This time last year, I received my sixth and final cycle of chemo. And earlier this month, I learned I’m still in remission. During chemo, having this much time felt impossible. A whole year. An eternity. A moment. I’m surprised, daily, at how far I’ve come, how much better I feel. While looking at my original PET scan with my oncologist, I wondered how I even survived long enough to get through the diagnosis stage. In that original scan, my tumor is an enormous, glowing menace. It has pinched and pushed my esophagus up and over (at the time, I could only sleep with my upper body elevated). But in my CT scan from June, it now looks like a deflated, wrinkled sleeve. My lungs are beautifully clear, two night skies without stars. My esophagus is not only back in place but much wider. I learned recently that, not only did my SUV max go up slightly during chemo, but part of my tumor actually grew during the last three cycles (hence, radiation), which makes my ongoing remission feel all the more impossible, the more tenuous. One more year, and I’m out of the highest-risk-for-recurrence phase.
The units that measure post-treatment life: three months, six months, two years, five years. Sometimes they’re comforting. I just have to survive these next three months. Sometimes they’re exhausting. A whole year left to go before I can breathe a little more easily. And always, the shadow of cancer and what it can take. Looking beyond those units is intimidating. I can’t help but wonder, will I be punished for doing so? For making plans? Is that hubris? How to regain trust in the future after it was so swiftly ripped away before? How to believe again that I might exist there?
This part feels like a mirror of the beginning in a way. There was so much shock to navigate when I learned I was dying and again now that I’ve learned I might live, am living. I had to come to terms with a changing body then and again now. And still, there’s that question of what’s next, whispered into the dark long past midnight.
Still, hope returns bit by bit. Joy expands. Strength increases. Even though post-treatment life is much lonelier than pre-cancer life and just-diagnosed life. In the beginning, emotional support from family, friends, and even strangers was at its strongest. That tapers off with time, and understandably so, but also, no matter how sympathetic friends and family are, no matter how much they care, no matter how close we are, unless they have or have had cancer, they’ll never fully understand how it feels. I’m grateful to have found a community of fellow cancer patients online, especially since the pandemic has denied me the opportunity of making a cancer friend IRL.
During treatment, a whole team is there to guide you, but it feels like I’ve been left to figure out this next part on my own. There’s excitement in that. There’s also pain and grief as I discover which pieces of my life just don’t fit anymore. There’s survivor’s guilt and the pressure it applies. And, of course, there’s trepidation. It’s hard beginning a new life without knowing if and when the rug will be pulled out from under me again. Can I survive losing so much all over again? Welcome back to life. I walk into the thunderstorm, arms outstretched.
A large part of what makes post-treatment life so hard is the financial devastation. I think there’s this hesitation to talk about how precarious survival is, not only because it feels like ingratitude but also because of survivor’s guilt. I mean, at least I made it through treatment, right? At least I was lucky enough to have access to treatment. At least, for now, I have time. But it’s so important for people to know the cost of cancer in this for-profit system. After all, many don’t make it because of that cost. So I’ll say it. Post-treatment life is fucking precarious.
Some people seem to think that getting cancer is like winning the lotto, that it’s this magic ticket to leave all your responsibilities behind, dump all the hard stuff, and enjoy everything you’ve been putting off. But only the lucky and the rich get to dedicate their remaining time to checking off a bucket list. And no one gets to do so with the same body they had pre-cancer. I mean, there was a reason you didn’t do the things you wanted before cancer, right? You couldn’t afford it. And now the medical debt looms large, keeps growing year by year. Job loss and job discrimination is a reality for so many.
A great many of us struggle just to make ends meet. In many cases, we have to rely on the kindness of family, friends, and strangers to cover the basic costs of living. We have to deal with the assholes who call our survival–our desire to survive–selfish. We have to work full time through chemo for employers that act like we never existed as soon as we become inconvenient. Some of us fight to get disability that keeps us in poverty. Some of us have to hunt for work that can accomodate our changed bodies, jobs that–during a pandemic–put our survival at risk. Some of us can’t afford to pursue the future we promised ourselves if we survived.
Recovering from cancer treatment can feel like starting over completely, not only with a different body, but being hyper aware of how fragile that body is. Carcinogens are everywhere, so normalized that people don’t give them a thought. I see a person spraying herbicide on a small weed clump by the stockyards, no mask and no gloves, the droplets splashing their pants, and I shake my head. So casually people court their own disaster. On my way to my cancer center one morning, a crop duster passes over the road before me, still releasing chemicals. There is nowhere for me to go. So casually we expose others. I asked my chemo nurse once if she ever worried about her consistent exposure to chemo meds, and she shrugged and said it’s impossible to avoid carcinogens. Capitalism echoed in that shrug, that resignation. Our bodies, our lives, just fallout.
Still, I try to reduce the toxins in my life that I have control over, ever aware just how much of a privilege reducing toxins can be. I left a toxic job and cut ties with toxic people. It’s hard seeing the worst in people when you’re at your most vulnerable. It’s hard learning that some people will resent you for surviving. Some–often the healthy and able-bodied–will get tired of you and your disease. Some will only give support to make themselves feel or look better, will view that support as a transaction, hoping to cash in on their investment for some kind of personal gain in the future. Grief tourists and vampires will pass through using your experience as inspiration porn, surfing the wave of your suffering, never having to get their own feet wet.
Knowing that those who truly cared for me all along will remain, will remain true, doesn’t make any of that any easier, though my gratitude for them is boundless. That’s the double-edged sword of sharing this experience. I read some advice recently that you don’t owe anyone access to your life, and I think that’s so important to keep in mind, especially during cancer. Sharing can help you and others process and navigate the experience. It can be cathartic and can help you form connections with those who understand. But sharing can also be a gift, and you’re not obligated to share anything with those who aren’t worthy.
My body, at first so reluctant to move forward, now feels like it’s racing ahead, and I’m protective of its every step. Lower back pain has been an ongoing concern. My oncologist referred me to physical therapy to address it, but I didn’t go because I didn’t want to face the fatphobia that I’ll likely encounter in such environments. My body is amazing for getting me here, and no one is going to tell me otherwise. Instead, with guidance from a generous AT I know, I discovered water walking, and that has helped my back pain immensely. I also found that walking on rough, uneven surfaces helps the pain, so I’ve added hiking to my list of options, you know, when wildfires, heat waves, windstorms, snow and ice, etc. allow. I’ll continue to find the things that work for me and on my own terms. Every time I discover something I can do again, such as lying flat without feeling light-headed, I feel so much joy.
One thing that started happening over the past few months that has me worried is pitting edema in my feet, since my chemo regimen can cause heart failure. I also walked away from chemo with GERD, and the medicine I take for that can cause kidney disease and kidney failure. My next round of blood tests to check for those possibilities is in October.
Minor things, but still worth mentioning I think: my thoracotomy scar gets tender from time to time but hasn’t caused me any problems. And my keloid port scar continues to be itchy and painful, even though my port was removed in January, but that seems pretty common. It also feels like the catheter was left in (I can feel the tube of it under my skin), but my oncologist said that’s just scar tissue. It’s more of an annoyance than a concern.
Something I’ve been trying to get better at and still find hard is self-advocacy. It can be exhausting educating and reminding able-bodied people about my needs, limitations, and amount of spoons. There’s so much pressure placed on non-men to never be an inconvenience, to never get in someone else’s way of enjoying something. Fighting against that pressure is fighting the patriarchy, or at least, that’s what I tell myself when I feel bad about doing so. When I’m having a high-fatigue day, which I’ve had fewer of over the past three months, I have to be very clear about what I can fit into a day. I have to be the enforcer. When I’m having a bad back day, I have to pay attention to having my cane and know what seating options and scooter/wheelchair options there are depending on where I want to go and what I want to do. For a while now, I haven’t had to use ambulatory aids. I often feel like an asshole advocating for myself, but it’s so important.
Some days it’s easy to fall prey to focusing on everything I’ve lost instead of what I still have. But it’s ok to grieve what’s lost. Healing can’t be achieved by ignoring the wound. And I believe grieving is a form of gratitude.
Yesterday I drove past a parking lot I pulled into a while before my cancer diagnosis because I was having intense and sudden thoracic pain, and I was struggling to breathe. I should have gone to the doctor, had been going for sinus issues, but I was sure I’d get those tired excuses non-men, especially those who are fat and not white (I do have white privilege), hear so often: it’s nothing, it’s all in your head, you just want attention. How many people, especially marginalized people, do doctors continue to kill with their bias? How many perpetuate that harm by buying into this dehumanizing and dismissive mindset?
I’ve considered deleting every post that’s on this blog because of that mindset. No matter what I share about my experience with cancer, I get the vibe from some that I’m just sharing for attention. I hate the “you’re just doing this for attention” crowd as much as I hate the toxic positivity crowd. After all, they almost killed me. The origin of these mindsets, I think, is white supremacy, is capitalism, is authoritarianism. It’s hard not to see someone as a person once you hear their story, and this system demands that some people not be seen as such. And when one person admits something is messed up, others are encouraged to see and admit that too. All of this threatens profits that are made by exploiting someone else.
Sharing one’s story, especially if one is part of a marginalized group, can unravel oppressive mindsets and therefore systems. Of course you’re speaking because you want attention. You want the attention of the person or people you’re speaking to. Otherwise, why ever speak? Why have a voice? Why have language? If someone tells you you’re speaking because you just want attention, they’re really just saying, shut up, I feel threatened by what you have to say. Which means it’s something they probably need to hear. Existing as a member of a social species requires communication, and you not only have the right to exist, you have the right to speak and be heard.
Finally, I can’t get away with not mentioning COVID, right? It has been nourishing for the soul to be able to go out and do things. I’ve even enjoyed job interviews, perhaps appearing a bit too eager just because it’s so nice to talk to people in-person again. But of course, anti-vaxxers are threatening to strip that away as the delta variant spreads. There’s no telling how effectively my fully-vaccinated body will handle COVID if I get it, and with each passing day, it feels ever more threatening finding an in-person job, doing water walking, shopping, etc. It fills me with despair thinking I might have to return to isolation. How can I afford that? But I’m so tired of pleading with people to be decent. Some people simply can’t empathize with or care about others until they pass through the same fire. How many lives does their education take? How many lives?
Until next time, thanks for reading. Thanks for sharing these walks with me.