My Story
In November 2019 I was diagnosed with brain cancer and my world changed. Up until then, I thought my life was perfect. In July, my wife and I started our lives together after years of having a long distance relationship. I had moved to Canada and we were so happy to finally be in the same place.
I awoke early on a Friday morning, at 4 AM because of a bad leg cramp. Except this wasn’t a leg cramp, it was a seizure that started in my leg and promptly generalized, rendering me unconscious. I had experienced a similar ‘leg cramp’ 3 weeks prior that resolved in less than one minute and that I attributed to the half-marathon I had completed a week prior to that. There was something unusual about that cramp that made me uneasy, but I didn’t give it too much thought as it was very unlikely for it to be anything serious. Fast forward to 3 weeks later and a very confused me is being taken to the hospital in an ambulance following a generalized seizure.
At the hospital, a CT of the head was initially reassuring. The emergency physician updated us before the radiology report was available. To his eyes, the scan looked normal. A few moments later, however, the official radiology report came up and my wife and I learned, that there was in fact a lesion on my scan, most likely “neoplastic.” During that hospital visit, I also underwent an MRI which revealed, based on its characteristics, that the lesion was most likely a low grade glioma. I was told that, if confirmed as a low grade glioma, typically these are slow-growing tumors and therefore I could possibly have years before any decisions would need to be made. I was also seen by neurology and started on anti-seizure medications, to prevent any further seizures that this tumor could cause.
Over the next few months bad news was followed by more bad news. I was seen by neurosurgery only to learn that the tumor was inoperable because of its location in my left motor strip, meaning that a surgery would leave me paralyzed on the right side. We decided to monitor the tumor with another scan in two months.
After the diagnosis, things seemed to stabilize somewhat and I thankfully did not have any other seizures. Then on Christmas Day, during dinner another seizure began. It involved only the leg but it did not stop and and this again landed me in hospital. The seizure lasted 3 1/2 hours uninterrupted despite multiple rescue medications being administered at the hospital. Over the next few weeks, I experienced multiple seizures daily and required multiple anti-seizure drugs to be added to my regimen. It turns out that seizures caused by brain tumors are difficult to control despite taking medications. A new MRI in January 2020 confirmed my worst fear. The tumor was in fact growing which made it a higher-grade glioma than originally diagnosed. I was told I needed to move forward with a biopsy and start treatment as soon as possible.
I underwent the biopsy in February 2020 and was told that my tumor was a grade 3 anaplastic astrocytoma, IDH negative, meaning that it was more aggressive and less likely to respond to treatment. All other molecular testing and sequencing was delayed given the COVID pandemic. Months later, in November 2020, I learned that based on limited sequencing, my tumor was actually a glioblastoma (grade 4 brain cancer). To this day, this does not sound real.
“Don’t go looking for the reasons, don’t go asking Jesus why”
Instead of dwelling on the terrible news, I chose to mobilize my strength and resources and fight. I have been fighting hard, harder than I ever fought before. I sought multiple surgical opinions in Canada, the US and Germany, all of which agreed that my tumor is inoperable.
I therefore completed standard of care treatment which consists of 6 weeks of concurrent chemotherapy (temozolomide) and daily radiation treatment - followed by 7 additional monthly cycles of chemotherapy alone. The treatment shrank the tumor somewhat and I had 3 stable MRIs. Then, my seizure control worsened again and a new MRI confirmed further progression of the tumor with multiple new lesions that had developed, practically overnight.
In January 2021 I enrolled in a clinical trial of immunotherapy in Toronto. I only had 2 infusions of the trial drug when I noticed severe headaches, vomiting as well as loss of function in my right arm. That prompted an emergency room visit where further progression of my tumor was confirmed and I was removed from the clinical trial. My condition worsened further at home, with additional loss of function in my arm, severe headaches and loss of memory. I was admitted to hospital because of severe brain swelling.
“There is a crack in everything, that’s how the light gets in”
Thankfully, at the hospital I responded well to steroids and recovered both my memory and right-sided function almost completely. Currently, I am on Avastin therapy (a medication that’s meant to stop blood vessels from feeding the tumor) and a different (last line) chemotherapy- lomustine. This combination, while helpful at the moment, is only a temporary solution.
I therefore, have been searching for other clinical trials – specifically in the US, where most of the trials are being carried out. But unfortunately, because of exclusion criteria or other limiting factors, I have not been able to enroll in any of these. The cost of most clinical trials would also be prohibitive, ranging from $250,000 - $400,000 (I am no longer insured in the US since moving to Canada, despite being an American citizen, so all expenses would have to come out of pocket). Serendipitously, I came across a trial vaccine therapy that is currently only offered in clinical trials in the US but readily available in Germany. This has given me hope.
“Don’t dwell on what has passed away or what has yet to be”
So what am I doing now? I am choosing hope over despair, gratitude over fear and life - I choose life. I love life and have never wanted anything more. I still have many plans - I want to continue to wake up to a new day, to feel a warm breeze, to go fishing, to love, to laugh, to have kids and to grow old. I am committed to doing the work - I began eating a strict, very healthy vegan diet. I take supplements to boost my immune system, I exercise as much as I am able and I am becoming more mindful of every moment, maintaining a positive attitude. I truly have hope – hope that the treatment in Germany will help delay, stop or even cure my disease.