Wednesday, April 24, 2013

April 24 - Had my appointment with Dr. C last Thursday. Everything is looking good as far as the cancer not coming back and the swelling continuing to go down. I asked him about the ongoing thrush. He said I will likely have chronic thrush for the rest of my life. He said that a large percentage of people who have radiation done to the head and neck end up with it. He said that the radiation permanently changes the "flora" in your mouth. I told him I was sort of hoping that once I start producing normal amounts of spit, the thrush might go away. He said 'maybe' while shaking his head in the negative. You gotta love the mixed signals there!

He had me smile for the PA and was telling her that you can tell my "something" muscle (I didn't catch the complicated name for it) was snapping back into place. I had been wondering about that! My smile has been 'off' for months and since it was my all time most favorite thing about myself, I was a wee bit pissed. I've noticed in pictures recently though that it's starting to get back to normally. At least one thing will eventually go back to the way it was!

I also talked to him about the debulking. He had told me that we could assess it after 12 months. Now he's saying I'll probably want to wait 18 months. I complained that I can no longer really laugh, or sing, or hit high notes with my voice, etc. I constantly sound hoarse, like I'm coming down with a cold (I've had numerous concerned customers ask me that exact thing on the phone!) He basically said I'm going to have to accept the fact that changes like that might be permanent and 'it is what it is'.

Needless to say, I cried while driving home from that appointment. Dude is never very cheering and as I mentioned previously, I think this damn implant is effing with my emotions. Whatever. I have a man who's crazy about me, an awesome circle of friends, exciting goals ahead of life rocks despite this whole tongue business. :-)

My knee is still slightly tweaked but I ran the 5k last Saturday anyway. The weird thing was that running actually made my knee feel good! Kind of warmed it up and stretched it out. The race itself was fun! They throw powdered paint on you throughout the event. The only fly in the ointment is that it hailed during the race. Can I tell you how painful it is to run face first into windy hail??

Meanwhile, another 5k this Sunday and I think Scott wants to sign up for one to do together on May 11th so this running thing seems to be sticking with me!

I was just re-reading the last blog. The itchy thing with my ribcage went away at some point in time. I never did figure out what that was all about.
My blonde move of the week. I made strawberry shortcake for dessert the other night. I made sure to make some simple syrup to add to it because at this time of year, strawberries just aren't that sweet. So, Scott and I were eating it and I complained that the simple syrup still didn't really sweeten up the tartness of the strawberries. Scott just looked at me for a second and then let me know that it actually was sweet, although not overly so. It was at that point that I remembered that I currently can't taste sweet. What the hell was I thinking? I can't believe I completely and utterly forgot about my messed up taste buds for an entire 30 seconds!! I can't figure out if I'm losing my mind or if I've gotten so used to the 'handicaps' that I've been living with that they've faded into the background.

- Thrush sucks but it sounds like I'm going to have to learn to live with it.
 - Lack of spit still making eating somewhat difficult but it's getting better.
- Bullfrog effect still happening in the morning and when I eat salty foods.
- Garbled talking - Plus I've noticed that I've been accidentally biting my "flap" when I talk for the past week now. I think it might be because I keep trying to talk at the speed I used to talk at and I just don't think it's doable anymore. I need to slow it down and keep it slowed down.
- Partial taste buds - Sweet is still waking up slowly.
-Still losing hair but it has definitely slowed down at this point. New growth is coming in now too and I have an alfalfa thing going on. I keep trying to brillocream it down but it just doesn't want to go. Kind of cracks me up......

Fun stuff:

Hardwoods have been installed! They're beautiful! Now I just need to find the time to assemble all the darned furniture I bought for the front room so that it can once again be my office......

Patilda, T, and I had an absolutely fabulous weekend together! Wicked was most excellent, and hanging out with the peeps does the body good!

Sunday night I went to dinner with Kit and Dohi-san. We wanted to go to Tavern 58 but it turns out they're closed on Sundays! That's crazy! We ended up at Pomodoro's which is another fave of mine. As I'm sure the waitress could tell since I had just been there the night before with Patilda and T! Ha!

This weekend Scott and I are playing 18 holes at Durand on Saturday and then I have my 5k on Sunday. A fairly mellow weekend for once, thank goodness. I found the absolute best recipe for BBQ pork ribs on so I'm going to do some of those up on the grill this weekend as a special treat to celebrate the gorgeous weather we're supposed to finally have! Woo hoo!

Tuesday, April 16, 2013

April 16 - Okay, procrastinator that I am, I just finally called in the prescription for thrush today. I will pick it up after work tomorrow. Eating is becoming really problematic. I choked on dinner last night and I choked on lunch today. I really have to get this swelling to go back down! My appointment with Dr. C is this Thursday. I'm going to see if ongoing thrush is normal in regards to his other patients.......and see if there's anything else I could be doing to combat it or if it's just a waiting game.

My knee is still slightly tweaked. Castor oil did not help. I called off yoga again tonight and I did, indeed, let Suzanne know that I'm done for the spring/summer season at this point.

I'm not sure I'm digging my birth control implant. I feel like I'm on the edge of tears fairly regularly which is absolutely no fun. A couple of friends said to give it time, I should get used to it and my emotions should even out. So, I'm riding the waves of being blue the best that I can. I really hate being a girl.

I also seem to be having a mild allergic reaction to something. My chest and ribcage area has a slight, itchy rash going on. I'm still investigating the root cause of that as well.

Did I complain yet that my nose runs every time I eat? How weird is that? It's not like I'm eating anything spicy, because hey, my tongue can't handle that right now. It's just the act of chewing up food and swallowing that seems to cause my nose to run. The human body is baffling.

Scott was saying that he can tell golf season has started because the top of his head is now sunburned. This got me wondering if my lovely thinning hair is going to allow that to happen as well. Thank goodness I now own an incredibly cute, pink Yankees hat. I'll be sure to wear it while I'm golfing in a couple of weeks!

- Thrush sucks. Prescription pickup happens tomorrow.
- Lack of spit still making eating somewhat difficult but it's getting better.
- Bullfrog effect still happening in the morning and when I eat salty foods.
- Garbled talking - The thrush swelling my tongue makes it much worse but when I saw Sammy this past Sunday she said I sounded even better than when she saw me a month or so ago so it would seem improvement is still happening.
- Partial taste buds - Some sweet stuff I can get a hint of, other sweet stuff not at all. I'm still trying to figure out why. At first I thought it was processed sugar versus natural sweeteners like honey but I can taste some processed sugars, so I'm still trying to figure it out.
-Still losing hair but it has definitely slowed down at this point.

Fun stuff:

The trip to Cleveland was fantastic! Although the game actually got rained out. But honestly, I could sit in the backyard watching grass grow with my honey-bunny and it would be the best time ever. What can I say, I simply enjoy spending time with him! We went to the Cleveland zoo on Friday, which I highly recommend. It was huge and beautiful! So huge though that we were wiped out and starving by 2:30 in the afternoon (and we didn't even see it all!) so we stopped at an Applebee's and then headed home. The Rock and Roll Hall of Fame will have to wait until some other time.

Saturday morning I painted all of the gum shoe and baseboards that had been delivered. Saturday evening I helped celebrate Scott's niece's birthday. Her 2 1/2 year old daughter, Addison, was totally cracking me up. She had me doing the itsy, bitsy spider with her except I couldn't get the fingers right for when the spider was climbing! Who knew you needed to be talented to execute a children's song!

Sunday I was off to Liverpool to hit Destiny Mall with Sam. We had a blast on the Canyon Climb. We spent a good hour traipsing around on the obstacles far above the ground and then shopped our little hearts out. Another personality change has come to light, I now seem to be digging dresses. I've never been a dress girl in my life but I bought (2) on this shopping spree to go along with the handful of others I've purchased over the past few months. I think this is going to be the summer of dresses!

Tomorrow my hardwoods get installed. I'm super psyched!!

Friday night Patilda and T come into town. Patilda and I are running the Color Vibe 5K on Saturday morning (knee willing, of course) and then I have tickets for the 3 of us to go see Wicked on Saturday night. Then on Sunday night I'm having dinner with Kit and our good friend Dohi-san from Japan.

Busy, busy weekend as usual! I've started making myself pause for a few seconds before agreeing/signing up for new plans. As excited as I get about all the fun and interesting things there are to do out there in the world, sometimes I need to stop, take a breath, and be still with myself.

Tuesday, April 9, 2013

April 9 - Damn! I was doing so well!

The thrush is back. I think I only made it 2 weeks since I took the medicine!! Yesterday I woke up and my tongue was all swollen and I did nothing but spit blood the entire time I brushed my teeth. My speech was back to being awful with the thickened tongue and eating, even non-spicy foods, is once again painful. ARRGHHH! I meant to call in the second prescription today but it blew out of my mind. I'll have to call it in tomorrow morning and see if I can pick it up after work.

I was way excited because I ran 3.14 miles on Sunday! Alas, I've been limping ever since. I had to call Suzanne and bail out of yoga tonight because there's no way my knee was going to be able to hold any standing postures let alone allow me to do pigeon, backbends, dog, or cobra. She told me to go to the India House store and pick up some cold pressed castor oil. Tonight, when I'm getting ready for bed, I need to heat some of it in a water bath and massage it in. She swears it will fix whatever ails me. We'll see. I already know what ails me because I had a doctor look at it a decade or so ago. I have a bone spur in my left knee that every once in a while shifts, and starts rubbing things that it shouldn't. If the castor oil fixes THAT, I will switch over my beliefs to whatever it is that Suzanne believes in!

I was feeling extra guilty about bailing on her tonight because I think next week is class 6 of 6 and I'm going to tell her that I'm not signing up for the next set of 6. Peg told me that Suzanne stops classes in the summer anyway but I guess not until the end of June, I need a break sooner than that. Especially since I signed up for a golf league for Thursday nights which starts on May 2nd. There's only so much stuff you can fit into a week, people!

So, Friday saw Scott and I at Shadow Lake for 9 holes. By hole 7 I couldn't feel my fingers. Still a little nippy for golf but it felt fantastic to be outside! On Saturday I saw Sandi and she handed off her old set of golf clubs to me. Which, please note, are still 3,000 times better than what I'm playing with now! So, now I need to go get some practice with these babies. I signed up for a four session 'golf academy'. Unfortunately it doesn't start until 5/13, which is 2 weeks AFTER the league starts, but hey, that's okay, maybe the girls can let me know if they see a noticeable improvement after I get some lessons!!

After popping in to see Sandi, I headed out to Chili's in Clay, NY to meet up with T and Vic. Unfortunately, during dinner a piece of steak got wedged in my throat because of the swelling. I tried washing it down with water, it wouldn't budge, I ended up spitting up in my lap, and had to make a dash to the bathroom. How freakin' embarrassing! I haven't had a choking incident since the end of January. Was kind of hoping I was over those. Guess not.

We then headed over to the movie theatre and T and I stopped in the bathroom. It was at that point that I realized we must have been eating something that was really salty because my neck had ballooned up again. <sigh> Some days it just never seems to end.........

So, The Host was pretty good. They did a good job in staying true to the book but T and I agreed that the while the story made for a good read, it played kind of slow on the big screen.

I got the second quote on the hardwoods. The guy came in at $4700 and he seriously pissed me off in any number of ways. Between being late, talking down to me, not having a clue.....I was unimpressed all the way around. So, Donna will be here tomorrow to drop off the wood and installation happens next Wednesday and Thursday.

This past Sunday I worked on laying out my new office from 10:30 am until 5:00 pm. I taped sheets of newspaper together and cut them into the dimensions of the furniture I was thinking about buying and laid them out in the front bedroom to see where everything would fit. I researched like a crazy woman on the internet to get the best prices around. At the end of the day, I spent $2400. This got me: A desk, office chair, bookshelf, book/object shelf, filing cabinet, floating wall shelves, end table, new doorknobs, new light fixture, 40" flat screen, blu-ray player, reading lamp, floor protector, and a chaise lounge. I didn't think that was a bad price tag for outfitting an entire room. Scott says it's going to look really sweet and I'll probably never want to leave the room once I've put it together. I think he's right!

So, big upcoming plans this week. Tomorrow night is a caving class. Joe is going to teach some newbies about the origins of Speleology and talk about gear. I'm in major need of a refresher course so I'll be there with bells on! Thursday morning Scott and I are off to Cleveland to see a Yankees game, check out a zoo, and take a tour of the Rock and Roll Hall of Fame! Back home late on Friday night, exhausted but happy, I'm sure! Sunday I'm heading back to Liverpool because Sam and I have big plans to hit the Destiny Mall and do it up! We're definitely doing the rope course and I'm hoping to convince her to do the indoor go-karts and WonderWorks. We'll also be checking out all the stores that we've never heard of. Hello summer wardrobe!

Monday, April 1, 2013

April 1st - Ooh! It's April Fool's Day! I wonder if anyone is going to play any jokes on me today.....

So, the thrush is back under control for now. Thank goodness. Last week was the most painful it's been in a while!

My 2.5 mile run on Saturday was fantastic!! I was supposed to do six intervals of walking for two minutes and running for 5 minutes according to my NoBo homework. I ended up running the entire 2.5 miles!! Mind you, I was really slow, not quite 5 mph but still. I ran for 32 minutes straight. It felt awesome! Here's a link to the stats: I was 146 out of 241 peeps. :-)

Scott is finishing up his first week of NoBo training as well so I've started scoping out some 5K's in the May/June/July timeframe for us to do together. Who knew exercise could be so much fun!

Had my Nexplanan inserted this past Friday. I didn't feel a thing getting it inserted but goodness, it's like 2 inches long! For some reason I thought it would be a lot smaller than that. And while I was there, I told Dr. K about my training to run 5K's. She thinks it's wonderful! She said so long as I'm getting the nutrition I need, she can't think of anything healthier I could possibly do!

Scott and I went to Pasta Villa for dinner on Friday night. (Why do I think that both JBB and Karen told me to carbo load the night before a race??) I asked the waitress if she could bring me an extra glass of water or two because I have swallowing problems. She said "Me too. Radiation?", (at which point I think both Scott and I did a double take!) I said "Yeah. Tongue cancer?", she said "No, nasal cancer.". We then proceeded to swap some stories and details. It was way weird. I asked how long ago her radiation treatments were and she told me they were a year and a half ago and she's STILL experiencing dry mouth, having to suck on tic tacs all the time, and has a very hard time eating bread. I was surprised! I told her that I was told it only takes 6 months to a year to bounce back. She said that she was told the same thing initially but now they're telling her to expect it to take 4-5 years. GAH! This lines up with what Mr. Price had been telling me about our local radio DJ as well. He also had some kind of nasal cancer and was still having saliva problems a few years down the road. I was having a slight freak out with this info. Scott sarcastically said "Yeah, because you should be listening to your waitress.". He has a point but still, a little anxious. Meanwhile, I started thinking really hard about my saliva situation and I'm pleased to report that I licked a couple of envelopes over the weekend. THAT was something I couldn't do a couple of months ago. And I feel like spit production has slowly been increasing. Maybe nasal cancer and tongue cancer don't have quite the same effects? Or, she looked to be a bit older than me so maybe I'll bounce back sooner being relatively young? Fingers crossed all the way around.

I'm switching my list so that it's titled Improvements instead of No Improvements. A little half glass full attitude passed along by my sweetie. :-)

- Thrush is currently back under control. One of these times it will hopefully stay gone.
- Lack of spit still making eating somewhat difficult but it's getting better.
- Bullfrog effect  - I've noticed eating salty food makes my neck balloon way up. Not that I care. It's not painful, just ugly, and really, who the hell am I trying to impress at this point in time. Ha!
- Garbled talking - Some days are better than others.
- Partial taste buds - Even more improvement in the sweet department. I chewed on a couple of Good and Plenty at the movie theater last night. I could tell they were licorice flavor but the candy coating on the outside was still a bit of a loss for me. Soon............
-Still losing hair but it has definitely slowed down at this point.

Fun stuff:

Other than the big run, the weekend was peaceful. Yesterday Scott and I went to see the movie Oz. It was cute but I could have waited for the DVD release. I made a ham with trimmings. It ended up being a bit dry which bummed me out. I would start experimenting to see what I did wrong but the damn thing cost $50!! I'd rather buy lobster and experiment with that instead! ;-)

The main floor of my house is finally ready for hardwoods. Woo hoo! I buzzed home for 15 minutes this morning to have someone come take a look (and measurements). I was super impressed because it was a woman that came out to assess what I needed done and she's the one that would be doing the work. How cool is that?? The quote from her is $3500 which seems really reasonable to me. I have a second company coming tomorrow at 4:00 to also give me a quote. Either way, I'm hoping to get something scheduled by the end of the week! Thank goodness! I can't wait to have my house put back together. I've been so disorganized not having an office. I've started looking at office furniture on-line. I should probably take some measurements in the front bedroom and physically go to some stores and look at stuff as well. I think the back bedroom is going to stay empty for a while until I decide what I'm really going to do with it. Next up will be remodeling the family room. I had originally planned on turning it into a cozy reading room but now that I've been doing all this running stuff, I think I would be better off making it my workout room. Especially since it's on a concrete slab. It would be perfect for the treadmill. I'm going to wait a few months on that though. I want a breather from this remodeling crap. It will be nice to simply hunker down and enjoy my house for a bit!

Upcoming fun stuff. I took this Friday off, just for the hell of it. It's supposed to be 51 degrees, partly cloudy so Scott said something about heading out to golf. First round of the season! Woo hoo! Saturday I'm headed to Liverpool to visit Sandi for a bit. She has some golf clubs to give me because she recently upgraded. Then I'm headed over to Chili's and the Great Northern Mall to do dinner and a movie with T and Vic. T and I both read the book The Host and loved it. We're super pumped to see the movie!

I was telling Scott last night that at the beginning of the year I felt that I was paying way too much attention to cancer recovery milestones that seemed slow in coming. This is why I signed up for yoga and NoBo. A) to start feeling healthy again and B) so that I would have some positive milestones to look forward to, such as running a 5K and being able to do 20 pushups in a row. As it turns out, meeting him has been even better than anything I came up with to take my mind off of things. Every single week I look forward to spending time with him. Whether it's celebrating a holiday, going to see a movie, making golf plans (or really, just snuggling up with him on the couch), I wake up every day excited about the next adventure on the horizon with him! Thank you, baby!