Only 6 Days Later

Holy cow. 

On Monday we talked to an immunologist about the chemo rash. Then we got a call from a scheduler for an 8:15am appointment with a neuro-opthalmologist at the hospital the next day.

The neuro-opthalmologists were super attentive / vigilant, and pressed the urgency of mrguy's eye issue. They upped his brain pressure medication and mentioned working in coordination with our primary oncologist to determine how to protect mrguy's eyes during chemo.

On Wednesday we met at 8:15am with an oncologist cardiologist at the hospital. Since mrguy doesn't have any comorbidities the Dr. says he's on the team in case he's needed, but doesn't expect to be.

And we got some labs taken while we were in the neighborhood on Wednesday. We were home by 11am, as I recall, and I worked the rest of the day.

Today mrguy had a PET scan (at the hospital at 8:15am!) and while he was in the tube, so to speak, the neuro-opthalmologist scheduled 3 steroid infusions: today at 3pm, after the 1pm additional eye test, one on Saturday and one on Sunday.

For real. Today's no problem, since we're already here. I'm actually in the neurology infusion department lobby at the moment. But Saturday (5:30pm) and Sunday (6pm) are a bit of a bear, and give us no time off. 

But wait! There's more. While we were waiting for the 1pm eye test today, a scheduler left a voicemail asking us to meet with the Neurology Stroke department for a consultation with a nurse practitioner. It took 5 phone calls to figure out who called and who they wanted us to meet with. The initial caller didn't really leave enough info for us to figure it out without the help of others.

I'm glad that mrguy isn't a lady or a child, because that rules out our hearing from pediatrics or gynecology. We are hearing from everyone else.

I am super happy with the level of care we're getting, but there is so much of it and they're keeping us really busy.

Happy things: we saw the most gorgeous rainbow, close up, on the way down here. We saw white, yellow and purple lupine blooming. We saved half of our Mr. Pickles sandwiches from yesterday and ate them for lunch. The eye clinic bathroom has nice tile and smells like coconut.

And mrguy and I both appreciated the font in the elevator. That's what I like in a man -- the ability to appreciate a good font.

Not Today

We think that mrguy will be released tomorrow. Yay!

In the spirit of full disclosure, he had a crazy poo this morning and because he had the crazy poo the nurses said that they wanted to have him produce another one so they could test it for bugs.

This has happened to him more than once while hospitalized, and with the same result. He had been crapping his little heart out and they wanted to make sure that he didn't have an infection prior to his doing chemo, so they admitted him and tested the poo for every bug I've ever heard of. 

As in that case, when mrguy finally produced his poo after lunch today they took one look at it and pronounced it magnificent. It was of such fine shape and consistency that they could eyeball it and tell that he was not ill.

I think it was too late in the day for them to release him, so he comes home tomorrow.

May his colloidal waste continue to be firm.

Two Months

This is the information I sent to friends and family. To it I will add the following:
He had a lumbar tap which confirmed high brain pressure. They're changing up the blood thinners and trying to figure out which ones work best. He thought he was going home today but had some unexpected poop accident and now they want to test his poop for bugs. So I think I am going to have lunch with my sister instead of picking him up. He's bummed. 

Happy 2 Month Illness-aversary!

 

Summary (cause this will be a long one)

Mrguy is back in the hospital getting some stuff checked out. I am home with the kitties. It's all good.

 

Detail

Papilledema

Last week we learned about the eye problem Pappiledema (see below or you may google), which is caused by pressure in the brain. We went to the hospital for a head MRI on Tuesday evening at the request of our neurologist, and he called yesterday to kindly ask us to go to the ER  because mrguy has a small blood clot in his brain. So we drove to the hospital again. It was a gorgeous day, a gorgeous drive. We are trying to stay positive.

 

What Now?

Doctors of various disciplines are trying to figure out how to treat the clot and the underlying problem, which may be that the anticoagulant he's on might not be working as effectively as it needs to. This, in turn, may be causing the eye problems because the clot could be leaning on an important vessel. Anyhoo, he had a whole room of neurologists looking at him at one point today (students, doctors).

 

What's Good About It?

On the plus side, we're glad that we went to the ER at the hospital because he has had a lot of attention from doctors of all disciplines: neurology, hematology, oncology. All of the ologies! And that this clot was found through testing and not a stroke. Right? He'll probably be in the hospital for the next few days. In the meantime he is being seen by all.

 

Lumbar Tap

Later today they are going to do a lumbar tap (aka spinal tap). They'll take a needle into his spine and draw out some fluid. This will (hopefully) allow them to reduce some intracranial pressure (eye happiness!) and test the pressure of the fluid, which might give them some answers about what to do next.

 

Clotting

And also in the meantime they're trying to figure out which anticoagulant is doing the best job, and how his blood is clotting. I had no idea that you could test how quickly your blood coagulates. Weird.

 

His chemo is postponed until we figure this out.

God Laughed

So you know -- the last time I sent out good news there was an immediate change of situation. 

And we repeated that this morning. We were all excited about going to get chemo and how good mrguy is feeling, and how we're getting our bearings in this journey. And we were almost at our local clinic to get our labs for chemo tomorrow when the neurologist called to say that mrguy has "more" blood clots in his brain. Good news is that you want to hear this from a doctor and not because you had a stroke. 

After not getting the labs, we came home, set up the cats' meds and I made a video showing the precious family where all the cat stuff is becuase they might be their servers tonight. Then we grabbed our capture bag, etc. and got back in the car.

On the upside it was a beautiful drive. I got to spend time with mrguy. I brought some food so I don't starve...and a longer computer cord.

We came to the ER, and are getting tests. Hopefully they'll figure out what's going on with his brain and we'll deal with it and move on again. The only side effect he's having is the blurred vision that took us to the opthalmologist last week.

Genealogy Updates

After several months of waiting, the German genealogist got back to me. I am trying to determine the parents of my 5th great grandmother, who has an uncommon last name. I would really like to be able to tie her to Ferdinand Christian Touchy, but despite my research on him and his known descendants I can find no connection.

In the meantime, we have had no hospitalizations this past week, and mrguy is feeling much better and I've had time for a little genealogy and other puttering myself. I bought an Ikea shelving unit for the laundry room as a place to store extra cat food, cat litter, Ensure, and canned goods. It feels fantastic to get all of that stuff out of bins on the floor.

Another denizen of the laundry room is Ernst Gottlob's pastel portrait from 1775. I stashed it there until I had time to put it on the wall. I will say that this piece of art found a perfect home here with us. It's kinda ugly. It came up for auction in 2020 and nobody bought it. The fact that an unattractive pastel on vellum survived this long is kinda shocking. And somehow it made it 5,643 miles to our house in the US where an actual descendent of the artist could own and appreciate it. For a song. Did I mention that, inclusive of shipping, this thing cost me about $250? 

The other day after my Taskrabbit, Sarkis, left and I had put away many things in the new shelving unit in the laundry room mrguy pointed to the place on the wall in the kitchen den where I'd said I wanted to put it. He guided me in the pastel's placement, and I was way too lazy to get the real ladder from downstairs, so I got it as high as it could go. The goal was to get it high enough so that boy kitten couldn't reach. He immediately wanted to check it out. Hopefully he will not bring it crashing down.

And there it hangs, my mystery man gazing down on me, next to an Okiee Hashimoto print and a Katherine Sherwood.

Next, I have my eye on a portrait of Johnny Mathis.

Who Knew?

Today we have a bunch of cancer jobs, so I'm taking the day off. In general, things are going well. Mrguy has more energy than he's had since February. Don't know if that's due to treatment or eating or both, but he's puttering like crazy -- vacuuming, bringing in the garbage cans, getting his own meals, making me coffee. None of these are things I could have imagined a few weeks ago. I cried when I told my therapist how odd it is to feel this level of gratitude in the midst of such a cruddy situation.

Yesterday we went to the hospital for an 8:30pm head MRI. This is all due to the eye situation. I am glad that they prioritized this, somewhat amazed that the radiology department has night appointments, and glad that nobody told us they were admitting mrguy. I have a saying "Pack for capture", by which I mean pack as if they're going to admit you for some random reason. When the hospital is over an hour away, you can't just run home for stuff you forgot, so this is what I do now. I was very happy to put those items away once we got home.

Another moment of gratitude? Realizing that we had been to the radiology building before and that when we were there I was pushing mrguy in a wheelchair. Last night he walked with me from the parking lot.

Juicy Burgers Await You

That was a the slogan that an ad used to try to grab my attention. It did, but I don't eat burgers and juicy ones are definitely not my jam.

Where did we leave off? Ah yes, Chemo #2.

Mrguy did pretty well on Day 1. You have to return to the clinic 46-48 hours after the infusion to have them disengage the Folfox pump they attach to you, which mrguy has nicknamed "The Weevil".

Photo on this page.

Then he was soooper tired, as well as shitting his little heart out. On Day 2 his temperature was spiking up and down. There are rules about when to call in for advice and when the temperature is high enough that you go to the hospital because you are having a neutropenic fever. Having been to the hospital 4 times in 6 weeks at that point we were NOT INTERESTED in going to the ER. But you can die from an infection if you have the fever, so that Friday was a bit of a nail biter. I asked non-doctors for advice. Mrguy was pretty adamant about not going to the hospital, and I finally calmed down. First, the fevers weren't going up and up. They were going up and down. Second, a friend said to check his personality changes (there were none) and third, I realized that if I took his temperature on the "pillow" side of his napping head it could be 103f and on the non-pillow side it could be 97f at the very same time.

Noted.

His weight is a concern. I had managed to get his weight up to about 175 before the treatment via Boost and lots of encouragement and because his appetite, which has been awful since December, has returned. But we couldn't keep the calories in with the relentless pooping. And it was making him feel gross and depressed. We are now experimenting with no Boost and more eating, supplemental fiber and engaged participation in the problem solving by mrguy. He's feeling much better. It's clear that at this moment the chemo is doing something, because post Day 5 he has more energy. He has done things that were not possible on February 18th -- feeding the cats, emptying cat boxes, bringing in the cans from the street. He should not be doing the cat boxes (again, neutropenic fever)

We even did a non-cancer adventure yesterday. The drive-thru car wash. Mrguy's car had not been driven in months, and when the pollen season hit, the pollen sat on his car and became a solid mess. So we went to UPS and to the car wash. For $5 you get the regular car wash. But for $2 more you get "tri-color foam". 

Who would not want that? So good.

So the downside of the week is mrguy's eyesight. I took him to the optometrist, who diagnosed him with pappeledema, which is caused by intracranial pressure. Great! The neurologist is referring us to a neuro-opthalmologist. I will say that when we have done everything we can do and there is a thing happening in the future I feel like I can relax a bit. Also mrguy is so much better than he has been. 

It feels hopeful even in the midst of the uncertainty.

Chemo #2: It's a Beautiful Day

Things have been feeling pretty darned good in the almost week since mrguy has not visited a hospital. His appetite is good, nausea almost non-existent. We watched tv together for the first time in a month. He has watched whole baseball games. He played with his synthesizers yesterday. He did the taxes! He shaved! Regular guy stuff.

A friend made us a white miso soup and I made a yummy udon soup for mrguy with it. So good! So appreciated!

On Sunday, the Easter Bunny visited, in the guise of miss clam dip. 

In the morning she stopped by with some deviled eggs, which are mrguy's favorite. And she asked "Do you have any lemon cake?". As if we regularly do. It was cute. So later in the afternoon she arrived with a gorgeous cake which I am feeding mrguy with ice cream every night after dinner.

He has gained 2 pounds, according to the scale today. Not sure how accurate this is, since it's not the same scale that we used last week at a different infusion center in a different city.

And that is where we are. In a different infusion center in a different city across the water. We brought Gatorade and sandwiches from mr pickles.

Happiness: mrguy's sodium is normal. Finally! We credit food. Eating is a good thing.

Happiness: the Troponin is very low. 4?

Happiness: the oncologist said he's happy with how mrguy's doing.

Happiness: he said he wouldn't make us come back over here and go to the ER today.

Happiness: he said "Let's get on the path to long-term survival" uhhh, that's happiness right? I'll take it.

Happiness: a nice blue SUV on the upper deck of the garage

This is only part of the stuff that's going into mrguy today:

Last week I had a visit from the friend I went to Remain in Light with in December, which seems like a crazy long time ago. And she took home the pork egg drop soup that a friend brought over that we wouldn't eat. She came on her motorcycle and I have no idea how she got it home without spilling. She said it was delicious.

I hope that there isn't more to say today, because we've had more than our share of wrinkles. An hour to go and then we get to go home to the kitties.

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.

Ernst Gottlob Arrived

It seems like ages ago that I bought the pastel. It arrived yesterday, in several separately wrapped pieces. It feels weird to acquire something so celebratory in the midst of life that feels dire. Is it ok to be happy? It felt calming to work on putting this artwork back together while listening to one of my many hours of the Barbra Streisand audiobook.

It is either a pastel or an aquatint. I don't know how to tell the difference. It was described as being on vellum.

The coolest thing is the hanger, forged out of iron. It makes it seem as if this was once hung in an important place. The subject was unidentified, but may have been a government official of some sort.

The paper covering the back of the work must have been pretty cool. There are still remnants of it on the framing.

Here is the pastel itself, unframed. It's pretty beat up, but cool. 

When I held it up to the light it looked super freaky. You can tell more about how it was drawn by seeing it this way.

I am guessing that this is his handwriting, which is crazy. 

I realized that the original spacer that belongs between the glazing and the pastel was in usable condition, so I just went for it and repackaged the piece.

I washed the glass. It has a big wave in one area, which is super cool, and also includes little tiny elongated bubbles. It seems like it would be original to the piece.

And here he is put together again, sitting in our non-fancy kitchen. I'm not quite sure where to hang him. I'd wanted to put him in the bathroom with the reproduction of the painting from art.com, but I really want to see him. Not sure. For now he lives in the laundry room.

Another Health Update

And this is where mrsguy will turn into a cancer blog at times. Mrguy was in the hospital from the 17th through the 25th and was diagnosed with esophageal cancer. He's home now, while we wait for next steps. There's shock, fear, sadness, more fear. I have used all of my connections and information systems to try to bring myself up to speed, and try to move the process faster. This is my precious person!! My approach is stressing out the patient, and I don't know how to do it a different way, and I feel like I have my own needs. There is so much to know: about treatment, about expectations, about doing the myriad things that he does if his treatment makes him too sick to do them for a while. Surgery or chemo are no joke! People often are hospitalized from the affects of the chemo (fevers, infections).

A separate diagnosis from the cancer is normal pressure hydrocephaly. That has to be treated separately, and urgently. That may be partly behind the migraines. He will have an in-person appointment on the 12th. Oddly, his headaches had stopped for a while right before and during the first part of his hospitalization. Our primary says that this might be due to a lower salt diet. Makes so much sense.

A Health Update

Shortly after I wrote about his malady, mrguy and I were directed by an after hours nurse to head to the nearest emergency room. I have just finished a bowl of soup, at 2:20am, and mrguy is being officially admitted to the hospital.

In addition to his scores of migraines, he's had a cough for about 6 weeks. It's hard to notice a thing like that when you're sidelined with other kinds of crippling pain. And he insisted that he was getting better, but he also had a low grade fever that would come and go...

Anyhoo, this morning mrguy thought about going to Urgent Care. He said that he couldn't sleep last night because he felt like he was being choked. His throat felt like it was closing. I could hear from his speaking voice that his soft palate on the right seemed swollen. And toward the evening he started talking about how his carotid artery was swollen. And it was.

After we fed the cats, we called the advice nurse and went to the local Kaiser ER. They were super nice. His white blood count was only slightly elevated out of normal. They gave him fluids and antibiotics and a steriod injection and a neck CT and lung xrays. At the moment they think he has Lemierre syndrome, which is serious. He has a clot in his carotid caused by some sort of infection. They'll take more views tomorrow to see if there is a second infection in his lung.

He's going to be in the ER for another few hours before they can find him a bed. Our own system doesn't have one, so he'll stay within Kaiser. When he's lucky enough to go home, he's going to get a pic line and give himself antibiotics for 3 to 6 weeks.

Holy smokes, people. Hug your loved ones.

My Other Funny Valentine

On Monday I dropped a few things off at my mom's place. Depends, q-tips and another color of nail polish. It's that last request, on behalf of her caregiver, that made a trip to Walgreens take 20 minutes rather than 5. 

The yucky comments. The disagreeable expression -- what color will she not make me feel shitty for buying? In the end she said thank you and liked them all. But experience has taught me fear. Here's what I chose:

Pinky-white, just in case that was something she'd like. Pink, in case she'd go for something "loud". And her current go-to -- something that would look appropriate on a white person's artificial limb. Check out what was already her fingernails. And look at the bottle of polish on the right. Do I know my mom, or what?

Thank you, Sally Hansen, for making that quick-dry polish. Mom has a habit of touching her fingernails while they're being painted, and with the quick dry formula our caregiver has half a chance. The next time I saw mom, on Valentine's Day, she was wearing the pink that I never thought she'd go for. 

Valentine's Day was a very special day. It was the final day of Operation Fix Mom's Bed! The visit was scheduled for between 10-2. I got a call the night before changing that to 8am. He called around 8:20 to let me know he'd be there soon. And I got there before he did. Yay!! Despite a few blips (ex: new remote had no batteries but we had a stash on hand) the bed controller and remote both work now. Our caregiver was remaking the bed as I left, and I could see that she was using my favorite bottom sheet, the one where mom had written HELP in black marker. I love that sheet.

On the way out of memory care I could see that Big David had left his baby on the table outside mom's room. I hope he and baby had a good Valentine's Day afterward. He's got a wife, but baby is now his main squeeze, and she's got his room number written on the bottom of her foot. Everybody was wearing red and pink and things were looking pretty festive in memory care.

So ends Valentine's Day.

My Funny Valentine

I love him so.

His little girl cat loves him so.

He's had about 30 migraines in the last 2 months and he is exhausted. MRI shows no head full of tumors, which is great. The migraines have stopped for a few days. But he has no appetite and it seems as if every bug that comes our way attacks him. I wish I could help him feel better.

Bon Ton Roulez

Had a Mardi Gras dinner with a friend on Tuesday. I had the usual: blackened catfish with grits.

It was delish. She had a bananas Foster milkshake to go. And she became my first friend to ride in Tiger Brown.

We are going to continue our Gulf Coast of the Bay tour by going to the museum restaurant one of these days soon.

Yum.

Good graffiti on a gate near my parking spot.

Things I Bought: Ernst Gottlob

The other week I was looking at Liveauctioneers, as I often do. I decided to look for items from Leipzig. This is where my people lived for a few generations, and it's a town that mrguy and I have visited and like. So I ran a search and found a rather unattractive pastel portrait by my 5th great grandfather, Ernst Gottlob. His name was misspelled "Ernest", and that's why my saved search for his name in Liveauctioneers did not notify me. I bid on it and won. It was dead cheap. I'm sure it will be much more expensive with the auction house fee, tax, shipping from Berlin and custom packaging, but the base price is $216.

Sweet!

It will go in the lady bathroom, next to the copy on canvas of a portrait by him. My sister the painter was right, when she predicted that some day I would probably own a work by him. I'm psyched. I will be able to own something that he actually created one year before my 4th great grandmother was born. Super cool.