Recovery Mode
Recovery Modality
My cousins sent me a T-shirt after my first brain haircut and it describes my modality perfectly: Recovery Mode. Quality recovery from my double brain surgery Christmas special is a prerequisite to everything else I plan on doing and experiencing-- so the focus remains on recovery.
In video gaming terms: I haven’t reached this level before. My second surgery took place three and a half weeks after my first, so I’m experiencing the fourth week of post-surgery recovery for the first time. Some days, it feels like I had brain surgery twice, and my head hurts a bit-- this is normal and it seems pretty reasonable for my head to hurt a bit, right?
My recovery has a lot of things happening in parallel: surgeries, new medications, and major changes in lifestyle. When there’s a new phenomenon, feeling, or sensation, I’m learning not to automatically attribute the new feeling to my diagnosis, medication, or any of the new changes in my life. Correlation is not causation. Nerd emoji.
Example: It’s very easy for me to attribute my sensitivity to sounds to my new diagnosis, but it’s just as possible that I might be a little weary of hearing airplane engine sounds departing and arriving from the airport one mile away.
What I’m experiencing is all normal and recovery is going really well.
Lifestyle
One of my recurring questions in the hospital was “What can I do every day to accelerate my recovery?” and “What lifestyle advice do you have for maximizing my health right now?” I wanted my team to plop a non-fiction book on my lap titled How to Recover from Brain Surgery All Day Every Day but this book doesn’t exist so part of my day is figuring this out for myself. I don’t have this problem solved but I’m chipping away by listening to great mentors, listening to my gut, and feeding my curiosity.
The food we eat, our activity, the thoughts we allow ourselves and our daily experiences must make a difference in recovery. The nuances are hard to prove clinically, and my doctors don’t write scripts for broccoli, but I know that the little things add up so every morning I stuff a blender full of superfoods and make a beautiful green shake for my parents and myself. We visualize the army of micronutrients in the shake “going to work” in our bodies.
Is the shake good for my health? Probably.
Do I think it’s going to make a difference in starving the residual tumor? Maybe, but it can’t hurt.
Is taking action to do one positive thing for yourself first thing every single day good? No doubt.
I try to be mindful of my daily experience, intake and perspective through similar lenses to nudge my lifestyle in the direction of recovery and optimal health.
Recovery takes a village
Some of my recovery is passive: all of the mechanisms of the body and passage of time. Some of it is the intentional actions I take to fuel myself with good food and thoughts. And some of my recovery is the sum of the wonderful experiences and conversations I’m sharing with my community every day. I have the luxury to spend my time flexibly right now and experience the joys of that flexibility with eyes wide open.
Soon after my first return home, I woke up at 4:30 AM and was WIDE awake. My brain was chattering away and wanted to talk about brain cancer. I reminded my brain that we already talked about that the day before and requested that we put that topic in the “parking lot” until the time was right. 4:30 is for sleeping, after all.
My brain didn’t cooperate so I decided to get up, have a coffee and do something productive instead of giving in to the brain chatter. I started to work on a puzzle and a few minutes later my Mom came downstairs. Her brain woke her up at 4:30 too. And there we sat, having coffee, puzzling away and swapping stories about our favorite podcasts at 4:45 in the morning! Together we tried to think of a time that we were both functioning human beings that early in the morning having a wonderful time over coffee. It probably was a first, and we were grateful.
Beyond my nuclear family, I’m thriving on the support and love of my community. My community isn’t new, I’m just immersed in it right now and more aware of my good fortune. My change in circumstance adjusted my daily experiences. My experiences with my community are increasingly potent and enjoyable as I share this story and experience the symbiosis of human connection.
I know many are wondering about my health
I’ll tell you my thoughts on treating my residual brain cancer, and what it's like to make some of those decisions.
The second surgery removed all but a small sliver of the tumor-- the remainder would have been too risky to attempt to remove. Since we didn’t remove all of the tumor, there are a few options to treat the residual disease. We could start with chemo and radiation really soon or we could wait to do that, or we can just do MRI surveillance and spy on the tumor a few times a year. Remember, we’re lucky that this tumor type is a slow grower-- I’ve likely had it for around ten years already. The doctors have to recommend these treatments but explained that I have options.
Just like deciding to have a second surgery, we’re in an empowering but uncertain position. The uncertainty is that there isn’t evidence to prove if doing additional treatment now is better than doing it later. Sure, it would be nice if the treatment options were clear cut and certain like applying pressure to a ruptured artery is-- but that would be too easy. Nobody knows what will work best for me, and nobody is more ready to figure that out than this guy right here. I have the resources, network and desire to go confidently in the direction of individualizing my treatment to maximize my health. I’m not afraid of chemo or radiation, but I’m certainly wary of rushing into it while I’m still recovering.
Now here’s a twist: if we wait, there may be new treatments available that don’t exist yet. We already know about one in the pipeline. Bear with my metaphor: you’re at the cafe for a muffin, and the barista offers you an espresso, but you’re feeling pretty caffeinated from your coffee at home earlier. The barista says, “No pressure, we can make you an espresso later, or any time... and you know what, if you come back even later, we might have a new roast available for you to try-- it’s supposed to be great.” Our situation for additional treatment is a lot like deciding if you should get the espresso.
Let me disclaim: This is an unrealistic metaphor for me because I’ll always go for the espresso. The actual decision at hand is one I’m taking quite seriously-- and whatever we choose, we’ll go in head first. Remember, my cancer is not aggressive and I have the luxury to take time to make my decision. If you want to know more, I’m happy to have the conversation. Many people have reached out to share their experiences and wisdom-- I’m lucky to hear these accounts and learn how to hunt for myself through their mentorship.
The Other Treatment
For now, the focus is honed on recovery from double brain surgery. Going into surgery in great shape and health made a difference-- it’s one of the reasons I could handle two brain surgeries in a 25-day span. I’m focused on recovery and getting stronger now so that if the time comes, whenever that is, I can be physically strong and mentally prepared for chemo and radiation. My vision for the future includes “treatment,” every single day-- my thoughts, experiences, and intake. I think this daily treatment is the most powerful on the market, I can write the prescription for it myself and integrate it into a rich and rewarding life. This treatment feels right.
It’s all coming together as one vision: A life well lived and shared.
Much Love!
CB
