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.

Throat Blog — No More Neck Snot

Ok, the ENT team came in at 6:30 AM and pulled the tube out of my neck, covered it with dressing, and left me breathing from my mouth. All the backpressure is gone with the tube out (as long as I don't cough or try to talk). The first dressing was too loose…regular breaths were still going in/out of the hole. I think it was because my neck was not cleaned before the first dressing was put on, so it didn't stick very well. So, floor nurse helped to re-dress it and we sealed it better. I do need to hold it tight with my hand when I talk or cough, but all my normal breathing is now going in and out of my mouth and nose.

And, my need to cough almost immediately went away, too. Something about installing a foreign object in your throat must irritate things. Of course, when I needed that to have an airway, it was worth putting up with. But, glad that part is over.

I am now released from the hospital (just waiting for my ride to get here). Still have the tube in my stomach…it takes a release from several specialists (nutritionist, speech/swallow therapist, maybe others) and then the controlling doctor. I haven't figured out who the controlling doctor is, yet. I have so many it is difficult to know, sometimes, who to ask what. But, I can probably get this out of the way in the next week or so. It doesn't really affect my day-to-day, but is a bit of an annoyance I could do without.

Ok, back to the salt mines, tomorrow. Actually got quite a bit of work done this morning. But, with all the night-time interruptions the hospital provides for free, plus the early wake-up call by the ENTs, I suspect I'm going to be ready for a bit of a nap by the time I make it back to my house. Or maybe a snack, first (lunch at the hospital was an uninspired burger that was just a patty on buns…most of the food here is quite good but the burger wasn't so delicious).

Throat Blog — Woah, we’re half way there

Ok, the doctor went in with the intention of cutting out some suspect tissue for biopsy, and to evaluate for trach tube removal. But, when he scoped me, he couldn't find any suspect tissue. So, not nearly as sore as I had anticipated (just a contusion under my tongue from where my mouth was wedged open). I did wake up with the trach tube still in place…but the plan is to keep it fully plugged overnight and make sure my O2 stays good, then take it out tomorrow morning and monitor me for a few hours before sending me home.

So, stuck in a room for another 20 hours or so, but getting a few work tasks (and blog updates) done. I hear the dinner bell ringing…gotta go eat, now.

Throat Blog — Closing the Hole

Great news from my Surgical Oncologist appointment, today. The trach tube is coming out! On the one hand, this can't happen soon enough. On the other…I have an engineer coming from Tokyo next week and must be in the office to work with him. So, soon enough is delayed by a week. Since I'll need to stay in the hospital for at least 24 hours, it looks like this will get scheduled for the week of February 19.

While he's in there, he'll also be grabbing some tissue to biopsy. There are a couple of "hot spots" that showed up on the PET scan that are almost certainly just inflamed non-cancerous tissue areas, but a biopsy will provide complete certainty. Can't have too much certainty.

Looked at the pics from the PET scan, and can't believe how big the cystic areas are. Also difficult to believe that the tumor was actually much bigger than the cysts. Hoping that they go down in size over time…they do press on my vocal chords and trachea and are probably contributing to my not having any voice over a whisper. As of now, we are just going to see what time will achieve.

So, next up will be several spoonfuls of barium on Friday to see which way the food goes. I'm still 100% eating by mouth (with a little aspiration that doesn't get very far down the wrong way and is easily cough cleared). But, I'm about 95% liquid by tube. I'm hopeful that removing the trach tube will allow my throat to better mobilize and improve liquid swallowing so that I can get the stomach tube removed, too.

Looking forward to someday having only those tubes that I was born with.

Throat Blog — Sick Hair

I stopped shaving my head back last September. Grew a fairly long (for me) fringe. But, my hair is so fine, it tends to drift up and down with wind, static electricity, or improper thoughts. I suppose I could put some hair gel on it, but not fond of the greasy look (or feel). So, Tuesday I shaved it all off.

Between Tuesday morning and Wednesday morning that is all I did. But, since then people who have seen me frequently during treatments suddenly started telling me how much healthier I looked. At first I really couldn't figure out wh,y all of a sudden, I started getting that comment. And, it wasn't just one or two people. It was several people in different departments at UTSW, several people at my office…

Then I realized…hair makes me look sick. Not like badass "Dude, that is one sick set of wheels!" sick. More like "Maybe you should go lie down for a while" sick.

So, I'm back to a smooth, healthier-looking pate.

Throat Blog — Looking Good

Preliminary PET scan reading indicates the tumor is gone. It has morphed into a rather large cyst (but still smaller than the original tumor). No indication of any issues anywhere else (well, from neck to knees).

So, next oncological milestone will be meeting with my Oncological Surgeon next week. PET showed that my airway looked pretty good, today. However, I know that that changes (some days it is more blocked, some days less blocked). The trach tube itself causes some irritation that leads to coughing and mucus which results in swelling which irritates the trach tube…so perhaps pulling the trach tube would be safe. Or not. Definitely an item for discussion next week.

Still eating pretty much 100% by mouth. Still drinking pretty much 100% by stomach tube. Will start to move toward working at the office more…I have to be here (and I say here because I'm setting at my desk as I write this) next week to support the engineer who is coming in from Tokyo. Normally, I'd fly over there for a month or so, but not an option this dev cycle.

So, progress and good news. Time to get back to work.