I have had some adventures over the last couple of days that deserve a good belly laugh. Why am I writing/laughing at 2 in the morning? Find out below as I describe health problems I have never before revealed in a Tumoriffic post!
First of all, there is something I am ashamed of. I have had mild iron deficiency for years. Iron deficiency is not usually shameful, but I never got around to getting it worked up, and that makes me a hypocrite. (Patients, do as I say, not as I do!) Iron is the most important part of the compound called heme which carries oxygen in your red blood cells (mine too, actually). If you do not have enough iron, your body will not bother to make as any red blood cells (causing anemia) or be able to absorb as much oxygen from the air. This can kill you, it's really bad, but you can actually get away with a pretty low number, and mine is only moderately low. However, the kicker is, where is the iron going to?
There are three reasons as to why one's iron might be chronically low. One might not be able to absorb iron efficiently (as in celiac sprue, or after gastric bypass surgery), one might not be getting enough iron in the diet (vanishingly rare), or one might be losing blood. Assume bleeding until proven otherwise.
Menstruation is the most common cause of blood loss-related iron deficiency. I have never been able to menstruate, though, hard as I've tried. Blood loss through the gut is the second most likely cause. You can actually bleed to death inside your gut and never know it. Blood loss through the gut is scary. Think of spooky stuff like gastric ulcers, stomach cancer, and colon cancer. If you don't know where the blood is going, you really shouldn't wait around before getting a work-up, so I am duly ashamed.
So, I had a colonoscopy, which was the usual joy ride, but it did turn out that all was well in the end.** There ain't no colon cancer in Tumoriffic, and I hope to keep it that way! Unfortunately, that was months ago, and with all this fun going on, I didn't rush to the next step, an esophagogastroduodenoscopy (known to the in-crowd as EGD) to look for a bleed in my esophagus, stomach, or the first couple of inches of my small intestine (aka, the duodenum). Now that I am on sick leave, I figured I'd make the best of my free time and get an EGD.
[Now, we interrupt this narrative to describe the other problem that played so large a role in yesterday's events.]
Since early 2006, I have had trismus,** more commonly known as lock-jaw. It's not because my mother is a W.A.S.P.**** It's because my face was char-broiled in x-ray radiation in 1981 and then proton beam radiation in 2005. In early 2006, after I finished chemotherapy, my jaw clamped down permanently. I am unable to open my mouth more than a little finger width. It's a bit inconvenient. I have to cut up food in small bits, so it takes a long time to eat. However, it would be much more disabling if I were a zombie from the Walking Dead, or a vampire.*****
The trismus has become much worse lately as my main jaw muscle (the masseter) has started clenching up, causing severe right-sided headaches. I initially thought this was the tumor inside my cranium squashing my brain, but I noticed that my teeth were crushing together, and my cheek was sore. Maybe it has been stress, but I can't imagine what I might be stressed about.
The day before the EGD, my go-to neurologist, Dr. Brain, gave me gabapentin to stop my masseter from spasming and giving me a headache. I started that night, and it worked like a charm. But, by morning, when K/BWE drove me to my old hangout, Ben and Jerry's Hospital, I was zonked out. I faded in and out and could barely sign the consent forms.
I was wheeled into the operating room, and there, the challenge began. There were two scopes on a table. One was the size of a horsewhip or a colonoscope,****** and that's apparently the usual one. Everybody could see that one was hopeless. The other was a bit bigger than a cocktail straw or spaghetti--about the size of a cystoscope. (They use that to look inside your bladder. Imagine how they get that in!) That was better, but they still had to make sure I didn't bite down on the thing. That was the real puzzle.
I perked up, since this seemed a fun game, and the endoscopy team and I brainstormed into how to do this. Usually the patient has something like a binky with a big hole in the middle between their teeth. That was really made for the larger endoscope, though, so no matter how hard I pulled on my lower jaw, and how much lidocaine they smeared on my masseter, there was just no way of getting it in my mouth without knocking my teeth out. I like my teeth, so that was not an option.
What to do, what to do? I had an idea. Why did we have to use a binky-like object? Wouldn't any object that I could put between my teeth that was larger than the little scope do? So, they cast about for one, finally settling on a biteguard--what they use to keep you from biting off your tongue during shock therapy, just like in One Flew Over the Cuckoo's Nest. ******* I pulled off a stellar Jack Nicholson impression, and it worked! For some reason, they did not want to sedate me much, so I got the unusual experience of seeing on live video my own stomach, and my very own duodenum (bonus!).********
They found nothing to explain the iron loss or the anemia. What did they say? Go ask a hematologist!********* That's very convenient since oncology and hematology are the same field (although many subspecialize), and I'm going to an oncologist for that other reason.
Anyhow, after the procedure, Kathleen drove me home, and I crashed on the bed and slept until dinner cuddled up to Willow. So that is why I started writing this at 2 in the morning. (I don't know what I'm going to do about the jaw. It's not worth going around feeling like a zombie all day, especially if I can't eat like one! Mmm. Brains!)
Be well!
Tom
*John Lithgow as mad scientist, Dr. Emilio Lizardo in Buckaroo Bonzai, Across the Eighth Dimension
** For your next colonoscopy, instead of clearing your bowels by guzzling the rabid skunk vomit that is magnesium citrate, use polyethylene glycol (Miralax). It doesn't make the bowel clearing part any more fun, but the other end of the process will be much more tolerable. Ask your gastroenterologist why there are not letting you use polyethylene glycol instead of skunk vomit.
***I am not talking about Emperor Trismus, a little-known Roman emperor who directly preceded Aurelian during the crisis of the third century. Actually, there is no such emperor. Trismus was a poet in Ancient Rome who invented the predecessor to the modern dirty limerick. (That too is a lie.)
****I once had a teacher so W.A.S.P.y that she actually spoke with teeth totally closed. It's a thing.
*****That brings up a whole other weird thing about my face. When my jaw first started clamping down, my surgeon gave a jaw-stretching device. It's a machine with two plates that go under your teeth and a gizmo that you squeeze to separate them. The trismus was all on the right side where the radiation had been, so I would put the device in that side.
One day, I noticed that the bottoms of my top teeth on the right did not exactly overlap the tops of the lower teeth. Part of what was left of my poor, abused right maxillary bone (which carries the teeth of the upper jaw) had completely broken off from the rest of my face. I didn't even feel it when it happened. It's still there to this day, just floating in the tissues of my face with the teeth of my right upper jaw useless for chewing. I am truly special!
******Maybe it was a colonoscope. I do hope they rinse them in between procedures!
*******Luckily Nurse Ratched was off-duty that day.
********As the scope went down my esophagus, it made this sound like the one you would make if you scrubbed glass really hard with Windex, "REE-UH, REE-UH, REE-UH." I wondered if my esophagus was going pop.
*********Why not a third endoscopy? Unlike the esophagus, stomach and duodenum, which, together might be 2 feet in length, unlike the 'large' intestine, which is about 5 feet in length, the 'small' intestine is 20 feet long. No endoscope can go that far, so what they do instead is a capsule endoscopy. A little camera is fit into a capsule. You swallow the capsule, and it goes all through your system taking pictures, like some kind of sicko tourist. BUT, they can't fit one of those through my teeth, and that might be a good thing, since I have a hard enough time swallowing some large pills that can fit through my teeth.
This dragonfly has been avoiding getting her colonoscopy. That doesn't mean you should!
No comments:
Post a Comment