The “Good” Kind of Brain Tumor

As promised in my “About Me” introduction, I’m circling back to a topic that may have prompted a few questions.  So, from a place of profound gratitude, here’s my story . . .

Let me begin by saying that I am incredibly fortunate.  I am acutely aware that there are so many people whose diagnoses and prognoses are far worse. Many people find themselves with tragic health circumstances, and while mine was frightening and life-changing, it was nowhere near tragic.  I’m sharing it because it was one of the most significant periods of my life that changed me, led me in new directions, and became a big part of my personal “why”. 

In January 2017, at the age of 47, I was diagnosed with a brain tumor.  It was what the medical world calls an “incidental finding,” which basically means I went into the ER for one condition, and in trying to find the cause of it, they found something else.  The doctor likened it to someone who comes to the ER after falling off a ladder or being in a car accident, then learns they have a brain tumor.

In my case, the condition that brought me to the ER was extreme vertigo.  Out of the blue, I was hit with a sudden onset of violent vertigo.  Like the flip of a switch, I went from being completely normal to being unable to tell which way was up.  I couldn’t stand or walk without falling and vomiting.  In the ER, we learned through a CT scan that there was a mass in my brain. We also learned that the mass was not causing my debilitating vertigo.  The tumor was in my left frontal lobe (nowhere near the part of my brain that impacts balance and equilibrium).  Eventually, we learned that my vertigo was caused by something called Vestibular Neuritis (an inflammation of the vestibular nerve – which controls equilibrium).  The dizziness would eventually, s-l-o-w-l-y heal on its own over the course of the next 3 months.

 After finding the tumor, I had a series of MRIs and was blessed to be referred to one of the best Neurosurgeons in the country.  It was a terrifying and humbling time, and to be perfectly honest, there are portions of that time I don’t fully remember because I was completely overwhelmed.  Despite that, I knew how fortunate I was to have access to excellent medical care.  Physically, I felt horrible from the ongoing, debilitating vertigo, and my body and mind were in “survival mode.” 

I was mostly terrified for our kids. I didn’t want to burden them with this huge thing. I didn’t want to interrupt their flourishing lives with something this scary, this ugly. Our daughter was in India with school friends, and I couldn’t imagine giving her this news while she was so far away.  She was on a once-in-a-lifetime adventure.  How could I ruin that?  So, I completely avoided telling her until she returned to college in Boston. Until we knew what we were dealing with, we only shared the bare minimum with our son.  After all, he was at home with us, and he saw how sick I was.  So, we basically told him Mom was sick, and we were trying to learn more.  

Within a few days of finding it, we learned that in the realm of brain tumors, I was incredibly lucky.  There are many types of brain tumors and, while they’re all scary, I had the “good kind”.  It was slow-growing, non-invasive, and likely benign.  However, it was also quite large, about the size of a lemon.  (Isn’t it strange how we always compare tumors to fruit?)  Anyway, because of its size and potential to cause a myriad of problems, it would have to be removed.  

To this day, I am humbled by that statement: “I was going to be okay.”

 Interestingly, as far as the potential side-effects of my tumor, I was asymptomatic. In fact, I have the vertigo to thank for finding the tumor before it caused something catastrophic – like a seizure while driving or worse.   My mindset regarding my awful vertigo was forced to change.  Yes, it was horrible and debilitating, AND it was, quite possibly, the thing that saved my life. I learned to accept and embrace the fact that two seemingly opposite things can be true at the same time. Part of my new “why” became profound gratitude.

My Neurosurgeon assured me that while, yes, my tumor would have to be removed, it didn’t have to happen right away.  He said we could watch it, with MRI’s (first monthly, then every 3 months), and “get to know it”.  He assessed that it wouldn’t start to have the potential to cause a risk to me for 3-5 years, but if I wanted it taken out the next day, we could do that.  The choice was mine. I was still in such terrible shape from the vertigo (unable to walk without assistance). I knew that for my peace of mind I wanted the vertigo resolved before I considered brain surgery.  Funny sidenote –  I asked my doctor what specific symptoms I should look out for with my tumor, and he said, “You may have some mood swings and mild personality changes.”  My response to that was, “Dr, I’m 47 years old.  By your description every woman I know has a brain tumor”.

Two weeks after my diagnosis, Emily returned from India.  We knew enough about my condition to be able to reassure ourselves and our kids that, while this wasn’t ideal, it was manageable.  I was going to be okay.  To this day, I am humbled by that statement: “I was going to be okay.”  As frightening as the idea of brain surgery was, I was so incredibly blessed . . . lucky . . . fortunate . . . (insert all the good adjectives here!).  It could have been So. Much. Worse.  Sadly, I have two friends who were diagnosed with brain tumors within a year of me, and theirs were not “the good kind”.  One is no longer with us; the other has been fighting bravely for several years.  So, like I said, I was, and continue to be humbled.  Part of my new “why” became humility.

I learned to accept and embrace the fact that two seemingly opposite things can be true at the same time.

Over the next 3 months, my vertigo improved v-e-r-y slowly.  It was a really long process, during which I was truly debilitated and often terrified that it would never go away.  I relied on family and friends to help me with carpooling, grocery shopping, and keeping our household afloat.  I am deeply grateful to have had such a generous and loving community propping me up.  Again . . . gratitude and humility. 

Once the vertigo finally subsided, I felt strongly compelled to focus on my health.  I was continuing to get regular MRIs that showed that my tumor was growing, as expected, very slowly.  I recognized that since I would be facing major brain surgery, I had the opportunity to get myself into the best possible shape.  After 3 full months of very limited activity, I wanted to get my body strong so I would have best chance for a good surgical outcome and smooth recovery.  So many people face major surgery without the gift of time.  I had time. And I was going to make the most of it.  Another part of my new“why” . . . seizing control over the things that I could . . . empowerment.

I focused on eating a very clean, healthy diet and increasing my stamina and strength.  I went from not being able to go up and down stairs due to dizziness and instability to being able to walk the first mile, then two. . . and then six.  I became a “gym rat”, attending regular strength, HIIT, Pilates, and yoga classes, and got myself in the best shape of my life.  Throughout this process, my focus was on not just surviving brain surgery – I wanted to “crush it.”  A new part of my “why” became stepping into my strength.

It was also during this time that I was pursuing my nursing degree.  The best way I can describe it was that I was starving to challenge myself.  I was craving to do something that would have an impact. I hadn’t been a student since I earned my bachelor’s in education in 1990.  I dove into taking my courses and pursued my educational goals with a fierceness I had never experienced before.  One of the benefits in going back to school as a mid-life adult is that we have the self-discipline and time management skills to apply to our studies.  I found my subjects fascinating, and I tapped into a love of learning I didn’t have when I was 18.  It was incredibly fulfilling and empowering. 

So many people face major surgery without the gift of time.  I had time. And I was going to make the most of it.  Another part of my new“why” . . . seizing control over the things that I could . . . empowerment.

Flash forward to the spring of 2020, when we were all hit with the Covid Pandemic.  My neurosurgeon believed that we were approaching the point that the tumor needed to be removed.  I had been fortunate to have had all that time to focus on nursing school and getting strong and healthy.  As much as I hated the idea of having brain surgery during the pandemic, I knew I needed to go ahead and schedule it.  Because of the risks that contracting COVID could mean to my surgery, I had to treat myself like I was immunocompromised for 6 weeks before and 6 weeks after the surgery.  Everyone was already socially isolating, but we had to kick it up a notch and be extremely cautious.

So, on June 25, 2020, I had brain surgery to remove my tumor.  My surgeon and his incredible team were able to get all of the tumor without causing any significant bleeding or damage. Post-op, I spent 2 days in the ICU and 3 days on a regular medical/surgical unit.  They had to shave the whole front half of my head going back about 5 inches, and I had an incision from ear to ear like a headband.  They also left these mysterious thin pieces of hair, like tendrils, on either side of my forehead (Not the best look!). I told my neurosurgeon and the plastic surgeon they shouldn’t quit their day-jobs to become hair stylists.  But . . .  the relief was truly indescribable!  This big thing that had been in my head, literally and figuratively, for three years was gone, and I was safe.

Once I came home from the hospital, I needed a lot of rest, but recovered remarkably well. I am certain that the time and energy that I put into my health, fitness, and strength before my surgery had a huge impact on my recovery.  My doctor said my recovery would take about 6 weeks, and he was spot on.  Thankfully, my pain was minimal. I was extremely tired and my brain was easily overwhelmed and overstimulated.  I felt very “floaty” and disconnected from my body.  I would cry at the drop of a hat, mainly if my brain felt overstimulated.  But this was all a normal part of my brain healing from surgical trauma.

Day by day, I felt stronger and more like myself.  My doctor wanted me to walk several times a day, and initially I could only make it, with Gareth or my mom supporting me, to the end of our cul-de-sac and back.  But every day, I could go a bit further, and by the end of 6 weeks, I could walk 3 miles.  I was advised to take the semester off from Nursing School.  That was a really hard decision, but it was definitely the right thing to do.  Beyond regaining my physical stamina, I had to rebuild my brain’s ability to handle environmental stimulation, process information quickly, and handle the stress of a rigorous course load and twice weekly 12-hour clinical shifts in the hospital.  The first 6 months after the surgery, I had multiple MRIs and follow-up visits.  I wore head scarves for a year as my hair slowly grew back. 

Now, I continue to get one MRI a year, and there has been no sign of regrowth!

Indeed, I am humbled every single day by how incredibly blessed I am to be here, healthy and thriving.  I do not take for granted that I had “the good kind” of tumor and that I had access to the best medical care and amazing support from family and friends.  I was incredibly fortunate that I was able to use my diagnosis as the catalyst for positive change and growth in my life. I was given this gift of life, and I cherish it. 

This experience has also shifted the way I view aging.  We hear so many people say with a chuckle “it sucks to get old”.  But now I know, in my soul, that growing older is a privilege, and I will not waste it.

So Friends, there you go . . . a huge part of my “why”. Thank you for reading along and giving me the space to share this story.

During this week of Thanksgiving, I hope you’re surrounded by loved ones, lots of yummy food, and stretchy pants!!