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.
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.
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.
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.
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.
Last time, I talked about surprises. And I’m going to talk about it again here.
Based on my last visit to my ENT, my surgery would be sometime in May, because of the 6-8 week period that they had patients already slated. People with, I might add, actual cancer in their necks, unlike me and my personal juice-filled neck that wants to kill me in a different way.
Yesterday, the scheduler called, and the surgery has been set for April 25 – about a month before I figured everyone would be on the same page and in the same OR to slice open my neck (I’ve dubbed it N-day).
What this means for me is a giant acceleration of all the things I need to get done before going under the knife, since I’ll be recovering for at least a couple of weeks afterward and won’t be able to/feel like doing anything.
Yesterday, I got all the new blackberry roots into place, in the row on the east side near the driveway, and also in the eastern side of front garden north. The latter meant quite the battle with the wisteria that thinks it should invade the entire garden.
Today: I have five blueberries to get in place, and then it will be time to go samurai on the flats in the barn: everybody gets planted out, whether they’re entirely ready for it or not.
On Wednesday, I received two packages of bees (Italians). Amazingly enough, our postal driver actually delivered them – that’s not generally what they do out here, and I’ve always had to scoot over to our very small PO and pick up the packages no one wants to touch.
They installed well – as well as any other install – but there seemed to be a lot more than three pounds of bees in the second package, the installation video for which is right here:
I have less than a month to get more than a month’s worth of stuff done. Stay tuned.
Sometimes the steps are big, sometimes the steps are small, but they all lead to the same place: the OR.
Another blood draw today, for a comprehensive report, after one last week ordered by my GP, for thyroid levels (result: low, and they sent in an order for a higher dosage, recheck in two months).
The thing about those two months is that we’re looking at surgery in May – two months from now. They have other people with actual (fuck)cancer on the list before me, to which I said: that works out just fine, since I have bees coming next month, and those people need it way more than me right now.
My mom and one sister were in the office today, throwing questions at him. It was a good visit, and everyone is now happy – not happy that it needs to be done, but happy that we are in good hands and what we can expect during the surgery and the healing afterward.
I have a CT slated for Friday, and a visit with the plastic surgeon on April 9.
Bonus: it’s now the next day from when I started this post, and the nurse called us to tell us my calcium is low. So, when I go to pick up my new thyroid meds – because I had that checked last week, and it’s low – I have to look at calcium supps..
I spent quite a bit of time in the gardens today – more on that (with pics! – in the next one.
Had a bit of a chat with some of the fam about this upcoming next stage of my life, to make sure everyone knows what’s going on. It isn’t the greatest news, but we’ll all get through it.
I spent a little time today learning about “passive yawning”, which is a technique used to smell – if you’re no longer breathing through your nose, guess what? No smelling for you! Now, I can certainly see instances where this is handy: cleaning the chicken coop, or not being able to smell the fart bombs my dogs generate. But, my sense of smell is exceptional, and that will definitely be something I will miss. It looks like this technique will allow for some intentional olfactory response. Too bad there’s no real solution for subconscious continual response as there is for regular breathing. Bummer.
In other news, one of the chickens managed to get herself out of the fenced pasture. I got her back in, then started looking around for an egg, because I didn’t know how long she had been out. It wasn’t terribly difficult to find that it had been long enough for her to miss her date with the nesting boxes in the coop.
Prior to that eggscapade, I had worked the bees, as it was a gorgeous day: warm enough for the bees to be flying, but not so warm that you’d melt inside your bee suit. I wound up splitting #10 (to #15), and #6, in a double split, to #1 and #20. Very nice.
Then, as evening closed in, I grabbed the pizza dough I’d made and rolled into balls yesterday out of the fridge and started stretching them. After that, it was into the oven for them for a parbake. From there, they are heading for freezing until the fam and friend group has set a date to come over and have a pizza assembly party. For that party, we have a group of people handling various pieces of the construction: sauce, veggies, meats, cheese, etc. Once made, we will then vacuum pack those, et voila! Pizzas that can be pulled out of the freezer and go right into the oven to bake for an easy, fast dinner.
And then: work work work. I’d created a todo list of some major items to get out of the way so I could write without having my brain yammer at me. That list is now the list I need to get done (or as much done as possible in some cases) before whenever the surgery date is. Before I go under the scalpel again, I have to get bloodwork done, have a couple of CTs, meet with the plastic surgeon so he can decide where to harvest the flap of skin that will be used for the primary surgery site, and so on. It’s going to be another medical adventure for me!
That’s it for today, which has turned into tomorrow as I put this together. As always, until next time, peeps: be well.
This didn’t go up yesterday as planned because it’s taking me a bit longer to finish it than I originally thought it would.
So. I had an appointment with my ENT and since the appointment was early in the morning and it takes me about an hour and a half to get the bulk of the mucus out of my face to a point where I get some relief for a bit, I had to take off with tons of crap in my throat. A lot of people don’t get why this is an issue, but think of it this way; ever gargled? That’s how I sound when I first get up and throughout the day when the mucus starts building up again. It’s why I’m constantly clearing my throat. It’s the reason for my chronic cough and why I can’t do something as simple as go to a movie – after all, I don’t want to be that person coughing through a movie and annoying everyone.
Anyhow, last visit we had discussed, briefly, a laryngectomy. At the time, I said no, I didn’t want to do that at this time. I may hate how my voice sounds, and I may not have much of a voice, but I have one. The problem there, as with everything related to this cancer and its treatment (hey, fuck you, cancer) is that it will only continue to get worse, in the same way my teeth continued to devolve to the point where it was time to just have them all removed. And it has: it is noticeably worse to me now than it was a month ago, and much worse than it was six months ago.
As he was checking my mouth just visually by eye, he broke out a dental mirror and looked down the back of my mouth into my throat. “Oh yeah, drowning in mucus.”
Not what you want to hear, even if you know this to be true. He broke out the scope (a rhinolaryngoscope, if you’re inclined to boost your knowledge of medical tools), went in through my right nostril, and had a closer look. During this, if the doctor is trying to gauge vocal cord activity, they’ll have you say “eeeeeee”, breathe deeply, say “hah hah hah”, and possibly swallow, if you’re able. We went through all of this, and he took pictures.
I’ve know I’ve had partial paralysis in my left vocal cord for awhile now, thanks to my previous ENT. We’ve also known that I’ve been suffering from laryngospasms, where the cords won’t release from being contracted when I do something like lift a heavy weight – a bee hive body, for instance – or when doing something like moving the mobile chicken coop, or even bending over. Since most of you reading this will say, big deal, I’ll tell you what it feels like: suffocation. It’s unpleasant, and scary. But, since I knew what was happening, the instapanic I used to feel I replaced with just trying to stay calm, and try to breathe normally until they did release. This is not an easy thing to live with, especially if you have, as I do, many and varied things you do that will cause these spasms to occur.
We’ve also known that the combination of my vocal cord issues and the degradation of my epiglottis were why I repeatedly suffered from aspiration pneumonia for two entire years. That’s why I have a feeding tube and have had zero by mouth for a year now.
Now, back to today. The scope clearly showed mucus hanging around, trying to chat up the ladies, and generally being a punk.
The mucus is the globby lighter colored stuff in the center of the image. There was more of it, but I had managed – through coughing while bent over at the waist to let gravity help – to show the doctor how I usually got some of it out. Obviously, not a really viable method, and just as obviously, although I did manage to get quite a bit out, there was still quite a bit left. This, my doctor said (and I agreed) was not a sustainable method of dealing with this, and there was a very real possibility that it would devolve to the point where this could (and probably would) kill me, either by covering my airway to the point where I did in fact suffocate, or, if I got an infection of some sort, by having infected mucus make its way into my lungs and have a pneumonia party there.
We also found that my vocal cords are now not closing fully and not opening fully – the latter is one of the reasons I feel like I can’t breathe and periodically take giant gulps of air. This is no way to live.
I knew it would eventually come to this point, and we talked again about a complete laryngectomy. That would solve the mucus/breathing problem, and also (maybe) allow me to eat by mouth again, even if only the same liquid/puree/soft food diet I was on before. Even if I did get dentures again, I can’t open my mouth widely enough to get them in right now, and the lack of a ridge on the left lower side makes it difficult to keep them in place to eat. But that’s a different struggle, for a different time.
Since I’d been researching laryngectomies after that last visit, I knew what was involved, I knew how the procedure was generally performed, and I knew the possible outcomes. There is the danger that I will not be able to speak any better than I do now, and that it might even be worse. As I’ve been without a true voice since the original cancer, though, and I barely speak now, I can’t see this as a loss or something I am not already used to. I do plan to record myself saying various things that are important to me. That includes things I say to my dogs, because they are just as important to me as the people in my life.
There is the possibility that I will not, in fact, be able to eat by mouth after healing from the procedure. Again, I say: I am already at this point, and much as I’d like to be able to eat real food again, it is highly likely I will have a feeding tube in place for the rest of my life even if I do manage to eat by mouth, simply to ensure I can get enough calories in to sustain me, given how difficult it is for me to eat.
I’d already made up my mind in the office as we were talking and looking over the scope images, but I knew I had to talk the most important person: mom. Two weeks from yesterday, we will head back to the ENT, to have a talk with him, the plastic surgeon who will want to look me over for the best place to take a flap of skin for resectioning, the speech therapy woman (who was the one who I saw for the original swallow test), and the ENT’s primary nurse. When I talked to my mom after the visit, and told her everything, it was clear to me she also knew that this was indeed the correct path. As she said, we may look at a terrible situation and feel badly/pitiful/pissed off for about a minute, but then we get ourselves together, make the decision, and deal with it head on.
Which is what we will do. The visit on the 19th is essentially a pre-op consultation, and we will make a decision then on when to have the surgery.
The only complication here is that I have someone going on vacation the first week of April, and I have bees coming in March and April. I also really need to go into overdrive on some of the things on my todo list.
So I had a CT on my guts yesterday, because I’ve been having some pain around where the balloon is in my stomach. This time around, I got the great thrill of “drinking” barium as well. I’ve done barium swallows before, and the stuff is not totally off-putting, but at least this time I didn’t have to taste it: right down the tube, two 450 mL bottles.
We’re going into the next nectar flow down here, and I’m hoping the established hives will be laying in good amounts of honey I can take off them next month/into October. Word of mouth for our honey is terrific: we heard from a person who knew someone who knew someone who got a bottle of our honey at some point, and that person wanted some. After she got some directly for us, she contacted us not too long after, with eight(!) people who wanted some.
What this means, of course, is that I need more bees! I’m planning on expanding pretty seriously next spring via splits of the hives out in the beeyard right now. This year, I made two splits from hive #8, the hive who kept their 2016 queen well into 2017 but then replaced her on their own. That queen is still there (for now) and she is a laying machine. The two daughter hives: also laying machines. Her genetics are those I want to establish more of in the yard. Better layer = more bees – more production = more honey = better split maker. This is a photo of some larvae and some eggs (the rice-looking things in the cells just below and left of center).
There are also some bee butts just above center: the nurse bees crawl into the cells to feed the larvae as they develop. To the far left is capped brood; the larvae in those cells will develop into bees who will then chew their way out of the cell and then start working in the hive.
The cover crop germinated and is taking over the half frame row that I threw down. More to come of that for soil building!
Today, mowing, including some areas that have been under water for two weeks and avoided the cut they needed. Today, though: down with the high grass!