Decided to transcribe the message from Dr. C. Here's exactly what was said:
"Ms. Quinn, Dr. C, just wanted to get back to you on the PET scan you had done today. There is some activity at your base of tongue area. The same area we looked at when you were in the office recently. Given that the PET scan showed increased activity, I would proceed to do a biopsy of this area. I'm letting you know in a message which I don't like to do, I like to discuss in person but we need to schedule the biopsy. We'll get it scheduled as quick as we can, within the next week or so, so that we can get the area mapped out. But is looks.......they're calling it suspicious or recurrent disease at the tongue base area behind where we operated. Give us a call tomorrow and we'll begin the process of getting things biopsied for you."
Thursday, July 11, 2013
July 11 - Part II
So, I hit post on that last blog, walk out into the kitchen, and see I have a message on my answering machine. Must have gotten a call while I was sleeping. It's Dr. C. Guess Kunkel was right, the results ARE instantaneous. The PET scan is showing that there is recurrent activity behind where they performed the surgery last year. I have to go in for a biopsy next week. It's baaaack............
July 11
I really don't have much to report but peeps are wondering so........
The PET scan went fine for the most part. I got there, they took me to a back room where I downed the anti-anxiety pill. My tech, Rob, then took a blood sample to make sure I had done the no-carb thing. My sugar said 74 which he was very pleased with. I asked him if 100 is the number you need to be under and he said hardly anyone EVER gets their sugar under 100 so the number is more like 125-150. Yes, I'm an over achiever, what can I say. :-)
Then Rob tried to put an IV in. Throughout this whole process over the past year I have learned that I have really tiny veins and I'm very hard to 'stick'. I also learned that I don't like to watch. I don't mind blood but watching them stick a needle in me, and then moving it around under the skin (which bleeping hurts!) because the vein moved on them and they're trying to find it again, really grosses me out and I get a little woozy. So, I don't watch. So while I'm not watching today, there are sounds coming from tech Rob that are sounding a little more frantic than they should. I turn around to see what's going on and there's blood everywhere! WTH?! I looked at him and asked "What happened??". Turns out he accidentally hit an artery rather than a vein. Ewwww. After he got the bleeding to stop, washed off my entire arm, changed the covers on the pillow, and basically did a major cleanup, we were good to go again. Unfortunately, since he 'ruined' the area in the crook of my elbow, I once again had to get the line put in the back of my hand. Those hurt quite a bit more that the other but at least we finally got it done. Then they shot me up with the radioactive sugar and inserted a saline drip to disperse it through my body, and I got to sit quietly for 45 minutes. I think I read for 10 minutes and then just decided to nap because last night was not a good sleeping night. Too many bad dreams about cancer creeping through my body and eating me alive. Or the other worry is slowly wasting away until I don't weigh enough to keep myself alive. My scale said 116 this morning. That's the lowest I've been yet, I think.
Anyway, I then get stuck in the machine for picture taking time. I was in the machine for ~45 minutes. I took a nap in there too. :-)
And then I was done. My coworker, Rich, came to pick me up. I took him to lunch at the Crab Shack as a thank you for picking up my sad, sorry butt, and because I hadn't eaten anything since 6:30 the night before and I thought food would make me feel better. Turns out I was wrong. I got nauseous. Rich dropped me off at home instead of back at work and he and JT dropped my car off in my driveway later on in the afternoon for me. I've been sleeping ever since.
Not sure when I'll hear from Dr. C about the PET scan results. Kunkel said she thought he had said the results were pretty instantaneous. I don't remember him saying that but hey, that's why I bring an extra set of ears with me. Either way, I have a checkup appointment set up with him for next Thursday that I haven't gotten around to canceling yet so I'm just going to leave it on the books until I hear from his office. So, hopefully within a week I will know if I have to go through another round of hell or not. Stay tuned.
The PET scan went fine for the most part. I got there, they took me to a back room where I downed the anti-anxiety pill. My tech, Rob, then took a blood sample to make sure I had done the no-carb thing. My sugar said 74 which he was very pleased with. I asked him if 100 is the number you need to be under and he said hardly anyone EVER gets their sugar under 100 so the number is more like 125-150. Yes, I'm an over achiever, what can I say. :-)
Then Rob tried to put an IV in. Throughout this whole process over the past year I have learned that I have really tiny veins and I'm very hard to 'stick'. I also learned that I don't like to watch. I don't mind blood but watching them stick a needle in me, and then moving it around under the skin (which bleeping hurts!) because the vein moved on them and they're trying to find it again, really grosses me out and I get a little woozy. So, I don't watch. So while I'm not watching today, there are sounds coming from tech Rob that are sounding a little more frantic than they should. I turn around to see what's going on and there's blood everywhere! WTH?! I looked at him and asked "What happened??". Turns out he accidentally hit an artery rather than a vein. Ewwww. After he got the bleeding to stop, washed off my entire arm, changed the covers on the pillow, and basically did a major cleanup, we were good to go again. Unfortunately, since he 'ruined' the area in the crook of my elbow, I once again had to get the line put in the back of my hand. Those hurt quite a bit more that the other but at least we finally got it done. Then they shot me up with the radioactive sugar and inserted a saline drip to disperse it through my body, and I got to sit quietly for 45 minutes. I think I read for 10 minutes and then just decided to nap because last night was not a good sleeping night. Too many bad dreams about cancer creeping through my body and eating me alive. Or the other worry is slowly wasting away until I don't weigh enough to keep myself alive. My scale said 116 this morning. That's the lowest I've been yet, I think.
Anyway, I then get stuck in the machine for picture taking time. I was in the machine for ~45 minutes. I took a nap in there too. :-)
And then I was done. My coworker, Rich, came to pick me up. I took him to lunch at the Crab Shack as a thank you for picking up my sad, sorry butt, and because I hadn't eaten anything since 6:30 the night before and I thought food would make me feel better. Turns out I was wrong. I got nauseous. Rich dropped me off at home instead of back at work and he and JT dropped my car off in my driveway later on in the afternoon for me. I've been sleeping ever since.
Not sure when I'll hear from Dr. C about the PET scan results. Kunkel said she thought he had said the results were pretty instantaneous. I don't remember him saying that but hey, that's why I bring an extra set of ears with me. Either way, I have a checkup appointment set up with him for next Thursday that I haven't gotten around to canceling yet so I'm just going to leave it on the books until I hear from his office. So, hopefully within a week I will know if I have to go through another round of hell or not. Stay tuned.
Wednesday, July 10, 2013
July 10th
My mistake, I don't fast for 24 hours before the PET scan, I have to do a no-carb diet. My PET scan is at 9:00 am tomorrow so my no-carb thing started at 9:00 this morning. Along with no caffeine, no alcohol, no carbonated beverages, no exercise, and a list of other weird things I'm not allowed.
So, I was supposed to do lunch with my 'lunch club' today but due to the no carb thing, I cancelled it and went home for lunch so that I could eat a cheese omelet. But I wasn't thinking and I drank a huge glass of milk with my omelet!! I'm not allowed dairy either according to the PET scan place and there was 26 grams of carbs in that glass. UGH! Hopefully since my 24 hours didn't start until 9:00 this morning, and I only cheated 3 hours into the timeframe, maybe I can drink enough water to purge those carbs and offset any damage I did. They take your blood when you arrive for the PET scan and if your sugar numbers aren't under 100 or something they fine you $300 and you have to reschedule. Yeesh.
I'm all set with Leo taking me to the appointment and then Rich picking me up and bringing me back to work. I can't remember if I went back to work after the last one or not. They tell you not to take the anxiety medicine until you're at the appointment because they don't want it wearing off too fast. This leads me to believe that I should be fine working tomorrow afternoon. Which is a good thing because we've sold (3) machines in the past week! We haven't sold any machines in months and then suddenly, during what is normally the slowest month of the year, things have gone crazy. This of course is a good thing, job security and all.
I was telling a coworker earlier this week that it looks like the cancer might be back. I then realized that I was being kind of negative so I went to talk to Kunkel. I asked her if she walked out of the appointment with Dr. C feeling optimistic or pessimistic. She said it was funny that I asked because she had been wondering the same thing! She said it was a roller coaster of an appointment and she wasn't sure what to think by the end of it. I'm guessing doctors need to be obscure like that until actual test results show up.
I keep swinging both ways as well. On Sunday I swear my ear was aching a lot less than it has been. Then I started second guessing myself. Maybe I'm just wishing that the night guard is having an effect because I would prefer that my ear is aching due to TMJ rather than a second round of cancer. Now today I feel like I'm having difficulty swallowing. Like there's some kind of obstruction way down deep in the back of my throat. I have to think this is purely psychosomatic though. Or I at least hope it is.
And I had another wishy washy thought yesterday. My thrush hasn't been bothering me. But is it because I finally kicked that nasty stuff or is it because I've been downing 4-6 Advil at a time and now I've switched to Vicoden so maybe I'm just not feeling the thrush any more??
I sent my friend Sandi a picture of me wearing the incredibly cute $4 dress that I found at the thrift store last week. She responded that she loves my hair flat ironed. I laughed. I haven't flat ironed it in a while now. I think it's gone naturally straight. Somebody told me that radiation can permanently change what your hair normally does. Thanks goodness I look okay in straight hair!
Improvements:
- Thrush comes and goes.
- Spit production still around 50%.
- Bullfrog effect still happening.
- Garbled talking. Swollen throat.
- Partial taste buds - Sweet is around 15% right now.
Fun stuff:
Scott and I had a good time with Kit and Fran. They're a funny couple! And the cocktail party at the Jazz Fest was as awesome as usual. They had a bathtub of giant shrimp and super yummy hand passed snackie foods like crabcakes and bruschetta. After the cocktail party it started to rain so we ended up at a local bar shooting darts and pool. Scott kicked my ass at darts, I beat him on the pool table. We had a blast! And the 'scotch' at Woodcliff was canceled due to lack of interest. Huge bummer. We ended up going to a brand spanking new restaurant with some of Scott's friends. I had the duck. It was fabulous!
Not much of anything happened this past week on the fun side. I managed to clean my garage over the holiday weekend. Just in time too because yesterday I received an e-mail from one of the poker guys. One of our comrades, Baby B, moved to Florida a handful of years ago but will be in town this month for a couple of weeks. We don't normally play poker during the summer because everyone is too busy with their families and the nice weather but for Baby B. we'll pull together a game!
Last Friday, Scott's boss, Paul, invited me in to the office to eat lunch with the guys, he was buying. So, I baked a bunch of cookies and schmoozed with honey-bunny's coworkers/boss while they worked/ate. I mostly got to talk to Paul since he's a manager (read that as paper pusher) and so he was able to simply sit, eat, and carry on a conversation rather than having to stay glued to a monitor, dispatching drivers. It turns out that Paul's wife recently found a lump in her breast. They have an appointment with a doctor tomorrow to get it checked out. I had Scott pass along my e-mail address and phone number to Paul in case his wife wants someone to talk to who is somewhat in the same boat.
This past Sunday I put on a super cute dress, got dolled up, and took myself out for a fancy dinner. Why? I don't know. Just because I can, I guess. :-) I sat out on the patio, had some shrimp bisque and some roast duck (again), and enjoyed myself.
Last night my friend Jamie and I met Scott and his daughter, Jessica, and her friend, Sara, at the beach and we watched a free showing of Jaws while sitting outside next to the lake. It was really cool! Unfortunately they can't start the movie until it gets dark which is around 9:00 which means halfway through I fell asleep in my chair. I'm so old. I was thinking about hitting the drive-in this Saturday because the double feature is Despicable Me 2 and Monsters University, both of which I really want to see! But if I can't make it through one movie that started at 9:00, I have no idea how I expect myself to make it through two.
That's it for now. I'll post an update when I hear what the PET scan has to say.
So, I was supposed to do lunch with my 'lunch club' today but due to the no carb thing, I cancelled it and went home for lunch so that I could eat a cheese omelet. But I wasn't thinking and I drank a huge glass of milk with my omelet!! I'm not allowed dairy either according to the PET scan place and there was 26 grams of carbs in that glass. UGH! Hopefully since my 24 hours didn't start until 9:00 this morning, and I only cheated 3 hours into the timeframe, maybe I can drink enough water to purge those carbs and offset any damage I did. They take your blood when you arrive for the PET scan and if your sugar numbers aren't under 100 or something they fine you $300 and you have to reschedule. Yeesh.
I'm all set with Leo taking me to the appointment and then Rich picking me up and bringing me back to work. I can't remember if I went back to work after the last one or not. They tell you not to take the anxiety medicine until you're at the appointment because they don't want it wearing off too fast. This leads me to believe that I should be fine working tomorrow afternoon. Which is a good thing because we've sold (3) machines in the past week! We haven't sold any machines in months and then suddenly, during what is normally the slowest month of the year, things have gone crazy. This of course is a good thing, job security and all.
I was telling a coworker earlier this week that it looks like the cancer might be back. I then realized that I was being kind of negative so I went to talk to Kunkel. I asked her if she walked out of the appointment with Dr. C feeling optimistic or pessimistic. She said it was funny that I asked because she had been wondering the same thing! She said it was a roller coaster of an appointment and she wasn't sure what to think by the end of it. I'm guessing doctors need to be obscure like that until actual test results show up.
I keep swinging both ways as well. On Sunday I swear my ear was aching a lot less than it has been. Then I started second guessing myself. Maybe I'm just wishing that the night guard is having an effect because I would prefer that my ear is aching due to TMJ rather than a second round of cancer. Now today I feel like I'm having difficulty swallowing. Like there's some kind of obstruction way down deep in the back of my throat. I have to think this is purely psychosomatic though. Or I at least hope it is.
And I had another wishy washy thought yesterday. My thrush hasn't been bothering me. But is it because I finally kicked that nasty stuff or is it because I've been downing 4-6 Advil at a time and now I've switched to Vicoden so maybe I'm just not feeling the thrush any more??
I sent my friend Sandi a picture of me wearing the incredibly cute $4 dress that I found at the thrift store last week. She responded that she loves my hair flat ironed. I laughed. I haven't flat ironed it in a while now. I think it's gone naturally straight. Somebody told me that radiation can permanently change what your hair normally does. Thanks goodness I look okay in straight hair!
Improvements:
- Thrush comes and goes.
- Spit production still around 50%.
- Bullfrog effect still happening.
- Garbled talking. Swollen throat.
- Partial taste buds - Sweet is around 15% right now.
Fun stuff:
Scott and I had a good time with Kit and Fran. They're a funny couple! And the cocktail party at the Jazz Fest was as awesome as usual. They had a bathtub of giant shrimp and super yummy hand passed snackie foods like crabcakes and bruschetta. After the cocktail party it started to rain so we ended up at a local bar shooting darts and pool. Scott kicked my ass at darts, I beat him on the pool table. We had a blast! And the 'scotch' at Woodcliff was canceled due to lack of interest. Huge bummer. We ended up going to a brand spanking new restaurant with some of Scott's friends. I had the duck. It was fabulous!
Not much of anything happened this past week on the fun side. I managed to clean my garage over the holiday weekend. Just in time too because yesterday I received an e-mail from one of the poker guys. One of our comrades, Baby B, moved to Florida a handful of years ago but will be in town this month for a couple of weeks. We don't normally play poker during the summer because everyone is too busy with their families and the nice weather but for Baby B. we'll pull together a game!
Last Friday, Scott's boss, Paul, invited me in to the office to eat lunch with the guys, he was buying. So, I baked a bunch of cookies and schmoozed with honey-bunny's coworkers/boss while they worked/ate. I mostly got to talk to Paul since he's a manager (read that as paper pusher) and so he was able to simply sit, eat, and carry on a conversation rather than having to stay glued to a monitor, dispatching drivers. It turns out that Paul's wife recently found a lump in her breast. They have an appointment with a doctor tomorrow to get it checked out. I had Scott pass along my e-mail address and phone number to Paul in case his wife wants someone to talk to who is somewhat in the same boat.
This past Sunday I put on a super cute dress, got dolled up, and took myself out for a fancy dinner. Why? I don't know. Just because I can, I guess. :-) I sat out on the patio, had some shrimp bisque and some roast duck (again), and enjoyed myself.
Last night my friend Jamie and I met Scott and his daughter, Jessica, and her friend, Sara, at the beach and we watched a free showing of Jaws while sitting outside next to the lake. It was really cool! Unfortunately they can't start the movie until it gets dark which is around 9:00 which means halfway through I fell asleep in my chair. I'm so old. I was thinking about hitting the drive-in this Saturday because the double feature is Despicable Me 2 and Monsters University, both of which I really want to see! But if I can't make it through one movie that started at 9:00, I have no idea how I expect myself to make it through two.
That's it for now. I'll post an update when I hear what the PET scan has to say.
Wednesday, July 3, 2013
July 3rd
Well, July just doesn't seem to be my month in general. Doctor C showed me the MRI pics. There's a suspicious 'spot' way down deep on the back of my tongue. Not a surface spot (or tumor) like I had on my tongue but a deep tissue spot. He scoped me and did some probing with fingers and mirrors. He said he can feel an abnormality down in there but can't really tell much from the feel of it. He said only ~5% of patients have cancer reoccur in an area that has been radiated. Which is why radiation docs usually refer to themselves as the "one and done" docs. Plus he says radiation changes the terrain of the area that has been radiated anyway so it's hard for surgeons to be able to tell if something wonky is going on in those areas or not. So, step one is to get a PET scan. This is the scan where I have to fast the night before, then they shoot me up with sugar, and then I get stuck in a body sized mail tube to get scanned. Cancer loves sugar so if there's cancer present, the sugar will all conglomerate around it and light it up like a Christmas tree. This was also the scan where I had to take the anxiety medicine beforehand and had to have someone drive me. I'm going to have to tap someone to be my chauffeur when this thing gets scheduled. And it will take a week or two to get it scheduled because all PET scans have to be approved by the insurance company first. And then according to Dr. C, 100% of them get denied. And then he has to get on the phone and tell the nice insurance people exactly why he is recommending the scan at which point they usually approve it. He said it's a bunch of bullshit hoops that docs have to jump through. He also wrote me out a prescription for Vicodin to help manage the pain. He said THAT whole process will be getting a lot more complicated come August as well. There's going to be some website that he has to log into whenever he wants to prescribe a narcotic to make sure I haven't been doctor hopping and getting pain meds from numerous different docs. Sheesh!
Anyway, if the PET scan shows that it COULD very well be cancer then he will make an appointment for me to come in so he can biopsy the area. It's done right in his office but he will put me to sleep for it and it takes about 30 minutes.
If it IS cancer, it's in a really hard to reach area. He said that if he performed the surgery, he'd have to split my jaw in half and swing the lower half of my face out to get to it. He says there's a guy in town though that does surgeries like this with a robotic arm so that splitting the jaw isn't necessary. He thinks I would be a good candidate for that.
But we get ahead of ourselves. PET scan first. I took Kunkel to this appointment. She said Dr. C was nothing like what she was picturing from the comments I made about him. She said he actually seemed fairly personable. I'm not sure if it was her influence or if he had a good day but he actually was pretty personable. Still rambled off on a lot of tangents, brutally described different paths that might need to be taken, and didn't give any concrete answers to any questions asked...........but he was somewhat personable despite all that. :-)
Anyway, if the PET scan shows that it COULD very well be cancer then he will make an appointment for me to come in so he can biopsy the area. It's done right in his office but he will put me to sleep for it and it takes about 30 minutes.
If it IS cancer, it's in a really hard to reach area. He said that if he performed the surgery, he'd have to split my jaw in half and swing the lower half of my face out to get to it. He says there's a guy in town though that does surgeries like this with a robotic arm so that splitting the jaw isn't necessary. He thinks I would be a good candidate for that.
But we get ahead of ourselves. PET scan first. I took Kunkel to this appointment. She said Dr. C was nothing like what she was picturing from the comments I made about him. She said he actually seemed fairly personable. I'm not sure if it was her influence or if he had a good day but he actually was pretty personable. Still rambled off on a lot of tangents, brutally described different paths that might need to be taken, and didn't give any concrete answers to any questions asked...........but he was somewhat personable despite all that. :-)
Tuesday, July 2, 2013
July 2nd
Fuck. Results from the MRI are in sooner than expected and I walked in to work this morning to a voicemail from Dr. C's office. He wants to see me at 3:30 tomorrow. Chickie on the phone said he's specifically leaving the hospital on a surgery day to come talk to me. That can't be good. I'm sitting here crying at my desk. I am now going to be freaking out until tomorrow afternoon. Funny, today marks the one year anniversary of my surgery..........
Monday, July 1, 2013
July 1st
July 1st - So, I don't think I've had an MRI before. I've had a PET scan where they make you fast and then flood your body with sugar before putting you into a huge machine that scans your entire body. And I've had two CT scans where they put in an IV and after some non-contrast pictures, they put dye in you for the contrast pictures. That's the dye where you feel like you're wetting yourself. On Friday, I was put into an all new and different machine and the dye was injected directly into a vein halfway through the procedure (and I'm happy to report it did NOT make me feel like I was wetting myself!). And let me tell you, it was quite a procedure. Ear plugs, ear cushions, a football helmet type mask, and I was in the machine for almost an hour! Yeesh! Results should be in next week.
Meanwhile, I've used the heating pad a few times now. Not sure if it's helping but it feels really good while I'm using it. Unfortunately I worry that I'm going to fall asleep with it on and while it has an automatic shut off, what if it malfunctions? My mom befriended a little old lady named Mary when I had my car accident, way back when. Mary's lower leg was a bit deformed because the nurses had put a heating pad on her leg and then got busy. It ended up melting part of her leg. Ewwww. Honey bunny only wants me to use the heating pad on nights when he's there so that he can wake me up after 20 minutes of using it. I think that's a really good idea.
Tomorrow is my dentist appointment to get my mouth guards to wear at night. I'm actually looking forward to it because at this point, I'm willing to try anything to stop this continuous ache in my ear. It's been 7 weeks now of constant dull pain. I've become quite a miserable, little human being. I want my happy self back.
I have my next regular check up with Dr. C on July 18th so hopefully I will be able to report in that the ear thing is better by that point in time. We'll see.................
Meanwhile, I've used the heating pad a few times now. Not sure if it's helping but it feels really good while I'm using it. Unfortunately I worry that I'm going to fall asleep with it on and while it has an automatic shut off, what if it malfunctions? My mom befriended a little old lady named Mary when I had my car accident, way back when. Mary's lower leg was a bit deformed because the nurses had put a heating pad on her leg and then got busy. It ended up melting part of her leg. Ewwww. Honey bunny only wants me to use the heating pad on nights when he's there so that he can wake me up after 20 minutes of using it. I think that's a really good idea.
Tomorrow is my dentist appointment to get my mouth guards to wear at night. I'm actually looking forward to it because at this point, I'm willing to try anything to stop this continuous ache in my ear. It's been 7 weeks now of constant dull pain. I've become quite a miserable, little human being. I want my happy self back.
I have my next regular check up with Dr. C on July 18th so hopefully I will be able to report in that the ear thing is better by that point in time. We'll see.................
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