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.

Throat/Guitar Blog — Trip to Nashville

Well, Saturday week ago I headed to Nashville for an annual event I’ve been going to for several years. Guitar Gathering brings a group of beginner to advanced to performance-ready guitar players together for 4 days of intense guitar experience. Days are filled with master classes in music theory, fingerstyle, blues, rock, and more. Then, evenings feature a concert given by some fantastic talent. Watch here and on my Youtube page, as I take plenty of videos of the main events and post them as I get them edited.

But, not getting too far ahead of my self, first I have to get to Nashville. I normally take 1 or 2 days. It is about 9 hours of driving, which under normal circumstances, would not be a problem. But, as I headed out I was connected to what I lovingly refer to as my “poison pump” which gives me continuous doses of Effudex for 4 days. Effudex tends to knock me down a bit. So, first leg was to Hot Springs. By the time I got there, I was really having to fight off falling asleep. Got a hotel, got unloaded, took a nap.

In Mansfield, there is a restaurant I go to 2 or 3 times a week: La Gondola. It is a jewel of an Italian restaurant, serving up incredible Italian food hidden cleverly in a strip center. It was started by Sal, who had previously partnered with Jamal to run the Italian Villa in Arlington. When they sold Italian Villa, Sal started La Gondola, but Jamal moved to Hot Springs and opened J&S Italian Villa, there. So, while I was in Hot Springs, I decided to check it out. Jamal’s son, Sean, now runs the restaurant…I sent him regards from Texas and sat down to Pollo Rolotini (aka “Roly Poly Chicken”). Chicken breast wrapped around Italian sausage. Yummy.

Back on the road, I made it to Memphis on Sunday. It was a pretty short drive, but enough for one day. I wandered up and down Beale street, had lunch at B. B. King’s, and bought a hat (it matched 3 of the shirts I’d brought on the trip).  Beale street is a hopping place on a Saturday night…Sunday noon, not so much. Still, some live music, some good barbecue, a nice stroll, then I was ready for the hotel.

Monday I made it into Nashville and got checked in. Actually stayed down in Mt. Juliet…hotels closer in get really expensive. Didn’t do much on Monday other than rest and recover from the drive. Tuesday I got up and noticed that the bag of Effudex looked really flat. It wasn’t due to actually stop running until a little after noon, but I was pretty sure it had pumped all it could. I ready for a while, at the same time watching a few little bubbles that were in the IV line. When the pump hummed, they’d move about a quarter inch toward me, then immediately return to where they were. After watching this for an hour, so I was very certain that there wasn’t actually any drug still pumping, I disconnected everything, unplugged the line from my chest, and headed out to the meet and greet.

The event is primarily held in the music building at Trevecca Nazarene University. Said hi to some previous attendees, met some newcomers. At about 4pm, things broke up and I headed back to the hotel, intending to take a short nap then go to dinner. Well, the short nap ended up going from 5pm to 4am. So much for dinner.

Wednesday through Saturday were filled with all things guitar. I’ll talk a bit about each event as I post the videos.

Saturday we met at Columbia Studio A. This is where Marty Robbins, Patsy Cline, Elvis Pressley, and more recorded hit after hit in the 50’s and 60’s. Actually much of it was recorded in a studio called the Quonset Hut (which, oddly enough, was built in a Quonset hut). Got a great tour of the facility, which is now part of the Belmont University campus. Then student showcase, where 16 of the folks here for the event got to play and, in some cases, sing in the studio where magic had happened. I’ll be posting those videos, later (but some may be private, at the request of the performer).

Drove an uneventful drive home. Took two days…and I felt good enough that I could have probably made it farther each day than I actually did. Stopped overnight in Lonoke Arkansas then finished the trip on Sunday.

So, now, here I sit connected to yet another poison pump (just for a couple of hours, today). Then, into the office. I completely disconnected from work email on Wednesday…too busy during the day and really ready to crash after each night’s concert. So, I expect there to be a pile of emails to handle (well, I peeked and I have 90 unread work emails), a gazillion forum posts to read, plus whatever my bosses put off for “until Paul gets back from vacation.”

Throat Blog — Round 2 Begins

Well, busy doctor week this week. First, I fired a doctor. He didn’t do anything wrong…its just that I don’t really need a cardiologist. He had checked me out to ensure that the clot I got in my small intestine last year didn’t start in my heart. It didn’t. So, I told him it was best if we parted ways. Seriously, we spent the entire visit talking about bicycling and guitars. Oh, and he confirmed no a-fib or other heart issue that needs constant followup. So, our breakup was amicable.

To keep the universe in balance, though, I’ve also taken on another doctor. During my visit with my ENT/Surgical Oncologist, I repeated a constant plea: Find a way to make my voice louder. As a reminder, the tumor in my neck last year destroyed the thyroid cartilage, which is what the front of your Adam’s Apple comprises. The vocal cords each have a tendon that connects to your thyroid cartilage, kind of like how guitar strings are anchored down by the bridge. In looking down my throat while I made pitiful mewling noises on command, he said that the side ligaments that are supposed to tighten and loosen my vocal cords to produce pitch and volume are working. But, since the “tensionors” aren’t in place, the vocal cords don’t come close enough together to vibrate properly.

Drawn in ascii, my vocal cords look like \ / instead of || when I try to talk. So, he’s sending me to a different ENT / Surgeon to have filler injected next to one of my vocal folds so that my vocal cords will be more like |/ all the time, pressing one cord over close to the other one. The hitch is that it will also mean that my airway will be half-closed all the time. So, will have to balance getting them close enough together without actually affecting my ability to breath.

Next up was a quick visit with my Medical Oncologist where we pondered 2B or not 2B. The cetuximab rash is graded on a 1-5 scale:

1: Less than 10% coverage over entire body.
2a: 10-30% coverage, but few or no pustules.
2b: 10-30% coverage, but mostly pustules.
3: 30-50% coverage w/pustules
4: >50% coverage typically with secondary infection
5: Death.

Each grade has its own treatment and I’m at 2b, which indicates either topical or oral antibiotics. Really want to stay away from 3 (3-week break from chemo) and definitely staying away from 5. So, started some antibiotics and either coincidentally (these rashes usually go away after about a month) or due to the antibiotics the rash immediately got better. No more itching in my head hear or back, so sleeping a lot better. Still looks bad, but feels so much better.

So, Friday I started Round 2: cetuximab and carboplatin infusions then fitted with the 4-day fluoruoricil pump and sent home. Well, actually I went to work. And, Saturday I headed out on my annual sojourn to Nashville for guitar, guitar, guitar. Expect my next few posts to be less health related and more guitar related. A relief for us all, I’m sure.


Throat Blog — Like a Teenager, again

So, I’m losing a bit of weight, but nothing alarming. I just can’t eat a full meal all at once. So, I set the rest aside or take it home to eat later. But, I’ve never really been one to hunt down food if I’m not actually hungry. So, while I could eat the rest, I never get around to it (well, in a day or two but not that day). So, down maybe 5 lbs. Going to work on keeping it to no more than 10 lbs (I’ve got a bit to spare).

Meanwhile, the side effects of the Cetuximab have hit with a vengance. I’ve broken out all across my chest, back, face, head, and arms. I’ve got some corticosteroid cream for the face and head, and they’ve actually gotten a bit better. But it still looks pretty bad. Fortunately most of it doesn’t itch. Only the area under my public hair (you know, the hair on my head) gives me any grief.

So, skinny and acne…just like when I was 16.

The other side effects (sore mouth, fearful flatulance) have subsided. They must be related to the other two drugs that I get only every 3 weeks. I’ll find out next week…Friday is the day I get all 3 meds, so those side effects should be kicking in somewhere around Memphis (I’m driving to Nashville starting out on Saturday). Maybe the weather will be cool and I can drive with the windows down.

Saturday my heart might have stopped. Not sure that it did, but I had a headache and took a pain pill, then fell asleep on the couch. I woke up and Rocky (the cat) was performing CPR. Up on my chest pumping left paw-right paw-left paw-right paw. Good thing he was there.

Throat Blog — Time for Side Effects

I made it through chemoradiation with no real side effects from the chemo. Never got nauseous, didn’t lose my hearing, no hair loss (except on my neck from the radiation). Well, this time around, more powerful chemo looks like I’m going to have the thrill of experiencing at least some of the more common side effects.

The queasiness of early last week did subside quickly. Not eating big meals, but able to eat throughout the week. But, around Wednesday I started getting a sore throat. The kind of sore throat you get from post-nasal drip (inflamed nasopharynx). This has gotten worse. Soft foods and warm or cold liquids are ok, as long as they are not acidic at all. Not eating as much as last weekend, but still eating.

Friday I went in for week 2 infusion. This is only a single chemo drug (Cetuximab). I again got lost in the system. Arrived at 8 AM and checked in for an 8:30 AM lab draw. At 9 AM I went to the front to ask why I hadn’t been called back, yet. Assured that I was 3rd in line. After 6 more people had been called, I checked again…this time I noticed that my lab draw appointment was still showing up on my hospital schedule…this usually disappears once I’ve checked in. Sure enough, my infusion (9:30 appt) was properly checked in, but my lab draw was not. I spent a little time with the nurse supervisor explaining how unacceptible this is.

Anyway, I did make it to the lab draw, just 45 minutes later than scheduled. When I bared my chest so that the nurse could plug into my mediport, she asked me how long I’d had the rash. Uh…rash? I hadn’t even noticed it that morning (but didn’t have my glasses on when I got out of the shower, so probably just missed it). Sure enough, my chest is speckled with red spots. No itching or pain, but the spots are getting darker and increasing in coverage.

And, on to the next on the list. My tongue. No actual sores (yet), but it feels as if I drank too-hot coffee yesterday. A little tingly and slightly sore. And, I mentioned before, my sense of taste is getting whacked. Not as bad as the worst of chemoradiation last year, but noticeable. Spicy tastes good (but hurts my throat). Need to find a happy medium sauce.

Finally, the one that makes everyone at work glad that I have my own office. Incredibly aromatic and frequent flatulence. The cat walked into the living room last night, hopped onto the couch next to me and started trying to bury me in the comforter. Dogs look at me and say “Dude…really?”. The government should look into this as a not-so-subtle form of biochemical warfare. This one wasn’t on any of the official lists of side effects but is well documented in internet forums.

This is 9 days into chemo, so I expect the above list to grow. I still have all my public hair (you know, the hair on my head, face, arms, etc.), but can expect what little is there to abandon ship in the next week or two. Oh, well. Saves on shaving cream.

Throat Blog — I’m Too Nice

Well, I’m not always too nice. If I have a headache or feel a bit queasy I know I can be a bit peevish. But, up to yesterday, I haven’t really felt off. I felt great, in fact, all weekend.

Yesterday morning, though, I woke up queasy. Not exactly nauseous, but not ready for anything more than a nibble of food. And, I had a slight headache that grew as the day wore on. I spent all morning with my car in the shop…sitting in an uncomfortable chair in the dealership’s cafe doing email and other work.

Then, I went in at 1:30pm to have the poison pump unplugged from my mediport. I had been warned on Friday that they were just squeezing me in and that I’d probably have to wait a bit, so I hunkered down in another uncomfortable chair in a crowded waiting area and checked email, tried to review some technical stuff I’ve been putting off, and nursing the growing headache.

The afternoon wore on. Knowing that I can be a bit peevish when I feel this way, I kept saying to myself, “Self…just be patient. They are obviously very busy. They will get to you in time.” Self settled a little deeper into the chair, mildly appeased.

Well, the afternoon continued to wear on and I continued to have longer and more heated “Self” chats until it was after 4:30pm and I was the only one left in the waiting area. Two people came out to check on me, got rather alarmed looks on their faces, and rushed away. Very quickly after that, a nurse took me back to have the pump unplugged. They had had a miscommunication and thought that I’d already been seen to hours before.

Actual removal just took a few minutes (and that was as they instructed me on how to do it myself, next time). Glad to have the pump off…and actually feel a little better, today. Still a mild headache and a slight sore throat, but I was able to eat fine last night and this morning.

I think that next time, though, I’ll let self have its way after only a chat or two.

Throat Blog — Getting Pumped

Thursday was mediport installation day. Was concerned about transportation, as my normal ride was unavailable, but the end solution was better than a ride, anyway. In addition to the 9AM start for the procedure, I then had a 7 AM appointment to start chemo on Friday. Getting to UTSW from my house by 7AM means I have to get up around 5AM (if I’m going to shower, eat, and drive the 45-60 minutes, wait for valet, etc). So, instead, I booked a room a the Holiday Inn Express within walking distance of the hospital and drove and parked there on Thursday. Then, walked over to the hospital for my procedure.

They had originally said that I would only be “twilighted” for the procedure (local anesthesia and lorazepam). But, since there were concerns about keeping my airway open and also keeping me still during the procedure, they opted to knock me all the way out (fentonyl and proprofol) for a bit. I remember being wheeled down the hall, generally prepped. Then, they started pushing the fentonyl just before moving me to the procedure table. Everything is a blank until I woke up on the way back to my room.

A co-worker came over to shuttle me back to my hotel (thanks, Norma!). Our office is only 15 minutes away. I felt perfectly fine. I don’t think I talked any more unusually than normal. Even worked from the hotel room for an hour or so before laying down around 3pm for a short nap. Well, short nap being about 3 hours…I woke up and immediately realized that the lidacaine they’d used as a local anesthetic had worn off. Felt like they had come just this close to breaking my right clavicle (collar bone). Oooh, hurt to move my right arm.

I popped out to eat (it had nearly 6 hours since sedation, and I wasn’t woozy, disoriented, dizzy, forgetful, incontinent, or anything else that would inhibit my ability to drive…and it was 2 miles there and back on local roads to the restaurant so not much risk exposure). Anyway, ate well, but when I got back to the room I resorted to my very rare use of narcotic pain relievers. Took 1/2 a Vicodin and an extended-release Tylenol and vegged out until about 10 pm then slept fitfully until my 6AM alarm.

Gave me time for breakfast, a quick shower, and the short drive to the UTSW clinic to start my infusions. Since this was the beginning of cycle 1 (I’ll have 4 three-week cycles) Friday was a little over 5 hours. Started with lab draws, then some saline drip, some steroids (which made me burn a little in some rather delicate areas), and some IV Benadryl (which was like being slammed with a warm fuzzy rock…I had a private room but suspect my snoring woke up my neighbors…it sure woke me up a couple of times). Then one hour of the first cancer med (Cetuximab), 2 hours of the 2nd cancer med (Carboplatin), and they hooked me up to the pump for my 4-day infusion of Fluorouricil.

I’ll need to go back on Tuesday to have the pump removed, then will go back the next two Fridays for labs and Cetuximab only.

So far (fingers crossed) no really bad side effects to report. The clavicle pain is already subsiding. However, my taste is already being affected. In fact, it started and progressed this morning in a way I was able to directly track. I came to Starbucks and got an oatmeal and skinny vanilla latte. Oatmeal was a little less sweet than normal. The latte started out OK, but by the time I finished it, it had lost nearly all its flavor. Meh. A little metallic taste, too. As I am a saporous eater (no, not eating in my sleep…I eat more if it tastes good, otherwise have trouble forcing down bland food…not quite a hedonic eater, as I do stop eating when I feel full), I’ll have to find ways to motivate to keep enough calories going in. I’ve made it back up to 167 lbs, which is right in the range I’d like to keep it at. Won’t get too worried unless I start to drop below 160.

Hoping that work isn’t very affected. Big product launch starting, now. And a few other big projects in the works. Much of this I can do from my laptop, so if I have to miss days in the office, I can keep up with a lot from home. If there are any Summer colds going around the office, I’ve already given notice that they should not expect to see me until they burn out. That is the main reason I didn’t go into the office most of January…bad flu season, small company, so people come in sick to keep things running…but making co-workers sick who then come back in sick to keep the cycle going. I completely avoided the flu.

So, that is where things stand, for now. Hoping that my next post is not about explosive diarrhea or extreme acne (two of the most likely side effects, along with fatigue, which I can handle…always up for a nap).