Sunday, October 21, 2012

October 21 - I took my last dose of pain medicine at 4:00 am this morning. Not good. I didn't realize I was so close to running out. I think it's because Dr. A only prescribed 300 ml whereas nurse Anne has been prescribing 500ml. Today and tomorrow are probably not going to be all that much fun. Hopefully the Advil does a better job than its been doing.

Had my appointment with PA Erin on Friday. Actually, I initially met with some other PA. Nothing makes you feel as special as having a doctor walk in and ask you when your radiation treatments start. If you can't take the time to read my file before I get there then I didn't have time to stop at the bank for your $40 co-pay. Jerks.

Anyway, she was talking about doing a scope and I told her that was fine as long as they handed me a garbage can ahead of time because I was pretty sure I would be throwing up. (Side note: Thursday night I managed to eat about 1/3 c. of tomato basil soup at Applebee's. I was then up all night gagging because my tongue touching the back of my throat was much worse than usual.) She decided not to do the scope.

She asked me when my next appointment with Dr. V (plastic surgeon) was. I told her I had graduated from him and wouldn't be seeing him again. She looked at the scars on my neck and exclaimed that they looked great. I told her Dr. V didn't agree and pointed out the two inch spot where the skin got sucked under when my neck got infected twice. I told her Dr. V told me to come back and see him in 6 months and he could do some cleanup. She claims you have to look really close to even see what I'm talking about. I'm going to have to ask the peeps at work. I notice it as soon as I look in the mirror. I will take a poll and get a majority ruling.

I told her that Dr. C had said most of the swelling would go down in 3 months and it's been 3.5 months. She confirmed that the radiation exacerbates things and that the swelling would continue to go down now. I asked if I would ever speak normally again and she said that I will see some improvement as the swelling continues to go down but I'm not likely to ever speak normally again. That was a bummer to hear. :-(

Then she started feeling up my neck, my face, my shoulders, etc. Like a breast exam except higher up. She asked if I had been doing this at home as well. I told her that nobody had told me I should and I really didn't like anyone touching the incision sites, including myself.  She said it wasn't necessary, some people just like to continuously check what's going on. Yeah, no thanks. So there was one spot on the right side that she kept pressing and asking if it hurt. It didn't. She then left and got PA Erin.

PA Erin started feeling me up in the same spot at which point I got a little worried. I think PA Erin felt me tensing up because she stopped pressing, patted me on the shoulder, and told me it was nothing. Then she told the other PA that because my neck is so skinny, every little bump can be felt, and there was nothing to worry about.

Speaking of skinny, I haven't quite stopped the weight loss but I've slowed it way down. I weighed myself on 10/11 and I weighed 142.0. This morning I weighed in at 140.8. Just a little over 1 pound in a week and a half is not bad. I've been avoiding the scale lately because I'm tired of seeing it go down. I feel like I'm trapped in Stephen King's novel "Thinner". Creepy stuff.

PA Erin asked me what was going on with food intake. I told her I drink a ton of water and (3) Ensure's a day. She got really excited and told me I'm doing fantastic! She said normally at this point, people aren't eating anything whatsoever. I'm going to take her excitement with a grain of salt. Dr. A, the head radiation chick, was not nearly as excited and wants me to try and bump up to (4) Ensure's a day so it can't be THAT uncommon.

Side note: I had told Dr. A about my craving for a root beer and how badly it hurt when I tried to drink one. She said it wasn't actually the soda that hurt but the fizzy. She told me to let it go flat and try again. She was right but flat root beer tastes terrible. Flat Sprite on the other hand is pretty darned good. I can actually taste a little bit of the lemon-lime flavor. I'm drinking my third one this weekend right now as I type. :-)

PA Erin also looked at my arm scar and asked if I was using anything on it. I told her I had been using Mederma but hadn't used it in a couple of weeks now. She said Mederma is good (and gave me a couple of coupons) but something called ScarFade works as well and it's cheaper (she gave me a free sample). Sammy was right and the improvements that I thought I was imagining may have been real!!

All in all it was kind of a lame appointment. They want me back in 3 months so they can do a scope and see what's going on.


Improvements:
- Once in the past week I actually slept for a solid 7 hours!
- Throat is still painful but I'm removing the word extremely.
- I'm removing the word everything and putting in most things for the 'tastes disgusting' as I sit here sipping my Sprite. :-)

No Improvements:
- Swallowing is painful
- I'm mostly only able to sleep for 3-4 hours at a time.
- Most things still tastes disgusting.
- Mucusitis on the good side of my tongue.
- My tongue is still swollen and touching the back of my throat, making me gag.
- Diarrhea is still going on.
- I'm still losing weight a little bit of weight
 - I'm still using the water pik 4 to 5 times a day to blow the ropey saliva and mucus build-up out of my mouth.
- I'm still not producing spit.
- And even if my coworkers say I'm sounding better every day, I still sound garbled to my own ears.

Other than that, I've been trying to fill my calendar with fun plans to take my mind off of how slow the healing is progressing. This coming weekend is shopping at Waterloo with Sammy, the weekend after is the Blue Man Group with Patty and Terri, a couple of weekends after that I'm in Liverpool for a day of board games with Sandi, and the weekend after Thanksgiving I'll be at a cabin on the lake with Kit learning how to knit a scarf. Good stuff!

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