‘I Thought My Husband Simply Lost His Balance, But It Turned Out to Be a Brain Tumor’

A crooked walk and slack smile seemed strange. Then, Leo Weisheit was diagnosed with glioblastoma.

leo and roxanne with their daugther
Courtesy of Roxanne Black

You wouldn’t think that briefly bumping against the wall in your own house would signal a huge life change for you and your whole family. But that’s what happened to Leo Weisheit, a 63-year-old IT consultant in New Jersey. For a moment one afternoon, he lost control of his movements and grazed a wall walking between his kitchen and garage. He went to his wife, Roxanne, and told her that the strangest thing had happened. He felt like if he moved too quickly, he was off-balance, but “just a tiny, little bit.”

Up until that moment, the day had progressed like many others. That morning, Leo had made breakfast and gone on a bike ride with his then 10-year-old daughter, Annalise. He felt great afterward and could have continued biking longer if Annalise wasn’t wiped out. That’s how he immediately knew something wasn’t right—he usually felt great.

“He was totally himself, but he was a little crooked. His smile was crooked and his walk,” Roxanne remembers. Slightly alarmed but not panicked, Roxanne’s first thought was that he’d had a minor stroke, and they decided the best thing they could do was go straight to the hospital.   

Arriving at the hospital

The hours ticked by in the emergency room, where they sat with their daughter until it got late, and a friend came by to pick her up. Roxanne stayed behind with Leo. At first, doctors agreed that what happened to Leo sounded like a stroke. However, the staff relaxed when he was able to perform a series of tests with ease.

“When it’s a stroke, they’re all in emergency mode,” Roxanne says, “and they weren’t in emergency mode.”

Eventually, their doctor told them they would keep Leo overnight and advised Roxanne to go home. But not long after leaving, on the road from the hospital to their house, Roxanne received the horrifying call no one ever wants to get. An MRI revealed that Leo had a brain tumor.

Blind-sided, Roxanne pulled over into a parking lot. In her mind, she was always the sick one. Diagnosed with lupus as a teenager, she later underwent two kidney transplants and survived lymphoma. And for the last 16 years, her greatest advocate was her husband. “I’ve spent my life battling illness, and he’s always battled my illness with me. He’s always been my rock,” she explains. Leo’s only significant health scare was prostate cancer three years prior, which was dealt with swiftly once doctors removed his prostate. He’d always eaten right, exercised, and had stayed a steady 190 pounds since college.

my diagnosis
Courtesy of Roxanne Black

“I knew nothing about brain tumors,” Roxanne says. “You hear that, and it is the scariest thing in the world. I fell apart.”

In the hospital room an hour away, doctors showed Leo the images of his brain and the tumor, a mass about the size of a clementine. The tumor was on his right side, and it had caused the poor balance from earlier. “It’s the old saying, ‘I stepped off the curb and got hit by a bus,’” Leo says.

Things proceeded very quickly from there. “The next thing you know, you have a doctor telling you that you need to have brain surgery in two days,” Leo says of that confusing time, “and you say ‘sure’ because you don’t know what else to do.”   

The family was well acquainted with hospitals and surgeries, but this was nothing like they had ever experienced. Typically, with an operation, doctors can give you a play-by-play of what will happen in the room and how you will come out after. That is not the case with a brain tumor resection (removal). “They don’t know how you’re going to be when you wake up or if you’re going to wake up. They could hit something, and you could wake up unable to walk, talk, or see,” explains Roxanne.

Doctors opened Leo’s brain, performed the resection, and put his skull back with screws. His eyes opened, and he was able to see. He got up to use the bathroom, and he was able to walk. He was still Leo, and they had removed 80% of the tumor. His family was elated.   

A frightening diagnosis

The hospital analyzed the tissue, and a couple of days later Leo Weisheit learned exactly what kind of brain tumor he had: grade IV glioblastoma (GBM), an aggressive cancer that forms in the brain or spinal cord.

Neither he nor Roxanne knew what that meant at the time. “We were just so happy that the surgery didn’t do any major damage, that I didn’t understand that GBM is the most aggressive form of brain cancer.”

Simply having a name for the cancer gave Roxanne the sense that this was something they could handle. But then she learned it was the same cancer that John McCain, Ted Kennedy, and Beau Biden had, and the pieces began to fall together. As doctors would explain over the days that followed, GBM is the most aggressive form of the high-grade gliomas. Treatments can slow the progression of GBM and reduce symptoms, but patients have a median survival rate of 15 to 16 months. 

“The whole thing happened so fast, and you don’t have a moment to breathe.”

According to Matthew Warner, Ph.D., a researcher at Cancer Commons, “Gliomas are the malignant version of the glial cells which are responsible for providing support and protection for the neurons that control the many functions within the body that the brain is responsible for.” Not only is the tumor in a critical location, but that location is extremely sensitive to any physical or chemical intervention because it impacts the whole body.

The tumor can grow into normal tissue anywhere in the brain, making each case somewhat unique. The problems associated with the disease are reflective of where the tumor is located. “It can change your motor function, increase your risk of seizures, change the way you behave, and the way you interpret the stimuli around you,” Warner says. GBM can vary from patient to patient due to genetics and simple luck-of-the-draw. The Weisheits’ narrative is standard only in the sense that the tumor caught them by surprise because people don’t regularly go in for MRIs.

Roxanne learned through months of research that the intricacy of each GBM case makes it crucial for patients to go to a major brain tumor center as early as possible. While the Weisheits’ loved their local hospital and doctors, they wish they had known this before their initial surgery. 

“If they can remove 95% of the tumor or more, the chances of long-term survival are much greater, but resection is also not a guaranteed path to survival,” says Warner. Brain cancers, and particularly GBM, require resources and specialization that most general hospitals do not have. 

A few new treatments are also now available to brain tumor patients, such as Gliadel wafer, a brain implant that slows the growth of cancer cells—but knowing about the pros and cons of these treatments before surgery is vital. “Insertion of Gliadel wafer (intraoperative chemotherapy), if the resection cavity is not up against the ventricles, is an option that patients frequently don’t know about until after the fact,” says Al Musella, president of The Musella Foundation. Musella has worked with brain cancer patients for the last 20 years and his foundation is a boon for people like Leo and Roxanne.

Adjusting to a new normal

my diagnosis
Courtesy of Roxanne Black

Two weeks after the initial biopsy, Roxanne began to drive Leo to radiation an hour away, and Leo completely stopped drinking wine and beer to go on a zero-sugar diet. “I told Roxanne, ‘I’ll do whatever the doctors say will help,’” he says. 

When radiation ended, Leo switched to a pill form of chemo, Temador, and a device called Optune. It is an inconvenient device, to say the least––a set of bandages you adhere to your head with wires attached, which run into a small machine you carry in a backpack. Those four bandages create Tumor Treating Fields, electrical fields that disrupt cancer cell division and growth. 

Optune is now a part of Leo’s everyday and almost every hour. When he changes the bandages, he showers to get them off with hot water, and Roxanne shaves his head, wipes it with alcohol, and then replaces them. The couple still has some of their old routines—Leo likes to cook for the family and do the laundry—and they have these new ones too. Doctors told them to strive to wear it at least 75% of the time, though 90% shows the most significant benefit. Leo says that he wears his device 92% of the time, only removing it to shower and give his scalp break. 

Since GBM is such a difficult cancer to manage, treatments need to reflect the diversity of the patients. Yet, chemo and Optune are two of the few options available, and what you have left after are clinical trials. The amount of red tape around these trials, though, makes them somewhat inaccessible and ineffective for a disease that kills quickly and impacts everyone differently. 

Musella explains the problems with this system with the example of a failed, 12-year clinical trial for a GBM vaccine therapy. If the drug company running the trial could increase the median overall survival of patients, they would consider it successful and get approval.

“About 20% of the patients, all with similar biomarkers, lived on for five years,” says Musella. “To me that’s a success, but because it wasn’t defined that way at the start of the trial it did not get approved.” Ultimately, the FDA told the company to repeat the trial with patients who had those biomarkers, but there was no longer the funding to do so. The vaccine therapy would have been a simple shot in the arm.

Advocating for awareness

Roxanne, a powerhouse fighter, spent the last nine months educating herself on GBM which led her to Cancer Commons and The Musella Foundation. Cancer Commons is a network of physicians and scientists like Warner who help people identify and access a personalized treatment plan beyond standard care. The Musella Foundation has numerous initiatives, from a copayment assistance program to a Brain Tumor Virtual Trial and numerous educational resources.

Most recently, the two organizations teamed up to help write the Promising Pathway Act (PPA) which was introduced to congress in May 2021. The bill could change the way FDA (Food and Drug Administration) drug approval works, a game-changer for diseases like ALS and GBM. Under a new rolling, priority review pathway, the FDA could grant provisional approval to drugs that demonstrate early evidence of efficacy. Patients like Leo with rapidly progressing terminal illness would have access to more options, more hope, and the data gathered from them would be incorporated into the long-term approval process.

The Weisheits have joined in advocating for the bill and hope that people write to their representatives to help get PPA passed. Roxanne has also launched her own website, Cure GBM Now, and started a virtual daily newspaper, Glioblastoma Daily News, to keep readers updated on research taking place worldwide.

It has been nine months since Leo woke up a little crooked and received his diagnosis. Although his life has changed dramatically, in certain ways, it hasn’t at all. “I’m the type of person who just pushes through,” says Leo, “I keep a routine. Every morning I still get up early at 6:30. I go down and feed the dog like I always did. I make the coffee like I always did. I make breakfast for myself and my daughter.” Leo cannot go on bike rides now or go golfing with his friends, but he loves to cook and established “French Toast Fridays” with Annalise, a weekly tradition they can do together.  

Today, Roxanne is Leo’s support as they navigate his cancer together. “When I think of my husband, I picture a Norman Rockwell painting—he wants to sustain a normal life for as long as possible,” she says. “The main thing is to try to take every day as a gift and remember the things you can be grateful for.”

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