Tag Archives: Life in general

A better question

In fact, a much better, and necessary question: is there any intelligent life amongst  the GOP? Because this guy doesn’t have any.

Those of you who blunder in here like moths to a light due to this comment: save it. I don’t usually go into politics here, but with GOP science deniers on committees specifically concerned with science and GOPers scoffing at climate change even when presented with evidence, and so on, it’s a perfectly valid question, in my opinion.

Sorry we couldn’t deliver your package

On multiple occasions in the past few months, those are the notices I’ve gotten from Amazon. The USPS handles what’s known as the “last mile” delivery for a variety of places, and out here in the boonies that includes us.: Fedex or UPS hands off to the USPS, who then send their rural route carriers out with whatever it happens to be.

The primary reason the USPS “can’t deliver” recently? Rain. I was expecting a package on Friday (that contained a couple of drives, among other things) and the notice from Amazon actually had a report from the USPS that the “address [was] incorrect”. This is complete bullshit, of course – after all, Fedex managed to find us just fine for part of that very same order, going to the very same address, on that very same day.

Miraculously, Saturday, the address was deliverable! Amazing!

The difference between Friday and Saturday? Friday afternoon and into early evening, it was storming, then raining. Both of the parcel lockers in our community mailbox were also taken up with other items for other people. Saturday, people had cleared those out and we got our package.

Today, I received another “Sorry we missed you!” notice from Amazon. What was happening this afternoon, about the time the mail is typically delivered?

Yes, another big storm rolling through. But there was no close lightning as there was when I shot the video for that other post. No, it was just rain, sometimes heavy, sometimes gentle, and sometimes slacking off, as it goes here in the great State of Florida in the summer.

In addition, we have a covered porch out front. They know this. Hell, they could see it from the community mailbox, even though it’s 200 yards away, if it’s someone who has never delivered here before, and all the regular people know our house. But no, it’s apparently too much effort to drive that 200 yards, hop out, and put the package inside the front gate on that porch.

So, hooray for Amazon Prime. Boo for the USPS people who think they’re going to melt or something and can’t be bothered to at least make a token effort to deliver a package because it’s raining.

Good morning campers

Our recovery of nameless guy’s server continues today, but I did implement part one of my overall plan to get some writing time.

See, the thing about owning a small business in the field I’m in is that not only is it very unpredictable, but sometimes it takes more than one day. It can take dayS, plural. We are in day three of this specific issue, and still going.

Fortunately, right now does not involve a ton of hands on for me while we wait, so I’ve been able to knock out a few other things that also need to be attended – payroll, for instance, since my employees don’t work for free, the bastards, and payroll taxes, because neither does the IRS or the country. Other “real” work things has filled the nooks and crannies, and I believe I am caught up in the routine, day to day things. Yay!

So maybe it’s time to type a few sentences into Scrivener and move that few footsteps closer to (one) goal. Progress is progress, after all.

More later, peeps. Be well.

The plan was

To write. Because it’s time to, as Neil Gaiman says, make good art.

I’d been moving sites around as we retire older servers, and finally got to bed this morning somewhere between 4 and 4:30. A few hours later, I get a notice to my phone about a customer server. Nothing is responding. I try to log in, get a login incorrect error. Huh, that’s weird, the client is unlikely to have changed the password without telling us. I try it again, same deal. Well, hell.

So by 7:30, I’m up and around and chatting to the client, and something very bad has happened – I won’t go into details except to say it is something so bad it makes your heart stop. The plans to write this morning and perhaps a second, smaller session this afternoon? Gone.

Off to the NOC to do some recovery on this client’s server. Spend a large number of hours reviewing the damage. Build a new machine because all his sites have to be transferred off the existing one. Deal with other client stuff throughout.

Finally, I’m shot at about 2-3 AM or somewhere in there. Crash out, wake up again at 7:30 (I am now typing this on Monday, the next day here), realize I have to go get blood drawn to check various things, drive out to the hospital (again) where I was in the ER back in February to get my records for that visit, as two previous requests to relay those records to Mayo resulted in the records not being sent because they didn’t have my fax although the transmission was good, then the records not being sent because the form I hand delivered to them, in person, wasn’t done (and a bonus: they lost my form and couldn’t find it when we called asking them where the records were), and then to Publix to pick up my meds.

Off I go right out the door, because the bloodwork has to be fasting. Do all of these things today, and I am back, in my chair, at my desk, at 10:50. That is not bad at all, and shows that focused work can be truly productive – and those tasks involved other people, as well. I wonder how much writing I could get done in three hours without people (real people, anyway) being involved in things I need to get done.

Sine we’re still dealing with this server, and some defacements of pages, and because I had to mow beeyard #1 as it hasn’t been mowed in three weeks, and because I needed to feed the bees and add a second brood box to one hive, and because work has been a steady drip, drip drip of things going wrong for people, no writing today. In fact, right now I am very sleepy, and if I didn’t have to transfer this guy’s sites off his server to the new box, I’d probably go hit the sack for a bit. I actually may not do that immediately, but run something that I won’t go into detail about, and then transfer the sites after that.

Now, I wait for something else to finish on that server, and I have titles popping in to my head, so I’m writing those down. Something productive in the writing arena after all! And the day has been productive otherwise, even if it seems like treading water.

Treading is better than sinking, though.

More later, peeps. Be well.

The lost weekend

OK, so it was not a weekend, and not as Oscar-worthy as the movie of that name (which is brilliant, by the way – you should watch it if you’ve never seen it). It was a few days during the week, and yours truly was back in the hospital with pneumonia. Again.

The  first sign of an issue: I slept for almost 11 hours straight, without waking up. Not normal for someone who regularly wakes up every 2 to 2.5 hours.  When I got up, I couldn’t really see – everything was sparkly, and not in the sparkly vampire sense, but in the sense of standing up too quickly, or getting heat stroke. So, we took my blood pressure, which was a rather alarming 64/48, then twice more because hey, you have to confirm these things, and the other two were not much different. I also stuck a finger in my handy pulse ox (O2) thing and it came back as 76%. Stuck it on another finger and got 80%. None of this is good. We called 911 and yours truly took a delightful ride in the ambulance to the ER. They gave me oxygen and fluids and finally I was back into normal ranges. But, I also got admitted because the chest xray showed lower lobe pneumonia, and they wanted to nuke me with some IV antibiotics.

And here’s where those sensitive to descriptions of bodily functions should stop reading. Seriously, if, say, reading about people puking gives you the heebie jeebies, stop here. I mean it.

Still here? Good. let’s have a little chat about heavy doses of antibiotics via IV, shall we?

The point of it all is to kill all the bad stuff, knocking it down quickly to a level where you can go home and take more antibiotics the way any normal person would take them, for x days. The problem is that those large doses of antibiotics kill everything – including the good little bacterial guys humming around in your guts, happily keeping things stabilized down there. You know what happens then?

Explosive diarrhea. And I don’t mean that in the joking, ha-ha sense, I mean that in the “OMG, am I going to make it to the bathroom before I shit my pants and the bed and everything between me and the bathroom” sense.

Fortunately, it’s kind of easy to tell from the gut rumbles when the time is close, so the astute patient hauls their ass out of bed and into the bathroom. This was made easier for me this time because they didn’t have me continuously hooked up to the IVs, so I was free to get up without having to take the IV stand with me.

And then, I got my independence from the hospital on Independence Day, July 4! I made my escape back to the ranch, and have two antibiotics to take, along with something they quaintly describe as being “for loose stool”. Thankfully, the doses are not high enough to cause me to have to race to the bathroom, so things are not quite as explosive as they were in the hospital. We should be thankful for some small favor every day, and right now, that one’s mine.

More later, peeps. Be well.

Crawling out of timesinks

As I said yesterday, I made a massive shift that gave me time I could assign to something else.  What was that?

I shut down pretty much all social media.

Now, to be fair, I was most active on facebook and twitter, with a small dabbling in instagram from time to time, and those three are the biggies, name recognition-wise. But I got sick and tired of facebook, and deactivated my account there. As a result, I have quite a lot more time to pursue other things, because those “I’ll just spend ten minutes checking out facebook” is never really ten minutes. You look up, and suddenly you’e been checking it for an hour or longer, wasting time that could be better spent on other pursuits.

I still have a page on facebook, since publishers expect writers to have a “platform” (and let me tell  you how I want to launch that phrase into the heart of the sun). Before I deactivated my primary account used to create that page, I created a new account for myself that follows nothing and friends no one. I then passed administrative duties for the page from the account I used to this new account that I do not use except to manage that page: an object lesson in how to both have a presence and not have a presence on facebook.

That was followed next by twitter getting the heave-ho for the most part. I created another twitter account to use as my author account (for branding purposes, of course).   Under that umbrella, I can do the author update thing now and again without spending hours at a time on social media throughout the day.

So, while I know that it’s necessary for me (the artist) to have a presence on these outlets, it really is not necessary for me (the person) to have one, and now I basically don’t. And I’m ok with that.

Sick sick

What I’d really like from the universe: a fairly long length of time of feeling good. Not great. I don’t need great. But I don’t need a once a week visit from bug-o-the-week. Today appears to be that day. The bugger of the thing is that I felt pretty good over the weekend, and yesterday was good, too: three shakes, two cans of formula. This morning, though, I woke up queasy, had some dry heaves, thought that did it, started breakfast (such as it is for me) and it’s been downhill from there.

Now, I have my handy bottle of a popular sports drink, one flavor of which (available around here) does not cause my mouth to burn. I’m hoping this will go down, stay down, and I can get back on my horse – or tractor, since I mowed Friday, and you can’t even tell – and get back to what has now become my rather unfortunate normal.

The very definition of

Fitful sleeping.

I don’t sleep much or well. This dates back to my high school days, that I can remember. Tonight, though, is one of those really bad nights, where I sleep for at most an hour, but usually wake up after a much shorter time, anywhere from half an hour to (what I’ve measured right now) twelve minutes. The strange thing about this is that my mind thinks it has been a much longer time. In the current episode, I woke up after twelve minutes and my mind figured it had been at least two hours. My gut chimed in with some gas bubbles escaping around the stoma for the tube, so here I am, feeding at 3 AM, trying to get that calmed down, and thinking it would be really nice to get four hours of uninterrupted sleep. Such is the life of an insomniac: some nights are better than others, and this is one of those others.

Life is complicated

The last post about these irritating medical issues was rather optimistic about the eating regularly again (by mouth) and using the feeding tube as a supplemental agent to that. We’ll discuss that, but first, a bit about the chicken I mentioned.

It was delicious. Seriously good, after marinating for 24 hours in a mix of greek yogurt, olive oil, crushed garlic, salt, and pepper. I seared those off on the stovetop in a hot pan, then transferred them to the oven to finish. While they were finishing, I made a tzatziki sauce to go with them, and it turned out fantastically – amazing, given that it’s been forever since I made one. I added extra garlic, and it was, quite literally, the best I’ve ever had. I’m not slapping myself on the back as the best cook ever, but I could eat a bowl of the stuff on its own and be happy, and even my mother, who is not normally one for this sort of thing, judged it to be be excellent. I managed some chicken and the rice I’d made on the side, helped along by the tzatziki to get it swallowed. One thing about dysphagia and mucositis, if you, gentle reader, have stumbled across this during a search: sauces and gravies are generally your friend. (Note: I am not a doctor or medical professional – do not take what I write here as medical advice of any sort, and check with your doctor(s) about stuff, not random things you read on the internet).

That was this past Friday. I think I’d had a couple of cans of the formula in addition to the chicken and rice, and an orange or two. Saturday, I had some of the leftovers, along with a couple more cans. Sunday, more cans. And we ran out of cans from the first delivery. This is where things start going badly.

We’d ordered more formula from the folks who handle that on Friday, and thought from the way they talked the couple of cases we’d ordered would be arriving on Monday. That turned out not to be the case. On Monday, I was feeling worse because I’d not been able to take down enough by mouth. I also had to head out to get some bloodwork done to recheck my kidney function, as of course one of the issues with not eating/malnutrition can be kidney function problems. They had been abnormal in the hospital, but had been improving once the tube was in place and I was on continuous feeding. Off we went, and they took blood and had me pee in a cup. Idiotically, I’d not even thought about the latter, but it makes perfect sense, of course: kidneys, duh! Fortunately, I managed to give them just enough to deal with. Then, back home, where I continued to feel like total crap because I couldn’t get enough into my piehole.

Tuesday, I had an appointment to finally get the stitches out of my neck, one day shy of a month after the surgery and three weeks past the original removal date. I was feeling so weak I wondered if we should call them and reschedule, but we decided they really needed to come out, so, with the help of my sister, who has been a rock through all this, mom took me up to the hospital, and my sister had commandeered a wheelchair so I didn’t have to totter around in my state to get to where we needed to be. The building where this appointment was has a cafeteria on the ground floor opposite the entrance to the part of the building where my doctors are, and the smell of whatever they were cooking was overpowering and made me ant to vomit. Through my reading, I’ve found this can be a problem for people recovering from things like this. But, we made it through that, made it through stitch removal, and the doctor said flat out he is at a loss about this lump. All the scans have shown nothing, the biopsy was negative, etc. – in effect, he’s unable to fix something that does not show a problem. If I’d had the energy, I’d have told him I knew that issue quite well, given the type of work I do. He suggested another PET scan – this uses nuclear tracers to light up possible cancerous areas, as cancer cells glom on to every bit of sugar they can get their greedy suckers on – but since I just had one a couple months ago, it wouldn’t be possible to have another for at least another three months. That’s fine, because even if it had already been six months, there’s no way I’d be able to do one right now anyway. So, the lump thing is a wait and watch thing.

Stitches out, we returned home, and thankfully, the case of formula had been delivered and was waiting for me. I immediately went back on the feeding schedule, or as close as I can get to it: five cans a day.

Now, the thing about feeling so badly those couple of days is this: it’s incredibly scary. When I weighed myself after getting home from hospital, I was 92 pounds. When I weighed myself this past Saturday, I was 90 pounds. That is the completely wrong direction, and I was shocked at that, because I thought things were going better. Clearly, they were not, and as things progressed, obviously not good. Now that I’m back on the feeding train, when I weighed myself today, it said 94.5 pounds. I have more energy, I don’t feel like I’m so weak I can’t walk, and while this does not mean I’m going to be able to get out to the gardens and start the huge catchup work that needs to be done, it does mean I can take some laps around the inside of the house. Moving is one of the keys to recovery: if you decide to put it off until you “feel better” you’re not going to feel better. Get up. Move around. Don’t try to do 50 laps on the first go. The first couple of days, I could only do two laps through before I had to sit back down. Now I can do more, and also do things like get the dogs’ water bowl up, clean it, refill it, and get it back in place. It doesn’t sound like much to most people, and the previously active me would not think such a thing would be a big chore, but it is a victory for me in my current state.

The mental side: I had a bit of an existential crisis during the days I felt so incredibly weak and shaky, and wondered – for the very first time – if I was going to be able to make it back from this. Even with the first cancer diagnosis, I never thought for a minute that I would die. But at the beginning of this week, it was something weighing heavily on my mind: was it possible that things were too far gone for me to recover? I’d no thoughts of giving up and ending it all, so don’t worry about that, friends and readers (in fact, it never actually occurred to me for an instant). My mental state is not generally fragile, as people who know me would be able to confirm, but because of all the things going on and the very physical signs that are so very easy to see of the condition I’m in, for those couple of days I went to the edge of the abyss of wondering about the possibility of failure and very nearly fell in. To be honest, it scared the shit out of me. And during that little crisis, what I thought was the stupidest thing ever (at the time) bubbled to the top of my mind: I had grand plans for the gardens and bees this year, which are now out the window. I’ve no idea why that came to the forefront of my mind at that very moment. Perhaps it was because these things are important to me, and it was an attempt by my brain to help me recognize these are things I would want to fight for, and not to completely give in to the hopeless feeling that had flowed up to envelop me in its grasp. It still felt silly and stupid at the time, and I do recognize that this is going to be another lost season for the most part, but this acknowledgement is not a sledgehammer driving me into a depression, just a recognition that this is the way life happens sometimes.

So, where do we stand now? I’ve just finished another tube feed, and in a few hours, I’ll do another. It’s very much like being on a newborn baby’s schedule: wake up, eat, wait a bit, eat, wait a bit, eat, maybe nap here and there, and so on. If that’s what it takes to get the weight back on my frame and head back to the healthier me, then that oddball schedule is what I’ll do.

Remember, if you are someone going through cancer treatment, or dealing with the aftermath of it, or having issues thanks to radiation, the gift that keeps on giving pretty much forever, or just in general feeling that you’ve lost the point of it all somewhere: life is worth fighting for. There is, and only ever will be, one you, in the history of the universe. Find something that is special to you, the unique you, and hold to that as your anchor. The seas of adversity may be rough sometimes, but hold fast to your anchor and do not let the waves overtake you. You, and the people who love and care for you, will be better off for it.

A note for those thinking that nothing is worth it, and waving a flag of surrender is the only option to whatever problems have invaded your life, be they medical or other: please talk to someone before considering doing yourself any harm. The National Suicide Prevention Lifeline is available 24/7, at 1-800-273-8255 if your friends, family, or medical contacts are unavailable or if you want to talk to someone anonymously.

Until next time, peeps: be well.

Tubing

Alas, this is not about floating leisurely on a tube at a place like Wakulla Springs (something you should do if you have the chance).

After that last post, and after the surgery to take care of my neck – they took some lymph and tissue samples to biopsy as they drained it, and those tests were negative, yay! – I wasn’t feeling too well. In fact, I’d not been feeling 100% prior to the surgery, but went ahead with it anyway as it had been so long getting it address, and I didn’t want to change any infection running up anywhere else. What I’ve noticed, though, is that I still have a lump there just below my jaw. Something to discuss with them when I finally get my stitches out next week.

Why the vast delay in getting the stitches removed? On the 13th of February, I was having issues catching my breath, and I was having sharp pains in my chest when taking deep breaths. To me, based on experience, that meant one thing: pneumonia. Since I was having some breathing issues, it was off to the ER – a shiny new facility one of the hospitals had built down in our area.

I figured they would take a chest xray (they did) see some opaqueness (yes), give me a breathing treatment (yes), then throw some antibiotics at me and tell me goodbye (no).

Because I’d had the surgery on my neck at another hospital, they decided the way to go would be to transfer me over to the ER of that hospital. I wasn’t exactly thrilled with the proposition, as the other hospital is in the inner city and is a teaching hospital. There’s nothing wrong with either of those things, but that generally means very busy and understaffed. But away I went, transported over to the other hospital.

I arrived at 9:44 PM in the ER at that hospital on the 13th. At about 3 AM on the 14th, they put me in another ER area, a holding pen of sorts for people who are to be admitted to the hospital, and where people wait for a room. My sister waited with me. And waited. And waited. Finally, she had to leave to take my nephew to school and take care of the soul eating baby, since her hubby had to go to work. So I waited alone, and my mom came up after sunrise to wait. And wait. Somewhere between noon and 1PM, they finally moved me into a room, where I would stay for over a week.

In the meantime, because I had mentioned I had dysphagia (that’s difficulty in swallowing) and because they decided, after taking their own xrays, that yes, I had pneumonia, they put me on a clear liquids diet. And that’s when things went downhill.

I’d not really been eating well before the neck surgery, because I’d not been feeling well. I’m sure everyone knows how that is: you don’t feel entirely well, so you don’t really feel like eating or you have no appetite, or both. I’d already lost a couple more pounds that I couldn’t afford to lose from before the neck surgery to that point.

We pointed out, multiple times, that I’d not eaten anything substantial for almost a week, and that the “clear liquids” diet was not necessary, since I could actually eat. The menu I really needed would have been what they term “soft mechanical” – that is, softer foods designed for people with dentures, but actual food. Didn’t happen. They insisted on tray after tray of crap I could not eat and i one case, could not even identify. Typical tray: apple juice, pudding (too thick for me to eat), jello (difficult to eat when you can’t really move your tongue because you’re missing half of it and missing a lot of the base muscle on that side), and broth. Plus, a Boost in a range of horrific flavors: peach, strawberry, mixed berries. The peach was the grossest of them, and all had “natural and artificial flavors”, which is simply bizarre: those items are all available, even when you’re manufacturing on a huge scale. The broth was generally just a chicken bouillon cube in hot water, which is also disgusting to me. On one of the days, the broth/soup was a gray, almost slimy batch of something that was impossible to identify. I even had my mom take a smell of it, and she bravely took a tiny taste of it, and she could not identify it either. Then, some sorbet showed up on the tray, a departure from the other items, and something I could eat a bit of. However, when the ingredient list starts off with water, sugar, corn syrup, and you have mucositis, as I do, this leads to the high sugar content coating your mouth with a film that takes multiple rinses to get out.

Short version: I ate virtually nothing off the trays. That means day after day of not eating anything. They had me on the usual saline/glucose drip, but I was worried that I was basically starving to death in a hospital.

On the third day, the gastro folks came up to talk to me about inserting a feeding tube. As I thought I would be getting out of there fairly soon, and returning to be able to eat now that they’d been pumping me full of antibiotics to fight the pneumonia (and I felt much better in that regard), I declined. But I continued to feel very weak because of the not eating situation. So, after getting a a good look at myself in the mirror one morning and realizing I was looking like those poor folks who were rounded up and starved in concentration camps (not a specious comparison: I had my mom take a picture of my back, and I had bones prominently displaying instead of being covered by even a small amount of flesh) I changed my mind, as it seemed the only way to be able to get a decent amount of calories into me since I wasn’t eating off the trays.

On Friday the 17th, I had the tube placed. PAIN! I was also dealing with constant nausea and periodic heaving – dry heaving, as obviously there was nothing in my gut to bring up. Routine doses of anti-emetics helped, but didn’t always damp down the random heaving, and the undercurrent of nausea was always with me. On Saturday, they hooked up a bag of formula to the IV stand, and hooked me up for continuous feeding from it. As I’d not eaten anything in forever, the feeding began at 10ml per hour and works up to 50ml per hour. I still felt weak, but I could walk around, even though it left me drained.

Finally, on the 22nd, I was cleared to be discharged. The first order of business was a shower, and when I weighed myself before that shower, the scale read 92 pounds. I am eating by mouth once more (hooray!) but also using the tube to dump cans of formula in so I can get more calories in to help add some weight and more importantly help with the energy issue. Spring is already here, and there are tons of things that need to be done here at the ranch. As I continue to recover and am able to eat a normal amount of calories in a day, I’ll be able to have the feeding tube removed to get that annoyance out of the way. I am terribly behind on the schedule I had mapped out for the season, but being here, and even being behind, is far better than the alternative, if you know what I mean.

One really, very good thing that happened somewhere in the midst if the terrible month that was February, however, is something clicking over in my brain that woke up my love of food and cooking. For many years now, I’ve cooked for a ton of people, but not been able to eat my own cooking. Between the mucositis, trismus (inability to open my mouth very wide), xerostomia (dry mouth; extreme in my case due to getting blasted in the face by radiation, and also the reason I eventually lost all my teeth), and the fact that the bottom denture  loses its grip fast when I eat because of the missing pieces there in m mouth, it’s been terribly difficult to eat real food.

But my brain started nattering at me that there should be ways around that, and I believe this to be the case: I am now putting together selections of things to cook that will serve other people but also myself. At this moment, there are chicken thighs in a greek marinade I whipped up at 4 AM this morning in my fridge. Tomorrow, those will be lunch, and even if I am not able to each a lot of a piece, I will eat what I can of it. It my be messy. It may be painful due to the trismus. It may be tiring, as I’m not used to chewing. In the end, it will be worth it, though, so I will persevere and continue to chip away at the wall that has separated me from the foods I love for over a decade now. I may not be able to “eat” a specific piece of food – a halo orange, for instance, I cannot chew and swallow the segments of. What I can do is work to get them into my mouth and chew on them to extract the juice and some pulp, leaving behind the dry segment that (right now) goes into the trash – when I recover, those will go to the compost heap. If that’s what it takes to get through this, then that’s what I will be doing.

So there you have it peeps: February, in a nutshell, was a month where time basically stood still and is best forgotten. When I finally get the feeding tube removed, forgetting it will be much easier and I will be able to move along with Mother Nature as she defines our lives.