March 16, 2024

Waiting

Mrguy has Stage IV esophageal cancer. Not curable, not operable, but hopefully treatable with chemo and maybe targeted therapy and maybe immunotherapy. We do testing on the 25th and 27th and have the port put in on the 27th. In the meantime he sleeps a lot and is weak and nauseated. More testing is hopefully being done to determine his biomarkers for the immunotherapy. This is all complicated by the fact that we were at one hospital in a specific hospital system when the testing will be done, and are now in a second and different one.

I am a mess.


March 10, 2024

Onco Tomorrow

Tomorrow is our first oncology appt. Not sure what to expect -- it's by video.

I found someone on a cancer group who is being seen by the same doctor, from another state, by video. I am trying to connect with her. I found another person who is being treated at the other research hospital we are trying to get hooked into. I will call her today.

There are good stories and bad stories in the group. A lot of encouragement. A lot of new caregivers to the group, like me, who need encouragement. I cope through community, so my writing group, my Alzheimer's caregiver group and friends are holding me right now. I am so touched by it.

In the meantime, I have a new therapist. The first one listened but didn't quite know how to handle me. This one, who came about because of an insurance change, has a different approach. She disarms me with her big, soulful eyes and insightful words. Is it the right time or the wrong time to be this fragile?

Since January of 2015 I have been strong. So effing strong. Finding joy and even a lot of humor in walking mom's path with her. Normalizing it with friends and co-workers by talking about it. Going to one and even two caregiver support groups a month, while the sibling in charge refused to say Alzheimer's or learn about it so she could understand our mom. Being in a three-legged race, of sorts, with siblings who can't deal with the reality of the situation, the enormity of the task, the level of her compromise. The pressure from mom and those siblings relating to how much and the quality of what I do for my mom. While working full time. Through the pandemic, when I was being told that I had to move mom out of the 55+ community and into an Airbnb that my sister found. The fear of my sibling's reaction when she learned it wasn't optimum. The horror of being told that I owed her an explanation for why I wouldn't let my mom in the house during her pandemic visits (cause I didn't want us to give Covid to each other and die, maybe?). And I will say that all of this was for a mom that I didn't really gel with. On behalf of those living far away who did.

That's only up to 2020, when I thankfully got a therapist. And in the past few years I've been able to put up a wall with my mom and my sister and get closer to living my life. Over the last six months, mrguy has been begging me to stop seeing my mom because of the visits' effect on me, and after some of the last stuff she doled out (how many times can you hear her talk about sex or wanting to disinherit me if she's not getting what she wants, or pinching my fat tummy?) I have almost stopped seeing her entirely. Which was a win. Extricating myself just in time for this! And just in time for my new therapist who is trying to crack open my shell and reveal the dainty un-strong nut meat within.

So now I cry. Any bit of tenderness pries me open and I weep. I am so vulnerable. Unfortunately mrguy sees me weep. I miss my shell. I'm guessing that it will re-form around me once I know a direction we're going in. 

fuck cancer, People!



March 9, 2024

And in Sumo News

Things are really heating up on the way to the March basho, which starts this evening.

Most significantly since Hatsu basho, one makuuchi rikishi was forced to step down for super disgusting and cruel behavior. Not quite Yabu in the novel (and 2 mini series) Shogun, but he admitted to enjoying the pain he was inflicting on the younger members of his heya. I am guessing that the NHK broadcasters on the English side of the program, at least, will have a lot to say about this.

Also, the head of his stable, Miyagino Oyakata (formerly Hakuho, the winningest yokozuna in the history of sumo) is getting sent down, so to speak. He will not be allowed to run his stable, and it is unclear what his role will be. His punishment is for allowing the behavior that got the other guy canned. It's really serious.

There's a thing that happens when you retire from sumo but stay in the Association as an elder. The first thing you notice is that the rikishi is posted as sort of a guard in the tunnel that leads from backstage to the auditorium. He sits on a folding chair and wears a blue windbreaker. It's the first rung out of the world of the fighter on the way to other roles. Some folks work for the Association. Some take roles as commentators or broadcasters on NHK, and some become trainers in a stable. A rare few are able to buy sumo stock that allows them to take over a stable until the mandatory retirement at the age of 65.

Darn, I only have 3.5 years to join sumo, get good, retire from the ring and get elder stock so I can run a stable...

Anyhoo -- Hakuho got knocked down to the bottom. During this basho he will be wearing the blue windbreaker and sitting in the hanamichi, facing the dohyo. I wonder if anyone will refuse to bow to him when returning from the ring. 

Another Week

Two days until our first oncology consultation on Monday. Mrguy is having trouble eating or wanting to eat. We did watch an episode of Suits last night, which was a joy. I've joined two esophageal cancer fb groups. Community is how I cope.

I've been working this week. My colleagues are incredibly supportive.

Mornings seem to be good-ish for mrguy. He can eat a little something, take a shower and then rest.

And that's what I've got. I am freaked out, worried about running the house and paying bills and taxes and when mrguy doesn't want to eat I feel devastated (but push down the feelings).

All of this is moving so fucking slowly. I need treatment to hurry up and happen.

Update -- Sitting here with mrguy in the kitchenden, and when I'm with him it all seems fine somehow. He's on his green chair with Gordon on his lap, reading the news on his phone. He mentioned the other day that the Giants have a player who is super handsome and so popular that his dog has an Instagram account. So I went and looked at Insta. I just lurk and never post.

Never did find the dog's account, but I did reconnect with whathavewedunoon. I started following this account about a year into Claire and Cal's restoration story, but it is super gripping.

https://www.instagram.com/whathavewedunoon/

I looked at it and thought -- what if mrguy's journey is like them? What if he's a work in progress that can be fixed somehow? Lots of challenges but a resolution. I'll hold onto that today.

For now...


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