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!

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!

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!

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!

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.

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.

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.........