My Lost Balance Turned Out to Be Brain Tumor

You wouldn’t imagine that briefly bumping into a wall in your own home would usher in a significant change in your family’s life. Leo Weisheit, a 63-year-old IT consultant from New Jersey, experienced this, however. While walking between his kitchen and garage one afternoon, he briefly lost control of his movements and grazed a wall. The strangest thing had happened, he went to tell his wife Roxanne. If he moved too quickly, he felt “just a tiny, little bit” out of balance.

The day had progressed normally up until that point. Leo had prepared breakfast that morning and taken his daughter Annalise, who was 10 at the time, for a bike ride. If Annalise hadn’t been exhausted, he would have been able to ride for longer because he felt great afterward. He usually felt great, so he immediately realized something wasn’t right.

Although a little crooked, he was completely himself. Both his walk and smile were crooked, Roxanne recalls. Roxanne initially believed he had a minor stroke and they decided the best thing to do was head straight to the hospital. Roxanne was slightly alarmed but not in a panic.

Arriving at the hospital

They waited with their daughter in the emergency room for hours until it got late and a friend arrived to pick her up. Leo stayed behind with Roxanne. At first, medical professionals concurred that Leo’s incident sounded like a stroke. The moment he was able to successfully complete a number of tests, though, the staff started to unwind.

They weren’t in emergency mode, Roxanne claims, “and when it’s a stroke, they’re all in emergency mode.”

Eventually, their doctor advised Roxanne to return home and told them to keep Leo overnight. But soon after leaving, Roxanne received the terrifying call that nobody ever wants to receive while travelling from the hospital to their home.

Unprepared, Roxanne made a sudden stop in a parking lot. She always believed she was the one who was ill.Her husband has been her strongest supporter for the past 16 years. He has always fought my illnesses alongside me as I have spent my entire life battling them. He’s been my rock forever, she says.He had maintained a healthy weight of 190 pounds since college by eating well and working out regularly.

Roxanne admits, “I had no idea what brain tumours were.” The most terrifying thing in the world is what you hear. I broke down.”

Leo was shown images of his brain and the tumor, a clementine-sized mass, in the hospital room one hour away. His right side was affected by the tumor, which is what contributed to his earlier unsteadiness. I stepped off the curb and got hit by a bus, as the old saying goes, Leo explains.

The rest of the process happened very quickly. Leo recalls that perplexing time: “The next thing you know, you have a doctor telling you that you need to have brain surgery in two days, and you say’sure’ because you don’t know what else to do.”

The family was accustomed to hospitals and operations, but this was unlike anything they had ever seen. With an operation, doctors can usually describe in detail what will take place in the operating room and how you will emerge. With a resection of a brain tumor, that is not the case. They are unsure of your condition when you awaken or even if you will. You might wake up unable to walk, talk, or see if they hit something, says Roxanne.

He was able to see when his eyes opened. He was able to walk when he stood up to use the restroom. Even though they had removed 80% of the tumor, he was still Leo. His family rejoiced.

A frightening diagnosis

Leo Weisheit discovered he had grade IV glioblastoma (GBM), an aggressive cancer that develops in the brain or spinal cord, a few days after the hospital examined the tissue.

Roxanne had the impression that they could handle this just by giving the cancer a name. But when she discovered that Beau Biden, Ted Kennedy, and John McCain had the same cancer, the puzzle pieces started to fit together. The most aggressive type of high-grade gliomas, GBM, is what the doctors would go on to describe in the days that followed. Patients have a median survival rate of 15 to 16 months despite treatments that can slow the progression of GBM and lessen symptoms.

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

“Gliomas are the malignant version of the glial cells,” says Matthew Warner, Ph.D., a researcher at Cancer Commons, “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.” In addition to being in a crucial place, the tumor’s critical location makes it particularly vulnerable to any physical or chemical treatment because it affects the entire body.

Anywhere in the brain, the tumour can invade healthy tissue, making every case a little different. The disease’s complications are a reflection of the location of the tumor. According to Warner, it “can alter your motor function, raise your risk of seizures, alter your behavior, and alter how you interpret the stimuli around you.” GBM can differ from patient to patient due to genetics and plain old bad luck. The only aspect of the Weisheits’ story that is typical is how the tumour caught them off guard because people don’t typically get MRIs.

After conducting months of research, Roxanne discovered that due to the complexity of each GBM case, it is essential for patients to visit a renowned brain tumour centre as soon as possible. The Weisheit family adored their neighbourhood hospital and its staff, but they wished they had known this prior to their initial surgery.

“The chances of long-term survival are much higher if they can remove 95% of the tumour or more, but resection is also not a path to survival,” says Warner. Most general hospitals lack the resources and expertise necessary to treat brain cancers, and GBM in particular.

Patients with brain tumours now have access to a few new treatments, such as the Gliadel wafer, a brain implant that slows the growth of cancer cells. However, understanding the benefits and drawbacks of these therapies prior to surgery is crucial. Al Musella, president of The Musella Foundation, says that patients frequently are unaware of the option to insert a Gliadel wafer (intraoperative chemotherapy) until after the fact if the resection cavity is not up against the ventricles. Musella has spent the last 20 years working with brain cancer patients, and his foundation is a blessing for people like Leo and Roxanne.

Getting used to a new normal

Leo completely stopped drinking wine and beer to embark on a zero-sugar diet two weeks after the initial biopsy, and Roxanne started driving him to radiation an hour away. I promised Roxanne that I would follow their recommendations, he says.

When the radiation treatment was finished, Leo switched to Temador, a medication, and an instrument called Optune. To put it mildly, it is a cumbersome device that consists of a set of bandages that you apply to your head and wires that connect to a portable computer that you carry in your backpack.

Leo now spends almost every hour and every day with Optune. Roxanne shaves his head, wipes it with alcohol, and then replaces the bandages after he takes a hot shower to remove the old ones. Leo enjoys cooking for the family and doing the laundry, and the couple still follows some of their old routines in addition to these new ones. Although 90% of the time shows the greatest benefit, doctors advised them to try to wear it at least 75% of the time. Leo claims that he wears his device 92% of the time, taking it off only to take a shower and rest his scalp.

Treatments must take into account the diversity of the patients because GBM is such a challenging cancer to manage. However, the only other options are Optune and chemotherapy, and the only other choice is clinical trials. Although these trials are somewhat inaccessible and ineffective for a disease that kills quickly and affects everyone differently due to the amount of red tape surrounding them,

Musella uses the 12-year clinical trial for a GBM vaccine therapy to illustrate the flaws in this system. The drug company conducting the trial would deem it successful and receive approval if it could raise the median overall survival of the participants.

According to Musella, 20% of the patients who shared similar biomarkers continued to live for five years.In the end, the FDA instructed the company to conduct another trial using patients who had those biomarkers, but the necessary funding was no longer available. A simple shot to the arm would have served as the vaccine therapy.

Advocating for awareness

The Musella Foundation and Cancer Commons were her first stops after Roxanne, a formidable fighter, spent the last nine months learning about GBM. Cancer Commons is a network of doctors and researchers like Warner who assist patients in locating and obtaining a personalized treatment program outside of standard care.

The bill may alter how the Food and Drug Administration (FDA) approves drugs, which would be revolutionary for conditions like ALS and GBM. The FDA may give drugs with preliminary evidence of efficacy provisional approval under a new rolling, priority review pathway. Patients like Leo who have terminal illnesses that are advancing quickly would have more options and hope, and the information gathered from them would be used in the long-term approval process.

The Weisheits have joined the cause and urge constituents to contact their representatives in support of PPA.

To keep readers informed about research happening all over the world, Roxanne has also started her own website, Cure GBM Now, and a virtual daily newspaper, Glioblastoma Daily News.

Leo has had his diagnosis for nine months after waking up a little crooked. Although his life has drastically changed, in some ways, it hasn’t. Leo admits, “I’m the kind of person who just pushes through. I keep a routine. I still get up early every morning at 6:30. As usual, I go down and feed the dog. I make coffee the same way I always have. I prepare breakfast for my daughter and myself. 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.

Roxanne is now Leo’s ally as they deal with his cancer together. She claims that when she thinks of her husband, she envisions a Norman Rockwell painting because he strives to maintain a normal life for as long as possible. The most important thing is to make an effort to view each day as a gift and focus on your blessings.

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