Tag Archives: oral cancer

To medicate or not to medicate, that is the question

For years, my blood pressure has been high every time I stepped foot into a doctor’s office or hospital. Not just a little high, but HIGH: anywhere from 150-170 over 100-130. The kind of readings that forever make the person taking my vitals ask me if I’m on blood pressure meds. “No,” I say. “Never have been, because my blood pressure is never high except when I come to see you.”

During the dark days of February this year, while I was in the hospital, my blood pressure sometimes rocketed up into the 180s (systolic – that’s the top number), at least once up to 200,  and the nurses would look at that, then look at me, ask me if I had a headache, dizziness,  or chest pain (no), and the doctors would order something to lower that to a better range ASAP. After all, on their charts, readings over 180 are in the emergency care bracket; i.e., the “is this person about to have a heart attack or stroke out on us?” range. While I was there, the med generally shot into my IV was hydralazine, which I found made me jumpy and anxious. So, on top of that, down went a xanax, to keep me calm. About an hour-ish later, they would take my blood pressure again, and the readings were anywhere from 110 to 130 (systolic), and that made them happy.

Fast forward to being discharged from the hospital, with two meds for blood pressure and an order to check in with my primary care physician. One was amlodipine, taken once and day, and the other was hydralazine, three times a day. My primary care doctor dropped the hydralazine and replaced it with a one per day lisinopril. I found my bp still bounced around, despite the meds, but a lot of times, when taking my bp, it was low. Very low: often the systolic was under 100 and the diastolic under 80. While this falls into the “normal” range, sometimes it was as low as 75/48 – far too low, and what it read Friday morning at 11:30, according to the record book I’m keeping.

Why does this matter? Because Friday afternoon, after feeling pretty good (although requiring a break that morning after 11:30, as I’d been out weeding), by Friday afternoon I was getting the hot/cold alternating feeling and a queasiness that told me I was in for a round of puking – or, in my case, dry heaving, which is what I mostly do. I had an orange just after 1 PM, and my bp was 94/57. Somewhere between 3 and 4 PM, when those alternating waves of hot/cold had started, the heaving began. It went on for over four hours. Ironically, when it began, I had just begun grinding up the anti-nausea meds I take, but had not managed to get down the tube. Once the heaving starts, it’s too late. So, for those hours, I sailed between contracting just about every muscle in my body as it tried to expel whatever it thought it needed to expel (but couldn’t) and napping in exhaustion briefly before the next round started.

The bad thing about all this is that the combined birthday party for the MonkeyBoy and the Soul Eating Baby was set for Saturday, and I was supposed to be smoking a couple of butt and making a batch of barbeque sauce. That, of course, absolutely did not happen, even though by Friday evening the waves of heaving had finally passed.

I finally managed to get the anti-nausea meds plus the other things I’m supposed to take down the tube, get some water in me, and basically slept on and off into Saturday morning. yesterday was much better, and today even more so, although I’d planned to climb into the bee suit today and do a quick, non-strenuous check of the hives. Tomorrow may be better for it.

I know you’re not supposed to do this, but I dropped the bp meds completely, beginning Saturday morning. I’ve found if I take my bp right when I wake up, it tends to be a bit high, but the rest of the time, it has been low: 99/67 this evening at 6 PM, before a tube feeding. Remember kids: it really isn’t advised to go off your meds without your doctor’s stamp of approval, and even though I did it in this instance (because I am the Captain) I do not recommend it.

So, things are a bit weird on ranch in the blood pressure arena, and there is going to have to be another chat with the doctor about this business, as this should not be something to have to worry about in addition to all the other things swirling around in this  current medical non-crisis-but-annoying-thing in March.

Also, fuck you, cancer, for making me so susceptible to aspiration pneumonia.


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.

Say cheese

Tipping point

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.

Chasing possibility

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.

The quest for an opening

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.