Thank God the list of things I am still working towards being able to do is short compared to what I can do.

I don’t believe God gave me a tumor but I do believe He helped us all in different ways to navigate the situation. That calm I felt in the operating room was Him, no question in my mind. My family being able to wait patiently during my 9 hour surgery was Him. The ability to find the humor at a stressful time is Him. The natural ability of my doctors is Him. My determination to be able to carry a glass of water with my right hand, despite having spilled countless before was Him (and now I can do this without even thinking about it). God didn’t give me my tumor but He knew we could make it through.

A few things I would like to pass along: Listen to your body, if you’re having weird symptoms go see a professional. Listen to your mom, if she’s like mine and kept telling me to see a doctor. Listen to your family when they say I love you, let that etch itself in your soul, and say it back. Listen in church to how much God loves you and how He will do everything He can to give you peace. Listen to your own wants and needs and fulfill them to fill your life.

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Until next time!


Me about 19 months after surgery.

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