The Birds & The Bees & A Brain Tumour
December 10 2017 - I was brought to my knees by an explosive headache. Off to emergency where they did a CT Scan of my brain and subsequent MRIs with and without dye. Initial diagnosis, a stroke with a section of my brain still bleeding. I was transferred to a different hospital with a specialized neurology team that imaged my brain again determining it may be an AVM (arteriovenous malformation). Subsequent review by a neurosurgery team determined that I had a brain tumour in my right frontal lobe. I was released from the hospital to "get my affairs in order" in case I didn't survive the surgery.
December 19 2017 - Back to the hospital to start the standard treatment plan - Surgery to debulk the tumour and send for pathology, and waiting for pathology...
January 9/10 2018 - Result day. "You have a Grade III anaplastic astrocytoma. Unfortunately the cells are malignant". POW! Right in the stomach. Nothing to prepare you for that. "The cells in these tumours grow faster and invade other tissues with tentacles and it is difficult to remove all of the affected tissue. It can be treated with surgery, radiation and chemotherapy, however these types of cells tend to progress to glioblastoma multiforme (Gord Downie) This will end your life." My surgeon did an amazing job on the debulk and delivering a clear succinct message, as shitty as that message may seem. Next up, radiation oncology team and chemotherapy team meet and greet with amazing doctors and nurses to explain what radiation is and what it may do to stop the growth of the tumour, and the role of chemotherapy.
Median survival for adults is approximately 2-3 years with standard treatment. Some people live for decades with these things, some don't.
Today - So many decisions...
<img src="https://images.squarespace-cdn.com/content/v1/558c035ee4b0fbfcebd22a7d/1518437334134-UX327Q7Y53RYKYKEMNN6/Rory+and+Charmaine+1.jpg" alt=" Photo: Stoo Metz&nbsp; " />
Photo: Stoo Metz
<img src="https://images.squarespace-cdn.com/content/v1/558c035ee4b0fbfcebd22a7d/1518437334202-M8V80TFFTNCUVUCYXHE3/Rory+and+Charmaine+2.jpg" alt=" Photo: Stoo Metz " />
Photo: Stoo Metz
<img src="https://images.squarespace-cdn.com/content/v1/558c035ee4b0fbfcebd22a7d/1518437334467-HB4F8XAS8S3ETNZME44V/Rory+and+Charmaine+3.jpg" alt="Rory and Charmaine 3.jpg" />
<img src="https://images.squarespace-cdn.com/content/v1/558c035ee4b0fbfcebd22a7d/1518437334007-A4HO5XV4UKF9RA1VFO7V/Reminder+notes+2.jpg" alt="Reminder notes 2.jpg" />
<img src="https://images.squarespace-cdn.com/content/v1/558c035ee4b0fbfcebd22a7d/1518437334070-512EN1OPE8KTUALV3SX0/Reminder+notes.jpg" alt="Reminder notes.jpg" />
I have decided to go through a 27 day cycle of radiation. I'm going to pass on the chemotherapy. I have an 11 year old daughter and we want to spend our time experiencing life and participating in research about these brain tumours and how we detect these things in kids before the cells mutate. We are going to spend our time learning how to be kind to ourselves and to others and making life about the important stuff. Music, animals, and for Rory; navigating this world and being a warrior that stands up for what she believes in. So she can be the best bystander she can be. We want to spend time advocating for children's support groups. A place where kids have a voice with other kids to talk about their loved ones with brain tumours and cancer. So they know they aren't alone and it's okay to talk about it and it's okay when people die. It's okay.
I want to leave the world better than I found it. Rory is that legacy and I'm sure as hell going to make sure she sees this as an opportunity to blow the arse out of life. We are going to have us a time!