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.”
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
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.
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.
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.