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.

 

Back to (real) life

I’ve been home for a few days now, and I have to say: I never realized just how tiring my life is.

This is not to say that I’ve done everything around the ranch. I am still on light duty, but I have toured the chicken yard (and Mr Big, AKA Sir, is destined for removal, alas), taken out compost, walked a few laps around the giant front gardens (and today I’m doing the watering of the ones, because the promised rains did not come), and I have even cooked a bit.

As tired as all that makes me, though, there is nothing in the world more tiring than coughing. It is exhausting and it pisses me off. i think it’s also causing the ear and throat pain I’m having on the right side of my head.

(It is now the next day, May 5.)

This morning I made hashbrowns to go with the real people food breakfast. They received excellent reviews from the eaters: no additional seasoning needed, which, for one person in the eater category, is a minor miracle.  I think they could have been a little crispier, but I was running out of gas.

The real eater version (just a quick Southern breakfast – I am pretty sure they had bacon, too):

My version: eggs, hashbrowns, some weight gain powder, and a teaspoon of seedless raspberry preserves. Added some water and pureed it.

Everything was cleaned up shortly afterward, and I went to work. Then, I had a shower. Let me tell you how hard it is to shower when you cannot get your neck wet: very. But I did manage to wash my face and hair without drowning myself, so that’s a bonus.

As I was getting dressed, a gigantic thunderstorm cell rolled over the ranch, giving up about 3/4 inch of rain. Nice!

The rest of the day? Working. Work work work. Right now I’m having some butternut squash soup I made some months ago, and a faux margarita. No margarita mix on hand, so I used lemon and lime juice and a pinch of salt to go with the tequila and triple sec then added water until the total volume was two cups – gotta stay hydrated so my stoma crap doesn’t dry out.

Next up: I’ll show you some pics from my bathroom, which has been taken over by medical equipment. FFS.

Until next time, peeps: be well.

There and Back Again

Our (well, my) journey was successful. I am now in possession of a larytube in my throat, filters to pt over it, an electrolarynx device, a portable suction device, and all sorts of other medical supplies to go with the ones I already had on hand.

The first thing I did when I got home was to love on the dogs, of course. They miss me terribly when I am gone, and will sit by the gate, waiting for me to come back, or sit under the tree, watching our unbusy road for my car to get to the driveway and turn in. My puppies.

I took an abbreviated stroll around the front garden. Killed a caterpillar on my broccoli while I was in there and pinched a few suckers on a few tomatoes, but that was all the energy I had for that.

Now I am back at my desk, ready to get back to work, with coffee and my own meal that does not have corn syrup, corn syrup solids, and whey protein in it. That stuff kills my gut, but the hospital didn’t have any other options. I understand, because you want to get the best bang for your buck for patient recovery, but my goodness there must be another option.

I’ll post up some pics in the coming days of the aftermath. Right now, I want to get my caffeine back to more appropriate levels, and get my food in me. Then pass out. It’s SO HARD to sleep in the hospital!

Thank you all for your kind thoughts and well wishes. Until next time, peeps: be well.

T-1 Day

Tomorrow is the Big Op!

My sister came down yesterday from NC, to help out with stuff at the ranch while I’m gone (and to ferry kids around, etc., while my other sister is at the hospital with me).

My instructions for tonight, per the pre-op package: shower, put on clean jammies, wait two hours, then wipe myself down with the chlorhexadine wipes. Go to bed on clean sheets. In the morning, by 0545, I have to pour the 50g carb-loading drink down the tube. There’s also another wipedown with the chlorhexadine wipes. Then into clean clothes and at the checkin by 0745, with the OR time at 0945. It’s like flying anywhere, except with a ton more rules about how clean you have to be.

I understand the need for it these days, but it still amuses me.

I have been recording myself saying various things, so I’ll have that in my own voice versus whatever comes out of my face after the Big Op.

People keep asking me if I’m ready for this. I don’t think anyone is really ready for this. But I am prepared.

Things have been getting done left and right here as we moved toward crunch time. Early this morning, I put the second coat of primer/sealant on the medium hive bodies I built yesterday, and got the first coat of exterior paint on them.  I cleaned out the chicken coop, moved it and the poultry fence to another area, got the girls (and Sir) into the new area, mowed down the pieces they didn’t clear all the way where they were, then went over the area they were in with the cultivator, and spread some cover crop seed. Then one of my sisters, her son, and I set up the grow bags for the sweet potato slips. I’m pouring dinner down the tube, and when I finish this, I will pop into my bee suit and go tot he beeyard to refill whoever needs feed. Later, I’ll put the second coat of exterior paint on the hive bodies and build some more frames so I’ll have enough frames to fill those (40 frames total; I built 20 yesterday).

So, yet another productive day at the ranch. Tomorrow, I’ll get to rest, albeit under general anesthesia. I have my laptop packed, so as soon as possible, I’ll be leeching off the hospital internet connection so I can work and play.

It’s going to be quite the ride, peeps, so buckle up. And be well.

Who needs sedation?

Me, definitely, for the Big Op next Thursday, which I am classifying in the same category as the original surgery on my mouth and neck. I was waffling a bit between slightly ahead of that one versus slightly below it, but I do have to take into consideration the fact that I will have a functional esophagus at the end of this, versus going from surgery to chemo and radiation as I did back in 2005, and not being able to eat normally. I think that evens them out, really.

Tuesday I did the pre-admission stuff and collected my bag of papers, chlorhexadine wipe cloths, and this:

 

Apparently, we have evolved to trying to get people nutritionally ready for surgeries these days. I’m not saying that’s a bad thing, because it makes sense, doesn’t it? We all know the routine: no eating or drinking regular meals after midnight, only enough liquid in the morning to take your meds, etc. Then, after surgery, you are in pain AND hungry.  But now, there’s a pre-op drink to take. Who knew carb loading before surgery was a thing? If it helps me escape the hospital earlier, though,  I’m down for it.

On Thursday I met with my gut guy and told him I think the balloon for my PEG has deflated, as it’s acting the same way it did before this one, with fluids escaping when I remove the feed tube that connects to the button, and it’s quite loose. The issue, of course, is that I don’t think the doctors who have blocked out seven hours of OR time for next week would be terribly thrilled with a procedure to replace it, even if we managed to squeeze it in next week before the Big Op.

Solution: replace it, sans sedation. And that’s exactly what we’re going to do next Tuesday.  He’ll pull this one out, insert a new, inflate the balloon, and send me on my way. Excellent! I hope not to continue to need the tube as we move forward, and if I can keep my nutrition up, there’s no need to keep the tube.

I also met with the speech therapist and the dietitian after that, hustling from the Southside to San Marco – only to get stuck by two trains two blocks from the cancer center. Thursday was not a good day to be on the road, since Friday was a holiday heading into easter weekend.

But I did make it, and the SLP (that’s speech therapy) showed me the trach tube and the button that snaps into it. She told me that life as a laryngectomee means a lot of supplies. I told her I’m used to that, with the feeding tube situation. I’ll be awash in trach/stoma supplies. Between this and the feeding tube supplies, I guess I’ll be amply prepared for the zombie apocalypse in that arena.

The dietitian recommended another thing to drink in the five days leading to the surgery. It is again by Ensure, and is called an “immunonutrition shake”.
It says 18g protein there on the front, but on the nutrition label, it says it has a whopping 45g carbs. Three of these for five days before surgery, which mean I’ll start working through these today. A carton has 330 calories, too, so I’ll probably be cutting back on my meal replacement shakes with these in the mix of things.

I still have things to do to prepare my world outside the hospital so I can deal with life inside the hospital for however long I’m kept captive. I know it’s unrealistic to think all the things I’d like to get done will be done. I’m trying not to stress over it, as I think building up stress is not ideal, and probably will detract from being as strong/fit as possible going into surgery.

That’s it for now. Last night (technically, the wee hours of this morning) I fell asleep at my desk. This morning (currently: 2:20 AM), I’d rather get that nap in my bed, so I am out. Until next time, peeps: be well.

 

Transitioning back to food

AKA: weaning from tube feeding

While my upcoming, next rather life-changing surgery of a total laryngectomy does have its downside, one of the upsides (beyond not drowning in my own bodily fluids or getting another round of pneumonia) will, hopefully, be the ability to eat by mouth again. This depends on learning to swallow again, courtesy of my reconstructed neck.

Honestly assessing myself here, I feel it is much more likely that I will be able to eat than it is I will be able to speak in any intelligible manner – that is, it will be even worse than my speech is now, because I simply do not have the infrastructure in my mouth for it. I’ve made peace with this even though it’s a bummer. There are all kinds of ways to communicate now, and written has always been my favorite way anyhow.

But now I am neck deep (so to speak) in researching moving off tube feeding and back to normal eating. As I suspected, it’s going to be transitional – after all, my body is not used to real food after years on a tube. The biggest problem that I foresee is water: as I don’t have a lot of spit, eating anything is going to require what will probably be a fairly high volume of water intake with it. There’s a reason doctors tell people on diets to drink a glass of water in the arena of half an hour before they eat. Water fills you. For a normal person, this is fine. For me, it may lead to fewer calorie intake, which in turn can cause me to lose weight I really need to stay on me. We’ll see how that works out.

I don’t know if I can express enough how excited I am by the prospect of eating for real after my throat heals enough for me to relearn swallowing. I used to be a foodie, and I wouldn’t really mind being one again – pretty much anything can be diced up or minced into a piece I could swallow whole with some water, as I won’t have any teeth to chew with. Hell, babies do it all the time, and I’m sure I could as well, at least when or until I’m able to prey my jaws open and get some dentures back in there (preferably with some kind of adhesive that will keep the bottom plate in, even though there’s no good ridgeline on that side thanks to the original, life-changing surgery 14 years ago).

I’m  a little nervous about the whole stoma thing. Will I really be able to go back to all the physically-demanding stuff I do now? This is the biggest question in my head at the moment, and I’ve been hunting around the web for people relating their experiences from the physical side of the equation, post-surgery. The hard part is this: beyond all this cancer and cancer-related bullshit (fuck you, cancer), I’m perfectly healthy, and quite active. It’s a worry for me that I think I can quash just by getting it understood in my head that this is just One More Thing. I overcame the rest, and I can get through this, too.

We are at T-9 days  now. I’m still cramming in all the stuff I need to get done before I take my little vacation (of a day, maybe two, since I’ll have my laptop there, and will probably be able to work once they kick me to a regular room from the ICU, or maybe even in he ICU, who knows). Today when I got up, I was just tired to the bone, and today wound up mostly being a rest type day. I pulled some weeds out of one of the frames in front garden north, and prepped it for being run over with the cultivator. I have two flats remaining in the barn that absolutely need to be kicked out to the rows. It was my plan this morning to get those done, but I did not, because I simply did not have the energy to do it. Today, though (as it’s 0120 on the 16th as I type this), after the preop stuff at the hospital, I’ll be looking to get those done in the afternoon and wipe it off the list.

I also need to do another split from hive #10 in the beeyard, as I found multiple queen cells when I inspected it on Saturday. One of the new packages (#8 hive) swarmed away on Saturday when they released their queen. I saw them up in a tree, about 15 feet off the ground, and while I probably could have gathered them back in without putting myself in danger, I had neither the energy or patience that day to capture them, and even if I had, I had the feeling they would go again anyway, so I let them go. The bees I’ve received from a couple of places have really pissed me off. First the Buckfast hives, and now one of the new packages, which I think was a Carniolan. I’m hoping the others stay put. It isn’t like there’s anything bad in the yard. I have Italians that are chugging right along, after all. They had boxes and wax-coated frames, and feed, but they really did not want to be in their boxes. I have (finally) a good queen whose genetics I like from a survivor bee from 2018, and I’ve already taken two splits so far off that hive (#10), and those daughter hives are banging. We may just be a place where the Italians are best suited.

Time to get some sleep. One of the things the hospital says in the packet they give you is to make sure you get some good rest. That isn’t always a given for me, so we’ll see how tonight goes. Until next time,peeps: be well.

Buckfast bees, part two

In our last discussion about Buckfast bees, I noted how calm they were for their installs. The bees had released the queens in three of the packages, and I released one (because I had neglected to remove the cork at the candy end). Last night – Saturday night as I write up this entry – they were are fine. They’d started to draw comb and fill it with syrup.

One of the reasons I wanted to test out Buckfasts is because they are said to be disinclined to swarm. In practice, however, of the four packages, three swarmed right out today at some point before 1 PM. And they didn’t just swarm: they swarmed out, found acceptable living quarters somewhere, and then all buzzed off there.

I opened up the first box (hive #3 in the beeyard) and it was just empty. I checked the hive two spots down (#5) and there were TONS of bees in there – far more bees than in a package. Major problem!

The bigger problem was that I could not find the queen in #5, as there were just way too many bees. And despite the fact that Buckfasts are supposed to be calmer, they were flying around everywhere, dipping in from time to time to hit my head.

I went around to the front of the hive, and there, on the ground, right in front of #5, is a marked queen. Well, lucky day! I picked her up and put her on top pf the frames of #5, figuring this must be their queen. She walked along, and some bees started coming to her, and I figured that was that.

Nope.

I happened to see some bees fanning by the edge of the hive stand, near some bricks I had placed there. I stuck my head down there and found the OTHER marked Buckfast queen, along with some of her crew. I managed to capture her in a queen carrier – which the bees cannot open – I had in my pocket.

I then looked up at the top of #5 and saw an absolute mountain of bees on the two middle frames. I pulled one out, and found the bees balling up the queen I’d put there. Oops, wrong hive for that queen – clearly she was the queen from #3 hive. I managed to get her freed from all but a couple of the worker bees, and put #5 queen (in her cage) back in.

Now, of course, I had a problem: a queen bee I was trying to protect from two persistent workers trying to kill her, and no queen cage. I grabbed up the empty queen cage she’d shipped in, managed to get her into it, and plugged the hole with my thumb.

With her secured, I moved about half the bees back to #3 from #5, went in the house to get another queen carrier, moved #3 into it, then took her back outside, put her between the frames again, and closed them both. My theory is that #3 tried to take over #5, and #5 just walked out on her hive, then #3 was probably kicked out. Thus, two queens on the ground, and not a whole lot of bees seemed to want to follow out of #5, for whatever reason.

I was pouring sweat by now because it was a toasty 90F with little to no breeze, but decided I’d better check the other two Buckfast hives to see if they were pulling any shenanigans.

Empty. Both of them. Not a bee to be found anywhere in, under, around the boxes, not on the ground or in any trees. They were just….gone.

(I started this on the 7th. It is the 8th when I’m finishing it.)

So, my experience with Buckfast bees is very, very different than what all the sites say is their general characteristics. I also learned via a little deeper searching that the second and third generations of buckfasts (that is, the daughter and granddaughter of the current queen) can be downright mean and aggressive. I’m not up for that. If these two hives stay – and today when I checked them after being at the NOC  all morning (sans breakfast and coffee, I might add) and they were just as chill as when I tried to get them in the hives when they arrived on the 2nd. We’ve had a big storm pass over us here this afternoon, and I’m kind of dreading going out to the yard tomorrow to see if they’re still there.

Bottom line: no more Buckfast bees at the ranch.

Rest day


It’s been a very busy week at the ranch: an employee on vacation, new bees arriving, someone hosing their server, planting out, along with all the other everyday, normal things that make life tick around here.

The server issue took about 40 hours to recover, plus another 10-ish to iron out little things – it was that bad, from an admin standpoint – so I’ve been running on less sleep than normal. That’s ok. In a couple of weeks I’l be taking a 6-8 nap during the daytime.

I’ve got the broccoli, some of the onions, and a flat of tomatoes out of the barn and into the rows. I intercropped onions and broccoli, and put some carrots (from seed) with the tomatoes. That leaves five flats in the barn and half a flat of onions and leeks hanging out in front garden south, awaiting their places. Plus the seeds I’ll sow directly (cukes) and the flats to start the melons so they can be set out (although I may very well just say screw it, and sow them directly, too).

The Buckfast bees – a variety new to me, as I’ve only had Italians to this point – seem to be super chill bees. They were not particularly bothered by much of anything I was doing, even when I had to shake the packages. Even at that point, some of them didn’t rocket out of the packages to come at me (bro!) and just stayed in the package, hanging out. I’m working on editing video of one of the installs to show that.

This morning, though, the week finally caught me. I was just too exhausted to do anything outside. It didn’t help that it was almost 90F today, and that being short on rest makes me queasy, which itself just piles on top of the queasiness I’m having when pouring food down the tube, which I think is a sign that the balloon has deflated, as it did last time. AND: we had our first heat index day.

This is the earliest date here at the ranch for a heat index day.

Now, though, it’s about an hour-ish until sundown, and it’s cooler (82F and with a light breeze as I type this) and I can hear some distant thunder – a forecast of rain that, as usual, passed us by. I feel much better after just doing some “real” work as needed, and resting inside. I’m thinking about popping out and putting the cuke seed and the zuke/squash seed in. That would be a couple fewer things that need to be done tomorrow.

It puts the lotion on its skin

AKA: four days until the appointment with the plastic surgeon. Since he’ll probably be taking skin from my thighs (as I am not a large person and my forearms are not sufficient), I’ve not been wearing shorts when I’m working outside, even though we’ve already hit 90F once this year. We are averaging about 82F, which is pleasant enough, but still, this is the time of year that calls for shorts!

I got my instructions for my pre-op stuff: on the 16th, I will go in and give them blood yet again, have a chest xray, and EKG, a chat with the anesthesiologist, etc., etc.

And then: the waiting. Or, rather, the busting of my ass to Get Shit Done before N-Day – losing my voice – which is twenty days from now.

It’s going to be an interesting spring.

Until next time, peeps: be well.

Losing my voice in 26 days

I’ve started to record myself saying certain things – mainly to my dogs, today, as we were in and out working with some crazy bees and with transplants from the barn to the gardens.

The bee craziness is just plain weird. Both packages installed without issue, but the next day were both showing far more activity than they should have. It looked like some epic battling was going on in both. I know it couldn’t have been robbing, as they had nothing to rob.

I pulled the front feeder off both, put in an entrance reducer  on both, then put the feeder jars on top of the frames in the medium box. To cover the feeder, I put an empty deep box over them and closed them. A couple hours later, there was far less activity at the landing boards. Success!

Except: the next day, the first package (from this point on, noted as #1) and the second package (#2) were still being weird: both of them had bees lined up on the underside of the bottom boards. Because I use screened bottom boards, when they fan to distribute the queen’s pheromones, some of them were actually under the  hive.

What to do? Nothing to do except the (carefully) take apart the hive and clear the bottom of the boards of dead bees and shake the bees into their home (again).

Next day: go out, find #1 bees are clustering themselves from the inner cover, like a bunch of idiots who can’t tell they have food and a place to draw comb and go about their business. Add some deep frames to the deep body that is covering the food bottle.

Next day: mowing the property, and I take a swing by the beeyard, only to find the front of #2 hive covered in bees. Great: #1 has swarmed and landed on #2.

This was not the case, though: turns out, every bee in #2 was hanging on the outside of the box.  Put them all back in, close it up, call it a night.

Today: go back out to make sure they are continuing what they started. Alas, no. The #2 hive is completely empty. I look around the beeyard, and see a dark spot in a tree about 50′ away. There they were, hanging out. I positioned a box with some frames in it where I thought they would land, then pulled the branch toward me and gave it a single hard tug. I’m happy to say I got almost all of them in the first go, including the queen: the workers immediately started fanning like crazy, and some bees that landed outside the box started marching in.

That’s three times to hive this package. It’s supposed to be rainy the next couple of days, so that may keep them home, realizing this is a pretty damn fine place to be: a roof over their head, frames to build on, and food to eat.

Didn’t get any transplants in today, as it started raining while I was getting the girls back into a hive. I’ll have a video of that swarm retrieval up as soon as I can get some time to edit.

I hope those girls are still there tomorrow. It’s a shame to waste that much energy on something if it’s just going to leave or break.

As I type this, it is March 31, 2019. That means it is 26 days until I lose my voice.

Until next time, peeps: be well.

Reflections on gardening, cooking, and life