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.