Just When You Think It's Safe

Teen isn't doing so great on the health side. Sigh. I don't know. We've been battling one persistent issue that has gone through eight medications in the last year. 

They keep telling us it's going to be fine, that it'll resolve. It would look like maybe we had it and then no, no we didn't. Next med, same story. Rinse repeat. EIGHT times.

Unfortunately, I think she needs an ultrasound if not an MRI. There's some agreement on that from the doctor side now too so maybe it'll actually happen. (I would've done an ultrasound at least about 6-8 months ago. I personally feel they've left her to twist in the wind too long* and pretty much figured we'd end up where we are now. Unfortunately mom instincts aren't considered medically relevant or valid.)

And this other thing is acting up that we thought we had a lid on. I think it's benign, more importantly, the docs think it's benign, but it's hitting levels now that justify ER visits for folks who don't yet know what it is. Like, it's not cool. Benign doesn't mean asymptomatic. Since we're seeing new highs, I'm not sure what the game plan should be.

It's frustrating. 

*Ironically this is something where we're in adult medicine because there are no specialists here so she's getting the usual shitty runaround that adults get. In peds, with the folks we're working with, they would've done the imaging a long time ago. And in fact, the peds are the ones who are ready to step in and fix this shit.

Adult medicine is bullshit y'all. They deny, delay, dismiss, and deflect you right into hell. Is it the insurance companies? What? What makes it so awful? So hidebound? So quick to make patients suffer and so slow to do anything proactive? I wish I knew.

Thanksgiving with a Spine

Thanksgiving turned out well...probably the best meal we've had in years. I have no idea if I can ever replicate it. In my experience, there's definitely a magic of the moment that makes cooking a gamble.  For instance, last year, I'd had spine surgery right before and we had a grease fire in the oven to boot. Last year, there was no magic lol. It was all chaos on fire in a dumpster. 

I didn't do anything special this year. Just went with the classics. But the flow was with me. The meal came together effortlessly.

Everything was very basic. Foil on the turkey, no basting, no brining, just some herbs, butter, and stock at the bottom of the pan, and it came out perfectly. I made a simple homemade cranberry sauce, no add ins, and honestly, it was brilliant. 

You know, sometimes I think we get recipes with fifteen different ingredients because people are trying to make a name for themselves. Like, if I started a food blog and told you to just do water, the exact right amount of sugar, and year old frozen cranberries, you wouldn't listen. I have to have a SECRET, right? 

There's a lot of psychological manipulation in recipe and personal cooking brands (not to mention outright sabotage in the actual recipe, I've run into that a few times). I do have secrets and recipes no one else knows, but I also don't try to make things extra complicated.

The best example of food power plays I have is my husband had a college professor who caused him all sorts of petty grief including getting him pulled into the Dean's office. I won't get into the whole story because it's boring, but I want to make clear it was utter bullshit and the professor was really awful. 

I'm not the kind of friend/spouse who takes your side no matter what, If you screw up, I'll call you on it and then help you as much as I can. I'm not much of an enabler. I don't pander. So when I say the professor was the aggressor, that's what the evidence showed. Total abuse of power. (And it just goes to show how much emotion and power dynamics go into situations...they warp policy and logic all too often.)

Anyway the point is, I made my crackle top molasses cookies for the class. I am often told I could sell these*. I get rave reviews. All the time. Meaning the professor begged for the recipe. Begged and actually pestered. And I refused because they'd been such an asshat. My personal code is no cookies for dick taints.

Oh, another one. My one in-law won't give me their cheesecake recipe going on 30 years now lol. 

There's all sorts of psychological and interpersonal dynamics that go into recipes and food, and given there's big money in building a food brand, you can get some skullduggery as well. It's easy to forget how much of the content thrown at us is marketing something and they will do almost anything to make it work. (See also Balenciaga's latest 'we had no idea even though we spent months working on the obviously problematic details and they went through several layers of management approval without anyone noticing a thing so clearly it was NOT by design at all you see' scandal.)

But anyway, the turkey wasn't dry. The cranberry sauce was the perfect balance of tart to sweet. We had enough gravy, although gravy boats remain frustratingly too small. The pumpkin pies turned out**. We outsourced the mashed potatoes and green beans. 

Very easy meal, nothing fancy, yet perfect. (Fancy with regards to food is sometimes just be an upsell y'all.) It was nice to be fairly functional with minimal health disruption. Wish that happened way more often.

*I'm not made to be a baker lol. But also these cookies are (oddly enough) sensitive to humidity and temperature. They're not reliable. The weather affects quality more than I'd like. To run a business with them...oof. It'd be super annoying.

**In fact, hubby bought a sweet potato pie and had a personal crisis. Why did I do that when you make the best pumpkin pie??? This pie is not your pie. OMG I have to eat this pie when I want to eat your pumpkin pie instead. I don't want this pie. So he gave the sweet potato pie to the neighbor we've gotten in the habit of feeding so he could focus on just the pumpkin pies. And I've had a request for a repeat ASAP because we are now out of pie. 

Glowering

 

My nerves are on fire. Absolute fire. The vaccine has caused my immune system (I assume) to literally go nuclear in my degenerative spine. 

It's never been this bad.

So now I'm wondering...is the cyst growing back? That happens sometimes?

Even before the vaccine I had increasing numbness. It's not the same degree of hazard as the pre-surgery numbness, it's hitting me in a way that's not a fall risk (so far) so it's different, but it ain't right.

Gah. Can I just please not have any more problems? I already have enough!

As for the fatigue...I've gained a tiny sliver of extra functionality but I'm nowhere near normal. 

Since the vaccine basically booted me back to the beginning of my covid recovery, I'm guessing I'm in for another 6-8 weeks of fuckery.

And I'm deeply concerned about the impact of any further vaccinations. If it's not going to prevent covid, if it's not going to prevent long haul, if even with the vaccine I'm up to the line of needing to go to the ER when I do get Covid, and if the vaccine is going to destroy me like this every time I take it, if it's going to come after my nerves every time, and my heart, and my energy for months...is the ROI there? Is it worth the suffering? I'm not sure.

Very frustrating. At least I can keep my sorry ass at home and hopefully away from Covid and I know enough to wear an N95 when I do go out. I know I can keep myself Covid free. It's the people I live with that are the risk.

Kidney ultrasound was clean. I still need to do some blood work, but hopefully an ultrasound was precise enough imaging that I won't be pissed I didn't get an MRI (or whatever is better imaging) earlier in hindsight. Sorry. I'm just leery of this shit anymore. Particularly when I have symptoms but all the testing is fiiiiine. However, that said, I'm good with letting this go for now. Nothing urgent seems to be happening and I have other things to do.

Work...I'm organizing some neat things. Holding my breathe they all turn out like I hope they will. The problem with being an innovative thinker is you go out on a limb a lot and sometimes it breaks. I tested what I'm doing on a smaller scale this past year and this should all pan out...but I'm nervous. I'm relying on other people to pull with me and that is the most difficult thing. People are flakey and managing their perceptions to navigate ego and agendas and maintain buy-in is A LOT.

Like, I don't need to be convinced by and large. If I see the benefit, I'll show up all day long. But most people need to be nurtured through the 'journey' which didn't come naturally to me. The task itself motivates me. Apparently I am super weird that way lol. So I've had to develop a skill set of keeping people engaged and on task and happy, sometimes in groups of a hundred or more. It's a lot. It can be tenuous and turn on a dime.

There's always the fun 'why is my name wrong? that's not my name' conversations. Well, we copied what you gave us.

Or, 'I'm a cat, why am I with the dogs?' Well, you told us you were a dog. 

And, 'I selected cat, but really I'm a unicorn. Put me with the other unicorns.' Well, unicorns aren't one of our options.

Plus, 'What am I?' Same as the last three times we told you, you're a cat. Still.

Lots of deep breaths going on over here. And some chocolate therapy while hoping if I give them grace, they'll give me grace when I invariably do something stupid.

Aside from that, I'm expanding some things, breaking through some technical intel barriers on another. I'm ahead  on several fronts through the collective efforts of this sort of mutual aid society I run in my industry. The big sharks are all paying for access to me and pretending they're not sharks and I'm acting like I don't notice while also paying for access to them to keep an eye on their bullshit which they also pretend not to see. They're worried I'm stealing from them and are surprised to find their IP isn't even a thing for us, we're so beyond them at this point. 

And also some of their IP is garbage and they don't know it (or they know, but don't care because profit--both types are legion). One blind spot I see a lot is people misattribute their success to the wrong thing and will actually design and sell strategies based on things that weren't the magic sauce. And then people can't replicate their results. Oddly, people will assume they're the problem instead of questioning the person selling them a shitty strategy. 

Always question the premise. Always. 

Most of the sharks have had to level up because of me...sometimes they even use my exact phrasing in their trainings. I'd go after it legally, but it would be a mess--they're better funded since their health doesn't fuck them up all the time and limit their options. But at least I'm forcing some good intel into things so people actually benefit.

Can you imagine charging people a mortgage payment for a master class, and then through simple negligence, causing people to lose their access to what your training is for? Like, I'm going to teach you to drive, but I'm not going to tell you about the brake pedal or how bad drinking and driving is, and I'm just going to let you slam back some Tequila and then crash in a ditch. That's the level of bullshit I'm talking about. And people just took it. Paid for it. 

Sometimes people scare me.

Trying to Wrap It Up

Saw the PCP  for the annual tap dance show and they felt we should do something with the kidneys given my history and the fact that I think I've been passing small stones here and there (or peeing out bits of razors somehow). Have an ultrasound coming up for that and then I'm done? I think?

Am I done? I think so?

Well, no. Not so fast.

Got boosted. It hit me like a semi on fire. My hips are all inflamed now. Sleep tanked because the hips hurt. Despite the pain, I crawled into bed and didn't move for a century. I completely stopped eating, which...

Someone mentioned, off hand, that ever since Covid, their appetite is all messed up--they're not eating. I'm pretty sure I have too many confounding factors (including medication) to tease out whether Covid is impacting my appetite or not, but after hearing that, I thought it was interesting that I lost all drive to eat after the booster.

And then I mentioned it to someone and they were like 'yeah, I've had people say they lost their appetite after covid.'  Huh. Weird.

The loss of appetite was then followed by an odd episode of pukey stomach flu-y something. Fun.

Anyway, I'd hoped the booster would boost me out of my post Covid funk. So far, no dice. In fact, I feel worse. Way worse. Bah.

I've lost pretty much all the progress I'd made to date. I'm good for about a half a day and maybe one big activity...going to an appointment or making dinner or working. I push the limits but one big thing is about all I can count on. By 3-4 pm I'm done. It's kind of like having mono again. It also reminds me of the pacing I had to do with adrenal insufficiency. Do one thing and rest and either recover enough to do another thing or be stuck resting.

Post booster life has been such a step backwards, I finally broke and called for an appointment at the long haul clinic. It's been over 9 months. I'm so depleted. I'm not recovering on my own. It's ridiculous. I'm so irritated that despite all the vaccines, and perhaps because of them, I still ended up in this hole.

Why is doing the right thing having such a negative ROI?

I mean, sure, I suppose this is better than ending up in the ICU, perhaps the vaccines spared me that, but I've been up to the line of needing to be intubated. I've been pretty damn sick with a lot of lung damage that took forever to heal. I have a frame of reference here. This recovery isn't any easier than that, based on my experience. It's different, but it's not less work or less disruption or less stressful.

I might be breathing better or have less lung damage than someone who ended up in the ICU, but you can't tell that based on how things are going. I'm still benched either way. I still pant like I had a severe asthma episode.

I'm not living a more functional life post covid just because I was vaccinated and stayed out of the ICU. 

Which goes to my big criticism of the vaccines. They aren't doing enough. I mean, I get we have no other option, but better than nothing isn't a level of efficacy that's going to get us anywhere. I know there's efforts to improve the vaccines, which is great, but it's going to come far too late for too many people.

I need a vaccine that prevents covid or at least prevents long haul and also doesn't destroy my baselines in the process. Where is it?

By the way, people get so mad when I criticize the vaccines. I'm fascinated by the fact that the narrative is required to be black or white. You must be either anti vax or pro vax and each extreme must be rabidly and rigidly defended. I had no idea how polarizing this was, that people had no ability to handle any level of gray when it comes to vaccines.

Well, listen, if there was a vaccine that was even just 70% effective at preventing Covid altogether, or hell just prevent long covid reliably on top of preventing hospitalization and death, we all know we'd abandon the current vaccines without a second thought and never look back.

It's not like what we have doesn't have A LOT of room for improvement.

Wanting something better or being unhappy with the vaccines' performance doesn't make me anti vax or not pro vax. I just want better. We all need better. What we have isn't going to get it done.

Meanwhile, ditch the masks and go lick the toilets at your nearest gas station, just lick all the public surfaces, French kiss everyone you meet, you're already inhaling their germs. The pandemic is over. Huzzah. Now everyone can have long Covid to go along with their three jobs that don't even cover rent!

Fucking hellfuck. This era is such an asshole.

Okay. Anyway. Can't do shit about it so let's circle back to weight for a moment. PCP weighed me and I was convinced the scale would show I'd gained a bunch of weight. The week before (pre booster) I'd had a really crazy appetite that only wanted sugar, sugar, sugar. No matter what I ate, I wanted more sugar. It was really atypical. I had a hard time controlling it...which is beyond abnormal.

 My control has been ironclad for years at this point because the tumors never allow any other option. (And yes, I eat all sorts of stuff but it's spaced out and the portions are small...I'm always tiptoeing around the liver. Yes, I've talked about having ice cream for dinner, but that's all I'll eat. I can't do a huge meal and ice cream frex. I could eat lunch and then do ice cream for dinner or skip food most of the day, eat very very lightly, so I can handle a small meal with ice cream after...that would work, but I can no longer eat like regular people. Haven't been able to for some time.)

(Things I don't mention much...the number of times I still hand half to all my food over to hubby. The meals I try to eat and suddenly find I can't. It's better than it was. I do eat, sometimes decent amounts even, for decent periods of time even, but it's not reliable. I have to be careful. And, as you've witnessed, if other health things go sideways, that just disrupts my intake even more. See also: Why I started Ozempic. Because I should've been losing weight and I wasn't.) 

This feral drive to eat eat eat was something I hadn't seen before. I actually struggled to stop eating. I just wanted to stuff stuff stuff myself with sugar sugar sugar no matter how liver felt about it. I was screwing myself.

Turns out my body wanted to attempt a period and it was all some kind of fucked up hormonal swing. Just what I needed. 

On the day of the appointment, I was super bloated and dreading the scale. I felt overstuffed, like bad taxidermy. My pants were tight. My liver was at a dull roar, irritated by the things I'd made it deal with.

Aaaaand I lost weight. Ha. WTF? I still haven't dropped a size though. I don't know. Maybe it's just muscle mass loss from not being as active since Covid. But I'm officially about 20ish pounds from--a no doubt very jiggly low muscle mass--goal weight now. 

It's just all weird. All weird all the time. I have no explanation. I am pretty certain that I really am violating the law of thermodynamics though. Like, it's not hyperbole.

Moving on...Teen has her knee braces. She seems happy, but I'm not sure how functional they are. I'm a little skeptical on how well it's all going to work. They look uncomfortable and difficult. If it was me...they'd be discarded in a dark corner somewhere. We'll see. If it helps her be more active, I'll be pleased. The jury is still out on whether that's the impact.

She says she's feeling better. Her joint pain is improving (although the hypermobility remains). The fever has gone down and stayed down. The medication seems to be working. Her heart is more stable. She's not back to normal yet, but at least she feels she can say things are improving.

However, we can't seem to escape the doctor appointments! We had another week with 5. I managed to cancel one and wrestle it down to 4. BUT NOW we're starting to put more pieces of the puzzle together and she needs to see another specialty. Oy. (And by the way, this was all the same week I was puking. OMG. It sucked!) Hopefully this next thing will just be a one and done spot check to rule stuff out.

The one really nutty prof now loves her and she magically has all As now and they want her to be in the Honors program. Which cool...but the teen's work quality didn't change, I just coached her through how to manage up. I'd rather there be more impartial grading going on, but I guess this is a good introduction to the real world. 

Sometimes it's not what you do, but how your boss feels about you. (I guess you could say the same about vaccines. Ha.)

Unfortunately, I didn't have anyone to explain this to me and I spent my early career focused on doing things well and being very confused as to why the boss was a huge dick lol. I eventually caught on, but I never liked it. See also why I'm self-employed. It's not just because of the health chaos. The difference is, if I wasn't interrupted by my health so much, I'd have taken everything way farther.

Co-op seems to be going better. She says they think she's funny (which she is, she has great comedic timing) and that the kids are "capable of doing group projects." They did a hacker competition thing and had a blast. 

The bigotry is in and out, but she's unflappable and has been learning to confront it head on. One of the kids came out as trans and her class group was ewww. She just looked at them and said 'how does what they do even affect you?' And they had no answer...

If we can get her health to stop yanking her around, this kid is going to absolutely slay.

Hordes of Rock

By the way, pictured below is the rock that crushed my hand. It's approximately 3' by 4'. It weighs at least 500lbs and likely more.

Hubby is now manhandling the remaining slabs on his own. As mentioned previously, he's incredibly strong and really good with the physics involved in moving heavy things. He's just not so good at working with a partner who can't match his abilities.

The next two slabs he wants to bring home are bigger than our trailer. I keep telling him to forget it then, but he just looks at me and says "Hush" with his pinkie at the corner of his mouth like he's Dr. Evil from Austin Powers. He's determined to own these slabs even though we don't have much idea of what we're going to do with them.

So, yeah. It turns out, we are collecting cabinets and also slabs of sandstone. And while we both like rocks and cabinets...I think we might be crossing a line here. We have over 50 slabs of varying sizes now (most are smaller than this one though). We'll use them around the farm in some capacity or another...just as soon as we figure out what that is. Stones like this are useful when you have property. We've just acquired them without much of a plan other than 'stone good, stone useful.'

I don't know that we need to risk tackling slabs bigger than our trailer, though. Maybe we don't need to drag every slab we meet home?

And yes, my hand is still swollen. Although to be fair, it's only been a few days since my last post.  I wonder if it's permanently bigger now? Like playdough that's been spread thin with a side of puff paint. The palm and back of my hand are just wider and thicker than they used to be.

It's been an odd injury. Very surprising and unexpected all around. I'm glad it wasn't worse, but it's definitely been weird.

PS: Random thing I forgot...teen won a prize for their Halloween costume. They handmade the whole thing (crochet, papier mache) and it turned out great. What was the costume? No one knows. Not even the teen. The inspo was some obscure music video with a lot of surreal characters in it. So I can't even tell you what it was. Interesting. It was interesting. And had a lot of pretty blue colors with sparkles.

This is one thing I love about homeschooling. It allows more time and there's less peer pressure and kids can go deep on things that really interest them. And it's always the most obscure stuff over here. Old E. European films was a big phase here at one point lol. Legal podcasts. Foraging. Bones. All things social hierarchies in public school wouldn't tolerate. 

There's no fitting in or dumbing down, there's only finding your passion. 

One of my big themes with the homeschooling has been find your power, leverage your power. We're not here to fit in, to make popular kids happy, to put up with toxic situations (which was what public school had become by the time we left). We're here to walk our own path and we want to travel it knowing our own power and how to wield it.

Door #2 on Let's Make a Shitty Deal

 All right. Finally saw a pancreas specialist. I'm so glad I did that as I have a much better understanding now as well as continuity of care set up.

First off, the MRI report was a little confusing and unclear which led me a bit in the wrong direction. The specialist went through the MRI images and reviewed them and explained what was actually going on. So things are somewhat better than they appeared in the report.

It's a branch IPMN.  These are most commonly found in men between the ages of 50-60 of which I am neither. 

It's approximately 1.5cm. Which, for reference, the clinic I went to starts getting serious at 2cm. Normally the threshold is 3cm, but they told me they're more aggressive.

The MRI report read like it was a more serious type of cyst that had started to spread as well as grow.

That said, an IPMN is still precancerous just not the most serious degree of precancerous it could be. 

I am still in the ongoing monitoring category, which was one of my questions.

And blood work has been ordered to check for cancer markers.

From there, if it continues to grow or develop what's known as 'worrisome features' but stays too small for immediate surgical referral, we get into an EUS with biopsy and potentially some additional, experimental blood work. That was another of my questions, was I at the stage of needing an MRCP or EUS? Based on the MRI report, I wondered if I needed an EUS, but no, right now, it's MRCP.

Or it's stable and we keep doing MRCPs (I just can't get away from MRIs...we keep adding more. Ugh.).

Or it becomes a clear candidate for surgery. 

My case will next go to their version of a tumor board for review, but the expectation is that the plan won't change. 

Based on location, if it ever needs surgery, it would be a Whipple, which if you don't know, is a major surgery with a major impact on your ongoing quality of life. The idea of this surgery is my boogey man. Death sucks, but it ends. A Whipple keeps you going, but it's a hell of a precarious slog.

However, prognosis is good. 80-90% survival rate. Mostly because of early detection and follow up. Which I knew from my reading, but I will say, I had to dig pretty hard to find that. The most common search results are stats on more advanced pancreatic cancers and the numbers for that are pretty dismal.

That said, IPMNs tend to reoccur. So if I ended up having a Whipple, another IPMN could show up in the remaining pancreas. There's clearly a systemic process involved, but they don't know yet how it works. So...that's not ideal.

Oh, and IPMNs can apparently hork up loogies and give you pancreatitis with their boogers. So I have that going for me...

More seriously, the horking of loogies raises some questions about some of my ongoing symptoms that they've always attributed to the liver. Now the docs have some raised eyebrows. Is it the hepatic adenomas or is it pancreas booger congestion courtesy of the IPMN? Was I actually having pancreatitis independent of the liver in all those ER visits? 

(I don't say much here unless it's really bad, but I have a lot of back stabbing from the GI system anymore. Oddly, sometimes it means I'm hungry. Other times, it means I'd better not eat if I value my life. Such a fun game...)

I told the specialist, I doubted we'd ever know because I'm so quick to stop eating the second I have symptoms, which slams the brakes on the worst of it so far. And the mucous tends to not create a long term obstruction, it tends to process through. So unless it makes me so sick, it overcomes me not eating and forces me into the ER and the ER does the exact right testing (aka an MRI/MRCP/EUS) or admits me so the hospital can do the testing, we'll never know if it's the liver or the IPMN. Fun.

Basically, they'll want multiple MRIs every year until I die or get too old to save. That's a fight club that won't let me go.  I'll continue to see what I can finagle in terms of reducing them as much as I can ( I mean, how much contrast can one body actually take?), but that will probably take a year or so to achieve...if it's even possible which I'm not so sure anymore. Depends on what the next sucker punch is.

I will say...I was never told I had an IPMN. I knew I had a pancreatic cyst, but I was initially told it was a pseudocyst and totally benign and I didn't have enough information to question it. All I knew was it would be monitored incidentally because of the liver so I figured if it made a move, we'd know (which is what happened). Then all of a sudden it showed up in the MRI report with a name and all this growth and it was spreading (which it's actually not). 

Better communication and better radiology analysis would have made this way less stressful. This thing has been there since 2014 and scanned almost ten times by now. It's unfortunate that this is how it played out. I don't feel I was informed at all.

Apparently, this lack of reporting is fairly common. The specialist told me they just had a patient who clearly had an IPMN dating back to 2005 but it had never hit the radiology report for some reason. 

That's...concerning. Yikes. Not good. For anyone.

The other thing I will say, the growth rate is a bit aggressive. They're not concerned as I think the location takes precedence and mine is lower risk (?), but I'm meeting some criteria for rapid growth out there. I'm not feeling antsy about it at the moment, we'll have to see what happens. I'm in that betwixt and between stage yet again...it's not good, but it's not bad enough so now we wait.

Anyway, seeing an expert was really helpful and added a lot of clarity (moral: don't just go by the MRI report), and my plan to compartmentalize and carry on stands. Phew. Once I get used to the idea that I'm now being monitored for pancreatic cancer, I get to party for a bit.

Also, I cancelled the third opinion. I'm torn on whether that's smart or not, but I seem to be falling within the guidelines more than not right now and there's not as much oddball nuance to things as the MRI report had implied. I'm thinking I'll just wait on the MRCP next year and go from there???

Oh, and...my oxygen bounced from 93 to 98 on their pulse ox and back again. Never had that outside of asthma attacks and it's only been since Covid. I didn't sleep well all week for one reason or another, so that's at least half of why I feel like ass right now, but the rest of it is this post covid fatigue whatsit that makes my oxygen bounce like a psychotic bouncy ball. I really wish it would go away.

In trying to get my normal activities up and running news...

-Hand is still swollen. It's improving, but yeah, it's been swollen for a long time. I'm using it pretty normally and it mostly doesn't hurt, but I am avoiding things like push up type pressure still.

-Kicking my own ass session #1 (KMOAS): Deep cleaned the house. Long overdue but OMG I thought I was gonna die. Stamina is still not where I need it to be.

-KMOAS #2: I loaded, unloaded, stacked, and threw firewood (not too heavy, not too big) logs with hubby. With inflation looming, we fixed the chimney and put in a new wood burner in the fireplace last spring in the hopes of saving some on the gas bill  this winter (and it's odorless inside so it doesn't aggravate my lungs). We also scored some raised beds for $10 so we carried those and placed them in the garden...they have the hoops already set up for bug netting which is awesome. Good functional workout, but I was done for the day after that. Again, stamina is an ongoing issue.

For contrast, hubby does all that plus mows two acres and paints the dresser that will be the bathroom vanity and runs to pick up some pallets that he loads and unloads by himself and then helps the neighbor move furniture and and and. Sigh.

-KMOAS #3 I've planted more irises and now tulips too. And yes, it IS getting late in the season to do this. Yup. Definitely not ideal. Oh well. I have about 1/4 acre strip that I want to look something like this someday:

I have about 20% of the skill set needed to actually do this, but I figure if I keep slamming flowers into the ground, something good will happen.

And yes, I've planted a concerning 'are you okay?' amount of irises. Over 70. I should've gone for 100...I feel like I half assed it now lol. But remember! I've got a massive area to fill. I'm hoping they'll spread from here.

And also yes, it cost a small fortune. Sort of. At least 50 came from a Chinese vendor masquerading as a "family owned US nursery." I'm not usually one to get suckered by those sham sites, but this one got me. I should've known something was up when I saw the crazy good price. When the receipt hit my email and was all Chinese, my stomach sank. 

I figured I'd never receive a thing or they'd send me plastic irises or something. But no, they did send actual irises. So not as expensive as you might think, but definitely strange and not recommended.

-I carried multiple ten gallon buckets of wet af mulch into the garden to fill my garlic pots. I can't believe it, but I'm still waiting on my garlic order. Ugh. Also that pissed off my snowflake spine so...Advil is my BFF.

-I'm eating relatively normally and consistently at the moment. It's very nice. I highly recommend it. Five stars. 

The Universe and Her ODD

So basically what happens is sometimes I bitch and moan on here and then the universe hauls ass to prove me wrong.

Since my last post about the six phone calls and inability to make any appointments, I've got a specialist consult for the pancreas set up and I finally got a hold of the hep's secretary and know what voodoo woodoo I need to do to make an appointment...three months from now.

Since the universe seems to be on a roll...

I never win the lottery. Ever. Never ever. A billion dollar lottery ticket would never happen to me. And my tumors would never spontaneously disappear. And everyone knows if you grow a lot of tumors, one of them is always cancer 100%. 

Let's see what she does with that.

Also, with regards to the pancreas specialist, since it seems I'm saying one thing (wanting a break) and doing another (making more appointments)...

1. Things are fluid. These posts are a small snapshot of a small increment of time and tend to be my reaction in that moment. There are moving parts that continue on and things and information change. I hope no one would begrudge me that?

It does create some inconsistentcies in the narrative though. I try to add clarity as much as I can as to why things change, but sometimes I don't see the forest for the trees.

2. The sooner, the better with pancreas stuff. I knew this, but I was trying to go for the break anyway. I wasn't ready to accept a change in agenda. However, the economics are undeniable. Early detection can have a very good prognosis. No one should waste an early warning, especially when it's something as serious as pancreatic cancer. 

I'm trying not to be dumb for the most part, but keep in mind, I'm just a flailing ball of stardust, so it's probably going to be a bumpy ride.

3. This was all sparked because I was uncertain if I would have any continuing care from the hep. It seemed prudent to cover my ass (or pancreas as it were) and not let myself become lost in the medical system yet again.

Unfortunately, this means I have to set up the third opinion as well. Upside: this way I'll see all my options and I can decide from there where I'm going to go with this. Downside: even more doctor appointments.

The rich irony is the one pancreas doc hitting my radar is someone I saw back when the liver tumors got real (if you'll recall they kept trying to blame my pancreas which is why I started there). Their pancreas research looks promising and may be useful for my case BUT when I met them five years ago they were a giant asshat who wanted to blow me off as having IBS. 

Like, they literally breezed into the room, sat down and the first words out of their mouth were 'you have IBS.' They had already dismissed me before they'd even seen me.

The only reason I got the MRI that finally revealed the full scope and severity of the liver tumors is because I responded with, "Cool. Is IBS why I can't eat, why I'm spiking a fever, and why I have new lesions on my liver that weren't there before?"

It's scary to think what would have happened if I hadn't asked that question. That it's down to the patient to manage up so the doctor does smart things. 

(Spoiler: I don't have IBS. I have never in my life sought out a doctor to complain about pooping beyond bile salt dumping after my gallbladder surgery. That hospital system has a weird IBS fetish that has managed to infect the entire department when it comes to women. My male relatives with their rare GI shit are treated completely differently, as in they managed to successfully get all their care at that system without ever hearing the letters I B S, a feat I have yet to achieve. I always have to bounce to another system. It's their damage, not mine.)

When the pancreas doc called me with the results of the MRI their voice was shaking and there was a screaming subtext of 'ohshitohshitohshitohshit' as they relayed the results to me. They knew they'd fucked up. Hopefully that was a wake-up call for them.

Anyway. So now I'm like...which doctor is real? Which one am I going to get? The one doing serious research or the one who has pretty shitty clinical skills and even shittier interpersonal skills???

And do I want to see them? Can they do a good job? Do I even get to be picky about this?

The other factor at play...there is no specialist clinic in my state for my diagnosis. I'm a little surprised as there are three major medical meccas in my state. It does get treated here, but the specialists who really wheel and deal on this aren't accessible unless I travel.

So I might end up having to navigate traveling for care. For the moment, I'll start at home. A whipple is a whipple and the hospitals here do a lot of those. The surgical treatment is standard, it's the decision tree as to when to do what that's nuanced.

On the teen front...co-op has settled down. The bigotry has receded. I don't know if it was some kind of  social display as the kids established the social hierarchy or what, but it's been quiet. And the teen is currently having a good time and doing things she wouldn't do in the absence of a peer group. This is what I was going for. Crossing fingers this keeps up.