Life is not the adventure you signed up for.

On the morning of March 10th, Angel and I had been planning our trip on the Pacific Crest Trail for approximately 18 months, and until about 1 pm that day, our trip was set to commence on April 19th.  Tickets bought, permits obtained, gear kind of packed.

That morning I was wasting time on Facebook prior to work when my friend Erin Earle posted about having the Kanye West song "Only One" stuck in her head.  I like the song, and almost posted a comment about Kanye being the only person who could possibly sing that - a simultaneously touching and narcissistic song that is meant to be a love letter from his dead mother to Kanye himself, about how amazing she thinks Kanye is and how much she believes in him.



I didn't post the comment, but it was the first thing I thought about when my sister sent me a text that I got from the floor of the psychiatric unit I work on, saying that my dad had collapsed at work and was seizing, and was on his way to the hospital. The refrain from the song ("Tell Nori about me"), sung from Grandma via Kanye to Grandson, has been stuck in my head for two weeks now.

After talking to my wife, sister and mom, I was leaving work, walking home in tears, and wondering what was next.  By that night at midnight I was on a plane back to Ohio only knowing, basically, that they had stopped the seizures, but that dad was under sedation and on a ventilator in the ICU at the University of Cincinnati Medical Center.  

For some reason, the PCT Facebook page has an unusually large number of trolls, so anyone who posts there can expect to get at least a couple negative comments on just about any subject.  That's an issue for a different post, but the notable thing here is that the trolls save their most intense vitriol for hikers who they deem to be influenced by the book or (especially) movie Wild.  Maybe in part because of that, and in part because I don't want people to think I'm a poser, I'd been at pains for months to make people aware that I wasn't doing the PCT because of Wild

Wild is about a lot of things, but at the core it's a story about a child whose PCT hike allows them to cope with the loss of a parent.  The specter of Wild made the flight home ominous.

Reorientation

New onset seizures don't happen in 61 year old adults for benign reasons, and shortly after getting to the hospital following a rough couple hours sleep on the redeye from Seattle to Dallas, and the puddle jump from Dallas to Cincinnati, the neurosurgery resident told us that the suspicion following MRI was glioblastoma.  Or, malignant, aggressive brain cancer.  Left Frontal Lobe, operable, prognosis 1 - 2 years for most people.  Longer if you're healthy and lucky. 

Two surreal days later dad was in recovery following brain surgery, with a new Frankenstein scar on his forehead and a comical post-surgery Three Stooges haircut. His new plan was radiation and chemo, and maximizing the time he has left.

I wouldn't know because it hasn't happened to me, but you hear a lot about how having a kid reorients your entire life.  Also, in my experience, having a parent with a terminal diagnosis reorients your entire life.  The focus for the family shifted from doing our own thing to figuring out how to help dad maximize the life that he has left - both in quantity and quality.

Mom and Dad had literally been mid-move to Las Vegas when Dad collapsed.  An offer is in on a house in Vegas, and Mom had already made the move out and was living with my sister.  Dad was finishing up at work for a few months, and would be there by summer.  It was the biggest adventure mom and dad had ever planned - they wanted to be with their grandkids during their golden years, and it was the first move outside of Ohio in their 61 years of life, and the culmination of several years of hard work and an ongoing struggle to sell their house in Camden, which they'd lived in for nearly 40 years, and which closed in November.

Everything in the last two weeks - in my life, my siblings lives, and the lives of everyone in the family - has been focused on not letting cancer screw up Mom and Dad's plan.  (One of the advantages of being the nicest people ever - as my parents are - is that when something bad happens to you people genuinely want to help, and will insist on doing so.)

Dad is enrolled in a research study to receive a really hopeful experimental treatment that looks like it could drastically increase his chances of living to a normal life expectancy (9 years will put him at 70) - the Phase III DCVax study.  UC was a study sight, but the closest study sight to Las Vegas was in LA.  So, we've worked to establish care with an oncologist at the City of Hope Medical Center in Duarte, east of LA.  He'll be back and forth from Vegas to there regularly, and will also receive radiation treatment in Vegas.  Insurance seems to be sorted, the oncologist he'll be working with looks like a smart young hotshot, and we have found some resources through the American Cancer Society in Vegas that look really top notch.  The last bit of his treatment in Cincy will happen on April 1, and it will be out west on a plane after that - joining the grandkids 2 months earlier than expected. 

I can type that paragraph because my family as a whole reoriented our lives towards Dad's health, and spent day and night working on logistics during the last few weeks. Adventures in brain surgery, radiation, chemotherapy, and bureaucratic health care industry nightmares. 

Throughout the whole process, the thought kept entering my head that "This is not the adventure I signed up for."

Ob-La-Di Ob-La-Da

The first days post-surgery all of us had tunnel vision focused on maximizing Dad's life, but for me the first glimpse that my own life would also go on came when I floated the idea to my mom that I would consider cancelling our hike if they needed me to.  Her response was,

"Never ever ever under any circumstances will you do that!"

So, I didn't, and I set about figuring out logistics of how to make everything happen that needed to.  I called my work, and decided that I wouldn't be going back.  That sucked more than it would have at other times in my life, because I love my job and the people I work with.  I talked to Angel and we agreed that we would join my parents in Vegas to help them navigate care and get settled at the beginning of April.  And I came home to Seattle and set about trying to accomplish a month's work in a week and a half to get everything ready to leave - renting the condo, packing up, getting gear together, cleaning, forwarding mail, saying goodbyes. 

The PCT had previously been a thing that was happening in the context of a big adventurous stage of life - it was the start of a period in which we would be traveling for at least a year, testing our resourcefulness, seeing places we hadn't, learning about ourselves, and just generally living.  After dad's diagnosis, the PCT became a thing that was happening in the context of cancer treatments and life or death issues. A heavy Last Days event - whether those days are a year or 10 years. April 1 became the new departure date - for Vegas, and the PCT would happen in its time.

Re-Reorientation

But the PCT isn't a Last Days event (any more than the rest of life is).

Before coffee on Sunday morning, Angel and I got into a minor squabble about how and when we would book tickets to meet my parents.  My concern was maximizing flexibility so we could join as soon as they get out for their as-yet-to-be-scheduled first oncology appointment.  Her concern was on minimizing any unnecessary financial hits at a time when everyone is thinking about money.  

After coffee we drove out to Mt Si to join a friend for a much-needed hike.  We didn't talk much, not having come to agreement about tickets to Vegas.  It's a hill that I've climbed at least 20 times now, so it feels a lot like home.  It was rainy and miserable, which also feels like home.

On the way up the hill, I talked about what was happening with our friend Kelly, who was a perfect sounding board.  Her mother had a similar terminal diagnosis, and she passed on a lesson she had learned - that parents do not want to see their children sacrificing happiness for their sake.  My dad has never let me buy him dinner, even when I've been in a much better situation financially than him. 

As I'd been processing life and the PCT, post-diagnosis, my feeling was that maximizing Dad's life would mean sacrificing what I want to do in my own.  But pre-diagnosis, I was thinking about the next stage of my life as a growth opportunity. To pull a Kanye and quote myself from a recent post,

Beyond just wanting to be on vacation all of the time, traveling this year (and maybe beyond), is about trying to figure out how to prioritize the things that are important to us...  Our priorities in some random order include: meaningful and beneficial work, outdoor adventures, close relationships, a sense of home, seeing as much as we can, learning as much as we can.  We've spent 10 years or so hammering away at debt, investing, buying and remodeling a home, changing careers, and trying to put ourselves in a position of some professional and financial flexibility.  What that adds up to at this point is a chance to try to move the balance away from career a little bit and more towards life.
Walking ahead of Kelly and Angel on the way down Mt. Si, Kelly's wisdom brought that idea back, and it clicked that nothing really has changed with that goal.  The activities will change and the priority in focus now is family, so we'll likely spend a bunch of time in Vegas as opposed to some other options, but balancing things out towards life is still the goal. 

Pragmatically, that meant that after the hike I talked to Angel about driving to Vegas rather than flying, so we could both save money and road trip through a big swath of America that neither of us have seen.  Psychologically, it meant that a lot of my own depression about what all this means lifted. 

Terminal cancer will change some of the decisions that we make in the next few years, but working to maximize another person's life doesn't mean taking anything away from your own (I think parents typically understand this.)

And dammit, this shitty brain tumor adventure isn't what any of us signed up for, but that doesn't mean we have to stop looking at it as an adventure, and trying to live into everything that cliche term represents – a chance to figure out what we’re made of, experience aspects of life that are scary and unnerving, open ourselves to being changed by realities of the world that we hadn’t previously considered, packing everything we can into the time that you have left, and telling the story so others can learn from it too. 

And despite wanting to distance myself from Wild’s ‘loss of parent’ motif, adventure is about mortality. It inherently involves risks, and those risks teach you how to live.  Committing to it is committing to the goal of not letting dying stop you from living while you’re still here.

Comments

nrmrvrk said…
Have you read/seen/heard of the book "Shrinkage" by Bryan Bishop? It's about his experiences living with a Glioma on his brain stem (inoperable). It's a good read.
Best of luck with your future endeavors. Thanks for sharing your life through this blog. I enjoy reading it.
All the best Tim (and Angel)! I have been reminded of your last sentence more than once already in my life and no doubt will need be reminded again in the future. I'm glad you are still going to hike the PCT.
Anonymous said…
This just proves once again that 'bad' things happen to good people; too! Tim / Angel, keep your collective spirits up and everything will transpire just as it should. I don't know either of you intimatently or as well as I'd like but I've had enough encounter to avow - dang, that Tim and Angel are good peeps'!! Truly sorry for your current situation. Certain you'll make lemonade the best way possible. 8 Ball predicts - the PCT adventure of a lifetime - Yol bosun! Thank you for sharing.
Tiffany H said…
Loved this post, Tim. I really am hoping for the best for you and angel and your dad and all the rest of your family. Sending positive thoughts your way and wishing you guys the most fulfilling adventure you could have dreamed of! Looking forward to following your journey!

-Tiffany H

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