Freedom and Determinism

Hey. It's me! Waiting for pathology in the offices of the world's tallest Mohs surgeon. I think this will be a quickie. But while I'm waiting, with a bandage on my face and a drippy nose, might as well catch up on the weekend.

It rained this weekend, which was glorious. The boy kitten thanked me for putting his favorite blanket on the sofa. Mrguy has been consulting Key Ideas in Human Thought, one of our best pre-Internet reference sources.

Saturday was Irish genealogy club day. Two hours of good times, hints, things to pursue. 

And then, a little jaunt with the rev. We went for a rainy ride and some hot tea in Sugar City, where mrguy and I got married. That's her fetching elbow on the right, and the bridge in the distance on the left. We drove past the old old place. They've painted it blue. In the window? One of the many neighborhood cats in windows in that town that are distantly related to our old cat, nose. Nose and eyes were, themselves, spawn of a neighborhood ragdoll, mrbrownballs. We didn't get nose until we moved into the house next door to this one, so it's nice that it's now populated with one of his mishpoche.

I totally forgot to mention that our friend from the extinct ukulele band came over on Saturday night. What a treat! He just moved to our town and we're excited.

Sunday was a bagel and lox feast at the house of that nice guy's brother. We got to talk a little bit by ourselves, but mostly the day was spent in stories of their close-knit community. They were so lucky to have one another, and it seems like that nice guy's mom was one of the neighborhood's adhesives. She drove the kids, she edited the newsletter, she was the person who connected and networked, before that word existed. I wish I'd known her better, which is the desired achievement of every memorial.

Her friend had a psychic connection with the livingroom carpet.

The spreads were divine. I even ate my first chopped liver.

And now...we wait.

Vacation -- A Saturday

Ask me about Twix Head Spa. You can find their videos on YouTube. Also ASMR. And autism.

And now that you did, yesterday was rough. The murder of Alex Pretti happened. Multiple eyewitness videos documented the incident including, presumably, his own. That's the second ICE murder in Minneapolis in a week. It's easy to feel helpless in these times. Also guilty, because it's the first day of my vacation and we are going to Hawaii. But I located the scheduled protest locations in Honolulu, and am bringing cardboard and some markers in my suitcase.

I was too depressed to do much. I worked on my vacation list of things to do. Then I went to get a mani-pedi because I knew the result would make me feel more human. My usual place (the place where I've been a time or two) was busy so I picked a larger place that I'd never been to before. It was very nice.

I mostly like mani-pedis when they're over. There's the question of whether or not to interact with the stylist. There's the scrubbing of the bottom of the foot (I warned her that I might scream, and I clasped my face the whole time). Then there's trying to fiddle with your purse to pay without ruining the manicure.

All success! But it was a sensory extravaganza. There was soft female music playing. A song about a sweater that was polyester. And the world's longest ASMR video where they do things to a lady's head and hair. Endless, endless treatments. Steam, water, ointments, soaps, halo contraptions that are suspended over the hairline and shower you with tiny jets of whatever. Then the neck massage with a thin, smooth rock, and an arm massage. At one point I asked the manicurist if the treatment ever ends. I guess my expectation was that you'd dry off.

Occasionally she'd press a button on my chair and the uncomfortable lumps would move around on my back. Massage. I did try to lean into the experience, because you should.

As usual, I felt really good after the mani-pedi was over. But getting to that point is a sensory overload.

When I got home our dear friend was there. We hung out until late in the night (for us!). I fell asleep watching an autistic comedian and doing online tests about autism. She had me at clothing tags being too scratchy. Also I think her tone has affected the tone of this post. But I feel somewhat seen ; )

I woke up and told mrguy about the salon experience. It made him anxious. Maybe I'm making you anxious as well.

Is Minnesota the place where our next civil war will take place? I would not have guessed.

Prompt 347, About Senses

Prompt 347

On a Friday in the coldest summer since 1999

I do Pilates over zoom with my friend and trainer, with me in my tiny home office and her in Nevada. She gives me an excellent laugh, describing how she and others on her "I'm moving to Henderson" group responded to someone asking whether there was at least a cooling breeze in the evenings. For those not in the know, apparently it's like living in a convection oven. Also described as "The day is like pointing a blowdryer at yourself on high and night is like pointing a blowdryer at yourself on low." I ended our time together with more energy, less gas, and a reminder that she appreciates all of my weird stuff and I'm to leave it to her when I die. "Just put the clown shoes by the front door".

I drink the leftover coffee. I wish it were hotter but am too lazy to walk ten steps to the microwave.

The sound of a train in the distance -- it's blowing its horn as it moves through our city. I love the sound of a train so much that mrguy and I used to listen to train records when we were first together. "Steam or diesel?" we'd say, choosing an appropriate sound for the occasion.

A week later, I'm cleaning up this text and hear a loud train horn in the distance.

Argh

Him: I forgot to take my Neulasta after chemo

Discussion follows. I start wondering whether he can just take it anyway today. I go back to my laptop.

Him: Don't freak out.

Me: Do you know what is one of the most punchable things you can say?

Hawaii 2025, Day 3

Day 3 was Kaimuki Day.

Kaimuki is awesome. In my mind it has been the Brooklyn to Honolulu's Manhattan. A little funky, with some remnants of 60s businesses and street profiles. I will try to see if I can find out the name of the artist who made this tile mural that appears on the Kaimuki Professional Building. It appears over two different entrances. Edward Sullam was the architect. He also designed the Diamond Head Apartments, close to our hotel, where our friends used to live.

We ate at the Koko Head Cafe, which has moved from its original location to what seems to have been a bank. I'm sure it's a more pleasant place to work now, but the makeover left its spirit behind. Verner Panton-style pinecone pendants, tall booths that isolate you from the other diners, less Hawaiiana...it lacks. Also my favorite dish, Eggs Hāloa, is no longer on the menu.

Mrguy wanted to eat at Koa Pancake House, and we shoulda.

The Goodwill is still there in Kaimuki. Many a treasured item has been procured there. I got a big old scarf, in dark purples and bright pinks, and tied it in a bow on my head. Made me very happy.

The Okumura Building is hanging in there. I've been photographing it for years. It is now building full of local craft stores and a fabric store. The car that matches it is a super bonus.

Back to the car. Couldn't resist taking a picture of mrguy in his Reyn Spooner shirt as he passed by this vibrant bus shelter.

Then we went to Kaka'ako, to Hungry Ear. It did not disappoint. I bought some Japanese records and a record by Leon and Malia. I can't resist a 70s-era record with lots of inserts. Plus they said it was their most important record, and who am I to dispute this fact? Haven't listened to it yet.

We visited Arden Restaurant for happy hour and dinner. It was the easy thing to do, and it was delicious. The leftovers kept us going at a few points later on. I engaged mrguy in an exercise of "Where would you have a time machine take you if you could?" and when I said I'd like to go to Grossingers in the 50s, he said "You wouldn't want to be Hitler's girlfriend so you could off him?"

Why do I have to do the hard stuff?

Fenestration

I love this word, and fenestration is what is happening today. To be specific -- optic nerve fenestration. Mrguy is having an operation to release the fluid that is cramping his optic nerve. I've watched the procedure on youtube. It's fascinating.

A small reminder of how we got here:

• Some cancers make your blood sticky / hypercoagulable
• That led to thrombosis in mrguy's internal jugular vein (IJV).
• Which caused a  backup of the cerebrospinal fluid in his brain
• Which caused pressure on the optic nerve
• Which caused papilledema
• Which caused him to lose some of his peripheral vision

Our neuro opthalmologist tried to treat the papilledema medically, and a change in anticoagulant medication made the blood clots (more developed) reduce in size but the papilledema remains, so we have surgery today. The goal is to stop the vision loss. If we are really lucky he might regain some vision. If we're really really lucky treating one eye might help the other eye.

Our call time? 5am. I got up at 2:45.

But the word fenestration? So good. Comes from the Latin word fenestra (window). 

back in the day we used to joke that if something was really terrible we'd defenestrate (throw ourselves out of a window). Just because we liked the sound of that complicated word. So mrguy is getting a window cut in the sheath surrounding his optic nerve. And I get to sit around and write blog posts until the procedure is over.

Zzzzzz

Procedure over at 9am!

Beds

The prompt was to describe all of the beds I've slept in, and so -- 

My childhood bed faced my sister’s, and was positioned underneath a huge wall-hung wooden bookshelf. I worried about earthquakes in that bed, and laughed after my father left the room the night he spanked me through a thick pink woolen blanket with satin trim. When I had a bad chest cold my parents would dose me with neosinephrine drops, which they’d administer by laying me on the bed in their room, draping my head backward over the edge, nostrils to the ceiling. They’d take me back to my room and lift my bed into an angle by propping it onto a typewriter case. I loved the cozy well in the center of the bed that I carved out over the years, roughly circular, then oval as I grew taller.

I visited my sister once at her apartment when I was 4 and she was 18. She shared an apartment with a stewardess, and they lined the walls of their living room with white butcher paper so that they could draw on the walls. Her bed must have been slept in by hundreds of people. At night we needed to perch on the sides of the bed or face rolling into a hole in the center. To this day sleeping in other peoples’ beds creeps me out.

My mom would not let me take my bedding to college with me, but I did get new sheets. When I moved out of the dorm, I saved my money and bought a queen sized futon. Mom said that I was to buy an extra long twin (unspoken: harder to negotiate “the deed” in). I let her know that since I was paying for it, it would be my choice.

I wanted a different bed eventually. My sister had a cast iron bed, a double, that came in 4 pieces that fit like a jigsaw puzzle on the corners. She wrapped it in cardboard and twine and sent it to me via Greyhound bus. I bought my first real mattress, and I slept in that bed for the next 20 years, until we realized that we wanted more real estate and the mattress was kaput. It felt like sleeping on a lightly padded chain link fence, and wires were shredding our pillows. Guess it wasn't high priority!

We had a different, puffy bed for a while, graduating to a queen size.

Then a friend told us about her bed, advertised on our local NPR station. “It’s like sleeping on angel butts,” she said. So we bought one. Horrific. We felt old and our bodies hurt. After several adjustments and many restful nights sleep on our Ikea sofabed, we kept the frame and bought a new mattress at Ikea. It’s still in use.

For various reasons, including keeping cats separated, I sleep on the cast iron bed with one cat and my husband sleeps on the un angel-butted bed with the other two cats.

So ends the story of the beds.

Intriguing Medical Updates (Now With Update)

As readers of mrsguy may recall, I did my endoscopy on Thursday while M&R took mrguy on the long trek to the eye institute and MRI center. Results are not in yet.

But mrguy's are. The most recent vision field test was bad. However his brain MRI revealed some reduction in size of the blood clots. That is heading in the right direction, which is awesome. 

This morning bright and early we got a call from the eye institute inviting us to a consultation with the surgeon tomorrow morning. Our existing appointment was for July 18th, 3 weeks from now, which the head of neurology said two weeks ago that he was not cool with. "In Neurology we move quickly," he said. He indicated that if the next vision field test showed any further deterioration he was going to make things happen -- either eye surgery or the stent.

So we get up at 5am tomorrow because we will be driving in full weekday morning traffic to get to our 8am consultation tomorrow. 

We do not care. 

This is fantastic.

---UPDATE---

The surgeon was great. She wants to move quickly because his peripheral vision is worsening and once it gets closer to the center it progresses swiftly.

Mrguy's chemo is postponed depending on surgery scheduling. 

They're moving him back to the bogus blood thinner until after the surgery, we assume.

He had his labs done yesterday and his cancer marker numbers continue to decrease, which is great.

And the cat is having his abdominal ultrasound today. His lungs were clear last week and they are redoing the pathology just in case.

Trippin'

This big boy has a boo boo on his foot. We found him making bloody footprints on the floor a month ago and have been to the doctor many times trying to figure out what it's all about. There's a growth, and he bites it when he gets a chance, even after it's healed up. Argh. Last week our doctor complained about how bad his foot smelled. That was kinda funny. I ministered to him dutifully after that.

We had a recheck on Tuesday, and surgery on Wednesday to remove the growth, and he's been tripping ever since. At one point mrguy asked if we should be giving him some pain meds before we left him alone in the house to go to an appointment. "Not until he stops acting like that," I said. He was rubbing his head on the floor and acting completely loopy.

The day after cat surgery our nephew came to visit, and brought home-baked chocolate chip cookies, mrguy's favorite treat. One of the few cool things about his current situation is that he gets to eat cookies whenever he wants, in order to keep his weight up.

And one of the cool things about being a cat is that you go wherever you want and do whatever you want, even if you're almost 14, on drugs, and wearing a cone. Mid-week, mrguy found the big boy on the kitchen floor writhing around, having stolen a container of cookies from the counter.

Final thing, and this has become a meme this week in our home...

The cat's doctor for this smelly paw situation is from Eastern Europe and has a delicious accent. She's a bit of a tomboy and a bit of a goof. After the surgery the other day, she gave me a call. I wanted to know whether she had a notion of what the growth on the cat's paw was, so I said "Do you have a feeling..." She cut me off.

"NO feelings."

So good. All week mrguy and I turn to each other and say "NO feelings."

And For The Medical Stuff

You really don't need to feel obligated to read this post. I just need to work out my thoughts re: appointments we're having this week and what I think it all might mean.

Reminder: these are our medical concerns:

1. Super kill-y cancer. Currently responding well to treatment. PET scan soon.
2. Optical nerve issue / sight problem called pappiledema
3. Clotting
4. Normal pressure hydrocephalus (backup of cerebrospinal fluid -- csf)

Recently our oncologist took mrguy's case before the Tumor Board. They had lots of questions and asked for lots of lab work. This will come in later.

Lately we've been concerned with Issue 2. We see the neuro-opthalmologist every two weeks. She and the other doctors are working to increase blood flow to and reduce internal pressure in the optic nerves. The situation has improved a bit, and is sort of stable, but still majorly jacked, as we say in the language of learning. All doctors have said "No more Keytruda". A lot of the immunotherapy drugs have neuropathy as a side effect, and the weak spot for mrguy is his optic nerves.

But still -- Issue 1 is really important, right?

Issue 4 is being treated with Diamox and a beta blocker, and they did do a lumbar tap a while back and were sad that it didn't immediately cure the pappiledema but it did reduce the backup of csf at the time. 

And we're trying to keep Issue 3 under control with Eliquis, an anticoagulant.

Issues 2, 3 and 4 are related. Our current theory is that the clotting at the jugular vein started the backup of csf. And then the Keytruda hit his optic nerves when they were already fragile. But if we don't do something to reduce the pressure on his optic nerves, his eyesight could worsen.

Here's where the Tumor Board comes in.

I'm guessing they're wondering why mrguy formed extra blood clots in his brain when he was on Lovenox (his previous anticoagulant). And whether he's predisposed to more clotting. And what's the solution to the backup of csf?

So this is neurology week in the guy home.

Tomorrow we talk with the neurosurgeon. I assume we are discussing whether a shunt or a stent is a possible treatment for the pressure. At our last appointment our neuro-opthalmologist blurted out "I'd do a VP shunt. It's an easy fix unless he has brain cancer because it could get transferred to the rest of his body. But they can also clog." Ohgreat. Well I guess my question is whether the gut cancer could travel up to the brain. That would not be good. In that case, perhaps a stent would be helpful. And we'd need to know what happens if the stent clogs up.

On Wednesday we talk with the head of neurology re: brain stuff. No idea what the meeting is, but I like the way he communicates.

On Thursday mrguy has chemo, and during his infusion he will talk with our regular neurologist. Not sure why?

On Saturday we drive over the bay for his flushing appointment and pump disengagement. 

Oh yeah! The labs. The tumor-ers asked for lots of blood work related to clotting. It all came back negative except for one, which indicates a genetic blip in his makeup regarding clotting. 

To be continued. There was actually a viper venom test that I thought was cool-sounding but he was negative for it.

And This Is Love

When I read my friend's post on fb, I recognized it as true love. What a goof:

“And up on the main stage, give it up for Emilyyyyyy!”

and other things that I say, in a strip-joint announcer’s voice, when my wife is on the toilet.

There are things that mrguy has done in the past that fill me with that "Omg -- what? You are so messed up -- awwww" feeling. He really understands timing and (maybe) the fact that he's known as a gentleman. When he steps out of that role and says something outrageous it is just extra funny. He is both my favorite wordsmith and my favorite audience. The funniest thing he has ever said, and it is legendary in our home, cannot be repeated here.

This week has been caca. Mrguy's last chemo flattened him like a giant anvil or piano falling from the sky in the Roadrunner cartoons. I think I already mentioned how high his temperature was that first night. And he felt awful the next day, as you do, but then it just continued, his nausea never abating. When he doesn't eat it freaks me out. 

Turns out that some immodium might have helped. Sometimes you forget the simple stuff. 

Days passed with him in bed, making a brief appearance for coffee, but then returning to his nest. Again, unable to eat. Usually during the cycle we can get a Mr. Pickles sandwich or something, but this time the nausea went on and on.

Shoot.

The other day, after the revelation of imodium or perhaps just a matter of time, the sparkle returned. Yesterday there was an announcement that there was appetite. When I told him that I was thinking of making lasagne, then realized that I had two commercial frozen lasagnes in the...freezer, I saw him perk up for real. He really wanted me to make a lasagne. And so that's what I did, people. I made a freakin lasagne. He liked it.

Of course I wasn't exactly thinking about the times in which we live and now I have a giant meat lasagne that would feed a university water polo team and we have mostly vegetarian friends who would not help us eat this giant expression of love.

Here is the big mess I made while cooking:

Here is the beeeeautious lasagne:

And a pretty tidy kitchen afterward:

An Unusual Anniversary

We are sooo not good at celebrating things, and yesterday was no exception.

We took a lovely drive to the eye clinic for mrguy's appointment with the neuro-opthalmalogist. As usual, Dr. K., the Resident, gave us hope ("It's trending downward" is what he always says) and then his boss, Dr. B. said that it's stable. She has a tendency to say many interesting things in between the things she's supposed to say. So we learned that mrguy could get a vp shunt (venous peritoneal), but in cancer patients it could deliver cancer to parts of the body it's not already in. Or it can clog. And that the fenestration of the optical nerve we've been discussing can also close up after a bit.

Can't he just have cancer?

After a visual field test -- fate threw us a bone and the 1:30 appointment canceled -- we drove home.

Mrguy has had a sore throat since his last chemo, so it was a very long and quiet drive in traffic that let me conjure up all of my bonkers thoughts and get agitated and worked up. I was super stressed that he would not eat the lunch I packed, and that he'd forgotten his pills, and that I had a million errands when we got home.

So I dropped off mrguy, and went to the vet to get sweet boy kitty's latest antibiotics (does he have a sarcoma? or something else? he's been wearing the cone for weeks to keep his very efficient teeth off the lump on his arm). On my last trip to the vet I learned that one of our dear younger friends there is also a cancer wife now. She just got married to her boyfriend recently and now he's got Stage IV colon cancer. Argh. Hugs. Welcome.

Then to the supermarket, which is so different now. Couldn't find what I really wanted. Irony = the aisle that used to hold soy products is now an additional beer aisle. 

Then to the pharmacy for my own medications.

Then to our little market for guava juice for mrguy's throat.

Then some sitting and drinking beer. I found the latest David Chang live, where he was cooking for two famous ex-basketball players. I know nothing about basketball but I have a friend who likes basketball and David Chang, so I let him know. He booted it up and watched it while he cleaned the kitchen.

Mrguy pretty much slept from the time we got home, so that was our anniversary.

I love him.

Crab Cup

This is my crab cup:

It's by Angie:

I found it on the free table at work a number of years ago and made it my work coffee cup. How can you not like those oversized eyes on thin eye stalks? It gives me so much darned joy.

In March 2020, when we were told to find some work we could do at home and go do it there, I brought my crab cup home, sensing that my cup and I could otherwise be separated for a long time. It's lived here ever since. At home it functions as my beer receptacle during my Alzheimer's caregiver support groups which fall on the first and last Wednesdays of the month. It's impolite to drink out of a beer bottle during a support group, but if I'm going to talk about my mom and my wacky family in my free time, you bet I'm going to drink a beer while doing it. The crab cup is now code. I can tell mrguy that I'm using the crab cup tonight and he'll go "Right, it's Wednesday".

I love you, crab cup.

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.

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.

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.