Today, I had an interesting experience.... the "swallow" exam. Basically, the stuck a camera down (up?) my nose and watched me swallow blue water and blue applesauce. The worst part of the whole thing was the placement of the camera. Then, my snot blurred up the camera, so they had to take it out and clean it, before they put it back in again. They numbed me up real good first, but it still wasn't really pleasant. ... the doc said "Some people have noses that were made for this. You aren't one of them." Other than that, the test was uneventful. It was kinda cool to watch my mouth/throat on TV while I swallowed. The doc even said I have "normal" swallowing reflexes.
There was also a physical therapist there who gave me a series of exercises to do minimize the damage to my swallowing reflex during radiation. Right now, they seem kinda silly - stick out your tongue, point it left and right. relax, repeat. I am sure they will help, though.
I also picked up the fluoride trays from the dentist yesterday. They fit well and aren't too uncomfortable. I only have to wear them about a minute a day, anyway. They will help me not get cavities as a result of the dry mouth from radiation, and I have to wear them for at least the next 6 months.
I am trying not to focus to much on the possible side effects of the rad...Most of the effects are "possible, but not guaranteed" but the more I learn, the more I don't really like what I am hearing. So far I may be tired, have dry mouth, tooth decay, trouble eating and/or swallowing, change/loose my sense of taste, loose my hearing in my right ear, have skin effects/burns on my face. They also cannot guarantee that the side effects will go away... So when I am grumpy in a month or two, please humor me and bring me a milkshake :).
In the way of good news, my dissolving stitches are really dissolving, and my scar is beginning to fade.
Tuesday, August 31, 2010
Saturday, August 28, 2010
8-28-10
I am bored, and curious how many people are reading my blog, so I made a poll. Please select the answer above which best describes you. thanks!!
Not much new today. I heard from the insurance company and they are definitely going to total my car. The good news is that the car was worth more than I thought. Dad and I went car-shopping this morning, and I found several good options. I have to wait to get the check from the insurance company to buy one, though.
For obvious reasons, I haven't been sleeping very well. So, today I took a two hour nap! It was lovely.
As far as updates on medical stuff, I have another test Tuesday afternoon, where they get a baseline on my ability to swallow, in case I have issues during the radiation. I have an appointment Wednesday morning at the local cancer center to meet the doctors there, and set up more details for treatment.
Not much new today. I heard from the insurance company and they are definitely going to total my car. The good news is that the car was worth more than I thought. Dad and I went car-shopping this morning, and I found several good options. I have to wait to get the check from the insurance company to buy one, though.
For obvious reasons, I haven't been sleeping very well. So, today I took a two hour nap! It was lovely.
As far as updates on medical stuff, I have another test Tuesday afternoon, where they get a baseline on my ability to swallow, in case I have issues during the radiation. I have an appointment Wednesday morning at the local cancer center to meet the doctors there, and set up more details for treatment.
Thursday, August 26, 2010
8-26-10
More good news - I don't need any dental work prior to radiation. I was very bad and hadn't been to a dentist since I moved here. Also, I was a little worried since I still can't "open wide" so I was pleasantly surprised by this news. The new dentist was a riot--very nice, funny, and thorough. It was probably the most enjoyable dentist visit I have had.
As for the car accident, everyone was fine, and walked away. My car may be totaled. I am a bit sore from the seat belt, but that is all. I think the airbags and other safety features did a great job. I can give you details if you want, but don't feel comfortable posting them on a public blog. I will say that I hope this is the push they needed to make what we all knew was a dangerous intersection a little safer.
In other good news, I ate a sandwich today--without cutting it into little pieces first !
As for the car accident, everyone was fine, and walked away. My car may be totaled. I am a bit sore from the seat belt, but that is all. I think the airbags and other safety features did a great job. I can give you details if you want, but don't feel comfortable posting them on a public blog. I will say that I hope this is the push they needed to make what we all knew was a dangerous intersection a little safer.
In other good news, I ate a sandwich today--without cutting it into little pieces first !
Tuesday, August 24, 2010
8-24-10 a good day!
I had a very good day today - got the PET scan results - clear! I also had appointments with the chemo and rad docs. They agreed I don't need chemo (yay!) and that I would need radiation (I knew this already). For 20 whole minutes, I got the attention of three (three!) radiation docs to answer questions and put my mind more at ease. All three seemed very competent. Also, they confirmed that I can get the rad about 15 min from my house/job, so that makes me very happy.
I followed these great doctors appointments with a wonderful dinner with the family. My 4 year old niece very cautiously came up to me and asked "Is you neck all better, auntie?" To which I could confidently reply "yes". She smiled real big and then gave me a great big hug :)
I followed these great doctors appointments with a wonderful dinner with the family. My 4 year old niece very cautiously came up to me and asked "Is you neck all better, auntie?" To which I could confidently reply "yes". She smiled real big and then gave me a great big hug :)
Monday, August 23, 2010
8-23-10 - updates
So, when I started this blog, I thought I'd update it every day or two... Clearly, I am not that disciplined.
On the bright side, I haven't posted because life has been busy and almost normal.
Updates -
The PET scan is very boring. First they gave me an IV - (harder than it sounds.. ask, and I'll show you the giant bruise on my arm where the nurse blew my vein). then, I got an injection of sugar labeled with F19 (a radioactive isotope). I had to sit very still for an hour (not even allowed to read!) and drink some sugar-free kool-aid with some kind of dye that helped them see my digestive system. The theory is that the radioactivity will collect in the parts of your body that are using sugar (heart, brain, recently injured areas, and cancer). After resting for about 45 min, they had me "eliminate the radioactivity" built up in my bladder, then go to the scanner. I got a CAT scan with contrast and then a PET scan. The scans lasted about 30 min total. I had to lay completely still. Very boring, and a little uncomfortable. The contrast produced the weirdest feeling of heat in my body. I kept my eyes closed the whole scan so I didn't get too claustrophobic.
I bought a new tv for my bedroom yesterday! I have been sleeping on the couch, because when I try to go to sleep in the quiet, my brain just won't turn off long enough for me to fall asleep. The new tv is very cool - it has wifi! I can get facebook, youtube, netflix, and nifty things. And, last night, I slept in my bed for the first time in about 3-4 weeks!
To answer Irina's question - I have dissolvable stitches under the glue, so don't worry about me falling apart.
I have appointments tomorrow with 2 different docs in Oakland. I am trying to prepare for the worst and hope for the best. I REALLY hope they have good news for me.
On the bright side, I haven't posted because life has been busy and almost normal.
Updates -
The PET scan is very boring. First they gave me an IV - (harder than it sounds.. ask, and I'll show you the giant bruise on my arm where the nurse blew my vein). then, I got an injection of sugar labeled with F19 (a radioactive isotope). I had to sit very still for an hour (not even allowed to read!) and drink some sugar-free kool-aid with some kind of dye that helped them see my digestive system. The theory is that the radioactivity will collect in the parts of your body that are using sugar (heart, brain, recently injured areas, and cancer). After resting for about 45 min, they had me "eliminate the radioactivity" built up in my bladder, then go to the scanner. I got a CAT scan with contrast and then a PET scan. The scans lasted about 30 min total. I had to lay completely still. Very boring, and a little uncomfortable. The contrast produced the weirdest feeling of heat in my body. I kept my eyes closed the whole scan so I didn't get too claustrophobic.
I bought a new tv for my bedroom yesterday! I have been sleeping on the couch, because when I try to go to sleep in the quiet, my brain just won't turn off long enough for me to fall asleep. The new tv is very cool - it has wifi! I can get facebook, youtube, netflix, and nifty things. And, last night, I slept in my bed for the first time in about 3-4 weeks!
To answer Irina's question - I have dissolvable stitches under the glue, so don't worry about me falling apart.
I have appointments tomorrow with 2 different docs in Oakland. I am trying to prepare for the worst and hope for the best. I REALLY hope they have good news for me.
Monday, August 16, 2010
8-16-10 back at work!
Today at work went pretty well. I am maybe a little more tired than usual, but that could be because I am not sleeping terribly well. Nothing very excited happened. I filled out a lot of paperwork, caught up on email, and even managed to get some work done. Everyone was very nice to me (maybe some a little too nice). If people being overly nice to me is my biggest problem, I figure that isn't too bad of a day.
I have my PET scan tomorrow. Wish me luck. It doesn't see like it will be too bad, except I have to get another IV in my lousy veins, and I can't eat breakfast tomorrow. Oh, and I am supposed to eat a low carb dinner tonight, so I think it is scrambled eggs again.
If you don't want to read something a little gross, quit now :). I think what was the superglue they used to glue me up is now peeling off my ear lobe and scar area in nice big pieces. It is kinda gross, but it will make the scar look less noticeable, at least in the short run.
I have my PET scan tomorrow. Wish me luck. It doesn't see like it will be too bad, except I have to get another IV in my lousy veins, and I can't eat breakfast tomorrow. Oh, and I am supposed to eat a low carb dinner tonight, so I think it is scrambled eggs again.
If you don't want to read something a little gross, quit now :). I think what was the superglue they used to glue me up is now peeling off my ear lobe and scar area in nice big pieces. It is kinda gross, but it will make the scar look less noticeable, at least in the short run.
Sunday, August 15, 2010
8-15-10 Postscript
PS - forgot to add I am so glad to be home. I feel almost normal and almost relaxed for the first time in 2 weeks!
I do appreciate ALL of the help and concern from my parents over the past weeks (and all of the bland mushy food they cooked for me).
Just as an FYI - that isn't a dig at mom's cooking - I am still only eating bland mushy things due the surgery.
I do appreciate ALL of the help and concern from my parents over the past weeks (and all of the bland mushy food they cooked for me).
Just as an FYI - that isn't a dig at mom's cooking - I am still only eating bland mushy things due the surgery.
8-15-10 general updates
I have been getting lots of questions about my upcoming treatments, so I'll tell you what I know for sure.
There. did you get it? I don't know much. Radiation will be coming up, I don't know when, how much, or for how long. Chemo may or may not happen. It has not been shown to be very effective with the type of tumor that I have. In order for all of this to be decided, several things have to happen first:
1 - I have a PET scan scheduled for Tuesday morning.
2- I'll have an appointment at the Hillman center (UPMC) in Pittsburgh sometime after the scan where treatment options will be decided.
3-I'll have to get all of the details set up at Arnold Palmer Cancer Center(UPMC) (in Latrobe) where I will get treatment.
The area has to heal before they start radiation, since radiation would slow the healing process, and could cause other problems.
The tumor that I have is rare, about 5000 people in the US have it at any given time, with about 1000 new diagnosis per year. To compare, there are about 100,000 new cases of colon cancer per year. The net result of this is that no one seems to know with anything like certainty what will happen in a few months, years, or decades.
Also, I think you all will find comfort in the fact that this is a slow growing type of tumor, so, you will likely be stuck with me for years to come :)
I am recovering nicely from the surgery. Every day, I feel a little better. That horrible full feeling in my ear is gone (YAY!!) and I have feeling back in about 50% of my ear. The lobe, and parts of the outer rim are still completely numb, though. Parts of my cheek are all tingly (a good sign that nerves are coming back to life). I am still a little more tired than normal, but that is to be expected.
The best part of the surgery has been a great combination - I've fit into shorts I haven't worn in years :) and I can eat ice cream at 10 AM with no guilt! (ok, maybe a little residual guilt, but I've lost 9-10 lbs in 1.5 weeks, I can use the calories.)
There. did you get it? I don't know much. Radiation will be coming up, I don't know when, how much, or for how long. Chemo may or may not happen. It has not been shown to be very effective with the type of tumor that I have. In order for all of this to be decided, several things have to happen first:
1 - I have a PET scan scheduled for Tuesday morning.
2- I'll have an appointment at the Hillman center (UPMC) in Pittsburgh sometime after the scan where treatment options will be decided.
3-I'll have to get all of the details set up at Arnold Palmer Cancer Center(UPMC) (in Latrobe) where I will get treatment.
The area has to heal before they start radiation, since radiation would slow the healing process, and could cause other problems.
The tumor that I have is rare, about 5000 people in the US have it at any given time, with about 1000 new diagnosis per year. To compare, there are about 100,000 new cases of colon cancer per year. The net result of this is that no one seems to know with anything like certainty what will happen in a few months, years, or decades.
Also, I think you all will find comfort in the fact that this is a slow growing type of tumor, so, you will likely be stuck with me for years to come :)
I am recovering nicely from the surgery. Every day, I feel a little better. That horrible full feeling in my ear is gone (YAY!!) and I have feeling back in about 50% of my ear. The lobe, and parts of the outer rim are still completely numb, though. Parts of my cheek are all tingly (a good sign that nerves are coming back to life). I am still a little more tired than normal, but that is to be expected.
The best part of the surgery has been a great combination - I've fit into shorts I haven't worn in years :) and I can eat ice cream at 10 AM with no guilt! (ok, maybe a little residual guilt, but I've lost 9-10 lbs in 1.5 weeks, I can use the calories.)
Friday, August 13, 2010
8-13-10 Eight days out
Well, good news and bad news...
The good news: The doc agrees that I am healing well. Going home (my home) today. Back to work on Monday. (I suppose it takes something like this to see this last bit as good news)
The bad news - 2/5 Lymph nodes had cancer in them. not clean margins. Definite Radiation treatments, maybe chemo. Ugh.
I made the mistake of googling the type of cancer that I have... doesn't look like good news to me. I am trying to remember that those numbers are based on studies done 20-30 years ago. The docotor made a point of saying this cancer is very unpredictable, and varies greatly from person to person. Is it so wrong to wish I had a cancer that was not unpredictable?
I am waiting to find out when my appointment is at the big local cancer center (Hillman cancer center), where we will decide for sure on treatment, then I'll get the treatments closer to home (Arnold Palmer in Latrobe).
I am sooo looking forward to going home. I really appreciate that mom and dad have taken care of me for the past week, but there is something to be said for sleeping in your own bed, and being surrounded by the things your are most comfortable with.
The good news: The doc agrees that I am healing well. Going home (my home) today. Back to work on Monday. (I suppose it takes something like this to see this last bit as good news)
The bad news - 2/5 Lymph nodes had cancer in them. not clean margins. Definite Radiation treatments, maybe chemo. Ugh.
I made the mistake of googling the type of cancer that I have... doesn't look like good news to me. I am trying to remember that those numbers are based on studies done 20-30 years ago. The docotor made a point of saying this cancer is very unpredictable, and varies greatly from person to person. Is it so wrong to wish I had a cancer that was not unpredictable?
I am waiting to find out when my appointment is at the big local cancer center (Hillman cancer center), where we will decide for sure on treatment, then I'll get the treatments closer to home (Arnold Palmer in Latrobe).
I am sooo looking forward to going home. I really appreciate that mom and dad have taken care of me for the past week, but there is something to be said for sleeping in your own bed, and being surrounded by the things your are most comfortable with.
Tuesday, August 10, 2010
8-10-10 - a quiet day
The wonderful-ness of being clean should never be underestimated. I washed my hair this morning for the first time in FIVE days! It was pretty gross. I think I spent 30 minutes under the hot water, gently washing and conditioning.
Other than that, today has been a quiet day. My appetite is starting to come back - this would be a very good thing if I could eat normally. As it is, I have to take tiny little bites and chew sooo slowly. Despite this, I think I've eaten more today than I have in while - a whole banana for a snack!
Probably the most annoying side-effect so far from the surgery is my "wooden ear." Basically, most of my ear is completely numb, so it feels like someone has pasted an ear on the side of my head. Plus, the ear feels full, like it needs to pop, but I can't get it to pop. Some folks I've talked to online who have been through this procedure told me to expect this, and I, naively, thought "How bad can it be?" It is not fun, but the good news is the feeling there is supposed to slowly come back.
Yesterday and today I have also started to have the nerves in parts of my face and ear "waking up again" after surgery. As much as I try to enjoy it, this is also not a pleasant experience.
Thanks again to everyone who has prayed for and/or sent happy thoughts/messages to me and my family. They are VERY MUCH appreciated.
Other than that, today has been a quiet day. My appetite is starting to come back - this would be a very good thing if I could eat normally. As it is, I have to take tiny little bites and chew sooo slowly. Despite this, I think I've eaten more today than I have in while - a whole banana for a snack!
Probably the most annoying side-effect so far from the surgery is my "wooden ear." Basically, most of my ear is completely numb, so it feels like someone has pasted an ear on the side of my head. Plus, the ear feels full, like it needs to pop, but I can't get it to pop. Some folks I've talked to online who have been through this procedure told me to expect this, and I, naively, thought "How bad can it be?" It is not fun, but the good news is the feeling there is supposed to slowly come back.
Yesterday and today I have also started to have the nerves in parts of my face and ear "waking up again" after surgery. As much as I try to enjoy it, this is also not a pleasant experience.
Thanks again to everyone who has prayed for and/or sent happy thoughts/messages to me and my family. They are VERY MUCH appreciated.
Introduction (8-10-10)
Welcome to my new blog.
I am creating it so that friends and family can follow the medical journey that I am reluctantly embarking on. My plan is to update it regularly, and to go back and review a bit so that everyone can see a bit about how I got here.
As hard as it is to wrap my mind around, it seems I have cancer. We (my doctors and I) discovered this during surgery to remove what we thought was a benign tumor in my parotid gland five long days ago. As of today, I am still waiting to read the final pathology report this coming Friday. (For those of you, who, like me a few short months ago, have no idea what a parotid gland is - it is a saliva gland located pretty much in front of and slightly below your ear)
The docs are recommending radiation therapy, but I don't know all the details about that yet.
I guess that is the general background. Wish me luck on this journey - I hope you never join me!
I am creating it so that friends and family can follow the medical journey that I am reluctantly embarking on. My plan is to update it regularly, and to go back and review a bit so that everyone can see a bit about how I got here.
As hard as it is to wrap my mind around, it seems I have cancer. We (my doctors and I) discovered this during surgery to remove what we thought was a benign tumor in my parotid gland five long days ago. As of today, I am still waiting to read the final pathology report this coming Friday. (For those of you, who, like me a few short months ago, have no idea what a parotid gland is - it is a saliva gland located pretty much in front of and slightly below your ear)
The docs are recommending radiation therapy, but I don't know all the details about that yet.
I guess that is the general background. Wish me luck on this journey - I hope you never join me!