The Latest

This is what the candles looked like in the light of day. Very different from each other!

And now this is the latest: mrguy's most recent scans are in.

"IMPRESSION:

1. No evidence of metastatic disease."

The other stuff is still in the report, the things I call "old guy stuff". He has an enlarged prostate and some arthritis in his neck, and a cyst on his "robust pancreas". Even his original tumor site, the esophagus, shows only "Stable trace circumferential wall thickening" which makes it seem as if it might be returning to its pre-cancerous appearance? Dunno. Mind you, this cancer often snatches you back at the slightest hesitation. But this is great. Mrguy has been worried. I have not. 

He seems so good on his good days. This morning he made us an avocado cheese omelette using his new favorite pan, and I imagine that right now he's in the man room dancing the tarantella.

Summer Like Winter

This morning I woke up, came upstairs and it was blowin' like stink, as our old sailor friend used to say. This is the best summer ever, weather-wise. The middle of the country is suffering with heat, and it is dragging the marine layer over our part of the world like a cozy blanket. The little boy cat is in his window, surveying the neighborhood, and mrguy is dressed for cool weather and working in the garage.

The junk folks are coming today to take away much of my mom's old furniture. The tyranny of chairs. Bye chairs! After they leave us we'll have a tiny splash of room in the garage where we can do further triage.

In the meantime, mrguy has still been blown off by the allergy department and will rattle their cage. He had a brain MRI yesterday, and will have an electroencephalograph tomorrow. Hoping they find nothing, but we still have to figure out why his thighs itch and he loses control of parts of his body when he's being infused.

Tomorrow is filming in the archives. Man, do these people like forklift designs! I have to find an outfit and do my nails and think of things to say, in case they ask. They might just want my hands to point at designs. You never know. I am the designated pointer.

 

But There's More

I know a little boy who is waaaay cozy today. There is something about this particular blanket that came from my mom's apartment that is even better than the previous blanket. Who knew? He sees it, he meows at it, he gives it two licks and then hops on or next to it. They have a thing going on.

In other news, I am no longer afraid that he will die from eating a salad plate-sized hole in one of my sweaters the other day while Cack and Blick were here. I believe that today he pooped out the last of it. Sheesh. Then he begged me to chase him around the house. Then he was happy.

It's a quiet day here at the manse. I've been doing some genealogy and laundry and I might decide to have some fun repairing that sweater hole. I feel like creating something other than food (although I like that too).

The update on mrguy is that he's spoken with his oncologist and neurologist. The news is basically positive. He's in remission and the doctor is going to halt chemo until we know what's going on. The doctor suggested that we go to Hawaii in the interim, because they need tourists right now. So basically we went from mrguy is going to die of a stroke to 'okole maluna. The neurologist says he did not have a stroke, but we want an MRI. He only had Herceptin when he was infused on Tues. He's still feeling the effects, so he's trying to stay awake and lively until baseball time later in the day.

Genealogy is going well. I am deep into the O'Neil family of Navan. I'm figuring out their scenario, but I'm still unsure of whether Mathew O'Neil is my great great grandfather. Many signs point to yes:

• My great grandmother was an O'Neil
• Last place in Ireland was in Navan
• A Matthew / Mathew O'Neil was the godparent of one of the children in my family
• Oldest / one of oldest children is named Mathew
• Family story is that the O'Neils were millers. M. O'Neil of Navan was a dealer of corn and oats
• Bridget was insane and her intake docs say that her father was also
• Mathew was in Mullingar Asylum for a while. They let him out. Shortly afterward he drowned himself in a barrel of his own making

Good times! If you like family history, anyway.

What If It's Ok? 2025 Edition

This is what I have to remind myself on days like today.

Yesterday mrguy was in the middle of his infusion. We were feeling great after another clean scan and I'd gone to work, which is about 3 blocks away from where he gets his treatments. I got a call asking me to come over there. They couldn't tell me what was happening.

Today it is as if nothing has happened, but at the time it looked like he was having a stroke mid-infusion. His mind got jumbled while he was listening to a podcast, then he lost his ability to control his right hand. He took his left hand and rang the bell. When the nurse arrived he was unable to respond to commands. It passed quickly. 

He'd had a small version of this during the previous infusion. And after the last infusion and the one before it he had large fevers.

He took an ambulance and I took the car to the ER. Our issues seemed less than everyone else's, so it took a long time for him to be seen and attended to. He had two brain and neck CTs and then they sent us home. In the meantime the guy next to us who was sucking all of the attention in the ER was complaining about how racist it was that nobody was seeing him. They eventually arranged home health care and transport for him and he got to go home. There was nearby moaning. And the guy who went home was replaced by a lady with congestive heart failure who needed her meds tweaked. This sounded familiar from my dad's problems with the same thing. Except she needed a translator, who was a family member and later a professional translator. I was pretty impressed that they found an Amharic translator that quickly. Once I knew the language I was able to look up where she was from: Ethiopia. If only she'd been at the rehab facility where my mom went those two times. Everybody working over there was from Ethiopia. Reminded me of the kindness of all of the great nurses, CNAs and doctors who worked there. And out of thin air I was even able to remember the name of the doctor: Biranhu. One of the prettiest names I've ever heard. Anyway this inadvertent pocket photo sums up my state of mind.

I found us some dinner in the cafeteria, which was quite perfect. Turkey sandwich for him, caprese for me, and some upscale chips. I was very surprised to see that there were two different kinds of cracklins at a hospital cafeteria.

We were able to get home around 8:30. And now we wait. He had half an infusion and a stroke-like thing that only happens when he's getting the infusion that saves his life, and now we really don't know what to do next.

At least he doesn't have a brain tumor.

Nurse Navigator

I love our oncology nurse navigator. I want her to be my mom. So does mrguy. She lives in the midwest and is so soothing and knowledgeable. We only speak once a month, now, but there was a time when I spoke with her every day. Mrguy didn't even have the energy to speak with her for the first few months -- I remember it being a big deal when I brought the phone to the bed and she heard his voice for the first time.

Yesterday she said she might close our case. Mrguy might be graduating, because he's doing so well.

Not sure what to make of this. It's true that we know how to do cancer now, and that his numbers finally went down a bit again, and that they haven't found any observable cancer in the last year, but I want my nurse navigator. She says she'll always be there for us if we need her.

*sigh*

Next week is a CT scan. Hoping for good news. 

In Memoriam

We wound up this week's world heritage tour with a memorial. The setting was an Italian social club, and the memorialized was a person who was one of my favorite customers at the restaurant where I used to work. His lovely bride is an old old friend of mrguy. Such a great couple, with a son who attends Berklee. Attendees included people from all corners of my life, as I mentioned earlier.

I'm not sure how well I navigated the answers to why I was there and not mrguy. It's chemo week and his goal for yesterday was to sit upright, watch baseball and read a book. He's doing really well, otherwise. But if you're hearing me say that and I'm all cool with it and it's catching people off guard? I didn't know that so many people didn't know, so it came as an unwelcome surprise to some. I've had time to process and am happy to have every day. Really. But when the widow spoke about how she was supposed to grow old with her person and wasn't going to get to do that, I really lost it. Luckily I was in the back row, and mostly out of sight from people I work with as I bent into my kleenex and wept. 

There was a raffle in between speakers at the memorial, and I came home with a bottle of wine.

I mingled, I cried, I had to go. Met up with my new friend from the club for a beer. She is off for a few months in Norway, so this was a last visit of the season, so to speak. She had missed Scottish Night. I of course performed a full recitation of the events of the night. And then she told me about how she'd solved an irrigation issue at the local community garden. Suuuuuper interesting solution, directing rainwater into reservoirs in raised beds. The plants find what they need, reaching down into the reservoirs, and there is no evaporation because the water is underground. I wonder if we could do something similar for the island in the middle of our street. Just a thought.

A Week in June

I got back into doing the things this past week:

On Friday I saw a movie with a friend:

On Saturday my old workmates from the restaurant where we used to work 30 years ago got together for breakfast at the restaurant. The owner joined us and actually treated us, which was super sweet. We told stories and had such a great warm time. The food was delish. The restaurant is closing in a month or so and our old boss is retiring to garden and surf.

On Sunday I was able to clear out my home office, which gave me some peace of mind.

Monday was my first real day back at work after being mostly out of the office for a month or more. We got right back into it, doing 5 hours of oral history with the founder of the company. After work, a weaving class.

On Tuesday mrguy had chemo and then got a fever in the evening. We had the most pleasant ER experience you can have. There were very few people in the waiting room, we were seen within 15 minutes and got a room quickly. We are old hands at this so we each had our noise-canceling headphones. This was good, because there was a patient on a gurney in the hallway all night who talked loudly and nonstop, while being watched over by a security guard. Mrguy heard him say that he'd seen "Jim Brown and Adolf Hitler at the Warfield". The doctors found nothing wrong, but they gave him a chest xray to be sure, and also some infusions.

When you have a weaving class on Monday, everything looks like inspiration on Wednesday:

On Thursday I learned that my most persistent bucket list item will come to pass. Amazing. And at the club, we had Scottish night. I've learned that this is always the final event of the "season". Who knew? I had a great conversation with a guy from one of the visiting groups about his Titanic archive, digitizing historical collections and a little about the forklift collection. And from two other fellows I learned about their tartans. One tartan had a special color that was matched to some of his clan tartan that was dug up, somehow. It was such a beautiful red. Delish.

My brush with unfortunate masculinity came when I struck up a conversation with a young man whose hat I admired. Then I saw his sporrin, which was made from a badger. It was so beautiful. I love badgers. He said that I'd know his father if I saw someone who had an arctic fox sporrin. Once found, the father sat with me. He was a Fred Willard type, wearing both his Scottish regalia and a large quantity of oversized turquoise jewelry. It made for an interesting combo. I felt confused by our interaction because he kept gesticulating close to my boobs while we were talking -- not to grab them, but more flailing. I felt trapped, as the nice guys I met had left and Fred Willard and I were the only two left at the table. We were seated, so I ended up taking a defensive posture with my shoulder raised towards him. I just didn't want to make a scene while we were hosting this group. I also felt like this guy had been busting people's personal space for 40 years and he already knew. Eventually I just grabbed my stuff and said "I'm going upstairs, now!"

There was some beautiful bagpipery, and ceremonial haggis blessing, and the recitation of Robert Burns poetry. I have never heard so many "skoll" toasts! The Scots started on a higher pitch due to their relative youth and preponderance of tenors. Ours are a bit lower in timber. My goal is to start a "skoll" at the club some day. It's like starting The Wave. You know that SNL sketch from forever ago where someone claims that he started a particular wave? I wanna be that guy!

We had salad and haggis and soup and as the evening went on there were lots of songs of what I call the Shaggy Dog Song genre. Then the Ole and Lena jokes were offered by the Norsemen among us. It became 9:30 and the main course had not been served, and I had to work the next day. I was sitting in my preferred spot at the table, with the door to the hallway behind me. It makes me feel less claustrophobic. So I just put on my jacket, quietly picked up my purse, said farewell to Knut and slipped out the back hallway that leads from the kitchen to the entry. Escape! I'd had a great adventure, and enough for the night. I was a bit peckish when I got home.

On Friday I did 4 more hours of oral history with our company's founder. Then some research on a completely different topic, and then I found myself staring into space so I went home. I felt like I had completed things going into the weekend, and that is a fantastic sensation.

Today's excitement is a memorial for a friend. Back in the day he was one of my favorite customers from the restaurant. One of the few who treated me like he knew I was a person outside of the restaurant. His partner is a longtime friend of mrguy. The crossover is huge. He worked at a local radio station in his spare time, so there are people from there (including ms scandiwaiian), people from work, friends of mrguy...I'm a bit nervous about going to something like this without my man, but I gotta represent. Also people will be curious about mrguy if they know his situation. He's feeling gross after chemo.

After that I'm meeting a known Norwegian for a glass of wine. Whew!

Through The New Year May Joy Abide

Today was kinda excellent.

Mrguy and I took a trip to the clinic for chemo. We had an excellent visit with the doctor. Like us, he's a bit puzzled by why mrguy feels so great but still has a tumor marker that is rising. Because we're headed to Hawaii on Monday he gave him gentle chemo today and when we return he'll get a bigger blast with Oxaliplatin, which he hasn't had in a while. Also, the doctor mentioned possibly having a laparascopic surgery where the surgeon can look around and see if there is anything that isn't on the scans. Because the scans are showing no cancer. If things look good, mrguy could possibly be a candidate for surgery which was COMPLETELY OUT OF THE QUESTION when we first found out he had cancer.

Super interesting. That said, his tumor markers just came in and they're higher again. I have a feeling that the Oxy will punch it down. And mrguy can definitely withstand some heavier chemo now that he's more robust.

After talking to the doctor I left mrguy to do chemo and I did some shopping at Old Navy. Molto discounto! I bought a pair of jeans, a bunch of tshirts and a leotard for $85. Also it was super chill.

Then to the less scary Walgreens for a replacement lipstick. The color I bought is a little alarming. I wish I could find my original lipstick because it was so beautiful (and inexpensive). Oh well.

Then to the Thai takeout store at Peppermint Tree Plaza for a veggie banh mi and some papaya salad and what I lovingly call "tick pudding" -- a coconut pudding with random unexpected vegetalia within. 

Tiger Brown still smelled like daikon when I came back to her later.

After lunch I checked in with the precious family. Last week, during Rudolph night my oldest grandniece had mentioned that not a day goes by without someone in the family mentioning the ancestral Pink Panther doll. A different family member had claimed it when we were cleaning out my mom's house. Here is the original. Well I just couldn't let their lack of Panther stand, knowing that there were probably dozens on Ebay. It arrived in the mail yesterday and I am happy to say that they were really happy with the replacement.

And with that, dear readers, I wish you a happy new year. As I drove away from the market where I bought my evening's prosecco I heard the announcer on the radio say "...and from us at KXXX Happy New Year. Brace yourselves".

Good News, Bad News

So the good news is still good, but today when I asked the doctor what he meant by "complete remission" he said that mrguy was on the *way* to complete remission. I pressed him on this, since three weeks ago he said mrguy was in complete remission and that it was a miracle (while also saying that we were going to keep doing the same chemo) and he kinda backpedaled. Boo.

Also, mrguy's one tumor marker which was its lowest last week (28, with under 35 being normal), ticked up to 30, which is the first rise we've had.

Those numbers came in *after* our visit was over, so I can't ask about that. Again, boo. He hasn't had oxaliplatin for two cycles, so maybe he needs it. Again, it is still in the normal range, so I'm not going to sweat it.

All the news that's fit to print. Today we met the doctor for the first time in person. But it also meant that today's chemo took all day. We left the house around 9:30 and got back around 7:30. I did a bunch of genealogy sleuthing during the waiting time, and have found a new book, about food, that I have absolutely no recollection of downloading. It helped the almost two hour drive home go a little more smoothly.

Now we're home, the cats are fed, the cans are out at the curb and I have the yelling people (CNN) on the tv. I do not know why there are any republican strategists of color. 

Good night!

Joy. More Joy. Gotta Have It.

It's important to find the joy. In tough times, I have my question mark pendant to remind me not to catastrophize.

For today's happiness we have:

• The DNC convention, which was full of optimism
• Watching an indie film by a guy who I follow on fb. A film about the incarceration of Japanese Americans during the war. Clam accompanied.
• Mrguy's tumor marker numbers went down again!
• Mrguy South bought us tickets to see Souled American in Chicago in October
• The eye surgeon is very pleased with the reduction in mrguy's optic nerve swelling post-op
• Big boy cat's sniffles seem to be under control
• I bought a new painting that is beautiful
• In honor of my 24th anniversary at the forklift factory my coworker made my selfie into a Slack emoji for "Wooooo!" which became my celebratory cry for all of the accomplishments big and small that my teammates made during the pandemic and beyond.
• I got the lady room window open (it is perpetually stuck)
• Hearing mrguy say "It's straight up raining, yo!" and having it be true. Love some rain in August
• Precious nephew is coming over today and we are going to brainstorm clearing out my mom's storage unit
• Finding that I have two copies of my favorite Juan Guzman card. The one on the left was in my 2000 day at a glance. The one on the right was in my stash, and I put it in a new sleeve

Mr Medical Mystery Cat

I took the sweet boy cat to his regular vet on Tuesday and the oncologist yesterday.

The regular vet is treating his sinus infection, which is still ongoing. He has been having these insane sneezes that are more like sneezures. They sound as if theres a deflated balloon up there. The doctor knocked him out last week and rootled around up there and she said it looks inflamed but nothing worrisome. 

Then he came home and slept in the cat box for a week. Also -- back to litter made out of paper pellets.

We tried a different antibiotic this week, which may be helping and, oh, he developed an abscess in his paw, so I'm soaking it twice a day. It has now cleaned up.

I expected that we were going to start chemo yesterday, when I took the boy to the oncologist. Instead she said that he's doing really well, is such a nice boy, and she checked him out up and down and can find nothing worrisome. He seems fine, and she'll see us in two months unless something worries us.

So where's the lymphoma? We do not know. He has had lymph issues for most of his life, so this may be unknowable, but in a good way.

Also she asked about mrguy and when I told her he is in remission the shock was so great that she jumped. Of course she's an *oncologist* so she thought that was super fantastic.

And so do we. 

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!

What If It's OK?

A few months ago I saw an odd piece of jewelry at an auction and had to have it -- a beautifully outlined diamond question mark pendant. The flip side is an engraving of a four leaf clover.

I had a loop made for it so I could put it on a chain, and it has not left my neck since. I assigned meaning to the question mark -- "What if it's ok?" That's what I said to myself one day early on in this year of cancer and fear and juggling various concurrent maladies. I wrote it down. Sometimes I have to remind myself of this. I bring my hand to my chest and the pendant is there, and I remind myself that there is a chance that things *are* ok. It's so easy to think otherwise.

Last week mrguy had a PET scan. And a CT the next day, for some reason. And labs on Saturday prior to mrguy's chemo appt on Monday. The PET scan said that there were no worrisome lesions. And that there is no cancer in his esophagus. And all of his lymph nodes are clear. I read it a billion times. The CT report came in right before our pre-chemo doctor meeting. Also clear. 

Moments before the doctor appeared on video, the CA 19-9 blood report came in on the portal. Readers of mrsguy may recall that this is a blood test that measures free-floating cancer. Normal is below 35. The week after his first chemo, his number was 61,400something. An absurd number that I imagined was like a Raid commercial -- cancer trying to get out of every crevice once the chemo was in the system.

On Monday that number was 30.

The doctor says mrguy is in "complete remission".

Also, "I'm not supposed to say this but it's a miracle".

What now? We keep on keepin' on. He does the same chemo because it's working. He has his eye surgery next Friday. Beyond that we don't know what happens.

I will keep wearing the pendant, that's for sure.

More Cat And People News

I tried to post an ad for a shirt that says "Cat Ladies for Kamala Harris" on fb and was denied. It depicted a tabby cat in Rosie the Riveter regalia and pose.

 We have a Slack channel for cat people at work. Several of my favorite cats were affected by the layoffs that concluded yesterday. It's been so deeply sad. Half of my girl band was laid off -- people who I never thought would leave unless they wanted to. One of the company's biggest cheerleaders, who is like the beating heart of the factory, also left. It's the end of an era in a certain way. Everybody feels it. Yet our current forklift is our most popular model yet.


Amidst all of this crud the boy cat's doctor prescribed Orbax, which worked on his sinus infection previously, and he is officially bouncing back. Two days ago I was thinking dire thoughts about how he could barely breathe through his tiny nose, and today he is running around (literally) smelling things. It's obvious that he can breathe better. He's trying to bite his papa's chin, and he started trying to chew my hair. I'll take it! Such a relief.


This is the week of testing. I was not worried going into the PET scan, because I can tell that mrguy feels better. He's still hella weak, but no more coughing (some of his lymph nodes that were affected were behind his lungs, and that might have been the culprit). This week we had a PET/CT (mid-skull through mid-thigh) on Wednesday, he had a CT (abdomen to mid-thigh on Friday. Today we take the long drive for labs prior to having chemo on Monday, supposedly. The results of the PET are already in, and I feel optimistic. There are good words, like "resolved" for some of the things that had been cancerous. The brain blood clots seem better? Basically what you don't want to read is that there is uptake in a certain area, because that means there is cancer.
This is esophageal cancer, so that's the primary location. But in his case it's not a single tumor -- his version of EC is diffuse, and it had traveled pretty far away by the time we found it. That’s why it is considered Stage IV. And that will continue to be his stage, even if some day he is found to be NED (No Evidence of Disease). 

New news hot off the press is that the lymph nodes in his neck now seem clear. His esophagus still looks funky but "The previously identified uptake within the distal esophagus is not seen today". That sounds pretty good. And this: "Compared to the prior exam, there has been interval resolution of the previously identified hypermetabolic activity within the distal esophagus, mediastinal and right hilar lymph nodes as well as retroperitoneal lymph nodes. Today, no worrisome FDG avid lesions are identified." That would seem to indicate that there aren't tumors. But he didn't really have tumors, so we'll see what the doctor says when we talk to him on Monday.

My aggressively laid-back husband says "Let's leave it to the experts", and so we will.

The Seemingly Indestructible Cat

That big boy keeps ticking. 

In addition to mrguy's health situation, we've also been managing cat things. Our sweet boy has had a series of sinus infections, and then paw cancer. He had surgery to remove the thing on his paw and biopsy it. I took him out of his cone during breakfast and he savaged the incision and ripped out the stitches in a matter of seconds when we looked away for a sec.

Then we took him back to the doctor and she wrapped the paw. Mr boy was not happy -- stump, drag, stump drag, and we replaced the bandage a few times. Much to the surprise of the doctor, it started healing.

During this month he's had 3 regular vets and an oncologist because it's summer. Pet guardians, do not let your charges need complicated care during vacation season. Oy.

In the middle of this the respiratory thing came back and so he's being seen for that also. Cerenia and fortiflora usually do the trick but are not doing the trick. Now we're on a nasal steroid. The vet we started with is back from her vacation (she went on vacation after she did the biopsy. then we were seen by another of our vets who was one day away from her vacation, and then she handed off to our regular regular vet, then back to our vet #1).

Last week vet #1 handed off to the oncologist. She'll handle his respiratory thing and the oncologist will do the cancer. But first the oncologist wanted to do a second opinion on the slides. I got close to crying but did not while wrangling this.

Our regular vet is a client of Lab X, where the biopsy samples were being held. The oncologist uses Lab Y. Our regular vet is not a client of Lab Y, that needs the slides. Our regular vet said that the oncologist would handle the situation once I call them and ask for it to be done, and I gave my permission to our vet to release the slides to the oncologist. The oncologist said that they were not allowed to transfer the slides to Lab Y. I had to figure it out. Lab Y said that I needed to call my regular vet, find out where the slides were, and then...I dunno. I said that I'd pay for whatever and deliver whatever, as long as I knew what the steps were.

I called the vet. One of my friends at the front saw my caller ID and picked up. Oh thank goodness. She consulted with her manager and the manager untangled the mess. They got the slides in a few days, and on Wednesday I left work, drove to the vet, picked up the refrigerated package, took it to the oncology office (about halfway back to work), drove home and was back online working in about an hour and fifteen. The traffic gods were with me, somehow.

The next day I get home and mrguy tells me that there were actually supposed to be *two* packages of slides. The vet was sorry for the mistake and were going to drive the package to the oncologist for us.

I'm writing this down mainly because it's insane and I want to remember. But here's where it gets weird.

Our boy has a history of weird lymphatic system stuff. When he was five or six, the lymph nodes under his jaw started to swell. They took needle biopsies and weren't able to tell why they were swollen. They didn't seem to be painful but they were a bit disfiguring. They decided to remove them and biopsy and they never figured out why he had big old lymph glands.

Which brings us to today. The oncologist called yesterday to discuss the results of the second opinion on the slides. They're sure it's cancer, but that's all they know. They want to do more tests on the slides (an $800 value). Know that I have spent more than that in the last week on my kitten of gold. I asked "How would what you learn from the test change how you treat him?"

She tells me that their whole office is intrigued. As you can imagine, our boy has a fat file of info related to his crazy lumps and other medical history. She does say that this is a cancer, but the kind of cancer it appears to be moves quickly. In the month we've been dealing with it, more bumps should have been appearing. Not our boy. She thinks that it might be related to the same "disease process" that he had in his lymphatic system.

How's his appetite? Really good.

How is he feeling? Aside from the sneezing, he's feeling pretty well. The steroid nose drops are helping a bit. And he really does seem to be perking up.

What about the paw? It's healed, finally, but we have him in the cone so he doesn't rip into it again.

We've decided to watch and wait. Oncologist wants to see him in a few weeks, and we will take it from there. Gratuitous cat photos below:    

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:

Tough Week, But Whatever

This week we learned that the most promising of mrguy’s cancer drugs might be causing him to lose his sight. And that in addition to the many “-ologists” on our team we now need to meet with two surgeons: one for the brain and one for the eyes.

And one of the cats had tummy trouble and pooped down his leg and then tracked it all over the laundry room, dining room, hallway, dining table and the bills on the dining room table. That part was pretty funny — TELL ‘EM, GORDIE!!

It happened again the next day, to a lesser extent, but he was equally unhappy about being washed in the kitchen sink the second time. No bills were harmed on day two. 

On day three mrguy cracked me up by following Gordon to the cat box, just in case. All good.

That might have all happened the same day that they laid off 200 people at the forklift factory (including two bandmates and a former bandmate, plus a neighbor, and some people who I have worked with for just shy of 24 years). Who can remember? It’s a lot, People. 

And yet there was still joy to be found. Disconsolate but somehow deciding to ask for help for once, I asked a friend if she was available for a walk. She brought another friend and we did what I call the “buns of steel” walk, a steep staircase at the end of the street that ends in additional challenging (yet suburban) terrain. That, my friends, was the joy I found. Sweet friends who I hope secretly boast to their other friends that I make them do the “buns of steel” walk. They ask way too many questions on a walk, and I love them. 

I was this lucky a year ago but I just didn’t know it.

Addendum -- Incoming! Apparently Cack and Blick are using the long weekend for some spring cleaning. They found this item in their garage and shared this photo. 

I tell ya, man, branding is everything. I shared this post on a fb group and a friend from high school who I didn't recall was on that group shared her hopes for mrguy, and I invited her to do the buns of steel with me. We will be making a date.

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.