(probably) fine, (probably) benign
I (probably) do not have cancer again.
I (probably) do not have cancer again.
The information still feels foreign to me, like a statement that was made to somebody else. I had a follow-up appointment with my oncologist on Monday to learn the results of my most recent scan, done after 3 months of waiting to see if the new nodule in my lung would grow.
In this most recent appointment, I was told that I (probably) do not have cancer again. I’ve typed that twice now, and it still feels like I’m telling someone else’s story. I feel like the only option is to try writing it out, Bart Simpson style, until it becomes real.
It’s hard to feel grateful and relieved when the good things don’t feel like they’re happening to you, and even harder to feel grateful and relieved when you don’t know for certain that good things are happening to you. The load bearing “probably” looms over me and my every move, decision and emotion.
I’ve spent the past three months in what I have not-so-affectionately deemed “Results Purgatory”, which was torturous, to say the absolute least. Sitting on the knowledge that you could be incredibly sick for three months is nearly unbearable, and unfortunately common. As cancer patients, we are continuously forced to reckon with our mortality, face traumatic diagnoses, sit and wait with intense discomfort, and do it all with a brave face.
The first two months were bearable- I kept myself as busy as I could, seeing loved ones, spending time recharging, and managing the many other chronic health conditions that cancer has bestowed upon me. I took up watercolour painting as a way to turn my brain off and calm down in the evenings. I got out in the early spring sunshine. I baked new recipes, made an effort to see my friends, and tried to live as fully as I possibly could, in case shit hit the fan and I became too sick to do the things I love again. When the beginning of May rolled around, I waited patiently to receive a call inviting me to come and get my earlier-than-usual follow-up scan. My phone never rang, and my anxiety grew slowly, starting in the pit of my stomach.
I received a call from the dreaded caller ID of “BC Cancer” soon after that, inviting me to come in on a cancellation for a thyroid ultrasound, which was certainly a creative curveball on their part. I didn’t know I needed a follow-up this soon on my thyroid nodules (a benign story for another newsletter), but I went in for the ultrasound anyway. A few days later, I received a call from my oncologist informing me that nothing of note was recorded on the ultrasound. We made plans for follow up in the future, and she then asked how my follow-up scan on my chest had gone, and I promptly told her that it hadn’t gone at all.
The scheduling department had forgotten to book me a spot for the very time-sensitive follow-up scan. Wonderful.
That small administrative mistake cost me nearly another month of my sanity. My scan was booked two weeks later than it should have been, with my results appointment being booked a week and a half after that. The situation became a lot more real on scan day, when my old chemo nurses were attempting to finesse an IV into my tricky veins, asking why I was in so soon after my last scan. I explained the situation to them, and was met with concerned looks and genuine pity. Seeing the people who kept me afloat while going through the worst treatment of my life was frightening, to say the least.
After my scan was completed, all hell broke loose in my brain. I became inconsolably anxious, zoning out and becoming nearly catatonic on an almost daily basis. I tried to prepare for the worst, so I wasn’t blindsided by bad news when I inevitably received it. I nearly had a breakdown about buying a new bottle of conditioner, because a little voice in the back of my head had convinced me that I would lose my hair again before making a dent in the bottle. I RSVP’d to friend’s weddings this summer with a racing heart, terrified I’d have to reach out to them to cancel. I stopped making plans past results day with a lump in my throat, knowing it would sting if I had to clear my schedule of fun for treatment. I have some of the worst luck of anyone I know, and I think my friends and family would echo that statement, so it felt fairly set in stone that since there was an opportunity for something to go wrong, that it would. It’s hard to hope for the best outcome when the worst outcome seems to be the one that happens time and time again.
Time went on before receiving results, and I realized there was a secret third option between recurrence and cancer-free- the possibility of more watching and waiting. There was a chance that the nodule stayed at the same size, and I’d promptly be sent back to results purgatory, living in a constant state of unknown; an ultimately good outcome, but an annoying one at best.
That being said, the outcome of my scan was indeed the secret third option, which is where the “probably” in my Bart Simpson-style chalkboard exercise comes into play. The nodule in my right lung grew from 4mm by 1mm, to 4mm by 2mm- totaling a grand 1mm of expansion. My oncologist explained that this small of a change is within the margin of error for a radiologist interpreting the scan, so there’s a good chance it is actually still the same size. This small of a progression is incredible news and very uncharacteristic of Osteosarcoma- if it had been a recurrence, the nodule should have almost doubled in size in the three months that we watched and waited. The diagnosis, which is more common than I previously realized, turned out to be “probably nothing to worry about”.
A few hours after receiving results, I felt a wave of embarrassment wash over me. I shouldn’t have been so scared, it was nothing to worry about in the end. I briefly regretted sharing such volatile news so widely- it ended up being nothing, why did I have to worry so many other people when I could have kept it to myself? I felt as if I’d been overly dramatic, exclaiming to anyone who would listen that there was a monster under my bed when in fact there was nothing but a few dust bunnies and forgotten socks.
Soon after sharing the news with my family and close friends, message notifications started to pop up, all with about the same sentiment of “holy shit, thank fucking god”.
If my loved ones were this relieved, I deserve to feel relief too. If they were this worried for the past three months, maybe I wasn’t overreacting . Nobody said “Yeah I knew it would be fine, it was nothing to worry about, you were just being dramatic”- so why should I allow myself to minimize the emotional hell that I lived during the past three months?
Being afraid of the worst case scenario is nothing to be embarrassed about, especially when the worst tends to happen and your luck is horrible to begin with. The brief moment of regreting sharing the news that I was potentially having a recurrence has passed. I am not embarrassed of being scared, and being scared publicly. I am proud of myself and my ability to exist in the unknown so openly. I am proud of my vulnerability. I am proud of my drive to let those who are lucky enough to not be familiar with all of the quiet parts of cancer and its recovery, take a step into my life.
So what now?
I watch and wait some more. My scans are scheduled a tiny bit more frequently for the next little while- every two and a half months instead of every three. I proceed with more optimism than caution this time around. I finish the bottle of conditioner, I go to the weddings and I fill my calender with plans to spend time with my loved ones. I choose to ignore all of the bracketed “probably”s that have presented themselves to me. I continue on with my recovery, finding ways to thrive with the new chronically fatigued, brain foggy, and limpy body that I am still learning to exist with and love. I try to have faith in my body, put effort into its healing, and trust that it won’t betray me again.