(this is called Witchy Vibes, and was concocted at The Sapphire Hotel in Portland)
My husband has had cancer.
Ok. That makes it sound like Sad Hour doesn’t it? But we go to “bars,” whatever they are for both happy and sad, frankly. All emotions get to show up.
This Substack is a pretty eclectic mix of essays and ephemera from my life ranging from the personal to the professional. I suck terribly at dividing the two and always have been-honestly, I have been an utter failure at siloing my posts because it’s my whole life and it all connects.
The common ground is that I’m endlessly curious about human beings and the systems they build, engage in, thrive in, survive in, or destroy. That includes everything from a family holiday gathering to the best workplace you’ve ever been employed at, to downright cults.
Cause really, the systems all play out along similar dynamics. Some are just healthier and more accountable than others and one of my simple beliefs is that it all depends on the health of (or the alignment of the dysfunction) of the people in the system.
Meaning, you can have the most well meaning loving people fuck that system up, or you actually could have some toxic folks run a (toxic) but high functioning group. It’s super odd.
Anyway, groups gather. They gather in person, in offices or homes or bars or parks and they gather virtually. They might even gather in a singular imagination. They gather in dreams. They gather, work or play, and then disperse. They knit together which has been torn asunder. They tear. They knit.
The one thing human beings don’t seem to do is utterly live alone.
That first line is still hanging there right?
My husband, someone who I have gathered with in a dyad (two) and in a family system (parents, inlaws, children, pets) for thirty years now, got diagnosed with a Mixofibrosarcoma. You can do the reading if you wish.
It was a sudden sharp turn in the road. We, or he really, discovered it in his thigh in April. and took off to Portland on a long I5 drive to figure out what it was.
My husband and I have been together, as mentioned, for thirty years and in that time we’ve shared a lot of time on that particular road, I5. We’ve made many road trips up and down.
We got together in 1993 up in Seattle and within a few months he wanted to take me to meet the parents down in Ashland, Oregon. That’s about an eight hour drive if you are speeding, which we did, because we were very young. You drive through Tacoma, Olympia, Portland, Eugene, and finally over a long hilly and curvy stretch into the heart of the Rogue Valley.
We’d leave work late and get to Ashland at 1:00 in the morning, and we’d do that drive at least twice a year, summer and Christmas. We got engaged in Ashland one spring and spent the entire eight hour trip back planning the wedding.
We planned so much on that freeway. We fell in love. Deeply.
Dating, weddings, jobs, careers, moves, school, sex, future children. We fought, laughed, sat in stillness, listened to Art Bell on AM in the middle of the night, wrote stories and poems and created our own world.
We live in Ashland now, after an 18 year stint in Texas. We drove the highways there, but really, they didn’t feel the same. No real reason to go up to Dallas and back that often. A few trips were had to Houston, or the Gulf, but road trips just weren’t really the same. He worked in San Antonio for several years, while living in Austin, and so he knew that particular stretch of I35 very well, but it was a solo thing for him.
Road trips should be fun, I always have thought. And nearly all of ours have been.
How do you make a road trip up to Portland, where your beloved is getting a biopsy on a quite large tumor on his leg (honestly, it's like several link sausages stacked on top of another, or as the surgeon said, “It’s as big as a Nerf football!”) fun?
Coffee. Loud music. By bringing the 20 year old son with us and letting him sing at the top of his lungs while we travel to OHSU for the aforementioned biopsy to see what’s going on in his sausage links football thing.
The Nerfy tumor started off as a lump in the back of his left thigh in April. The first doctor claimed it was a lipoma. Lots of people get those. I have a few, one is this little dime sized thing behind my left ear. Same size since I was 13 or whenever I found it. But, the little lump on his leg kept hurting and, as he was to take a road trip with students from his film department down to LA (forever exploring I5) he asked for a second opinion and wondered if he could just get it excised easily and quickly pre-trip so that the 12 hour drive with 15 students would be more comfortable.
Nope, says the second opinion, that there lump looks funny on the in-office ultrasound. Let’s take a deeper look. Nope says the fancier ultrasound, that thing is bigger than you described and has suspicious vascular activity. Let’s get it MRI’d. NOPE says the MRI, that thing is a big mass and you sir need to take a little trip up to the cancer center in Portland where they can biopsy you.
Why not biopsy him in the Rogue Valley? They do have needles and cancer centers in our little region, populated as it is with thousands of folks. Well, because this thing could be what’s called a soft tissue sarcoma, which is a pretty rare cancer that needs extra special careful biopsying so that it doesn’t wind up getting loose in the lymph system. Or it could be a malignant nerve sheath. Sounds terrible right?
Plus, if it’s actually cancer, you need a sarcoma specialist to operate on it. The good news is that these things are usually a one-and-done kind of blip cancer. The bad news is that they are rare enough that the specialists are in big cities. Which our city is not.
So, off to Portland on the 4th of July, traveling I5 once again, Chris sits in the back seat with his leg propped up by pillows. He’s in a lot of pain as the link sausages/Nerf football are pressing on nerve and muscle. No one is planning or talking much. Clearly, here I am writing. Evan is singing Abba songs while driving. Chris is reading, likely trying to distract himself from all the stories he and I have both been making up about this new little intruder in our life.
It’s not the first intruder.
I had a bout with very early Breast Cancer. That’s a popular cancer meaning it’s pretty much everywhere and so there are specialty treatments in every city.
It’s not popular. Wrong word choice, but you know what I mean.
I had ductal carcinoma in situ, which means it was a little glob of carcinoma cells inside a milk duct but encapsulated and not yet invading the rest of the breast tissue. In breast cancer you get 5 stages? But one stage is zero? Which really sounds like no cancer, but it means the cancer isn’t invasive. So I don’t understand why it’s just not stage one, since you have to have surgery and radiation and you get an oncologist. But then it’s ZERO. Which also isn’t a dress size goddamnit.
I had to have two surgeries because the first one didn’t get all the bad stuff. No lymph nodes. I recuperated from that and then did a month of radiation and started up on some anticancer drugs. Some small scars but mostly invisible. I’ve been clear since then but ever since there is a month pre-mammogram where it’s like Schrödinger’s Cat, er Cancer. Is there or is there not something poking around being a dick.
In this case, we knew there is a Cat, er Cancer. We just didn’t know how bad it was. And this is where a very particular kind of stress exists. No stage zero for Sarcoma. It’s a branching “if this, then that” kind of stress. If it’s stage 1, stage 1b Stage 2 etc that leads to multiple branching processes of treatment from surgery to radiation to chemo to immunotherapy and of course nutrition and rehab for the leg. In every particular order. Sometimes chemo first to shrink tumors. This meant him or us or some combination of us living in Portland. It's chaotic and disruptive.
So we drove. We tested. We waited. And hoped that our beloved drives on I5 are not now transformed into something much more difficult and dark. I guess that’s life though. You just drive on, no matter what.
But…it was a Mixofibrosarcoma. Which we found out about in the middle of a Lyle Lovett concert at my place of work. Which fit, sort of, given our Texan history. The details don’t matter much here but all of a sudden we were back on our way up for the long day of meetings with doctors and surgeons and planning specialists who got us ready for all the things.
Surgery. Radiation. Potential drugs. Time off work. Living in Portland. Surveillance for 10 years. TEN YEARS. Discussion of potential metastases and how to monitor for it.
Sexy road trip. A Happy Hour. A gathering of two. In health and in sickness.
This long story is already too long, but it’s my Happy Hour and my glass of rose. He had a successful operation! Technically cancer-free! He’s currently living in Portland getting his thigh scar (much more dramatic than mine) blasted with radiation every day Monday through Friday for 5 weeks to make sure all the baddies are dead and gone.
We are both existential.
I fly up to Portland now and we walk around the Mt Tabor neighborhood he is (blessedly) living in (THANK YOU G and D). We get to commune as a married couple in a brand new way. Like staying in a vacation home except it’s not really a vacation. But still, we wind up discovering each other more and more and more, we gather with each other in these fascinating new ways. Morbid at times? But fascinating. There is this closeness and a strange light in the dark.
The drink featured was this wild wonderful concoction called Witchy Vibes and frankly, I loved it. Ingredients are as follows: Witchy Vibes. Vodka, pisco, crème de violette, lemon, balsamic, egg white. Lavender-black salt, up.
My love and I will gather and will depart and regather like the scars that knit up skin and muscle after an invasion by knife or by life. It’s all we can do.
(not at The Sapphire but they also had amazing drinks)