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I became a nurse in 2006. I was an LPN and committed to lifelong learning, so I’ve been a nurse for 19 years. I started in pediatrics and with chronically acute peds. I ended up getting my RN, and then my bachelor’s degree, and ultimately my master’s.
I’m a certified nurse executive, so the bulk of my career in the last decade has been in nurse management and leadership. I worked for the Centers for Medicaid and Medicare as a nurse consultant, but my clinical skill set was in the ER.
I actually met my husband, Klarens, when I was on a travel nurse assignment in North Carolina. We met at the Barnes & Noble bookstore, set up a date, went out to dinner, and the rest was history. We got married in 2012.
When we met, he was serving in the Marine Corps and got out in 2012. However, he was commissioned, which means he went back into the Army as an officer.
A Nonstop Headache
When I was diagnosed in December 2023, we were living in the middle of nowhere — the National Training Center in Fort Irwin, California. It’s in the Mojave Desert, so it’s a very remote rural area.
I happened to be working for the Defense Health Agency. At the time, I was a director with lead case management over the area, which included Nevada and Southern California.
I had been having this headache for 3-4 weeks that had been unrelenting and never eased up. The pain would radiate into my tooth and behind my ear. I attributed it to having twins or my tooth.
I didn’t want to go to the hospital there because I worked there, but one day it got so bad that I couldn’t do it anymore. I wasn’t there an hour before the CT results came. They told me I had a lot of cerebral swelling, and they had to transfer me to another hospital. Because the winds were too bad for a helicopter, I went via an ambulance for the two-hour drive.
Thankfully, the military community supported us so much, which was so hard for me to be in that position and need that care, as I’m such a nurturer and caregiver as a nurse. I really had to set aside my pride and just be grateful and thankful that our military community stepped up.
Advocating for Myself
After waiting three days for an MRI and the next steps, I put on my ER nurse hat and requested to speak with the chief nursing officer and the director of clinical quality. After our conversation, I had a different experience.
When the neurosurgeon came by, she told me that surgically, she wasn’t comfortable operating on my tumor, which I really appreciated in hindsight. I was upset at first, but I really appreciated the level of authenticity. She said that a surgical removal would make me blind and unable to close my mouth due to the tumor’s location. She wanted me to go through radiation, and the radiation oncologist was vehemently against that. He felt like a surgical incision was first.
Stephanie with Dr. Patel
When I heard those conflicting opinions, I jumped into action to advocate for myself because I believe it’s really important to have a rapport with your doctor and be at peace. It’s okay to get second opinions. I encourage people to be engaged and not let that first opinion be the end.
I messaged my gynecologist at UCLA and asked her to call me. She did, and I said, “All hell has broken loose. I just got diagnosed with a brain tumor. I need you to tell me which neurosurgeon is the best. I’m young, and I have to live for my kids.”
She put in a referral for Dr. Patel at UCLA, and he called me right back. After that phone call with him and just his reassurance and confidence, I felt a sense of calm. Yes, I was emotional, but I felt so much peace after because it had only been a couple of hours since being told I would become blind if I had surgery. It was such a turn of emotions.
We scheduled surgery for January 3, 2024.
Surgery Day
My then 24-year-old son flew to California the day before my surgery was scheduled. When I saw him come out of LAX airport, I immediately knew something was wrong. He played college football and is 6’4”, 310 pounds. He wasn’t hungry, but he kept complaining about being thirsty.
I said we were going straight to the UCLA emergency department. I told the ER team that they needed to rule out diabetic ketoacidosis (DKA). He got admitted to the hospital because they confirmed that diagnosis.
I spent that night at his hospital bedside, not sleeping, knowing I was going into surgery. My feet were on the side of the ICU bed. I was praying. At 4 a.m., his lab results came back, and they were no longer in the red. I was having surgery.
I had surgery and was given a bed on the neuro floor. My husband went back and forth between our rooms on separate floors of the hospital while we both recovered.
My husband got a room at the Fisher House, a nonprofit that provides resources to military and veteran families while their loved ones receive care nearby, while I was recovering from surgery.
Recovering From Surgery
When I was discharged from the hospital, my speech was really bad, and I was very detached. I snapped at people and unleashed my anger at those who hurt my feelings. I did have a lot of anger because I was used to being super independent. It was hard to be in a position with the brain swelling and changes, where I needed help. In the process, a lot of relationships with my family were impacted.
I was very unbalanced with walking because I was very weak. My husband tried to prevent me from falling. Organizing my thoughts in a succinct manner and finding words to talk to were challenging. I was in speech and physical therapy.
When people look at me now, they assume I’m okay, but I have severe cognitive impairment according to my neuropsychologist. Adjusting to this new normal is very difficult. Even what used to be simple organizing and planning for a meeting is now challenging, and it can be embarrassing when you’re used to juggling all the things.
I’ve been in the corporate world at the director level, and I thought that I would have a career trajectory in executive management — that was my goal. Now, when I get overwhelmed, my difficulties return. I begin to stutter, and I am unable to find words because of aphasia.
Different things trigger that, such as being in crowds, hearing loud noises, background noises, and having too many things thrown at me.
I now have to read things multiple times instead of just glancing over them and moving on. I told my husband, “I went through all this school. I don’t remember note-taking strategy or know where to start with all those things that were normal.” Those executive-level skills are gone for me.
Life After Surgery
Four months after surgery, my family moved to Colorado Springs. It was challenging to move, so my husband reached out to Wish Upon a Wedding to request a vow renewal celebration to try to pick up my spirits, as we had not been able to have our “dream” wedding when we first got married.
They accepted his application. I had a hard time expressing what I wanted, so the coordinator dug deep into my social media accounts to see who I was. She then created a beautiful celebration on our 12-year anniversary. It was perfect.
My husband has been my rock throughout this whole experience. He’s been patient and forgiving. I don’t think many people understand the impact of a brain tumor. There’s significant swelling, and it’s compressed in that area, which elicits a lot of emotions.
For caregivers, I think remembering who that person was before their craniotomy is really significant, and not taking it personally during the experience.
Looking Forward
The improvement that I made over 15 months is amazing. I’m planning to take two years to focus on my healing, but it’s hard because I’ve always worked. Unfortunately, in our society, we tie that to identity, so it’s hard for me to be in a room and not have those titles, but those things come and go.
Yes, my meningioma was benign, but it still has a significant impact on my life. I think that’s the important part for people to understand. Yes, it was benign, but post-craniotomy, it’s a new you. It’s an opportunity to pick up the pieces, discover a new you, and find gratitude in that journey.
I’m trying to devise new strategies, engage in therapy, and adapt to live with happiness and joy.
