Haven’t posted here in forever. I periodically think of things to write, but I never get around to typing them up. For this, though, I think a lengthy post is necessary, so I’ll try to muddle through despite being horribly distracted by life right now. I suppose I’ll begin in the beginning because it’s the easiest place to start.
Earlier this year during my typical “sinus infection/sore throat/earache” period, which unfortunately lasts a while, I noticed a lump in the roof of my mouth, kind of like if someone put their finger in my nose and pushed down really hard to leave a finger impression through the bone. It didn’t hurt, it didn’t burn, it didn’t itch, it didn’t do anything, and if I couldn’t touch it or see it, I wouldn’t have known it was there. I figured it had something to do with my rotten sinuses, so I left it alone, figuring it’d just go away when the “sinus infection/sore throat/earache” period went away. Well, it didn’t.
I went to the doctor for unrelated aches and pains and figured I’d point it out to him because it had been maybe a month or so since I first noticed the lump and it wasn’t going away like I’d expected. He poked at it, went “huh,” then directed me to a local ENT. The appointment with the ENT wasn’t for like a month, and in that time period, the lump doubled in size and even became somewhat mottled at one point, though it went back to a uniform “roof of mouth” color before my ENT appointment. The ENT poked at it, went “huh,” and asked me a bunch of questions about the lump as to how long it had been there, if it hurt, yadda yadda, and he set up an appointment for a CT scan. He didn’t know what the lump was, but he wanted to see if it was invading the bone or other tissues in my mouth. He also did a scope of my nose, which felt weird, and saw that it wasn’t invading my nose or anything, so the lump was local to the roof of my mouth. At this point, both doctors had referred to it as a cyst or fleshy mass because no one knew what it was. Maybe the CT scan would help!
It didn’t, really. The CT scan revealed that the mass wasn’t cystic at all, but at least it wasn’t invading the bone or surrounding tissue, so the possibility of malignancy was reduced though still possible. Dr. Moss numbed the lump, stabbed it with a metal straw, used some crazy scissors to snip bits out of it in a few places, put those bits in a jar, then stuck the jar in his lab coat, presumably to take it to a lab somewhere. Left with holes in my head, I lisped for about two weeks and was reduced to eating soft foods only on the right side of my mouth, away from the lump, which was slightly bigger than before. The biopsy results were supposed to be in after a week, but I was called and told that they weren’t in after a week and a half, so I had more time to heal as they worked. If the biopsy didn’t show anything, he was going to do a deeper biopsy, and I wanted fewer holes in my head so I figured he could take all month with the grisly bits he had removed from the mass.
When the results did come in, it was in the form of a phone call to tell me that they had had to send the mess to the Mayo Clinic, and the Mayo Clinic couldn’t determine exactly what the growing mass was in my head. They called it a “benign metamorphic adenoma,” but over the phone and at work, I misheard them and thought they said “adipose,” which is a lump of fatty tissue, not a normal thing at all for the roof of the mouth. An adenoma is basically a tumor that occurs in glandular areas like the salivary glands. “Benign” sounded good because that meant it wasn’t spreading and I wouldn’t have to have chemo, and “metamorphic” just meant something to do with it growing, which it still was. It was moving further to the left side of my mouth, getting near the gumline, and it was pushing back onto my soft palate, not mention being thicker in general. Plus there were two holes in it, making it appear a vampire bit me on the roof of my mouth, those sick vampires.
Another appointment was made to talk about the results of the biopsy and set up a date for surgery because even at the get-go, Dr. Moss told me that I would have to have surgery to get rid of it one way or the other. By the time this appointment rolled around, the lump had gotten even bigger, pushing further into the middle of my mouth and further along the gums, now threatening my molars. Dr. Moss wanted this thing out NOW because the rate at which it was growing made it more likely to be malignant than not, and removing it might screw up my teeth unless we got it out ASAP. He wanted to do it June 26, but seeing as how that was only four days after our appointment, I didn’t think I’d have time to get babysitters scheduled or get time off work without screwing everyone at the library up. Besides, if we did it July 3, I would be able to spend July 4 with Ian because he’d have the day off work, and trust me, I want the husband around. He puts up with my shit all the time anyway, and since he can’t be there for the surgery, I at least want him there the day after.
So we scheduled the surgery for Tuesday, July 3. He’s going to do a nasal scope just in case because while the first one was OK, he wants to double check to make sure nothing’s growing in there either. He’s going to remove my adenoids, which should help with my chronic sinusitis, and he’s taking my tonsils out (he’s always called them “cryptic” anyway, meaning they’re a little abnormal to begin with), which will get rid of my tonsil stones plus my chronic tonsillitis. He’s removing those bits just because he’ll be digging around in there with a knife anyway. The real fun will be the tumor. He’s going to have to cut a centimeter all the way around it, then scrape it out all the way to the bone, taking some of my gums and soft palate with it. This will leave my skull exposed and only about half of the rest of the roof of my mouth left. The blood vessels, salivary glands, and skin will gradually grow back over the course of about six weeks, but in that time period I can’t have any acidic food for fear of corroding the bone (plus it’ll hurt like a bitch) or any crunchy food for fear of scratching the bone. Any damage done to the bone will be trapped under the skin once it grows back, and the chance of infection is pretty dangerous. I’d rather he not have to remove the skin again just because a bit of Dorito got lodged in my skull, so I’m following the liquid diet then soft foods rules very closely for those six weeks. The liquid diet probably doesn’t have to last that long, but seriously, who’s going to want to eat much of anything with their skull sticking out?
I’ll be on pain killers, to be sure. In between, I’ll be able to take liquid children’s Tylenol to help with the inevitable fever from the tonsillectomy and adenoidecotomy (if that’s a word, which I doubt it is, but I’m too lazy to look it up). Regardless, being on a liquid diet and more or less being unable to speak is going to suck majorly for the first several weeks. I had trouble enough talking with just the holes from the biopsy healing. Imagine not having half of the roof of your mouth and carrying on a conversation. Not happening. I have a dry erase board that I’ll keep with me on the couch so I can communicate with my caregivers. My little brother Simon is taking me to and from the surgery and will watch me during the first dangerous hours, then Ian will take over on the 4th, with Simon coming back to stay with me the 5th while Ian’s at work. My older sister Katie, who is studying to be a nurse, has volunteered to come down and stay with me the weekend, and it’ll be awesome having someone who’s familiar with dealing with invalids around, plus she’ll be fun to knit with since we won’t be able to carry on conversations. After that, I should be out of the woods, more or less, but I might recruit other family members to come stay with me just in case I’m too weak or cranky to take care of myself. I’ll go back to work part time after two weeks off, depending on how well I feel. I won’t be able to work at the desk with the public for fear of infection (those books are gross, seriously), but I will be able to sit somewhere and work on the databases or grant or websites, though I still won’t be talking much, so I’ll probably drag my dry erase board in. It’s going to suck being silent, but it’s going to suck more not being allowed to drink Mello Yello for over a month. Well, OK, not being able to eat for several weeks and then not being able to eat normally will suck too, but I’m sure I’ll get used to that. I’ll never get used to not talking.
So there you have it. My tumor in a nutshell, or in my mouth where it actually is. Once Mr. Lumpy is out, they’ll send it off for more testing to try and determine what it is, and if it turns out that it is malignant, I get to do radiation therapy for a while. Otherwise, it’s just a matter of getting it hacked out and then healing up afterward. July is going to be a long month, but I’ll get through it. I have plenty of books, Pokémon games, yarn, and company to keep me going. I’ll try to post to my Facebook page periodically to keep everyone apprised of what’s up, though I might not be too great at responding. This post was pretty long-winded, and it would have been better in sections over the period in which Mr. Lumpy was growing, but I’m easily distracted and not so great at keeping my blog up. Maybe I’ll post again next week after the surgery. Maybe I won’t feel like it. We’ll see.