Well, not that kind of stoned (unfortunately). Tuesday night during the night I thought I was in a bad position, and kept turning over to ease my back. When I woke up fully, still had some lower left back pain. Started about my day, but as the day wore on, I had waves of pain that went from a 2 up to a 6 (on a 10-point pain scale).
Not horrible, but it was radiating into my gut, as well. I met a friend after work to help him pick up a new car, and the pain started pushing up into the 7 range. Bailed on him (did get him to the dealership in Corinth) and drove to the UTSW ER. They put me in my usual room. Actually, not there often (I think 5 times total), but I got exam room 28, which I’ve gotten before.
I told the ER doc that I thought it was probably a kidney stone…my last CT scan did show one in my left kidney. Pain swelled up while I was there into the 8 zone. Actually got nauseated. By the time they brought me some morphine (mmmmm, moooooorrrphiiiiiiine), the pain was mostly gone, again, but they dosed me up, anyway.
First blood work came back as “patient is dead.” I think they didn’t completely clear my mediport and it still had some heparin and saline when they did the draw. Second blood work, I was low on RBC, WBC, hemoglobin, and platelets (same as the day before) but not dead.
CT scan results showed…kidney stone had moved into one of the ducts and was causing the pain. Very small (2mm). But, big enough.
So, 5 hours in ER ending up with them telling me what I told them when I walked in. No big pain, today. Hoping that it can clear on out w/o another bad episode. Urologist tomorrow morning (that will be my 15th UTSW doctor I’ve seen since last October). Hopefully they can do something to help prevent a recurrence. This is almost certainly related to cancer treatment, though, so … well … I guess I’ll just have to wait until tomorrow and see what they say.
Well, I’ve not updated in a while since really not a whole lot has happened for a while. So, here is the big catch-up post. (mmmmmhhh. ketchup.)
So, the kidney stone did pass unremarkably. I’ve still got one small stone lurking in that left kidney, but don’t expect it to cause as much trouble as that first one. The only lingering effect is that some days I feel the need to go right after I go. Not every day. Not every time. Just when it will be most annoying, I think (like when I’m getting ready for bed).
Of course, since that is now in my rear-view mirror, something else has to crop up. And, this month the winner is…steatorrhea. I’ll spare you the ugly details of both the symptoms and the collection and delivery of 2 stool samples for analysis. Basically, I’m either not digesting fats (which would point to an issue with my liver, pancreas, or gall bladder) or I’m not absorbing fats (which could be some kind of small intestine inflammation). First stool sample ruled out clostridium difficile (aka “c-diff”). Now, they are checking my latest gift to the lab to see how much fat is there. Probably a lot, as I am currently a two-flusher. Fat floats…
My pancreas and liver both looked normal on the CT scan I got just about a week after the symptoms started (the CT was just a coincidence…was actually a follow up scan on the kidney stone). Pancreatic cancer can cause these symptoms, but the CT ruled that out quickly. And, my blood work did not indicate any particular liver or bile system issues. So, the hunt continues.
Until the root cause is determined, I’m just having to live with it. A little uncomfortable and very annoying, but hasn’t had a particularly huge lifestyle effect. If it continues for too long, I could start having some vitamin deficiencies (specifically, vitamins D, A, E, and K are fat soluble and rely on dietary fat uptake for adequate nutrition).
Cancer-wise, I pretty much recovered from the chemo bonus round. Hemoglobin, RBC, and Platelets were back up to the low end of normal on my last blood tests. The small tumors (all 5-9 mm) are still in various stages of destruction, but are not totally gone. So, I’m doing rounds of Erbitux every 2 weeks. This is the chemo that gives me the lovely acneiform rash. I basically look like I passed out in a fire ant mound. But, the rash doesn’t itch (except a little on my neck and head). No Efudex or platinum-based chemo, so the bad anemia side effects from the previous rounds of chemo aren’t expected.
I actually was walking and running a little before all the wet weather moved in. I credit that with contributing to how quickly my blood counts came back up. The first couple of outings I got pretty fuzzy if I pushed my pace at all much above a stroll, but after only a couple of weeks I could trot in 30-second bursts without feeling like I was going to run out of air. Aerobic exercise causes an increase in red blood cells…which I was quite short of after that last major chemo round.
I’ll get a CT scan the first week of November, then based on the tumor status we’ll decide either to keep on the every two week Erbitux or switch to monthly Keytruda or Opdivo.
Now to the “Christmas in December” update…I’ve scheduled the throat surgery to repair my glottic web. On November 27 I’ll go under the knife and the surgeon will slice my vocal cords apart. Then, she’ll insert a piece of plastic (called a “keel”) to hold the vocal folds apart so that they do not heal back together. That will stay in for 2 weeks, then she’ll do another short procedure to remove the keel…at which point I should have a voice again.
One concern that I have mentioned before is that the vocal cords are normally anchored by the vocal ligament to the thyroid cartilage. Well, my thyroid cartilage is only half as tall and twice as thick as it used to be, and for a while was not there at all. So, once she cuts apart the vocal cords she might also have to do something to re-anchor them to the front of my neck. She won’t really knows until she gets in there and starts cutting. So, fingers crossed that that does not present any major complications.
Other than that one thing, this is actually a surgery that is common for people who are undergoing gender reassignment. Man–>Woman the vocal cords are shortened and Woman–>Man they are lengthened. I told the surgeon that, if she had any control over the end result, I would prefer more Isaac Hayes and less Lisa Simpson. But, I’ll settle for whatever I can get. It has been about 15 months since I lost my voice. It will be nice to be able to yell at other drivers, again.
Other than that, I’ll have a visit with my radiation oncologist in a couple of weeks, but don’t expect that to be anything more than a quick review.
So, that is all the news that fits, for now. I’ll try not to let another month pass before I update again…but no update typically means good news (or at least no news). Ciao.
Ok, I should never say that I expect an uneventful week. It just tempts fate too much. After expecting nothing much to happen this week, Sunday night when I went to bed I started getting some upper right abdominal pain. Not bad…nothing like the pain from the blood clot last year. But, it was dull pressure/pain that just kept getting a little worse. So, at midnight I dragged myself out of bed and drove over to the UTSW ER, which was pretty busy for a Sunday night. After about 30 minutes out in the waiting area I got an exam room.
Pain-wise, it still wasn’t horrible…maybe a 3 or 4, which is enough not to ignore but not really enough to beg for morphine. It always seems to surprise medical personnel when I turn down pain meds…I must have been asked 4 or 5 times if I was sure I didn’t want something for the pain.
After repeating my medical history 3 or 4 times (I’m getting too good at that) labs were taken. Then, about an hour later, got an abdominal CT and a chest X-ray. Around 3:30 AM the pain started going down the scale…back to a 1 or 2 (if I thought about it I could feel the discomfort, but if I hadn’t been in the ER I could have slept through it). Finally, around 5:30AM and after finding nothing particularly remarkable on the CT (small gallstones but nothing in the bile ducts that would explain the discomfort) they sent me home.
Well, they said “we’re sending you home.” In reality, I went to Starbucks and had breakfast then drove the 10 minutes to my office, where I crashed on the floor for a couple of hours before getting up and working for most of a day.
So, after all that busy-ness on Monday…the rest of the week was pretty quiet. They did schedule me with a GI specialist on Monday, so maybe will get some clues as to what is causing my gut issues this week. And, my quarterly follow up with my Radiation Oncologist is Tuesday. I’m tempted to say “I don’t expect anything particularly eventful” from that appointment, but I’ve learned my lesson about tempting fate.
Well after that slow last week of October, November has been way too eventful. Two weeks after that last ER visit, I had the same pain. Tried to just “gut it out” since ER didn’t really do anything last time. But, this time it progressed to nausea/vomiting. So, another drive to the ER. They ran some tests but in the end the pain went away on its own, and they sent me home.
The promised GI visit had happened, and his thought is that the cause of my steatorrhea could be SIBO (small intestine bacterial overgrowth), so I’ve been taking antibiotics for that. It is possible that where my intestines were reconnected last year has either narrowed or kinked, causing very slow movement, there, allowing the wrong bacteria to flourish. Well, that is the theory, anyway.
Now, come to a couple of Fridays ago, when I again woke with upper right quadrant abdominal pain that slowly got worse during the day. This time, I bore it through two bouts of nausea/vomiting (5pm and 1am), but then checked and found I had 101.5F fever. Once again I trekked to the UTSW ER, where they gave me morphine. Did another CT scan. And, at 5 am cut me loose with a prescription for percocet (aka oxycodone). I knew better than to just pop one of those, despite really needing something for the pain. So, I drove to a Starbucks not far from my house and had some breakfast and then popped a percocet and waited for it to do its magic.
Sat in a chair at Starbucks with my hoody sweater pulled up and my e-reader in my lap pretending to read. Actually out like a light. Until 8:45AM, when my phone range. It was UTSW ER. They said I needed to come back. Well, I was still way too doped up to drive, but they said as soon as it wore off would be OK. A 2nd radiologist had looked at my CT scan and felt that there was something else to investigate.
So, around 10AM, I again traced that too-familiar route to UTSW ER, where they first indicated my gallbladder should probably come out, but they were waiting for the surgeon to get out of surgery to consult. They also wanted to do a HIDA scan…something that would check the function of my biliary/gallbladder system.
The surgeon came out and said that she really didn’t think gallbladder removal was the best option, right now, and besides there were some other things that were much less invasive that could probably be done (but she didn’t say what those things were). I agreed that not cutting into me was preferable, if there was a reasonable alternative, and she went on her way. They then admitted me to the hospital.
On Sunday, they then trucked me into a procedure room for the HIDA scan. They basically inject a tracer that binds to bile, then use a special camera to watch the flow of bile for a couple of hours. After 2 hours of not much movement (I was watching on a monitor the whole time), they injected me wit some Morphine, which causes the gallbladder to compress and also otherwise accelerates bile activity. I watched for the next 30 minutes as bile moved into and through my duodenum into my jejunum and then across to just under where the gallbladder is (upper right quadrant abdomen) where it slowed substantially. By the end of the 30 minutes, no bile had moved past that point.
Radiologist report said that the gallbladder was never visualized on the HIDA scan, which means that the bile ducts are blocked. So, they told me that they would be doing a procedure to drain my gallbladder (cholecystostomy tube). They explained that a tube would be installed allowing th ebile in my gallbladder to drain into an external bag. Ooookaaay. How long does it stay in? Well, they said. At least 6 weeks, but probably forever. Wait, what? Forever? No. I absolutely told them repeatedly that that was not an option. I’d rather them just take out my gallbladder.
On Monday I was wheeled in for the cholecystostomy procedure. On the way and in the procedure room I told pretty much everyone that I would prefer a cholecystectomy (gallbladder removal). But, there is a chance that after 6 weeks the tube can come out and my gallbladder will be fine. In any event, they have also scheduled me to see a surgeon for what they are calling “elective cholecystectomy.” Not sure if insurance will cover it if it is called “elective.”
Tuesday, finally, they allowed me to go home. The delay was that I had not eaten anything but a little jello since Friday noon. They wanted to be sure that I could handle solid food.
So, now I have a lovely bag hanging from my side collecting dark green bile. They led me to expect 2-5 cups of collection per day. I’ve been lucky to get as much as 3 or 4 tablespoons of collection. Not sure if that is a good thing or a bad thing. Went to dinner with friends last night, and just clamped off the tube and took off the bag for the evening. Didn’t appear to have any ill effects (it did have some bile ready to go when I reconnected, but not much).
This Tuesday I will have my glottic web surgery…step 1 in restoring some voice. They will cut my vocal cords apart (damage from radiation welded them together) and put in a “keel” to hold them apart for healing. Then, in 2 weeks, they’ll perform step 2 and take out the keel and I should be able to start using my vocal cords, again. Maybe not 100% at first, but anything will be better than the low-volume rasp I have now.
Well, this was a very big update for November. I shouldn’t wait so long between updates. But, I have been super busy at work, and the holidays plus ER visits have shortened my time at the desk. I’ll not be able to talk at all for 2 weeks, so maybe that will translate into more sitting and typing time. We’ll see.
Finally, back to a Throat Blog post that is actually about my throat. We’ve been all over the body…lungs, kidneys, gallbladder, and now circling back around to where this all started, my throat.
To refresh, my original tumor was in my throat…it invaded and destroyed most of my thyroid cartilage and, at its peak, went nearly from cricoid to hyoid vertically, and wider than my larynx laterally. It was big. Treatment was loads of radiation over a 12-week period, which successfully destroyed the tumor, however a lot of damage was left behind.
Notably, my thyroid cartilage was almost totally obliterated and my vocal cords were welded together…an effect of the inflammation and damage from the radiation therapy. My cartilage has surprisingly restored, somewhat. The last good image I had of it, it was about half as tall and twice as thick as a normal thyroid cartilage, and it was still reforming.
However, my vocal cords needed more intervention. I’ve been stuck between a whisper and a rasp, now, for over a year. While that works kind of OK in quiet rooms, anywhere there is any ambient noise, I really cannot participate in conversations (or order food). I’ve adjusted a lot, but actually being able to project some volume would really be great. Whispering at idiot drivers just doesn’t have the same effect as yelling.
So, Tuesday I went in for Operation Voice Restore, Part I. This part consisted of a day surgery where my vocal cords were cut apart with a CO2 laser, then a plastic keel was put in place to hold them apart while they heal. Technically, I had “laryngoplasty” which is the same procedure they use when going through gender reassignment surgery to raise or lower ones voice. Keeping my current gender, thank you, just give me a voice (preferrably more on the Isaac Hayes end of the spectrum). My sister went with me and spent what I’m sure was a wonderful morning drinking coffee while I slept.
Step 1 was to get me intubated and to block my airway so that I wouldn’t aspirate anything during the procedure. (This was all done under complete sedation…I knew none of what was happening at the time.) Here’s a shot of what things looked like just before the cut. The metal tube (blocking my airway and also providing me with oxygen) is actually pulling my vocal cords apart, some. Normally I would not have this large of an opening (pre-procedure).
Next, the surgeon used a laser (insert air quotes if desired) to separate my vocal folds. The laser was able to cut and cauterize at the same time, so not really any bleeding.
Finally (for this stage), a plastic keel was secured in place to hold my vocal cords apart during healing. There is another plastic piece attached to the outside of my throat and the two pieces are sutured together to hold it in place.
When I woke up from the procedure (and I wake up very quickly from these modern anesthetics), I was still on the procedure table, in the process of being moved over to a gurney. They wheeled me into post-op for about 30 minutes, then back to the prep room where I’d left my clothes. Pain was moderate, but building, so I made the first of two mistakes of the entire procedure. I took a 10mg Vicodin. On an empty stomach.
I’ve done that before, but then immediately slept for several hours. This time, I had to get up, get dressed, and get out. I was fine while I was in the hospital bed, but as soon as I got up to get dressed, nausea hit me. I actually allowed them to wheel me to the bathroom (where mistake two happened…no, not what you are thinking), then down to the curb where my brother-in-law was waiting to drive me back to their place for recuperation.
We got about 10 minutes away when I started looking for my phone. Nowhere to be found. We called it, and couldn’t hear it ring, so was certain it was back at the hospital. But, where? Find My Phone said it was out on the front lawn of the hospital. I’ve generally found that app to be exceptionally accurate (identifying which room in my house the phone has hidden itself in), but the hospital pretty much whacked all the GPS signals, so in addition to the spot on the lawn that was the most probable location, it also had a circle of doubt that ranged 1/4 mile to 2 miles, depending on when I looked.
Eventually, we tracked it down to the bathroom on the 3rd floor, where the staff had just found it. Between turning around, stopping before driving back to the hospital to give the truck a good search just to be sure it wasn’t there with the ringer turned off, stopping again so that I could empty what little had been in my stomach (and was entirely water) onto some poor businesses parking lot, in and out of the hospital a few times trying to figure out where it was…a 20-minute drive back to their house turned into a nearly 2-hour fiasco…all on me. And the Vicodin, which I should have passed up.
When we got to their house, I found the first horizontal and relatively comfortable surface I could find (couch), covered my head with a pillow, and passed out until early evening.
Now, it has been a couple of days, and my lingering aftereffects are a sore throat (duh!), a slightly numb tongue (just the right half…I suspect a nerve was compressed when they dammed my mouth open), and a need for a nap (didn’t really sleep well due to the nagging pain which, while not agony by any means, was enough to prevent deep slumber). I am also having a bit of trouble swallowing, as my throat is pretty swollen, right now, but that should get better pretty quickly.
I am back to a whisper only. And, too many people are whispering back to me. I did not realize I was such a trend setter.
On 12/11 I’ll have a much shorter procedure where they’ll knock me out, again, take out the keel, then wake me up. Should be quick, and I should be able to get some sort of voice going after that. Not getting my hopes up that it will be my old voice (doubtful) or even that it will be a full voice. But, if it is better than what I’ve had for the past year, that will be enough, for now.
So, I’ve been having some digestive and gallbladder issues for about 10 weeks, now. I met with a surgeon to discuss options for getting the tube taken out of my gallbladder. She actually remembered me from last year when I had the emergency small intestine blood clot surgery. She walked in as part of the surgical team, expecting to see someone laying in bed holding onto life by their fingernails. Instead, I was up and in the guest chair. She said that they were all amazed…none of them had any idea that I could even move myself. But, once that clot was out and the pain removed, I was really not in that bad of shape.
But, wait, I digest…er…digress. Actually, definitely digress, as digestion is the problem I’ve been having. So far, all the doctors seem pretty inclined to blame it all on my gallbladder. But, I have several issues with that. First, my main and persistent symptom (steatorrhea) started 4-6 weeks before I started having any overt gallbladder issues. Then, the first three trips to ER with gallbladder pain, all CT scans showed that there was nothing wrong with my gallbladder (at least, not that could be detected by CT). While there are some small gallstones, none of them were blocking my bile ducts…and none even seemed large enough to do so.
The GI doctor I went to actually planted a seed of an idea that has taken some root. He gave me strong antibiotics to treat a suspected case of SIBO (small intestine bacteria overgrowth). He mentioned that this could have been caused by an area of my intestine where food was moving very slowly for some reason. After getting the tube put into my gallbladder to keep it drained, I immediately scheduled an appointment to discuss what it would take to have it removed (the tube and/or my gallbladder, if that is what it takes). Meanwhile, symptoms continued, although the gallbladder pain has mostly receded. And, I though some more about what the GI doctor said. Then I tied together a couple of words I knew from the various procedure I had and put them into a Google search. The first word was “anastomosis.” In my case, this refers to where my intestines were reconnected after nearly 4 feet were removed. The other word was “stenosis.” I knew this from some neck/back problems I’ve had…cervical stenosis is the narrowing of the channel where the nerves pass through the spinal cord.
My suspicion is that my intestines have narrowed, either due to scar tissue, collapse, or swelling, around where they were sewn back together So, I searched with the terms “anastomosis” and “stenosis” to see what would come up. And what came up was a condition called “anastomotic stenosis.” Pretty dang close. This is not very unusual for people who have had a gastric bypass procedure, and is treatable several different ways, depending on how it has specifically developed. Beyond just the steatorrhea and gallbladder symptoms, several other things have been going on that would be consistent with this:
Very fast to get full when I eat (so I’m slowly losing weight)
Very slow to get hungry, again
Localized borborygmi (borborygmi is the gurgling sound that emanates from your gut). Borborygmi is normal, but usually doesn’t always occur in exactly the same place. For me, shortly after I eat I get a lot of the sound of air bubbling and gurgling and it is always in my upper right abdomen…right where the reconnection point is.
I think it could also explain the gallbladder issues…if the anastomosis area became inflamed, it is very close to my gallbladder and bile ducts and the inflammation could have spread to those areas, as well, affecting their function. It could explain the steatorrhea…since my food is basically sitting in 1 foot of small intestine for a very long time, it could interfere with the proper digestion/absorption of fats.
So, I gave my suspicion to the surgeon. She was quite doubtful regarding my self-diagnosis, but agreed to order an upper GI to either confirm or eliminate that as a possibility. Her diagnosis is still that all the problems can also be explained by gallbladder.
She wondered why I did not go back to my original surgeon, who was just down the hall. Well, basically, it is because that isn’t who my appointment was made with. So, she scheduled me for a couple of tests and advised me to make another followup appointment to go over those test with him in the next couple of weeks.
Well, that sounded great. But, I can’t get in to get the upper GI until 12/26. So, instead of maybe having an answer in a couple of weeks, this looks to drag on for another month or more. Meanwhile, part 2 of my voice restoration surgery is tomorrow, appointment with my GI doctor on Thursday and I have at least one, and maybe 2 appointments with the team that put the tube into my gallbladder next week (I think someone messed up and double-booked me).
So, look for an update later this week on how the new voice is. Hopefully I can start yelling at people on the freeway, again, real soon.
Ok, a couple of updates to start out the new year. First my New Year’s Resolution: 4K.
On the gallbladder front, the Interventional Radiologist shot some dye into the tube sticking out of my side and saw on x-ray that my bile ducts are draining just fine, and that there are no visible gallstones. So, he yanked the tube out. I had booked a room nearby so I would not have to tie someone up for 10 hours on the off chance that I might need a ride…and in the end I didn’t need the ride. No sedation, just a steady pull.
About 2 minutes after he pulled out the tube, though, I started getting some pretty bad pain in my right shoulder. This same thing happened after the procedure when they put the tube in, but I was partially sedated. At the time I attributed it to the awkward position I was in during that procedure. But, this procedure I was flat on my back the entire time. I told the doctor about it immediately…he said it was normal. The nerve bundle going to my gallbladder includes shoulder nerves. So, for a week or so, any time I coughed or did anything else to irritate where the tube had been, both my side and my shoulder hurt. I suppose there could have been much worse places for shadow pain to appear…
A followup with the surgeon who would remove my gallbladder were my gallbladder to need removing and he agreed that there is no reason to take it out. Of course this still leaves open the question of what is causing the steatorrhea.
Upper GI with small bowel imaging showed nothing abnormal. Was really hoping that they’d find something so that there would be something to fix. But, the search must continue. For now, I am taking some pancreatic enzyme supplements on the chance that the issue is related to pancreatic dysfunction. A couple of weeks into that, though, with no change or improvement…I don’t think that is it.
On the voice front, I’m still sans voice. ENT doctor scoped my throat and said that there was still a lot of swelling. As it goes down, voice function should improve. Come back in a month. Meanwhile, the throat irritation keeps me coughing a lot, which probably keeps it irritated and swollen. So, maybe someday I’ll do more than croak out my thoughts verbally. Or maybe I’ll be stuck in this mode, forever. After over 1.5 years of not being able to speak effectively, it has gotten really old. You’d think you’d get used to it. Well, I suppose I have become used to it, but that doesn’t mean I have grown to like it. I am so ready for some improvement here.
Otherwise, I’m feeling fine. Been playing with a new toy (drone) a bit. Getting ready to go to Las Vegas to work our suite at the Consumer Electronics show this week where I’ll announce a major new product in my category. And, I’m not practicing guitar as much as I should, but I have a goal to step up the pace, there, after I get back from Vegas. A friend of mine teaches guitar and will barter lessons for some of my video skills (or I’ll just pay him outright…either way is fine with me).
So, that is how 2019 is starting. Not terrible, but not nearly perfect. Hoping the year gets just a little better as it progresses. But whatever it is will be what it is, and I’ll deal with it as it comes. I can wish for a lot of things, but in the end, reality is what we all have to deal with. Our fantasies (of better health, different politicians, better stock performance, or winning the lottery) might entertain or inspire, but living in fantasy world is not sanity.