All posts by Annette

Intentions: 2020

People ask “What are your resolutions for the new year?”

I stopped making resolutions a long time ago, and for a long, long time now, greeting the new year has not been anything like turning a corner. It’s just more of the same, with a new date stamped on the calendar. For the past four years, I’ve either been sick, or getting over being sick, at the turn of the new year.

This year, thanks to losing my voice (primarily) and sense of smell via a total laryngectomy, I am healthy (mostly) heading into the new year. Since I’ve been relatively healthy since the end of April, when I had the Big Op, and now, I’ve had time to think about what I’d like to do in 2020. I say relatively, as I’ve had a couple of instances of what my docs call minor pulmonary infections, and what I call lung snot. Fortunately, modern medicine has graced us with antibiotics for these things.

As some of you know, I had wanted to participate in NaNoWriMo in November, as I had a brand new, quite exciting idea to write, back in early May, after I got out of the hospital with a hole in my neck. I knew most of the story, and over the next couple of weeks, I fleshed it out in my head and was confidant that a few other things I needed for it would come by the time November rolled around.

Then, the end of June came, and with that, one of our largest vendors announced a complete and total change to their licensing. That in turn required us to make a huge decision: to stay with it, or make a change of our own. Those of you who are clients will know this already, but we chose the latter.  This resulted in an equally huge, and quite sudden amount of work necessary on our part to implement the changes we needed to make.

There is an upside to this, as there is with almost everything: it knocked us out of a bit of complacency, and also resulted in other changes we decided to make in order to make things more efficient and to adjust a couple of our business models.

“What does this have to do with anything, Captain?”

A lot. Because it knocked NaNoWriMo out of the water, and except for a few days’ break here and there, we’ve been steadily implementing the changes we decided to make. When there are hundreds of servers involved, and all the work is hands on to do the migrations and replacements, it means everything else is on hold, because almost every waking hour is devoted to getting this finished. It also means 16-18 hour workdays, every day, with the exception of those few breaks.

Another group of the changes has been at the datacenter level, and we’ve been physically working on those as well – the work is physically demanding (the servers weigh 35-40 pounds each, depending on the model), hot, and dirty – kind of like the gardening I do. It’s interesting how this one change from one vendor has resulted in other changes, like ripples from the boulder they dropped in the water.

While we are still getting through the changes, I expect we’ll be finished by the end of the first quarter 2020. I had decided to not do any gardening in 2020, to give myself and the beds a rest, but I realized that I’d at least need to do tabascos (peppers) as the hot sauce I made back in 2016(?) is almost gone, and the plants I put in back in spring of 2019 were gnawed on by deer and didn’t produce much of anything worthwhile.  That led to the realization that we also need cayenne and paprika powders for culinary use, so I need to grow some of those as well, since we’re almost out.

I may toss a couple of cukes in, just for the fam/friends and their salads. And if I’m doing that, I might as well do a few tomatoes (not not over a hundred of them, as I usually do), as well as a couple of other low maintenance items: lettuce, carrots, and so on.

At the end of the day, I do still need to get exercise, and gardening is good for that. I’m just paring it back a bit instead of going full bore out there. So that’s one intention for the new year.

Next up: the bees. I lost colonies in 2019, some because I wasn’t paying attention to them (laryngectomy and recovering) and others for unknown reasons (they had plenty of bees, food, and so forth). I have four in the beeyard. I know two at least will make it through our “winter” with some feeding, and I have four packages coming in the screen. I am changing how they’re set up, though, and will move the two on the wooden stands to sitting on cinder blocks, as the bees on the blocks have done so much better – all the losses we from hives on the wooden stand. My intention for the bees is to better manage them in 2020, since my major health issues are presumably behind me.

Next up: reading. I’ve read 64 books in 2019, and expect to finish another one today for a total of 65 of the 70 I had planned. I want to read more in 2020, and I’ll be setting a goal of 75 for the coming year – nothing crazy, like going from 70 to 100. When people set these types of goals, they can often set themselves up for failure by setting a new goal that is too far above whatever the previous level was. If you’re a couch potato and set a goal of running three marathons in the coming year, that’s probably not going to be realistic. My advice: set something reasonable, and make it concrete. Don’t say you’re going to “lose weight”. Say you’re going to lose 10 pounds in the next 60 days. That’s more reasonable. So, 75 books for 2020.

Next up: food. My intention is to cook for my mom and brother (and one sister who lives nearby, if she wants to come along) more often in 2020. “But Captain,” you say, “didn’t you just tell us to set concrete goals?” I did, thanks for noticing. This one largely depends on my brother’s schedule, though, so it has to be a little fluid. I’m aiming for at least one meal a week for them. That will get me back into the kitchen, where i love to work, and will also feed them, something I also love to do. Everyone wins.

Next up: mind/body. My intent is to continue doing my heavily modified yoga routine. There are things I cannot physically do and never will be able to do, but I can do a lot, and an increase in flexibility and strength is the goal. I’ve also been half-assededly meditating, and that needs to change into an every day thing as well, and that’s my goal: at least five minutes a day, at some point in the day (probably before I finally throw in the towel and go to bed).

Next up: writing. This is the big one. My intention is to write every day, at least two pages a day (to start). This will be difficult, just as it was in 2019, at least for Q1, minimum, since the work that currently pays the bills will still be taking up a huge amount of time. But I’m hopeful by Q2, with a reduced garden load during the season, and a lessened focus need on “work work”, I’ll be able to actually get time in. At this very low rate of writing, I should be able to finish a book at the standard length for my primary genre (mysteries/thrillers), in about four months – doable, and not terribly stressful since there’s enough stress in my life already.

I’m sure there will be other, transitory, things that pop up – life is like that – but These are the things I’m consciously focusing on for the coming year.

That’s all for now. I hope your holidays were grand and the coming year brings you all you want. Until next time, peeps: be well.

What can I say?

Except that there are people on this planet who, had evolution worked differently, would be eaten by feral bears. And some of them deserve it.

Let me give anyone who stumbles across this site some advice from your friendly tech support people. You are not helping yourself if you become hysterical. You are not helping yourself when you do not answer the questions we’re asking, or make answering those questions a long, drawn out affair, requiring us to ask you the same questions in a slightly different manner so you will shit out another clue for us. You are not helping yourself by claiming you’re losing a billion dollars per nanosecond because the application on your site hasn’t been updated in literally a dozen years and it’s broken – keep in mind that we can see the amount of traffic your site receives, and you’re lying to us, to make it appear your site is insanely popular when it isn’t. If it were, you’d be spending a lot more on it. As it stands, you probably spend more on coffee over the span of two days than you do for your site per month, so let’s try to keep things in perspective here.

You are not helping yourself by pretending you know more than we do about the servers or connections or pretty much any other thing involved in this. Remember: you contacted us for help. If you know so much, why didn’t you fix it yourself, and leave us be to clear the firewall because someone else can’t connect the logic dots of going from “let me pound away, trying to log in over and over when it’s failing” to “I can’t access anything” and who then proceed to inquire as to whether the servers are down or not. Because the likelihood of them understanding things is probably right around the likelihood of you fixing your own stuff, instead of us ignoring everything beyond “I have this error” and fixing whatever it is that’s broken.

There’s a reason people burn out on tech support. That up there is part of it. Don’t do that.

Until next time, peeps: be well.

Communing with nature’s denizens

After a weeding session (and filming some discussion about types of weeds and why I don’t do chop and drops here), I went back into the house only to find a hitchhiker on my shirt.

This is not the first time I’ve carried something back in, but it is the first time said something has decided it wanted to be really up close and personal, if only briefly.

Check your person before coming inside!

Until next time, peeps: be well.

Summer slam

Hello, my faithful readers.

So what’s been going on? Recovering from the laryngectomy, Regrouping from yet another lost season in the garden. Finally getting back on the tractor for mowing. Doing other chores like taking care of the bees and cleaning out the mobile chicken coop. The latter is made not quite so onerous by the fact that my sense of smell is gone unless I work at it, so moving around chicken crap and soiled nesting material in the heat is not a “pass out from the odor” moment.

Speaking of mowing, there has been a lone cattle egret hanging around the property on the days I mow. It’s a sound strategy, considering all the grasshoppers and crickets and frogs that get disturbed. It’s practically a drive-through for the winged creatures that are on the property – the chickens, but also this guy/gal:

Swallowed it whole, as they do.

S/he spent awhile wandering around in the beeyard as I moved on to finishe mowing elsewhere. It was a nice visit.

In work-related news, one of our biggest vendors decided to upend their entire licensing scheme, so I’ve been spending a ton of time dealing with that (which irritates me, because I could be spending that time on other, more enjoyabe things, but such is life).

I plan to start updating again regularly, just to get me in the habit of doing it. Hopefully, I can translate that over to my (fiction) writing.

Until next time, peeps: be well.

Ten years later….

Today (Thursday as I type this), after ten years, I finally set foot in a theater again.

“Have you not seen a movie in ten years?” one might ask.

I have seen tons of movies – just not on the big screen. The last movie I watched in the theater was Julie & Julia, back in 2009, not terribly long before the second cancer diagnosis in 2010.

Since that time, I have not been in the theater because I didn’t want to be That Person, coughing and hacking and ruining other peoples’ experiences.

So what, you ask, did I see today to break myself back into an actual movie at an actual theater? This one, from John and Molly Chester:

If you have the chance to see this on the big screen, you should. The cinematography is exceptional and the time lapse parts are stunning.

If you have the chance to see this on the big screen, or even if you wait for it on a smaller screen, be sure to have some tissues with you if you’re a crier. There are just enough sad/reality parts to generate some tears if you’re that sort of person, but these parts save the film from being the sort of wide-eyed, hippie “we’ll create a farm and live in harmony with everything!” nonsense that causes people to go into any agricultural pursuit as if nothing bad ever happens. It does.

That said, the film does serve as a kind of call to action, for people brave enough (or foolhardy enough) to get their green thumbs growing, even if not on the scale the Chesters did, and without the investor that made their move possible. The story relies on the hope and (non-religious) sort of faith that it can be done, with some patience and with an acknowledgement that we can’t always control every little thing. We can help, though, and in the end, although nature is what it is – sometimes overwhelming, often confounding, and a tad like a rebellious teen – our dropping of a stone in a small, still lake has just the sort of ripple effect that’s needed for both nature and ourselves.

Five out of five stars.

Until next time peeps: be well.

Goodbye, Mr.Big

We had to say goodbye to Sir, AKA Mr.Big, the rooster.

He didn’t start big, of course.

Mr Big as a youngster

But he grew up into a fine looking rooster.

Watching over the flock

That’s him at the rear, watching over the girls.

Big shot

And that’s him thinking he’s the master of the world because he figured out how to get on top of the IBC tote we have on the outside of the pool fence at the corner of the house for rain catchment off the roof.

Unfortunately, Mr Big got too aggressive with anyone other than me, and sometimes even with me, so he had to go. I had been planning to cull him for the stewpot for the dogs, but as it become clear it would be a bit before I could physically take care of that, we decided to just give him away to anyone who would come get him.

One of my sisters put him on craigslist, and it didn’t take long for someone to claim him.

Off to his next adventure

As it happens, the very nice guy who came to pick him up raises his own chicks, and Mr Big is quite…active with the ladies. We do not raise our own chicks here, so basically the only thing he was doing at the ranch – beyond having the amazingly fleeting sexy funtimes with the girls (seriously, chicken sex is done in under 60 seconds) with zero babies produced, and being equally amazingly annoying to the girls and to us  – was taking up space, eating, and pooping. That’s kind of a no-no on production sites. What’s interesting is that the guy does not raise chickens to eat – they don’t do meat chickens except when they’re culling. But they do raise quail and rabbits (for eating and selling) and baby chicks (for selling). Interesting what you learn about folks.

So Mr. Big is off to have fun with some new gals and has (for now) escaped the stewpot. Things are a lot calmer in the chicken pasture here now that he is not out there trying to run interference.

Until next time, peeps (heh): be well.

 

One month out

WARNING: IF YOU’RE SQUEAMISH AT ALL ABOUT MEDICAL STUFF, YOU’LL PROBABLY WANT TO PASS BY THIS ONE.  THERE ARE MANY IMAGES OF THE POST-SURGICAL PROCEDURE KIND IN THIS POST.

It’s been a month since the Big Op (plus five days, but who’s counting?). For those of you perhaps just stumbling across this because you went of googling for oral (or tongue) cancer or lung cancer or dysphagia or laryngectomy: the Big Op was the total laryngectomy. Not that the others were a piece of cake or pie or whatever it is you like to eat. I like to think of it as the bastard child of the two cancers, the surgeries, the radiation, and the chemo. Like a giant hippie commune lovefest gone horribly awry.

In any case, the reason for the laryngectomy, officially, was due to a dysfunctional larynx and unmanageable aspiration. That it, the original radiation effects, plus the ongoing effects – because radiation is the gift that keeps on giving – resulted in my larynx neither opening nor closing properly, which affected speaking but (more significantly) was causing me to aspirate crap into my lungs, which in turn created opportunities for pneumonia to get going. Which it took. Between December 2015 and January 2018 I had pneumonia 13 times, five of which landed me in the hospital for at least a day, and one of those landed me in the hospital for eleven days – and I came out of that one at 92 pounds and with a feeding tube.

I’d had a feeding tube before, way back in the beginning. That one I had for nine months-ish. I’m heading into year three with this one.

Part of the impetus for having the total laryngectomy was that even though I was not eating by mouth any longer, I was (and am) still producing quite a lot of mucus in my facehole. Because it’s thicker than saliva, it is both more annoying and harder to swallow, thanks to the dysphagia. The problem is that when you combine this with a dysfunctional larynx, there’s a pretty good chance of eventually suffocating in your sleep and/or inhaling a plug of mucus and suffocating before help can arrive. Enter the total laryngectomy, which separates the trachea and esophagus, giving you one tube for breathing and another for whatever is going on in your mouth.

Cancer Research UK [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)]
I put my new ENT off for almost a year on this. Finally, I gave in to what really was inevitable: the problems I was having would only get worse over time, and would likely end up killing me.

On April 26th, I went in for surgery. It took about six hours for the actual surgery: the creation of the permanent stoma, the removal of the larynx and associated structures, the harvesting of a flap of skin from my left thigh to recreate the (now missing) parts. I was in the ICU directly after surgery and for about half a day before they moved me out to the oncology floor (Baptist – Weaver 7 shoutout!). Post surgery, with the stoma, the drains, and the arterial and venous monitor wires on the rebuilt flap (the bulging right above the stoma is the rebuild – swollen and bruised) to make sure the blood supply was ok. Staples along the neck, and stitches in the stoma.

Then, as right now, I have a larytube in the stoma. It’s a fairly short tube, held in place with an oh-so-fashionable collar.

This is how the tube looked the first time they pulled it out to clean it: nasty crap from the stuff that made it down into my trachea while they were working. When I cough, the stuff gets caught in and on the tube. It looks much better these days, with the worst of it when I get up in the morning (and it isn’t bloody and nasty like this, but more clear). I clean several times throughout the day.

That will stay in until things have healed enough that I can move to a base plate – a sticky “plate” with a hole in it that goes over the stoma. With both the larytube and the base plate, there is a button filter called an HME that sits in it. HME stands for heat/moisture exchanger, and is meant to recreate the functions your nose used to perform: filtering and warming/cooling the air you’re taking into your lungs.

HME front

 

HME rear
HME rear

There are some complications that can pop up post-surgery, and I’ve had one, although it has not been the usual type: mine is coughing. Yes, you’re supposed to cough to bring up any crap that’s in the lungs, and I had a fair amount of that early on, which required that I clean the tube anywhere from three to six times a day. Sometimes so much/so forceful it would come through the tube and jam up the HME.

HME clogged

 

But mostly, I have a dry cough. Normally, this would be a shoulder shrug, but what started to happen was a separation of the rebuilt flap from the skin of my neck at the top of the stoma. The pressure from the coughing hammered up against that area and air would just rush right up, further separating the two. This is at the worst. Still fairly swollen, but at least I had my stitches and staples out by this point.

 

Flap separation

 

Not a good thing, all that air – and sometimes painful. The more that opened, the more the top of the larytube wanted to ride up into the trough there – which in turn made the bottom of the tube rub against the front of my trachea where it extended down. Coughing causes it all to move, creating even more annoyances.

Right now, I have a piece of hydrafera (an antibacterial spongy thing) taped across the top of the stoma so the top of the larytube rests against that instead of riding up into the trough. I’m trying to control my coughing – not to allow it to really devolve into a full on fit. Not easy, but it beats having further complications in my neck, which I don’t think can really handle it, given all the things it has had to endure over the past 14 years.

I go back on the 4th of June for another followup, and hopefully by then the top of the stoma will be healed enough that I can go back to the base plate instead of having a tube in my trachea. That would be progress.

Also in progress: I continue to sip water as I can. It is getting easier to do so, and this is slightly promising. The next challenge will be able to figure out how to crank my jaws open again. Now that I am not talking at all, I’m finding that my opening is slowly closing in on itself and my jaws are tighter than ever. It’s a shame there is no real research being done on trismus. I can’t imagine I’m the only one out here with this issue.

Onward we go. Because there is no alternative to not, is there?

How does it go? Down!

Sorry for the lack of updates, my handful of dear but loyal readers. Recovery from this has been…..weird.

But! On with some good news before I get my shit together an do some posts about the recovery. I had a swallow test on Tuesday (yesterday, as I write this). I was quite nervous about it, worried that going on three years of non-use was going to be problematic.

As it turns out, the largest obstacle – or, rather, the biggest missing piece of the entire process – is not having a full tongue (and not being able to move what I have, thanks to the muscle removal that was necessary during the original cancer surgery).

However, by tilting my head back a little and doing a swallow, I can get thin liquids down. Hooray!

It takes 3-4 tries to actually clear my mouth, because of the tongue, but it goes down eventually. Now I can use my Yeti cup again and also just have a regular drink after working outside (or just walking outside, it’s 100F here and will be for the next ten days, according to the forecast).

I did try a slightly thicker swallow during the test, but could not swallow that well at all until a little thin was introduced into it. My esophagus has thinned a little at spots, but that, like the swallowing function itself, should get a bit better with practice. And this practice will be a lot more fun than most of the other things I’ve had to do over these past 14 years.

Until next time, peeps: be well. I’ll try to make the next time a bit of a shorter interval.

Another (bleeping) day

Don’t get the wrong idea: I do like waking up each day, because it sure beats the alternative.

But mornings, for me, are a little hellish, thanks to the ravages of cancer and treatments and surgeries. Right now when I wake up, my neck and shoulders feel really heavy. I also have to site for a moment and do some coughing, to try to bring up whatever has settled/bubbled up in my lungs for however long I’ve slept. After that, my routine goes as follows:

Give the dogs their greenies, then let the big guy out. The puppy (he is not a puppy any more)  stays by my side as I make my way to the bathroom. After taking care of my own business, it’s time to remove the HME (the heat-moisture exchange filter, which  takes the place of your nose, as far as your trachea is concerned, for those functions), and then remove the larytube for cleaning. The HME filter is replaced every 24 hours unless it needs to be replaced before then because it’s jammed up with mucus. After cleaning the larytube, it goes back in, I pop the new HME on, and we’re off to the kitchen.

After a quick brew of coffee and some med smashing (thyroid, gabapentin this round), its off to my desk to settle in and see what’s going on. I pour in the meds and coffee, work a bit – maybe an hour – then head back to the kitchen to make breakfast.

I’ve been trying to incorporate blenderized real meals into my diet, but the volume is problematic. I have to add so much water to whatever it is to puree it, then strain it, that I can’t “eat” as much, or there’s too much particulate to get a fairly high percentage of the actual calories down. For now, the majority of what I eat is coming from powders. I went into the hospital at 127 (pounds) and this morning weighed in at 122 (pounds). So, in addition to the complete meal replacement powder I use, I add some weight gain powder I used to use exclusively when I was working my way back from 92 (pounds). This gives me a ton of carbs and calories, without a lot of volume over what I’m already using. Breakfast also involves more med crushing, mixing, and pushing down the tube: the other half of the gabapentin, and dicyclomine. I also dump in half of a sucralfate, even though technically that should be taken a) alone (it crushes fine, but mixes/dissolves terribly unless something else is also in there), and b) an hour and a half to two hours before a meal (which is nigh on impossible, given how many times I have to eat a day). I’m trying to stay away from the pain and spasm meds and the anti-nausea/emetic drugs. I have children’s ibuprofen and acetaminophen to dump down the tube. Thankfully, no crushing because it’s a liquid. Eat up! Also let the puppy out, because now he’s ready. He can’t just go out with the big guy and do his business in the early morning.

Plow through that, which takes about an hour, then unplug the tube and get everything washed. Do my laps through the kitchen, the dining room, the living room, and do my neck and shoulder exercises while I’m doing those. Strangely enough, it’s my leg that hurts more than my neck. Then again, the last big muscle surgery I had, for the lung cancer back in 2010, when they sliced open my back, hurt like a bitch, too, and took a long time to heal. But on we go.

By now it’s been several hours. Time to clean the larytube. Again.

Next up: water and coffee while working.  Every so often, I get up and do a few laps and shoulder/neck exercises, just to keep the blood flowing and so as not to have any lymphedema develop in my leg,  (or worse, in my neck). When the coffee and water are gone, unplug, wash everything. Again.

If it has not rained, now would be the time I brave the great outdoors to start the first watering zone. Yesterday, we had a massive thunderstorm roll over us, and it dropped just under an inch of rain, so today, we’re good. No watering.

Back to the desk, and work.

Repeat, repeat, repeat, repeat. I usually eat about six times a day. I’m also cleaning the larytube every three hours (or less, if I feel it’s all gunked up).

As you can imagine, this constant hooking up/unhooking/cleaning stuff just dominates my entire day. I’m sure a day will come that I’m not constantly scrubbing the larytube of gunk. At least I hope so.

My folllowups with the plastic surgeon and the ENT are both on the 14th, back to back. I should get my staples out then, and the next step will be a swallow test. I cannot wait to see if I can actually eat. Because if I went through all this and I still cannot eat, I will be incredibly pissed off.

No gunky, nasty pics this time, boys and girls. But for anyone stumbling across this because they are a laryngectomee or will be facing a total laryngectomy and permanent stoma: I’ll post some up later. Just so you know you are not alone, it can look really crappy and dried up and gross, and (I am not a doctor, remember) it will get better. At least to the point where you can go back to your life unless you’re a competitive swimmer or diver or something. That’s probably history. But for normal people, something akin to a normal life will probably work out.

Until next time, peeps: be well.