Wow. I have had a crappy week. Today is the first day I've felt somewhat up to snuff since last Wednesday. To celebrate this fact I went to the city pound and adopted three cats today. Yep. Three. Why yes, yes I am the crazy cat lady. I pick them up Monday afternoon. I'll have to post pictures of the new babies once I get them home. Diego is a 3 year old brown and black tiger mix. Although he's still in holding until Saturday. Owners have 5 days to come claim strays and believe me, fat boy looks like he definitely belongs to somebody. What a sweetie though, I couldn't help but sign up to get him anyway. Then there's Sterling. He's a one year old, all black cat. He's lean, lithe, and has legs that go on forever. And talk about nosey, that is one curious cat. He's going to give Itty a run for his money. I'm hoping Mr. Laidback Diego will simply sit on Itty once and will hopefully be left alone. Lastly, there's Ethan. I wasn't even looking at kittens. I prefer the older cats but when I was over talking to Sterling, there was this darned little black kitten in the lower adjacent cage who kept grabbing my pant leg with his claws and yelling at me to get him the heck out of there. His 3 siblings who were also in the cage with him were happy to be piled into a bed having a snooze fest but this little scrap of fur was totally storming the cage. I finally grabbed the cards to adopt Diego and Sterling and headed out of the room and up the hall. I only made it halfway to the front desk and I had to turn around and go get Ethan's card too. I simply couldn't leave that little 4 month old mouth there. So, yeah, three cats are headed to the Quinn household. Baby doll is flipping out. He grilled me like you wouldn't believe. He wanted to know how you introduce new cats to a household, if they go outside, how do they know where to come back to, how will the dogs handle it, how will the other cats handle it. Dude had a billion questions. Monday should be fun. :-)
Okay, so on to telling you about my crappy week instead of babbling about how I'm celebrating feeling human again. When I last left you, I had had my first appointment with Michelle where we actually did all sorts of exercises for 45 minutes. I think that's what kicked off my problematic week.
Thursday, after radiation, I came home and went straight to bed. My jaw was absolutely killing me! It hurt so bad that I was crying! They're always asking me to rate my pain on a scale of 1-10 and if I hurt it's usually a 3-4. I think there was one time where I rated my pain a 5 and it was a really bad day. Well let me tell you, the pain in my jaw was at least an 8. It was THAT bad. It was the empty socket where my tooth used to be that was throbbing so badly. Oxycodone didn't touch the pain one bit. I finally got it down to a dull ache by taking liquid Tylenol and pouring lidocaine gel on the area. It still didn't make it go away but it muted it enough to be bearable. I never made it out of bed on Thursday other than to use the bathroom. Friday morning I woke up at 5:00. Still a dull ache going on so I did some more Tylenol, a shot of Oxycodone, a dose of the good nausea medicine, and 20 oz of Gatorade. I then went back to bed until 6:30 when my alarm went off. I woke up totally pain free. It was freakin' amazing! I felt wonderful! So Friday started out great. Then 2:30 came along. The pain came back with a vengeance. Not good. I immediately did my little miracle combo from the morning but it was not so miraculous this time around. It did dull things up though so I thought I was good to go for the play that baby doll wanted to go see. Well, I ended up throwing up in the car on the way there. Luckily, I'm still sucking on these damn washcloths so it came up, hit the washcloth, and went right back down. Baby doll would have killed me if I puked in his car! Well, actually, sweetheart that he is he would have been totally sweet and understanding about it, but I still would have felt like crud for messing up his car. I threw up again at the play while I was in the bathroom. A small amount escaped that time and I got a red medicine stain on the front of my brand new white down winter coat. Now I'm pissed. On top of it all, the play kind of sucked. It was a college production. The voices weren't that good, the acoustics in the theater were lousy, the casting was odd. I fell asleep for almost half of it.
So Saturday was supposed to be the big flat screen TV shopping day. Yeah right. I ended up on the couch all day long. I was running a fever off and on all day. No more vomiting but I felt like death. I'm supposed to call some emergency number if I run a fever over 100.4. I was running a fever of 100.5. I refused to call. I spent the day watching movies and napping on my man's shoulder. It was actually a pretty good bump day.
Sunday I felt marginally better but still really rundown and the jaw pain came back in force. I stayed right on top of it this time though and kept it to a dull roar. Sunday night though I was doing the regurgitating thing and I woke up coughing crap out of my stoma again! What the hell! It happened like 3 times. That hasn't happened in a while now. Both the regurgitating thing and I swear I did not overeat this time and there was no homemade milkshake involved. And the coughing stuff out of my stoma. I thought the damned fistula had closed which is why Michelle has me drinking water and eating pudding during our sessions! Anyway.....
Monday finally came and I griped to my tech team about my crummy weekend. They called a nurse to see me after my radiation appointment. I went through all of my trials with her. She then went and got Dr. Mike. I went through everything with him (thank goodness it was Monday and I had my iPad so I could simply type everything once and then have people read what was already typed!). Dr. Mike then went and got Dr. S. I went through everything with him. He wasn't happy. He immediately called up and got me an appointment with Dr. V. He also scheduled me to get exrays taken of my chest and my jaw. He wanted pictures of my chest because he was afraid that me aspirating all this liquid caused me to get pneumonia which could account for the fever. He wanted pictures of the jaw to see if some kind of infection had set in or if there was some other reason for my jaw to be killing me. I then went and saw Dr. V. He said he doesn't see anything wrong in the area where they yanked my tooth other than the exposed bone. He said there could be a chronic infection there but it didn't sound like he was going to do anything about it. He said eventually down the road they can file down the exposed bone and I can get the hole capped. He said there was a huge ulcer further back along my jaw from radiation. He said that might be causing the pain and that's simply a price to be paid for having radiation. It will eventually go away once the treatments stop. He then looked at my stoma. He said the fistula has reopened. I'm once again not allowed to take anything orally. Guess that puts a stop to the swallow lessons from Michelle once again. He said it looks like it's the hole they originally put there to hold my speech prothesis. He says if it stays open, they can eventually use it to put another speech prothesis in without having to repuncture. I have no idea if I'm rooting for that or not. Getting something repunctured sure doesn't sound like fun but I'd really like to be continuing on with working on swallowing with Michelle. Anyway, once I was done with him it was off for the usual port draw. Then I got to see Dr. K. All goes well with chemo as far as he's concerned. I won't see him again until Dec. 23rd for a final follow up appointment. Then it was back to infusion so that I could get my chemo treatment. Alas. I was unable to hold my bladder for them like I usually do. This means I did not pee nearly enough for them to approve the start of my treatment. I had to sit around for an hour while they hydrated the hell out of me but even after peeing a second time I still didn't go enough for them. They had to call up and get special permission from Dr. K to go ahead and start the chemo without the necessary urine numbers. Sheesh! Then the jaw pain set in. I immediately asked Nurse Lindy if there were any pain meds she could get me. I told her I had some oxycodone with me but that it usually didn't help much. She paged Dr. Mike to see if he would approve some liquid tylenol for me. I was very upset with myself that I hadn't packed any of that in the lary bag. It's in there now, believe you me. It took FOREVER to get the liquid tylenol so I finally went ahead and took my dose of oxycodone 2 hours early. Then 15 minutes later the tylenol arrived. Between those two things and rinsing my mouth out with the ORa-Magic that Dr. Mike had given me, I was able to take the pain back down to a manageable level. After it made me cry, of course. And for the first time I ever I curled up in a little ball and slept through my treatment. Usually I'm on my iPad answering e-mails or playing some cool games. Not that day, my friend. I was whooped from day after day of crappiness that was going on. I needed that nap too because after chemo was finally done, it was off to radiology to get those pictures taken. Which I did, and that made me cry too. The second machine they stuck me in needed to have my neck bent at angles that it currently cannot go so the tech chick running the machine had to manhandle me a little bit to get me in the right position which hurt like hell and made me cry. I think part of it was exhaustion at this point as well. I didn't get home from the hospital until 4:45. I had been there since 8:30. That was a long freakin' day.
I ended up having to cancel my movie date with Kit because of it. She ended up being my princess in shining armor anyway though. She and her mighty steed came over with gifts of Gatorade and liquid ibuprofen for me so that I could avoid the Thanksgiving shopping craziness at Wegman's. I love that woman.
As mentioned previously, today I finally woke up feeling slightly back to normal. I'm alternating between liquid tylenol and liquid ibuprofen to keep the jaw under control. I'm not even waiting for it to hurt. I'm simply taking something every 4 hours. Dr. S stopped by to see me after my radiation treatment. He said there are some small bubbles in my lungs that show that I AM aspirating some liquids but he says they're nothing to be concerned about. No pneumonia. He said there was nothing found on the xrays of the jaw bone either. There could be some breakdown of the jaw bone starting but since it's not visible yet, he doesn't think we should change our current plan. He said even if it was visible, he still wouldn't want to change our current plan, he's rather wait until all was said and done and then correct it with surgery. He said there's no point in letting the cancer come back and kill me while we dick around with whatever is going on with my jaw. So, that's that. I also signed up to go in for radiation this Friday. Dr. S asked if I wanted to and I said sure. I think he was a little taken aback. He had a whole speech prepared to talk me into coming in for the radiation. He said that 4 days of not being radiated mid-treatment is a big enough window for the cancer cells to start growing again. So, my choice of going in on Friday sounds like a good one to me!
After Dr. S was done with me it was Joanna's turn. She said she had heard about my rough week of fevers and vomiting. She was a little concerned about how that affected my weight but as it turns out, I went up!! Woo hoo! At least one thing came out right!!
Okay, I'm done rambling about all the health crap. Plus I"m getting tired. I think it must be bed time. Some quick fun stuff. I last blogged right before walking out the door to the casino with Baby Doll. He came home with $82 in winnings, I came home with $55 in winnings. I'm seriously loving that place!!
Baby doll remembered that he gets a discount on GE products for some reason. I guess just for being a FedEx employee. So he found my oven for almost the same price as HD had it on sale. I think there's a ~$30 difference which is negligible. So, he's on his iPad right now getting ready to order it. Woo hoo!
I'll end with some pictures tonight. I made something called Sex in a Pan for baby doll's coworkers. I hate when chicks name their desserts stupid stuff like that. I should tell baby doll to just call it pudding cake although knowing the pervs he works with, they'll probably get a kick out of the actual name. Baby doll was also in the kitchen cooking tonight. He and I are spending a quiet Thanksgiving Day together. I bought a small 13# turkey for him with some usual trimmings. He said that he makes a chocolate pie every year for turkey day so I let him take over my kitchen tonight. Here's what we got:
I hope everyone has a safe and fun filled holiday this week! I'll catch you on the other side!
Tuesday, November 26, 2013
Wednesday, November 20, 2013
November 20
The tumor is now totally flat. It's just a dry, white spot on my neck. Yippee! Of course Dr. S thought he should give me something new to worry about last week and was talking about a new lump on my neck. Thankfully I had an appointment with Dr. M on Friday and he said it was nothing. It's just the way the skin graft healed and it has always looked like that. Dr. S saw me on Monday and agreed. I guess he went back and looked at some pictures he took and he just hadn't noticed how lumpy my neck is due to all of the scar tissue. Phew. As I commented to Kunkel though, I'd rather Dr. S be jumping at shadows than simply letting things slide. I'm happy to have him cause me a little needless worry if it means he's watching me that closely! I didn't realize it either but I've been feeling pretty hopeless because of the stupid tumor on my neck. Docs only gave me a 20-30% chance of survival, cancer came back a third time just a few short weeks after surgery to remove the second tumor. It all just seemed so doomy-gloomy. I kind of resigned myself to the fact that I would likely be dead this time next year. Now that the tumor has been made to disappear by concentrating the radiation on it, I suddenly wonder if maybe I'm going to survive this mess for a little longer after all. It definitely put a little bounce back into my step over the past week.
The Jevity 1.5 is in, the Jevity 1.2 is out. One of the doctors had a few cases of the 1.5 laying around too so she donated it to me so that I could start eating the higher calorie food immediately. This left me with 6.5 cases of the 1.2 which I then donated to another patient who was in need. Joanna said he wanted me address so that he could write me a thank you note. We decided it would be better if he simply passed it along through her. And for the first time on Tuesday, I weighed in the same as the week before! Joanna was very relieved. She's glad we finally halted the downward trend. Now we just need to get things to start moving up again. Baby doll and I drove to the Niagara Falls outlet mall this past weekend for a little retail therapy. I wanted to buy him a leather coat for Christmas. I hit my own favorite store, Bass, and for the first time I had to buy a size 0. And yeah, to all the women out there that just groaned, I'm pretty disgusted with myself as well. :-P
On Mondays I keep coming home all hyped up and buzzing around like a crazy woman. I finally asked Nurse Joan at chemo this past Monday what the heck they do to me that causes that. Turns out they give me steroids every week with my chemo and that's what gets me all jumped up. I can now totally understand why the athletes get hooked on this crap! Anyway, I asked her why I get steroids and I guess it's like taking Benadryl after you get stung by a bee. Supposedly it helps suppress any nasty side effects from the chemo that could happen. The other pill they hand off to me during chemo is a nausea med. I'm learning to love anything that helps with the nausea. I ran out of the good stuff last Friday and had to resort to my Ativan and my backup nausea med. Yeah, they just really don't quite cut it. I had a rough day on Sunday. I kept trying to call the refill in to Wegman's for the good stuff but the recording kept saying that it was too soon to refill. I finally mentioned it to one of the nurses. Turns out my insurance company felt that the last batch I got should have lasted me a month. Phbtttt. My team is now arguing with my insurance company and meanwhile the hospital gave me another huge batch of the good stuff for free. Thank goodness. I don't know what's in that stuff but it's like a miracle drug when it comes to getting rid of the queasiness!
Today I had my first official therapy appointment with Michelle. FINALLY. I'm once again feeling like I'm moving forward with my recovery instead of simply treading water. We did all sorts of tongue and lip exercises. She has me drinking apple juice and attempting to eat pudding. I have a whole sheet of exercises that I need to start doing 3x a day. It was a real pick-me-up today to finally start working on being able to eat and swallow again. Not sure when the speech part will get thrown into the mix but I'm happy to take baby steps for now.
A bunch of my FB friends have been posting things that they're thankful for every day this month. I didn't realize it was affecting me reading all of that thankfulness but for the past week now I've been noticing the small things that I'm grateful for. My heat for instance. I am so glad that I am financially able to set my thermostat at 73 degrees and still be able to afford to pay the utility bill every month. I love that my house is so warm and cozy and happy! Of course this also makes me realize that my thyroid medicine is likely to be adjusted again in a few weeks because I"m still having a tough time moderating my body temperature, but whatever. :-) The other thing I've been thankful for is my youth and flexibility. I've mentioned that in the shower I have to wear a stoma cover so that I don't drown myself. I also can't put myself directly under the spray because the collar of the cover doesn't seal well around my lumpy, scar tissue filled neck. Because of this, I have to lean way back with my body to wash my hair without being directly under the spray. I can't imagine being 80 years old and trying to do a back bend like that! My one season of yoga is definitely paying off in that respect!
Anna, one of the radiation techs, keeps telling me that I need to hydrate, hydrate, hydrate. She said that it will help greatly with the fatigue that I've been feeling. I finally bought some Gatorade at Wegman's this week and have been syringing a bottle each evening. I have to say, I definitely do feel quite a bit more alert after sucking down 16 oz of that stuff!
I think that's about it for the health stuff other than the fact that my ear has started aching again pretty badly this week. Not sure if it's the weather or what. I'll give it another week and if it persists, I'll have to mention it to my team. <sigh>
So, some fun stuff. Baby doll and I went back to buy my oven and it was no longer on sale! WTH?? It was only 3 days after we had looked at it the first time. The chickie said things go on sale every Monday and Wednesday so she wrote down the model number of the one I want and I'm checking the website every Mon and Wed to see when it goes back on sale. It's a $200 difference for crying out loud! Today I also decided to check the Sears website for the fridge I'm interested in. I fell out of my chair! In the store, the fridge was $960, online it shows that it's $1189 and that's on sale! Holy crap. I don't need a fridge that bad. I think I am now going to focus on the flat screen for my living room instead. Last Thursday Mr. Jamie came over for dinner. Since I had a bunch of muscle in the house I had him and baby doll reconfigure my sectional couch. I then moved a bunch of stuff around and I am now ready for the TV to be installed. I just have to go purchase the sucker. Maybe baby doll will take me to Best Buy this weekend. I also want to join either BJ's or Sam's club. Maybe he'll take me to do that too.....
I am so impressed with the group of friends that I have, they are simply inspiring and it blows my mind. Most recently on the inspiration list are Kunkel and Justin. Kunkel has always dreamed of being on a TV game show. She heard that Wheel of Fortune had some caravan in Syracuse a few months back where you could go and play some mock games and win goofy prizes like mugs and t-shirts. She went. She ended up qualifying to be on the actual TV show. She was off to CA just a few short weeks ago and her show will air on January 8th. I can't wait to see her on TV!! She's not allowed to tell anyone what the outcome of the game was so I have no idea if she's now a millionaire or not. Actually, even if she won some money, they don't give it to the players until 3-4 months after their show airs. So she won't be a millionaire until April or May. But how cool is that?? To have a dream of being on a game show and then simply making it happen?!? I'm totally in awe of that woman.
Meanwhile, my buddy Justin is huge into shooting. He travels all over the place shooting in tournaments, makes his own bullets, owns like 96 guns or some crazy number like that. At one of his shooting matches a few months back he actually qualified to travel to Spain to compete for a spot in the Olympics. How freakin' impressive is that?? He went, he didn't make it into the Olympics. I guess this so tickled him though that he told me last week that he quit his job at QED. His last day is 12/20. He's going to spend the next two years doing nothing but training to qualify for the Olympics. Say what?? I asked him how he's going to support himself. I guess he's just been socking away money for years now and can easily take two years off from work and not sweat it. Can you imagine?? So, he and his girlfriend are moving to Colorado Springs. I almost cried when he told me. I'm going to miss him fiercely but I am also so excited for him to pursue a dream.
Let's see, what else is on the horizon in the life of Q. Speaking of which, Baby doll and I are going to see a play this Friday called Avenue Q. I guess it's a naughty version of Sesame Street? I was warned that there's puppet on puppet sex. This should be interesting. LMAO!!
I also need to get a hold of Kit. I haven't seen her in a couple of weeks now! We need to go see a movie or something. I'm especially thinking of her today because on a whim, baby doll and I have decided to head over to the casino and have a little fun gambling tonight. She really did create a monster by taking me to that place! So with that, I'm out of here. Wish me luck on the slots!
The Jevity 1.5 is in, the Jevity 1.2 is out. One of the doctors had a few cases of the 1.5 laying around too so she donated it to me so that I could start eating the higher calorie food immediately. This left me with 6.5 cases of the 1.2 which I then donated to another patient who was in need. Joanna said he wanted me address so that he could write me a thank you note. We decided it would be better if he simply passed it along through her. And for the first time on Tuesday, I weighed in the same as the week before! Joanna was very relieved. She's glad we finally halted the downward trend. Now we just need to get things to start moving up again. Baby doll and I drove to the Niagara Falls outlet mall this past weekend for a little retail therapy. I wanted to buy him a leather coat for Christmas. I hit my own favorite store, Bass, and for the first time I had to buy a size 0. And yeah, to all the women out there that just groaned, I'm pretty disgusted with myself as well. :-P
On Mondays I keep coming home all hyped up and buzzing around like a crazy woman. I finally asked Nurse Joan at chemo this past Monday what the heck they do to me that causes that. Turns out they give me steroids every week with my chemo and that's what gets me all jumped up. I can now totally understand why the athletes get hooked on this crap! Anyway, I asked her why I get steroids and I guess it's like taking Benadryl after you get stung by a bee. Supposedly it helps suppress any nasty side effects from the chemo that could happen. The other pill they hand off to me during chemo is a nausea med. I'm learning to love anything that helps with the nausea. I ran out of the good stuff last Friday and had to resort to my Ativan and my backup nausea med. Yeah, they just really don't quite cut it. I had a rough day on Sunday. I kept trying to call the refill in to Wegman's for the good stuff but the recording kept saying that it was too soon to refill. I finally mentioned it to one of the nurses. Turns out my insurance company felt that the last batch I got should have lasted me a month. Phbtttt. My team is now arguing with my insurance company and meanwhile the hospital gave me another huge batch of the good stuff for free. Thank goodness. I don't know what's in that stuff but it's like a miracle drug when it comes to getting rid of the queasiness!
Today I had my first official therapy appointment with Michelle. FINALLY. I'm once again feeling like I'm moving forward with my recovery instead of simply treading water. We did all sorts of tongue and lip exercises. She has me drinking apple juice and attempting to eat pudding. I have a whole sheet of exercises that I need to start doing 3x a day. It was a real pick-me-up today to finally start working on being able to eat and swallow again. Not sure when the speech part will get thrown into the mix but I'm happy to take baby steps for now.
A bunch of my FB friends have been posting things that they're thankful for every day this month. I didn't realize it was affecting me reading all of that thankfulness but for the past week now I've been noticing the small things that I'm grateful for. My heat for instance. I am so glad that I am financially able to set my thermostat at 73 degrees and still be able to afford to pay the utility bill every month. I love that my house is so warm and cozy and happy! Of course this also makes me realize that my thyroid medicine is likely to be adjusted again in a few weeks because I"m still having a tough time moderating my body temperature, but whatever. :-) The other thing I've been thankful for is my youth and flexibility. I've mentioned that in the shower I have to wear a stoma cover so that I don't drown myself. I also can't put myself directly under the spray because the collar of the cover doesn't seal well around my lumpy, scar tissue filled neck. Because of this, I have to lean way back with my body to wash my hair without being directly under the spray. I can't imagine being 80 years old and trying to do a back bend like that! My one season of yoga is definitely paying off in that respect!
Anna, one of the radiation techs, keeps telling me that I need to hydrate, hydrate, hydrate. She said that it will help greatly with the fatigue that I've been feeling. I finally bought some Gatorade at Wegman's this week and have been syringing a bottle each evening. I have to say, I definitely do feel quite a bit more alert after sucking down 16 oz of that stuff!
I think that's about it for the health stuff other than the fact that my ear has started aching again pretty badly this week. Not sure if it's the weather or what. I'll give it another week and if it persists, I'll have to mention it to my team. <sigh>
So, some fun stuff. Baby doll and I went back to buy my oven and it was no longer on sale! WTH?? It was only 3 days after we had looked at it the first time. The chickie said things go on sale every Monday and Wednesday so she wrote down the model number of the one I want and I'm checking the website every Mon and Wed to see when it goes back on sale. It's a $200 difference for crying out loud! Today I also decided to check the Sears website for the fridge I'm interested in. I fell out of my chair! In the store, the fridge was $960, online it shows that it's $1189 and that's on sale! Holy crap. I don't need a fridge that bad. I think I am now going to focus on the flat screen for my living room instead. Last Thursday Mr. Jamie came over for dinner. Since I had a bunch of muscle in the house I had him and baby doll reconfigure my sectional couch. I then moved a bunch of stuff around and I am now ready for the TV to be installed. I just have to go purchase the sucker. Maybe baby doll will take me to Best Buy this weekend. I also want to join either BJ's or Sam's club. Maybe he'll take me to do that too.....
I am so impressed with the group of friends that I have, they are simply inspiring and it blows my mind. Most recently on the inspiration list are Kunkel and Justin. Kunkel has always dreamed of being on a TV game show. She heard that Wheel of Fortune had some caravan in Syracuse a few months back where you could go and play some mock games and win goofy prizes like mugs and t-shirts. She went. She ended up qualifying to be on the actual TV show. She was off to CA just a few short weeks ago and her show will air on January 8th. I can't wait to see her on TV!! She's not allowed to tell anyone what the outcome of the game was so I have no idea if she's now a millionaire or not. Actually, even if she won some money, they don't give it to the players until 3-4 months after their show airs. So she won't be a millionaire until April or May. But how cool is that?? To have a dream of being on a game show and then simply making it happen?!? I'm totally in awe of that woman.
Meanwhile, my buddy Justin is huge into shooting. He travels all over the place shooting in tournaments, makes his own bullets, owns like 96 guns or some crazy number like that. At one of his shooting matches a few months back he actually qualified to travel to Spain to compete for a spot in the Olympics. How freakin' impressive is that?? He went, he didn't make it into the Olympics. I guess this so tickled him though that he told me last week that he quit his job at QED. His last day is 12/20. He's going to spend the next two years doing nothing but training to qualify for the Olympics. Say what?? I asked him how he's going to support himself. I guess he's just been socking away money for years now and can easily take two years off from work and not sweat it. Can you imagine?? So, he and his girlfriend are moving to Colorado Springs. I almost cried when he told me. I'm going to miss him fiercely but I am also so excited for him to pursue a dream.
Let's see, what else is on the horizon in the life of Q. Speaking of which, Baby doll and I are going to see a play this Friday called Avenue Q. I guess it's a naughty version of Sesame Street? I was warned that there's puppet on puppet sex. This should be interesting. LMAO!!
I also need to get a hold of Kit. I haven't seen her in a couple of weeks now! We need to go see a movie or something. I'm especially thinking of her today because on a whim, baby doll and I have decided to head over to the casino and have a little fun gambling tonight. She really did create a monster by taking me to that place! So with that, I'm out of here. Wish me luck on the slots!
Thursday, November 14, 2013
November 14
Dr. S is VERY happy with how my tumor is looking. He said that since it's no longer red and angry, it means there's not a lot of blood in that one spot which decreases the chances of the skin deteriorating and breaking open. This is a relief since getting me healed back up from any kind of boo-boo is quite a project nowadays. I cut my finger peeling shrimp a couple of weeks ago and the darned cut is STILL not healed. And I already complained about my fingers cracking from the dry, winter air. Sammy sent me the wax bath to help combat it which I was really good about using for all of a week and then stopped again. So my hands are quite a hot looking mess at the moment. I just paused in typing this, went downstairs, and plugged in the wax bath. I really need to start giving my hands some TLC. Anyway, the tumor is also starting to flatten out. Hopefully I see Dr. S tomorrow or Monday and he can tell me what's what as far as what to expect with this thing. Will it eventually just shrink down to nothing and disappear?
So last Thursday the radiation machine was broken. They sent me off to my nausea appointment while they tried to figure out what was going on with the machine. I ended up agreeing to get re-hydrated because Nurse Deb PROMISED to have me out in time, unlike stupid nurse Mary. So, I was hooked up to an IV for 4 hours and given some steroids. By the time I was done the radiation machine was still down so I ended up skipping radiation for the day.
I was back home with 10 minutes to spare before Kit arrived to whisk me off to the races. OMG. What a blast! That place is HUGE! I heard a commercial for it on the radio the other day and they said there's over 1500 slot machines in that place. I believe it! It goes on forever! So, they give you a $10 free voucher to start you off and off we went. I was on quite the streak. I managed to get all the way up to $188 on my $10 they gave me. This is on the penny slots, mind you. We tried a couple of nickel slots too but we stayed away from all of the more expensive ones. And of course I didn't quit on the high note of $188, I was having too much fun, but I DID end up walking out of there with $150 in my pocket. Woo hoo! Kit wasn't having very much luck. She was down $45 of her own money when it was getting close to the time we had to leave. We sat down at one more set of machines and my luck finally rubbed off on her. I think she ended up hitting the machine for ~$80-90! So she walked out of there with money in her pocket and her head held high too! It was a good day. Of course I didn't feel like I had gotten to see nearly as many of the machines as I had wanted to see so I snuck back down there the following day as well. I lost $85 in the few hours that I spent puttering around that place. That'll teach me. Ha! I now want to go back some time with baby doll. I think he'd get a kick hanging out for a few hours. It's fun to run around and see what different gimmicks the different machines have. There was one machine that I sat down at where I ended up winning 46 free spins. 46! That's a lot! You'd think with that many spins I would be racking up some serious cash!! Yeah, no. By the end of the 46 spins I had won $10.35. Sheesh. Okay, enough with the gambling, moving on to..........oh, poker night. More gambling. ;-)
Friday night was poker with the guys. For the first time ever, I did not have fun at poker. I thought it was just me because I was feeling a little under the weather that night but without me even saying anything, when baby doll and I got home, he commented that he didn't have nearly as much fun that night as he usually does when we play at my house. I don't think it was the location though. I think it's because JT and I fell down on the job. Normally I'm keeping track of the table and verbally nudging people when things stall and basically I try to keep the game moving. Well, without a voice, it was kind of impossible to do that! JT usually backs me up too and helps with keeping things moving along but he brought his girlfriend with him and he was totally distracted by her so he was less that useless in keeping those yahoos in line. I'm going to have to try to fix it. I went ahead and spent the $100 on that Verbally Text to Speech program that I've been using. I've been using the free version to test it out. The paid version is much nicer. Next poker game I'm going to have that program set up with the volume jacked up and I'll be once again giving verbal cues to players to see if I can keep moving things along. I don't want to lose poker as a fun pastime! That would SO suck!
Okay back to medical stuff. On top of rehydrating me and giving me steroids to help with the nausea, they also gave me a prescription for my BFF, Ativan. I thought it was an anti-anxiety med but I guess it's useful for nausea as well. So I've been using it as a backup here and there. Seems to be working although it might also be what's been zonking me out so bad lately. I went to bed at 7:00 last night. Didn't get up until 7:00 this morning. Buzzed out to radiation, buzzed back, tossed stuff in the crock pot for beef stew (Jamie's coming for dinner tonight!) and then went right back to bed for another couple of hours. Sheesh.
Joanna, the nutritionist, and I are still messing with my food. She put me on that high cal stuff last week which ended up causing SEVERE nausea. So it's out. Yesterday we started trying Jevity 1.5, I'm currently on Jevity 1.2. All seems to be going well. This is good because Jevity 1.5 will add an extra 500 calories into my diet every day which is a pound a week. Fingers crossed that we found a workable solution.
Turns out I don't need to put a new oven on my personal wishlist. Baby doll wants to buy me one for Christmas. Why? Because he's the best boyfriend ever, that's why. :-) We were out appliance shopping this past weekend and found one that we both love. We'll be going back again this weekend to pull the trigger on the purchase. I also want a new fridge. I found one at Sears that I've fallen madly in love with. It's more expensive than the oven though! And it's not even that fancy. I don't want an ice cube maker or anything fancy like that. I simply want a bigger fridge. The one I currently have was the smallest, cheapest one that I could find when I first moved into my house. Time for an upgrade.
That's all the excitement happening over here. Tomorrow I get to see Dr. M again who I haven't seen in a while. Oh! Which reminds me. I ate 1/2 cup of vanilla ice cream via my mouth the other night!! Granted I had to be laying down to do it and it tasted like crap but I was super happy to get the extra calories! And just the motion of eating some food like a somewhat regular person does me a world of mental good. :-)
So last Thursday the radiation machine was broken. They sent me off to my nausea appointment while they tried to figure out what was going on with the machine. I ended up agreeing to get re-hydrated because Nurse Deb PROMISED to have me out in time, unlike stupid nurse Mary. So, I was hooked up to an IV for 4 hours and given some steroids. By the time I was done the radiation machine was still down so I ended up skipping radiation for the day.
I was back home with 10 minutes to spare before Kit arrived to whisk me off to the races. OMG. What a blast! That place is HUGE! I heard a commercial for it on the radio the other day and they said there's over 1500 slot machines in that place. I believe it! It goes on forever! So, they give you a $10 free voucher to start you off and off we went. I was on quite the streak. I managed to get all the way up to $188 on my $10 they gave me. This is on the penny slots, mind you. We tried a couple of nickel slots too but we stayed away from all of the more expensive ones. And of course I didn't quit on the high note of $188, I was having too much fun, but I DID end up walking out of there with $150 in my pocket. Woo hoo! Kit wasn't having very much luck. She was down $45 of her own money when it was getting close to the time we had to leave. We sat down at one more set of machines and my luck finally rubbed off on her. I think she ended up hitting the machine for ~$80-90! So she walked out of there with money in her pocket and her head held high too! It was a good day. Of course I didn't feel like I had gotten to see nearly as many of the machines as I had wanted to see so I snuck back down there the following day as well. I lost $85 in the few hours that I spent puttering around that place. That'll teach me. Ha! I now want to go back some time with baby doll. I think he'd get a kick hanging out for a few hours. It's fun to run around and see what different gimmicks the different machines have. There was one machine that I sat down at where I ended up winning 46 free spins. 46! That's a lot! You'd think with that many spins I would be racking up some serious cash!! Yeah, no. By the end of the 46 spins I had won $10.35. Sheesh. Okay, enough with the gambling, moving on to..........oh, poker night. More gambling. ;-)
Friday night was poker with the guys. For the first time ever, I did not have fun at poker. I thought it was just me because I was feeling a little under the weather that night but without me even saying anything, when baby doll and I got home, he commented that he didn't have nearly as much fun that night as he usually does when we play at my house. I don't think it was the location though. I think it's because JT and I fell down on the job. Normally I'm keeping track of the table and verbally nudging people when things stall and basically I try to keep the game moving. Well, without a voice, it was kind of impossible to do that! JT usually backs me up too and helps with keeping things moving along but he brought his girlfriend with him and he was totally distracted by her so he was less that useless in keeping those yahoos in line. I'm going to have to try to fix it. I went ahead and spent the $100 on that Verbally Text to Speech program that I've been using. I've been using the free version to test it out. The paid version is much nicer. Next poker game I'm going to have that program set up with the volume jacked up and I'll be once again giving verbal cues to players to see if I can keep moving things along. I don't want to lose poker as a fun pastime! That would SO suck!
Okay back to medical stuff. On top of rehydrating me and giving me steroids to help with the nausea, they also gave me a prescription for my BFF, Ativan. I thought it was an anti-anxiety med but I guess it's useful for nausea as well. So I've been using it as a backup here and there. Seems to be working although it might also be what's been zonking me out so bad lately. I went to bed at 7:00 last night. Didn't get up until 7:00 this morning. Buzzed out to radiation, buzzed back, tossed stuff in the crock pot for beef stew (Jamie's coming for dinner tonight!) and then went right back to bed for another couple of hours. Sheesh.
Joanna, the nutritionist, and I are still messing with my food. She put me on that high cal stuff last week which ended up causing SEVERE nausea. So it's out. Yesterday we started trying Jevity 1.5, I'm currently on Jevity 1.2. All seems to be going well. This is good because Jevity 1.5 will add an extra 500 calories into my diet every day which is a pound a week. Fingers crossed that we found a workable solution.
Turns out I don't need to put a new oven on my personal wishlist. Baby doll wants to buy me one for Christmas. Why? Because he's the best boyfriend ever, that's why. :-) We were out appliance shopping this past weekend and found one that we both love. We'll be going back again this weekend to pull the trigger on the purchase. I also want a new fridge. I found one at Sears that I've fallen madly in love with. It's more expensive than the oven though! And it's not even that fancy. I don't want an ice cube maker or anything fancy like that. I simply want a bigger fridge. The one I currently have was the smallest, cheapest one that I could find when I first moved into my house. Time for an upgrade.
That's all the excitement happening over here. Tomorrow I get to see Dr. M again who I haven't seen in a while. Oh! Which reminds me. I ate 1/2 cup of vanilla ice cream via my mouth the other night!! Granted I had to be laying down to do it and it tasted like crap but I was super happy to get the extra calories! And just the motion of eating some food like a somewhat regular person does me a world of mental good. :-)
Thursday, November 7, 2013
November 7
Okay, I'm falling behind again. What can I say, I'm trying to live what life I can rather than sitting around writing about it. :-)
Saw Dr. Mike and Dr. S last Friday AND again yesterday. On Friday my tumor was measuring 1.7 - 1.8 at different spots. Yesterday it was measuring 1.7 all the way around and it is no longer an angry looking red, it has faded to a regular pale skin color. Both doctors are very pleased with this. Dr. S said the only thing to watch for is my skin breaking open over the tumor. He said targeting it with as much radiation as he is, it's going to weaken the skin, and we all know what a hard time I had healing my neck incision after the first surgery in August.
Dr. S was not happy with how little I can open my mouth. He asked me if I've been working with Michelle, the speech therapist, at all, on stretching exercises. I told him no. It's funny that he mentioned it though because I've been wondering the same thing. I had a hard time getting my toothbrush into my mouth the other day and that is simply unacceptable. I'm thinking I should ping Michelle and find out what the game plan is supposed to be with her. Last I knew, we were going to wait for the treatments to be done but if my mouth closes up any more, I don't want to wait that long.
At the end of the appointment yesterday Dr. S took my hands in his and told me that I'm doing a fantastic job taking care of myself and that he's proud of me and I should keep up the good work. Seemed kind of odd. I think that other people in my situation tend to let themselves go and wallow in the valley of despair whereas I flounce in, fresh from the shower, smelling all yummy with my Bath and Body Works lotion, hair all shiny and clean, dressed up in my cute clothes, baking treats for everyone. I think I've sent poor Dr. S into a tailspin. He thanked me yesterday for the pecan bars. He said that he's going to bring me in some Indian sweets to try. I mimed to him that I can't eat, everything goes through the PEG. He was like, oh yeah, I guess you can't taste it if it's going through the PEG. Silly man.
The nausea has been awful. I had forgotten what a horrible sensation it is to feel like you're going to toss cookies all the time (without actually tossing them, mind you). It really sucks. Tuesday was my worst day yet with the nausea. I mentioned it to Nurse Carol yesterday so she sent off a note to Nurse Mary and I now have a 9:30 appointment to talk to someone about it today. I can't wait to see how this goes. Nurse Mary royally pissed me off via e-mail yesterday. When I talked to Nurse Carol about the nausea she said that the chemo peeps could drip something into me on Mondays that should help control things a little better and/or there are other meds they could try on me. Then Nurse Mary e-mails me and starts talking about how she wants to hook me up to an IV today and rehydrate me. First of all, I don't think I'm dehydrated. Second of all, I told her that was fine so long as I'm out of the hospital by 1:00. (Today's the race track with Kit. Hell if I'm going to miss out on that!!) Mary e-mails back that they can TRY to have me out by 1:00. I e-mailed her back and said if they couldn't have me out by 1:00 then I won't agree to being rehydrated. She e-mailed back "Let's take it one step at a time.". She seems to think we're negotiating. If she continues to be under such a false assumption today then I'm going to have to set her straight. Once again, I feel like I'm dealing with someone who has a god-complex going on. What is it with these medical people?
Last Friday my scale dipped again. I went down to 105.2. I immediately bumped myself up to 8 cans of food a day instead of 7 and I sent off an e-mail to Joanna, the nutritionist. She had talked about putting me on a higher calorie food. I pulled the trigger for it. So she gave me some samples of it on Monday. She wants me to try it first before we go ahead and order an entire month's supply from Upstate. She said that the higher fat content can cause an upset tummy in some patients. So I started the new food on Tuesday which was the day that I had my worst day of nausea. I took myself back off the fatty food. Tuesdays and Wednesdays are always bad nausea days after chemo so it doesn't seem fair to test the food on those days. I'm now going to wait until tomorrow and give the new food another try. Hopefully it wasn't what was causing my nausea because I could really use those extra calories!
I don't know what was up with my PEG early last week when it hurt so bad for those couple of days but it magically got better on its own and I haven't had a problem since.
I still have a lot of extra mucus happening but I've been reading the e-mail digest from the lary forum and it turns out it's normal for that to start happening at this time of year. Everyone is complaining about extra mucus right now. Who knew such things were cyclical??
I think that's all I have on the health front. I'm still not losing any hair, thank goodness. I guess my neck skin is finally drying out a little. Nurse Carol made a comment about it yesterday and gave me yet another tube of Aquaphor. I really need to put some on! My mouth is burning, burning, burning. I have 3 different mouth rinses now that Dr. Mike gave me to try to help alleviate the discomfort. Again, I should start using the darned things.
Okay, let's talk about fun stuff.
Today is the big racetrack day with Kit. I have to hit the bank and get some moulah. Here's hoping I don't come home totally empty handed!!
Yesterday some of the guys came over for euchre lunch. It was H and I against JT and RayB. Yeah, H and I beat them all 3 games. Ha! Suckas! Meanwhile I made them chili and cornbread along with a boston cream cake. Seemed to go over well. Instead of flowers, or a wreath, they actually brought me a $90 gift card for Wegman's. How bleeping sweet is that?? It's already burning a hole in my pocket. My friend Sandi posted a recipe called Turtle Fudge on Facebook that I totally want to try. I need to buy marshmallow cream and milk chocolate chips in order to give it a whirl though.
Baby doll had me shaking my head the other day. I told him about the new recipe system. I then made him a new recipe. An appetizer called tomato/bacon cups. As he was munching on them I asked him what he thought. He said they were good and he liked them. I said okay, just like, not love? And he said well, let me eat a couple more and I'll let you know. Yeah, right. That's not how it works. You shouldn't have to eat 6 of them to figure out if you like them or love them, for goodness sake. Meanwhile, he came back and said he loved them and felt they should get a star. Too little, too late, if you ask me. I told him that he could never be a judge on a reality show because he would want to keep everyone, he'd never vote anyone out of the house, or off the island. He's Mr. "Let's keep everyone happy.". Sheesh. The recipe is in the book. It is NOT getting a star. The only way a recipe can get a star from here on out is if the sounds of mastication from the kitchen table get so loud they border on disgusting, and if I see him pick up the plate and lick it clean. None of this asking him to reasonably rate something. I'm simply going to glean it from the physical cues of his eating habits. :-)
Allrighty, that about does me for today. I have an hour to kill before it's off to radiation. I'm going to go water my flowers in my Animal Crossing game and see if anyone new has moved into my town. Man, I love my Wii.
Saw Dr. Mike and Dr. S last Friday AND again yesterday. On Friday my tumor was measuring 1.7 - 1.8 at different spots. Yesterday it was measuring 1.7 all the way around and it is no longer an angry looking red, it has faded to a regular pale skin color. Both doctors are very pleased with this. Dr. S said the only thing to watch for is my skin breaking open over the tumor. He said targeting it with as much radiation as he is, it's going to weaken the skin, and we all know what a hard time I had healing my neck incision after the first surgery in August.
Dr. S was not happy with how little I can open my mouth. He asked me if I've been working with Michelle, the speech therapist, at all, on stretching exercises. I told him no. It's funny that he mentioned it though because I've been wondering the same thing. I had a hard time getting my toothbrush into my mouth the other day and that is simply unacceptable. I'm thinking I should ping Michelle and find out what the game plan is supposed to be with her. Last I knew, we were going to wait for the treatments to be done but if my mouth closes up any more, I don't want to wait that long.
At the end of the appointment yesterday Dr. S took my hands in his and told me that I'm doing a fantastic job taking care of myself and that he's proud of me and I should keep up the good work. Seemed kind of odd. I think that other people in my situation tend to let themselves go and wallow in the valley of despair whereas I flounce in, fresh from the shower, smelling all yummy with my Bath and Body Works lotion, hair all shiny and clean, dressed up in my cute clothes, baking treats for everyone. I think I've sent poor Dr. S into a tailspin. He thanked me yesterday for the pecan bars. He said that he's going to bring me in some Indian sweets to try. I mimed to him that I can't eat, everything goes through the PEG. He was like, oh yeah, I guess you can't taste it if it's going through the PEG. Silly man.
The nausea has been awful. I had forgotten what a horrible sensation it is to feel like you're going to toss cookies all the time (without actually tossing them, mind you). It really sucks. Tuesday was my worst day yet with the nausea. I mentioned it to Nurse Carol yesterday so she sent off a note to Nurse Mary and I now have a 9:30 appointment to talk to someone about it today. I can't wait to see how this goes. Nurse Mary royally pissed me off via e-mail yesterday. When I talked to Nurse Carol about the nausea she said that the chemo peeps could drip something into me on Mondays that should help control things a little better and/or there are other meds they could try on me. Then Nurse Mary e-mails me and starts talking about how she wants to hook me up to an IV today and rehydrate me. First of all, I don't think I'm dehydrated. Second of all, I told her that was fine so long as I'm out of the hospital by 1:00. (Today's the race track with Kit. Hell if I'm going to miss out on that!!) Mary e-mails back that they can TRY to have me out by 1:00. I e-mailed her back and said if they couldn't have me out by 1:00 then I won't agree to being rehydrated. She e-mailed back "Let's take it one step at a time.". She seems to think we're negotiating. If she continues to be under such a false assumption today then I'm going to have to set her straight. Once again, I feel like I'm dealing with someone who has a god-complex going on. What is it with these medical people?
Last Friday my scale dipped again. I went down to 105.2. I immediately bumped myself up to 8 cans of food a day instead of 7 and I sent off an e-mail to Joanna, the nutritionist. She had talked about putting me on a higher calorie food. I pulled the trigger for it. So she gave me some samples of it on Monday. She wants me to try it first before we go ahead and order an entire month's supply from Upstate. She said that the higher fat content can cause an upset tummy in some patients. So I started the new food on Tuesday which was the day that I had my worst day of nausea. I took myself back off the fatty food. Tuesdays and Wednesdays are always bad nausea days after chemo so it doesn't seem fair to test the food on those days. I'm now going to wait until tomorrow and give the new food another try. Hopefully it wasn't what was causing my nausea because I could really use those extra calories!
I don't know what was up with my PEG early last week when it hurt so bad for those couple of days but it magically got better on its own and I haven't had a problem since.
I still have a lot of extra mucus happening but I've been reading the e-mail digest from the lary forum and it turns out it's normal for that to start happening at this time of year. Everyone is complaining about extra mucus right now. Who knew such things were cyclical??
I think that's all I have on the health front. I'm still not losing any hair, thank goodness. I guess my neck skin is finally drying out a little. Nurse Carol made a comment about it yesterday and gave me yet another tube of Aquaphor. I really need to put some on! My mouth is burning, burning, burning. I have 3 different mouth rinses now that Dr. Mike gave me to try to help alleviate the discomfort. Again, I should start using the darned things.
Okay, let's talk about fun stuff.
Today is the big racetrack day with Kit. I have to hit the bank and get some moulah. Here's hoping I don't come home totally empty handed!!
Yesterday some of the guys came over for euchre lunch. It was H and I against JT and RayB. Yeah, H and I beat them all 3 games. Ha! Suckas! Meanwhile I made them chili and cornbread along with a boston cream cake. Seemed to go over well. Instead of flowers, or a wreath, they actually brought me a $90 gift card for Wegman's. How bleeping sweet is that?? It's already burning a hole in my pocket. My friend Sandi posted a recipe called Turtle Fudge on Facebook that I totally want to try. I need to buy marshmallow cream and milk chocolate chips in order to give it a whirl though.
Baby doll had me shaking my head the other day. I told him about the new recipe system. I then made him a new recipe. An appetizer called tomato/bacon cups. As he was munching on them I asked him what he thought. He said they were good and he liked them. I said okay, just like, not love? And he said well, let me eat a couple more and I'll let you know. Yeah, right. That's not how it works. You shouldn't have to eat 6 of them to figure out if you like them or love them, for goodness sake. Meanwhile, he came back and said he loved them and felt they should get a star. Too little, too late, if you ask me. I told him that he could never be a judge on a reality show because he would want to keep everyone, he'd never vote anyone out of the house, or off the island. He's Mr. "Let's keep everyone happy.". Sheesh. The recipe is in the book. It is NOT getting a star. The only way a recipe can get a star from here on out is if the sounds of mastication from the kitchen table get so loud they border on disgusting, and if I see him pick up the plate and lick it clean. None of this asking him to reasonably rate something. I'm simply going to glean it from the physical cues of his eating habits. :-)
Allrighty, that about does me for today. I have an hour to kill before it's off to radiation. I'm going to go water my flowers in my Animal Crossing game and see if anyone new has moved into my town. Man, I love my Wii.
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