Throat Blog — A Fast Start to a Slow Week

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.

Throat Blog — It will be like Christmas in December

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.

Throat Blog — Getting Stoned

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.

Throat Blog — Brain MRI

Well, they did an MRI of my brain and they didn’t find anything. Explains my thoughtlessness, I suppose.

Actually, the meat of the report is:

1. No evidence of intracranial metastases.
2. No MRI correlate for the left frontal lobe lesion suspected on CT neck, suggesting that this was artifactual.

So, on the plus side, complete false alarm. On the down side, I have no excuse for my behavior.

Throat Blog — Update to CT Results

Ok, this post updates the results of the last CT scan to almost entirely good news. After talking over the results with my oncologist, he really believes that the 4 nodules that show as getting slightly bigger aren’t cancer. They are more than likely inflammation caused by aspiration. If they were cancer, they would be doing like the 5 definite tumors are doing…dying. And, cavitation in tumors this small have absolutely no significance other than indicating that the tumor is dying. So, rather than move to an immunotherapy after this round, he’s proposing we do “maintenance chemo” using only one of the drugs (cetuximab/Erbitux) every two weeks. Erbitux’s main side effect on me is the acne-like rash, but it really fades during weeks 2 and 3, so I expect that it will be a non-factor during maintenance.

The one shadow in the results is that I have a brain cloud. Well, he didn’t actually call it that…there is a small something (actually smaller than a BB…it only shows up in one “slice” of the CT) in my left prefrontal cortex. The oncologist thinks it is either a scan anomaly or something benign, but the radiologist recommended a MRI followup, so I’m getting that this evening at 7:15pm. Hope I can stay awake that long. Even if it is a tumor, the oncologist said that it can easily be knocked out with Gamma Knife technology with no hospital stay, no side effects, and no trouble.

Meanwhile, as I predicted, the Week 1 treatment is hitting me harder this round. Just worked a couple of hours each on Monday and Tuesday. Last night, I couldn’t get to sleep until after 3 AM. The skin on my head and face is pretty raw, and I couldn’t seem to find a comfortable position. I intended to sleep late, but between the cat and my normal circadian rhythm, woke up at my normal time, then kind of dozed in and out for a couple of hours before getting up at 8:30AM and coming on into work. Will be nearly a full day (I didn’t get here until about 10AM after stopping for breakfast), as I have to hang around on this side of the world for my MRI, anyway. Might need to close the door and nap…should have brought my binky. My mouth is extremely sore…been having to use the expensive “Magic Mouthwash” w/lidacaine. I think that is also starting to get better, now. Difficult to say…because my voice, such as it is, has reverted to mostly a whisper.

But, I expect to be back on an upswing by this weekend, and will only get better after that. I need to set up a regular mild workout to start getting my stamina back. Getting winded from standing up and walking across the room is not something I want to have hanging around for long. My appetite is still pretty minimal, but I also expect that to start turning around later this week. Managing a full (for me) breakfast, but then only have appetite for a very small lunch and/or (usually “or”) dinner. Got some Udon noodle soup staring at me right now that I should start working on…no way I can go until after the MRI tonight without eating some more.

So that is the update for the week so far. Mostly good news and possibly entirely good news. I’d better get started on that soup before it gets too cold.

A Wreck (and a Wreck)

Driving home, Tuesday, driver behind me gave me a little bump from behind. No major damage, we were both able to drive away after swapping info. He wants to pay out of pocket and keep his insurance company out of it…OK by me, but I still got his D/L and insurance info as backup. Looks like he was wanting to change lanes and checked his mirror at the wrong time…when traffic stopped, he didn’t.

Repair estimate is nearly $1,200. Which is actually less than my first thought, but the bumper piece that would be very expensive is repairable without replacing. So, mostly paint and buff labor expense.

Now to the second wreck…which is me. Wednesday I helped set up a trade show booth in Dallas. My plan was to sit and point. Instead, I ended up doing a lot more physical stuff than I had planned. Plus, any time I gave any direction, I had to repeat myself 2 or 3 times, as only one person at a time could hear me, and had a crew of 6. Got pretty frustrated and very tired.

Thursday, I was still wiped out. I did come to work, but left early and napped for several hours before heading to bed.

Today, Friday, woke up feeling mostly OK. But, when I got to Starbucks and started trying to eat my breakfast, I got my very first bout of nausea. Didn’t eat much, and didn’t toss my cookies, but was worried about it for a bit. Came on into the office, as it is only 15 minutes away from the clinic and I have to go there to get my chemo pump disconnected, so no point in driving back home until after that is done. Think I’ll head there very shortly then head home. Not enough energy to be very productive.

Tomorrow, I had tentatively planned to assist with booth teardown. I’m pretty sure that ain’t gonna happen…hopefully everything will get packed back into the correct crates without me being there.

Throat Blog — Good News/Bad News

So, I’ve been (im)patiently waiting to get the read from the CT scan last Wednesday. Looks like I’ll have to wait until next Wednesday to get the actual reports. But, the doctor did review the reports and gave me a summary that boils down to: “Well, I’ve got some good news, and I’ve got some bad news. Which do you want to hear first?”

So, start with the good news. No new nodules since the last CT scan 3 months ago. And, more good news, the nodules that were there 3 months ago have not gotten bigger. Untreated, they would be expected to double in size about every 3 months.

Now, to kill Pollyanna, the bad news. The nodules that were there 3 months ago have not gotten smaller, either. So, while this regimen is working, it doesn’t seem to be working quite well enough. But, that assessment is real borderline. So, I’ll do a 5th round of the current set of chemo, then will get another CT and determine what to do from there. If still no shrinkage, will probably switch to Keytruda or Opdivo.

Not looking forward particularly to another Week 1. I’m just getting over the last Week 1. I did not really realize how out of shape I’ve gotten. Mostly, I walk or sit. My most strenuous two activities are carrying my laptop into and out of the house and office and walking up the stairs to the chemo lounge on Mondays. But, yesterday I needed to review some wall art at work. These are 3×6 foot prints on a plastic film that we use at trade shows. They might weigh 1/4 pound each. Need to roll out about a dozen. This activity involves squatting down, pushing the roll so that it unrolls, then standing up and sliding the prints apart. I had to sit down to catch my breath twice. I’ve never been in this bad of physical shape. I basically did nearly nothing and it wiped me out.

So, during this week 3 I’m going to try to do some work on the exercise bike, just to get some aerobic capacity back…or maybe just keep it from getting worse. I can’t commit to doing anything next Week 1 or 2, though. On the one hand, the rash and skin effects from the Week 1 chemo have gotten progressively better (I think there isn’t much sun-damaged skin left to burn off). But, on the other hand, the added fatigue gets worse and lasts longer each time. I would have never imagined that I would actually get tired of napping.

And, with that…I think I’ll grab a small lunch and take a nap.

Throat Blog — End of the Last Week 1

Ok, I made it through my last “Week 1” 3-drug combo week. As expected, I’m more fatigued than the previous three rounds. After the dehydration of the previous round, I’m making a real effort to stay hydrated and fed, but still going to get a full bag of hydration on Monday along with my Week 2 chemo.

Fatigue, though. Bleh. Headed home very early afternoon this week, and barely hit the couch before completely zonking for 3 or 4 hours. The only one enjoying that is the cat. Until he gets bored and starts grooming me. Tiny cat licks on the face. Must be time to get up and eat something. Oh, and drink another glass of water.

I can’t really complain of feeling bad. No nausea (but little appetite, either). No real weakness. Just hard to keep my eyes open after about 2pm. Skin on my face and head looks pretty bad, today, but should slowly heal up this week.

Big thing to look forward to this week (other than naps) is a CT scan on Wednesday. This should give a very good read on whether this chemo protocol has taken care of things. Considering how bad the rash has been, everyone really thinks that it should be doing a number on the tumors, as well (generally severity of rash is positively correlated to effect on the tumors).

I realized that I don’t currently have any followup appointment scheduled for an oncologist to actually tell me the results of the CT scan…and don’t want to have to wait 8 days for the lab to release the report to me. So, emailing the Dr’s office today to set up a follow-up (or at least ask him to send me the summary as soon as he gets it).

I also want to see about getting the raw CT scan data. I don’t have the chops to be able to read it as far as the tumors go, but I can make a 3D picture that images things like cartilage and bone…if you go back to an older post, you’ll see what I was able to do with a previous CT scan (oh, I’ll just make that image the featured image for that post…no need to look for the old post). It would be nice to know what the structure of my larynx looks like, now…it feels like there is more cartilage in the front, but I really don’t know for sure. CT imaging will show it clearly.

So, forcing myself to stay awake past noon. Been working on the last of my Nashville videos (uploading now, post about that should happen later this afternoon). Planning a new video shoot of a guitarist friend, but want to wait a few weeks so that I have the stamina to get it done.

Throat Blog — Just Add Water

After mulling that dramatic 5 lbs in 6 days weight loss, I realized that that could not have been body mass loss. I was eating some, if not enough. So, considered the other probability…hydration. I am not in a habit of drinking a lot of water in-between meals unless I’m doing physically active things.

Sitting at my desk. Driving to/from work. Sitting on the couch. Sleeping. Hmmm, none of those are really falling into the category of “physically active things.” And not eating as much also means (to me) skipping some meals entirely. Which means skipping my main time to drink fluids…mealtime.

So, yesterday I made it a point to keep sipping on water throughout the day. I probably put down a little over 2 liters of fluids. And, this morning, right out of the shower, I weighed a little over 3 lbs more than I did yesterday morning. So, instead of 5 lbs weight loss in 6 days, maybe 1-2 lbs, which is still not great, but also not alarming or entirely unreasonable.

My appetite yesterday was better, and today I also feel more like eating. So, I suspect that during the coming week I’ll be able to pack in more calories (and water!) in preparation for the 4th and final 3-week round.

Throat Blog — Chem-on Down!

Ok, I’m about 66% through treatment and it is starting to wear on me a bit. Pretty evident from my weight chart, above, which plots from beginning of treatment to today. Rounds 1 and 2 (each round is 3 weeks, starting w/a 3-drug combo the first week, then a single drug each of the next two weeks) I got by pretty good. Appetite was a little affected (especially during the first week of each round), but recovered by the end of the round.

The first round, just had a little queasiness for a couple of days, the rash from the Erbitux, but not much else. The second round, the rash was still pretty bad (especially on my head) and I did get pretty tired by the end of the day during the first week, but the 2nd and 3rd weeks I had plenty of energy. Well, round 3 and I still have the head rash (a bit on my chest and back, too, but it doesn’t itch there, so doesn’t really bother me). But the two things most affected now are my energy levels and my appetite.

Even in the 2nd week, my energy levels were pretty low. I went to work every day, but also left early every day. I got into the early afternoon and realized that if I hung around until 5 it would not be safe for me to be driving. So, early in the week I took off around 3. Later held on until about 4. Got home and crashed in front of the TV and tried not to go to sleep too early. On the plus side, I was able to catch some great documentaries (making of National Lampoon’s Vacation…I never knew that Lindsay Buckingham did the “Holiday Road” theme song…rockumentary on The Doobie Brothers, and another on Brian Wilson).

Appetite, though. That is the worst, as not eating also affects energy levels/fatigue. I’m not nauseous, but food is unappealing when I look at it, tasteless (mostly) when I eat it, and I quickly fill up…long before the plate is empty. I can feel my appetite slowly recovering (the week 1 combo is really what drags down my appetite), but not enough to keep my weight up. As you can see from the graph, the last two weeks my weight has fallen off the cliff. Overall, about 10 lbs lost, but 5 of that has been in the past week or two.

So, I am trying to pick higher calorie (even if it also means higher sugar) options. Instead of black iced coffee in the morning, grabbing a latte. Most sweets and coffee still taste OK (but potatoes taste like sawdust, as do many other foods). I was eating oatmeal for breakfast, but it tastes so bad, now, I’ve switched to yogurt. Lunch I’m trying out a variety of soups (Udon noodle is best, but Phó is also pretty good). Dinner is the toss-up. Sometimes just a smoothie (homemade from freeze-dried then powderized banana, strawberry, kale, and broccoli). Sometimes I can manage 1/2 of an entree like lasagna or other pasta.

Even typing the above makes me feel like I want to have nothing to do with food. Ugh. I’m not even going to re-read it for typo’s and grammar tweaks.

Anyway, I really don’t feel bad. Just get tired early and often. I’m able to mostly keep up at work. My guitar practicing has suffered. The couch looks so much better than my practice area. And, keeping up this blog has suffered, as well. But, I can tell that next week will be better. I’ve already warned my office that the week of the 30th will likely be my worst week (the beginning of my last round).

So, back to editing videos from the Nashville trip. Or, maybe a nap. Well, definitely a nap.