Steph : Music lover. Spiritual Gangsta. Moonchild. HipHop 4 Ever. Glioblastoma brain cancer survivor
I often get asked to speak about my diagnosis. I would like to give a bit of the history of my diagnosis including some of things I've done.
I was diagnosed 06/19/2016 with Glioblastoma multiforme (GBM). I was unable to have a full resection due to the location of the tumour. My surgeon (Dr. Da Costa from SunnyBrook) was able to remove 92% of my tumour. I did the standard 6 weeks back-to-back of gamma knife radiation and the chemo (Temozolomide) that chemo was pill form. I had 2 week break then I started what was to be another 8 months of Temozolomide, however after 3 months of that chemo my tumour continued to grow while in chemo. I was told I failed the standard chemo. I had a lot of brain swelling so my medical team recommended another chemo. I did 4 treatments of Bevacizumab (Avastin) to get the swelling down. Those treatments were every 2 weeks for 4 sessions. I was then placed on another chemo called Lomustine. I took Lomustine for a little over a year. Sometimes my tumour was stable and sometimes not. It has been stable for over two years now. I go for MRI's every 3 months to monitor the piece that is in my head.
I was never diagnosed because of seizures, they say 90% of people are. I didn't have my first until October 2016 (4 months after diagnosis) After my first seizure I was put on Keppra (Levetiracetam) right away. What lead to my diagnosis was one month prior I had some off behaviour. (ie: I put my arm in the oven deliberately and lied about how I got a second degree burn). I knew I lied but didn't understand why. I also had a few accidents with my car and one time I didn't know why I was unable to figure out how to put the keys in my car door. There were signs of unusual behaviour but myself and others didn't know what was going on. I had my first big seizure 4 months after radiation & chemo, that's when I was placed on keppa for seizers. I was on 3000mg a day but as of 03/2020 it's 2500mg.
After I was informed I failed the standard radiation and chemo within 3 months (August 2016) I decided to look into some of the things.
In February 2017 I started seeing a naturopathic doctor and a cannabis doctor. My naturopathic doctor put me on frankincense, known as Boswellia (Indian Frankincense) herbal extract taken from the Boswellia serrata tree. Resin made from boswellia extract has been used for centuries in Asian and African folk medicine. I take it in pill form and I also have it in oil but for defusing.
I also got a medical prescription January 2017 for cannabis oil and also in dry leaf cannabis. I take cbd oil everyday. My dry cannabis has two different strains I go between, bubba kush and girl scout cookies. I use the dry for my headaches as needed. My cannabis doctor I see every 4 months and my strains and amounts sometimes change.
Also, prior to getting Glioblastoma I was marathon runner and food wise I pescatarian. I never consumed any dairy, even as a kid (allergies) In late 2017 started all vegan. Most of my protein is from lentils, beans, quinoa, veggies and fruit and I also take a plant base protein powers.
Sometimes I was criticizes for using cannabis oil especially because I have a family. After standard treatment failed me a good friend of mine sent me this video on Glioblastoma and cannabis oil by a Dr. Mara Gordon for cannabis part start watching at 12:15 min mark (https://youtu.be/7ljl7d44yOA)
Here are a few of my scans over the past 4 years & 6 months. The first top square was after my 9 hr surgery that removed 92% of my tumour. Even after everything sometimes it was stable and sometimes not. The big square was the last MRI and you can see it looks smaller. I know everyone is different and every Glioblastoma is different and everyone's journey is different, but I believe in everything I am doing is helping me. I do have some deficits everything (ie: loss of feeling in my right leg & foot, short term memory loss, can't drive anymore and difficulty with printing/writing), but I am working hard with physio and occupational therapists.
My immune systems took a hit two years ago as a result of all chemo, all the different chemos I've taken (Temozolomide, Lomustine, Avastin) as a result ended up with shingles & chickenpox at the same time in February of two years ago and is caused nerve damage.
The lesions have healed but the nerve damage is still present.
Last year as a result of all the treatments, I was diagnosed with chemo induced Raynards disease and Neuromuscular & postherpetic neuralgia nerve damage.
I am going to keep fighting and continue sharing awareness of Glioblastoma, the must unfunded cancer worldwide.