cancer – There Will Be Mistakes

Today:

How’s everything else?
Getting over being sick, myself.
Oof-Did you have the stomach flu?
Fucking Diverticulitis. I’m old.
You are NOT old. You’ve got trauma body.

Trauma body.
A serious illness – as many of you experience – changes not only your world view; you know, that precious idea that to have been close to death means one is to be grateful for everyday, that bodies heal and adapt and it gets better; but actually, your body. The old , the once sick all know this istrue. We walk the world and, even those of us that are also survivors, see other survivors as doing well, or atleast better than they once were. I do it, see my friends that I know have suffered from illness for a long time and long for the kind of presumed health they appear to have. I know better.

After four days of pain, I strode into my favorite coffee shop – the owner, a friend, walking the length of the room towards Charlie and I. We were going to talk about a project, we had our community building hats on, but I couldn’t do it that day. I was crippled by pain, anxiety, and fear because I’d been suffering with a deep pain in my guts for four days, and the doc ordered a CT scan and labs that exact day, the day that I called. My friend, not typically one for a hug and especially not during COVID saw the welling-up of tears in my earts, heard my utterance that I was scared and brought me in for a hug. She knew I needed that hug. She saw me come close to death. She’s seen her friends through it.

“I’m afraid it’s cancer. I know better, but I’m afraid.”
I think that’s pretty normal, she said, or at least expected.

I’m always afraid it’s cancer. A pain in my hip = cancer. A relentless headache = cancer. Nothing, the silent but deadly kind: cancer. Cancer skewed my world view, my perception of my personal ecology, it wrecked me in physical ways that I’ll never be able to rectify I fear, and even though I look, and I try to be clear about the ways in which it does because not as many people know the life long side effects of a powerful disease such as this, such as MS or diabetes or the litany of other ways in which life is deteriorated. Yes, deteriorated. That’s why it is, isn’t it? Every day, from top to bottom, the questions and the unseen issues associated with survival: when will it come back or get worse?; the nagging brain reminding you you might die and perhaps too early; the numbing of feet and limbs and random parts of a body from chemo, radition, and surgical sites; the weakened joints and muscles; the loss of dexterity or a constant shake; the uncontrolled swelling of a body; the vunlernability to other illnesses – the flu, the ‘rona, an infection; the issues of cognition and memory; the guilt of not being fully able to return to the way you were; gross things that I won’t recount here; the acknowledgement that your deterioration will inevitably be faster than those around you. It’s a hard thing to say outloud but it’s true. I will live a good life, a longer life than I expected after I was alerted to the cancer in my body at age 35. But I won’t have the kind of long life I thought I may have had: living to my 80s or more like both of my grandmothers and great-grandmothers. I mean, so long as the world doesn’t burst into flames before then.

It might.

A friend whispered to me the other day: Yeah, I’m undergoing radiation three times a week. Prostate cancer. The second time. I’m sorry, I didn’t mean to dump that on you.

There are a lot of ways that folks deal with diseases and their side effects: quietly, loudly, intermittently, as if it is a bump in the road on the way to regaining health. I honor all of the ways – it is not my disease or body. I am the loud one, but I am saddened by the quiet pursuit of the tenderhearted who go it alone, apprehensive the share the burden they are carrying because I am not is triggered by the serious illnesses of others. I have often considered working in hospice care and probably will some day. Having been cared for with patience and the grace of others was like nothing I could’ve ever imagined. To have a memory of cancer treatment as a challenging but joyful period is a gift that was given to me by my caretakers and my community. I continue to be grateful.

When I got into the chair for my labs this week, I was greeted by three nurses who saw me through treatment. One of them – despite COVID – brought me in for a hug. I needed that hug. I walked to the CT center and sent her a text: Thank you so much. I needed that. When I went into the CT room, the Radiology Tech recognized me. We talked about how I still count the holes in the speaker (Hold your breath. You can breathe.) for comfort. She asked how many: around 260. I remembered that the man who recorded the voice for the CTs across the nation works at my local hospital. It was the voice I heard at Mayo clinic too. How long has it been? Over seven years. Are you doing okay? Mostly…

It’s all familiarity. The hospital is somewhere I never want to go, and yet there is comfort there.

The scans are clear, there are no tumors and no blockages; a relief since I haven’t had a scan in a few years. The diagnosis is Diverticulitis. My pain felt like someone stabbed me in the abdomen and that it was healing. I was sick. Sometimes I was doubled over or on my knees on the floor with pain. With some heavy antibiotics and a temporary liquid diet imposed on me by my partner via research, I am on the mend, but I can’t express to you how upset I was, still, that an infection like this is thrust me back into the deep fear of death.

Honestly, I’m tired of this sick person existence.
Tired of the cost of living, or going without the medical supplies I should have.

Tired of the internal dialogue:

Be gentle to your trauma body, your brain.
This is awful and it’a all because of cancer.
Your body is damaged, ugly.
Your body is strong and has lived through so much.
Nothing will ever be the same.
Nothing will ever be the same.

Trauma body, trauma brain: they inform so much of what I do. How I press through challenging life issues and don’t do the work I need to in order to keep my body well. How I shut down during conflict and I am always expecting it. How I am always looking around to see if I did something wrong, and looking forward how I can persist if something goes wrong.

Cancer made me fucking strong and also tender. It’s given me perspective and can pull me right down into the bog with a swiftness. I’m seven years out and it’s always there reminding me that I’m a part of all things, and all things come to an end.

But not today, cancer, not today.

First there were forums. That was the turn of the century and I was living in Seattle as a new adult making more than enough money to spend on pleasure than vital expenses. I lived in a house with fifteen bedroom “apartments” and shared a floor with Colm – a dude from Ireland, and this other guy who had a VW bus and the most obedient dog ever named Karma. The forum I joined at the suggestion of a friend who went by Smoke (I see you, Matt) was a group of hip hop enthusiasts, producers, emcees and poets from around North America. The forum? UHHF: The Ultimate Hip Hop Forum.

Ralph lived in Broward County, FL; Smoke, Zeb and I lived in Seattle; Harrison lived in Toronto; Brenda was in Chicago, I think; Anthony was in New York and Eddie was in Jersey; Rob was in Cinnci; Yessica and Sally lived in Southern California; and Nazara didn’t go by that name then, and ~~I can’t tell you where he lived~~ lived in Oakland. We all had alias names or stage names, and we were connecting in a world under our love for hip hop, sharing our music and poetry, and politics were for the few of us too. That’s where I started writing in the digital world – in a safe place where you had to be invited or allowed in.

After that there was email blasts. Mostly to family. Mostly while traveling. Several years later, Friendster (BRING IT BACK!) and MySpace.

I started a blog in 2006. That blog was named after a free table I’d found on the side of the road in SE Portland, just off 33rd and Division. The sign said: wobbly legs. I modified it for a zine titled Wobbly Little Legs which I thought was appropriate for my trepidation around sharing my writing and navigating the world, which is at odds with the fact that I have rather large and steady legs in real life. I kept up a blog under that name for a second too. It still exists today and the last time I wrote on it was four years ago. Don’t judge my young perceptions too harshly. It is pretty embarrassing. Plus, I’ve never been good at routine, regularity, or editing.

I went to the University of Idaho for my MFA from 2008-2011 and wrote my heart out (cliche’) on a thesis that was supposed to become a memoir (also cliche’). When I graduated and my faculty advisor told me it was time to rewrite it, I was crushed. I get it now. When my mother told me it was pretty good but I got some things wrong, I questioned my delivering it into the world. Then I started teaching, got cancer, worked in politics, and bought a bookstore. I took a detour away from writing, and now I return again.

I’m starting a blog because I’m leaving Facebook – the platform that has captured all of my long-winded rants and quips, all of my family photos and memories. You know all the reasons why I’m leaving. The drawback is that I also share the same sense of loss (a fear of those who also struggle with leaving) for my connections that Facebook has intentionally designed to keep people anchored to it despite it’s overt accomplice to the destruction of democracy, among other things. A decade ago we could celebrate social medias as platforms that spawned the Arab Spring. Though information is quickly circulated and your fundraiser is more widely attended due to Facebook’s event functionality, my personal morals and mental health are compromised every time I log on. I can’t sit by and watch lies be spread undeterred at the hands of Zuck and Sandberg et al. And every time I go to leave Facebook I am told that people will miss my writing and insights, even though I feel like I am yelling into the ether every time I post.

Thus, a blog.

The subjects I write about tend to center on me – I’m not ignorant about that. In a graduate school class we were told some students come with things to write about, and others create things to write about. I am of the former. Unusual circumstances checker my life, but I have a hard time honoring that because I believe unusual circumstances checker everyone’s life, they just don’t write about it. I have also been told that my belief isn’t true. My students have been those that both feel unchained from the silence around their experiences, to the dumbfounded about a topic to meaningfully explore. But I’m going to give it a shot anyway.

If you know me, you’ll recognize these topics. Trained in memoir, you’ll see my memories tied into today’s topics; Cancer – I had it – and ongoing health stuff; nontraditional families like the one I grew up in; “political” things like being and my place in it being a nonhetero, femme, cisgendered, middle-aged, white, human who is anti-capitalism and yet, owns a bookstore. I also like to write about all the trouble I got into as a kid, but I hope to craft it in a way that isn’t naval-gazing.

There will be more of I don’t know what.
Hold my beer. Here I go.

Tag: cancer

Me and My Trauma Body

First Things First