Dennis

I wish I could share a photo of Dennis, our local rooster. I don't know where he lives. I don't know what he looks like. His name is not actually Dennis, but whatever. He never shuts his effing beak, and he chatters all day like a cross between a rooster and a cartoon donkey.

This morning mrguy noticed an absence of Dennis. But he's back. We named him after Denise (also not her name), the gigantic parrot that the mom next door got as a pet during the pandemic. She was the bane of our existence for several years. Imagine that the already kinda loud neighbors add a parrot to the mix when we're all stuck at home. That was like a meat fork to the brain. And occasionally she'd bring Denise out into the yard for some fresh air. But then at some point mom seemed to move to another house with Denise and Chebelo (real name: Chebelo. wifi name: Chebelo). Mom and Chebelo come home in the mornings to walk the neighborhood but luckily Denise has not returned with them. Chebelo is very barky, but their new dog, New Dog, (not real name) came to be a very nice boy once he grew to adulthood. I actually enjoy it when he chews his squeaky toy in the side yard.

Anyhoo, when one annoying bird in the neighborhood was replaced by a rooster, we named him Dennis. Clearly a boy...

Today is a lovely day. A friend drove mrguy to his Saturday 5:30pm steroid infusion. That was beyond delightful. I cooked and I watched stupid shows on my new computer and thought about washing my car but didn't, and I drank beer. No beer again once mrguy is doing chemo this week. I have to be on my toes.

And that's ok!

This morning mrguy was a total goof. He sang a Starhawk song that I can't get out of my head, replacing the words "fleet as the roebuck his breath draws us near" with "he does the Robot, his moves draw us near". 

Then there was Day 2 in a series we'll call Huevos Estados in which I make mrguy a cheese omelette for breakfast and he cuts his omelette into the shape of various US states. Feast your eyes upon "South Carolina":

The eggs, by the way, were a gift from our friends who have lots of chickens (best chicken name ever? Aquanetta). They dropped off some eggs the other day on the chair on the front porch where we give away lemons to the neighborhood. The Rev came by this week and gave us some blood oranges from her native land of Los Alamitos. Her dad planted the tree many years ago and these oranges are precious treasures. Her mom sent along a beautiful note, as well, about how she's thinking of us. It's nice that there are moms out there wishing us well. My own is in looloo land, tormenting her captors.

Over at the Fun Factory, mom is up to her old tricks. The situation with our suspended caregiver is still up in the air, and the fill-in caregivers are distressing to her and her behavior is escalating again. The nurses at her facility are speaking directly with my mom's doctor to get her more drugs. In the meantime, it is illegal in our state to physically or medically restrain someone. I think of how those regulations affect my mom and the world around her. If she were allowed to be medicated, sleepy and in bed, tended to by her amazing caregivers, that would be a better life for her. Instead she is awake and spends part of every day arguing, insulting, striking and spitting. She is also venomous -- last week she spat in her caregiver's eye and it caused an eye infection. For real. She is the Kamodo dragon of parents and is furiously alive.

Impressive!

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.