August 31 - Another week of radiation is done. Last week I celebrated with cookies. This week it was cannolis. I'm not eating these yummy treats, of course, I'm bringing them to my radiation tech team. I told them since I am unable to eat anything, they have to do the celebrating for me. Needless to say, they're happy to oblige. :-)
So, I did it to myself again. Although the cheesy rice sounded good and I was out of pain due to the numbing gel, I once again forgot that everything tastes like metallic black pepper. My poor body is just not adjusting to this situation! I walk around hungry. Food looks really good. Food smells fantastic. But the moment it hits my mouth, it's not only disappointing, it's actually pretty disgusting. I was telling a friend that when I had the trach in, I had to reach up and cover it whenever I wanted to talk or needed to cough. I was still reaching up to cover it two weeks after it had healed over. It amused me that I trained into a habit so fast. Luckily, I trained myself right back out of it. So I don't understand why I'm struggling with the good smell/bad taste thing. I'm guessing senses are harder to re-train than repetitive actions??
I'm also wondering what my eating habits are going to be like when all is said and done. I've been eating very small quantities, extremely slowly for months on end now. Am I going to continue that and keep the weight off or am I going to binge, binge, binge and inhale everything in sight for months on end once everything is back to norm? I was telling JT this morning that I have hit a new low. I was playing a game on my computer where you have to assemble ingredients, cook food, and serve your customers before time runs out and it was making me absolutely famished! If my saliva glands were working there would have been a puddle on the computer desk. Things have gotten pretty sad when even cartoon food can illicit such a response.
Work was much better today with the numbing gel in hand. Although the gel only worked so long as I didn't talk. The moment I started talking, my tongue would rub against my teeth and the pain was excruciating! Lis hung a sign in my cubby that says "Don't talk to me, I'm in stealth mode.". She said to just point at it when coworkers pop over and expect verbal responses from me.
When you get ex-rays at the dentist, they drape a lead apron over you. I've noticed that I have nothing of the sort during the radiation treatments. I asked my tech team yesterday if they were secretly sterilizing me. Mind you, I wouldn't care in the least, my baby making years have passed me by and I'm happy to go to the grave without helping to populate the earth, I was just curious. Turns out the equipment they use is so high tech, there is zero scatter from the rays. They said they could stand in the room right next to me during treatments and they would not be affected. This made me wonder why there is a 2 foot thick door that they close every time they leave the room before starting my treatment but whatever. Sometimes you just need to smile and nod to get through life. ;-P
I'm off to bed and I plan to spend my 3 day weekend resting and relaxing as much as possible. (Might do a little shoe shopping too but we'll see.) Everyone have fun and be safe. Talk at you on Tuesday!
Friday, August 31, 2012
Thursday, August 30, 2012
August 30 - Okay, today's focus is pain management.
I'm having a hard time at work. I pop Advil all day long but it doesn't really touch the pain and I've been skating out of work half an hour early just so I can get home and take the Vicodin.
My tongue feels like someone took a cheese grater to it. I don't even want to talk because when you talk, your tongue rubs up against your teeth and it really, bleeping, hurts! There has been a lot of nodding and hand signals going on in my work life this week.
Meanwhile, the Vicodin is weird. It doesn't actually relieve the pain it just makes my brain go all fluffy and wonky so that I'm not really concentrating on the pain. It's the oddest thing and I'm not really liking it.
BTW: The warm mist setting on the humidifier is much more effective and nights are slightly better.
So, I asked to speak to a nurse today when I went in for radiation to find out what can be done before I take a knife and just hack my entire tongue out of my head. I told her what was going on and stated that there had to be something I could take that was stronger than Advil but not on the level of Vicodin. I explained to her that I needed to be functional to put in a full day of work. She was shocked that I'm back to work full time and asked if I was planning on working full time throughout the course of the radiation. I told her that I sure as hell hoped so, I have a mortgage to pay for crying out loud. Meanwhile, I steered her back to my question at which point she veered off and started asking me how eating was going. I told her I was just drinking, not eating. She then asked why I do not have the feeding tube in my stomach and started talking about making an appointment to get it put in. I had a heart attack on her and told her that Dr. A felt that I could get by without it and that I was working really hard to meet that expectation. I told her that if I have any goal throughout the radiation, then the goal is to avoid the feeding tube. Ugh! The convo with this woman was seriously stressing me out! Once again, we got back on the topic of meds. She didn't seem to think there was a medication stronger than Advil but weaker than Vicodin which I have to say, I was a little taken aback by. Really? There's absolutely nothing on the spectrum between those 2 meds as far as pain relief goes?? Anywho, she finally stepped out of the room and came back with a numbing gel that I can paint onto my tongue.
And I was just in the bathroom putting it on and oh baby.....sweet relief.........how I love you so.
I am so astounded by this new development that I think I'm going to make myself some cheesy rice and see if I can manage to eat a little real food while my tongue is numb. How exciting! Tune in next time and I'll tell you how it went!
I'm having a hard time at work. I pop Advil all day long but it doesn't really touch the pain and I've been skating out of work half an hour early just so I can get home and take the Vicodin.
My tongue feels like someone took a cheese grater to it. I don't even want to talk because when you talk, your tongue rubs up against your teeth and it really, bleeping, hurts! There has been a lot of nodding and hand signals going on in my work life this week.
Meanwhile, the Vicodin is weird. It doesn't actually relieve the pain it just makes my brain go all fluffy and wonky so that I'm not really concentrating on the pain. It's the oddest thing and I'm not really liking it.
BTW: The warm mist setting on the humidifier is much more effective and nights are slightly better.
So, I asked to speak to a nurse today when I went in for radiation to find out what can be done before I take a knife and just hack my entire tongue out of my head. I told her what was going on and stated that there had to be something I could take that was stronger than Advil but not on the level of Vicodin. I explained to her that I needed to be functional to put in a full day of work. She was shocked that I'm back to work full time and asked if I was planning on working full time throughout the course of the radiation. I told her that I sure as hell hoped so, I have a mortgage to pay for crying out loud. Meanwhile, I steered her back to my question at which point she veered off and started asking me how eating was going. I told her I was just drinking, not eating. She then asked why I do not have the feeding tube in my stomach and started talking about making an appointment to get it put in. I had a heart attack on her and told her that Dr. A felt that I could get by without it and that I was working really hard to meet that expectation. I told her that if I have any goal throughout the radiation, then the goal is to avoid the feeding tube. Ugh! The convo with this woman was seriously stressing me out! Once again, we got back on the topic of meds. She didn't seem to think there was a medication stronger than Advil but weaker than Vicodin which I have to say, I was a little taken aback by. Really? There's absolutely nothing on the spectrum between those 2 meds as far as pain relief goes?? Anywho, she finally stepped out of the room and came back with a numbing gel that I can paint onto my tongue.
And I was just in the bathroom putting it on and oh baby.....sweet relief.........how I love you so.
I am so astounded by this new development that I think I'm going to make myself some cheesy rice and see if I can manage to eat a little real food while my tongue is numb. How exciting! Tune in next time and I'll tell you how it went!
Tuesday, August 28, 2012
August 28 - Well, I can tell that the humidifier was working and working well because I could feel the moisture in the air when I went upstairs last night and my sheets were a bit on the clammy side. Unfortunately, I had my worst night so far in regards to my mouth. I woke up at 3:00 am and it felt like I had stuck my tongue in a blender. I laid there for 30 minutes analyzing the pain. I finally decided that Advil was just not going to cut it so I broke the seal on the liquid Vicodin. Took 30 minutes to kick in but once it did, I slept like a rock until my alarm went off. That might be my new bedtime plan. Although last night I was using the cool mist setting on the humidifier. Tonight I'm going to try the warm mist setting and see if that makes any difference whatsoever.
I was reading my Ensure Plus bottle this morning as I was drinking my breakfast. It made me laugh. It specifically calls out that it is meant to help a person maintain or gain weight. Such a 180 from the past 5 years when I've been struggling to lose weight! It just strikes me as funny. :-)
Okay, I'm off to radiate, then I can cut a link from my paper chain!
I was reading my Ensure Plus bottle this morning as I was drinking my breakfast. It made me laugh. It specifically calls out that it is meant to help a person maintain or gain weight. Such a 180 from the past 5 years when I've been struggling to lose weight! It just strikes me as funny. :-)
Okay, I'm off to radiate, then I can cut a link from my paper chain!
Monday, August 27, 2012
August 27 - Saw the doc again today since Monday is my normal day to check in with her. She asked me if the medicine was helping the thrush at all. I actually sat there and did a little verbal list as I was thinking it through. Tongue is still bleeding at the slightest provocation, swallowing still EXTREMELY painful, mouth full of this phlemgy goo that makes it really unpleasant to talk..........um, yeah, no......haven't noticed the medicine helping at all! So, she got out her head lamp and checked things out for herself. She agreed that it wasn't any better after 3 full days on the meds so tonight I have a new mouthwash that I'm using.
Have I mentioned that everything tastes like black pepper?? Split pea soup, chocolate peanut butter ice cream, the medicated mouthwash, you name it.........it all tastes like pepper. Bleah.
I told the doc on Friday that on TV, people are always talking about what stage cancer they have but I never found out what stage cancer mine was. She told me that she would have to review my pathology report and then she could let me know. Today, she gave me a copy of the pathology report and went over it with me. Everything that she mentioned had been told to me previously but I think that she wanted to give me a ton of reassurances about all the good things in the report before she got to the fact that it was a stage 4 cancer. An early, stage 4, squamous cell carcinoma, mind you. Which I'm assuming is better than a late stage. ;-P
JT suggested today that I make a paper chain where each link represents a day so that I can count down to the end of radiation by removing a link when I get back from the radiation appointment. Cool idea. It's now hanging in my cubby at work.
My new humidifier finally arrived today. I just set it up in the bedroom and it is happily blowing cool mist all over the place. Hopefully, when I go to bed in an hour, sleep will be slightly more comfortable.
Got lots of hugs from Patilda this past weekend. Also managed to eat a cup of bisque at the Crab Shack where I took her for her birthday dinner. Since jumping back into the full liquid diet without so much as a how-do-you-do, I had a fridge full of food that was going to wind up in the garbage. Packed it all into a cooler and sent it home with her instead. Phew. I feel so guilty when I toss food!
Tomorrow night is a milkshake/smoothie date with Kit. Woo hoo!
Have I mentioned that everything tastes like black pepper?? Split pea soup, chocolate peanut butter ice cream, the medicated mouthwash, you name it.........it all tastes like pepper. Bleah.
I told the doc on Friday that on TV, people are always talking about what stage cancer they have but I never found out what stage cancer mine was. She told me that she would have to review my pathology report and then she could let me know. Today, she gave me a copy of the pathology report and went over it with me. Everything that she mentioned had been told to me previously but I think that she wanted to give me a ton of reassurances about all the good things in the report before she got to the fact that it was a stage 4 cancer. An early, stage 4, squamous cell carcinoma, mind you. Which I'm assuming is better than a late stage. ;-P
JT suggested today that I make a paper chain where each link represents a day so that I can count down to the end of radiation by removing a link when I get back from the radiation appointment. Cool idea. It's now hanging in my cubby at work.
My new humidifier finally arrived today. I just set it up in the bedroom and it is happily blowing cool mist all over the place. Hopefully, when I go to bed in an hour, sleep will be slightly more comfortable.
Got lots of hugs from Patilda this past weekend. Also managed to eat a cup of bisque at the Crab Shack where I took her for her birthday dinner. Since jumping back into the full liquid diet without so much as a how-do-you-do, I had a fridge full of food that was going to wind up in the garbage. Packed it all into a cooler and sent it home with her instead. Phew. I feel so guilty when I toss food!
Tomorrow night is a milkshake/smoothie date with Kit. Woo hoo!
Friday, August 24, 2012
August 24 - Soooooo, it turns out that I am not experiencing radiation side effects earlier than expected. My problem is that I have thrush. I mentioned to my tech team that I was running a low grade fever last night and that there's something currently going around the office, and how bummed I'm going to be if I get sick on top of having to endure radiation. As soon as they heard the word fever, they whisked me off to the doc, who took one look in my mouth, and whipped out her prescription pad. I guess thrush is common for this type of radiation. It's basically a yeast infection inside your mouth. Yet another little nugget of knowledge that is now permanently imbedded in my brain, much to my dismay. So, I'm swishing and swallowing some special mouth stuff 4x a day for the next two weeks.
Since I had the doctor's attention, I decided to assault her with some other questions that have been building up.
My tongue has started bleeding profusely when I brush my teeth. Why? Turns out this is also the fault of thrush. She told me to stop using my vibrating toothbrush and to switch to a soft toothbrush with a small head.
The capris I wore yesterday seemed looser than they should. I hopped on the scale this morning and I've dropped 4 pounds this week. I immediately had a heart attack. As mentioned yesterday, I'm ingesting as many calories as I can to avoid the dreaded stomach feeding tube! So, I asked what the weight loss would need to be in order for them to wisk me to the hospital and implant the nightmarish thing. The doctor immediately replied that I would need to lose 10 pounds in one week for that to happen. Phew! At least I can stop spazzing out about that and I loved that she had such a concrete answer so readily available!
I don't remember if I mentioned it before but last week the techs would leave the room and the radiation would start. This week the techs leave the room, there's a 2-3 minute wait, and then the radiation starts. I asked the tech team earlier this week what was going on. They said instead of taking pictures twice a week, they were now taking them every day. I asked the doc why that suddenly changed and if I should be worried. She said taking pictures every day is the normal thing to do and she's not sure why the head radiation doc only had me down for 2 days when my treatment first started.
I asked if there was any chance of radiation ending sooner than 6-7 weeks. She said my treatments aren't really fighting anything, they're post surgery to prevent future stuff, so no, the treatment run they are giving me is the standard run for this type of cancer.
On the bright side, she told me my treatments end on 9/25. I now have a date to count down to!
I used the Biotene a couple of times last night. Seems to help but it's hard to suppress the gag reflex because really, it's synthetic spit that I'm putting in my mouth and I can tell!
I tracked my humidifier. It's supposed to be here by next Tuesday. I am eagerly awaiting its arrival.
Okeydoke, I took a half day today. I'm going to go force myself to eat something and then I'm crawling into bed for a nap. It's been a long week.
Since I had the doctor's attention, I decided to assault her with some other questions that have been building up.
My tongue has started bleeding profusely when I brush my teeth. Why? Turns out this is also the fault of thrush. She told me to stop using my vibrating toothbrush and to switch to a soft toothbrush with a small head.
The capris I wore yesterday seemed looser than they should. I hopped on the scale this morning and I've dropped 4 pounds this week. I immediately had a heart attack. As mentioned yesterday, I'm ingesting as many calories as I can to avoid the dreaded stomach feeding tube! So, I asked what the weight loss would need to be in order for them to wisk me to the hospital and implant the nightmarish thing. The doctor immediately replied that I would need to lose 10 pounds in one week for that to happen. Phew! At least I can stop spazzing out about that and I loved that she had such a concrete answer so readily available!
I don't remember if I mentioned it before but last week the techs would leave the room and the radiation would start. This week the techs leave the room, there's a 2-3 minute wait, and then the radiation starts. I asked the tech team earlier this week what was going on. They said instead of taking pictures twice a week, they were now taking them every day. I asked the doc why that suddenly changed and if I should be worried. She said taking pictures every day is the normal thing to do and she's not sure why the head radiation doc only had me down for 2 days when my treatment first started.
I asked if there was any chance of radiation ending sooner than 6-7 weeks. She said my treatments aren't really fighting anything, they're post surgery to prevent future stuff, so no, the treatment run they are giving me is the standard run for this type of cancer.
On the bright side, she told me my treatments end on 9/25. I now have a date to count down to!
I used the Biotene a couple of times last night. Seems to help but it's hard to suppress the gag reflex because really, it's synthetic spit that I'm putting in my mouth and I can tell!
I tracked my humidifier. It's supposed to be here by next Tuesday. I am eagerly awaiting its arrival.
Okeydoke, I took a half day today. I'm going to go force myself to eat something and then I'm crawling into bed for a nap. It's been a long week.
Thursday, August 23, 2012
August 23 - Well, things have gone downhill pretty fast this week.
- Waking up with a mouthful of mucus and gagging - Check
- Severely sore throat making swallowing extremely difficult - Check
- Voice going hoarse - Check
- Food tasting like dirt - Check
- Neck and face turning red and sunburnt looking - Check
What they don't tell you is that the gagging is not just limited to the morning. I've been gagging throughout the day as well. I finally stopped at Wegman's today to buy that mouthwash the doctor told me about. I'll try it after lunch and see if it helps at all.
They also don't tell you that not only does food taste like crap and your throat (and tongue!) hurt too much to eat anyway, but because you're not really producing saliva, when you eat, chewing (or whatever passes for chewing nowadays) the food releases all moisture and then you have a dried out glob of something that's stuck to the roof of your mouth and couldn't swallow if your life depended on it!
And yes, as you can probably tell, this is going to be a grumpy post rather than a good humored one. My apologies. Thank goodness Patilda is coming to visit me this weekend. I have never needed a hug so bad in my life.
Anywho, I've decided that I'm back on a full liquid diet. I made myself what I can only assume was a yummy fruit smoothie this morning with some protein powder. Damned if I'm going to risk having to get a feeding tube inserted in my stomach!
And I need to submit a correction. I complained in the last post that my POS humidifier wasn't doing anything. Well, I forgot to turn it on Tuesday night and it turns out it HAS been helping somewhat! Just wanted to give kudos where they were deserved. Meanwhile, I still haven't seen my new humidifier. I need to hop on-line and track that baby.
That's all I have on the health front issue but I do have one funny today. I burned a CD with some top 40 pop songs and brought it with me on Tuesday. The tech team (2 gals, 2 guys, all young) popped it in and as soon as they heard the first song they totally cranked it and at least 2, possibly 3 of them were singing along with it and dancing while they were clamping me to the table. It was so hard not to laugh! I felt like I was suddenly transported into a really strange music video! I'm bringing them cookies tomorrow. Anyone that can make me laugh right now deserves to be rewarded.
- Waking up with a mouthful of mucus and gagging - Check
- Severely sore throat making swallowing extremely difficult - Check
- Voice going hoarse - Check
- Food tasting like dirt - Check
- Neck and face turning red and sunburnt looking - Check
What they don't tell you is that the gagging is not just limited to the morning. I've been gagging throughout the day as well. I finally stopped at Wegman's today to buy that mouthwash the doctor told me about. I'll try it after lunch and see if it helps at all.
They also don't tell you that not only does food taste like crap and your throat (and tongue!) hurt too much to eat anyway, but because you're not really producing saliva, when you eat, chewing (or whatever passes for chewing nowadays) the food releases all moisture and then you have a dried out glob of something that's stuck to the roof of your mouth and couldn't swallow if your life depended on it!
And yes, as you can probably tell, this is going to be a grumpy post rather than a good humored one. My apologies. Thank goodness Patilda is coming to visit me this weekend. I have never needed a hug so bad in my life.
Anywho, I've decided that I'm back on a full liquid diet. I made myself what I can only assume was a yummy fruit smoothie this morning with some protein powder. Damned if I'm going to risk having to get a feeding tube inserted in my stomach!
And I need to submit a correction. I complained in the last post that my POS humidifier wasn't doing anything. Well, I forgot to turn it on Tuesday night and it turns out it HAS been helping somewhat! Just wanted to give kudos where they were deserved. Meanwhile, I still haven't seen my new humidifier. I need to hop on-line and track that baby.
That's all I have on the health front issue but I do have one funny today. I burned a CD with some top 40 pop songs and brought it with me on Tuesday. The tech team (2 gals, 2 guys, all young) popped it in and as soon as they heard the first song they totally cranked it and at least 2, possibly 3 of them were singing along with it and dancing while they were clamping me to the table. It was so hard not to laugh! I felt like I was suddenly transported into a really strange music video! I'm bringing them cookies tomorrow. Anyone that can make me laugh right now deserves to be rewarded.
Monday, August 20, 2012
August 20 - Okay, still tired. I wake up a few times a night all dried out so I drink some water. Then, because I have the world's smallest bladder, I am up a couple of more times to use the facilities. This isn't going well. My cheapo POS humidifier doesn't seem to be doing a darned thing. I have a new one arriving tomorrow that has both hot and cold misters as well as two adjustable nozzles so you can point the mist wherever you want. We'll see if that does anything. Meanwhile I talked to the doc today. She pointed me in the direction of a moistening mouthwash called Biotene. Instead of gulping water, she said to try rinsing with this stuff instead. It's on my list to track it down tomorrow.
Meanwhile I'm so tired that I'll be in mid-sentence and totally blank on what I was saying. Or I won't remember what word I had wanted to use. It's driving me nuts!
On the bright side, my upper back/lower shoulders stopped aching. Stupid girl shoes. I should burn them all!
I finally sat down and read the literature that was sent home with me about radiation side effects. It was all repeats of what I knew except for one of the paragraphs. I guess my voice could go temporarily hoarse due to my vocal chords getting burned by the radiation. I'm supposed to stop talking if that happens. Man, the guys at work are going to LOVE that!
Meanwhile, another side effect was food starting to taste bad. Some people say it starts tasting like metal, others say it just tastes off. Well, I nuked up some of my homemade seafood bisque on Saturday and 3 bites in I had to dump it. It simply did not taste good at all. To be fair though, I'm not sure if that's the radiation or my cooking! Ha!
I forgot to put on a bandage or a 'sleeve' on my lovely arm scar yesterday after my shower and then I went out in public. I felt nekkid! Although I then thought that I should probably let it breathe for a couple of days so I didn't wear anything on it today either. Was hyper aware of it all day though so I'll probably be back to covering it up tomorrow.
I've decided that I should have hired myself a man-servant ages ago! Below is Jamie hard at work in the back yard.
I, of course, have the incredibly hard job of overseeing his activities......
That's all the update I have for now. I told the radiation techs that I think the country music they force me to listen to during my treatments is going to kill me long before cancer does! I am now allowed to bring a CD of music in with me that they will play. I'm off to burn some Rhianna, Carly Rae Jepson, Katy Perry, Kelly Clarkson.........
Meanwhile I'm so tired that I'll be in mid-sentence and totally blank on what I was saying. Or I won't remember what word I had wanted to use. It's driving me nuts!
On the bright side, my upper back/lower shoulders stopped aching. Stupid girl shoes. I should burn them all!
I finally sat down and read the literature that was sent home with me about radiation side effects. It was all repeats of what I knew except for one of the paragraphs. I guess my voice could go temporarily hoarse due to my vocal chords getting burned by the radiation. I'm supposed to stop talking if that happens. Man, the guys at work are going to LOVE that!
Meanwhile, another side effect was food starting to taste bad. Some people say it starts tasting like metal, others say it just tastes off. Well, I nuked up some of my homemade seafood bisque on Saturday and 3 bites in I had to dump it. It simply did not taste good at all. To be fair though, I'm not sure if that's the radiation or my cooking! Ha!
I forgot to put on a bandage or a 'sleeve' on my lovely arm scar yesterday after my shower and then I went out in public. I felt nekkid! Although I then thought that I should probably let it breathe for a couple of days so I didn't wear anything on it today either. Was hyper aware of it all day though so I'll probably be back to covering it up tomorrow.
I've decided that I should have hired myself a man-servant ages ago! Below is Jamie hard at work in the back yard.
I, of course, have the incredibly hard job of overseeing his activities......
That's all the update I have for now. I told the radiation techs that I think the country music they force me to listen to during my treatments is going to kill me long before cancer does! I am now allowed to bring a CD of music in with me that they will play. I'm off to burn some Rhianna, Carly Rae Jepson, Katy Perry, Kelly Clarkson.........
Friday, August 17, 2012
August 17 - I'm a big fan of the TGIF saying but I have to say, it's a little more heartfelt today than usual. It has been a somewhat long week back to work and I'm looking forward to being a total blob this weekend.
I think there are a few different parts to my tiredness:
1. I'm back to work for 9 hours a day after 6 weeks of laying on my couch doing nothing. I'm sure the uptick in activity has surprised my lazy ass.
Note: I will be taking a work laptop home with me tonight and finding it a spot in my computer room. I'll feel better once I know things are in place just in case I can't make it through a work day/week.
2. I haven't been sleeping very well. I seem to be a bit stressed about the effects of the radiation. If they told me they were going to zap me and it would make my hair fall out, I could process that info, accept it, and move on. The fact that I have been told there are 30 different potential side effects that could be anywhere from mild to severe, and nobody really knows what it will be for me, because everyone is different........well, the control freak side of me is not at all happy with that. I may have been a bit surprised by how abrasive and brutal the ENT surgeon was the first time I saw him but at least he laid things out in black and white and I knew exactly what was coming down the chute. And I know worrying and stressing about things isn't going to change them but unfortunately, I can't seem to find the magic button that will turn my brain off and stop me from thinking about the next 4 months.<sigh>
3. The radiation might already be zapping energy although I was told I wouldn't really feel it until 2-3 weeks in so I'm not leaning towards this reason.
So yes, there WERE 16 beepy alarms. Counting wasn't all that distracting though. I've moved on to thinking about more pleasant things like what I can add to my Amazon wishlist or even better, daydreaming about the land I want to buy. Unfortunately, two e-mails to that realtor have not solicited a response. Guess I need to keep looking.
My handyman started work last night. I now have Skyping ability on my computer, my siding has been power washed to a sparkly state, and the rusty laundry pole in the backyard has been almost completely dug up. So far he's just my handyman and not my housekeeping person. My strategy during the week has been to clean one room in my house each day. I'm hoping if I can break it up into small bites like that each day, I will stay on top of things throughout radiation and not get into a downward spiral to living in a pig sty. Fingers crossed!
The only other health related comment is that my upper back/lower shoulders really ache! When I'm walking I can feel each step vibrating through me and causing me pain. Not sure if this is because I totally dolled up all week and I'm not used to wearing heels 4 days in a row, or if the tossing and turning at night is causing uncomfortable sleeping conditions, or what the issue is. This was certainly not one of the possible side effects of radiation that was mentioned to me so hopefully it's something I can fix!
I think there are a few different parts to my tiredness:
1. I'm back to work for 9 hours a day after 6 weeks of laying on my couch doing nothing. I'm sure the uptick in activity has surprised my lazy ass.
Note: I will be taking a work laptop home with me tonight and finding it a spot in my computer room. I'll feel better once I know things are in place just in case I can't make it through a work day/week.
2. I haven't been sleeping very well. I seem to be a bit stressed about the effects of the radiation. If they told me they were going to zap me and it would make my hair fall out, I could process that info, accept it, and move on. The fact that I have been told there are 30 different potential side effects that could be anywhere from mild to severe, and nobody really knows what it will be for me, because everyone is different........well, the control freak side of me is not at all happy with that. I may have been a bit surprised by how abrasive and brutal the ENT surgeon was the first time I saw him but at least he laid things out in black and white and I knew exactly what was coming down the chute. And I know worrying and stressing about things isn't going to change them but unfortunately, I can't seem to find the magic button that will turn my brain off and stop me from thinking about the next 4 months.<sigh>
3. The radiation might already be zapping energy although I was told I wouldn't really feel it until 2-3 weeks in so I'm not leaning towards this reason.
So yes, there WERE 16 beepy alarms. Counting wasn't all that distracting though. I've moved on to thinking about more pleasant things like what I can add to my Amazon wishlist or even better, daydreaming about the land I want to buy. Unfortunately, two e-mails to that realtor have not solicited a response. Guess I need to keep looking.
My handyman started work last night. I now have Skyping ability on my computer, my siding has been power washed to a sparkly state, and the rusty laundry pole in the backyard has been almost completely dug up. So far he's just my handyman and not my housekeeping person. My strategy during the week has been to clean one room in my house each day. I'm hoping if I can break it up into small bites like that each day, I will stay on top of things throughout radiation and not get into a downward spiral to living in a pig sty. Fingers crossed!
The only other health related comment is that my upper back/lower shoulders really ache! When I'm walking I can feel each step vibrating through me and causing me pain. Not sure if this is because I totally dolled up all week and I'm not used to wearing heels 4 days in a row, or if the tossing and turning at night is causing uncomfortable sleeping conditions, or what the issue is. This was certainly not one of the possible side effects of radiation that was mentioned to me so hopefully it's something I can fix!
Tuesday, August 14, 2012
August 14 - First actual radiation appointment today. The place I'm going for the treatments is super close to work. We're talking like 5 minutes down 490 and I'm there. Was a little anxious today, left work at 11:15 and arrived for my 11:45 appointment at 11:25. No biggie, I have a cell phone and Kindle to entertain me while I wait. Walked in, scanned my little ID card and took a seat in the waiting room. Noticed some dude sitting in the waiting room looking my way but thought he might be admiring my new scars so I didn't make eye contact. I had barely pulled my cell phone out and dude got up and strolled over to me. It was the tech that had escorted me into the back yesterday. I guess he was hanging out waiting to pounce on his next vict....I mean patient. He took me right in. He said if I'm polite enough to show up early for my appointment then he's going to scoot me in ahead of the patient he was waiting for. Talk about service!
So, I put my oh so lovely, one of a kind, amazingly stylish hospital gown on and headed to the room that houses the 'beast'. Which looks a lot like the picture below. And for those of you wondering what the state of the art Silence of the Lambs mask looks like, I found a picture. Although the picture doesn't really portray the fact that the mask is a very hard plastic and it actually clamps to the table you're laying on in 6-8 places so that you can't move a muscle. VERY disconcerting although I did much better today than yesterday.
And blonde, female, Pollock that I am, it did not occur to me until I started to lie down on the table......is this going to hurt? Will I feel it? Is it going to burn? The answer to all of those questions is, nah. I saw some lights flashing even with my eyes closed and I heard the machine moving but other than that, I didn't feel a thing. One of the nurses yesterday was showing me my radiation chart and she told me they were going to be blasting me from 16 different angles. I'm going to count the little beepy alarms tomorrow and see if the beeps dictate the blast. It should help occupy my brain while the session is going on.
Meanwhile, on the property search front, I found MY piece of property still posted on a different website. So, I've sent a note to the realtor. Even if that piece of property is gone, I'm going to ask this chick if she can be my realtor and help me find my dream. The bucket list is once again active!
So, I put my oh so lovely, one of a kind, amazingly stylish hospital gown on and headed to the room that houses the 'beast'. Which looks a lot like the picture below. And for those of you wondering what the state of the art Silence of the Lambs mask looks like, I found a picture. Although the picture doesn't really portray the fact that the mask is a very hard plastic and it actually clamps to the table you're laying on in 6-8 places so that you can't move a muscle. VERY disconcerting although I did much better today than yesterday.
And blonde, female, Pollock that I am, it did not occur to me until I started to lie down on the table......is this going to hurt? Will I feel it? Is it going to burn? The answer to all of those questions is, nah. I saw some lights flashing even with my eyes closed and I heard the machine moving but other than that, I didn't feel a thing. One of the nurses yesterday was showing me my radiation chart and she told me they were going to be blasting me from 16 different angles. I'm going to count the little beepy alarms tomorrow and see if the beeps dictate the blast. It should help occupy my brain while the session is going on.
Meanwhile, on the property search front, I found MY piece of property still posted on a different website. So, I've sent a note to the realtor. Even if that piece of property is gone, I'm going to ask this chick if she can be my realtor and help me find my dream. The bucket list is once again active!
Monday, August 13, 2012
August 13 - First day back at work has been completed and I think it went really well! I was welcomed back by bunches of flowers and numerous coworkers stopping by to give me hugs (I SO love hugs!). At 8:20 a customer actually called. I hesitated to answer because I don't know how comfortable I feel talking to people when I sound continuously drunk (again I'm thankful JT can't post on here!) but I decided to give it a try. It was a local customer needing a quote and he enthused about how glad he was that I was back. (I'm still wondering how he knew I would be back today, did a mass e-mail go out to my customer base??) I managed to read through all 858 e-mails that were in my in-box. I then started sorting through them and doing clean up. I think by noon on Wednesday I should be up to date with everything and ready to take over where I left off. Phew!
Had my simulation appointment today for radiation. I think the Ativan (anti-anxiety drug) that I took for the original fitting did a little more for me than I thought it had. I spent 25 minutes in the mask during that first appointment, because that's how long it takes to cool and form fit itself to the head, neck, and shoulders, and it was no problem whatsoever. Today, they clamped me onto the table in this mask for less than 10 minutes and I felt like I was going to lose my mind! It's a lot tighter than I remember it being and I'm not normally claustrophobic but I was silently talking myself into calmness the entire time I was there! Since I'll be doing this every day for 6-7 weeks, I am hoping I will adjust to it pretty quickly and not struggle internally for too many appointments in a row. We'll see. (I mentioned to Jer that keeping a bottle of tequila under my seat in the car and doing a shot before every appointment might be a viable option. He gave that plan the thumb's down. Urg.)
I talked to yet another doctor while I was there. We basically just reviewed what to expect. Dry mouth, difficulty eating, ropey saliva, red skin, weight loss, etc. In regards to the weight loss, I told her that I would really like to lose a total of 26 pounds during this process to hit my perfect weight and asked her if we could aim for that. She laughed and said it was definitely doable but they would prefer I lost as little weight as possible. <sigh> Work with me, people, work with me!
I was so busy buying myself some new tops to wear back to work that it didn't even occur to me to look for pants. The capris I wore today were falling off my ass all day long! I felt like I should join a rap group or something. Finally at the end of the day I complained to Lis about it. Instead of investing in belts, she showed me where to put a safety pin and have my pants stay up while still looking stylish. I have now put 5-6 safety pins in my purse, just in case.
I also wore my leopard skin sleeve today. Some lady stopped me in the parking lot to tell me how adorable it looked. Didn't I tell you I was going to set a new style trend?? Don't be surprised if I'm featured in Bazaar or Cosmo in the next couple of months! You can all say you knew me when..........
When Sammy and the kids were up to visit, Sam mentioned a couple of times that she was pleased and relieved that I looked so normal and like myself. She said that she had been really worried that I would look 'sick'. I walked around for two days trying to figure out how she was picturing me. I finally gave up. Then I spent this past Saturday at the Renaissance Festival with Patilda and she commented a few times about how great I looked. Just out of the blue, she would be looking at me and comment that I looked so much better than when she last saw me (in the hospital). Then all day today coworkers' faces were lighting up and they were exclaiming over how fantastic I looked. I told Lis I was kind of baffled. She said that people hear the 'c' word and they picture people all pale, and frail, with dark circles, etc. She said I have great color and am looking very healthy for someone who just had cancer. Plus she said when I was in the hospital I was all puffy and swollen and now that things have calmed down, I look a ton better. Okeydoke, I'll buy that. :-)
Other than that, I've been a bit frenetic as of late with my social life. I'm trying to do as much as I can with as many people as I can before I possibly take a swan dive into exhaustion 2-3 weeks into radiation. No sooner did I get home from the Renaissance Festival on Saturday, I went to the movies with JT to see Ted (again!). It was just as hilarious the second time around! Sunday I went to see the Batman movie with Luke.
This week is full of appointments, hair, vet, etc. This weekend is my 25 year class reunion. Not all that interested in going but I def want to meet my FB friend Karen. I went to school with her hubby from grade school all the way through high school. Tracked him down on FB but fell madly in love with her instead so we've been chatting off an on for 2 1/2 years now without ever having met! Still trying to work out a plan to make that happen this weekend. I'm also hoping to have my financial shenanigans in order this week so that I can take a drive to look at that piece of land this Sunday and possibly put an offer in on it!
Okay, I'm tired just talking about cramming all that stuff in this week. My glass of wine and I are headed up to bed to watch a couple of episodes of either Wings or The Vampire Diaries (needed a bit of a break from Dexter) and then it's lights out so that I can continue kicking ass and taking names at work tomorrow!
Had my simulation appointment today for radiation. I think the Ativan (anti-anxiety drug) that I took for the original fitting did a little more for me than I thought it had. I spent 25 minutes in the mask during that first appointment, because that's how long it takes to cool and form fit itself to the head, neck, and shoulders, and it was no problem whatsoever. Today, they clamped me onto the table in this mask for less than 10 minutes and I felt like I was going to lose my mind! It's a lot tighter than I remember it being and I'm not normally claustrophobic but I was silently talking myself into calmness the entire time I was there! Since I'll be doing this every day for 6-7 weeks, I am hoping I will adjust to it pretty quickly and not struggle internally for too many appointments in a row. We'll see. (I mentioned to Jer that keeping a bottle of tequila under my seat in the car and doing a shot before every appointment might be a viable option. He gave that plan the thumb's down. Urg.)
I talked to yet another doctor while I was there. We basically just reviewed what to expect. Dry mouth, difficulty eating, ropey saliva, red skin, weight loss, etc. In regards to the weight loss, I told her that I would really like to lose a total of 26 pounds during this process to hit my perfect weight and asked her if we could aim for that. She laughed and said it was definitely doable but they would prefer I lost as little weight as possible. <sigh> Work with me, people, work with me!
I was so busy buying myself some new tops to wear back to work that it didn't even occur to me to look for pants. The capris I wore today were falling off my ass all day long! I felt like I should join a rap group or something. Finally at the end of the day I complained to Lis about it. Instead of investing in belts, she showed me where to put a safety pin and have my pants stay up while still looking stylish. I have now put 5-6 safety pins in my purse, just in case.
I also wore my leopard skin sleeve today. Some lady stopped me in the parking lot to tell me how adorable it looked. Didn't I tell you I was going to set a new style trend?? Don't be surprised if I'm featured in Bazaar or Cosmo in the next couple of months! You can all say you knew me when..........
When Sammy and the kids were up to visit, Sam mentioned a couple of times that she was pleased and relieved that I looked so normal and like myself. She said that she had been really worried that I would look 'sick'. I walked around for two days trying to figure out how she was picturing me. I finally gave up. Then I spent this past Saturday at the Renaissance Festival with Patilda and she commented a few times about how great I looked. Just out of the blue, she would be looking at me and comment that I looked so much better than when she last saw me (in the hospital). Then all day today coworkers' faces were lighting up and they were exclaiming over how fantastic I looked. I told Lis I was kind of baffled. She said that people hear the 'c' word and they picture people all pale, and frail, with dark circles, etc. She said I have great color and am looking very healthy for someone who just had cancer. Plus she said when I was in the hospital I was all puffy and swollen and now that things have calmed down, I look a ton better. Okeydoke, I'll buy that. :-)
Other than that, I've been a bit frenetic as of late with my social life. I'm trying to do as much as I can with as many people as I can before I possibly take a swan dive into exhaustion 2-3 weeks into radiation. No sooner did I get home from the Renaissance Festival on Saturday, I went to the movies with JT to see Ted (again!). It was just as hilarious the second time around! Sunday I went to see the Batman movie with Luke.
This week is full of appointments, hair, vet, etc. This weekend is my 25 year class reunion. Not all that interested in going but I def want to meet my FB friend Karen. I went to school with her hubby from grade school all the way through high school. Tracked him down on FB but fell madly in love with her instead so we've been chatting off an on for 2 1/2 years now without ever having met! Still trying to work out a plan to make that happen this weekend. I'm also hoping to have my financial shenanigans in order this week so that I can take a drive to look at that piece of land this Sunday and possibly put an offer in on it!
Okay, I'm tired just talking about cramming all that stuff in this week. My glass of wine and I are headed up to bed to watch a couple of episodes of either Wings or The Vampire Diaries (needed a bit of a break from Dexter) and then it's lights out so that I can continue kicking ass and taking names at work tomorrow!
Friday, August 10, 2012
August 10 - Went back to the hospital dentist today to get my covers fitted. I am good to go. They are like partial retainers that just snap in. The fluoride trays are not needed until after radiation is complete. The dentist explained that wearing them while radiation treatments are going on could be painful because my mouth is going to be very tender. I asked him what is the point of wearing them afterwards. He said that my mouth will not be producing saliva very well for a couple of months after radiation treatments stop and the job of saliva is to strengthen and protect your teeth. The fluoride trays will help do the job that my saliva glands will be slacking on.
He wanted to know what the docs had suggested for keeping my mouth moist. I told him the only thing I remember them saying is to suck on candy. He said that wasn't very good advice. I protested that there may have been more but my brain was kind of hung up on the fact that I might vomit in the mornings due to the 'ropey' saliva! He said that very few people get sick in the morning from the thickened saliva and I should stop worrying about it. He said sugar free candy to suck on is okay. Sugar free gum would be better. I told him I'm still having chewing trouble so I'm not sure that will be an option right away. He also suggested I get a misting humidifier for next to my bed. Luckily I have one of those so I'll be installing it next to my bed this weekend. He also told me to stay away from diet soda, and acidic fruit juices and that I should basically keep a bottle of water handy at all time and simply sip it throughout the day.
Just as an aside, I have some totally hunky men doctoring me. Unfortunately, they've all been wearing wedding bands. Not that cancer girl should be thinking about dating but still...........
Went to see the movie Ted with Sush on Wednesday night. Absolutely the funniest (and raunchiest!) movie I have ever seen in my life! And even better, I was able to eat popcorn! Granted, I had to eat it one kernel at a time and I had to use my finger to make sure it was pushed over into the left side of my mouth, but it was still progress! (And salt, finally!)
My other small triumph was talking on the phone. I went to reach for something and I clamped the phone between my ear and my shoulder. Yeah, I know. So what, you ask. Well, I had not been able to do that for a while because my neck was too stiff to bend over that far! It's really amazing the dumb little things in life that get taken for granted up until they're taken away. I'm so happy to be getting some of them back again. :-)
Thank goodness Lis and Kunkel are around to nag me. I totally forgot about my PET scan! The girls came to see me at lunch just an hour or two ago and I promised to call the radiation doc as soon as they left. Which I did and good news. The rest of my body is clean, clean, clean.Woo hoo!
I've been continuing on with getting as many big projects completed as I can before radiation starts. Today my day has been dedicated to thoroughly cleaning my basement. I went out and bought myself a power washer. A really good one this time and not the cheap $99 piece of crap that I bought a few years ago and it only worked for one summer. I am not ashamed to say that I grunted like Tim Taylor when I started this baby up! Power tools rock! So, I have power washed the entire basement floor, scrubbed all the litter boxes, done a bunch of laundry, etc. The last thing I'm working on is scrubbing down the bathroom. I've been using the main floor bathroom since I came home from the hospital but all of my frou-frou stuff is down in the basement bathroom so I want to start using it again. I have one more hour to complete this task before I need to jump in the shower and prep for the big poker game tonight.
The only other big task on my list that I haven't completed yet is my Walmart shopping to stock up for the long haul. I have that planned for Sunday and then I think I'm ready for whatever radiation will bring!
He wanted to know what the docs had suggested for keeping my mouth moist. I told him the only thing I remember them saying is to suck on candy. He said that wasn't very good advice. I protested that there may have been more but my brain was kind of hung up on the fact that I might vomit in the mornings due to the 'ropey' saliva! He said that very few people get sick in the morning from the thickened saliva and I should stop worrying about it. He said sugar free candy to suck on is okay. Sugar free gum would be better. I told him I'm still having chewing trouble so I'm not sure that will be an option right away. He also suggested I get a misting humidifier for next to my bed. Luckily I have one of those so I'll be installing it next to my bed this weekend. He also told me to stay away from diet soda, and acidic fruit juices and that I should basically keep a bottle of water handy at all time and simply sip it throughout the day.
Just as an aside, I have some totally hunky men doctoring me. Unfortunately, they've all been wearing wedding bands. Not that cancer girl should be thinking about dating but still...........
Went to see the movie Ted with Sush on Wednesday night. Absolutely the funniest (and raunchiest!) movie I have ever seen in my life! And even better, I was able to eat popcorn! Granted, I had to eat it one kernel at a time and I had to use my finger to make sure it was pushed over into the left side of my mouth, but it was still progress! (And salt, finally!)
My other small triumph was talking on the phone. I went to reach for something and I clamped the phone between my ear and my shoulder. Yeah, I know. So what, you ask. Well, I had not been able to do that for a while because my neck was too stiff to bend over that far! It's really amazing the dumb little things in life that get taken for granted up until they're taken away. I'm so happy to be getting some of them back again. :-)
Thank goodness Lis and Kunkel are around to nag me. I totally forgot about my PET scan! The girls came to see me at lunch just an hour or two ago and I promised to call the radiation doc as soon as they left. Which I did and good news. The rest of my body is clean, clean, clean.Woo hoo!
I've been continuing on with getting as many big projects completed as I can before radiation starts. Today my day has been dedicated to thoroughly cleaning my basement. I went out and bought myself a power washer. A really good one this time and not the cheap $99 piece of crap that I bought a few years ago and it only worked for one summer. I am not ashamed to say that I grunted like Tim Taylor when I started this baby up! Power tools rock! So, I have power washed the entire basement floor, scrubbed all the litter boxes, done a bunch of laundry, etc. The last thing I'm working on is scrubbing down the bathroom. I've been using the main floor bathroom since I came home from the hospital but all of my frou-frou stuff is down in the basement bathroom so I want to start using it again. I have one more hour to complete this task before I need to jump in the shower and prep for the big poker game tonight.
The only other big task on my list that I haven't completed yet is my Walmart shopping to stock up for the long haul. I have that planned for Sunday and then I think I'm ready for whatever radiation will bring!
Wednesday, August 8, 2012
August 8 - Part II - OH! And the most important thing: I told the plastic surgeon what the 12 year old had said about me having to go back in to have excess 'tongue' removed. He said the kid is full of shit. That my tongue is simply still swollen and will continue to be that way for another couple of months. I told him I had a mini meltdown and was not happy when the kid had mentioned this last week. He asked for the kid's name. I think he's going to get 'spoken' to! Oops!
August 8 - Instead of Chrysa I actually got to see the big man himself today! He said my arm looks great. He was a little concerned with the last small piece of scabbing. I had to grab him before he started picking at it! I told him not to worry about it, it's going to soften up in the shower and fall off in the next couple of days. He laughed at me for shooing him away from it. He told me to wear the bandages for another week or two and then I can remove them. The graft is good to go. No limitations on lifting. I was a little worried as I lifted Mason's 4 year old chub butt into a swing yesterday but it turns out my hesitation was due to loss of some of my super strength, not due to skin grafts being on the verge of rupturing. ;-p
He also commented on the fact that the incision on the right side of my neck looks like crap. It made me snort because I had just complained to Sammy yesterday that it had looked so much better up until it got infected and re-opened itself twice! I told him about the infections and drainage. He wanted to know what the ENT dude had said about it. I told him I hadn't seen the ENT dude since the hospital and I'm not scheduled to see him again until 10/19. He was a little surprised by this but then he told me to come back and see him 6 months after my radiation treatments end. He said that he can often do some "clean-up" to make incisions look better. I told him that I was hoping it would look better all on its own once the bullfrog effect went away in a year or two. (Made him laugh again with the bullfrog comment!) He said it probably would. So maybe I'll see him, maybe I won't.
I posed Sam's question about using Mederma or some other stuff on the scars. He said it's pointless to do anything until after radiation because radiation is going to make everything a bunch worse. Yay.
And with that, I 'graduated' from the plastic surgeon. They should be faxing over a letter today letting my work know that I can get my butt back on the job on Monday. Woo hoo! I can't describe the huge wave of euphoria that swept over me when he okayed my return to work. Better than any drugs or alcohol! I miss my customers! I miss my coworkers! Hell, I even miss my boss who drives me up a wall on a weekly basis!
My wave of euphoria swept me out the door and down the road a mile to the mall for a little retail therapy. I'm not usually a shopper but some new outfits to wear back to work might make me feel better about the bride of Frankenstein look I've got going on, right? Plus, I gave myself a pedicure last night, I'm getting my eyebrows done tomorrow, and I have a message in with my hair stylist that I'm waiting for her to return. I'm going back with as much style as I can muster!
So, this week is all about hanging with peeps one last time before the radiation starts. Yesterday was Sam, tonight is Sush, Friday are the poker guys, Saturday is Patilda, and Sunday is Luke. Busy but fun!
He also commented on the fact that the incision on the right side of my neck looks like crap. It made me snort because I had just complained to Sammy yesterday that it had looked so much better up until it got infected and re-opened itself twice! I told him about the infections and drainage. He wanted to know what the ENT dude had said about it. I told him I hadn't seen the ENT dude since the hospital and I'm not scheduled to see him again until 10/19. He was a little surprised by this but then he told me to come back and see him 6 months after my radiation treatments end. He said that he can often do some "clean-up" to make incisions look better. I told him that I was hoping it would look better all on its own once the bullfrog effect went away in a year or two. (Made him laugh again with the bullfrog comment!) He said it probably would. So maybe I'll see him, maybe I won't.
I posed Sam's question about using Mederma or some other stuff on the scars. He said it's pointless to do anything until after radiation because radiation is going to make everything a bunch worse. Yay.
And with that, I 'graduated' from the plastic surgeon. They should be faxing over a letter today letting my work know that I can get my butt back on the job on Monday. Woo hoo! I can't describe the huge wave of euphoria that swept over me when he okayed my return to work. Better than any drugs or alcohol! I miss my customers! I miss my coworkers! Hell, I even miss my boss who drives me up a wall on a weekly basis!
My wave of euphoria swept me out the door and down the road a mile to the mall for a little retail therapy. I'm not usually a shopper but some new outfits to wear back to work might make me feel better about the bride of Frankenstein look I've got going on, right? Plus, I gave myself a pedicure last night, I'm getting my eyebrows done tomorrow, and I have a message in with my hair stylist that I'm waiting for her to return. I'm going back with as much style as I can muster!
So, this week is all about hanging with peeps one last time before the radiation starts. Yesterday was Sam, tonight is Sush, Friday are the poker guys, Saturday is Patilda, and Sunday is Luke. Busy but fun!
Tuesday, August 7, 2012
August 7 - You ever have one of those days? My appointment with the RGH dentist was at 9:00 this morning. Last week the radiation nurse told me to just park in the cancer center parking lot and check in at the front desk and they would tell me where I needed to go. Based on this, I skated out the door at 8:40 since the hospital is less than 3 miles from my house. Unfortunately, they changed the code on the cancer parking lot so I had to park a couple of blocks away and walk back. Then the front desk had no idea where I was supposed to be and it took them a bit of time to figure it out. I didn't get to the desk for the dentist until 9:05 which makes me twitchy, hate being late. Then there was quite a line and when I finally got to the window, they had me filling out paperwork that I had already filled out for the cancer center a couple of weeks ago. I asked them what was up with that since they're all a part of the same hospital. Something about the computer systems still getting tied in and they hope to be on-line with the rest of the hospital by January. So, I didn't actually get checked in until 9:30. How embarrassing!
And of course, nobody seemed to know why I was there to see the dentist. I told the dentist what I thought I was there for but I also told him I wasn't sure. It seems like nobody talks directly TO me, I simply listen in to all of the conversations the health care professionals have with each other. Poor guy felt bad. He said "Okay, well I'm talking TO you so let's figure this out together". (I liked him!) So, it turns out I need "covers" that I will need to wear during radiation because of my bridge and my crown. He will also be making me fluoride trays which get worn after radiation. Getting the impression taken of the top part of my mouth was not fun. The goop felt like it was going halfway down my throat and I started gagging. Dentist talked me through it but I'm pretty sure he's going to have bruises around his wrist tonight from where I was clutching at him. I have to go back on Friday morning for a final fitting at which point he will hand over the covers and trays to me.
I noticed yesterday that I am actually putting my teeth together now. Hooray! Unfortunately, it takes more than this to be able to chew. It would seem when you chew, your tongue moves around quite a bit. While I am still stuck eating soft foods, it felt really good to see some actual improvement in the swelling!
Sammy and the ankle biters came to see me today. We walked down to the neighborhood park and had a lot of fun with balloons, frisbees, swings, etc. It felt great to have a kid day! Of course I am now completely wiped out and I'm heading to bed to watch some more Dexter and call it an early night.
More to come tomorrow after I see Chrysa!
And of course, nobody seemed to know why I was there to see the dentist. I told the dentist what I thought I was there for but I also told him I wasn't sure. It seems like nobody talks directly TO me, I simply listen in to all of the conversations the health care professionals have with each other. Poor guy felt bad. He said "Okay, well I'm talking TO you so let's figure this out together". (I liked him!) So, it turns out I need "covers" that I will need to wear during radiation because of my bridge and my crown. He will also be making me fluoride trays which get worn after radiation. Getting the impression taken of the top part of my mouth was not fun. The goop felt like it was going halfway down my throat and I started gagging. Dentist talked me through it but I'm pretty sure he's going to have bruises around his wrist tonight from where I was clutching at him. I have to go back on Friday morning for a final fitting at which point he will hand over the covers and trays to me.
I noticed yesterday that I am actually putting my teeth together now. Hooray! Unfortunately, it takes more than this to be able to chew. It would seem when you chew, your tongue moves around quite a bit. While I am still stuck eating soft foods, it felt really good to see some actual improvement in the swelling!
Sammy and the ankle biters came to see me today. We walked down to the neighborhood park and had a lot of fun with balloons, frisbees, swings, etc. It felt great to have a kid day! Of course I am now completely wiped out and I'm heading to bed to watch some more Dexter and call it an early night.
More to come tomorrow after I see Chrysa!
Saturday, August 4, 2012
August 4 - Nothing huge to report but I know some peeps get anxious if I don't post regularly so just some random blurbs about stuff:
My radiation appointments have been changed to 11:45. I am much happier with that timeslot. I can now consider these appointments my lunch break.
The scabbing on my arm is almost completely gone. There is just one small spot left where the large rub spot from the tendon was trying to escape. Otherwise, there is pink, healthy skin everywhere and it looks less of an eyesore with each passing day! I made the executive decision to stop wearing the splint this past Thursday. I had been wearing it for 2 weeks longer than expected so I'm pretty sure Chrysa would approve. I am now wearing just bulky bandaging and an Ace wrap so that I don't bump the graft against anything and shear my poor, newly formed, baby skin. It feels good to be moving my wrist again (and typing with 2 hands instead of the dreaded hunt and peck method!). I also turned my Wii back on yesterday. Thank goodness. I am tired of reading, watching movies, and cleaning which is pretty much all I've been doing for weeks on end. It's nice to throw a new activity back into the mix!
I thought it would be a good idea to go outside and week whack some of the jungle that was taking over my back yard. Turns out this wasn't such a bright idea. One of the tree size weeds caused the whacker to kick back and hit me in the spot where they took skin off my thigh. Turns out this spot is a little delicate. So, there's a little scrape there now that has scabbed over. Meanwhile, no more power tools for me.
I hired a handyman/part-time housekeeper. He has already fixed my printer which has me super psyched. He now has a list of 50 more things that need to be taken care of around the homestead. I was bummed to hear his vehicle broke down yesterday though. Guess he won't be coming over to clean up my life until he gets that fixed. I'll be sitting over here patiently waiting in the meantime.....
Broke down and bought a bottle of wine on Thursday. Had a glass on that night and a glass last night. I would like the record to show that I went almost 5 full weeks without alcohol. I know my poker buds will be impressed with that (or else telling me how lame I am for waiting that long!).
If anything is going to need to be rehabilitated, it's going to be my jaw. I poked myself in the lip the other day with a fork because I couldn't get my mouth open wide enough for the bite of scrambled egg I was trying to eat. I don't know if my jaw is stiffening up from not chewing for so long, or if something got strained when they propped me open to do the surgery, or if my bite is going out of whack because this wad of flesh in my mouth is shoving things off to one side....whatever the reason, if I try to open my mouth too far, the jawbone pops and it bleeping hurts! Maybe the rehab for this will be to chew lots of gum once I'm finally able to chew. Chewing gum sounds like a fun way to get things moving again!
So, since I have the uber cute sleeves to cover my arm, Patilda and I were discussing the neck incisions. She was thinking some tattoos of lightning and big metal bolts. Or possibly some pretty scarves. She can be realistic when she puts her mind to it. ;-P
I've been experimenting all over the place with foods that I can eat. Stuffed clams, ravioli, stuffed shells, pierogies, cinnamon buns, doughnuts, scallops, pumpkin pie, raw brownie batter, italian ice....
It's a bummer that there are a lot more sweet soft foods than there are salty soft foods. I am so not a sweet person (and I'm actually sick of ice cream at this point, can you believe it??). I broke down the other day and started sucking on potato chips because I was so desperate for something salty. I have also stocked up on split pea soup and have bought some cans of sardines and anchovies. Bring on the salt!
I'm still down the original 18 pounds but I've been holding steady at that weight which has been a relief. I'm a little worried about what type of nutrition I'm getting with the weird assortment of foods I'm eating though. What food group would you classify raw brownie batter in?? I should probably pick up a multi vitamin the next time I'm at the story.
Those are all the updates I have for now. This coming week I get fitted with the fluoride trays, Sam and the kids will be visiting, Chrysa will hopefully give me the thumb's up to move forward in life, Freedom gets his nails clipped, Lis and Kunkel are stopping in, and JT will be picking me up Friday night to whisk me away to a hot poker game because Mr. Price is actually going to be in town. Woo hoo!
My radiation appointments have been changed to 11:45. I am much happier with that timeslot. I can now consider these appointments my lunch break.
The scabbing on my arm is almost completely gone. There is just one small spot left where the large rub spot from the tendon was trying to escape. Otherwise, there is pink, healthy skin everywhere and it looks less of an eyesore with each passing day! I made the executive decision to stop wearing the splint this past Thursday. I had been wearing it for 2 weeks longer than expected so I'm pretty sure Chrysa would approve. I am now wearing just bulky bandaging and an Ace wrap so that I don't bump the graft against anything and shear my poor, newly formed, baby skin. It feels good to be moving my wrist again (and typing with 2 hands instead of the dreaded hunt and peck method!). I also turned my Wii back on yesterday. Thank goodness. I am tired of reading, watching movies, and cleaning which is pretty much all I've been doing for weeks on end. It's nice to throw a new activity back into the mix!
I thought it would be a good idea to go outside and week whack some of the jungle that was taking over my back yard. Turns out this wasn't such a bright idea. One of the tree size weeds caused the whacker to kick back and hit me in the spot where they took skin off my thigh. Turns out this spot is a little delicate. So, there's a little scrape there now that has scabbed over. Meanwhile, no more power tools for me.
I hired a handyman/part-time housekeeper. He has already fixed my printer which has me super psyched. He now has a list of 50 more things that need to be taken care of around the homestead. I was bummed to hear his vehicle broke down yesterday though. Guess he won't be coming over to clean up my life until he gets that fixed. I'll be sitting over here patiently waiting in the meantime.....
Broke down and bought a bottle of wine on Thursday. Had a glass on that night and a glass last night. I would like the record to show that I went almost 5 full weeks without alcohol. I know my poker buds will be impressed with that (or else telling me how lame I am for waiting that long!).
If anything is going to need to be rehabilitated, it's going to be my jaw. I poked myself in the lip the other day with a fork because I couldn't get my mouth open wide enough for the bite of scrambled egg I was trying to eat. I don't know if my jaw is stiffening up from not chewing for so long, or if something got strained when they propped me open to do the surgery, or if my bite is going out of whack because this wad of flesh in my mouth is shoving things off to one side....whatever the reason, if I try to open my mouth too far, the jawbone pops and it bleeping hurts! Maybe the rehab for this will be to chew lots of gum once I'm finally able to chew. Chewing gum sounds like a fun way to get things moving again!
So, since I have the uber cute sleeves to cover my arm, Patilda and I were discussing the neck incisions. She was thinking some tattoos of lightning and big metal bolts. Or possibly some pretty scarves. She can be realistic when she puts her mind to it. ;-P
I've been experimenting all over the place with foods that I can eat. Stuffed clams, ravioli, stuffed shells, pierogies, cinnamon buns, doughnuts, scallops, pumpkin pie, raw brownie batter, italian ice....
It's a bummer that there are a lot more sweet soft foods than there are salty soft foods. I am so not a sweet person (and I'm actually sick of ice cream at this point, can you believe it??). I broke down the other day and started sucking on potato chips because I was so desperate for something salty. I have also stocked up on split pea soup and have bought some cans of sardines and anchovies. Bring on the salt!
I'm still down the original 18 pounds but I've been holding steady at that weight which has been a relief. I'm a little worried about what type of nutrition I'm getting with the weird assortment of foods I'm eating though. What food group would you classify raw brownie batter in?? I should probably pick up a multi vitamin the next time I'm at the story.
Those are all the updates I have for now. This coming week I get fitted with the fluoride trays, Sam and the kids will be visiting, Chrysa will hopefully give me the thumb's up to move forward in life, Freedom gets his nails clipped, Lis and Kunkel are stopping in, and JT will be picking me up Friday night to whisk me away to a hot poker game because Mr. Price is actually going to be in town. Woo hoo!
Thursday, August 2, 2012
August 2 - PET scan yesterday was fine. Went in and first they test your blood to make sure you did the no carb/fasting thing. (If you don't, they fine you $300!) My sugar count was 89 and they said anything below 100 meant that they could proceed with the test. They then shot me full of radioactive stuff and flooded my body with sugar through an IV. It turns out that cancer loves sugar so this whole process is to take pictures and see where, if anywhere, the sugar gravitates to in large quantities because it could indicate a hot spot for cancer. Have I mentioned that science is weird? Anyway, I then got to take my Ativan and sit quietly for 45 minutes for everything to take effect. Then I went into a big room with a very long tube. I had to lay down and hold very still for 45 minutes while I was randomly moved back and forth through this tube (I fell asleep!). Then I was done.
- Huge thanks to Leo for dragging my drugged butt around yesterday! And he totally saved me with the fruit smoothie after the appointment. I was starving! I'm surprised the vibrations from my rumbling tummy didn't cause their pictures to blur! You rock, Gammy!
- Kudos to the guy who put my IV in. I have discovered over the past couple of months that finding a vein in either of my arms is mission impossible. I STILL have bruises showing on my right arm where IV attempts were made a month ago! Anywho, dude yesterday took his time, got it first try, and it barely hurt. I told him I was coming back to him for all my poking from here on out!
- I scored a really cute pair of navy blue paper pants. They don't even feel like paper! Since they were just going to trash them, I asked if I could have them. They'll be great for when I want to do some painting!
And I'm ending today's blog with a comment on the famed "bucket list". Does everyone have one of these? I sure don't but I'm thinking I need one at this point. I'm going to rent and watch the movie this weekend and then put some thought into my list. The one thing that I have that may meet the parameters of being bucket list worthy is owning a piece of land. For over 5 years now I have been looking at plots of land that are at least 20 acres. I want someplace within a 2 hour drive that the dogs and I can go camping on. Plus 20 years from now (if I'm still kickin') I'd like to build a retirement cabin on it. My friend Kit had a gorgeous cabin built out in the woods a few years ago and I totally fell in love with it which is what got me thinking about it in the first place. So far it's simply been a daydream to own this land because my actual house still needs so much work but I think I need to make it a reality because it's always nice to have someplace peaceful to escape to. Stay tuned on this...........
- Huge thanks to Leo for dragging my drugged butt around yesterday! And he totally saved me with the fruit smoothie after the appointment. I was starving! I'm surprised the vibrations from my rumbling tummy didn't cause their pictures to blur! You rock, Gammy!
- Kudos to the guy who put my IV in. I have discovered over the past couple of months that finding a vein in either of my arms is mission impossible. I STILL have bruises showing on my right arm where IV attempts were made a month ago! Anywho, dude yesterday took his time, got it first try, and it barely hurt. I told him I was coming back to him for all my poking from here on out!
- I scored a really cute pair of navy blue paper pants. They don't even feel like paper! Since they were just going to trash them, I asked if I could have them. They'll be great for when I want to do some painting!
And I'm ending today's blog with a comment on the famed "bucket list". Does everyone have one of these? I sure don't but I'm thinking I need one at this point. I'm going to rent and watch the movie this weekend and then put some thought into my list. The one thing that I have that may meet the parameters of being bucket list worthy is owning a piece of land. For over 5 years now I have been looking at plots of land that are at least 20 acres. I want someplace within a 2 hour drive that the dogs and I can go camping on. Plus 20 years from now (if I'm still kickin') I'd like to build a retirement cabin on it. My friend Kit had a gorgeous cabin built out in the woods a few years ago and I totally fell in love with it which is what got me thinking about it in the first place. So far it's simply been a daydream to own this land because my actual house still needs so much work but I think I need to make it a reality because it's always nice to have someplace peaceful to escape to. Stay tuned on this...........
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