It all started with a dull headache that lasted for two weeks. I had also experienced some minor dizzy spells during that time, so I visited my family doctor who referred me for an MRI. But before the MRI appointment, I was struck with an unbearable headache and vomiting one evening, so my wife quickly brought me into Sunnybrook’s emergency room from my home in King City, Ontario.
It was clear that emergency treatment was required, and we knew that Sunnybrook was a world-class centre.
Emergency scans that night clearly showed a brain tumour that was bleeding into my brain. I was told surgery was required to save my life. The next day, I learned that if I hadn’t gone to the hospital when I did – and Sunnybrook in particular because not all hospitals have the craniotomy (surgical removal of a piece of skull to access the brain) capabilities necessary to do brain surgery – I likely would not have survived.
Looking back, I feel fortunate because I avoided the difficult decision-making that happens to families prior to brain surgery: weighing the risks against the benefits. For me the decision was made – let’s go! I endured 4.5 hours of brain surgery while my family (wife, daughter aged 20 and son aged 17) waited at the hospital.
The surgery was a success: with regards to the tumour I heard,“We got it all – at least what can be seen in a microscope.” Also, I had no deficits; my motor skills were intact, my speech was good and my cognitive abilities seemed normal.
A few days later I was able to play cello: this is my ultimate test of mobility and coordination. As a professional cellist, I’m super sensitive to the quality of my playing and notice even the smallest change. When I played the first notes – my cello playing was good! What a relief.
Fear and shock of diagnosis
For two weeks as I recovered from brain surgery, I had no idea whether the 5cm tumour they removed was benign or cancer. I’ll never forget the day doctors told me and my wife that not only was the tumour cancerous, it was a particularly dangerous and aggressive form of brain cancer called Glioblastoma or GBM.
Certainly, in the hours and days following this diagnosis, I was scarcely able to mentally function on any level given the fear and shock. I fully credit the generosity and care shown from my yoga instructor in the following days (as we talked and meditated together) for returning me to mental health with feelings of optimism and glowing internal energy. I had enjoyed a physical yoga practice for years but had never pursued the spiritual/energy side of the practice and to this day, it’s been an incredible and uplifting part of this cancer journey.
A new focus in life: GBM
GBM has been the sole focus of my life since the day of diagnosis. Since that day, I’ve had 30 rounds of radiation (every day at Sunnybrook for six weeks) and 43 days of chemotherapy. Both of these treatments had their challenges but, with the support of friends and family, they’re now behind me. The radiation treatment in particular was difficult because it involved wearing a custom tight-fitting mask that is bolted to the treatment table (to ensure no movement and repeatable positioning). I’m somewhat claustrophobic, so this is terrifying for me. I continue my treatments with passion every day to help give me the best chance of beating the odds and surviving as long as possible to be with my loving family and to enjoy life!
To me, this means a holistic approach to health that includes the great work and advice of the doctors at Sunnybrook: exercise; healthy eating; quality sleep; stress reduction and good mental health (including optimism and positive energy!). I’m a professional engineer and I’ve temporarily left my day job as a Senior Vice President at a large global infrastructure company. My part-time evening job as a cellist continues, and I still perform with the York Symphony Orchestra and the Paskke String Quartet.
GBM has had a profound impact on my life, but it’s also taught me many things, such as the importance of the special people in my life, and I’ve come to see it as part of my journey.
Helping invent the future of healthcare
On the same day of my diagnosis, the GBM Focused Ultrasound (FUS) clinical trial was approved. My wife and I took this as an early sign that the FUS trial was for me – and it was meant to be. While the treatment seemed a little daunting at first, I was excited about this high-tech procedure and proud to be one of the pioneers. As an engineer, I’m fascinated by the high-tech science and very interested to be involved.
The actual treatment involves the following: arrival at the hospital well before treatment for registration and prepping (e.g. vitals, IV line, blue gown, etc.); a full head shave (apparently hair can cause turbulence that disrupts the ultrasound); fitting of “the frame” which is a halo-like fixture that is screwed into the skull (it’s quite unpleasant but the local anesthetic helps); attachment of the ultrasound helmet to the frame; taking the oral chemo drug called Temozolomide (TMZ); five hours in the MRI (first for planning imaging and then for the opening of the blood-brain barrier (BBB) to allow the chemo drug into the brain at the former site of the tumour).
Given my slight claustrophobia, five hours in an MRI is quite scary for me but again, the support of the team really helps, as does a sedative from the anesthesiologist. Following the FUS treatment, the doctors evaluate whether to keep me overnight or send me home. The next morning there is a follow-up MRI to ensure that the BBB has closed.
Why I am participating in this study
Involvement in the trial means two things to me: firstly, I hope my involvement in the trial can advance this exciting form of treatment so others can survive GBM and other brain ailments with a decent quality of life. Secondly, I hope participating in the trial helps give me a better prognosis.
It’s super exciting that the FUS technology can open the BBB without the use of a scalpel, and allow for the treatment of many varied conditions: GBM, Amyotrophic Lateral Sclerosis (ALS), depression, essential tremor and Alzheimer’s disease, just to name a few. With respect to GBM in particular, I know there are other drugs that have been shown in the lab to be effective in treating GBM – but the BBB was always a barrier to their use. As FUS is shown to be safe through this trial I hope that more of these drugs come online as treatment options for those with GBM.
It takes a village
I would like to thank so many people in my life for supporting me on this journey and sending positive energy my way when I need it most. I’ve found this to be a gift that comes with this disease: the gratitude for everything that is good in life and gratitude towards those friends and family and colleagues who love and support me every day.
And to my health care team — for your skill, expertise, care, support and compassion, I truly thank you.
For more information or to inquire about eligibility for the trial, please contact Maheleth Llinas at email@example.com
Learn more about oncology trials at Sunnybrook’s Harquail Centre for Neuromodulation