ignorant bliss
what happens when scan results aren't as expected
Waiting for results between scans is a special kind of hell I wouldn’t wish upon anyone. Where I live, we don’t have an online health portal to check our records or results on our own, and we also have massive wait times to see our respective doctors. All of this combined usually results in a two to three-week waiting period between actually getting my CT scan, and getting the results from it. Two to three weeks of sitting on my hands, knowing that somewhere, someone has seen my insides through a scanner and determined if I’m sick again, and all I can do is wait.
For reference, I go through this special-CT-scan-induced-hell every three months to see if my Osteosarcoma has decided to get the band back together. For many reasons beyond my desire for knowledge, my specific type of cancer usually reoccurs in the lungs before popping up anywhere else. It’s a strange concept, that bone cancer can return not in the bones, but through the past few years I’ve realized that unfortunately, our bodies are strange and sometimes it’s worse for my brain to know exactly why.
I’ve talked about the waiting period at length with other cancer survivors, and the collective agreeance is that waiting is the worst part of cancer; treatment and beyond. It’s strange to count down the days until you find out if you’re going to relive the worst day of your life. It’s eerie to laugh with your friends over dinner and drinks, knowing that the week following, you could be crammed into a treatment room and return to your sickest form. It’s exhausting to put effort into future plans when you could have to cancel them immediately. There’s a term common in the cancer community called “scanxiety”, which describes the feeling incredibly well. This feeling echoes the trepidation felt in high school classrooms while waiting for exam grades. What’s done is done, you can’t do anything to change it, and that fact almost makes it worse.
Most recently, on March 1st, I had my 5th follow-up scan, roughly 15 months after finishing treatment. Scan day came and went, and for two weeks, I did what I am still trying to master: being a patient patient. I’ve settled on a coping mechanism that I feel is healthy; indulging in a little bit of ignorant bliss. Pretending everything is fine all the time is unhealthy, unsustainable, and exhausting, but pretending that everything is fine for two weeks is practical. No amount of worrying is going to change what the cells in my body have decided to do. No amount of nervous energy will zap a recurrence into remission. I usually despise toxic positivity, but this is a very unique situation in which I think that it may be the only way to survive. I can’t help but think that I would be so incredibly pissed off at myself for spending the two-week wait in shambles if I was sick since the two weeks between the scan and results could be the last normal two weeks I have before shit hits the fan again.
It all feels very dramatic, too. As much as I could receive the worst news of my life again, I could also walk into the appointment and be told my scan is clear. I could then discuss my lingering side effects and treatments for them with my oncologist, update her on my personal life, and leave her office to enjoy the early spring sun. I could live a wonderfully mundane day after all of the anxiety leading up to it. I could go home, tell my loved ones I’m still cancer-free, crash on the couch with a cat and have a cozy and comfortable night in.
So I try my best to play pretend, letting the anxiety come and go with a simple acknowledgement that it is there, and live my life as normally as possible until I am told that I need to do otherwise. It’s much easier said than done, and I am by no means perfect at it, but I’m trying my best and getting better at it as each scan goes by.
The morning of results day is usually the hardest. No matter how logical my brain feels, my body reminds me constantly that I’m about to walk into a room and find out if I have cancer again. I go through the motions, making coffee, taking my medications, showering, doing my makeup and feeding the cats, all while thinking that this may be the last time I do any of these mundane tasks “normally”, with no knowledge of any potential sickness.
On March 14th, I went about my morning, and made my way to the cancer centre with Edward in the mid-afternoon, hoping that everything could continue to be fine. Every time I go in for results, I have a feeling in my gut that something is wrong, and every time, nothing is- the feeling ends up being no more than an anxious knot in my stomach with no meaning.
This time was unfortunately different.
“There’s something new in your right lung since your scan in December”, my oncologist said after sitting down on her stool next to me.
I took a deep breath, expecting it to feel different, expecting it to feel like there was a marble floating around in my chest. The air felt shockingly familiar, and the situation did too. This wasn’t the first time a new nodule, bump or lump had popped up since I finished treatment, but this was the first time it looked like a recurrence could be happening in a typical way.
“Have you been sick?”
I shook my head, knowing that it had been nearly a year since my last cold. Lung nodules can pop up as a result of a lingering infection, or even scar tissue from coughing, but that couldn’t be the case this time.
“Okay, well, it could still be nothing. Sometimes these things do go away on their own. It’s small, so we’re just being cautious. We’ll do another scan sooner than your next scheduled one to check up on it and see if it’s grown”.
After some more talk about the logistics of harbouring a 4mm potential tumour in my body, we discussed the rest of my side effects, insurance paperwork and referrals I needed. I left her office with my scan report in hand, knowing I’d be right back in that room in May to find out if I’d be starting treatment again.
The tears started almost immediately once we reached the elevators, and came on pretty steadily once we’d made it outside of the building. It never feels good to be the one crying in front of the cancer centre, but nobody looks at you strangely when it happens. There is an understanding between almost everyone in that building that good news does not often come out of time spent there. I buried my face in Edward’s chest and bawled my eyes out, trying to find the words to describe the horrible sense of dread running through my veins, the way that the air felt stale with every breath, and the way that none of this felt real. The best I could choke out was “I want to go home”, between staggered breaths.
His response offered a better option than moping at home in a dark bedroom- happy hour at the Mexican restaurant near the cancer centre, and booking a same-day appointment with my therapist for when we got home. What I can I say, we seem to have our coping mechanisms for this shit down pat.
A few days passed after I got my results back, and I found myself carrying my scan report around like a child with a security blanket, the paper crumpling more and more each day. It took a few days for my brain to register that this wasn’t some terrible nightmare. I spent every minute wondering when I was going to wake up, and when the camera crews were going to pop out of the bushes and tell me I’d been punked. Nothing felt real, and I floated through life feeling everything and nothing all at the same time.
Over the past few weeks, I’ve kept those two sheets of paper close, and I’m not entirely sure why. It’s not like I’m forgetting that this is happening to me- I have friends and family checking in on me frequently. I think I’m hoping I’ve read something incorrectly, skimming the scan report over and over again to see if there’s anything I’ve missed. As the days pass, I come to terms more and more with what’s happening.
First of all, I could be sick again. I could need chemotherapy again. I could need an invasive surgery again. Although unlikely due to the small size and early stage of catching this freeloading bump, I could come close to dying again. These facts are scary, to say the least, and I would be remiss if I did not admit that I am scared shitless at the possibility of facing treatment again. My brain and body alike are tired and irreversibly scarred from the first round, and I am nervous that a second round of treatment will do even more damage.
Second of all, there’s no right way for me to handle this. I feel like societally, I should keep this to myself since it’s personal health information that doesn’t have any concrete results. On the other hand, that has never once stopped me before. There have been more times than I can count that I or other cancer friends have had a scan or biopsy show something suspicious, that we hide until we have tangible answers for fear of appearing dramatic or worrying our loved ones. It’s terrifying to share information like this when we have more questions than answers, and it can be hard to answer the same questions repeatedly with the same reply of “I don’t know”. Despite the fear, it feels right to put this information out there. I don’t have to hide it. I don’t have to stop sharing my current writing for months to shield the world from the fact that I may be sick again. Selfishly, if I have to deal with this information, I will not be doing it alone. It’s too hard.
Third of all, my time is limited. Everyone’s is. I’ve spent the last few weeks slingshotting between being terrified and soul-crushingly depressed, to being more grateful for life and the people surrounding me than I thought I ever could be. I’ve come to realize that I can’t live these next two months scared and running myself in anxious circles about whether or not the pencil-eraser-sized nodule in my lungs is going to kill me. I’ve chosen to adopt the same mindset that I do in the two-week waiting period for scan results- indulging in ignorant bliss. I don’t want to spend these next two months assuming and living as if I am already sick, and I don’t want the people in my life to do so either.
I want to catch up with friends on sunny patios without mentioning my health. I want to spend Saturday nights curled up on the couch with Edward playing a silly video game. I want to get out in the early spring sun and go for slow, indulgent walks. I want to write without worrying if what I produce is perfect. I feel like there’s been a fire lit under my ass to live as fully as I possibly can, not only because these may be the last two relatively normal months I have for a while, but because I want to. I have so much to live for and appreciate while I’m still here.
So, I’ll play the waiting game and go on with my life as usual until I am told to do otherwise. I will enjoy every sip of coffee, every breath of fresh air, and every laughing fit with friends out of pure spite against my body potentially trying to kill me again. I will be bold and all-embracing of what life throws at me. I will admit when I am scared and I won’t be afraid to say that I don’t know the answer to a lot of questions being asked of me. I will rebelliously make plans for the future, not letting these results dictate my life and what I do with it. I will face this head-on with bravery and fear alike, as I am forced to do time and time again, but I will also make space for ignoring it when I want a moment of peace. I am forced to take my own advice and reread the last few sentences of an essay I wrote about sudden loss for The Globe and Mail just 3 months before being diagnosed, which I’ll leave you with below.
I don’t know how much time I have left on this Earth – nobody does. So I walk around the neighbourhood to enjoy a breath of fresh air even when I’m exhausted, I push myself to try even when I think I’ll fail and I jump even when I don’t know where I’ll land. Our time is often cut unpredictably, unmistakably short. It would be a shame to live life being anything less than brave, bold and adventurous.
Thank you for sharing your beautiful writing, Summer.