‘But my daughter needs me!’ I clung to walls and couldn’t focus my vision. ‘Something is VERY wrong.’: Brain cancer survivor discovers purpose, ‘I was fueled by my daughter’s love’’

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“It was a beautiful October morning in 2014. I tied my running shoes and locked the house. Four miles down a country road in scenic Upstate, NY. It had been my routine for years because, for me, running was not just exercise. It was therapy. I thirsted for the rush a good run delivered. It was the one habit helped me get lost, then found, forget my worries, and solve life’s problems.

This day would be different.

As soon as my sneakers hit the pavement, I knew something was ‘off.’ The first hundred feet, I struggled to shake the strange feeling all over my body. I felt as if I wasn’t in control of my legs. I was confused at first.

Try as I might run in a straight line, I couldn’t.

I veered off the road no matter how hard I focused on the invisible straight line in front of me. Everything felt just- wrong. I began to panic and turned back. My legs turned to jelly as I ran as fast as I could to my house. I tripped a few times over my own feet in the struggle to get my legs to cooperate.

That single jog would alter the course of my life.

Courtesy of B.J Forte

I finally reached my porch in what seemed like the longest marathon I had ever run. Grabbing the rail, I pulled myself up the half dozen or so steps. My hands shook as I tried my best to get the key in the door. At last, I was inside.

My gut screamed, ‘something is very wrong.’

Adrenaline raced through my veins as my legs continued to wobble. I was disoriented and having difficulty focusing my vision. ‘What just happened, omg what just happened,’ I asked myself over and over. I went to the bathroom mirror to see if I looked different. I didn’t. Nothing had happened on the outside.  There was no reason to feel like this. Yet, I was terrified.

All day and the next, I became more aware of the apparent change in my ability to balance. I clung to the walls to get around my house. I couldn’t stand up in the dark without falling over.

Then I remembered.

In the weeks prior, I had taken a hard fall while on the run. But I didn’t hit my head. ‘Maybe I had whiplash?’ I couldn’t shake the feeling I was in trouble.

I began to playback the events of the prior year. Strange and random things had been happening to my body, but nothing major or ongoing, so I disregarded the oddities like the feeling of ‘potato chips crunching’ in my left ear or my  increasing intolerance to bright lights and loud noises.

On numerous visits to my doctor, she ran a battery of tests to figure out why my hair was falling out in clumps and why I was waking up in the middle of the night with horrendous stomach pain.

She tested me for lupus, thyroid deficiency, and the dreaded ‘C’ word. I went to specialists seeking answers. An Endocrinologist, Dermatologist, and Gastroenterologist. I had more blood work done along with endoscopy and colonoscopy.

All the specialists insisted: ‘nothing’ is wrong with you.

Courtesy of B.J Forte

I searched the internet for answers and tried to connect all of the dots.  Then I started to wonder if the mystery virus I had the month before had anything to do with it. I awakened to a 105-degree fever and the worst headache of my life.  My nine-year-old daughter had the same virus two weeks before. She was still tired and recovering from visual disturbances, quiet seizures, and an array of other symptoms. I was so focused on her recovery; I had discounted my own, trying to convince myself it was just fatigue or stress from being a mom, caretaker, owning businesses, etc.

I went in one more time and told my doctor about the balance problems. This time, she referred me to a Neurologist.

During my first appointment, he did a physical exam and asked me a laundry list of questions about how I felt. I remember telling him I was experiencing moments of absolute dread, as if my brain was randomly playing the worst horror movie, then turning it off. He told me there was a diagnosis for what I was experiencing. It is named ‘episodic dread.’ There was some relief in hearing I wasn’t going nuts. But then, why? Why now? Why, all of a sudden? I had so many questions.

He ordered an MRI.

I will never forget my first MRI. I Googled it, of course, beforehand, in an attempt to know what to anticipate and how to prepare. I learned everyone handles them differently. If you’re claustrophobic, it’s a big deal. You strip down into a gown, lay on a narrow bed, and they slide you into a long, tight chamber where you lay entirely still for the thirty minutes or so while the machine blasts what sounds like chainsaws in your ears for thirty or so minutes.

‘Can I see the results?’

As soon as I finished the scan, I sat up on the bed and instantly realized I would fall over. The nurse could tell. She asked me if I was okay and then told me to sit for a few minutes. When I was finally ready to stand on my feet, I staggered from the table towards the changing area. To my right was the little office where the MRI tech sat. The door was open. I peeked my head in and asked, ‘Can I see my brain?’ I had never seen my brain scan, and I was curious. He sorted through the images. I had no idea what I was looking for, but I think he already knew. I looked at a few images, and didn’t see anything too exciting. Although I had no idea what I was looking for.

The tech could see I was having trouble staying upright, so he held my arm as I walked towards the changing room. I remember thinking, ‘He knows everything I don’t.’

Trust your gut.

In the weeks to follow, I had trouble getting through to my doctor to talk about the results. I left many messages with the appointment desk. Then one afternoon I was driving through my hometown, and I knew something was wrong. I was dizzy, my vision was blurry, and I was having strange sensations of electrical currents running down the left side of my body. I couldn’t wait anymore. I left a very emotional message with the nurse and begged them to call me back. I pleaded with her in the message: ‘Something is wrong, very wrong with me. You need to get me in for an appointment.’

Almost a month later, I was able to see the Neurologist for my follow up to discuss the MRI results. I waited in the lobby for almost an hour. Then after they took me back, I waited again in a quiet room all by myself for almost another hour. It was an agonizing two hours.

Finally, I heard footsteps and then a pause. The doctor fussed with the folder in the metal outside my door. The Neurologist finally appeared. He was friendly and calm. He greeted me, shook my hand, and then retired to the round stool across from me, opening the folder on the desk in front of him.

Then he sighed.

There was silence in the room as he read through the papers. As he closed the folder and turned towards me, I could hear the regret in his voice. ‘Bobbi Jo, you have what’s called an Acoustic Neuroma or Vestibular Schwannomas.’ I looked at him and said, ‘I’ve never heard of either.’ He replied: ‘You have a brain tumor.’

Although I hadn’t moved from my chair, I felt as if I were floating. I was detached from everything physical, trying to process what he was saying.

I know he continued to speak, but everything sounded muffled. Then I heard him say loud and clear, ‘Some people can go on what’s called a watch-and-wait, but you need to get treated immediately.’

Treated? How? What? Where?

The next 24 hours were a blur. I was a mess. It was a combination of panic and crying, planning, and trying to grasp the reality of every ‘what if’ I could imagine.

Courtesy of B.J Forte

I kept telling myself, ‘My daughter is only nine years old- she needs me!’ I went through a roller coaster of emotions. I felt angry, scared, and completely panicked about the uncertainty of life.

I went into research mode about the treatment options the Neurologist had recommended. I had two choices. I could undergo risky and invasive brain surgery or receive Gamma Knife Surgical Radiation treatment. Both have their own set of worrying risks.

It was now June of 2015, 8 months after the jog which altered the course of my life.

A few days had passed since my diagnosis, and there I was, in a place I never expected to be at Columbia Presbyterian Hospital in NYC with the top Neurosurgeon and his team. After careful consideration, I would undergo Gamma Knife Surgical Radiation, the first available appointment. It was all set. I walked out with a glimmer of hope, just in the nick of time. Thank God for my health insurance at the time, which covered the $136,000, 3-hour treatment.

Courtesy of B.J Forte

Two years of hell.

Twenty four months following radiation were horrendous. Radiation to the brain affects everyone differently. For me, it was a landslide of suffering such as intense three-day migraines, damage to my glossopharyngeal nerve, which controls swallowing, and smooth muscle contractions of the GI tract. Bladder spasms, extreme light sensitivity, which triggered abdominal migraines, difficulty sleeping, esophageal spasms resulting in the inability to eat sometimes – it wrecked me. My brain was traumatized. I was exhausted, frustrated, and becoming intolerant of the medication I needed to calm the significant nerves that had been affected by the radiation. As the radiation did its job, and the tumor began to die, my body fought an internal battle.

I powered through, fueled by the love for my daughter.

Every time the pain was too much to bear, I thought about Morgan. ‘She needs me.’ That’s what I told myself over and over. We celebrated the little things together. Mostly, we celebrated the animals we share. They were the most beautiful distraction we needed during such a difficult time.

Courtesy of B.J Forte

In 2017 we decided to adopt six dwarf pygmy goats. Unbelievably cute, funny, silly, crazy, and full of personality. We spent hours out in the goat pen every night, cuddling them and trying to be friends. It was a time for them and us to bond even more. Between them and our cats and two little dogs, we felt like everything was going to be okay.

I have spent 27 years rescuing animals, so taking on a small herd of adorable goats was a welcomed challenge.

Then, another blow.

In 2018 our world turned upside down again. A series of unfortunate events and I was losing my businesses, charity, and much more.

Why? For the first time, I asked myself, ‘Is there a God?’ and ‘can you ask God for help?’

I had never been a religious person, and my belief resided more in the idea of a ‘higher power’ than a person. I had given so much of my life to helping others. Why would these things be happening? I was a good Mom, a kind person. Why was I being dealt so many blows?

The Prayer.

On August 12, 2018, I woke up feeling- different. Something about this day was profound, and I didn’t know why. That night, I walked out onto my porch, and I looked up at the stars. I prayed for the first time in my life. ‘Please, help me. I can’t see you, but I know you’re there. Please send me someone, anyone. I need an Angel, someone to help.’ That was my prayer on that day I will never forget.

Less than two months later, a stranger showed up with a kitten who needed rescuing. My gut told me it would not be an ordinary rescue. I was right.

In the weeks following, I began talking to the stranger on almost a daily basis.

One morning, the stranger came with a message. I’ll never forget the words, ‘You are going to write the book.’ At first, I disregarded it. I had never written a book. But he insisted. ‘I know you’re the one who is going to write his book.’

It turns out, this stranger knew more than I did about trust and faith in what only the heart can see. What did I have to lose? Somebody answered my prayers from 2018. With a little confidence and belief, I began to write the memoirs of a man who traveled from Morpeth, England, to NYC. Suddenly, I was a writer. I started writing the series ‘Matches Made in Heaven-An Unforgettable Journey.’

Fast forward to 2020. My first book, ‘Matches Made in Heaven,’ is in print. Then the pandemic hit, and my hopes of launching a book, doing book tours and signings, had vanished in the blink of an eye. As a single mom, I had to get creative and reinvent myself a bit. I knew the answer would be right in front of me, but I never imagined it would be furry with four legs.

I looked around at my little home and yard and realized my animals were a constant joy and entertainment source for my daughter and me. I thought to myself, if we enjoy them this much, surely others will too.

The idea for ‘Goat Glamping’ was born.

We announced the ‘Goat Glamping’ on AirBnb in the late summer of 2020. Within 24 hours, we had our first booking. Since then, we have had reservations almost every weekend and several during the week. The response is excellent. We have become ‘Super Hosts,’ earning five stars from nearly 100% of guests. I quickly realized we had a bit more to offer guests than we had considered. The mini-farm we live on is a peaceful place, full of love and laughter. A place people can come to get away from a hectic time and truly connect with animals and nature.

Our experience with guests has been unique and memorable. We offer nightly ‘goat walks’ down a quiet country road. The ‘Goat Glamping’ experience allows guests to interact with the animals in a natural setting. The goats know the routine. We find people smile and laugh a lot during their stay. It’s priceless for us to see this and know we helped create an unexpectedly positive memory for people.

We look forward to meeting all of the new guests and sharing great memories with the animals.”

Courtesy of B.J Forte

This story was submitted to Love What Matters by B.J Forte from Rhinebeck, New York. You can follow her journey on Instagram, Facebook, and her AirBnb. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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