Train's A Comin'

Can't Get Off the Tracks

Abstract

I’m off the trial that I began in February, and I will start a new and final drug as soon as the bureaucracy at the insurance company gets unstuck and approves it. The drug is called fruquintinib. (froo-QUIN-tin-ib). It’s not yet available in the UK.

Through the drug, life extension is a couple of weeks to a few months.

I’m making end of life plans.

Full Text

Introduction

I’m sitting here at the dining table trying to think of something intelligent, or insightful, or amusing, or poignant or memorable. I got nothing.

Next to me is a cardboard box with holes in it. There are scratching noises coming from the cardboard box. In it are several grasshoppers that Aubrey has decided are pets, along with grass, leaves and some water. I’m doing my best to ignore the willies it’s giving me.

The rabbit hole I’ve just been down for the fourth or seventy-first time (I can’t remember), investigating the effects of falcarinol on cancer ended a little short. There is no evidence that falcarinol (found in carrots) will kill my cancer. But there is data to suggest that it might affect some cancers by inhibiting proliferation and increasing apoptosis, though not necessarily in colon cancer and mechanisms of action are unclear. And the levels of falcarinol they injected into the mice or rats was so high, I don’t know if it’s possible for me to get that much. So do I keep juicing carrots or not?

I oscillate between being desperate enough to try anything, and wanting to enjoy myself if it isn’t going to work anyway, so I end up being sorta kinda partially committed some of the time. Which is an approach that precisely zero people have claimed cured their Stage 4 whatever cancer.

Cancer Update

Here’s the logistical stuff: the trial drug worked well enough for some of my cancer, but not all of it. The Trial, with a big T, marked several tumors that they followed and they roughly stayed the same size the whole time I was taking the drugs. Therefore, the Trial thought the drug was working.

However, there were other tumors that the Trial had not followed and those tumors grew. Some are in the musculature of my abdomen. Like, mixed right in with my abs. I can feel them when I accidentally touch my stomach - something I try to avoid - or when they give me the sensation that a bee is stinging me, or there are stitches there that are pulling apart. And it now hurts to sneeze or cough.

Another tumor grew in my rectum and got to be so uncomfortable my appetite decreased significantly. I had a sigmoidoscopy (a short colonoscopy) so they could get a look at it and then started radiation. The Trial allowed this because it wasn’t a tumor that they were following.

About a week after radiation, for ten days around my birthday, I was in bed, unable to stand up because of the inflammation caused by the radiation. It was a rough couple of weeks. I would move from my bed, to the toilet, to a hot bath, and back to bed. I just couldn’t be upright.

The children picked flowers and arranged them for me while I was down. These wild roses smelled unbelievable.

Now, we are clear that the trial drug has totally stopped working, so I stopped taking it. That was ten days ago. Stacey Cohen, the lead oncologist on the team at Fred Hutch, applied to my insurance for approval of the new drug, fruquintinib, almost three weeks ago. We got an immediate no. She then applied for a review and we got a speedy, bureaucracy-laden response that the request was denied. It seriously would have taken less time to call Stacey to clarify the “error” they found that became their reason for denial. Now, two weeks later, I still haven’t gotten the drugs, the insurance is refusing the next step (a peer-to-peer review) and meanwhile my cancer is growing unchecked. In my more negative middle-of-the-night headspaces, this seems like a perfect strategy for getting people to die faster so you don’t have to pay out as much money.

I have middle-of-the-night headspaces because I have leg/hip pain that is keeping me up. I am making an educated guess that my pain is cancer in my bones. A PET scan and MRI scheduled for the end of this week will give us a definitive answer. The cancer has not shown up in my CT scans, but according to Stacey that doesn’t mean it’s not there. In the last week, the pain has gotten worse every day.

The new drug, fruquintinib, is the final drug that I will take to stall my cancer. It’s not the last option I could try that may extend my life, but it is the last option that I am willing to try. There is an FDA-approved drug I’m not willing to take because of what doctors have told me about it’s toxicity. And Stacey has offered me FOLFOX again because there is data that it can be effective once a person has been off it for two years, and I’ve said no. No, because “effective” is not suggesting a chance at a cure, but a chance at extended life. And I’ve said no because that’s just a chance and even if it did extend my life, I would feel awful. I am balancing length of life with quality of life and I am very clear that I want to start hospice feeling as well as possible, rather than being sick and exhausted.

Mental Health

I have been doing really well. I am in constant vigilance (like Mad-Eye Moody) about whether or not I have depression again. Each puffball pattern of purple clouds, each hummingbird resting on the sunflowers, each bumblebee gathering pollen on the Douglas spirea - I breathe in relief that my delight signals that I do not have depression.

Example of bee on Douglas spirea.

Since coming off the trial drug, I have prioritized meditation for a short period each day. There are new understandings and layers of acceptance that reach me while I’m trying to breathe with my brain empty.

However, as my leg pain gets worse and my sleep more interrupted, my mood is also getting worse. I am hoping for some effective pain meds, and there may be the potential for radiation on these bones.

Friends, Connection, End-of-Life Planning

We’ve had visitor after visitor after visitor.

My sister, Lucy, was here during the kids’ birthdays. We spent a night in Seattle, moseying around Pike’s Place Market before coming home. She helped plan and execute a rainbow-themed tea party for Aubrey with decorations I’d have never thought of, and she became Zeph’s person-of-the-week.

Then, a long-time friend, Azori, came for the night with her husband, Kody and four of their six children. We had first met in New Mexico and bonded over bible study. I would question Azori about everything I could think of. Twenty years later, it was such a sweet time sitting on the swing, toasting smores, watching our kids run around together.

At this point I knew I was going to have radiation for the tumor on my rectum, and I was getting uncomfortable.

I would lay on the floor to relieve the pressure, and Zeph would come and lay with me.

Ten days later, our friend and neighbor Christine drove me up to Seattle and back for the first few days of radiation. Christine and I continued what was started with Sula and Suz - a series of in-depth what-do-I-want-the-end-of-my-life-to-look-like? conversations. Instead of sending me into despair, these conversations give me a sense of agency and choice, and in turn lift a weight from my shoulders as they unfold. I feel held and seen.

Then, over the weekend, Azori was back. She flew up from New Mexico with the sole intention of driving me to and from the hospital for the last two days of my radiation. Azori and I went deep into end of life planning: where do I want to die?; if I have a choice, how do I want to die?; do I want to choose when, and what would that look like?; who do I imagine being present?; how do I want the children to remember me and what must I put in place for that now?; is there an afterlife?, what if there is and I don’t believe there is - then what?, what if there isn’t? We also had some deep catchup, having barely spoken in the twenty years since we were in school in Las Cruces. It was an intense and intensely beautiful two days and I felt so grateful and lucky and, again, seen.

Matt’s mum, Judy, then arrived just in time to take care of everyone while I couldn’t function after radiation. I stayed in bed and Judy did everything. I would be half sleeping, listening to everyone playing a Uno Flip, or Skip Bo or Match Madness.

Zeph would visit me with her ball.

Not long after I was able to stand up again, we all piled into the truck and headed to Idaho for a week on a lake with Matt’s family. I got to finish recovering and the children got to submerge themselves in cold water all day, and exhaust themselves fishing or paddleboarding or swimming or all three.

Joseph took to paddleboarding like he was born to it. And Zeph, as much as I love her, was a real pain in the butt. She’s attracted to chaos. Chaos can come in the form of: bubbles, splashes, screams, barks, sticks in the water, fish hooks, children paddling away, other dogs who are excited, other dogs who have a ball, other dogs who might take her ball, other dogs who have a stick, other dogs who might take her stick.

Two days after our return, Pam and Rachel, (who, if you remember, listened to me cry and accompanied me in (and subsequently lifted me out of) my depression) flew into Seattle. They came with me to my appointment, we took the kids to the beach, finished a beautiful and complicated wooden puzzle, Pam guided us through a Shabbat blessing, they offered authentic empathy to the kids when I was at capacity, offered the children a genuine option to say “no” to an new adult, and were the exact people I’ve fallen in love with over zoom in the last five years. Our open, honest, yet caring communication that has been one cornerstone of our relationship allowed our four days to flow and feed my soul. Suddenly, poof, they were gone. I’ve gotten so used to people staying two or three or four weeks, the four days felt a little jarring on my system. Even the children noticed it. Why did they leave so soon? It seemed that everyone wanted them to stay a little longer.

Then, another old friend, Becca, arrived with her little boy. We chilled, rode bikes, took walks and laughed. A lot. One day, we were playing badminton with the kids, and I was laughing so hard my face hurt. For me, that is a hallmark of our friendship; in the same day I can be doubled over in mirth and then we can be having a conversation that leaves us both in tears.

Nineteen years ago, Becca and I connected over a love of sensitive horsemanship, silly humor and the surprise realization - one day as we were riding up a steep hill after dinner - that we both speak Double Pig Latin. Which reads like Daigoubaigle Paigig Laigataigin. And now Aubrey is fluent and will announce in the evenings, “from now on, I only want to speak Double Pig Latin with you.” This is my legacy. I’d prefer to be handing down my saddle and a love of a needs-based consciousness, but it is what it is.

Community.

Our sense of community is strengthening.

Christine, who drove me to Seattle several times, brings us blueberry pie, and beet juice and other things. As I type, Rod, her husband, is up high helping Matt install the roof trusses on an ADU that Matt is they are building. Tim, our neighbor and local brewer also spent hours helping install the first, very heavy roof truss. Mirinda (who I climbed Mt. St. Helen’s with last year) bought me some socks because she read the wording on them in my accent. Tim and Mirinda cared for our cats while we were in Idaho and we cared for Willow, their dog, while they went camping. Rod watered our garden. I’ve offered a few NVC classes to locals at the brewery. Matt has downed a tree and cleaned a ditch for neighbors. He dug a hole for a dead cow that Richie, another neighbor, had to euthanize - the same Richie who was the first person I called when Matt got his foot stuck under the tree. (Did you know about that?) Richie was also the person Matt called last year when another neighbor had his burn pile get out of control and it came within 6 feet of his tall, wooden barn. Within minutes, in my memory, Richie and a large crew poured out of his truck and they and Matt got the fire out fast. Mirinda organizes gatherings for our little neighborhood, the most frequent of which is Friday night Trivia at the brewery. Our town doctor is now Matt’s doctor and we were all on the same trivia team the other night. We bought eggs from him early one morning, this summer. In the last few days I’ve borrowed an air-fryer from Michael - our neighbor directly across the street and another occasional trivia team mate - and returned it 24 hours after I said I would, with no rift in the relationship, evidenced by the offer of some cake today. And Rod is taking carrot fiber, that is leftover from my juicing, to his chickens.

All of this circular coholding and shared responsibility and neighbors helping neighbors helps me feel more settled.

Team Kmon at trivia.

Now What?

I am still waiting, (I started this blog post about five days ago) and I am STILL WAITING for approval of this drug.

When it comes, I hope it holds my cancer for a few months rather than a few weeks.

And then, it’s hospice.

Joseph has learned how to make chocolate zucchini bread this summer (and has made several batches) and has showed interest in my plan for the garden next year. Both kids can start their own loads of laundry and switch them over to the dryer, tidy their rooms and put their laundry away. They can take their plates to the dishwasher and load them, when they remember.

And they want me to stay with them at night for “a long goodnight”, they call to me when they wake up so I can go in for morning snuggles, they ask me to escort them to the bathroom in the evening to brush their teeth because (shhh!) dark corners are scary, and they want me to hear aaaalll their troubles.

At some point soon, we’ll have the conversation that I am no longer taking drugs to combat my cancer and I will die.

I can’t even believe I just wrote that. With every layer of acceptance, another bubble of disbelief rises.

Do I leave instructions about the garden? Would that be helpful or add more to already full plates? Tips for keeping the floor free of dog hair; tips for stopping the duvet covers from knotting in the dryer; how to cut Zeph’s toenails; when to deworm the cats; how often to water the houseplants; most inspiring parenting podcasts to listen to. Do I pass this information on and is it even helpful?

We’ll soon be paying, in advance, the cost of composting my body. I want my compost planted under a Saucer Magnolia. Composting is expensive, but better for the environment.

And I’m not eating any more pork between now and when I die. Empathy for piggies.

A while ago, I wrote to Rivera Sun, who wrote the Ari Ara Series. I have been so enamored and taken in by the cultures that Rivera paints in these books, I thought that they might have something to offer me and my family around how to process my death. I asked Rivera if she had written and cut a death scene from the book, or if she’d be willing to one for me.

I knew this was a big ask, and still I asked because I have been trying to step into the assumption of interdependence in nonviolent communication - that we humans find that contributing to another human is a gift to us. I asked Rivera to hold me in this very specific way, that is particularly tailored to her skills. And I made sure that she knew I was totally open to the no - that this was a true request, not a demand; a gift of information about how I could be specifically supported.

Rivera responded, yes, she would write about death from the perspective of all four of the cultures in the Ari Ara books. Rivera sent me her writings, and when the time is right, I will sit down with Matt and the children to read them.

I find myself in odd (though normal, apparently) thoughts. Like, huh, this woman is pretty and seems to have a head on her shoulders. I wonder if she is single. I wonder if I could introduce her to Matt.

I’m not even kidding.

I cry very easily and the children roll their eyes. I cry when Somalia’s single athlete is waving from their spot on the barge, when Gabby Thomas gets and stays out in front, when Keely Hodgkinson wins a gold medal, when Yaroslava Mahuchikh jumps that high, when Katie Ledecky starts kicking and wins by miles, when the women’s triathlon leaders collapse just over the finish line, when the tired horse leaps out of the water during the cross-country. It doesn’t matter whose national anthem is playing, or really, who won, I’m in tears over the effort and the energy and the realized dreams, and the children are sooo over it.

Matt and I celebrated our thirteenth and, possibly, final anniversary. We went out for Mexican food. Again, I cried, and again, Aubrey rolled her eyes, as I told Matt and the kids just how grateful I have been that we chose each other and how lucky I think they are to have him as a Daddy. Even Joseph got a little teary and I commented on it, telling him I was glad that he let himself feel that. Aubrey doubled down, “well I had tears in my eyes, but that’s because I was choking on a chip.”

More on Matt: physically, he’s strong as a cedar knot while being patient when I’m at my capacity, gentle, caring, kind, and honest. He acts with integrity and authenticity; the children don’t hear him disparage other human beings. They do hear him communicate in direct-yet-respectful ways when people do not meet his need for respect - through trespassing on our tree farm, for example - or they don’t do the job he paid them to do and they promised. His approach to hold these humans accountable inspires them to want to respect him, to be self-responsible, to act in integrity instead of defensiveness. I am so glad that Joseph and Aubrey get to witness this in action in a father and a leader in their lives, that they are getting the message that this is what leadership looks like.

The Future

We have more visitors on the calendar; Charlie, Sue and Yanna; Judy; my other sister, Helen; my parents. I suspect the list won’t end there.

There are more hard conversations coming up with different people.

Earlier this spring, Becca had suggested that I make videos to leave for the children, and so I have. The plan is for them to have access to them at certain milestones. It’s more time consuming than I had imagined and I will continue to make more videos when J and A go back to school.

Further into the future, I am bolstered by the thought that Matt and the kids have a standing date/tradition to go spend Labor Day weekend in Bellingham with dear friends; that recently someone said, I’m getting tickets for Los Angeles, 2028. Tell Matt; that there might be the possibility of a fishing trip to Alaska in my children’s future; that trivia will keep happening on Friday night, and that our neighbors aren’t going anywhere any time soon.

My family will be alright.

Before that, I imagine I’ll write on this blog one more time. Or maybe I’ll be bored, in bed and I’ll write more than that. It might be less long-winded.

I’m trying to think of something funny, or poignant, intelligent or insightful as a way to close this out. I got nothing.