Since Damian asked: pics of the new teeth! Bonus inclusion of the view of the paralysis of my lower left lip and cheek area – hey, fuck you, cancer, you’ve had two tries at me and haven’t killed me yet! Excuse the ratty shirt, as this was a break during manual labor outside.
We’re on week two (just over, to be technical) with the new fake teeth after having the rest ripped out. In the beginning, it was very, very painful, but as the gums healed, I got my sutures out, and we’ve had some adjustments on the dentures, they’re getting more comfortable. I won’t say completely comfortable, because they aren’t there yet. I haven’t been able to eat real food since the day before extraction, which means these past two weeks have been meal after meal of my usual breakfast: protein shakes and coffees. I’m not really wired for longterm liquid diets; my next visit to the dentist for adjusting the dentures once more is on the 15th. No doubt there will be further addition of the soft form fitting crap they put on the back of the dentures to conform as my mouth continues to heal and change. He says there will probably be about three months of this, to allow for the changes in the bone to settle in, but hopefully at some point before that I’ll be able to use some denture glue to hold the damn things in place so I can try to eat real food. My last attempt at eating, last night, was a disaster and just left me pissed off about the entire thing, while at the same time, intellectually I know that some people have it worse off than me, and I had Roger Ebert in mind at the time, given that he was unable to eat or speak after the last round of cancer bullshit he went through. And today, sadly, he died, so I’m still better off than that.
On we go, though: the great reframing of 2013 continues. The back garden is entirely reframed and ready for weeding, to be followed by hauling dirt/poop to top them off. My sister and I started on the front Tuesday, and I hope to finish that all off by this weekend, as it’s time to plant things that can be directly sowed given that the weather has now turned warm and is staying there instead of giving us random freezes. Plus, the flats under the lights in the barn are suffering from a too long stay – again, thanks to the freakish weather – and they need to be freed and into the frames as well. With any luck, by next weekend, we’ll be ready for the temp labor to run around frantically with wheelbarrows topping everything so we can get our real season underway here.
At the beginning of February, I went in for a bilateral coronoidectomy, a procedure that (it was hoped) would give me a larger oral opening and relieve the paltry 10mm space that was making it virtually impossible to eat, allow the dentist to work in my mouth, and so forth. That procedure was – for my circumstance after seven years of an ever-reducing opening – a resounding success: intraoperatively, they managed to open my mouth to 30mm before my jaw started dislocating. A few days after the operation, my opening was at 15mm, and during the followup last week, measured at 18mm. The single biggest problem is that those muscles are so unused to working that opening my mouth only using those muscles doesn’t really show the extent of the opening.
And so it was today at the dentist, whom I visited to talk about teeth. Implants are pretty much out of the question given the radiation to the jawbones and the risk of osteonecrosis (not to mention the possibility that the implants would simply fail to stay implanted and the potential of the posts to fall out, much like one of my repaired teeth that had a post buildup did), so our discussion revolved around dentures, and specifically, full or partial, and were any of the remaining teeth viable? I have six teeth remaining on the bottom; those all need to go, as they are either lose and in danger of snapping off, or they have recurrent cavities around the edges of where the crowns have been placed. On top, I have ten teeth left, all of which are in some degree of decay, but all but one of which are actually in fairly good shape, considering.
But, we’ve reached the tipping point on the tooth business, and instead of fighting a losing battle for the top teeth, which may have supported a partial denture but which would eventually have to come out anyway and thus result in the requirement to do a full denture, I’ve decided to go ahead and bit the bullet (so to speak) and have the rest of the teeth extracted. Since all my extractions are things I have to pay for myself, as I have no dental insurance, I’m hoping my oral surgeon will cut me a deal.
Today they also did impressions at the dentist’s office, an adventure in and of itself, since my opening is wider, but not as wide as a normal person’s, and the usual impression trays were still not fitting into my face. A little wrangling and adjusting/shaving down some trays, and away we went, managing to get all the impressions done on the first try each. Wondrous!
In about ten days or so, I’ll be heading off to have the teeth pulled and then to the dentist post-extraction to fit the pliable membranes under temporary dentures while the bones heal and my mouth reshapes itself. From there: hard plates, and a real full mouth of teeth for the first time in over half a decade. It should do wonders for my nutrition, which has taken quite a hit as more and more teeth have been yanked.
Overall: although I’d have preferred not to have been doing all this during the spring, as it’s put me behind on my gardening work, it’s still movement in the right direction to get back to some semblance of normality. Or as normal as things can be, anyway.
Surgery was a success, although I wound up staying overnight in order to get my uncontrolled puking (from the blood swallowed during surgery, primarily, along with general pain) under control. They also wanted to make sure I was taking liquids orally. I finally got to see my face today. Wow. One of the doctors said it would probably get worse than this before it starts getting better. That should be something to see.
I also have a humdinger of a bruise on my arm, courtesy of the night nurse trying to get an IV in for the med pump. She finally gave up when it became clear that location was not working, and put it in my elbow. I wound up with matching IVs in the crook of each arm, which made moving around and doing things like trying to drink from a cup rather interesting.
Guess who has some potential good news about getting their jaws pried apart? Me. After waiting three weeks to get an appointment with the original ENT who did my surgery, and then waiting an hour and a half past my appointment time to see him today, we talked to him about options to do something about the horrible trismus – going on over seven years now. The beauty of having been operated on by the most respected and senior fellow in his department at that hospital: the ability to be walked personally, by him, up a floor to talk to the surgeons there, and be put into the hands of another maxillofacial surgeon who took about three minutes to suggest a surgery I’d read about some time ago, but which everyone else seemed to think was probably not worth doing: coronoidectomy. He couldn’t guarantee this would solve the problem, of course. But at this point, having an oral opening down to 12mm, which is 2mm lost in the past year alone, I’m willing to try anything – even though it means being intubated through the nose and more PT afterward to keep working on getting back to some semblance of normal (and hopefully wide enough to get teeth in, given the rate at which they’re crumbling under the aftereffects of the radiation). So, they’ve put it in with their scheduler, who will call us with some dates and we’ll go do this thing to see if it will help. No one looks forward to surgery, but I am, as they say, cautiously optimistic.
Such as it is – or isn’t. We had a couple of days of lows in the 20s, but that’s what passes for winter here. Today, we maxed out at 88 in the sun in the front garden. Each year is getting hotter than the last, and still people deny that global warming is an actual event, occurring in their lifetimes.
Much of my winter will be spent redoing the frames around the farm, to get rid of the wood that takes a beating and then warps or otherwise falls apart with roofing metal that will probably outlive me. This week, I spent two days redoing the herb garden frames after spending three days viciously ill with some kind of crap. After two days, the frames themselves are completed, and now need to be finished off by topping them with a good soil mix, relaying the irrigation lines, and bringing in some fresh mulch to freshen what’s there and cover the now bare spots left by the rearrangement. Oh, and putting some seed in, because while we may get a couple of random days of freeze between now and spring, it looks like it’s going to be more springlike than winterlike for us moving forward.
We had one hive of bees abscond, but the other two are well, for now. I’ve ordered up two new packages for the spring (to be delivered in May), and will need to build a new set of brood boxes for the second package since we have the now empty brood boxes for the other package. I burned the frames from the vanished hive as a precautionary measure. After the flames were out and I was scraping up the ash and pins from the frames, I saw some bees flying around the pools of solidified beeswax.
For now, I’m ill with what seems to be a relapse of whatever I had earlier in the week. I’ve had the flu vaccine because my doctor always bugs me about it – I’m now in the “at risk” group thanks to (fuck!) cancer and the effects of radiation and chemo – but it surely feels like the flu. Maybe I’m in that 35% where it turns out it isn’t effective. Whatever it is, it needs to go, because there’s a lot of work to be done, seeds to start, and a season to prepare for, even if the season appears to already be here.
Of the mouth, that is. We visited with a new ENT who examined me for the first time, and I have to say that sometimes it’s nice to get some fresh eyes on things – someone who is not completely familiar with my long, oddball history with oral cancer and the aftereffects. He thinks the problem is the muscle at the mandible rather than fibrosis, but wants to look at my last CT to check it out. He also wants to use the flexscope on me (that’s the one they snake down your nose to look at the back of your mouth and throat when you can’t open your mouth), something he could not do Tuesday, but wants to do next Tuesday on our followup, by which time he will also have the CT report and the scan itself. He asked if, when I ate soup or other liquid-y foods, I had issues with leakage. I told him I had gotten pretty good at keeping it in most of the time. He asked me if I drooled, at which point I laughed, because yes, in fact, from time to time, I do. He pointed out that I have some paralysis on the left lower side of my mouth, which I’d not really noticed as such before – I’d chalked it up to the chunks of muscle and nerve they removed during the surgery, which in turn affected my ability to fully close my mouth. I was right, but not for the precise reason.
In any case, we go back next Tuesday to see him again at which time we’ll have some kind of idea on a possible path forward. Which is good, because not being able to open your mouth is a real pisser (and because I have another tooth that’s cracked half off and it needs to come out, which would be a lot simpler for all of us involved – particularly me – if I could open my mouth a bit wider than 12mm).
So again, for those of you stumbling across this site because you searched for oral cancer: make sure that even when you’re feeding through a tube that you’re opening your mouth throughout treatment. Trust me, you do not want to go through the things I’m going through.
“Or arm th’ obdured breast/With stubborn patience as with triple steel.” Milton, Paradise Lost
And why do I have to remind myself of patience? Because the ENT was not available today (surgery is my guess), and my appointment was rescheduled for Tuesday. Yesterday was a crappy day anyway, as I’d spent the late night Wednesday/into the morning today at the NOC building out a couple of servers, then moving someone’s accounts around and blah blah blah. It ended for a bit at 0630 this morning with a migraine and a try at a nap (nope) then more work and another try a bit later for a nap (nope). Too tired to sleep, apparently. But hey, those rebuilds are done and I’m back to the original puzzle that led to one of the rebuilds in the first place, so it’s like traveling in time!
But, the ENT: very disappointing, and yesterday the reschedule on top of everything else really dealt me low. Today seems to be better, and hopefully by later tonight I’ll be able to get some sleep. Oil change tomorrow. Yeeha! A semblance of something approaching a real life.
One of the things I’ve talked about before was the lack of emphasis by all the medical folks on maintaining the opening of my mouth during treatment. They were (and are) all wonderful people, and I wish this part of things had been addressed before it got to this point. After nine months of eating through a tube, plus the radiation to the jaws, and the lack of general use, my oral opening went down to about 15mm. After seven years, it’s down to around 12mm, worsening despite efforts with the torture device for passive stretching. Part of the problem is that this came about long after the problems had solidified, with the fibrous threads and scar tissue really taking hold and conspiring to continually clench my jaws together.
We – and by we, I mean my mom – spent days on the phone, trying to find anyone who had experience in dealing with extreme cases like mine, or who could offer any help at all. Some of this is for obvious reasons: I need to be able to open my mouth, and if it continues like this, that won’t be possible at all. Some of it is psychological: with a vibrant imagination, I can envision situations where I’m unable to breathe and the EMTs/medical folks are unable to help because they can’t get my mouth open. From time to time, this actually induces a bit of a panic attack, which feeds the really nonexistent emergency, which in turn feeds the panic. Not a good cycle to be in at all.
After hitting dead ends and receiving promises of callbacks, I resigned myself to having to expend really serious time and energy hunting around the country. But, we got a call back from one of the ENT offices, saying they might be able to help. “Might” is better than “no”, so on Thursday, we will be heading over to see this doctor and determine if there’s anything they can do to get me back on track from an ending I can see all too well.
Last Friday, I had a tooth pulled. To be more precise, ANOTHER tooth pulled. It was the last tooth in my head that had, as yet, not had any work done on it. From the outside, it looked perfect: no cracks, no decay showing, and only a bit crooked in my mouth from the effects of other shifting teeth. A few days before Friday, I suddenly started having issues with that tooth: it hurt to just put pressure on it with a finger. When eating or drinking, anything hitting that tooth cause some white hot agony in my face. A visit to the dentist showed the tooth was finally joining the crowd and heading down the same path: a root canal, followed by a post and build. That is always now followed by a cracking or shearing of the tooth and/or the resin or both, which necessitates another rebuild, followed by a crown prep, and finally a crown. Since my opening is down to 10mm total, getting a brush in my mouth is an amazing achievement by itself; managing to get the brush around enough to do thorough brushing at the gumline is practically impossible (but I make the effort anyway). In the end, each tooth that has been crowned faces the same destiny: eventually decaying at the gumline and then under the crown to the rest of what was left of the tooth. Since by that point there simply isn’t enough tooth left to build on, I go get the thing pulled.
Now, imagine that you do not have dental insurance and that everything you’re paying for procedures on your teeth are being paid out of your own pocket. Imagine further that every single tooth follows this path, from root canal to crown, with one or more rebuilds in between those two processes. At the end of the day, each tooth could conceivably wind up with $800-$1000 of work sunk into it. For this tooth, I decided to skip to the inevitable end of the story, save myself the pain of going through each phase, and save myself about $700: out it came. The tooth pretty much shattered when the oral surgeon grabbed it to pull it out, which then required him repeatedly lifting the tooth and snipping off another piece, because my jawbone refused to give it up peacefully (which, I think, speaks volumes about the general healthiness of my jaws, given that osteonecrosis – bone death – is a very real concern for people who have had their heads/necks blasted with radiation). Then we got to the root, which would not come out at all. That, my friends, is what the drill is for: to drill away a piece of the bone to allow the extraction of the last piece of the root. And that, of course, then required stitches to sew together the flaps of the soft tissue to stop the bleeding. With some gauze shoved down into the socket, the bleeding slowed and then stopped completely within 45 minutes or so of extraction.
Stitches are annoying, especially in the mouth. If later today was not the day of their removal, it’s likely I would be cutting them out myself, much like dogs and cats will pull theirs out if given the chance.