June 2023

Cast

Me
Matt, husband
Joseph, son
Aubrey, daughter
Zeph, doggo extraordinaire
Shanthi, oncologist with Kaiser
Jenna, ND, Naturopathic Oncologist
Joel, cousin

Glossary:

Folfoxiri. Split up, this is the combination of Fluororacil or 5FU, Oxaliplatin and Irinotecan. All chemotherapy drugs that make a person uninterested in dancing to Rick Astley. They’re strong.

Short version:

Feeling well. Cancer is growing.

Long version:

It’s been a full year since HIPEC. Surgery was the 17th. The 29th was the day I came home to our new house.

I really don’t know where to start. Do you want a blow-by-blow of the last year? Probably not. Do you want to know my prognosis? Probably. Everyone does. Spoiler alert, the cancer isn’t going anywhere. It’s growing.

That being said, I feel well. By way of explanation of how well, my much younger cousin, Joel, visited recently and the two of us clocked 23 miles over the ten days that he was staying with us. Eight of those miles were with Matt and the kids on a walk to Packwood Lake. The rest involved me trying to keep up with him. He’s 6’4” and I imagine it to be similar to running with the BFG. I set three personal bests in a row.

In May, I was kicked off a drug trial because my cancer had progressed. It had begun in January. The problem with the trials is that they are just trials; experiments to see if a drug works, and to monitor the drug’s side effects.

That trial was testing a drug that targets the KRASG12C mutation. I hadn’t known that KRAS (pronounced kay-rass) mutations had different types. I had known that my cancer has KRAS and that it was a problem. Sentences like “Unfortunately, KRAS mutations have long been considered impossible to treat with drugs,” are available to read on the internet. It’s a doozy. So the trial targeted the KRASG12C mutation. But my cancer has the KRASG12D mutation. My cancer grew. I was no longer eligible.

A month ago I went to Seattle for a consult with a new doctor for a new trial. But it’s not for me. He and all other doctors I have spoken with seem to think there’s another combination that would be more effective. So we’re going with the other combination.

But, since I’m feeling well, we decided to wait a month before we start. I have a scan July 3rd, and we’ll see how things are going. As Shanthi said, the most important thing is quality of life. We’re not going to cure the cancer by starting immediately. We can wait and I can enjoy life. My goal is to stay as healthy as possible for as long as possible.

Similarly, the medical goal is to keep me alive until the next new therapy comes out. This is not hyperbole; it’s a direct quote from one of my doctors. Unfortunately, the next new therapy is unlikely to be the cure-all everyone hopes it will be. Another of my doctors said the most they hope for is a four month halt in progression.

Two or three times a week I am receiving high doses of vitamin C. This is 75g. And IV mistletoe remains a possibility, though I am currently just injecting it under my skin. These are treatments my conventional oncologists pooh-pooh, even though mistletoe is one of the most studied adjuvant therapies and is widely used in Europe. It just isn’t studied in the US, probably because they can’t patent it and make money off it. Vitamin C has some data, and some of it was positive for KRAS mutated colon cancers (hey, like mine!). But the positive was that it got people an extra six weeks. And again, not studied because there’s no money it it. You can’t patent Vitamin C.

This is the point at which we’re essentially asking the question, how much money is an extra six weeks worth? Because IVC and mistletoe are not covered by insurance and are insanely expensive. How much money are we willing to spend for a chance at a few months extension?

Joy

I designed and hand-planted a 137 foot hedge. I knew a person who knew a person who let me purchase the plants at wholesale prices. I am secretly calling it my Legacy Hedge because I won’t likely see it in full maturity.

My goal had been to support pollinators, and to that end, I wanted a row of Ceanothus Victoria. But then I thought they may not be suited here — they don’t like a lot of water. So after investigation I settled on the following: Pacific Wax Myrtle, Pacific Crabapple, Douglas Spirea, Lewis Mock Orange and Oregon Grape. It will be so gorgeous once it has matured.

This spring, our cherry trees exploded with pom poms of pink. I tried to soak them up in sight, scent and presence. Also with photos.

I planted a few garden beds using the compost I cried over. An experiment! I kept telling myself. I found inspiration from Charles Dowding and his youtube videos. So far the experiment is growing.

Matt and I have spent some moments in the last year, two-stepping around the living room to Amarillo by Morning. Bliss is trying to remember not to lead. Lately, Aubrey and I have had dance parties to what she calls The Best Playlist aka Summer Throwbacks.

Meaning and Purpose

I am balancing keeping meaning and purpose in my life, and living into a future, with being realistic.

I have been offering classes for parenting with Nonviolent Communication through Pace e Bene. I started with a four week course and the participants asked to keep going. I still feel well, so we’ve morphed it into a drop-in course that is on a week by week basis.

Another way I am finding meaning and purpose is my Growing Hearths blog about trying to raise children nonviolently.

Reality Around Death

I often think about choices around my own death. I have thought seriously about assisted suicide. This is available because people fought to give those who are dying a choice to pass with dignity. Today, as I write, I don’t think it’s for me. But it’s settling to know that the option is there.

I think about what will happen to my body. Number one choice around that is compost. As in, I want to be composted. And then planted under a magnolia tree, or something. Perhaps a tree that is native to western Washington. Something colorful, and fun and in which we can hang hummingbird feeders.

I just found out that a water cremation is also possible.

Another option is to be compressed into jewelery. Aubrey likes the idea of wearing jewels who used to be a person. Joseph finds it icky. And to be fair, Aubrey just likes the idea of jewels—real jewels, plastic jewels, she just likes shiny stuff. She may be part magpie.

Cows

We were unable to stay away from cows, because, well, everything is better with cows around and we now have four, white, Charolais steers spending their final summer on our pastures. Joseph has put a lot of effort into making friends with the cows and both children spend a portion of their days brushing the flies from the cows’ backs.

The bit I love about this photo is that Aubrey’s left hand is resting on the cow’s head. Also, in the background is “our” brewery, Jones Creek Brewing. They’re our neighbors and apparently they brew excellent beer. I can only recommend their tap water which is also of excellent quality—reverse osmosis.

Last weekend we went to help out the farm from which our cows came. Matt and I got to work cows together again. There are jokes about how spouses should not work cows together. We do not fit that stereotype and working cows with Matt, specifically, sorting cows with Matt, is one of my happy places.

The kids are also total naturals with cow work and animals. Of course. It’s in their genes.

Zeph got her first exposure to working cows. She has an instinct for it. She and I worked as a team, receiving the cows as they were coming out of the chute and moving them through the barn and out into whichever field they were designated. Zeph was awesome. She waiting for them to be released, then she’d follow them and, once they were through the gate, she’d turn around to go collect the next cow. I love a dog that knows their job! And interesting to me, she has zero bite in her around the cows. And no grit — she won’t stand her ground. When a cow turns on her she retreats immediately.

Grief

I feel so grateful that I can grieve as effectively as I do.

After a harrowing conversation with someone that left my senses of care, support, being seen, connection, self-responsibility and emotional safety hugely unmet, my compost pile offered me the space and stimulus to grieve. Correct, the compost pile had nothing to do with my need to grieve. It just offered the space. So, while I had done some crying, I was holding the rest of it in for a few days until I discovered a rock in my newly-designated compost pile. This knuckle-sized pebble suddenly represented everything that was wrong, and I sobbed and wailed for literally hours in the center of my compost pile as the grief flowed. I wish was this available for everyone. The freedom, openness and uplift on the other side of those tears is immense, even in the face of cancer. For me, this is the authentic positivity that can only come through allowing the full force of the grief to flow.

I have also been able to grieve the death of a friend, who has been six months ahead of me this whole time in our respective lives with cancer. She sent me her first email as I was beginning FOLFOX two years ago. We continued to talk, and we talked about the hard stuff - about what’s coming. There was a refreshing shared reality and mutual understanding in those conversations.

Authenticity

Speaking of refreshing, I find the conversations and relationships that are based in reality the most refreshing.

Example: A friend sent me two books, one titled The Needs of the Dying. I felt seen and understood and cared for with authenticity. At the same time I had total trust that there was no expectation to read them and I told her I just couldn’t, yet. They went on my shelf. Recently, I have become curious about what’s in them and it won’t be long before I pick them up. Receiving the books and having the freedom to choose when I read them, even if just emotional freedom, gave me the sense of being held and cared for.

Another example is another friend asking what we’re going to do about mental health help for the children. I feel seen. There’s an authenticity in that question and level of support.

I value the willingness to sit with me in the reality.

Vigilance

The friend who just passed away was feeling well in February. So I don’t take my current sense of health for granted. I revel in it. I enjoy it. I love it and I am present to it. The vigilance enhances my acknowledgment and honor for all the small pieces that I might not otherwise notice. And it also brings every little abdominal twinge into my awareness with the question “is this the beginning of the downhill slide?”

I read terrible news and feel so thankful. I could have been killed in a car accident two and a half years ago, but I’m still here, figuring out what’s for dinner, wiping up dog vomit, listening to a detailed explanation of a drawing, forgetting where I put my keys, digging deep for empathy when the dinner I prepare is declared “disgusting” by a hangry child, and wondering how long it’s been since I cleaned the toilet.

I still get to do all this.

There are probably easier ways to develop deep gratitude. I don’t recommend FOLFOX, but it’s awfully effective.

Mattering and Being Seen by Medical Professionals

In that KRASG12C trial that I was just on, I felt seen and like I mattered to the people there, even though they were all working for some big mothership-like study that didn’t actually care about me. This trial was at the SCCA/Fred Hutch Cancer Institute.

At the SCCA/Fred Hutch, everyone goes by first names. There’s no Dr. So-and-So. It’s Stacey, and Megan, and Maddie, and Jeff, and Leslie, and Jim. I could call and say, “Hi Megan, it’s Sarah.”

Last year, when I was in hospital after my HIPEC, I asked one of the female junior doctors if they could go by first names. She said no, because then people might get confused with who has what roles. I call bullshit on that. No one gets confused. I prefer the connection, the human-to-human relationship that is more likely when I refer to someone by their first name.

Anyway. I had an experience where I was uncomfortable with one of the male technicians who did my echo for the SCCA/FH trial. There wasn’t really anything specific, but Team First Names took it seriously and I had a female technician the second time. She was wonderful, and when I was done, we had a long good-luck-on-your-journey hug. Everyone has journeys. I returned to Team First Names and told them specifically what was different about this second appointment. They gave it such weight that they said they would call and let the first office know, even if just to change protocol.

Huh. My experience mattered. And I noticed. I noticed how different this reception was from what I expected or what even I was telling myself. Unfortunately, women’s negative experiences with the medical profession aren’t taken seriously much of the time. The new Serial podcast, The Retrievals looks at it.

Delight

As I write, I’m sitting across the table from Aubrey and a friend of hers. They are playing with home-made playdough. It’s teal. As they balance spheres of the stuff in their outstretched palms they are proclaiming, “I am mother nature!”

Joseph and Aubrey have been climbing the cherry tree (not the one that blossomed) and picking handfuls of cherries, morning and evening.

There is one, little, female Rufus hummingbird visiting our feeder. And cliff swallows diving for bugs in our yard.

When we take family walks, I’ve been using the Merlin birding app to identify birds by their song.

Last night we played jump rope out in the yard. Aubrey got to 20 in a row. I ran in for the first time since primary school. Aubrey managed to keep the rhythm with Matt and between the three of us, got me to 30 jumps.

The ducks are still quacking loudly. They have a new, very large pen, which, after a year of free-ranging, is not big enough in their opinion.

Bugle.

Bugle with Squeak in the background.

Community

We have neighbors and friends who care about the planet and the dignity of all people. I am so happy the children get to witness what it looks like to show up for others whose voices have historically been ignored.

My online village remains so strong that it’s hard to think of it as online. My deepest source of emotional support as well as avenues for meaning and purpose are possible because of the internet. Real people, real time, zooming around the world.

Next

July 3rd will give us some answers and guidance as to whether I begin treatment again or if I can go for another six weeks without. I’d prefer the latter.

Final Blessing

May you:

find authentic joy
receive accompaniment in your grief
be accepted just as you are
know a village
sense deep in your bones that you matter
always have cows around