Brain Tumor Survivor

My Story of Hope

Even in her wildest dreams, comedy writer and producer Jeannie Gaffigan never imagined she’d have a brain tumor. Surrounded by an incredible support system, she credits her recovery to the coming together of her community, spirituality and science.

 

During a regular medical appointment with our kids in April 2017, I mentioned to our pediatrician that I’d lost the hearing in my left ear a couple months earlier. She urged me to see an ear, nose and throat specialist. After several tests, my ENT couldn’t find any reason for the hearing loss so he scheduled an MRI. My husband, Jim, and I were shocked when he told us I had a mass in my brain.

Because this discovery was out of his realm, he referred me to a few neurosurgeons, explaining that he was skipping a neurologist because the mass would likely need to be resected. At this point, he still hadn’t used the word “tumor,” and it was difficult to conceive that he was actually talking about surgery on my brain.

I felt like this had come straight out of left field. I’d dismissed symptoms, such as fatigue, headaches and allergies, for a long time because they seemed like normal issues to have, especially when you have five kids, a husband and a career.

Like most people, I didn’t know a brain surgeon, so I called one of the neurosurgeons he recommended and got as far as the receptionist. The first appointment was a month out. I had no idea if waiting a month was okay. On the one hand, I thought perhaps they were telling me it wasn’t a big deal and that I could wait a month, but I just wasn’t sure. I called the next referral to see if I could get in any earlier, and it turned out to be a different doctor in the same office. The same receptionist answered the phone! The second doctor, however, had a spot open a week earlier so I took it. In the meantime, I was instructed to pick up a copy of my scan to bring to the appointment.

When I picked it up, I hoped I could look at it to learn a little more, but it wasn’t just something I could pop in to my DVD player. I felt like l was in limbo. I knew I had this mass in my brain and it was extensive enough that I needed surgery, but I hesitated to share the news, even with my parents and our children, because I couldn’t tell them anything about it. I also wondered if anyone else in the world had been through the same thing and was actually walking around just fine. I just needed more information, and I remembered that a childhood friend became a neurologist in Milwaukee. I called him, and he asked for the report and the scan.

I did something next that has gotten me through my most difficult times. I prayed, asking for guidance because I was lost. I called a family member who I felt could help me in that area. I explained what little I knew and told her I needed the help of a higher power. I had five kids and a husband who needed me, so I asked her to spread the word and, basically, storm heaven. As we talked, she recommended a hospital in New York City, far from our home. I told her I actually had my appointment but appreciated the thought.

The next day, my friend from Milwaukee called and told me I needed to get into an operating room immediately. I asked him how that was even possible because I didn’t have a doctor. He told me to identify the best neurosurgery department in New York City, take my scans and go to that emergency room. The ER staff would get me to the right place.

I called my ENT and told him what I was doing, and he suggested where to go. Through a series of happy accidents, I ended up in the office of the chairman of the neurosurgery department at the same hospital my family member had recommended.

After having more tests, we learned the tumor was a papilloma of the choroid plexus. It was very large, about the size of a pear, sitting on my brain stem. Although it had an 80 percent chance of being benign, it was in a very precarious position. It had to be removed because it was intertwined with lots of cranial nerves and was compromising key functions, such as the hearing in my left ear.

The neurosurgeon explained his treatment plan thoroughly, approaching how he’d remove the tumor. When his physician’s assistant asked if I’d like to seek a second opinion, I declined because I knew I was in the right place. Just like you know when you fall in love, or land the best job or pick the perfect school, I knew he was the right doctor for me.

We had two days to prepare for the craniotomy. Jim and I were in this together, and we got very practical. I made sure he knew things like my computer passwords and what the kids liked to eat. I called school and told them I wouldn’t be at drop off for a while because I had a brain tumor. We took everything day by day and focused on normalcy.

At the time, our five kids ranged in age from 4 to 12. We had different age-appropriate conversations with each of them that boiled down to Grandma coming to stay while I went to the hospital to have something taken out, like what happened with their tonsils. The youngest was concerned I may need a shot, but the next youngest thought that’d be okay because I’d probably get to pick a prize out of the treasure chest. The older kids understood the gravity of the situation, but all the conversations were extremely positive. We’ve laid a foundation based on honesty with our kids, and it made this difficult discussion a little easier to have. We told them that with all of the love in our family, we’d get through it, and we spent the next two days doing things we usually did and enjoying every minute of it. We couldn’t know the outcome, but if something unexpected did happen, we wanted their last memory of me to be of something really good.

The surgery was a success, and my recovery is nothing short of miraculous. I had some serious challenges, and I’m managing long-term effects. For a time, I couldn’t breathe, swallow or eat on my own. I needed a tracheotomy and a feeding tube. I still have limited swallowing capabilities, but I work with a speech and swallow therapist. I have residual paralysis in my vocal chords, and I sound a little slurry. According to Jim, it sometimes sounds like I’ve had a little too much to drink. Physical therapy is helping me manage weakness on one side, and I’m working hard at learning not to overdo. I get more fatigued than normal, so I’m moving a bit slower and appreciating smaller accomplishments a little more. And, I have an MRI every six months as part of my follow-up plan.

During the highest crisis times at the hospital and at home while I was immobile, I had incredible help from Jim, dear friends and my eight siblings who came from all corners of the country. They brought food, took our kids to birthday parties and visited. I’m used to taking care of everything, and I had to admit that I needed help and not be embarrassed by it. That’s the true definition of humility, and I’m so lucky to have such a wonderful support system. One friend said she finally understood why I had so many darn kids.

I share more details in my upcoming book When Life Gives You Pears, but my advice to anyone in a similar situation is to advocate for yourself. Find an expert you’re comfortable with because this will be one of the most vital relationships you’ll ever have. Next, make sure you have a plan, and don’t stop until you feel informed and know what to do.

Mine really is a story of hope. I still sweat the small stuff, but at least now I’m aware I’m doing it. I don’t spend one day taking for granted how it all turned out because I know it could have been much different. During this time of unrest, experiences like this make us realize the human spirit is stronger than any of us know. I’ve seen the goodness in people.

Read more about Jeannie’s experience in her new book, “When Life Gives You Pears,” currently available for pre-order at your local bookseller or the bookseller of your choice.

 

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