MARQUETTE — There’s a t-shirt in Amanda Bivins’ wardrobe that carries more significance than the rest of her attire. By clothing standards, it’s nothing overly spectacular, and she admits, vastly overpriced at $75. But the KISS T-shirt she bought while attending one of the band’s concerts is a symbol of her new outlook on life and the level of appreciation she has for each day. Because three months ago, prior to the trip, a tumor on her brain complicated everything.
There were headaches, double vision and an overwhelmingly feeling of doubt about what Amanda’s future held. But there she was at the concert, living a normal life and taking it all in. She wanted something to mark the occasion.
“I leaned over to my friend and said that I wanted to buy the T-shirt,” said Amanda, who is the Bariatric Coordinator at UPHS – Marquette. “Before, we didn’t know where I would be and what my life would look like … But here we were, sitting at the concert, and so we bought the shirt.”
It was an introspective moment for Amanda who considered everything she went through to get to that point. From being diagnosed with a tumor at the Brain and Spine Center at UPHS – Marquette to the Gamma Knife radiosurgery treatment and the continued monitoring of the tumor’s status.
“I try to slow down now and enjoy things a little bit more,” Amanda said. “Be thankful for what I have and be able to share my story. If it just helps one person say I made it a little bit easier for them, then that makes me feel like I did something.”
Amanda’s story started with a neurological exam with Dr. Amy Martyanov at UPHS – Marquette. Amanda had always experienced migraines since she was a teenager, but she started to have other symptoms she initially credited to fatigue. On a trip downstate in October of 2018, her bouts of double vision continued, even when she was driving as she saw two of each car in front of her. Her vision continued to deteriorate throughout the rest of the trip, and even when she returned home, Amanda’s days would begin with double vision as soon as she woke up.
Amanda scheduled an eye appointment, but nothing was structurally wrong. Her vision hadn’t changed and she didn’t need a new prescription. That set up her visit with Dr. Martyanov, who put Amanda through a regular neurological exam. Those results showed nothing irregular. Nor did another eye appointment where her eyes were dilated and Amanda was checked for cranial nerve damage.
It wasn’t until an MRI ordered by Dr. Martyanov that the source of Amanda’s issues became evident.
“We ordered imaging and found that she had a brain tumor,” Dr. Martyanov said. “We knew by looking at her imaging that it was a very complicated case … The tumor was located around some really vital structures in the brain, including one of the carotid arteries.”
Just under three hours after undergoing the MRI, the neurology office called to inform Amanda of the mass on her MRI. She cried. She would cry in the days following the news and went through the difficulty of telling her kids.
“It was almost like getting a sucker punch. You never expect to hear those words,” Amanda said of the moment she received the phone call. “We told our kids, and that was hard. It was hard to say those words out loud to them because you don’t have answers and you can’t make promises you can’t keep.”
Despite knowing the cause for her head pain and double vision, doubt still overwhelmed Amanda and her family. They didn’t know what the mass was, what it would look like and what Amanda’s future held. Even now, it’s a presumed Grade 2 meningioma, but there is nothing that guarantees its classification since the tumor can’t be biopsied.
Amanda met with UPHS – Marquette’s Dr. Sonia Geschwindt to get an overview of her tumor. Dr. Geschwindt went over Amanda’s MRI and utilized a model of the brain to show Amanda where her tumor was located in comparison to the rest of the brain.
“I used the model to show her where the tumor is growing and what structure and nerves are involved in the tumor,” Dr. Geschwindt said. “We talked about the treatment options, but her tumor was in a very tricky place where any attempt at surgery would cause some pretty severe nerve damage because the tumor was intertwined all around the nerves.
“Nowadays with this type of tumor, the goal becomes to control it and stop it from growing and possibly even shrinking it — not so much removing it. I recommended she had radiation treatment, and for radiation treatment, we can follow the treatment over time.”
After being referred for Gamma Knife radiosurgery, Amanda underwent the procedure on Nov. 30 and was able to go home immediately afterward. She stayed home from work for a week before returning to half time and eventually working herself back in on a full-time basis. Amanda would continue to receive care at UPHS – Marquette as the neurology staff continued to watch for any activity from her tumor.
“We’re monitoring for change. We want the tumor to freeze in time and stop growing,” Dr. Geschwindt said. “Sometimes when you radiate it and freeze it, it actually shrinks a little bit. So we’re looking to see if it’s not changing anymore or shrinking a little bit over time.
“If it grows again, that’s a negative sign because it shows it didn’t respond to the treatment and then we would have to reconsider other treatment options.”
So far, so good.
Following two MRIs since radiation, the tumor has shown no signs of growth. Amanda will still experience ongoing symptoms from the radiation, including headaches on one side and eye pain, but the tumor has remained stable.
“The hope with the Gamma Knife radiation is that it stops the replication of the tumor cells, so it might not necessarily ever shrink, but we don’t want to see it grow,” Amanda said. “I don’t have double vision anymore, and the thought was that when the tumor cells stopped replicating, it would give the cranial nerve a chance to heal itself and start to repair which would heal my vision. And I see great now. It’s doing what they exactly wanted.”
The diagnosis and guidance she received at UPHS – Marquette has given Amanda a renewed positive view on life. But her experience also allowed her to witness the hospital’s system of caring for patients on a different spectrum. Instead of coordinating treatment like she’s done in the Bariatric and Metabolic Institute, Amanda discovered what it was like to be cared for as a patient.
“I was really proud of the care that I got,” she said. “If I didn’t work here and I was only a patient here, I would have been really satisfied with everything. I didn’t wait for days or weeks for test results and got them really quickly. They returned my phone calls. Everything went very, very smooth. My referral went smooth and my records got there. Everything was just seamless.
“Seeing it from both perspectives has been interesting. The people that work here are compassionate and they like what they do. They take care of patients, and I really appreciated all of that.”
The UPHS – Marquette Brain & Spine Center works in collaboration with the Upper Michigan Brain Tumor Center, whose mission is “to empower patients and families dealing with brain tumor through advocacy, research, education and treatment.”
The UMBTC and UPHS annually hold the Hope Starts Here Challenge with the goal of raising funds and awareness for the UMBTC. To learn more or sign up for Saturday’s race, click here.