Jennifer's Story: "I am alive, and I am going to live"

Jennifer's Story: "I am alive, and I am going to live"

Almost two years ago, in May 2011, Cambridge, Ontario’s Jennifer Hazel was driving to work like any other weekday. A nagging headache had plagued her for two weeks but had recently begun increasing in pain. While on her daily commute, Jennifer took a detour and drove herself to a Mississauga hospital. “Something felt worse that morning,” she recalls. “I just knew I had to get checked out.”

After an initial assessment at the hospital, the attending emergency room doctor thought it best that Jennifer have a CT scan, just to rule anything out.

“I remember sitting there in the hallway, waiting for my results,” she describes. “I could see the doctor and a nurse at a computer screen, I could see their faces, and I just knew they were looking at my scan.” The nurse then came over to Jennifer and took her into a quiet room. There, the doctor described to Jennifer what the CT showed. A large mass was clearly visible – Jennifer had a brain tumour. “The first thing I thought of were my kids,” says Jennifer, a mother to two children. “I just couldn’t believe this was happening, and asked the doctor if I could see the results for myself. I wouldn’t believe it otherwise. To me, I just had a headache.”

Ten days later, after her CT scan and an MRI, Jennifer saw a neurosurgeon. That’s when she was given even more startling news. The tumour had spread to Jennifer’s optic nerve, her sinus cavity, her brain stem and pituitary gland, and even her carotid artery. “The doctor couldn’t believe I had no other symptoms aside from my headache.” The neurosurgeon explained that the non-malignant skull-base meningioma was so extensive and impacted so many areas of Jennifer’s brain that removing it would be extremely challenging. In fact, he couldn’t perform the operation.

It took two months and several referrals for Jennifer to meet the doctor who would perform the intensive surgery. When she was finally able to meet with him, Jennifer says her mind was racing with the eight-weeks’ worth of information she’d read on the Internet – something she wouldn’t recommend others do. “The Internet was my doctor during those months,” recalls Jennifer. “I just didn’t know what else to do. Looking back now, I wouldn’t say it was the best idea.” With a host of questions at the ready, Jennifer sat down with her surgeon to discuss what was involved with the operation. The resection would take 18 hours and the list of potential complications associated with the surgery was frightening: memory loss, paralysis and possibly death. “I was thinking of all the things someone can do in 18 hours, and here they were going to be in my head that long. It was terrifying. All I wanted to know was if I was going to wake up.”

Monday, September 26, 2011 was the date set for Jennifer’s operation, and she was determined to continue with her day-to-day work and life leading up to that time. “I didn’t want this to be the definition of me. I wanted to go to work and do my job. I didn’t want anyone to feel sorry for me.” Unfortunately, Jennifer’s hopes to work up to her operation date were thwarted when she became ill due to the pre-surgery anti-seizure medication she was on. This did however give her the time she needed to prepare her home and affairs. Jennifer tried writing everything down before surgery, her likes and dislikes, her kids’ birthdays and more, in the chance she lost her memory due to the operation. “As positive as I was about the surgery, I knew the risks that came with it. I wanted to make sure everything was in order, just in case,” she explains.

Five in the morning came round on Jennifer’s surgery day, and her family accompanied her to St. Michael’s Hospital in Toronto, Ontario. Fourteen hours later, Jennifer was rolled past her sister and gave her the thumbs up – a signal that everything was ok. While in the intensive care unit, nurses and doctors performed standard post-operation checks on Jennifer, to gauge if there were any effects due to the lengthy procedure. “It was then the light started to fade in my right eye, and it just never came back.” Jennifer became blind in her right eye and had nerve damage to the right side of her face, but this didn’t slow down her recovery.

While recuperating at home, Jennifer began to experience severe pain in her side. A CT scan at her local hospital found blood clots in both lungs, and Jennifer was rushed back to the Toronto facility where she had her surgery. A nine-day hospital stay followed this discovery, and eventually Jennifer was sent home, now on blood-thinning medication to prevent further clots.

Radiation treatment came next for Jennifer to treat the inoperable parts of the brain tumour. The radiotherapy caused her brain to swell and there was a trip back to Toronto for further care. It was an exhausting process that Jennifer says became part of her “new normal,” and that despite the challenges with her recovery, “I chose what to do with my treatment and surgery, and that was empowering.”

For Jennifer, moments of positivity were challenging to maintain. Feeling alone, stunned by the paperwork required for financial assistance, and learning to navigate the day-to-day with new blindness and a different physical appearance was overwhelming. “There is not enough help for people out there experiencing this journey,” Jennifer says. “I felt like no one could understand what I was going through.” That’s when she started attending the Kitchener Adult Brain Tumour Support Group.

There, Jennifer found comfort in meeting others living with a brain tumour. “I was so glad to be with people who understood how I was feeling and the emotional rollercoaster I was on. I even got to see other people with dents in their heads too!” It was this open and caring space that allowed her to share her story, and now she’s happy to speak about her experiences, hoping to help anyone who feels the way she once did.

It’s been nearly two years since Jennifer’s initial hospital visit, and she’s adapted to the changes in her life since, but it hasn’t been easy. Despite this, she’s kept her chin up and as she’s said since her diagnosis and all through the difficulties that came with it, “I am alive, and I am going to live.”

Story posted: March 2013

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