Remission(ish)

I’ve been avoiding writing.

To write requires thought and when I think I feel feelings and I’m so fucking tired of FEELING. We’re going on six straight months where daily living has become a ticker-tape parade of doctors, friends, family, husband, and strangers in line at the co-op ask a version of “how are you feeling?” As a mildly anxious, hedonistic, armchair philosopher who contemplates unanswerable questions for fun, this is not a simple question and since cancer, it’s been like an assault. Assuming this is a person who I care about, who cares about me, who really wants to know how I’m feeling, shaking them off with a disingenuous “fine” doesn’t cut it. Where do I begin? The uncomfortably long list of ways I’m physically uncomfortable? Where I am on the undulating and totally unpredictable spectrum of hope to grief? That I’m lonely but also only want to be alone? Ready for an adventure but afraid to be far from medical care? Sick of looking sick, of being hairless, of getting stared at in public? Feel pressure to eat, pray, love perfectly or I will cause cancer to come back? How am I feeling? Pull up a chair.

Did you catch that last bit? The ‘cancer comes back’ bit? Yep, it’s true, the PET scan showed no cancer. Zero. Nada. My oncologist called the scan “pristine” in a voicemail that I have saved in a file on my phone called open in case of an emergency.**

An hour after getting the news we made what felt like a pilgrimage to the Whole Foods parking lot in Eugene where we found out I had cancer. Again, we wandered around in a stupor.

He’d assured me that he would call the same day as the PET scan, so from the moment I slid out of the PET scan tube*** the air was thick with the absence of a ringing phone. Figuring the wait would be weird and scary, we had the car packed and immediately hit the road for our first trip outside the zip code since BC (before cancer). We choose Portland as we could see close friends in a city we know well and be a short drive from home if we wanted or needed our safe space.****

The call came while we were parked at a rest stop. I had just cracked open the door after returning from the bathroom eager to tell Evan about the middle-aged man in Jnco’s blasting Cher’s Do You Believe (in Life After Love) filming himself doing a poor job of hacky-sacking (verb?) in front of what I can only assume/pray was his tan 1980’s Trans Am when a ring came through the car speakers. It was Nicole, the oncologist’s nurse, who asked if I was Hayley in a cheerful tone - cheerful enough that I knew. Head in hands, Evan draped over me from the passenger seat. We wept with our whole bodies. We wept for a long time. We wept until we noticed two concerned women picnicking next to the trash bins watching us like a movie, mindlessly eating chips and all. We wept through at least 2 Cher songs. Then, metaphorically and literally, got back on the road.

We called our parents. We sent texts to our closest friends. Then we sat in quiet for a long time. We sat in quiet most of the day and night. We went to bed in quiet, our eyelids and minds heavy.

The next morning - light. For 4 glorious days, we didn’t talk about cancer or feelings or what happened or what will happen next. We just PLAYED. Bike shops, bookstores, bakeries (the 3 B’s of Schmidtke travel), coffee shops, A+ falafel, B- chocolate. We rode bikes to a Cyclocross race and cheered on strangers in the pouring rain, we went to the huge PSU farmers market then watched the Iowa v Penn St game with our BFFs, we got stoned and wandered around grocery stores then stayed up late watching Great British Bakeoff. We drove through soft, white falling snow to Mt. Hood on through the high desert to Bend where we did our 2nd favorite Bend activity only to playing outside: sitting downtown and watching the rich people parade around in highly choreographed outfits.***** No thinking, just being.

Resting up in the sun with Hazel & Jack after a intense somersault compatish.

Waking up Tuesday morning and the quietness had returned. Locking eyes once and we knew. It was time to begin the coming back to ourselves, to sift all we’d been through to see what remained. It was time to go back to work, to buy groceries, to feed the cats and scrub the bathroom sink and wash the sheets and decide if Disney+ is really worth the money. It was time to feel feelings again, whatever those may be.

Date: Friday, October 15th

Location: Hematology-Oncology office

Purpose: Follow-up appointment with the doctor

Attendees: Hayley, oncologist, Evan via speakerphone (Covid restrictions still in place)

Good news: Still no cancer. A pristine PET scan, indeed.

Old news still painful to hear: I have a rare, aggressive lymphoma. As suspected, I ha(d) stage 4 lymphoma (I didn’t want to know this but it snuck out in the discussion). The aggressiveness means that the likelihood it will come back is high and most of the time is in the first 20 months after treatment. The rareness means that when it comes to ongoing treatment AKA prophylaxis there are few studies to draw from on the best route to go.

New news: The recommended prophylaxis is two more 21-day cycles of treatment, this time using a drug called methotrexate. Like last time, it would be 3-5 days inpatient followed by a few weeks of recovery. This is a gnarly drug that brings a whole new set of side effects. To do or not do treatment is controversial as studies show it doesn’t reduce the reoccurrence of cancer and, for those that go past 5-years without reoccurrence, it makes no statistical difference if you do or do not do the treatment. It has shown that it delays reoccurrence by an average of 11 months. We have the choice to do or not do the treatment. I was handed a stack of studies, my “pristine” PET scan, and sent home with instructions to call with my answer when I had one.

Back at home, we were back at the proverbial rest stop again; Evan draped over me as we wept.****** As I write this, we’re still sorting through all the reasons why we feel so sad. We figured we wouldn’t feel celebratory if the PET was negative. That is not for lack of optimism or belief that I, that we, have everything “it takes” to keep cancer at bay. I guess it took this appointment on the back of all we’ve been through, on the back of the inhale of freedom from thought we had in Portland and Bend, to humble us to a new depth. What had only been a whisper in the hidden rooms of our minds was now floating in the space between glances - that we have no control over the time we have to live and no roadmap of how to “live our best life now”. Our chest aches with the heartbreak that there is no going back to the peace we had before cancer.

Not that we would want to.

In that heartbreaking moment of holding one another after deciding yes, we’re going forward with two more rounds of treatment, I lifted my very wet, very swollen eyes and looked at the fireplace mantle behind Evan. We have made use of every inch of the space on the ledge and wall behind it. Some, myself included, would look at this and think it’s cluttered with nick-nacky junk that needs a good going through. This time I felt a wave of a tingly warmth woosh through me - you know it, that one you have when you saw your crush as a kid or that we all feel for just a fleeting moment in true happiness. A powerful feeling like awe, a delight as I scanned the items. Everyone is a story from a place, a time, a memory of love, connection, adventure, of the mountains, of family, of laughter. I haven’t looked at my stuff like this before. Stuff is stuff no more, it is the totems of a life well lived with love - a life that will never feel long enough. Great love and great pain have woken up our senses. The mundane has become essential. What I love and have loved, what matters, is clear. Given the choice, I would choose this bigger life. I would not go back.

I’m ready.

Tomorrow we will select the dates to begin treatment. I wonder if it will feel different this time seeing as I don’t have cancer? It’s tempting to write that after these two rounds I’ll be “done” but there is no done to this, we are beginning to feel through, to understand, to process that fact. Aww, don’t fret my friends, this isn’t sad, this just is. Okay, maybe it’s a little sad.

Speaking of sad, we tried to dust ourselves off last night by going to see the new James Bond movie in theaters and it was meh at best. To be fair, our vibes didn’t really match the movie so that could be on us. It was worth going just for the Jack London quote at the end that seemed written just to meet us in our moment:

"The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time."

That’s a fact, Jack.

Arbitrary footnotes:

**This file as well as a folder in my inbox called HAHA are places I store gems (videos, music, emails, mantras, pictures) I come across that will pull me out from the winter of my discontent into sunny skies. Before you start thinking it’s all Ram Dass quotes and cats, I just checked and half of it is offensive, tone-deaf, and other ‘ya canceled’ worthy emails I received either from people at my old corporate job or marketing blasts, usually from local businesses. For example, the local Oregon Business Who Will Not Be Named that sent out this gem, “Today is Martin Luther King Junior Day. It’s also Thesaurus Day and Winnie The Pooh Day and International Creative Month! So whatever you’re choosing to observe, we support you and want to offer you $2 off today.” Ooph. Nope. (Filed)

***That’s what she said. (Can we still say this? Should we? Okay. One and done. RIP That’s what she said.)

**** Rule #1 of grief and anxiety management: have a bailout plan.

*****Think THIS clip from Dumb and Dumber

******If I had to guess, I would say we wept for at least 3.5-5 times through If You Believe.