In the months prior to my diagnosis, one specific prayer I made was that I would have a direct encounter with God’s love. I cannot really piece together now why I had that specific prayer at that point in time, but I do remember thinking that it would be answered in a dramatic way: a vision, something cataclysmic. And I guess that a health crisis is pretty profound. But the way that prayer was answered was much more subtle. Since that time, I’ve encountered what I can only describe as God’s love through the care providers that my health crisis has put me in contact with. Doctors, yes, to some degree, but mostly it’s been the nurses and then also people in food service, people cleaning the facilities, people transporting me from place to place. There have just been a lot of genuinely loving people showing care and kindness. In the tougher moments, this bouys me.
Losing my hair is something that I felt viscerally, in my gut. Every neuron in my amygdala screamed, “something is very wrong here,” as hair rained down like pine needles from a January Christmas tree. At times it was physically painful, but what was harder was coaxing the logical part of my brain to calm the panic. And it wasn’t about how I look bald, but I didn’t feel like some character in a movie shaving their head in front of a mirror in a moment of empowerment; quite the opposite. I had no control or power. This was just something happening to me, which is how much of this feels. I’m in constant search for what I can control which, it turns out, is very little.
I get the sense that the oncologists base the dosing and pacing of treatment, in part, on what it seems the patient (me) can tolerate.
And now I fear I might have come across as stronger and healthier than I am. And now I’m paying the price.
Such are the scenarios that I come up with in these moments post infusion (chemotherapy treatment for those — blessed be!— not familiar with the oncology world).
I spend a lot of energy resisting the urge to google every symptom, side effect, twinge, and twist. It’s hard to tamp down that niggling feeling that somehow if I just knew enough, if I just “understand” what’s going on then I could heal myself. But then I remember: there are many ways of knowing. There are many ways of comprehending. I’m lucky in that I feel like I have doctors and nurses who are super smart. I leave the western medicine and science to them. I trust them to understand that …. and in the meantime I try to lean into some other understanding, some other forms of knowing.
I recently met a woman whose mom had just had cancer. She took the time to encourage me and, amongst other words of advice, one that stood out was how important it is to eat. At the time, I didn’t know yet how hard it would be (my sense of taste and appetite have changed) to do such a basic thing. This woman was very emphatic about the importance of eating and her energy comes to mind whenever I’m struggling to eat.
One of the reasons that this sticks with me is that this was an in-person interaction. It holds extra weight to me. And while the internet is obviously full of information, having to weed through what is or is not relevant is exhausting.
I’ve always thought of myself as someone who is in touch with their body. The cancer diagnosis made me realize just how untrue that is.
And I’m kind of pissed off about it. I think the society I live in (the US) doesn’t support ownership over and connection to our bodies. Or at least me to my body. Everywhere, the messaging is that how we see our bodies is wrong, that we constantly have to change them, that they are for other people, products, not for ourselves.
Cancer has felt like my body’s ultimate betrayal of itself. It is my own cells, afterall, growing amok. Maybe it was just attention seeking, my body crying out to my brain to pay attention to it, to stop letting everyone else (advertisers, bosses, patriarchy, gazers, etc…) control how I use and view my body.
So is it possible that cancer is trying to teaching me to reclaim my own body? Maybe.
I have cancer.
There I wrote it.
I’m trying this out as a place to write about my experiences with cancer and treatment, etc… I’m remaining anonymous because, well, I just don’t want to be known in that way, I think it might allow me to write about this more openly and honestly — which I think might be more useful out in the world than my carefully curated thoughts.