November 30 - Dr. A called this afternoon. She said the scan showed everything to be normal post surgery and post radiation. I asked her if that meant there is no swelling. She said no, there definitely is swelling but there is no cancer re-occurring. I fell out of my chair. I didn't know she was even suspecting it might be the cancer coming back, for crying out loud! Thanks god it's not. Meanwhile, she really wants Dr. C to look at it and give her a second opinion. And she said she's not going to put up with one of his PA's looking at me, she specifically wants HIM to look at me. She's concerned about part of my airway passage being blocked. I guess she tried calling him a few times today but he was in surgery all day so she's going to try again next week and she told me to expect a phone call. Meanwhile she didn't say anything about steroids. She said she thinks the swelling is being caused by the thrush (I disagree but I actually hope she's right and that these lozenges get rid of it!). She asked if I was noticing a difference yet with the lozenges. I told her things were still bleeding when I brush my teeth and there's still a lot of pain. She said okay but are the cottage cheese clusters still on your tongue. I didn't have a good answer. Can't say I've been looking at my tongue. Although I looked at it right after I got off the phone with her and yes, they're still there but hey, it's only been 3 days with the meds and she says it takes 7 to get rid of the thrush. I'm still willing to give it good odds at working! The last thing she said before letting me off the phone was "You had better be eating a ton of calories over there, missy!". I told her I had an eggnog milkshake sitting on my desk right then and there. And it was actually half a milkshake because I had already been sucking it down! She said she wants to hear that I'm eating a milkshake every day instead of every other day. I told her I'd try.
Earlier this week my most complimentary coworker, H, broke my heart. He always has a 'hey beautiful', 'hi gorgeous', or a 'good morning sunshine' for me. Monday morning he took one look at me and said 'hey bony'. He's been given the cold shoulder for the week. Meanwhile, everyone else is telling me how fantastic I look and suddenly the guys are stopping by my desk and inviting me to lunch with them, lending me their juicers, offering to be my movie date once a month......this losing weight thing definitely has some benefits. On the down side, the black satin pants I bought on my Waterloo shopping trip with Sammy for the company holiday lunch in two weeks, no longer fit. I tried them on this week and they're swimming on me. I received a 25% off coupon for Lord & Taylor in the mail today. Looks like next weekend some more shopping needs to take place. This morning the scale said 127.8.
The nurse who inserted the IV for my CAT scan was oohing and ahhing over the scar on my arm. She said she couldn't believe I just had the surgery in July. She claims it looks awesome and that it's the nicest job she has ever seen on that particular surgery. I was telling this to Karen at work and she said that the nurse who took my blood when we had the biometric screening earlier this month had said the exact same thing after I had left the room! I feel like I should swing by the plastic surgeon's office and pass the kudos along to Chrissa. I was so horrified by the surgery site when it first happened that I refused to look at it during the first couple appointments. Chrissa had made a comment jokingly that she was a little hurt because she thought she had done a pretty darned good job. Guess she may have been more serious than joking with that comment and she definitely deserved a little more appreciation than I gave her!
Both our Japanese and Korean service engineers were in town this week along with both my Rochester guys so our boss took us all out to dinner at the Crab Shack (yes, it was my suggestion). I finally got to eat my lobster bisque and thank goodness, it was delicious. My whacked out taste buds didn't screw up that particular flavor which had been worrying me enough to prevent me from going there the past month or so even though I've been craving it. Of course with my walnut sized stomach I only managed 6-7 spoonfuls and then I was stuffed.
I believe that's all the updates for the week. This weekend I'm heading out to a beautiful "log cabin" (I put that in quotes because it's nicer than any house I ever hope to own!) that belongs to my friend Kit and she's going to teach me how to knit the twirly scarves. I'm going to teach her how to play Play 9 and then proceed to trounce her. :-)
Friday, November 30, 2012
Tuesday, November 27, 2012
November 27 - I had quite an action packed doctor's appointment today!
The PA kicked things off by asking how the pain meds were going. I told her what had been going on, about feeling guilty, feeling like I failed, and wanting someone to outline some expectations for me. In short, she said the nurses shouldn't be making me feel bad for requesting refills but she explained their caution. I guess some of their patients in the past have become addicted, the pain meds were cut off too quickly, and bad things happened. She said they're trying to learn from their mistakes. Also, when controlled substances are prescribed for long periods of time, Dr. A is on the hook to give reasonable explanations for it to whatever authority governs this stuff. Lastly, she said that the words 'as needed for pain' were really important and sometimes patients lose sight of that. Patients who are known drinkers might take the meds to get a high equivalent to what they get when drinking (Yes, there was a pointed look here and I grinned.). The whole healing process goes on for such a long amount of time that it's natural for depression to set in and patient's take the meds to help them feel better. And in that same vein, there's a lot of anxiety involved with this whole cancer adventure so patient's take the meds to calm themselves down. In the end, she said that she can't outline expectations because 'everyone is different' (I'm getting really tired of that cop out.) but that it's important to have continuing conversations with Dr. A about my pain levels, to be aware of the reason I'm taking the med (and the only reason should be pain) and that if I need pain medicine, then I need pain medicine and that's that.
Then Dr. A came in and of course, immediately commented on the weight loss. I jumped in and told her about the week of vomiting due to the diflucan. I then mentioned that the thrush was back already (maybe never left) and that I was on the second prescription she gave me but at half the dosage. This sidetracked her quite nicely from the weight loss rant. Turns out half a teaspoon a day doesn't do ANYthing and she doesn't know why the cute little Indian doc had prescribed it like that to me the first time around. I asked her if taking the 'miracle mouthwash' in conjunction with the half teaspoon might have a greater effect. She said not really. She then left the room to call a pharmacist. When she came back she verified that a potential side effect of diflucan to sensitive patients can be nausea and vomiting. (No. Really?) She also said she was gong to try me on something different. Thank god! I am now sucking on (5) clotrimazole lozenges a day. Thrush should be gone in 7 days at which point I can suck on (2) lozenges a day as a maintenance to keep it gone. I have a good feeling about this! I can't wait to see what my mouth feels like without thrush because I'm pretty sure I've had it non-stop for many weeks now!
She asked how the pain meds were holding up with the return of the thrush because the thrush causes its own pain as well as amplifies the pain already in my mouth. I told her I still had a dose or two left and that I'm working on weaning myself off of it per nurse Jane's instructions. I then showed her the little log I've been keeping for the past week and a half. Times range anywhere from 5 hours between doses all the way up to 11.5 hours between doses. She told me that trying to wean was fine but I might want to wait until we get rid of the thrush. She said there's absolutely no reason for me to be walking around in pain. (Why do I feel I keep getting mixed messages?!?) She then wrote out a prescription for 750 ml. This surprised me. I told her that nurse Jane had told me that legally they can't prescribe more than 500 ml. Dr. A said she could prescribe me a liter if she wanted to (although the pharmacist probably wouldn't fill the entire thing in one shot) and she doesn't know why Jane told me that.
She then mentioned that Jane had told her that I often take the pain med at night due to the gagging and she asked me how that was going. I told her that I could still feel my tongue touching the back of my throat 24/7 and that I was concerned that after 8 weeks it still wasn't diminishing. She had me hop up on the table to take a look. As soon as I opened my mouth she said "OH. The thrush really is back with a vengeance!". (Yep.) She then stuck a mirror to the back of my mouth and was shining a flashlight in. She said the passageway looked clear to her and that everything was looking really good from a healing standpoint. So I asked her if maybe I could be imagining it? I don't think I am but maybe there's some kind of phantom tongue phenomenon going on? She said no, she doesn't think I'm imagining it and went ahead and set me up to get a contrast CAT scan done tomorrow. She said the imaging will give her a better view of exactly what's going on in the back of my throat. She said if the scan shows that there IS still some excessive swelling going on, then she wants to put me on steroids. She said it's a bit of a bummer because the thrush will definitely come back if I'm on steroids. (Oh, yay.) I mentioned that the cute little Indian doc had put me on a low dose of those the very first time I complained about the gagging thing during radiation and they didn't seem to help. Dr. A said I would be on a much stronger dose this time and hopefully they WOULD help. If they don't, then she's going to call Dr. C who did the surgery and have him take a look at my throat to see what is going on.
So, lots going on! It was a very take-action type of appointment which felt really good. I feel like I've just been plodding along trying to survive my recovery. Now I have hopes of feeling quite a bit better in a very short time. It put me in a really good mood for the rest of the day! I actually found some energy to run some errands and do some cleaning around the house after work. It's amazing how much a good mindset can effect your life.
I had to reschedule my dentist appointment tomorrow due to the scan appointment. Dr. A said she'll call me by the end of the week to discuss the scan results. As soon as I hear something, I'll let you know!
The PA kicked things off by asking how the pain meds were going. I told her what had been going on, about feeling guilty, feeling like I failed, and wanting someone to outline some expectations for me. In short, she said the nurses shouldn't be making me feel bad for requesting refills but she explained their caution. I guess some of their patients in the past have become addicted, the pain meds were cut off too quickly, and bad things happened. She said they're trying to learn from their mistakes. Also, when controlled substances are prescribed for long periods of time, Dr. A is on the hook to give reasonable explanations for it to whatever authority governs this stuff. Lastly, she said that the words 'as needed for pain' were really important and sometimes patients lose sight of that. Patients who are known drinkers might take the meds to get a high equivalent to what they get when drinking (Yes, there was a pointed look here and I grinned.). The whole healing process goes on for such a long amount of time that it's natural for depression to set in and patient's take the meds to help them feel better. And in that same vein, there's a lot of anxiety involved with this whole cancer adventure so patient's take the meds to calm themselves down. In the end, she said that she can't outline expectations because 'everyone is different' (I'm getting really tired of that cop out.) but that it's important to have continuing conversations with Dr. A about my pain levels, to be aware of the reason I'm taking the med (and the only reason should be pain) and that if I need pain medicine, then I need pain medicine and that's that.
Then Dr. A came in and of course, immediately commented on the weight loss. I jumped in and told her about the week of vomiting due to the diflucan. I then mentioned that the thrush was back already (maybe never left) and that I was on the second prescription she gave me but at half the dosage. This sidetracked her quite nicely from the weight loss rant. Turns out half a teaspoon a day doesn't do ANYthing and she doesn't know why the cute little Indian doc had prescribed it like that to me the first time around. I asked her if taking the 'miracle mouthwash' in conjunction with the half teaspoon might have a greater effect. She said not really. She then left the room to call a pharmacist. When she came back she verified that a potential side effect of diflucan to sensitive patients can be nausea and vomiting. (No. Really?) She also said she was gong to try me on something different. Thank god! I am now sucking on (5) clotrimazole lozenges a day. Thrush should be gone in 7 days at which point I can suck on (2) lozenges a day as a maintenance to keep it gone. I have a good feeling about this! I can't wait to see what my mouth feels like without thrush because I'm pretty sure I've had it non-stop for many weeks now!
She asked how the pain meds were holding up with the return of the thrush because the thrush causes its own pain as well as amplifies the pain already in my mouth. I told her I still had a dose or two left and that I'm working on weaning myself off of it per nurse Jane's instructions. I then showed her the little log I've been keeping for the past week and a half. Times range anywhere from 5 hours between doses all the way up to 11.5 hours between doses. She told me that trying to wean was fine but I might want to wait until we get rid of the thrush. She said there's absolutely no reason for me to be walking around in pain. (Why do I feel I keep getting mixed messages?!?) She then wrote out a prescription for 750 ml. This surprised me. I told her that nurse Jane had told me that legally they can't prescribe more than 500 ml. Dr. A said she could prescribe me a liter if she wanted to (although the pharmacist probably wouldn't fill the entire thing in one shot) and she doesn't know why Jane told me that.
She then mentioned that Jane had told her that I often take the pain med at night due to the gagging and she asked me how that was going. I told her that I could still feel my tongue touching the back of my throat 24/7 and that I was concerned that after 8 weeks it still wasn't diminishing. She had me hop up on the table to take a look. As soon as I opened my mouth she said "OH. The thrush really is back with a vengeance!". (Yep.) She then stuck a mirror to the back of my mouth and was shining a flashlight in. She said the passageway looked clear to her and that everything was looking really good from a healing standpoint. So I asked her if maybe I could be imagining it? I don't think I am but maybe there's some kind of phantom tongue phenomenon going on? She said no, she doesn't think I'm imagining it and went ahead and set me up to get a contrast CAT scan done tomorrow. She said the imaging will give her a better view of exactly what's going on in the back of my throat. She said if the scan shows that there IS still some excessive swelling going on, then she wants to put me on steroids. She said it's a bit of a bummer because the thrush will definitely come back if I'm on steroids. (Oh, yay.) I mentioned that the cute little Indian doc had put me on a low dose of those the very first time I complained about the gagging thing during radiation and they didn't seem to help. Dr. A said I would be on a much stronger dose this time and hopefully they WOULD help. If they don't, then she's going to call Dr. C who did the surgery and have him take a look at my throat to see what is going on.
So, lots going on! It was a very take-action type of appointment which felt really good. I feel like I've just been plodding along trying to survive my recovery. Now I have hopes of feeling quite a bit better in a very short time. It put me in a really good mood for the rest of the day! I actually found some energy to run some errands and do some cleaning around the house after work. It's amazing how much a good mindset can effect your life.
I had to reschedule my dentist appointment tomorrow due to the scan appointment. Dr. A said she'll call me by the end of the week to discuss the scan results. As soon as I hear something, I'll let you know!
Friday, November 23, 2012
November 23 - Thanksgiving, the holiday that highlights the giving of thanks. :-)
I received numerous Turkey Day wishes yesterday, three of which stood out from the rest. Three different friends were specifically thankful to have ME as a friend. How *bleeping* sweet is that? Kind of hard to continue being a Grumpy Gus, which has been my operating mode all week, after getting that extra special love. <3
So, keeping in line with reporting on my health (mostly) in this blog, I paid extra attention today to the improvements that have happened over the past couple of months. Instead of the short and sweet bullet list, I'm going to expand on the points a little:
- I'm really glad the ropey, mucusy saliva crap is pretty much done. It was really gross having to wipe it out with a tissue constantly. And sometimes when I went to talk, my mouth would be all gummed shut and I'd blow a "spit" bubble upon trying to speak. It was SO unattractive. So while I'm still not producing enough spit to masticate and swallow food, I'm supremely happy that the goopy stuff is gone.
- The range of motion in my neck is vastly improved. Looking up is still a little stiff but all the other directions are pretty much back to norm.
- I think the trach scar has faded even more over the past few weeks. I was a little worried that wearing necklaces would draw attention to it but it seems like it will be a non-issue at the rate it's fading.
- It feels so good to be able to close my mouth all the way. I actually ate a baby carrot the other day! Immediately afterwards I had to chug water, ended up choking on a piece, and had to go do the water pik to get the rest of it unglued from the roof of my mouth. But all of that aside, I got to crunch on something! Yay! (And based on all that, I think you can see why I only ate one.)
- I don't even think about the scar on my wrist anymore. I think the car accident when I was 14 helps with that. I already have some serious scars on both legs that I learned to live with so what's one more?
- More and more often I'm sleeping 6-7 hours in a row. Getting some decent sleep helps with mood and energy levels, huge!
- The pain when swallowing is definitely gone. I remember when it was so bad, it was making me cry just to drink water. Heck, even before the surgery, the tumor itself was painful and I had already lost 10 pounds before going to the hospital because the pain curbed my eating.
- I think the mucusitis on my tongue is starting to fade! Maybe. I need to look at it again once the thrush has been banished but I'm pretty sure I noticed an improvement a couple of days ago.
Okay, that's all the good stuff. I'd like to leave it there but it seems like there should be full disclosure.
- The thrush is definitely back in full force. This morning I woke up and my entire tongue was swollen to the point of not being able to talk. The gagging is worse than ever. The mucusitis is "burning" more so than before. AND my tongue started bleeding when I was brushing my teeth this morning which hasn't happened for a while now. I hate thrush. What's worse is that I've been on the meds for 5 days. I'd be fine if I didn't see any improvement yet but things aren't supposed to get worse while on the meds you're taking to fix things, is it?! I wonder if the fact that I'm allergic to a bunch of different antibiotics is making it difficult to prescribe me something that works on clearing this up. I'll have to ask at my appointment on Tuesday.
Meanwhile, taking the 1/2 teaspoon as compared to the full teaspoon definitely did the trick as far as avoiding the nausea/vomiting. So, that's to the good. To the bad, I had been doing well cutting back on the Roxicet and it was going to be no problem making it last until my appointment on Tuesday (which is what Nurse Jane told me I had to do). The full blown thrush made for a very bad day today and now I'm keeping my fingers crossed that the Roxicet lasts until Tuesday. And hopefully she'll refill it! I think I might be getting cut off soon! (I guess I can always drive slowly around my neighborhood with my car alarm going off to let the local drug dealer know that I need to score. And the poker guys didn't think that info would come in handy. Silly them.)
- I've been doing the milkshake every other day. Driving to Micky D's on a daily basis was asking too much of myself. Of course that's probably why I'm still losing weight. Scale today said 128.0. I'm still sucking down smoothies and Carnation drinks too. Because of the the food diary, I had to calculate the calories in the smoothies I've been making. It turns out they only range between 250-300 calories each. So, I'm still working on imbibing as much as possible, it just isn't going fantastically well. I've also tried some other food-foods. Please note the word 'tried', this means I took one, sometimes two bites before giving up. I mentioned the baby carrot above, I also tried some Wegman's homestyle mac and cheese, steamed rice with butter, chicken and rice soup, Mickey D's cheeseburger, fries and apple pie (I couldn't help it, it smelled fantastic!), a sliced and peeled apple with caramel sauce, fresh baked croissant with seafood dip......none of them went over well. They either tasted absolutely disgusting (Mickey D's french fries, much to my horror!) or it was too much trying to chew and swallow them. And after the choking incident yesterday with the carrot, I'm sticking to all liquids again for a while.
- I noticed in the shower today that my hair is still falling out a lot more than normal. I think I read that it's one of the side effects of the thrush medicine. Thank god I have a ton of hair to begin with, otherwise things would be looking pretty ratty right about now.
That's all I have for now. I will report back in after the doc on Tuesday, or maybe after the dentist on Wednesday. It will be good to see how my teeth are doing since radiation can cause you to lose them!
I received numerous Turkey Day wishes yesterday, three of which stood out from the rest. Three different friends were specifically thankful to have ME as a friend. How *bleeping* sweet is that? Kind of hard to continue being a Grumpy Gus, which has been my operating mode all week, after getting that extra special love. <3
So, keeping in line with reporting on my health (mostly) in this blog, I paid extra attention today to the improvements that have happened over the past couple of months. Instead of the short and sweet bullet list, I'm going to expand on the points a little:
- I'm really glad the ropey, mucusy saliva crap is pretty much done. It was really gross having to wipe it out with a tissue constantly. And sometimes when I went to talk, my mouth would be all gummed shut and I'd blow a "spit" bubble upon trying to speak. It was SO unattractive. So while I'm still not producing enough spit to masticate and swallow food, I'm supremely happy that the goopy stuff is gone.
- The range of motion in my neck is vastly improved. Looking up is still a little stiff but all the other directions are pretty much back to norm.
- I think the trach scar has faded even more over the past few weeks. I was a little worried that wearing necklaces would draw attention to it but it seems like it will be a non-issue at the rate it's fading.
- It feels so good to be able to close my mouth all the way. I actually ate a baby carrot the other day! Immediately afterwards I had to chug water, ended up choking on a piece, and had to go do the water pik to get the rest of it unglued from the roof of my mouth. But all of that aside, I got to crunch on something! Yay! (And based on all that, I think you can see why I only ate one.)
- I don't even think about the scar on my wrist anymore. I think the car accident when I was 14 helps with that. I already have some serious scars on both legs that I learned to live with so what's one more?
- More and more often I'm sleeping 6-7 hours in a row. Getting some decent sleep helps with mood and energy levels, huge!
- The pain when swallowing is definitely gone. I remember when it was so bad, it was making me cry just to drink water. Heck, even before the surgery, the tumor itself was painful and I had already lost 10 pounds before going to the hospital because the pain curbed my eating.
- I think the mucusitis on my tongue is starting to fade! Maybe. I need to look at it again once the thrush has been banished but I'm pretty sure I noticed an improvement a couple of days ago.
Okay, that's all the good stuff. I'd like to leave it there but it seems like there should be full disclosure.
- The thrush is definitely back in full force. This morning I woke up and my entire tongue was swollen to the point of not being able to talk. The gagging is worse than ever. The mucusitis is "burning" more so than before. AND my tongue started bleeding when I was brushing my teeth this morning which hasn't happened for a while now. I hate thrush. What's worse is that I've been on the meds for 5 days. I'd be fine if I didn't see any improvement yet but things aren't supposed to get worse while on the meds you're taking to fix things, is it?! I wonder if the fact that I'm allergic to a bunch of different antibiotics is making it difficult to prescribe me something that works on clearing this up. I'll have to ask at my appointment on Tuesday.
Meanwhile, taking the 1/2 teaspoon as compared to the full teaspoon definitely did the trick as far as avoiding the nausea/vomiting. So, that's to the good. To the bad, I had been doing well cutting back on the Roxicet and it was going to be no problem making it last until my appointment on Tuesday (which is what Nurse Jane told me I had to do). The full blown thrush made for a very bad day today and now I'm keeping my fingers crossed that the Roxicet lasts until Tuesday. And hopefully she'll refill it! I think I might be getting cut off soon! (I guess I can always drive slowly around my neighborhood with my car alarm going off to let the local drug dealer know that I need to score. And the poker guys didn't think that info would come in handy. Silly them.)
- I've been doing the milkshake every other day. Driving to Micky D's on a daily basis was asking too much of myself. Of course that's probably why I'm still losing weight. Scale today said 128.0. I'm still sucking down smoothies and Carnation drinks too. Because of the the food diary, I had to calculate the calories in the smoothies I've been making. It turns out they only range between 250-300 calories each. So, I'm still working on imbibing as much as possible, it just isn't going fantastically well. I've also tried some other food-foods. Please note the word 'tried', this means I took one, sometimes two bites before giving up. I mentioned the baby carrot above, I also tried some Wegman's homestyle mac and cheese, steamed rice with butter, chicken and rice soup, Mickey D's cheeseburger, fries and apple pie (I couldn't help it, it smelled fantastic!), a sliced and peeled apple with caramel sauce, fresh baked croissant with seafood dip......none of them went over well. They either tasted absolutely disgusting (Mickey D's french fries, much to my horror!) or it was too much trying to chew and swallow them. And after the choking incident yesterday with the carrot, I'm sticking to all liquids again for a while.
- I noticed in the shower today that my hair is still falling out a lot more than normal. I think I read that it's one of the side effects of the thrush medicine. Thank god I have a ton of hair to begin with, otherwise things would be looking pretty ratty right about now.
That's all I have for now. I will report back in after the doc on Tuesday, or maybe after the dentist on Wednesday. It will be good to see how my teeth are doing since radiation can cause you to lose them!
Friday, November 16, 2012
November 16 - My man-servant recently commented that he's been failing at life for the past couple of months. I know how he feels. I caught a glimpse of myself in the mirror yesterday when I was getting in the shower. Ewwwww. I think I'm starting to look like a concentration camp victim. Although that's probably an exaggeration. I just happen to like a little meat not just on myself, but on people I date as well. It's simply my thing. So, I hopped on the scale this morning even though it's only been 5 days of chugging smoothies. I'm down 3 #%&^%$^ pounds! 130.8! WTF?!? I am now totally freaking out.
JT tried to make me feel better by saying maybe it's an 'off' day for weight. Like maybe I'm dehydrated. I started to feel better, for all of 2 second, thinking I might be able to blame it on fluctuations due to my girly thing but then remembered that the girly thing stopped 2 1/2 months ago. Probably because of the damn weight loss!
So today I started a food diary. I'm going to record everything I eat. I checked out one of those maintain weight calorie calculators. I need to eat 1600 calories a day to maintain my current weight. I also stopped at McDonald's at lunch. They have an eggnog milkshake going on right now. 680 calories. YES! Got me one of those, I'm halfway through it. Not sure I'm a fan of eggnog though.......
I feel like I should go back out on short term disability simply to get my eating back on track. It sounds ridiculous, even to my own ears, but this weight thing is becoming a ginormous concern. Luckily I have all of next week off so I'll be able to concentrate on getting food poured into my body.
Had to call in a refill on the pain meds again yesterday. And yes, I was given a hard time once again. This time Nurse Jane told me that I had to make it last until at least my 11/27 appointment. She said I need to start weaning off of it and using Advil instead. I'm now hoarding the damn stuff.
I also talked to her about the gagging again. I feel like the swelling of my tongue is getting worse rather than better! It turns out Addivan IS a controlled substance (I guess all the good stuff is). She basically told me to talk to Dr. A about it at the next appointment. Meanwhile, I was looking at my tongue this morning. I think I still have thrush. I have little groupings of white dots on my tongue which is what Dr. A told me to look for. Not for nothing, but I don't think the thrush actually went away when I was on that last round of meds. Something to talk to Dr. A about I guess. I COULD call in the backup refill that she placed for me but I refuse to take a teaspoonful a day. I would switch myself back to the half teaspoonful like the first time I was on this med, in the hopes that I could prevent the nausea this time around. ****I just called the pharmacy and asked them to fill the backup refill scrip. After typing that it could be a good idea, I decided to go ahead and implement. Anything that has a chance of making me feel better, I'd rather implement sooner rather than later.
Okay, I need to get my butt back to work for the final 1/2 day before a week of nothing! Woo hoo!
JT tried to make me feel better by saying maybe it's an 'off' day for weight. Like maybe I'm dehydrated. I started to feel better, for all of 2 second, thinking I might be able to blame it on fluctuations due to my girly thing but then remembered that the girly thing stopped 2 1/2 months ago. Probably because of the damn weight loss!
So today I started a food diary. I'm going to record everything I eat. I checked out one of those maintain weight calorie calculators. I need to eat 1600 calories a day to maintain my current weight. I also stopped at McDonald's at lunch. They have an eggnog milkshake going on right now. 680 calories. YES! Got me one of those, I'm halfway through it. Not sure I'm a fan of eggnog though.......
I feel like I should go back out on short term disability simply to get my eating back on track. It sounds ridiculous, even to my own ears, but this weight thing is becoming a ginormous concern. Luckily I have all of next week off so I'll be able to concentrate on getting food poured into my body.
Had to call in a refill on the pain meds again yesterday. And yes, I was given a hard time once again. This time Nurse Jane told me that I had to make it last until at least my 11/27 appointment. She said I need to start weaning off of it and using Advil instead. I'm now hoarding the damn stuff.
I also talked to her about the gagging again. I feel like the swelling of my tongue is getting worse rather than better! It turns out Addivan IS a controlled substance (I guess all the good stuff is). She basically told me to talk to Dr. A about it at the next appointment. Meanwhile, I was looking at my tongue this morning. I think I still have thrush. I have little groupings of white dots on my tongue which is what Dr. A told me to look for. Not for nothing, but I don't think the thrush actually went away when I was on that last round of meds. Something to talk to Dr. A about I guess. I COULD call in the backup refill that she placed for me but I refuse to take a teaspoonful a day. I would switch myself back to the half teaspoonful like the first time I was on this med, in the hopes that I could prevent the nausea this time around. ****I just called the pharmacy and asked them to fill the backup refill scrip. After typing that it could be a good idea, I decided to go ahead and implement. Anything that has a chance of making me feel better, I'd rather implement sooner rather than later.
Okay, I need to get my butt back to work for the final 1/2 day before a week of nothing! Woo hoo!
Monday, November 12, 2012
November 12 - I AM the smoothie queen. Tonight's smoothie was mango, pineapple, kiwi, coconut milk, avocado, cucumber, protein powder, and whole milk. It was a rather unfortunate color, what with all the green stuff, but I just pretended I was celebrating St. Patty's day, and it was all good. ;-P
The avocado was thanks to JBB. She suggested tossing in half of an avocado and some flaxseed oil to ramp up the fat/calorie count in my smoothies. She says they both have very mild flavors, so they're easy to sneak in, while providing Omega 3's and some much needed non-dietetic substance.
I stopped at Wegman's tonight and discovered their Club Pack bags of frozen fruit. I now have two of those babies socked away in the freezer. Should keep me in smoothies for quite some time.
Did not make it to Crab Shack but DID do some food experimenting this past weekend. Saturday was spaghetti. Managed three bites but then had to make a mad dash to the water pik due to it sticking to the roof of my mouth and chugging water was unsuccessful in dislodging it. Sunday was a pancake. Only managed one bite. Meanwhile, the dogs are in 7th heaven eating all of these inedible (by me) dishes.
This coming weekend I'm going to try a pumpkin pie and a cheese pie, sans crusts. I ate both of those items when I was eating soft foods after coming home from the hospital so maybe.....
So, it's Monday, and I weighed in at 133.8 this morning. My goal is to weigh at least that, or maybe 1/2 lb more by next Monday. I'm going to be smoothie crazy this week and see what can be done about this whole weight issue.
Meanwhile, I just need to make it through this week and then I have 9 glorious days of not working. I'm so psyched for the break! Woo hoo!
Improvements:
- I don't think my throat hurts anymore. When my pain meds wear off, it's my tongue that's bothering me, as well as the swelling in my throat, but not actual throat pain.
No Improvements:
- I'm mostly only able to sleep for 3-4 hours at a time.
- Some things taste meh, some things taste okay, some things taste rotten.
- Mucusitis on the good side of my tongue burns.
- 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 3 to 4 times a day to keep my mouth clean.
- I'm still not producing spit.
- Garbled talking.
- Bloated face every morning.
The avocado was thanks to JBB. She suggested tossing in half of an avocado and some flaxseed oil to ramp up the fat/calorie count in my smoothies. She says they both have very mild flavors, so they're easy to sneak in, while providing Omega 3's and some much needed non-dietetic substance.
I stopped at Wegman's tonight and discovered their Club Pack bags of frozen fruit. I now have two of those babies socked away in the freezer. Should keep me in smoothies for quite some time.
Did not make it to Crab Shack but DID do some food experimenting this past weekend. Saturday was spaghetti. Managed three bites but then had to make a mad dash to the water pik due to it sticking to the roof of my mouth and chugging water was unsuccessful in dislodging it. Sunday was a pancake. Only managed one bite. Meanwhile, the dogs are in 7th heaven eating all of these inedible (by me) dishes.
This coming weekend I'm going to try a pumpkin pie and a cheese pie, sans crusts. I ate both of those items when I was eating soft foods after coming home from the hospital so maybe.....
So, it's Monday, and I weighed in at 133.8 this morning. My goal is to weigh at least that, or maybe 1/2 lb more by next Monday. I'm going to be smoothie crazy this week and see what can be done about this whole weight issue.
Meanwhile, I just need to make it through this week and then I have 9 glorious days of not working. I'm so psyched for the break! Woo hoo!
Improvements:
- I don't think my throat hurts anymore. When my pain meds wear off, it's my tongue that's bothering me, as well as the swelling in my throat, but not actual throat pain.
No Improvements:
- I'm mostly only able to sleep for 3-4 hours at a time.
- Some things taste meh, some things taste okay, some things taste rotten.
- Mucusitis on the good side of my tongue burns.
- 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 3 to 4 times a day to keep my mouth clean.
- I'm still not producing spit.
- Garbled talking.
- Bloated face every morning.
Friday, November 9, 2012
November 9th - Have I mentioned that I can no longer laugh? Really. I physically am unable to laugh. I try and a barking, coughing, choking noise happens. Not cool. I can't call my cats inside anymore either because my voice simply doesn't go high enough to do the "here kitty, kitty, kitty" thing. Not sure if these things are permanent or just due to the swelling that's still going on. Hoping for the latter, obviously.
Pudding went down okay. Didn't taste great but didn't taste awful. Chicken broth not so much. Tasted really rank. Much like the butternut squash bisque. Am now making protein smoothies on a daily basis. (Thanks again Andy and Kim!) Hopefully downing one or two of those a day on top of the Carnation and the other odds and ends I'm trying to add in, will eventually lead to some weight stabilization.
I was carrying a case of water from my car to my cubby. Made it to the break room where Leo happened to be. He asked me if I needed help. My normal response would be to roll my eyes, grin, and say no thanks. My response this time around was a grimace and a yes, please. Leo was just as shocked as I was by this response! I'm sorry but that water was bleeping heavy. The doctor warned me that a lot of my weight loss was likely muscle. She's right. I'm now total wussy girl.
I'm trying really hard to cut back on the Roxicet. Unfortunately, I have found that if I don't take it at night, instead of waking up every 3-4 hours, I wake up every hour and a half. I only put up with that for one night. I was then so miserably tired the next day that I decided it's well worth being given a hard time about the prescription refills so long as I'm sleeping at night. Or sleeping as much as I have been for the past handful of months.
Finally hopped on the scale again. I've been avoiding it since all the vomiting. I'm now down to 134.4. I shed some light on what I thought was a myth. A number of years ago I heard that the clothing industry changed the way they sized clothes due to American women being so consistently overweight. I thought it was a bunch of crap up until I went shopping with Sam 2 weekends ago. I was trying on all size 6 and size 8 clothing at the Waterloo Outlet Mall. In fact, I think I bought a pair of size 6 pants. Then I came home and figured that all the size 8 clothes in my skinny closet must fit too. Nope. I tried on 10 different size 8 pants/jeans from my skinny closet and not one of them fit me. They were all still way too small. I guess the clothing industry HAS changed their sizing specs some time in the past 15 years!! How depressing is that?!
Meanwhile, that was 2 weeks ago and more weight has dropped off since then. Wednesday morning I tried on 5 different pairs of pants, trying to get ready for work. They were all swimming on me. Had to once again raid the skinny closet so I could get my ass to work. Wednesday night, everything from the skinny closet was moved upstairs. So now, instead of a skinny closet, I have a fat closet on the main floor and my wearable closet in my bedroom. If I lose any more weight, I will need to break out the credit card once again and head out to do some shopping because I don't have any more clothes in smaller sizes.
That's all the update I have for now. TGIF. I'm looking forward to a quiet weekend of reading books and conducting more food experiments. I've been wanting to head over to the Crab Shack to try their lobster bisque with warm sherry. I'd be super pysched if that actually tastes okay. If it tastes rank though, I'm going to be bummed for ruining my memories of such a super yummy treat. Decisions, decisions.
Pudding went down okay. Didn't taste great but didn't taste awful. Chicken broth not so much. Tasted really rank. Much like the butternut squash bisque. Am now making protein smoothies on a daily basis. (Thanks again Andy and Kim!) Hopefully downing one or two of those a day on top of the Carnation and the other odds and ends I'm trying to add in, will eventually lead to some weight stabilization.
I was carrying a case of water from my car to my cubby. Made it to the break room where Leo happened to be. He asked me if I needed help. My normal response would be to roll my eyes, grin, and say no thanks. My response this time around was a grimace and a yes, please. Leo was just as shocked as I was by this response! I'm sorry but that water was bleeping heavy. The doctor warned me that a lot of my weight loss was likely muscle. She's right. I'm now total wussy girl.
I'm trying really hard to cut back on the Roxicet. Unfortunately, I have found that if I don't take it at night, instead of waking up every 3-4 hours, I wake up every hour and a half. I only put up with that for one night. I was then so miserably tired the next day that I decided it's well worth being given a hard time about the prescription refills so long as I'm sleeping at night. Or sleeping as much as I have been for the past handful of months.
Finally hopped on the scale again. I've been avoiding it since all the vomiting. I'm now down to 134.4. I shed some light on what I thought was a myth. A number of years ago I heard that the clothing industry changed the way they sized clothes due to American women being so consistently overweight. I thought it was a bunch of crap up until I went shopping with Sam 2 weekends ago. I was trying on all size 6 and size 8 clothing at the Waterloo Outlet Mall. In fact, I think I bought a pair of size 6 pants. Then I came home and figured that all the size 8 clothes in my skinny closet must fit too. Nope. I tried on 10 different size 8 pants/jeans from my skinny closet and not one of them fit me. They were all still way too small. I guess the clothing industry HAS changed their sizing specs some time in the past 15 years!! How depressing is that?!
Meanwhile, that was 2 weeks ago and more weight has dropped off since then. Wednesday morning I tried on 5 different pairs of pants, trying to get ready for work. They were all swimming on me. Had to once again raid the skinny closet so I could get my ass to work. Wednesday night, everything from the skinny closet was moved upstairs. So now, instead of a skinny closet, I have a fat closet on the main floor and my wearable closet in my bedroom. If I lose any more weight, I will need to break out the credit card once again and head out to do some shopping because I don't have any more clothes in smaller sizes.
That's all the update I have for now. TGIF. I'm looking forward to a quiet weekend of reading books and conducting more food experiments. I've been wanting to head over to the Crab Shack to try their lobster bisque with warm sherry. I'd be super pysched if that actually tastes okay. If it tastes rank though, I'm going to be bummed for ruining my memories of such a super yummy treat. Decisions, decisions.
Tuesday, November 6, 2012
November 6 - Took a few days but the nausea has finally subsided. Thank God! I actually had a couple of Wegman's bags shoved in my purse when I went to see the Blue Man Group on Saturday because I was so afraid I was going to hurl during the show. I wanted to at least have something to hurl into!
As promised, I just tried uploading a couple of pics of CK, El, and me (5 times!) and Google does not seem to want to cooperate tonight. Sorry folks. If I remember, I'll see if they will attach next post.
Sunday was spent in bed. It was a gloomy, rainy day and the nausea was still hanging on so it seemed like the thing to do.
Yesterday morning I ate a yogurt and it actually stayed down. Woo hoo! I also called the doc to see about getting the Roxicet prescription refilled. Nurse Jane called back and left a message on my home machine instead of calling me at work (not helpful!). Even worse, her message when I finally arrived home at 5:30 and listened to it was "We JUST refilled this for you on 10/26.". UGH! I girded my loins this morning and decided some heads were going to roll because it's a bunch of bullshit that after all the crap I've been through, and am still going through, that these stupid nurses continue to make me feel like I'm trying to pull one over on them when I call for a scrip refill. So today, I spoke with Nurse Jane directly. I went through the math with her and explained that the prescription should have only lasted me 8 days and I had made it last 11 days and asked her why I was being made to feel like I was doing something wrong every time I called in. Unfortunately, my bitchy stance was slightly undercut when I burst into tears on the phone. Yeah, I'm a little down this week. Anywho, she immediately started reassuring me that I wasn't doing anything wrong. She said my math was spot on and that 6 weeks after radiation isn't all that long and she said feeling better is just going to take time, blah, blah, blah. So, I once again have pain meds but I'll bet you dinner that the next time I call in, they're going to make me feel like crap again. Stupid nurses.
Nurse Jane asked if I was really still in that much pain. I told her that during the day I can make it 6-7 hours between doses before my tongue starts burning like crazy. I told her I take it more often at night because I can only sleep for 2-4 hours at a time due to the gagging from my swollen tongue. Taking the Roxicet makes me not notice the tongue touching the back of my throat so much. She asked if I had talked to Dr. A about the swelling. I said yes and Dr. A said it was thrush and put me on medication (that caused extreme vomiting!). Now the thrush is gone, and my tongue is still swollen and touching the back of my throat. I think I'm going to ask Dr. A about getting a scrip for Ativan or something to help me sleep instead of the Roxicet. Unless Ativan is an addictive, controlled substance as well. I don't want to trade one demon for another. But I'm wondering if the Roxicet is causing the swelling........
I experimented with more foods over the past couple of days. It seems like more taste is coming back. Maybe even a little sweet! I drank an iced coffee and actually somewhat enjoyed it! Tried some butternut squash bisque. It had quite a strong flavor but unfortunately, it was not a good flavor. Same thing with the lemon sherbet that I tried. Today I picked up some pudding cups and some chicken broth. They're on the list of things to try next. I'm dying to eat a baked potato with butter and sour cream but with no saliva, foods like that are just too difficult to eat. They become a lump of sawdust stuck to the roof of my mouth that it then takes a half gallon of water to wash down. :-(
Improvements:
- Ropey saliva is getting less prevalent. Now I just wish regular saliva would start showing up.
- Mucus build up is also getting less prevalent. Rarely need to wipe my mouth out with tissues anymore.
- More flavor seems to be coming back in regards to food.
No Improvements:
- Swallowing is painful.
- I'm mostly only able to sleep for 3-4 hours at a time.
- Things still taste pretty gross.
- Mucusitis on the good side of my tongue burns.
- 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 3 to 4 times a day to keep my mouth clean.
- 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.
- Every morning when I wake up, not only do I have fluid buildup in my neck and chin, it's also on my jawline, jowls and cheeks. The lower half of my face is hugely bloated every morning!! The worst of it eventually subsides within an hour or two.
As promised, I just tried uploading a couple of pics of CK, El, and me (5 times!) and Google does not seem to want to cooperate tonight. Sorry folks. If I remember, I'll see if they will attach next post.
Sunday was spent in bed. It was a gloomy, rainy day and the nausea was still hanging on so it seemed like the thing to do.
Yesterday morning I ate a yogurt and it actually stayed down. Woo hoo! I also called the doc to see about getting the Roxicet prescription refilled. Nurse Jane called back and left a message on my home machine instead of calling me at work (not helpful!). Even worse, her message when I finally arrived home at 5:30 and listened to it was "We JUST refilled this for you on 10/26.". UGH! I girded my loins this morning and decided some heads were going to roll because it's a bunch of bullshit that after all the crap I've been through, and am still going through, that these stupid nurses continue to make me feel like I'm trying to pull one over on them when I call for a scrip refill. So today, I spoke with Nurse Jane directly. I went through the math with her and explained that the prescription should have only lasted me 8 days and I had made it last 11 days and asked her why I was being made to feel like I was doing something wrong every time I called in. Unfortunately, my bitchy stance was slightly undercut when I burst into tears on the phone. Yeah, I'm a little down this week. Anywho, she immediately started reassuring me that I wasn't doing anything wrong. She said my math was spot on and that 6 weeks after radiation isn't all that long and she said feeling better is just going to take time, blah, blah, blah. So, I once again have pain meds but I'll bet you dinner that the next time I call in, they're going to make me feel like crap again. Stupid nurses.
Nurse Jane asked if I was really still in that much pain. I told her that during the day I can make it 6-7 hours between doses before my tongue starts burning like crazy. I told her I take it more often at night because I can only sleep for 2-4 hours at a time due to the gagging from my swollen tongue. Taking the Roxicet makes me not notice the tongue touching the back of my throat so much. She asked if I had talked to Dr. A about the swelling. I said yes and Dr. A said it was thrush and put me on medication (that caused extreme vomiting!). Now the thrush is gone, and my tongue is still swollen and touching the back of my throat. I think I'm going to ask Dr. A about getting a scrip for Ativan or something to help me sleep instead of the Roxicet. Unless Ativan is an addictive, controlled substance as well. I don't want to trade one demon for another. But I'm wondering if the Roxicet is causing the swelling........
I experimented with more foods over the past couple of days. It seems like more taste is coming back. Maybe even a little sweet! I drank an iced coffee and actually somewhat enjoyed it! Tried some butternut squash bisque. It had quite a strong flavor but unfortunately, it was not a good flavor. Same thing with the lemon sherbet that I tried. Today I picked up some pudding cups and some chicken broth. They're on the list of things to try next. I'm dying to eat a baked potato with butter and sour cream but with no saliva, foods like that are just too difficult to eat. They become a lump of sawdust stuck to the roof of my mouth that it then takes a half gallon of water to wash down. :-(
Improvements:
- Ropey saliva is getting less prevalent. Now I just wish regular saliva would start showing up.
- Mucus build up is also getting less prevalent. Rarely need to wipe my mouth out with tissues anymore.
- More flavor seems to be coming back in regards to food.
No Improvements:
- Swallowing is painful.
- I'm mostly only able to sleep for 3-4 hours at a time.
- Things still taste pretty gross.
- Mucusitis on the good side of my tongue burns.
- 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 3 to 4 times a day to keep my mouth clean.
- 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.
- Every morning when I wake up, not only do I have fluid buildup in my neck and chin, it's also on my jawline, jowls and cheeks. The lower half of my face is hugely bloated every morning!! The worst of it eventually subsides within an hour or two.
Friday, November 2, 2012
November 2 - Pride is one of the 7 sins, isn't it?
I was put back in my place after being so proud of eating a yogurt, by being up at 2 AM the following morning, dry heaving for a full 5 minutes. Quite an unpleasant experience. So, I stuck to the Carnation drinks on Wednesday and then decided to try out the juicer last night.
Turns out I'm not a fan of the juicer. My experiment last night included 2 oranges, 2 small honey crisp apples, and a handful of raspberries. The juice comes out a little thicker in texture than I'm mentally ready to deal with. Not to mention fruits are very acidic so my tongue was unhappy with me for testing it last night. Plus the cleanup on the equipment was a pain in the butt. And it seems like there's not a lot of bang for the buck given how expensive fruit is. All in all, I've decided to stick with my smoothies. It was definitely a fun experience testing out Messner's juicer though and hey, he saved me $70 because I now took mine off my Amazon shopping list!
So last night's smoothie was 2 bananas, a snack size container of pineapple tidbits, 5 ice cubes, a glug of coconut milk, a glug of apple juice, and a glug of regular milk. It was pretty yummy although the bananas were not quite ripe enough. I hate that Wegman's only ever has green bananas so you have to know 3 days in advance if you're going to need one. Anywho......I was up at 4 AM this morning, dry heaving my poor, little guts out. WTH?!?
I've been feeling nauseous off and on for over a week now. Kept thinking I was maybe coming down with something. Then after this morning's second dry heave experience I decided that maybe it's just my body rejecting real food although I was feeling nauseous before I started trying to eat real food. Luckily, Kunkel came to my rescue today. She asked what the side effects were of the medicine I'm on for thrush. It hadn't occurred to me that it could be the culprit because there was no nausea the last time I was taking it. Then I remembered that I'm taking double the dose in a shorter time period which could make a difference. Sure enough, Kunkel Googled it for me right then and there and the number one side effect of fluconazole is nausea and vomiting! It's such a relief to know what the problem is! Happily, today was my last dose of that stuff so hopefully the nausea will clear up over the weekend. I will resume trying to eat on Monday.
So, no pictures for this post. Based on what was being discussed, I'm sure you're all relieved by that. ;-P Tomorrow I'm heading out to see the Blue Man Group with Kunkel and Elvisa. Should be a blast and I'll def have some photo opportunities there to share in the next post!
I was put back in my place after being so proud of eating a yogurt, by being up at 2 AM the following morning, dry heaving for a full 5 minutes. Quite an unpleasant experience. So, I stuck to the Carnation drinks on Wednesday and then decided to try out the juicer last night.
Turns out I'm not a fan of the juicer. My experiment last night included 2 oranges, 2 small honey crisp apples, and a handful of raspberries. The juice comes out a little thicker in texture than I'm mentally ready to deal with. Not to mention fruits are very acidic so my tongue was unhappy with me for testing it last night. Plus the cleanup on the equipment was a pain in the butt. And it seems like there's not a lot of bang for the buck given how expensive fruit is. All in all, I've decided to stick with my smoothies. It was definitely a fun experience testing out Messner's juicer though and hey, he saved me $70 because I now took mine off my Amazon shopping list!
So last night's smoothie was 2 bananas, a snack size container of pineapple tidbits, 5 ice cubes, a glug of coconut milk, a glug of apple juice, and a glug of regular milk. It was pretty yummy although the bananas were not quite ripe enough. I hate that Wegman's only ever has green bananas so you have to know 3 days in advance if you're going to need one. Anywho......I was up at 4 AM this morning, dry heaving my poor, little guts out. WTH?!?
I've been feeling nauseous off and on for over a week now. Kept thinking I was maybe coming down with something. Then after this morning's second dry heave experience I decided that maybe it's just my body rejecting real food although I was feeling nauseous before I started trying to eat real food. Luckily, Kunkel came to my rescue today. She asked what the side effects were of the medicine I'm on for thrush. It hadn't occurred to me that it could be the culprit because there was no nausea the last time I was taking it. Then I remembered that I'm taking double the dose in a shorter time period which could make a difference. Sure enough, Kunkel Googled it for me right then and there and the number one side effect of fluconazole is nausea and vomiting! It's such a relief to know what the problem is! Happily, today was my last dose of that stuff so hopefully the nausea will clear up over the weekend. I will resume trying to eat on Monday.
So, no pictures for this post. Based on what was being discussed, I'm sure you're all relieved by that. ;-P Tomorrow I'm heading out to see the Blue Man Group with Kunkel and Elvisa. Should be a blast and I'll def have some photo opportunities there to share in the next post!
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