I’ve known since May that I would be having brain surgery to remove as much of my brain tumour as possible. I’ve been fortunate to be seeing my rockstar surgeon (let’s call him Dr. F) for three years, since diagnosis, as we watched it for signs of progression. When we saw growth on my spring 2015 scan, he said “now is the time. A great deal of determining outcome will depend on how good you are going in, and you’re very healthy”. When it was finally determined that the surgical approach would be awake craniotomy, I asked Dr. F what I could do to prepare. He said “rest and eat well”. I thought that sounded like a good start.
Here’s what else I did.
First, I downloaded articles on awake craniotomy approaches and patient experiences. I wanted to be able to visualize what would happen, how it would feel, what my role would be. I benefited from an excellent pre-admission program at the hospital, where staff answered any questions and I got time with an anesthesiologist expert in awake procedures, who explained very well to me what would be involved. The communicator in me appreciated playing the observer in the meeting, where I could see what his key messages clearly were, and what that told me people must be most concerned about. He emphasized that I would feel no pain, and described that most of the structures (skull, brain tissue) do not have pain receptors, and that local anaesthetic would be used for the incision. He talked also about the part of the procedure where the skull would be opened, that I would hear the saw and feel the vibrations of it. He explained that there would be mild sedation using an arterial IV that could be quickly adjusted and fine-tuned at any given moment, up or down throughout the four hour surgery. He emphasized that there are times where a patient becomes upset and that the procedure can easily be modified to general anesthetic if necessary, and that this is not a matter for embarrassment, just a natural response sometimes and that in the same way there is no heroism expected.
I’ve taken up meditation over the past year; if you want my favourite reference, for what it’s worth, I rely on Full Catastrophe Living by Jon Kabat-Zinn. It focuses on the renowned “Mindfulness Based Stress Reduction” program pioneered by Kabat-Zinn over 25 years ago at the University of Massachusetts Medical School. The clinical and healthcare setting appeals to me. So, that was another line of preparation. I increased my focus on breathing and relaxation techniques and imagined using them in the operating room. I have a favourite meditation target that I use sometimes as a visual focus, it’s a photographic artwork done and gifted to me by my mother’s cousin. It facilitates a mental walking meditation for me; I walk with (or as) this boy around the infinity symbol, picturing where I am on it, how I breathe with each movement, the feel of the sand beneath bare feet, the smells, the quality of the air, the sounds I hear. I practiced that a lot, knowing that I could take that picture in my mind’s eye into the OR and access it freely.
I prepared at work, expecting to be away for 8 to 12 weeks for recovery, with the eye of a project manager. A bit of an aside – about a month before surgery, I participated in one of those executive personality appraisals. One section of the report I got back was openly critical of my responses, essentially stating that I had clearly gamed the assessment because my scores on “attention style” were so off the chart. The report said (I paraphrase) that it appeared as if I am someone who can examine the big picture of a situation, make a plan and strategic direction and adjust that strategy based on changes to the big picture, and then also focus on the details of execution of the plan, and adeptly switch between those attention styles seemingly at will. I laughed aloud when I read that and wondered if the assessor would like to follow me around for a week at work. Suffice to say, my workplace preparation involved some lists and delegation and generous support from colleagues. And here’s a secret I learned over the past three years – you can call me VP (I prefer veep), but I am not really as important as I imagine. People get things done without me, the world still turns, and the greatest risk is probably that everyone will see how well it does. I joke, but really, I think we can all afford to step back and let others do.
I also prepared with busy work. Friends have observed this was probably some anxiety showing through, which I can’t argue. I have never had such a productive season of fall clearing out. I purged closets, decluttered, scrubbed and tidied. I made and froze an enormous batch of bone broth that my husband calls my “potion”, which required three days of simmering bones and assorted veg in a giant electric roaster in our garage. I nested, really. Part of me thought that if I was laid up in the house with some post-surgical complications, I didn’t want to be thinking “why on earth did I not wash these windows???” Part of me honestly thought that you never really know what could happen, and maybe I’d help whoever had to clean out my shoe closet if I didn’t come home. True story. I also did the responsible things, making sure finances, bills, wills, insurance forms, etc. were in order. I wrote down passwords (what if they cook my nines? Man with Two Brains, anyone?).
And I did what Dr. F suggested. I rested. I ate well. I focused on my ketogenic diet, with the thinking that its benefits would hopefully help me be strong through the surgery and recovery, and that when he got his hands in there, I hoped for clean resection, knowing that studies have shown more defined tumours in animal models with ketogenic feed.
Two days before the surgery, my brother arrived from out of town, having reserved the head shaving honours. I was excited about that, I spent time visualizing all the badass bald chicks I would resemble. I bragged that I would not need a hat or wig, because I would WEAR MY HEAD, everyone has one! Sidebar – no one told me how cold you get with no hair, so some of that bravado has faded. When I was rinsing my new stubbly head in the bathroom, I heard the clippers still running and looked out to see my mother in the chair, her scalp already showing. My husband went next. My sister-in-law arrived the next day. My posse, in place.
Finally, what I asked my posse was this: help me feed the calm. There will be nerves, scary things, we can’t avoid them. But we can chose what we feed. Let’s feed the calm. I was put in mind of a tearful and emotional scene, me being escorted off through big swinging doors to the OR, with loved ones hugging me and clutching my hands. I told my team – that’s not reality, that’s a movie we saw. This will be as dramatic as we make it, and I have a job to do inside that OR too. Help me be ready.
When I saw Dr. F. the morning of the surgery, he looked at my shaved head and said “hey, you started without me”. I said “I’m ready, I feel calm”. He said “me too”.
Image credit Kevin Kelly, not for other use, used with permission.
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.