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:
Improvements:
- 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.
Tuesday, October 16, 2012
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.......
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:
Improvements:
- 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.
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:
Improvements:
- 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!
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!
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!
Friday, September 28, 2012
September 28 - Mentally, I'm over the moon. It feels so good to know that no more damage is willfully going to be done to my body!
Physically, holy crap, I'm a mess. I can't believe how much I hurt!
Now, when it's most important to be drinking my (3) Ensure's a day to give me the energy I need to heal the garbage dump that has become my body, I can't swallow anything! Two sips and I have tears running down my face and I'm promising the world anything to just make the pain stop. Which it does if I stop drinking, so that's what I do. Not good.
So there's this whole timing, coordination thing that I've had going on. I paint the Lidocaine on my tongue to temporarily numb everything up. Then quickly do the miracle mouthwash and the liquid Roxicet. I then wait for 30 minutes for that stuff to kick in. Paint more Lidocaine on and then chug as much Ensure as possible. The one sticking point is that the place that hurts the most is the top, way, way back of my throat. The only way to get it numb in that particular spot is to probably stand on my head while swallowing a mouthful of Lidocaine. I have not resorted to that yet. I just choke down what I can with 75% of the pain numbed out and let the tears flow. <sigh>
Working from home this week has been a huge help. I can take 3 breaks a day to go through what I described above. And it's nice to be able to down the pain meds every four hours without having to worry about driving or anything. Plus, when I'm at home, there's no one to make me talk, which is an exercise in massive pain, all in itself. Lis IMed me yesterday about boxes piling up at my desk. The only packages I ever get at work are RMA's which are not usually urgent so I wouldn't normally worry about them but she was in a panic and putting my boss in a panic, and whatever. I decided to buzz in for a couple of hours yesterday to put in some face time. I ended up talking to at least 6 different coworkers about how I was feeling. Nice to be loved, but I'd rather be home not speaking. :-) On the bright side, I got to sit with the boss for a few minutes and he okayed me working from home again next week which came as a huge relief. And hopefully by the end of next week, pain will be washing out and away instead of washing in.
I'm still doing the tank top every day but the Lubriderm didn't last long. Turns out it's not as neutral as I supposed and now that skin is actually peeling from my face and neck, that stuff burns! So, a quick trip to CVS and I have a large tube of the Aquaphor medical ointment that was originally prescribed. My neck is looking a TON better after only 3 days!
So, Tuesday I brought my tech team both an ultimate chocolate cake, and an ultimate white cake. They were in pig heaven. There were hugs all around after the last treatment and I took my lovely Silence of the Lambs mask with me. Tried handing it off to JT yesterday, told him he could use it as target practice when I cheesed him off at work. He said that even HE isn't that evil (yeah, right). But Maynard was standing there and said he wanted it so my mask is now hanging in a place of honor back on the shipping dock. It was making me laugh yesterday every time I walked past it!
And Tuesday at lunch R and Kunkel stopped by with a huge bouquet of absolutely gorgeous flowers and some fun balloons! Yay! Celebration of no more nuking! It was absolutely perfect. I was sitting there thinking okay, in the past I would be drinking, smoking, and eating in celebration of something like this. Since all 3 of those are off the table, I wasn't sure what was left. I did a little softshoe dance in my living room which felt pretty good but the flowers and balloons were the winner of the day. ;-)
Wednesday evening, I doped up on a bunch of pain meds and headed to my friend Kit's retirement party. Today marks her last day of being employed! She's such a lucky, lucky thing! I'm so envious! Anywho, it was a really nice venue at a golf ball and racquet club. The hand passed hors d'oeuvres were killing me. Stuffed mushrooms, crab cakes, coconut shrimp. I'm starving and not only does it hurt too much to eat, but even if it didn't hurt at all to eat, everything tastes like crud anyway due to dead taste buds. UGH! I don't know how much of this I can take!! Phew, okay, back on topic, it was a really sweet get together for Kit. Our county executive, Maggie Brooks, gave an awesome speech and the turnout was spectacular. There are very few people I look up to in life. I view most peeps in my world as equals, but I have to say, Kit is definitely someone I have admired from day one and she continues to impress me with each continuing day that I know her. Meanwhile, I saw a a bunch of the people I used to work with 14 years ago so catching up was a lot of fun. And I was told by all and sundry that I look wonderful! Amazing what dumping 35 pounds can do! Now, if only my inside would heal and match my outside, I'd be all set.
Yesterday was the dentist to get fitted with the fluoride trays. It was a 5 minute in/out thing. I told the dentist all the different things I'm doing in an effort to keep my mouth clean and healthy. Biotyne at night, water pik 3-4 times a day with the salt/baking soda mixture, the warm steam humidifier. She was impressed and said I'm doing an excellent job. So, I just have to wear these trays for 5 minutes twice a day to help with some fluoride treatments and I go back in two months so they can paint a treatment onto my teeth and see where I'm at from a 'tooth health' perspective.
I also got a call from the radiation doc's office yesterday. They had scheduled a follow up appt for me for 11/1. They were calling me to move it up to 10/11 because they were unhappy with how much weight I lost. Whatever. Dr. A can yap at me all she wants, I'm not letting her put a feeding tube in. I'm done letting anyone hurt me for at least the next year. No more procedures. No more cuts. No more poking and prodding. We are now moving forward. The most I will allow done is taking blood and doing the CAT scans. So, I'll go to the appointment, let her charge my insurance some outrageous fee, let her blah, blah, blah wash over me, and then I'm home again, home again.
Which brings us up to today. It's 2:36 am and I'm wide awake, mouthing off in my blog. Sleep is kind of a hit or miss thing. Again, nice working from home just in case I have a night of insomnia and need a nap. Haven't had to take one yet this week but at least I know the option is available. This weekend Patilda is coming up to hang with me again. Play some games, shoot the breeze, and just be with me in general. I was whining to my man-servant last weekend that I've always loved being a solitary person and my alone time is super precious to me but I've noticed over the past few months that I've been getting a little lonely here and there! The horror! Say it isn't so! He said it makes sense because I've been under the weather. He doesn't think anyone out there wants to be alone when they are sick, especially if it's a prolonged occurrence like mine. I guess I'll buy that. I sure hope once my health is back my independence bounces back as well. Being lonely really kind of sucks! I don't recommend it! Thank goodness for visiting friends. :-)
Physically, holy crap, I'm a mess. I can't believe how much I hurt!
Now, when it's most important to be drinking my (3) Ensure's a day to give me the energy I need to heal the garbage dump that has become my body, I can't swallow anything! Two sips and I have tears running down my face and I'm promising the world anything to just make the pain stop. Which it does if I stop drinking, so that's what I do. Not good.
So there's this whole timing, coordination thing that I've had going on. I paint the Lidocaine on my tongue to temporarily numb everything up. Then quickly do the miracle mouthwash and the liquid Roxicet. I then wait for 30 minutes for that stuff to kick in. Paint more Lidocaine on and then chug as much Ensure as possible. The one sticking point is that the place that hurts the most is the top, way, way back of my throat. The only way to get it numb in that particular spot is to probably stand on my head while swallowing a mouthful of Lidocaine. I have not resorted to that yet. I just choke down what I can with 75% of the pain numbed out and let the tears flow. <sigh>
Working from home this week has been a huge help. I can take 3 breaks a day to go through what I described above. And it's nice to be able to down the pain meds every four hours without having to worry about driving or anything. Plus, when I'm at home, there's no one to make me talk, which is an exercise in massive pain, all in itself. Lis IMed me yesterday about boxes piling up at my desk. The only packages I ever get at work are RMA's which are not usually urgent so I wouldn't normally worry about them but she was in a panic and putting my boss in a panic, and whatever. I decided to buzz in for a couple of hours yesterday to put in some face time. I ended up talking to at least 6 different coworkers about how I was feeling. Nice to be loved, but I'd rather be home not speaking. :-) On the bright side, I got to sit with the boss for a few minutes and he okayed me working from home again next week which came as a huge relief. And hopefully by the end of next week, pain will be washing out and away instead of washing in.
I'm still doing the tank top every day but the Lubriderm didn't last long. Turns out it's not as neutral as I supposed and now that skin is actually peeling from my face and neck, that stuff burns! So, a quick trip to CVS and I have a large tube of the Aquaphor medical ointment that was originally prescribed. My neck is looking a TON better after only 3 days!
So, Tuesday I brought my tech team both an ultimate chocolate cake, and an ultimate white cake. They were in pig heaven. There were hugs all around after the last treatment and I took my lovely Silence of the Lambs mask with me. Tried handing it off to JT yesterday, told him he could use it as target practice when I cheesed him off at work. He said that even HE isn't that evil (yeah, right). But Maynard was standing there and said he wanted it so my mask is now hanging in a place of honor back on the shipping dock. It was making me laugh yesterday every time I walked past it!
And Tuesday at lunch R and Kunkel stopped by with a huge bouquet of absolutely gorgeous flowers and some fun balloons! Yay! Celebration of no more nuking! It was absolutely perfect. I was sitting there thinking okay, in the past I would be drinking, smoking, and eating in celebration of something like this. Since all 3 of those are off the table, I wasn't sure what was left. I did a little softshoe dance in my living room which felt pretty good but the flowers and balloons were the winner of the day. ;-)
Wednesday evening, I doped up on a bunch of pain meds and headed to my friend Kit's retirement party. Today marks her last day of being employed! She's such a lucky, lucky thing! I'm so envious! Anywho, it was a really nice venue at a golf ball and racquet club. The hand passed hors d'oeuvres were killing me. Stuffed mushrooms, crab cakes, coconut shrimp. I'm starving and not only does it hurt too much to eat, but even if it didn't hurt at all to eat, everything tastes like crud anyway due to dead taste buds. UGH! I don't know how much of this I can take!! Phew, okay, back on topic, it was a really sweet get together for Kit. Our county executive, Maggie Brooks, gave an awesome speech and the turnout was spectacular. There are very few people I look up to in life. I view most peeps in my world as equals, but I have to say, Kit is definitely someone I have admired from day one and she continues to impress me with each continuing day that I know her. Meanwhile, I saw a a bunch of the people I used to work with 14 years ago so catching up was a lot of fun. And I was told by all and sundry that I look wonderful! Amazing what dumping 35 pounds can do! Now, if only my inside would heal and match my outside, I'd be all set.
Yesterday was the dentist to get fitted with the fluoride trays. It was a 5 minute in/out thing. I told the dentist all the different things I'm doing in an effort to keep my mouth clean and healthy. Biotyne at night, water pik 3-4 times a day with the salt/baking soda mixture, the warm steam humidifier. She was impressed and said I'm doing an excellent job. So, I just have to wear these trays for 5 minutes twice a day to help with some fluoride treatments and I go back in two months so they can paint a treatment onto my teeth and see where I'm at from a 'tooth health' perspective.
I also got a call from the radiation doc's office yesterday. They had scheduled a follow up appt for me for 11/1. They were calling me to move it up to 10/11 because they were unhappy with how much weight I lost. Whatever. Dr. A can yap at me all she wants, I'm not letting her put a feeding tube in. I'm done letting anyone hurt me for at least the next year. No more procedures. No more cuts. No more poking and prodding. We are now moving forward. The most I will allow done is taking blood and doing the CAT scans. So, I'll go to the appointment, let her charge my insurance some outrageous fee, let her blah, blah, blah wash over me, and then I'm home again, home again.
Which brings us up to today. It's 2:36 am and I'm wide awake, mouthing off in my blog. Sleep is kind of a hit or miss thing. Again, nice working from home just in case I have a night of insomnia and need a nap. Haven't had to take one yet this week but at least I know the option is available. This weekend Patilda is coming up to hang with me again. Play some games, shoot the breeze, and just be with me in general. I was whining to my man-servant last weekend that I've always loved being a solitary person and my alone time is super precious to me but I've noticed over the past few months that I've been getting a little lonely here and there! The horror! Say it isn't so! He said it makes sense because I've been under the weather. He doesn't think anyone out there wants to be alone when they are sick, especially if it's a prolonged occurrence like mine. I guess I'll buy that. I sure hope once my health is back my independence bounces back as well. Being lonely really kind of sucks! I don't recommend it! Thank goodness for visiting friends. :-)
Monday, September 24, 2012
Sept 24 - Okay, I'm still in major pain but my mental attitude is 100x better today than it was on Friday. Only one more zap and then I'm finally free to start recovering from this months long nightmare! Woo hoo! Screw winning the lottery, this is SO much better!
Working at home this week was a stellar idea (Thanks for suggesting it Lis!). I slept until 7:45, got up, took care of the furballs, took all my medicines including my heavy hitter pain meds, and was at my "desk" at 8:02. I also cranked my heat to 70 degrees and put on a tank top so that I can Lubriderm my neck and face every couple of hours and start getting rid of all the peeling and stiffness that's going on with the radiation burns.
Saw the doc for the last time today. She simply rehashed everything that's been said for the past 6 weeks, wished me luck, and told me to call if I need anything.
I'm thinking about buying the tech team an ultimate chocolate cake from Wegman's tomorrow to celebrate never having to see them again. Ha!
That's all for now. Posts will likely be fewer and farther in between from here on out. I'll only chat at you as I discover improvements or see doctors.
Working at home this week was a stellar idea (Thanks for suggesting it Lis!). I slept until 7:45, got up, took care of the furballs, took all my medicines including my heavy hitter pain meds, and was at my "desk" at 8:02. I also cranked my heat to 70 degrees and put on a tank top so that I can Lubriderm my neck and face every couple of hours and start getting rid of all the peeling and stiffness that's going on with the radiation burns.
Saw the doc for the last time today. She simply rehashed everything that's been said for the past 6 weeks, wished me luck, and told me to call if I need anything.
I'm thinking about buying the tech team an ultimate chocolate cake from Wegman's tomorrow to celebrate never having to see them again. Ha!
That's all for now. Posts will likely be fewer and farther in between from here on out. I'll only chat at you as I discover improvements or see doctors.
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