12-8-10 - more scans!

Thought I'd give you all an update -

I had a follow-up appointment with my surgeon yesterday. In some ways, I can't believe its been over 4 months since my surgery, in other ways they have been the longest 4 months of my life. I think I have come through it fairly well. 

The doc wants me to have a follow-up PET scan (from radiation) this Friday, which is freaking me out more than expected. I know, it's standard, but unfortunately, my worry is not listening to logic. Fortunately, the worry seems to want to be channeled into cleaning and organizing, something I usually despise. (kitchen cleaned, laundry done, papers organized...) Oh well, hopefully I will get the scan results before Christmas.

On a side note - my taste is mostly back, but the sweet flavors are weaker than normal. Very helpful for avoiding the pesky holiday cookie calories :)

11-20-10 Almost Thanksgiving

Hi all!  I just conducted a little scientific experiment - I made two glasses of water for myself and mixed sugar into one. Then I tasted both of them. I could taste the sugar!!! It was weak, but it was there!!This experiment was shortly followed by me tasting (yes, TASTING!!) a bit of salt out of the salt shaker!!!! I am so happy about this - you have no idea how nasty certain foods are with no sweet or salty flavor to balance them out. 

That is not to say that my sense of taste is back to "normal." Everything (except veggies, which I don't particularly like anyway) tastes a bit off. Sour is still much stronger than other flavors, but I think it will balance out eventually.

you all have no idea how happy this makes me!!!

11-14-10 Recovering nicely

Well, I am officially 18 days done with my 30 day course of rad, and I am doing pretty well. My energy levels are pretty much back to normal. I haven't started walking or working out in the mornings yet, but I think I am going to start this week. I did spend the last four days chasing my nieces and nephew - they wore me out - but I think that I would be worn out even if I had never had health issues. Those kids have so much energy!

The sore throat is almost gone, and while my neck/jaw are still stiff, it is minimal. My skin is almost normal - still dry, but no longer red. I thought the ringing in my ears was gone, but my ear started ringing as I typed this, but it was the first time in about week, and it only lasted about 5-10 seconds. 

I am still very much missing my sense of taste. I think I may have some sense of taste, but still no salty or sweet. My dad suggest I try a lemon yesterday to see if I could taste any sour, and there was a very mild sour taste on some of my tongue (a very weird sensation, but yay!). Still don't have much there. Some veggies have a little taste, but not much. On the bright side, since my surgery, I've lost about 25 lbs - 15 more and I'd be in the so-called "normal" range, but I don't think I'm going to make it. I didn't want to buy a whole new wardrobe anyway :) 


I do have a cute niece story (they are 4 years old) - My mom told them that because of the medicine the doctors gave me, candy tasted bad now. This very much confused them. "Just try one, you'll like it," one said. So I explained that I tried one, and it did taste bad - My tongue is broken, but it will get better. My nieces took it upon themselves to pack up a bunch (not just one or two pieces) of their halloween candy for me to eat "when my tongue is better." One of the best gifts I have ever gotten! 

Guess that's it for the updates. Hope you all are doing well.

11-3-10 working on recovery

Hello all!

Well, it's been a week and a day since my last radiation treatment and the improvement in my energy level is amazing!  I wouldn't say that I'm back to 100%, but at least 85% :). I've been working pretty much full time, although I did sleep in a half hour this morning. 

Another big step is that my appetite is coming back! It is not easy when I can't taste anything, but I am eating more and a bigger variety of foods.  My throat and mouth are still a bit sore and swollen, but not nearly as bad.


I do still really miss my sense of taste - I have been dreaming about food again. The other night, I dreamed I made a huge chocolate gob cake with a fancy raised design on top. I had extra icing, so I just sat down and ate the whole bowl of icing! It was delicious! That same night, I also dreamed of chocolate chip cookies.  Some folks have asked me what it is like to not be able to taste - I can still smell the food, but when I put it my mouth and chew I get no extra sensations - no sweet, salty, sour etc.

10-27-10 All done!

I am all done with my rad treatments.  Yay!  I know that recovery will take some time, but I am so glad to be done.  This experience has not been fun, but I would say it has definitely been less of a pain than I expected.

That is not to say I haven't had side effects -
my skin is burnt to a crisp - the doc says it will peel off with time
my throat is swollen and sore - but I am still kinda able to eat
I am SO very tired - but still able to work
my sense of taste is gone - doc now says it will be 2 months or more to come back, but it will come back
etc.etc.....

But, I have heard stories from people with so much worse side effects than mine, with cancer more widespread than mine, with so much less support from family and friends than I have had, with less/no insurance, and I realize how very lucky I am!

This is not something I would ever choose for myself or anyone, but it has made me more thankful for everything I've got - including  friendships from people like you :)


Post Script - They gave me my mask to take home - it is plastic - about 2 feet by 18 inches. and I am looking for ways to destroy it - any ideas? 

10-20-10 - 4 left!

Four to go (yay!)

I am really tired, so this is going to be a short post.  The doc is worried about the skin/surgery scar around my ear breaking down, so they gave me an antibiotic cream to rub on the area twice a day.  Other than that, not much has changed.... except, I am maybe more tired, another 2 lbs lighter, and I am closer to being done!

10-12-10 - Ten to go!

Hello all,

I don't have much new to report - I do miss my sense of taste. Every night, I dream about food - cakes with lots of icing, blueberry muffins, juicy strawberries, ham sandwiches.... I have no idea why ham sandwiches, but they were there - honest.   Today the doc said my ability to taste would be back a month or a little more after finishing treatment - so it may be a very yummy Thanksgiving! If not, it will be a delicious Christmas. 

He was very happy that my mouth and throat was not terribly sore, and he doesn't expect it to get much worse. I am still eating mostly normally.  (yay!)

I very tired of being tired. I am sleeping about 10 hrs a night, and I am still tired a lot.  I have been sleeping in, and going to work late a couple of mornings a week.  The folks at work are so understanding!

I think that is all the updates for now.

10-6-10 half way there!

I am halfway through treatment, so to sum up the events so far:

my ability to taste - gone
my energy - gone
the hair that used to be in that weird bald spot on the back of my head - gone 
any remaining stupid cancer cells - (hopefully) gone soon!
friends and family willing to put up with me when I am tired, whiny, and moody - still here (thanks so much all!)

Not much else to report except that I miss chocolate!

9-28-10 a wake of sorts...

Today, I bid a fond farewell to my sweet tooth. You will be missed.

After my appointment today, I went out to dinner with a friend, and I thought breakfast sounded good, so I got ham,eggs, and pancakes.  All went well until I doused the pancakes in syrup, took a bite, and thought, this syrup isn't very good....I made her take a bite, and she said, no the syrup is fine... I guess it will make loosing weight easier if I can't taste the sugar. Cookies and cakes will not be nearly so tempting. Luckily, I could still taste some of the other flavors of the food - the buttery pancakes, the egg flavor, and the salt of the ham, even if they were a bit muted. I am not looking forward to loosing other flavors.

 At the doctor's appointment they gave me a prescription for "magic mouthwash" - a mix of xylocaine, benadryl, and maloxx.  Apparently, if I gargle with it before meals, it will make eating and sleeping easier by numbing my mouth/throat.  Not sure if I need it yet, but I am sure it will eventually be indispensable.

Oh, and I am, at least so far, less tired than I was last week.  yay! 

9-26-10 Thanks!

I am SOOOO tired.  I am still working full time, but that, and getting my behind to treatments, are all that I have energy for.    Friday night, I slept for a solid 11 hours (9:15 PM to 8:30 AM) and I just vegged all day Saturday, lounging on the couch, taking naps, watching tv, ordered papa john's for lunch, took more naps, and then was back in bed by 8PM, and asleep by 9.
Luckily, today was much better.  I had more energy, so I went to church, then Mom and Dad came down and helped me clean my house (yay! and thanks!).  So, I have a clean house, and I am well-rested to face another week of work and treatments.   On the other hand, it is 6:56, and I fell like I am ready for bed again.  sigh...

OK, I didn't mean for this post to sound as whiny as it does...  I am glad I am still tasting food, my throat isn't sore, I have the energy to do the things I need to do, and I am capable of driving.  I am in a decent mood,and I know this treatment is for the best in the long run. 

8 treatments done, 22 to go...

9-22-10

A quick addition to yesterday's post....I think the weird stomach was the result of being very hungry.  They said I would burn more calories - I just hadn't translated this to I would be very hungry if I didn't eat more than usual.   I have been eating more often today, and I think that has taken care of it.

9-21-10 - week 1 is done!

I have finished week one of the radiation treatment!   So far things are going well. The only real side effect I've noticed so far is that my mouth is dryer than normal, but it isn't so bad I can't deal with it. An extra sip of water, piece of hard candy, or stick of gum takes care of it. 

Today, I was pretty tired, and my stomach was weird, but the doc and I both think that they are left over from the cold I had last week. 

So, I have several tips and tricks that I am supposed to be doing to help prevent/minimize radiation side effects.
     1) Brushing my teeth after every meal with a soft toothbrush. (3 times a day)
     2) Rinsing and gargling with olive oil several times a day. (this is kinda gross, but worth it if it keeps my mouth happy) (3 or more times a day)
     3) Rinsing my mouth with salt-water and/or baking soda-water. (Haven't started yet, but supposed to be several times a day)
     4) Apply moisturizer to my face (at least 3 times a day, but never within 2 hours before treatment)
     5) Fluoride treatments for my teeth. (once a day)
     6) Starting this weekend, swallowing exercises to help maintain the muscle tone in my tongue and neck. (3 times a day)

Add to that, the actual treatment once a day, doctors visits once a week, blood work every other week, trying to get enough sleep, and a  bit of light exercise, and I think I need a someone just to keep track of what I've done and what I've left to do!

9-15-10 One Down, Twenty-nine to go

Well, I had my first treatment today. The mask is even less fun when you can't breathe through your nose due to allergies (or a cold, but I am still trying to convince my nose it is allergies). It is so tight that I can barely open my eyes and mouth just a little tiny bit. 

for the next couple weeks, my appointments will be at 5:30 PM.  So far, so good.

9-13-10-finally a start date!

I finally got a call from the cancer center this afternoon. (I did call once this morning to check up on things)


My final simulation is scheduled for tomorrow morning, bright and early, and I'll start treatment Wednesday. I don't know for sure what time my treatments will be, but I'll let you know.

I have butterflies in my stomach just thinking about all of this, but I know I'll get through it.

9-8-10 no need to panic!

Hi all my faithful readers (all 5 of you)

Just thought I'd come on and say not to panic.  I haven't posted because there is nothing interesting to post.

I bought a new car last weekend. a silver Kia sportage.  I like it lots!

Someone, I won't mention who (JEN!), thinks my blog title needs to be revised, so I'll ask you all if you can come up with something better. Any ideas? 

back to waiting....and waiting....

9-2-10

Ok, so I have had 4 doctors appointments in 4 days... this is getting a little old.

Since my last post, I have had two appointments at Arnold Palmer Cancer Center.  The people there have been very nice.Yesterday, they told me all about all of the many various side effects from radiation. (Scare me much!)  They patiently answered all of question, and went over the radiation. Again.

Today, I went and got a CT scan that they use to plan the radiation (How much, from what angle, etc).  The weirdest part was that they made me a mask to fit my face and shoulders that they bolt down to the table so I can't move my head, and my head will be in the exact same place every time. They also put what feels like a big piece of jello jigglers (or ballistics gel) over my scar to make sure that it gets the right dose. The process isn't pleasant, but it isn't as bad as I thought it would be.   I was worried about panicking with the mask bolted down, but it is very light, and I could sort of zone-out while I was laying there.

The next step is that the doc has to look over all the scans and figure out exactly where to aim the radiation and at what doses. He'll also figure out exactly how many days I need (it will be 30-35 days).  This should take 7-10 days.   Then I'll go in, and we'll have a "dry-run" on the radiation machine. Shortly after that, we will actually start the radiation.

The worst part is the waiting....
 (at least, I hope that is the worst part!)

Post Script - Who is other?  I am curious :) 

8-31-10 "swallow" exam

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.

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.

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 !

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 :)

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.

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. 

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.

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.)

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. 

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.

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!