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).

Throat Blog — Taking a Deep Breath

So, a couple of weeks ago I had a CT scan that showed my throat was clear but there was a nodule in my lung. Fast forward to this week. Had a PET scan on Monday. The radiologist would only say that my throat was clear but that there were multiple nodules in both lungs. But, no count of how many, no indication of how big. So, all I could do was go home with that meager information and wait for today’s follow up appointment with my medical oncologist. Oh, and Google, of course.

Well, all Googling did was raise not my spirits but rather my blood pressure. Everything I managed to hit on looked dire. I finally swore off of Googling (mostly). Was doing me no good. And, in fact, at my appointment, today, I found out that the news is not dire. Metastasis, but very early and nodules are very small…the largest are smaller than a pea. We discussed treatment options including looking at available trials. For the one trial that I might have matched up to I needed bigger tumors. I am completely OK that I don’t qualify.

Instead, next week (insurance permitting), I’ll start on a three-drug combo. One of the drugs will require me to have a port (medical, not USB–but wouldn’t that be cool) put into my chest so that it can be delivered over a 4-day period every 3 weeks The other drugs will go in in a weekly infusion.

Possible side effects are fatigue and rash. I can already say that I can think of at least one activity that tires me out and puts me at risk of getting a rash that I’d rather be doing…but I don’t get to pick, so will just have to go with chemotherapy.

No restriction on what I can do, other than whatever fatigue might limit me to.

So, one day next week I’ll go in and have the port put in (a 4-hour process under mild sedation), and will hopefully start treatment on Friday.

Knowing that this is not dire (serious, certainly, but no reason to start planning my going away party) has me breathing much easier.

Throat Blog — Clearing my Throat

Got my quarterly CT scan and follow up with the radiation oncologist, this week. Going in, I had a list of things to discuss. Here is the list with the results:

  • When I look down, the back of my thighs go numb
    • Pretty normal. Happens in about 30% of people who get radiation like I did. It will go away.
  • Status of Lymphedema
    • Lymphedema is gone. I have some mass of something in the front of my neck. He said it appears to be the remains of the tumor and disorganized cartilage.
  • Voice Restoration
    • No way. That “disorganized cartilage” I mentioned above is basically the front of my larynx, where the vocal chords normally anchor. There is nothing to anchor to…so I’m stuck with “throat talking.” No more singing in the shower. But, my facility in throat talking should improve somewhat, over time (a result of practice, not healing).
  • Coughing up bone
    • I had coughed up a sliver of something that appeared to be bone, twice. The second time I was able to save the chip. He looked at it and took some pics with his phone. Hmmm. Thinks it is probably just some calcified cartilage that was floating around. Nothing to worry about. My photo is attached. Actual size about 1/3″ long.
  • CT Results
    • The scan was just a soft-tissue scan of my neck (included from eyeballs to a little ways into the top of my lungs). My throat, although functionally scrambled, looks completely disease free. Yay! But, he was able to see something at the top of my lungs that he wants to follow up on with a PET scan. Not enough detail in the CT (nor was it intended to be a lung scan), so no diagnosis. Just some concern that there could be something going on. PET scheduled for ASAP…which ends up being 2 weeks from now, with a follow up with my medical oncologist a couple of days later. Hoped for a much sooner scan…hanging in limbo sucks.

So, a mix of news. Hate that my voice is gone, gone, gone. Glad that my throat is cancer-free. Concerned that there could be something going on in my lungs. Glad that if there is something going on, we’ve caught it early (my 1/31 PET scan showed my lungs as completely clear).

Here is a sidebar on how the brain works. We know that memory is imperfect. It is not a DVR, recording everything in perfect detail. Instead, we remember what we think we experienced, sometimes what we hoped we experienced, and sometimes things we never experienced. So, where am I going with this? When I recall a conversation I had yesterday, in my memory I “hear” my normal, pre-disease voice. Not the hoarse whisper that I really speak in. Pretty strange.

That’s all the news that fits, for now. Will hopefully be a quiet couple of weeks up to the PET scan.

Throat Blog — No News is No News

I’ve been pretty lazy as far as the blog goes, lately. No posts for a long time…which means that nothing of note has really happened (throat related, anyway). I did get the stomach tube removed. Unremarkable…the doctor deflated the balloon then yanked it out, slapped a gauze on it, taped it down, and said not to eat for a few hours. That was basically it. I’ve got another ugly scar on my stomach, but I’ve started collecting them, so that is OK. I should think about getting a tatoo to theme them all together. Where the tube is could make a pretty decent eye without much ink. Not sure about the footlong vertical scar through my belly button, though.

All my vitals have been normal. The only bad thing that has happened has been a case of food poisoning from eating out last Thursday that I am still recovering from. Other than the 20 hours of agony from the clot in my small intestine, I’ve not felt this bad in years. Certainly the chemo/radiation never had me feeling this bad (tired, run down, but not nauseous). Couldn’t eat on Friday. Eating, now, but very carefully. Trying to stay hydrated as the badness works itself all the way through my digestive tract. It has lodged somewhere south of the navel and sounds like two squirrels arguing with a gorilla.

Anyway, next up will be a CT scan on May Day. Hoping I can stay lazy.

Throat Blog — What to Expect after Trach Tube Comes Out

Ok, I believe I've finally had an experience that is "typical." My cancer treatment was atypical for several reasons, but mostly because one week in, I got the blood clot in my small intestine. This caused me to miss one chemo and have to double-up some days on radiation to make up for missed doses while I was down. So, not sure how much of what happened to me would necessarily translate into what would happen to someone else. Certainly, some things would be similar, but … I dunno.

However, post-decannulation (removal of the tracheostomy tube) seems to be progressing as normally as you could expect for such an abnormal condition.

Before the tube was removed, if I blocked the tube (which I was routinely doing in the weeks leading up to removal), breathing became more difficult. Not bad if I was sitting, driving, or doing nothing much. But, if I took the stairs or did much of anything that would increase my oxygen load, I had to unblock for a few minutes so that I could breath fast/deep enough to get enough air.

So, despite desperately wanting the damn thing out of my neck, it was with some trepidation I approached the removal itself. A team of doctors (this is a teaching hospital, so nearly every doctor's visit included a few doctors or doctors-in-training) came in at around 6:30AM. Removal was a complicated process that consisted of…releasing the Velcro holding the strap around my neck and pulling the tube out. They then quickly pressed a medicated dressing and then taped a gauze pad over the hole in my neck.

The first thing I noticed was that I was able to breath with absolute no restriction in my airway. My slight fear that without the tube in breathing would be laborious completely dissipated. Breathing was great.

Then, one of the doctors said "When you talk or cough, press your finger here" and proceed to poke me way to hard directly in the stoma. Ouch! The area was not especially tender, but, man, he pressed in a bit aggressively. Twice. I actually batted his hand away (sorry about that) and rasped "Dude!" (sorry about that, too). They all watched me breath for a minute, then booked it out of the room. I must have had a look on my face, or something.

Ok, so as I said breathing was great. Let me modify that. Breathing was great if I was breathing from my mouth. If I breathed through my nose, there was enough back pressure that a lot of air went in/out of the stoma. I really thought that the stoma should be sealed off better, so that afternoon, I had the nurse re-dress the hole. She used basically the same method as the doctors, but used a lot more tape to hold things down and somewhat seal things better.

I left the hospital the same day that the tube was removed. The only instructions I got were "Be sure to block the hole with your finger when you talk, cough, or laugh, until it heals…which will take a week or two." I also got a bunch of information on stopping smoking (I've never smoked) and similar irrelevant advice, as well as things to watch for that might require a trip to the ER. A bunch of pages of stuff, and I foolishly assumed that taking care of the stoma itself would be covered. The entirety of that part was:

  • Keep trach site covered with occlusive dressing.
  • Apply pressure to the dressing when speaking or coughing to avoid air escaping from the hole
>

So, I supplemented with Dr. Google. Found a credible source (MD Anderson). Fold a 4×4 gauze twice and tape over the stoma. Then, cover with a waterproof wound dressing. Change daily.

Ok, this worked much better. If I was lax in covering the hole in my neck when I talked (or if a cough snuck up on me), air would inflate the dressing a bit, then the air would go back into my neck to deflate. This was the case for about a week. Then, my neck became a one-way valve. When I coughed or talked without fully sealing my neck with my finger, the air would inflate the dressing. But, I'd have to press down on the dressing to "burp" the air out around the edge…the air would no longer go back into my neck. Around Day 10, my trachea was healed enough that no air came out at all. I replaced the gauze and wound dressing with a smaller (about 2 x 3) clear waterproof bandage and no gauze.

For my next adventure…my PEG (stomach feeding tube) comes out on Wednesday. It has been hanging unused from my stomach for over 6 weeks now. Meanwhile a crust has to be cleaned away every day from around the exit wound. So far, my only instructions are to be there at 9:30 AM Wednesday and to stop taking my baby aspirin until after the procedure. I might have a few more questions before I leave after this procedure, if the printed followup instructions are as skimpy as they were for the trach tube.