Today I sit down to write. I haven’t done so for awhile. I’m a selfish blogger; I write when I want to, not according to any schedule. And today, I find my thoughts and attention are prepared and focused on telling you the story of what I’ve been up to over the past weeks. Readers here know that in May 2015, my semi-annual MRI showed advancement of my brain tumour, and that my medical team recommended surgery as the next step. I’ve previously posted regarding the plan for my awake craniotomy, which took place September 9. As the saying goes, the surgery was a success. And it was a singularly amazing experience.
Off the top (there will be no end to the available craniotomy puns over these next few posts…), I have to say that I just feel extremely fortunate to have come through it so very smoothly; I’ve expressed to many people that I feel as if I may have quite over-dramatized the whole thing beforehand, because it’s been rather anti-climactic. That is, of course, a little tongue-in-cheek, and I do not underestimate how fortunate I am to be able to joke about it. I attribute my good fortune to an excellent medical team, their skill and preparation, and the preparation that my family, supporters and I undertook as well.
I’ve set out my accounts of the preparation and surgery into a couple of posts, and thanks for all of the interested questions I’ve received, I hope you find what you’re looking for within them.
I find myself also needing to provide a confession of sorts, in this introductory setting. I’ve been blogging my experiences and thoughts since diagnosis with this brain tumour in 2012. I started eating a ketogenic diet in 2013, based on research I’d read about its use in controlling seizures and animal studies of potential to slow growth in brain tumours. I was motivated to share information I’d found because I thought it was not easily accessible, and that it was a valid option that could potentially support medical interventions, or at least I was confident enough it would not harm me. Looking back, I believe now that the way I’ve approached sharing this information had a blind spot. I am a natural skeptic. I work for a company that does cancer and health research. I believe in critical thinking, and in personal freedom. I thought that it would be enough to share information, point people to what I’d found, and let them research and decide for themselves. I still think this is ideal.
But I’ve learned something along the way: there are a tremendous number of people out there who will take advantage of fear and illness for their own personal gain. In trying to allow anyone who read my thoughts the freedom to draw his or her own conclusions, I hope I have never aided such efforts. Let me be clear, now. I believe diet and exercise, even a specialized diet like therapeutic ketosis, is supportive of other medical interventions, and is my responsibility. I do not believe there are conspiracies afoot to hide the cure to my cancer because “someone” wants to make money on expensive treatments. I believe in taking responsibility for doing my part in my treatment, in continuing to learn more and giving myself the best chances I can, in being an active participant in my own care. I have never refused any recommended medical treatment; when I was first diagnosed, the tumour was 2 cm, a WHO grade II, and watchful waiting via MRI for signs of progression was the recommendation from neuro, chemo and radiation oncology. I sought to turn that into “active waiting” by doing what I felt might help in terms of healthy living, and I had three years of normal life, working and travelling, on that program. I invested that time in coming to terms mentally with the situation as well, in internalizing that angst over changes in a future that is fundamentally uncertain, for everyone and by definition, is in fact the paved road to a life of unhappiness.
Finally, and yes, I’ve had these kinds of questions – did my “diet fail”? Did I not do it “good enough”, did I not monitor it closely enough? Would it have been better if I ate a higher percentage of this nutrient or that? I don’t believe that. My tumour progressed to a grade III oligodendroglioma. Untreated brain tumours do that, folks, they’re quite adept at it. What made that happen? I don’t know. No one knows. Just like no one knows why I got a brain tumour in the first place. And I thank folks for their suggestions and concerns on that topic, but to be clear, I don’t spend a lot of time perseverating on these questions. They are somewhat academic to me.
I have written on the frustration I’ve felt at times when I experienced less than I wanted in terms of support from my medical team, in terms of suggestions or directions for what actions I could take in support of their efforts. In closing, in that vein, I want to share that I saw a noticeable shift over the past two years, in terms of response from specialists and healthcare professionals with regard specifically to the ketogenic diet. Some of that was definitely doctors I’ve been with for awhile, and they know what I’m doing, and have observed that I’m not a “flight risk” to go off and refuse what they recommend. I’d like to think I’ve earned a measure of respect there. But I met new people during the past months, and when I mentioned the diet, nurses or specialists would say “yes, that’s good”, or “you like to be in control of outcomes, that’s positive”.
I think that’s positive for all of us.
Image provided courtesy of Dr. D. Fourney.
Added Oct 2, 2015 – here is a link to an interview with CBC Saskatoon on my diagnosis and surgery, live in studio from Oct 1.