Tuesday, October 30, 2012

October 30 - I ate a yogurt! Yes, an entire 6 oz container of key lime flavored yogurt. Just now. Yep, me. I'm very proud. Can you tell?

It tasted like crud and by the end, my tongue was starting to hurt from the swallowing motion, but I muscled my way through. I'm really relieved that I finally ate something substantial! I've tried soup, grits, mac and cheese, cheesy rice, mashed potatoes and gravy. Nothing seems to want to go down. I get nauseous just smelling half those foods. So, at least I have a positive report on my homework the next time I see Dr. A. And I can start supplementing the Carnation drinks with yogurts throughout the day. Woo hoo!

I MEANT to try out the juicer on Sunday but after 7 straight hours of shopping with Sam on Saturday....yeah, Sunday found me in bed all day long. I have a juice bible arriving from Amazon tomorrow though so juicing is definitely coming up within the next few days. It too will be a great supplement to my diet!

That's it for now. Just a quickie. But really wanted to announce the yogurt consumption. :-)

Friday, October 26, 2012

October 26 - TGIF! And be warned I've been Chatty Cathy all day today so go get yourself a snack and a drink before you sit down to read this.

I was looking at my Roxicet bottle yesterday (Thursday) and it occurred to me that based on what was in there, I was going to run out this weekend. Again. Um, yeah, over my dead body! Called the doctor's office and told them I was going to need a refill. They said they would have a nurse call me back as soon as one was available. An hour later Nurse Darlene called and told me that I had already picked up my prescription on Monday and that I was all set. I told her no, I was not all set, that I didn't have enough for the weekend. She suddenly starts copping just a dash of 'tude:

"You used all of it already??"
"No, I still have 100 ml left but if I'm taking between 40-60 ml a day, it's not enough to get through the weekend."
"But you just got a refill on Monday so you should be okay."
"The refill was only for 300 ml so I'm not okay." 
"Well, I'm going to have to talk to the doctor about this 'situation' and get back to you."
"Okeydoke, you do that."

Really? She thinks I'm 'scoring' my next batch of Roxicet to sell on the streets this weekend? Whatever. She called back an hour later and very politely told me my prescription was ready for me to pick up and they had increased it back up to the 500 ml instead of the 300 ml I received the last two times.Thank you. But the fun continues. When I went to pick it up, she personally came out to hand it to me and then started babbling about an alert. Something to the effect of the thrush medication and the Roxicet reacting with each other. Okay, so what should I be on the lookout for? Honestly, it wasn't really clear. I've never heard anyone communicate quite that badly. At one point she mentioned that she was concerned that I was going to be alone and that I would fall asleep and be unwakeable. Is that even a word?? Unwakeable? And what the hell does that mean? By mixing these two medicines I'm going to fall into a coma? She finally wound down and told me that she was going to call Wegman's and have the pharmacist talk to me about it. Thank God because she was making no sense whatsoever. Long story short, as my friend JBB always says, the side effects are increased drowsiness and possibly spacing out. The pharmacist said that if any of my coworkers/friends tell me I'm acting weird or out of it, I should call my doc. That's fine. Meanwhile, I was on both of these medications at the same time 9 or 10 weeks ago when I got the thrush the first time and I didn't notice any ill effects so I'm not worried about it this time around.

I've decided that I need to post more pictures in my blog. Some of my readers see me on a daily basis so they can see how I'm doing. And some of my readers are FB friends so they get to see some pictures on there from time to time. But some of my readers don't fall into either category and are totally missing out on stuff. Plus, pictures simply make things more fun! So, I was telling you that the nurse at the biometric screening said my arm looked great and I think the Mederma actually works. Here's a pic so you can judge for yourself.

So, Dr. A told me that if I'm down another 7 pounds when I go back to see her in 5 weeks that I will then be "too skinny". And the word bubble that magically appeared above her head said that she would be very unhappy with me. All she needed was a rolled up newspaper to shake at me and the picture would have been complete. I understand that losing a lot of weight while my body is trying to heal itself is a bad thing. I'm honestly trying to give my body the nutrients/sustenance/fuel/etc. it needs while balancing my pain/comfort levels. But she didn't say anything along that line of thinking. Her comment, very specifically, was that I would be too skinny. And being the contrary brat that I am, I went Googling.

First of all, my BMI is currently 24.1 and 25 is when you are considered overweight so I am still on the high end of the normal weight spectrum. I also looked up numerous different height and weight charts, frame sizes, etc. Medical sources say I should weigh between 111-146, insurance sites say I should weigh between 127-141, everyone seems to have these really broad ranges and I wanted a smaller target to shoot at. After collecting a bunch of data, I've decided that weighing between 125-135 is probably the healthiest weight for me. So, if I lose another 7 pounds over the next 5 weeks I will then weigh 133 which is within this range I am giving myself (BMI = 22.8) and it is NOT too skinny. Of course I am going to try not to lose any more weight. The point is, if it happens, I won't be getting gray hair thinking that I'm suddenly underweight based on Dr. A's comment.

Okay, let's break for fun stuff. Kit and I went to Nightmare Manor last night. What a blast! She was the brave one and led the way. There may have been some hand clasping and clutching each other in a few areas as well as turning tail and running in a few other areas but mostly we were a couple of independent, kick ass women, taking a haunted house by storm! ;-)

Today I got back the results from the biometric screening. There are 8 different things they look at ranging from blood pressure, to glucose, to cholesterol. Last year everything on it was green except my BMI due to my weight. This year, everything is green except my triglycerides. The report says anything under 150 is good and mine are at 159. The report doesn't really tell you what could be causing them to be high or how to reduce them. All it says is "...there are times when you are at greater risk for experiencing a cardiovascular event...". Something to ask Dr. Pebble about when I see her in the spring.

When I got to work this morning there was a large box sitting on my desk with a note from Messner, one of our Engineers. It said "Cathy, I just bought this but I'm headed to Japan. I thought you might want to test it out for me and let me know what you think.". I opened the box and it's a juicer! Oh the fun I will have! That's my big plan for Sunday. I'm going to Google juicing recipes and pick out 2-3 faves, pop over to the store for ingredients, and then juice away! I actually have a juicer picked out on Amazon but I haven't purchased it yet. If I like his, I might go ahead and bite the bullet because juice is definitely something I can ingest. Speaking of which.....

I decided I had better get a little more serious about the eating homework Dr. A gave me. Especially since I only have the weekends to do it. When I tried eating soup last Thursday, I was up gagging all that night because it caused my tongue to swell. Dr. A said that was normal and it would continue to happen because my swallowing muscles are all weak and wussy from so little use for months on end. So, I will be attempting to eat on the weekends, when being up all night gagging isn't going to make me late-for or useless-at work. Tonight I made Creamy Chicken Rice. Meh. I think I managed to eat one, possibly two spoonfuls. I then made a packet of grits with butter. Ooh! This has possibilities! I bought the instant grits in the single serve packets. They were lumpy and clumpy and kind of gooey. I'm going to buy a container of real grits that you cook on top of the stove and see if they're smoother. If yes, then this is definitely something I could eat. I managed 4 full spoonfuls of this. I also bought a box of Farina because Dr. A said that it's smoother and creamier than grits. It's on the test panel for tomorrow. I had told Dr. A that finding food to test is a little tricky because I can't taste 'sweet' at all. So, when I try to eat something sweet like applesauce, ice cream, yogurt......it's disgusting. So she and I sat there for a good 5 minutes wracking our brains, trying to think of liquid/soft foods that don't lean towards sweet, definitely not an easy task.

Okay, we're going to end on a fun note too. Kunkel is cleaning out her closets again. This always bodes well for me since I happily accept all hand-me-downs and this woman has an eye for style like you wouldn't believe! (I think the only reason I own anything classy is because she gave it to me!) Today, I was the recipient of 4 dresses. I found the dress choices interesting and am wondering if there is a hidden meaning behind them. Below are pics that I have placed in 'wearing' order. Observe and see if you're getting the same hidden meaning as I did.......

You get up in the morning and stretch. Grab the closest, comfy, casual article of clothing within reach and pull it over your head. You then wander out barefoot to your balcony where coffee and croissants await you:
After breakfast you decide it's a beautiful day for the beach. You shimmy into your bikini and pull on a light and fun sundress as a coverup for the walk down the gangplank:
Frolicking in the surf and lounging in the sun all day can really make a gal thirsty. And oh look, it's happy hour. Time to get back on board, freshen up, and find a cocktail:
Ah, it's elegant night. The one night that formal attire is requested for the dining room. I believe I packed just the thing:

Well? Is it just me? I swear those dresses are screaming for me to book a cruise! White sand, magic shows, sunbathing, slot machines, quiet corners with a book, hip hop dancing in the club, cocktail specials every day, swimming with the stingrays, movies and popcorn on the deck, zip-lining...........I'm off to bed. I will be dreaming of blue, blue water tonight..........

Wednesday, October 24, 2012

October 24 - Woke up today and my tongue was swollen to twice its normal size. Spent half the day trying to figure out what could have caused it. I didn't eat or drink anything out of the ordinary. I used Colgate Total at lunch yesterday to brush my teeth when I usually use Colgate Original but if I was going to have a reaction, you would think it would happen much sooner than 16+ hours later. Luckily, I had a checkup appt. scheduled with Dr. A this afternoon. Unluckily, it turns out I have thrush again which is what caused the swelling. Sigh.

So I'm back on thrush medicine. Happily she went straight to the good stuff this time and she doubled the dose so that it will hopefully work faster in a shorter period of time. On top of that, she showed me in the mirror exactly what the thrush looks like and put some refills on the prescription. She said if I see it come back yet again after we clean up this current round, to just go ahead, call in the refill, and self medicate. She also said that I should replace my toothbrush, otherwise I'm just inviting the thrush back in. Would have been nice if my cute little Indian doc had mentioned this the first time I had thrush although I guess it should have occurred to me. Alas, I freely admit that I'm not the brightest crayon in the box. :-)

I totally forgot to put heavy stuff in my pockets today. I was wearing a windbreaker instead of my leather jacket and lighter shoes too. Needless to say, I received a stern talking to about my weight. Supposedly I've lost 7 pounds in the past 2 weeks. I know this isn't true. As previously mentioned I've lost 2 pounds at the most. Whatever. My next appointment is 5 weeks away. Hopefully by then I'll be eating some real food like mashed potatoes and gravy or soup, and the weight loss will no longer be a bone of contention.

We had voluntary biometric screenings at work yesterday (if you get screened, you get a discount on your insurance!). I pulled up my sleeve so the nurse could take my blood pressure. I saw her eyeballing my scar and I think there was a brief internal struggle as to whether she should ask me about it or not. She finally did and I told her. She asked how long ago the surgery was and I told her July. She was really surprised! She said the scar looks fantastic for a surgery that recent. She really thought it was much older than that. Score another thumb's up for Mederma. That stuff rocks!

And let's end today's blog with an observation on hugs. Yes, hugs. Due to my adventure, there has been a lot of hugging going on in my life. Three coworkers in particular hug me on a weekly if not daily basis. I feel that all of this hugging is turning me into somewhat of a connoisseur and I wanted to give out some props where props are due. I was feeling a bit blue last week so I headed back to the Operations office where my buddy H sits. He is one of the coworkers that freely gives me hugs all week long. Unfortunately, he wasn't there. Neither was Tim, who is good for an occasional hug. The only employee back there was Al who does not give off vibes conducive to hugging. I said to hell with it and told him I was in dire need of a hug. Can I tell you, it was one of the best hugs I've ever received?? I had no idea there was an art to hugging but whatever it is, Al's got it. Mind you, I still love all the other hugs I get, they're GREAT hugs. I'm just saying the Al hug I received was AWESOME. And with that, I bid you adieu.

Monday, October 22, 2012

October 21 - The Advil didn't do squat. I was in a living hell from 8:00 am Sunday until noon today. I will be keeping a much closer eye on the level of my pain meds from here on out. I guess it's kind of nice to know exactly how much they're helping me although I was a little surprised to find out that they're helping A LOT. You'd think the pain would be starting to tone down by now. Not so much. Have you ever accidentally touched a hot burner on the stove? That's what the entire left side of my tongue feels like with no pain meds in my system. GAH! And the gagging thing was 100x worse than usual. I was up every 45 minutes to an hour last night. Made for a very long night and a very tired and unhappy camper today. Probably heading to bed soon.

On a happy note, I came home to find a package on my porch. My Mom sent me SIX boxes of Carnation instant breakfast packets! Thanks Mom! It made me realize that the reminder e-mail I had sent myself at work never arrived. It must have gotten caught in our spam filter so I had once again forgotten all about buying these. I now have sustenance for the next 3-4 weeks and it's good to know what these things look like so that it will be easier to find them in the store when I need more. Good stuff!

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.

- 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!

Tuesday, October 16, 2012

October 16 - Today marks 3 weeks since radiation ended and exactly 4 months without a cigarette.

I'm so glad I go back and read my last blog before posting a new one. I totally forgot about looking for the Carnation Instant Breakfast! I am sending a reminder e-mail to work right now so that I can pop over to the other Wegman's tomorrow and continue my search.

I spoke too soon about holding off on the Lidocaine shenanigans. In fact I think it was that very night that I was hurting so I mixed it with the liquid antacid and held it in my mouth for 5 minutes. Holy cow! She was right! Totally numbed everything. Granted it only lasted 30 minutes but it was a blissful 30 minutes.

Some days the liquid Advil works and other days it does not. Yesterday it got me through the day no problem. Today I was falling apart at 2:00 which was only 2.5 hours after my last dose of Advil. I ended up coming home and taking the Roxicet in the middle of the day. The reason being I had promised to take our new Korean Service Engineer shopping at the mall directly after work and that wasn't going to happen if I didn't do something about the pain ASAP.

Today was employee appreciation day at work. All of the managers made breakfast for us lower ladder people. There was french toast, scrambled eggs, omelets, bacon, sausage, min-muffins and cinnamon buns, fruit salad, juice.......<sigh> It all looked and smelled wonderful. It wasn't a total loss for me though, at the end of the breakfast they gave everyone a company jacket. It's REALLY nice!

I actually have one improvement to report although I don't know if it's because things are getting better or if sheer exhaustion is overwhelming me:

- Twice in the past week I actually slept for a solid 6 hours!

No Improvements:
- Throat is still extremely painful
- I'm mostly only able to sleep for 3-4 hours at a time.
- Everything 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.
- 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.

That's it for now. I have to start thinking of questions for the ENT appointment on Friday.

Thursday, October 11, 2012

October 11 - Yeah, so can't say there were any big improvements when I woke up this morning. Thought I should let you know. ;-P

Lots of stuff to report today:

Weighed in at the doctor's (Kunkel would be proud, I kept my heavy clogs and leather jacket on) and according to Dr. A, I'm doing really well at keeping the weight loss under control. I'm only down 6 pounds since the last time I was weighed 2 1/2 weeks ago which she said is great. I felt like I should get a gold star or something but nothing was forthcoming.

Ensure DOES give me all that I need from a nutritional standpoint but only if I drink 4 of them a day. If I can't manage 4 a day due to my marble sized stomach, then I should be doing a Flintstones chewable every day. So, I picked up a bottle of those this afternoon. Also, she told me that Carnation Instant Breakfast made with whole milk is just as good as Ensure and much cheaper. This was good news because Ensure is $10 for a 6-pack! That just seems crazy to me! I looked for the Carnation stuff at Irondequoit Wegman's but couldn't find it. I'm going to check East Ave Wegman's tomorrow. Hope I find it!

She said that even once the peeling on my neck is done that I should continue to use the Aquaphor and she wants me to start doing passive stretching exercises. I guess the neck skin can get so stiff that turning your head becomes difficult and painful. If I start stretching now on a daily basis, I can avoid that. She also commented on my tan, so I guess I'm not imagining that. :-)

We talked about my bullfrog thing again. Since I lost so much weight it isn't quite as noticeable as it was. She said that it's going to get worse. She also said that I'll notice it constantly changing based on how much salt I eat, how much exercise I'm getting, etc. Oh goody.

She looked at my tongue. I asked her why the good side has a thick white skin coating it. She said it's called mucusitis. Radiation burnt the heck out of my tongue so a skin formed to protect it. She said it would eventually go away (~3-4 months) and underneath there will be brand new tongue skin.

I told her that I thought I had done well with everything up until the last week of radiation and then things went downhill fast. Yesterday I took the Roxicet before I went to work (because I needed it!) and then I was all spacey during the machine sale meeting that I run every week. Not good! So today I didn't take any Roxicet but I was in a lot of pain when I was talking to her at 2:45 and I came home after the appointment, dosed up and am heading to bed soon. She told me to pick up some liquid Advil. She thinks that will help me get through the day and then I can pull out the big guns once I'm home for the day. She asked me if I was still using the Lidocaine as well (the stuff I can paint onto my tongue). I told her not so much because it's not as effective as it was when I first started using it. She said that's because of the mucusitis. The Lidocaine needs to stay in contact longer in order to penetrate this protective skin that has formed. So, I'm supposed to mix it with a liquid antacid and hold it in my mouth for 5 minutes before spitting it out. Hmmm...might wait until I'm desperate before going through those shenanigans.

I got in trouble for taking a bite of a reuben sandwich last night. Turns out I'm supposed to ease my way back into food like I did when I first got out of the hospital. Cream based soups, ice cream, farina, etc. eventually working my way back up to mashed potatoes with gravy and mac and cheese. I told her I'm able to chew and it didn't hurt too awfully much so what's the problem? She said that a) the fact that it hurts at all is not good and I shouldn't be aggravating things that are trying to heal and b) due to all the swelling that's going on, and my lack of spit, things often don't go down the right paths and my chances of choking are much higher right now. Weird, but okay. I have another appointment with her in 2 weeks. She says it's like the opposite of Weight Watchers. She wants to continue to monitor me to make sure I'm not losing too much weight and to coach me on what I should be eating. So, I now have eating homework. She said during our next appointment she wants me to report back that I tried eating the above listed foods and let her know how it went. She said over the next 5-6 weeks I should notice my taste buds starting to wake up. I immediately argued that I was told it takes 6-12 months for those to come back. She said "wake up" not "come back". She said that I might find that I'm drinking one of my Ensure's and I will actually be able to tell that it's strawberry flavor. I didn't bother to let her know that I'm already there. As you know, I get a very faint aftertaste on a lot of things, like my pretzel stick where I could slightly taste the butter and bread.

Meanwhile, I must have made a face when she told me I'd be seeing her every 2 weeks because she commented that she won't be charging me (my insurance!) for any of these appointments because she's the one that brought me to this state, she feels it's her obligation to see me back out of it. Okay, I'm glad to hear she's not taking advantage of my insurance company but I still miss work for every appointment and it's still a reminder that my life is not normal. <sigh>

She commented about what a trooper I am to have worked through the whole course of radiation treatment. She said it's really unheard of. I had no idea what to say to that other than shrugging and saying hey, I have a mortgage to pay.

Sidebar: What's up with unsolicited touching from strangers? Dr. A pulls her chair so close to me that her knee is brushing against mine the entire time we're talking. Plus she reaches out and strokes my arm with her fingertips every 30-60 seconds. Um, ew? Does bubble of personal space ring a bell??

Allright, that's the latest scoop. I get to see the ENT doc next Friday. Until next time.......

Wednesday, October 10, 2012

October 10 - Today I turned 43 years old. Last year, on my 42nd birthday, I claimed it was going to be my best year ever. This year I'm simply saying things HAVE to be better than last year. Right? Knock on wood?

At least it's started out being better already. Kit took me out tonight for a Fribble at Friendly's (I also tried eating a reuben but that did not go well). And she made me the most beautiful scarf on earth! Then we went and played a game of putt-putt and she let me win. :-)

Everyone keeps asking how I am. Asking if there are any incremental improvements. I keep saying no and it's making me feel like a failure. So, I thought really hard about it yesterday to see what I could come up with. Here's the checklist:

- The bright red burn from my mouth down has faded quite a bit. I think it has even tanned up a little if that's possible.
- The disgusting peeling that was going on across most of my neck is just about done. There are a couple of small patches that I expect to be gone in the next couple of days.
- Nothing in my mouth bleeds anymore when I brush my teeth.
- My hair has stopped falling out in chunks.
- It's slightly easier drinking my Ensures.
- My neck feels slightly less stiff than it has for the past few weeks.
- According to my coworkers, my speech is sounding better and better every week.

No Improvements:
- My throat is still hurting like all get out at that place in the back on the top of my throat. Not sure why it's not healing.
- I'm still only able to sleep for 3-4 hours at a time.
- Everything still tastes absolutely disgusting.
- The 'good' side of my tongue is disfigured and burned (and hurts!).

- My tongue is still swollen and touching the back of my throat, making me gag.
-  Explosive diarrhea is still going on.
- I'm still losing 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.

That's where things are at right now. Hopefully you find this somewhat more uplifting than my flat answer of "no" when you ask me if I'm feeling any better. And yesterday marked 2 weeks since radiation completed which means that I should be done cooking now. Today is my first day of actual healing. Maybe I'll wake up tomorrow and see a huge improvement. I'm not counting on it but hey, one can hope.

Tomorrow is my appointment with the head radiation doc, Dr. A. The only question I can think to ask is, am I getting all the nutrients that I should be getting? I'm a little worried that I'm going to get scurvy from not eating any fruits or vegetables. Also, I have heard that if vegetarians try to go back to eating meat, they get really sick (Kit says she has heard this too!). Is that going to happen to me as well?

I will report back in after the appointment and give you the scoop.

Saturday, October 6, 2012

October 6 - Okay, no improvements but I have a question for the masses.

Does it make sense that I've had, what I consider, some not very small, personality changes since my adventure started?

Reading used to be my absolute fave thing to do. I used to blow through 2-3 books every week. All sorts of genres, wasn't picky, simply loved the written word. Now, post cancer (PC), I haven't picked up a book in months. Actually, that's not true, I've started a few different books and just haven't been able to get into them. WTH?

I haven't watched TV in years. I watch movies, but am not a television show person other than a random show here or there like True Blood or Glee. Suddenly, I'm streaming TV shows like there's no tomorrow. The New Adventures of Old Christine, Wings, Dexter, The Big Bang Theory, The Vampire Diaries, Two and a Half Men, Bones, Lost, Grey's Anatomy, .......I'm a junkie!

I used to hate shopping. It was a form of torture for me unless it was a thrift store. And even then, I only ever went a couple of times a year. And all of my Christmas shopping has been done over the internet for a handful of years now simply so I wouldn't have to actually enter a store. Now PC, I can't stop shopping! This week alone I bought three pairs of shoes at DSW, $50 worth of "stuff" at the Dollar General, a dress and two tops at Macy's, two tankinis and a trench coat from Blair, a piece of wall art from Signals, a dress from Seventh Avenue, two costumes from Arlene's, and I am now thinking about going to Eastview Mall tomorrow to find myself a winter dress. What in the world is going on with this? And would somebody please come confiscate my credit card!

<sigh> There's other stuff too but I'm getting freaked out just talking about it. It seems really odd that I've known myself for years, have been very comfortable with who I am, and now, quite abruptly, I don't recognize myself. Maybe it's normal to reinvent yourself after a life altering event, I just wish I was changing in more positive ways. The next thing you know I'll be getting a boob job and deciding that being an exotic dancer is a great career move!

Tuesday, October 2, 2012

October 2 - Today marks exactly 3 months since my surgeries and 1 week since I was last fried. So I'm here to report where things are at:

Sustaining the euphoria of being done with everything turned out to be mission impossible. Sitting around waiting for your body to heal is about as much fun as watching paint dry. And I suddenly seem to have developed a case of ADD. I simply can't concentrate on anything for more than a few minutes. Can't read. Can't watch TV. Can't play a computer game. Just can't keep my mind still enough to focus. Erg.

So. Supposedly 3 months was what it would take for the tongue swelling to go down and for me to possibly be talking normally. That didn't happen. As I found out last week, radiation actually causes swelling all on its own and the back of my tongue is still touching the back of my throat causing a gag reflex every once in a while. I'm trying to stay drugged up enough to ignore it. Nothing like managing to take all of your medicine and then turning around and vomiting it right back up again. No clue what to do at that point either. Re-take? Wait the 4 hours? Whatever.

I had to call the doc last Friday to call in some more Roxicet for me for the weekend. And today I received a prescription in the mail for another 2 weeks worth. Hopefully, that will do it. I'm taking it partially for the pain and partially for putting some distance between me and all of the other discomforts going on (gagging, nausea, etc.)

On a bright note, the pain has definitely lessened with swallowing and I am back to drinking 3 Ensure's a day (yesterday I drank 4!). Still hurts but it's an ignorable hurt and I know my body needs the nutrition to heal faster so it's all good.

Glad to be working from home again this week so that the bathroom is only 5 steps away (an all liquid diet really screws with your digestion system!) but am also looking forward to being back in the office next week because the isolation isn't sitting well with me.

Had a fantastic weekend with Patilda. Went shoe shopping, played cards, picked pumpkins....I was absolutely spoiled with attention. :-)

Every time I go to Wegman's to pick up a prescription, I end up walking out of there with something that I really should not have bought because I'm not going to be able to eat it anyway. As you may remember from previous posts, I'm a huge fan of salt and crunch. So, Saturday morning found me walking out of Wegman's with a bag of butter twist pretzels. Patty laughed at me. I told her I could at least open the bag and lay in bed smelling it, right? So, that's what I did on Sunday night except I didn't stop there. I actually ate one. a) Holy crap, salt on open tongue, mouth, throat sores.....so not a good idea. b) Pain aside, it was an absolute little bit of heaven. I could very faintly get an after taste of butter and bread! I then had to chug half a bottle of water to wash the darned thing down since I'm still not producing spit but hey, even the slightest degree of progress is still progress! I'll take what I can get!

Other random stuff:
 - Sammy had mentioned Mederma to me so I bought a small tube. You're supposed to use it 3x a day, I'm just slapping some on once a day but I swear I'm already seeing a difference. Probably all in my head but I'm okay with that. :-)

- I think my weight has finally stabilized. I'm somewhere between 145-150. Still chub girl but wearing my size 10 clothes which I'm perfectly happy with.

- I'm seriously considering taking up running along with my gardening/cooking hobby as soon as I'm feeling better. It would be a great way to offset any eventual weight re-gain. I have to sit down and come up with a plan.
- The one item on my bucket list has been put on hold. It turns out land loans are very hard to qualify, secure, etc. Banks want 30% down plus closing costs, assessment fees, etc. Screw that. I don't have quite that much in liquid assets to play with. So, owning land is going back on the shelf for another year or two. Guess I'll concentrate on making my actual living quarters a more fun place to be. I'm noodling with the idea of revamping the family room into a reading/library type room with a gas fireplace, mood lighting, papisan chairs.....gotta do some research.

Okay, enough rambling, you get the gist of where things are at. I'll report back again in a week and see what kind of incremental improvements I can astound you with!