Brain Tumor Foundation: ‘Best group of people you’d never want to meet’

In 2014, after a year of medical ailments, University City resident Skip Shank heard the words no one wants to hear from their doctor: You have a brain tumor.

Specifically, a grade-four glioblastoma in the parietal lobe of the brain that controls sense of space and surroundings, which was also pressing against the motor strip of the brain that controls ambulatory functions.

To assist him on the path to recovery, he came across the San Diego Brain Tumor Foundation and its monthly support group meetings at Moores Cancer Center in La Jolla.

Leading up to his diagnosis, Shank told La Jolla Light, he experienced numbness and tingling on his right side for an entire year. “I chocked it up to (pre-existing) sciatica. My primary physician suggested exercises to strengthen my side,” he explained. “At one point, I had periodic seizures that I thought were muscle spasms.”

Then one day, Shank said he felt like the right side of his body was as heavy as lead, and went to the emergency room the following day.

Doctors ran the normal battery of tests, but because a neurologist was consulting on site that day, Shank also underwent a CAT scan. It was then doctors saw the mass in his brain that was 133 cubic centimeters — the size of an orange.

The next day, doctors at UC San Diego resected 75 percent of the tumor.

“When they first go in, they want to remove as much as they safely can, but there was a lot of blood flowing through that area and those tissues, so they had to be careful,” Shank said, adding that he had seizures during the surgery.

While normal protocol includes chemo and radiation, Shank opted for additional surgery because at grade four, the tumor was aggressive and highly susceptible to metastasizing. So a second surgery was scheduled at a facility in Los Angeles.

From there, he was treated with 42 days of radiation and a year of chemotherapy, and an immunotherapy-based clinical trial.

And while medical science helped Shanks’ physical healing, the San Diego Brain Tumor Foundation helped with emotional support.

“I started attending as soon as I was well enough to do things on my own,” he said. “It provides so many levels of support — emotional, comfort, confidence and familiarity. What I find most valuable is the sharing of information: everyone is on a different path, but has a similar experience. We share treatment options, insurance horror stories, whatever it may be to ease the journey for those in the same boat.”

About the Brain Tumor Foundation

San Diego Brain Tumor Foundation president and executive director Connie Reeves Campbell said the Foundation started in 2002 to provide different ways to ease the journey, including all manner of support for families with loved ones undergoing treatment for brain tumors.

The Foundation holds a charity golf tournament every year to raise money to distribute (by way of gas and grocery gift cards) to patients, and also grants funds to help them cover rent or medical bills. Additionally, Foundation volunteers help patients navigate the treatment process, assist when the patient files for disability, and provide emotional support to patients and their families.

During the holidays, the Foundation presents gifts, blankets, teddy bears and/or pajamas to its “adopted” families.

“Some people just want someone to be there when they wake up from surgery,” Campbell said. “We were able to give one family $15,000 for rent and medical bills. We helped a young mom who had an 8-year-old child with only six months to live. She needed to take a leave of absence, so she took time off from work and we were able to pay her rent for those six months. Her little girl was able to go to Disneyland and the mom didn’t have to worry about those expenses.”

She added: “There is a lot of help out there for funding research, which is great because we want to find a cure for all cancers, but some of these families could not make it day to day if they didn’t have some support to pay their medical bills and keep the roof over their head.”

Campbell said she started the Brain Tumor Foundation following her husband Dennis’ death in 2000, after a two-year battle with brain cancer.

When Dennis was diagnosed, she explained, it was with a benign tumor. “He had a seizure and that led to his diagnosis, which he handled way better than I did,” Campbell said. “I started to cry and he said, ‘We’re going to be alright,’ and I said ‘what?!’ But he had a small network of friends that had brain tumors and who supported each other. … After about a year, he had another seizure and the tumor came back malignant. So he had a brain surgery, but the cancer spread quite fast and it was a rare type, typically found in children’s kidneys. He did radiation, but still passed away six months later.”

At the time, she pointed out, “there weren’t any support groups.”

So she started one.

“Dennis inspired me because he was a warrior and didn’t let it get him down. He had a positive attitude and left a mark in his community. I kept meeting families that didn’t know what to do and I decided to find a way to give back in his honor.”

Twice-monthly meetings

The Foundation hosts two monthly support groups: one in Point Loma and one in La Jolla (the next one is 6:30 p.m. Tuesday, Feb. 12 at Moores Cancer Center, 3855 Health Sciences Drive) and welcomes 45 people.

“It’s a disease that hits people, but still, a relatively small community,” Campbell said. “It’s an emotional diagnoses and an emotional journey. We have a lot of warriors that fight hard — and keep coming back after five and six and even 18 years out — to help someone else who is newly diagnosed. They want to help the next person. If I can go to a support group and see someone that (has survived) for 10 years, that is going to give me a lot of hope.”

One of these returners is Shank, who is considered “progression free” or “no sign of growth or regrowth” (he doesn’t use the term ‘in remission’), but still attends the support group.

“I go because I like to hear what’s going on in the cancer world and at the same time, I like to be a source of information,” he said. “It’s a good group. They supported me when I was in need and I found comfort in seeing longer-term survivors, so I continue going. I was in that position where a doctor sat me down and said ‘You have 12 months to live,’ and had someone with me fighting that fight ... it was so valuable. It’s the best group of people you’d never want to meet.”

Want to help? Campbell said the Foundation is always collecting donations of gas and grocery gift cards, and cash, but is also in need of volunteers and board members. The next “Swing and Support” fundraising golf tournament is May 20 at the Rancho Bernardo Inn, 17550 Bernardo Oaks Drive. sdbtf.org

Copyright © 2019, © 2019, The San Diego Union-Tribune, LLC. All rights reserved.
52°