Day 500 - what a craniotomy and lobectomy have taught me

Day 500!

On March 15, 2024, I've reached day 500 since my craniotomy and partial lobectomy surgery to reduce seizures and lower immediate risk from my brain cancer.  I found that keeping my own journal and notes was helpful to me, and later found that sharing my story and thoughts could be helpful for others with brain cancer and those caring for them, or just other people interested in the experiences of others.  I see myself as in a unique and special position of getting to participate and observe as my own damaged brain heals and redevelops, and to use this to expand on years of personal interest in the workings of the human brain.  As I write and as you read, it's important particularly in this post to remember that I'm talking about my experiences which will be quite unique to me so won't apply to all, and will be interpreted from my lived experience and learned knowledge with some influence from what I've read and studied before surgery and in the months afterwards.  This won't be a post with references to literature, instead it's informed by what I've learned from years of intentional introspection and a mix of books, and other resources I've used in decades gone by.  I'll write about specific and new post-surgery sensations and changes, how our internal experiences can sometimes be unfamiliar and where the unfamiliarity can lead to communication gaps and make connections to anticipatory grief and things I have found helpful in getting through it all.

My Left Foot - a story of changed experiences

I start this story with my left foot.  The day after my 12 hour brain surgery, I hadn't yet been out of my hospital bed and it was time for my post-surgery MRI to get some images of my post-surgery brain.  While in the bore of the MRI, I realized that I couldn't feel or move my left foot - it was fully paralyzed, and I felt quickly panicked.  I wrote about this briefly in my surgery and recovery period post, and in the following weeks was able to rebuild partial function with the help of a physiotherapist, TENS device, exercise and focus, but since surgery my left foot has remained numb at the best of times.  The experiences I describe here won't be true for everyone or even many with a brain tumour, but can be somewhat better understood by my surgery experience: I lay on my left side while sedated, allowing access to the right side of my head for the surgery, and my weight was supported along where my sciatic nerve travels from my left foot up through my leg muscles and gluteus maximus.  That nerve then travels up the spine and into the right side of my brain somewhat near the location of my temporal lobe resection site where some significant renovations were underway.

After surgery, I had four solid knots of muscle along my left leg, which we treated with physiotherapy, acupuncture, and TENS sessions.  I regained some of my missing sensation and control as the muscles were loosened allowing for better signaling along the sciatic nerve.  As a non-technical and non-medical explanation, I looked at the problem similar to a cable connectivity problem, where the 'cable' connecting my foot to the right side of my brain was now better able to work, but where the endpoint in the brain was still reeling from the nearby changes as the surgery removed about a half cup of the 'neighbourhood'.  It was going to take time to rebuild all of the connections for different sensors in my foot, and these sensations began pouring in over time.  At first, my foot rocked quickly between feeling fully numb to feeling intense sharp pain, or being hyper-sensitive to the slightest touch which would cause me to jump and yelp with little control.  I considered this all to be a sign of new connections being made amongst and between disrupted nerve endings along the path from toes to brain, and where these new connections just didn't come with the same overall feeling as I had with the now decades-familiar connections.

For close to a year now, I've been able to move the toes on my left foot with a reduced level of control compared to before, and I've had a near-normal level of sensation in my heel with a proprioception in that I can usually tell where my foot is and in what direction it is pointing.  Several months after my surgery and much early healing, I spent a little time in a swimming pool and my foot just felt WEIRD in a way I couldn't understand.  In January this year, I was already a year post-surgery and while travelling I was able to swim in calm waters in the Tasman Sea but when moving my foot to swim, I couldn't make sense of what I was feeling and felt quickly uncomfortable as if something generically bad was about to happen.

A week ago, while traveling again, I was in the water in the Pacific Ocean, on a beach ideal for novice

surfers and anyone who enjoys warm surf on a wonderful sandy beach.  The water flow here was stronger than I'd experienced yet, particularly with the gentle undertow under each wave, giving a strong back-flow over my foot.  My foot quickly gave me a familiar and strong 'pins and needles' sensation but with other sensations that I found difficult to identify.  I couldn't tell if the rest was hot, sharp, electric, prickly, fuzzy, or something else, but it demanded attention and made me feel generally troubled.

My awareness of my left foot quickly seemed to disappear, in that my proprioception wasn't working:  I couldn't tell where my foot or how it was oriented.  As each wave swirled past, the ball of pins and needles with added unfamiliar sensation seemed to swirl around me, now disconnected from my leg.  My best way of explaining:  my foot had disappeared from the end of my leg and a new ball of awkwardness began travelling around me in an erratic path, but sending signals back to me that built to an unignorable sense of impending doom.   I left the water, and the ball of awkwardness came closer to my body as I approached the shore.  I stood in the shade, rocked gently between my feet and wiggled my toes in the sand.  Within what was probably a few minutes, my foot returned to its current typical state:  fuzzy, but with good sensation in my heel, and very much attached to the end of my leg.  I was able to build a hypothesis in a 'hand-wavy', unresearched untested way of thinking about it, but now think that perhaps the sensations of hydrostatic pressure when my foot is submerged is a new sense that hasn't yet re-connected properly.  

With the water rushing past my skin's surface and changing signals as other nerve sensors in my foot experience the higher hydrostatic pressure, I wonder whether these signals were getting 'jumbled' or misinterpreted as they traveled from foot back up the sciatic nerve, spine, and make their way back to the right side of my brain to an area broadly adjacent to the resection site, while firing up my nearby amygdala and its elegant endocrine panic response.  I've been fortunate to be able to watch and observe as my brain has adjusted over the past 500 days: some of the changes have been around how I form and retrieve memories, some around how I understand and use language, and this was to me a great example of changes in physical sensation.  I feel lucky now to understand more how the internal nerve connections our bodies and brains make as we develop greatly influence how we experience, interpret and understand the world around us, both through physical and emotional experiences.

While I was experiencing these unusual sensations, Paul noticed that I wasn't my usual self and he checked in to see if I was OK.  I know enough about my own situation to know when something really isn't OK, and I knew that this was not one of those times, but I didn't yet have a good enough understanding of what was going on to be able to say something like "Don't worry, I've just lost my foot but it's a prickly mess swirling around in the waves and my amygdala is all fired up right now so the sky is falling, but I'm going to be OK." so I probably just said something like "I'm OK, but just want to get out of the water."  It can be hard sometimes to find the words for unusual experiences and I think I know this to be something true of each of us at some time.  It comes down to a level of trust in knowing whether someone we love understands the difference between "OK" and "NOT OK" and that they can be trusted to make the right distinction when the truest answer is somewhere in-between.  Sometimes a simple question about being OK isn't best responded to with binary answers, so I try my best to reframe it such that "not OK" means there's something we need to do something about RIGHT NOW, and that "OK" means somewhere between "I'm perfectly fine, thanks" and "I'll be OK soon, don't worry".  In my case, and with my right temporal lobe impacted, I'm not as quick as I used to be with language so I'll answer with "I'm OK" as a more efficient, concise and honest answer rather than as an attempt to disguise or obscure a more complete answer.  

What I've described above is my unique experience and won't be true of everyone with a brain tumour, brain cancer, or other brain injury or deficit.  I think it's worth thinking of this for anyone in our lives who is experiencing any significant changes.  I think it's true of anyone facing any type of cerebral impact where changes in the brain can change our ability to access and use vocabulary, our experience of senses, memory, emotion, and more, and where new daily experiences might not match the decades of experience in our own bodies and brains in a way that can be deeply jarring.  It's important to reflect that our own individual experiences can differ in unknowable ways, and it helps to talk about this where possible and comfortable, or to at least remember this in moments of interpersonal interaction that just don't seem quite right.  It's an oversimplification, but helpful to remember that "different than 'normal' " doesn't always mean "not OK".

Reframing experiences, anticipatory grief

My experience at the beach briefly left me disappointed that I couldn't enjoy this wonderful chance to play and enjoy the warm surf and sand the way I used to.  I quickly reflected on this in a way that makes sense to me, so that it didn't become only a sad memory of one part of a wonderful vacation, as it would have been easy to grieve this one part of what I've already lost.

I feel lucky in that I've long understood that the way we talk about things impacts the way we feel about things.  The choice of words we use to describe something to others shapes our memory of it and our feelings about it.  I understand we are wired to pay attention to negatives and potential harm, to the benefit of our future survival, but the natural selection processes that helped humans hone this skill over millennia didn't care much about our emotional state or well-being as long as we were just alive.  For at least a couple of decades, I have insisted that when I find negatives in the way I recount a situation or experience, I must identify a comparable list of positives. I ask myself which of the list is most helpful to me: which items in my list help me survive physically and emotionally, which are the most useful to carry with me?  With brain cancer, it's easy to grieve the small losses already experienced and to begin grieving anticipated future loss of function.  This anticipatory grief is normal and natural, so I don't want to ignore it, but it's personally important to remind myself that my experience is much more than just my losses. 

In the case of the beach and not being able to enjoy it the way I once did, I reframed it like this:  I was disappointed that I couldn't enjoy jumping and playing in the surf the way I'm so familiar with, so I then insisted that I review more fully.  This led me to think things like: "Gosh, I enjoy a beautiful beach with the sound and smell of the surf, and I'm on vacation!"  I'm also careful to avoid the temptation to switch my focus to only the positive as a means of replacing my disappointment with a positive perspective, as it would create an incomplete picture which I to me will be less valuable and useful to me than the richer complete picture.  I feel that only holding on to the positive experiences will leave me with unreasonable future expectations that will be difficult to meet, increasing the likelihood that the strength of future disappointment will grow when compared to a history of only positive memories.

If I go to a restaurant and see on the menu there's a daily special that I've never tried but think I would really enjoy, I might be disappointed to hear that they've just sold out, but I'll choose another dish that I know I enjoy.  If a friend were to ask me about my experience, I think it's more useful to them if I mention the daily special that sounded so appetizing, but I was too late for, and how much I enjoyed the dish I ordered.  My friend now can plan their own visit to the restaurant with more information, and with a clearer expectation from my more complete description than if I had only mentioned the missed special or the dish I did have.

Analogies and metaphors like this wear thin, but by writing it in my blog I hope it's going to be useful to me as I re-read occasionally and remind myself, and I hope might be helpful for at least one person who has read this far, so here's another.  If I want to have a nice hot bath to relax on a cold winter day, I want to use both the hot and cold water.  Focusing on one only isn't useful or helpful to me.  It's a thin illustration of how I've built my internal focus and practices around a richer and more complete story complete with positives and negatives instead of allowing me to naturally focus on negative experiences or falsely ignoring them and replacing them only with the positive.

I'm intent on doing this and insist this of myself, but it has come with decades of practice and a stubborn insistence and belief that this is more helpful and useful to me in the long run.  It's not a guarantee, but my lived experience to-date tells me I'm already capturing some of the rewards from curating this mindset, and that odds are still good that I'll continue to benefit from a richer and more complete story as it continues.  

At day 500 after my craniotomy and lobectomy, I still find myself in awe that my new experiences keep teaching me not just about myself, but what I believe are broader themes of what it means to be human and to have human experiences.  I hope as you've read along that you've found something useful or interesting along the way.  

Thank for reading along and sharing in my story!