A Joyful Easter

Let's have one, shall we?

We have a baseball game. It's Trans Day of Visibility. I made pretty eggs. Let's do the damned March 31st thing!

I made eggs yesterday, using a regular Paas egg dyeing kit and brown eggs. The colors turned out insane. For some reason I'm really attracted to the goldenrod one, even though readers of mrsguy are aware that it is my least favorite Crayola color. The magenta one turned out streaky and beautiful, but the most stupendous one is the purple.

I was trying to recreate the color from last year, where I mistakenly made a black egg. I had no idea how I did that, so I just tried some stuff. And there were imperfections in the egg and maybe I sat the egg in the dye before it had completely dissolved. I don't know what led to this peacock egg, but I could not stop looking at it. And photographing it. So lovely.

And today I'm not seeing my mom. For the first Easter in eons. Again, I do not care about Easter and holidays are for other people, so I have had to make it nice for others (mom, my sisters) by making an effort. After 2023 I said "No more". I should have said no after 2022, but who knew? Honestly who knew that she'd still be kicking ass and taking names in 2024? I just consulted the magic 8 ball, which says that she *will* die this year.

Lest we think that Easter is a completely lost cause, I remind you of the best Easter in guy family history which was 2017 in Bautzen.

Let's make it a good one.

Friday Joy

I now understand the small and big joys of those going through cancer challenges. It's probably a joy of this week that his doctor said he won the biomarker lottery by being a candidate for immuno, chemo and targeted therapies. 

Not a joy that the dr called Thursday night and talked us into going to the ER, an hour away, because he thought mrguy may have had a heart attack. 

Joy that the dr was wrong and my husband did not have a heart attack and that after testing we know that his heart is actually normal. 

Definitely a joy that we got his nausea under control this week, the day after he complemented me on my fine choice of barf bucket for the long ride to the hospital.

Not a joy that a can of water burst in my bag at the same time a 30-day supply of my anti-anxiety medicine spilled in same bag. Currently drying out the pills and the bag.

But an amazing joy this week was a gift basket put together by my teammates at work, who I have worked with for 10 to 21 years. Fun, silly, tasty, weird items, and items with meaning. Stuffed animals, candy and snacks from the Japanese supermarket. Vintage cat postcards, a book by Jack Paar and a guide to sustainable mending. Magazines about cats and Kate Middleton, and a selection of items from our snack cabinet in the archives (diet coke, Swedish Fish, Gardettos, Goldfish). 

I am overwhelmed by their love and support. Time for a diet coke. Mockingbirds are talking outside the window. Mrguy let me feed him breakfast. Today feels great.

Another Damned Day

It's ten minutes to two in the morning. I'm eating a lightly chilled pumpkin cheese tamale that I brought with us to the ER and I'm finally realizing that we are probably not getting a hospital room this evening. Mrguy is resting comfortably. I am freezing my nuts off and I have booted up my computer for warmth and company.

The day started out on a good note. More chemo! Only someone didn't schedule it properly and the appointments are a week too early. Our appointment next week will be across the bay instead of nearby. So mrguy got hydration instead. And this was great, all in all. Plus the doctor said we'd "hit the lottery" with mrguy's biomarkers allowing us to have targed and immunotherapies along with chemo.

Yay! And we're done with out-of-the-house cancer appointments until next week.

The phone rang at 7pm. It was the oncologist. He wants us to go to the ER. Across the bay. Mrguy's got some elevated heart enzymes that he wants to have checked out. He thinks mrguy (who feels fine) has had a heart attack. We get in the car and drive an hour to the hospital. 

I have a meltdown trying to park. I literally am crying trying to figure out the parking. The valet walks me to a parking space as I drive behind her. This sucks.

Turns out that our oncologist wants to check out mrguy for heart stuff. The Herceptin is hard on hearts, and that's one of the miracle drugs. And his circulatory system is all out of whack with blood clots. He's getting admitted. There aren't beds yet. Sound familiar?

It's super cold in the room. I got us more blankets, because it seems like we are going to be here for a while in the ER. There aren't any beds right now. The nurse, Maggie (real name) insists that beds can come available at any time. Bed Management will contact her when one is ready.

I tried sleeping on the floor but it was too cold. That was before I took my life in my own hands by using the all gender toilet, and its shit-flecked commode. And braved Maggie and her stern disapproval of my suggest-asking about bed availability before sunrise.

It is, in the words of a hearse-driving guy who used to repair espresso machines with mrguy, another damned day.                     

Another Busy Week!

Sorry about the time shift below, but this is what is happening.

Monday we went down to the hospital and did a swallowing test (no mechanical problem) and a pre-anesthesia test (cleared for takeoff).

But the nausea is real, people. He's been nauseated and not wanting to eat for weeks. We haven't been able to get a handle on it and he needs all of his energy for the treatment that's coming. Yesterday both doctors we saw told him to eat. I reached out to the nurse coordinator in our oncologist's office to say that the doctors are telling us that it's urgent that we get his nausea under control. The hospital doctors prescribed different drugs than our primary or our primary oncologist. And then one of the drugs, Ativan, did not make it into the Walgreens system. So I was calling our insurance agency, our primary oncologist and the pharmacy to try to get it.

I also reached out to say "Hey, please just tell me what to do and we'll do it". This worked. The nurse on our team sent a list with times and drugs that we had on hand that we could take. And she also sent a second list of times and drugs for when we got the Ativan. As soon as we started giving him Compazine, his nausea started to settle down. And we alternate that with Zofran and Ativan now that it made it to Walgreens (three days after prescribed) every 2-3 hours until bedtime.

Yesterday (Tuesday) was a good day. We learned that mrguy will also be getting immunotherapy -- Keytruda and Herceptin. His overall chemo cocktail will be 5 medications. I am grateful that they will give it all at once, rather than staggering it every other week. 

In addition, yesterday mrguy said that he was not as nauseated, and he asked for and ate half of a turkey sandwich and some soup, in addition to Boost and Gatorade. He seems to be liking the Gatorade, and hydration is doing him good. For whatever reason his blood sodium is almost normal (and we stopped taking the sodium pills, which were giving him the trots).

Today (Wednesday) we got up at 4:30 and went down to the hospital for his mediport procedure at 6:45am. Mrguy was so alert and a little talkative on the drive to the hospital, which was super helpful and cheery.

On the way home he started talking about his next turkey sandwich. He ate half a sandwich like a champ, and a big chocolate chip cookie. You have no idea how amazing that is and how much it cheers me. He seems to be feeling so much better. F his primary (and us, kinda) for not taking the nausea more seriously.

Tomorrow is his first official chemo day, and then we have to return the Folfox pump (and mrguy on Saturday). As I said to mrguy yesterday, this is the last week for a while where we're doing things for the first time. After that we're doing some of those things for the second time and that will reduce the anxiety, or mine at least.

What A Week

We had a second opinion last Friday. The second doctor agreed with the first doctor and said that time is of the essence. 

On Monday we regrouped with our first oncologist. I mentioned some symptoms mrguy was having and the doctor said “How do you feel about going to the ER?” and we said “We’re not into that idea” and he said “I’m thinking out loud here, but if I admitted you tomorrow you’d have a guaranteed bed, no ER, we could check to see if you have any infections and maybe you could start chemo as early as Wednesday”. That sounded awesome, so that’s what happened (except it was Thursday that the chemo started). We just got home from the hospital, and mrguy has had his first chemo, which lasted 48 hours. No lie.

Backing up to Monday, this was all predicated on our getting labs on Monday. We were having this conversation at 4:16 and the lab was 20 minutes away and closed at 5. We made it with 10 minutes to spare. Then we got to the hospital the next day and they didn't seem to have any of the information about mrguy, and that was super frustrating. Plus the guy in the next bed was kinda gang-y, a bit loud, and partially undressed cause he was about to use the shower, where he listened to the radio really loudly. The Stroke, by Billy Squier was playing "Stroke me, stroke me!!" Ohmahgawrd.

But since they thought mrguy was possibly contagious, they moved him to a single. They offered to make me a bed, but until they knew otherwise, if I was going to stay over I'd have to sleep in PPE. No thank you. So I stayed home, worked from here, and held down the fort.

A sweet friend sent us yellow tulips. I'm looking at them right now and they are beautiful. Another friend came to give me a walk. Clam came over and we didn't watch sumo but gabbed for two hours, which is not like us and was super great. Our "helicopter relative" checked in from Kona. I can't do what I'm doing without the support of these amazing friends.

In the meantime, nothing seemed to be happening. I couldn't figure out whether the doctors in the hospital had all of the information that they needed to treat him. The clinic and the hospital have two different user interfaces under one roof, so to speak. And I could communicate with the clinic and our oncologist but they weren't in charge once mrguy was in the hospital. Our nurse navigator on the clinical team was out on Weds. Her colleague told me to talk to the doctor in the hospital but didn't tell me how to do that. Thanks, Lady.

As I left the hospital on Tuesday I asked the nurse at the nurse's station for the direct number. She wrote it on a post-it. And that was the key. In the hospital you call the nurse's station like it's ER on NBC in the 1990s, and they call the doctor for you. Who knew? I thought I would lose my mind, and it was the first time that mrguy said he felt depressed. Why had we admitted him? But by the end of the day we had an appt for chemo in the hospital and the schedule for all of his future medical appointments appeared in the calendar.

A banner day. So on Thursday he started his chemo, which took a whopping 48 hours, which I thought was a typo when I read it...but was not. 

Yesterday I started pestering the clinic again. Were his biomarker tests in? Without good biomarkers that say that there are additional drugs that can targed the cancer, we are S.O.L. The report came back, and I gave it to our oncology nurse at the insurance agency and she said it looks like we have options. These are things that we would use on top of the chemo. The official word is whatever the doctor says, so we are keeping our fingers crossed. Or at least I am. Mrguy's just trying to get through the day.

Today was cleanup day in preparation for mrguy's homecoming. Did a big shop at the supermarket, during which time I had a panic attack. Came home and moved the cat box out of the bedroom and into the laundry room so it can be farther from our patient. Then I vacuumed the first floor of the house and catproofed the laundry room.

On the ride to the hospital (1.5 hours each way) I started to have a panic attack. So I called some friends and had a long chat during our drive, which was super helpful. I don't think I would have made it if they hadn't picked up when I rang.

Eventually, I got to the hospital and Tiger Brown and I picked him up. He later said that he wished his eyes were cameras because I was so cute with my leopard print umbrella, standing outside the car waiting for him. Sweet man.

He was doing everything he could to not barf on the way home but things being what they are, we had to stop by the side of the road near the airport so he could get it out of his system. Luckily I had some soft t-shirts in the back seat so he could wipe his face and some water in the front for him to drink. It was "our" exit, since the first time he and I visited my parents alone we had to stop in the same spot for *me* to puke, which is a story for another day.

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.

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!

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...

2024 Car Colors

For the past few years I've been noticing different kinds of car colors. During the pandemic, it was bright red metal flake and royal blue metal flake, just like Horus, mrguy's car. But as that began to fade, so did the palette. I found myself noticing and being attracted to some murky colors coming off the production line. Dull greys. Powdery greens, and colors that look fresh from the watercolor paintbrush wash jar (photo credit: Jane Jones, Illustrator).

A nice green-grey spotted on the street the other day:

Saw *this* interesting color yesterday, on the way to visit mrguy at the hospital. In the 2010s, this would have been sparkly, but the word of the day seems to be matte.

And this was highly satisfying. Tiger Brown is blue, and now every car company seems to have a powder blue of some sort. Spotted in the wild yesterday (at my mom's facility):

This first car is actually a Rav4, like TB, but has a silver bumper. Tiger Brown's is black. I think it must belong to one of the nurses because a) it's always in the lot and b) it has a US flag and Tibet sticker. Many of the nurses are from Tibet.

And finally, same parking lot, even Ford Broncos come in a Tiger Brown sort of blue. 

I kinda suspected when I got this color car that I would not be alone for long. Ivar was a 1996 or 7 Toyota Corolla in the year that every car was teal. Chin Ho was silver in the generation of silver cars.

And I look around me and wonder if I have a blue obsession. We painted the accent wall blue in the archives' conference room. We installed blue counters in our kitchenette. I have a blue bathroom. 

Yeah, maybe : )

++++ Update

On the way to pick up mrguy from the hospital I saw Subaru's version of Tiger Brown Blue. And also a different Ford Mustang blue. No picture, people, cause I was picking up my precious cargo, mrguy, who is officially in the house taking a nap, having bathed the hospital off of him. He is encrusted with cats and has a migraine but is doing pretty well.