It was months ago when I saw my oncologist last, when I came to his office for a followup appointment regarding my latest surgery. It couldn’t have been but only 2 months after January when he went in to try and get the cancer again. After so many years of treatment, surgeries and appointments, the apprehension I have with these appointments is almost entirely gone, the expectations of any specific outcome as well. Still, I had come back from the last surgery so quickly, and that being after a year and a half of no chemo and only continuous running progression, that the surgery seemed a mere annoying interruption, which I can probably only safely say from this distance now. It’s never simply an annoyance or basic interruption. It’s a whole lot of hell really. And yet, it’s always the surgeries that hit me the hardest, not the cancer. I still have cancer, of course, but it’s weird. It seems I only have the actual definition to reference and not some sort of physical hindrance caused by the tumors or growth. Any physical destruction or obstacle at this point is, I believe, a leftover from the year and a half of chemotherapy and the three surgeries I needed to have performed. The effects are very real and are with me daily, but they are now almost bodily aberrations that I relate to as if I’ve had them since birth. Cancer is something more distant, if a concern at all. It’s something that may or may not become more immediate down the line, or maybe that’s my naiveté speaking. But I still have the surgeries and I still have the followups.
So when I had the appointment with my oncologist, in the back of my mind I was thinking, “Maybe he’ll say I’m good for as long as I can be good now. Maybe he’ll say chemotherapy and surgery won’t ever be an issue unless they have to be an issue and I can get back to my life again.” Against all the lessons I’ve taught myself about expectations over the past three years, I found myself daydreaming again.
The appointment was the usual. He checked the incision scar that runs from the point where my rib cages come together down to the middle of my pubic bone (any further and I’d be cut in two). He felt around my abdomen, cupped his hand on the areas where he did the most extraction and tapped on the back to listen to the sound, whether it reverberated hollow or solid. I had difficulty sitting upright again, but when I did, we got to talking about the future. I tried to fight the smallness that starts to overcome me in the exam room.
At this point I don’t remember all the specifics of our conversation, but I believe they were about the growth of the cancer, the details of the procedure, and other logistics. What I wanted to know, however, was our plan from here on out. With the same pleasant and casual tone he always delivers my diagnosis he told me we will have another scan in a few months and then look into going back into a surgery for the 4th time in about a year and a half or two.
My heart sunk a bit, but I managed to gather some courage at the proclamation of “..or two”.
I found my way past the smallness and responded, “You know, I was coming into this with the best case scenario being 3 to 5 years of no surgery. Not that this consideration is the most important, but it’s so hard to plan my life and live normally with these surgeries. I need to get back to work and take care of my son and just try to get some routine together.”
And before I could vaguely plead my case further he cut me off.
“Ok, let’s make it three years. As we’ve said in the past, you keep breaking the rules. So let’s make a plan for three years and I really think you should live your life as normal as possible. Get back to work and just live as if you don’t have cancer.”
I followed, “And so I have another scan in 3 months then?”
“Let’s make it 9. We’ll do a scan in 9 months, see where you’re at, and then plan from there, but we’ll make 3 years our next goal date.”
And with a few more specifics worked out, that’s where we left it. The plan as such being, a scan in 9 months, a goal date of 3 years for the next surgery, and any necessary adjustments made along the way. If we’re nearing three years and I start having complications, we’ll move the surgery up. If we get to three years and everything is as stable as always, we’ll push it back even further.
I drove home and found myself in the emotional space I did when I was first diagnosed, driving down the highway surrounded by all the other cars, but registering very little except the calm in my mind. Something of a weight had been lifted, but I wasn’t sure how to process it just yet. It’s a tenuous lifting, but I felt lighter no less. I was given the permission to live my life, to get back to work, to think of the future without surgeries, as far as I dared. And with that lightness and, almost positivity, almost hope, consuming me, I wasn’t sure what to do. I felt like I needed to tell someone, to go somewhere public, to just sit and feel that for awhile…but I drove home.
I drove home because it felt wrong to celebrate. It felt dangerous to celebrate, with all I’ve come to know over the past three years about plans and expectations crushed. I wanted to acknowledge this change, but I didn’t want to flaunt it. That felt too dangerous, to arrogant.
I just needed to get back to living…but what did that mean anymore?
Three years is not a long time, unless you have cancer. Three years, to me, seems so incredibly long ago, but I hear about people dying from cancer after battling it for 5 or 8 or 10 years. And to me, those timelines seem so short. I think about how I just heard about them getting cancer and then suddenly they were gone…and I’m only three years in. And yet, in that three years, so much has changed. I lost so much and also gained so much. I was forced to stop working for others and expand my design skills in so far as I could just make ends meet for myself. The routine of my days changed. I became financially ruined and had to rely more and more on government support. The only thing that didn’t change was my running really.
So what exactly do I do with the same timeline stretched out before me that mirrored the timeline I spent battling cancer directly?
Transitions are hard and most often we seek comfort and security in the familiar. It takes a certain personality to embrace the terror of change openly and with positivity, and not resort to the compromises made in similarity. I like to believe I’m in the former category.
And yet, the last three years are being solidified as some sort of pause in my pre-diagnosis life. The first thing I did after being given the go ahead to live my life was to start looking for a job, and with some small delay, I ended up back at the job I had to quit upon diagnosis. It was like picking up right where I left off. That job even dictates my daily routine, as it was. Get up and run, prepare for work, ride my bike to work, ride my bike home, relax with TV, and do it all again the next day. The way I eat is the same, the bags I carry, the work I do, the radio programs I listen to, and so on. The last three years have been a pause. I mean, a painful, scary, exciting, physically destructive pause. And really, not a pause at all, but it’s fun to think that way.
Not everything is the same, of course. My running abilities will never find their way back to pre-diagnosis standards, but that’s ok. And I’ve found love with a wonderful woman who supports me through all my difficulties (and puts up with the worst of my traits) and I get to reciprocate as much as I can muster. And I started gardening, like heavily. Some parts of the free time I found within the last three years allowed me to open up new interests for myself, so it has been great to keep expanding on those within the restrictions I have in my new routines.
But those are all very simplified examples. It’s really quite an experience to walk the line of great fear in the face of your mortality and yet also be afforded the privilege of living a life free of some of the daily restriction we find in the normal day to day. I’ve talked in the past of feeling a sense of liberation after diagnosis, of being able to shed all the excess burdens and responsibilities we often have forced upon us, and of those I foisted upon myself. The running and training expectations, the budgets, the time restrictions, and so on. It’s all so much to handle sometimes, especially for those in poverty, so it wasn’t lost on me that I was living something of a delusion and high privilege the past three years, by being supported through fundraisers, government assistance, and cobbling together design work. I had the privilege of self-directed days, time with my son that wasn’t hampered by work schedules, and the luxury of taking it easy when I just couldn’t muster the drive to keep pushing through all the burdens.
And that is, with a tense mix of difficulty and satisfaction, gone now. That privilege is removed as I enter the work world again, lose more and more of my government assistance (partial disclosure, not all of it, of course), and must now juggle again the responsibilities of providing for everything economically, re-contributing child support (truly, my greatest relief in this matter), parenting my son with new time restrictions, and figure out the best life to live in the midst of all of this.
Transitioning out of three years of living against cancer into three years of ignoring cancer isn’t as hopeful and liberating as some might imagine. There is still a distinct tension that marks my days, of not completely emotionally letting go. The oncologist didn’t say, “You no longer have cancer! Go forth!” He said, “We’ll try for another three years.” There is a massive gap between those two statements, so transitioning so abruptly into living from surgery to surgery into a normative routine is proving to have it’s own gap. I’m trying, with difficulty, to plan further ahead, to imagine the best life for myself and Laura and August, but while also determining what is most important in the now. It’s so easy to become self-absorbed in the face of cancer (more so than I already was) and so I’m trying to move away from a deep selfishness and put more focus upon others, upon the issues that truly matter in our day and age, to reconsider radical politics with the newfound perspective of the last three years, and to find the most valuable place to put my own action. Admittedly, I have no idea what to do at this point, and that seems to be another point of tension in my transition.
Maybe it’s just too early to make any specific plans for myself right now. Maybe it takes getting used to the new old routine, with the new perspective, to really find my way. It’s hard when you’ve spent three years really wrestling with the deepest, individual attempts at living the good life. It almost makes everything else pale in comparison and the excitement and value I once found in projects pre-diagnosis have lost a bit of their shine. I can’t tell if I was naive back then or am more broken now. I don’t want to imagine it’s either.
We often want to believe we can make our own decisions, calculate the risks and rewards and ease the transitions of our lives to our greatest benefit, but sometimes it just doesn’t work that way. Sometimes life transitions for you, and when you get used to that new routine, it transitions again. I guess the success is in managing the transitions in the moment, finding your comfort within them, and being prepared to find that comfort again should another transition find you again. And maybe it just takes time to readjust…that’s what I keep telling myself.
With that said, running has been my constant, as much as I may try to shake it’s obsessive burden from time to time. The transitions for my running will have to be detailed in another post, but I do need to give time to my latest running project.
This August I will be running a route that a friend has titled Circle Takes The Square. That is a 50+ mile route from the circle of downtown Indianapolis to the square of downtown Bloomington. When I was planning my run down the state last year, this portion was my most anticipated as I have ridden the distance many times, but always wanted to run it, though never did. Initially, I committed to just doing this route, myself, without fanfare and without obligation, but I’ve found it harder and harder to do anything for my own needs without using it in some way to benefit others, so with that in mind some friends and I created the Ethan Runnels Stay Wild scholarship.
Ethan was a friend of mine who lost his life to the White River in 2009 and who was the vision for the White Pine Wilderness Academy, of which I am a part. The camps we host for children (and adults) are nothing short of transformative and we want to make them available to everyone, despite financial restrictions. In that recognition we have set up a scholarship to help pay for kids to attend our camps, free of charge. The Circle Takes The Square run is being conducted in this spirit and to help promote the scholarship. If you can afford the contribution, please consider donating to our fund of which we are seeking a $5000 goal, which will secure camp registration for over 22 kids. The details of the scholarship can be found on our gofundme page here –
In the meantime, a handful of us are training ourselves to run the 50 mile distance on Sunday, August 21st. If you would like more information about the scholarship, academy, or the run, please get in touch. Thanks for being awesome.