Tastebuds shutdown and a sunburn in the mouth.

I woke up again with a head aching.  Yesterday my tastebuds turned themselves off. 

We went to dinner at Panera and their yummy baked potato soup didn't taste like anything. 

I still managed to eat the entire bowl just about, had part of Sheila's grilled cheese with it too, along with a baguette of french bread. 

Also, I began to experience this pain I can only equate to what it would feel like, if you got a sunburn in your mouth.

It came upon me sometime in the middle of the day and will be something I'll have to get used to.

When I take a sip of water, it hydrates my mouth and feels good. A mere few seconds later, I feel this dry, burning sensation sweep across my mouth. It still feels somewhat wet in there, but the sensation is one I've never felt before. 

It's horrible.

Still experiencing patchwork nerve pains too. You already know how much fun those are, so I'll spare you the details.

29 more days, 21 treatments and a bag of chemo to go.

On a brighter note, an amazing friend sent me this amazing gift that arrived yesterday. I believe he hand studded this for me. It was such a nice surprise. I cried on the phone as I thanked him. 

I'm so lucky to have such amazing friends. 

Shirtless and in pj's as we were winding down about to watch The Avengers before going to bed. My skin has started acting up as a reaction to the radiation. The docs said its no where near the site Im getting the treatments, but I know my skin. It's real pissed off at the moment and itchy. Going shirtless is more comfortable for me at the moment.   

: (

I just woke up from a pretty decent nights sleep. I was dreaming I was in a convenience store, buying some "Big league chew" bubble gum.


It feels like someone is holding a hot fire poker against my throat!!!!!!!!

Holy shit.

I don't think I've ever experienced pain on this level before, it hurts so f!#%^ing much.

He told me this would happen and boy, was Larry right.

 : (

Inside the machine..(photos)

The rad team was nice enough to let me snap a few pics this week. I'm going to ask them for a shot of the computer screen that shows the levels of radiation I am getting. Its pretty intense looking. Shouldn't be an issue, they're such an awesome group of caring people.

I call this one, "Inside the machine"

This is the Tomo Machine that gives me the dose.

A head shot inside the mask. Even though the mouth is partially opened, it doesn't feel that way when I'm wearing it. My pulse still rises when they first clamp me down. All of the tape you see is to mark where the radiation is beamed. The eye socket tape is for comfort, as the plastic is a bit rough. So glad they have a boom box in the room, it makes the experience a little more tolerable.

3 down, 3 to go..

Just home for another weekend of rest from RAD therapy. This morning was a bit surreal, as the neck hair on my beard simply began to shed itself, from the effect of the radiation. 

It was as if I had shaved it myself, but a cold, wet washcloth simply wiped the hairs from my neck. 

Weird shit. Almost dream like watching it happen.  

I knew it was coming, just didn't know when and it looks like week # 3 was the draw. 

At least I don't have to worry about shaving over my scar. (BONUS!!) 

My throat is hurting more and more, and my mouth tastes disgusting. I have to get up in the middle of the night, every night to rinse out with my special mixture. I rinse a few times during the day too, to keep the bad bacteria at bay.

Have to admit, I am a little worried if my teeth will begin to disintegrate once I'm through all of this.  I am taking the best possible care, its really out of my hands though.

Really hoping next week will be my last round of Chemo. I'll find out for sure on the 5th from Dr. G if I'll be getting that 3rd bag of Cisplatin. Fingers crossed I won't.

The patchwork pain has been surfacing here and there. Im dealing with it as it comes upon me and telling myself that fantastic quote Larry has tattooed on his arm...."Pain is weakness leaving the body.."

It helps. 

Thanks for continuing to follow me as I finish this bitch off once and for all.

;]

T

Side effects.

One of the worst side effects is how food tastes, or doesn't taste. Its depressing looking at something and wondering if its going to taste good or not. Most of the time, it doesn't taste like anything. 

But I have to keep eating.

I don't want the feeding tube inserted into my stomach. And I'll do everything I can to make sure I don't get one.

Some of the things that still taste good are:

macaroni and cheese, tuna fish w/ miracle whip, bananas, hamburger helper (italian flavored), bagel bites (w/pepperoni), vanilla ice cream, yoplait strawberry/banana yogurt, cheeseburgers, beef stew w. potatoes. There are a few others, but they escape me at the moment.

I can't wait until food tastes good again. 

My mouth is starting to get sore, and this morning, I noticed my throat is beginning to hurt. They told me this would happen due to the radiation. It was only a matter of time.

I also have what my PT Larry calls, "Nuke spit". Its when the saliva begins to change into a stickier substance. When normal people spit into a sink, it runs down the side of the basin.

My spit sticks to it and doesn't move.

During the day, Im not too affected by this, since I am drinking constantly. It happens more over the night while sleeping. It leaves a pretty ugly taste in my mouth. Sometimes, I have to get up to rinse out with my 1/2 baking soda, 1/2 salt rinse. That combination also helps with the soreness in my mouth.

The muscles in my neck are taking a beating. They feel achey and tight from being microwaved.

Im starting to get these bumps on my neck, shoulder and upper back. They aren't pimples, but red and raised up. I'll mention it to the docs on Tuesday (Tuesdays are the days I see the MDs after my dose). 

I'm sure its another side effect as they seem to have cropped up the past 2 weeks. 

They aren't painful, but sure do itch a lot. 

Patchwork pain and the ringing..

Just back from week #2 of radiation. I lost an appointment this week (Thurs) due to the Tomo machine having issues. Better it has issues while I'm not inside of it I suppose..

They'll have to add an extra dose at the end to make up for it. I'm crossing my fingers it doesn't keep happening. Each time it does, there's one more dose that will have to be made up.

On Wed, the team was having trouble getting me calibrated during the initial scan and had to scan me 3 times. I was inside of the mask for about 20 min before I finally lined up correctly with the lasers for my  7 min dose. 

I was patient, but it did get a little tense for a second. I remember telling one of the techs, Uhh, ok, Imma need a break here in a second to regroup. To which the reply was, No, we can't give you a break...

(that hit home for a second and I sprinted to my happy place as fast as I could, pushing the anxiety around the room and out of my way)

One positive at least was, they had a nice boombox in the corner and Bob Marley's Greatest hits on CD  on hand. I asked them to cue it up and let that fucker roll. 

ahhh....

Once the treatment was over, I headed back for my mid morning breakfast and a small nap..

That's when the patchwerk pain decided to show up.

I was in the midst of a light nap when all of a sudden I was awoken by what I can only describe as being struck by lighting, or what it must closely feel like. 

This pain came out of no where, into my neck and arched down into and past my collar bone. It literally felt like electricity was being conducted through my body.

I could only scream out, and to no one for help. I was alone. 

The pain came and went like a rolling storm and lasted for a minute. It was the longest 60 seconds of my life I think. 

There wouldn't be any further napping at that point, so I elected to do a few laps up and down Paw-paw's graveled driveway, walking slowly under a beautiful canopy of trees.  

Luckily, the pain hasn't come back since then. I am not looking forward to when it does either. It was brutal.

I described the pain to my RN Mary Ann and she went and grabbed Dr. Ortcutt for me. Once I explained it to him, he actually told me it was a good thing this had happened. (really? sure wasn't goodtimes for me!)

He explained that that pain was the first of my nerve endings waking back up and beginning to repair themselves.  I told him that pain was very different from the earlier nerve pains I had experienced after the dissection surgery, and he further concurred that it was and will be. 

The Dr. said the pains would come back in whats called--Patchwork patterns. (awesome.....)

I am still getting the ringing in my ears from the chemo treatments which, isn't much fun at all and start to almost drive me mad sometimes. Its not all day, but comes and goes as it pleases.  

Sheila's grandparents have this yorkie named Oliver, who hasn't been fixed yet, and the fucking dog just barks and barks and barks.  I know they won't have his balls removed before I'm done, so a lot of time, I rest in my room and either nap, or watch DVDs. 

My ears are more sensitive than you could imagine. Loud noises are not fun. 

Week 2 down, 4 to go plus one extra dose at the end..Next round of chemo is set for Oct 5th. 

Can't wait! (yes, I am being overly sarcastic..Chemo sucks and I am real lucky to only have to receive so much of it.)

Have to give a HUGE shout to Dr. Read on the Rad Onc unit. I found out he buys cases of Ensure with his own money and gives them to us patients for free!!  

Can the man be any nicer?  

I mean, each of these docs is destined for Sainthood I tell you.  Ensure isn't cheap by any stretch, and he is saving his patients a lot of money and time, with this amazing act of generosity, humanity, and love. 

Thanks so much Dr. Read! God Bless you sir! 

See you soon. If I get to the facility early, I might log on here and there to post a new entry on their wifi.

Week one of Rad and Chemo down..

It feels so good to be back home. I really missed Sheila and our cat Sefu.  

The first night, I didn't get my chemo drugs down correctly and almost got sick. That wasn't fun at all. I should only have to take them until tomorrow per the doctor's order. 

I can't feel, smell or sense the radiation they're beaming into both sides of my neck (Dr. Read suggested we hit the other side of my neck too, just to be sure, no arguments from me in that regard.)

They scan me first to make sure its aimed correctly (about 7-8 min), then pull me out come in press a few buttons, and then the dose starts for 7 min.  The atavan they prescribed me, helps calm me down a lot wearing the mask. I have to admit, when they first clamp me down, my pulse rises for a few min, until I can breathe it back down.  Drifting away in my head to happier places, does help. 

The 7 min dose wipes me out. I feel for the patients that have a higher dose, and at longer intervals.  :(  

 I am so lucky to have Paw-Paw driving me to my appointments. Granted, I'd make it back to their house, but the company is nice. I think next week, we're going to stop at a local eatery for some biscuits and gravy after my appt. Its a mom n pop operation and Paw-Paw gives it the green light.

Once back at their place, I have a little breakfast and have to lie down for a nap almost immediately. Usually Im down for about 2-3, sometimes 4 hours and feel a little better at that point.

Still getting the hang of the dental soak I have to do at night. The past 2 nights, hiccups have plagued me and it makes it tough to get through the 15 min of it. 

I returned the jet pack to verizon. The idiot salesman actually thought I'd be dumb enough to "purchase" a boosting antenna.......

I said, if you're giving it to me for free I'll take it, since I wasted all of this money for a product you said would work and hardly did. 

No response...

I was proud of myself for not losing control and acting up. The original saleswoman said, oh , im so sorry it didn't work....I left her with a "Yeah, me too...Thanks..."

Any ways, more over the weekend possibly. Thanks for following and sorry for the delay...

At this point, I won't have internet access from Mon-Friday afternoon since Verizon fell short on their end of the bargain. So, please stay tuned for weekend updates. 

God bless,

  T

blog will be down till the weekend...

So, im out here in the woods, literally. I love the peace and quiet. (sans the barking yorkie named Oliver..)

I wont be able to post anymore blogs until the weekend...

I bought Verizon's "Jet pack" and it didn't come with jets. Its came with lies. 

I was told, then shown via their site, that this little box had coverage where I would be staying, and was told, "you might even get 4G too!!!"  (yes, based on the address I would be at. Its a new model, no issues except getting one bar or service, then vanishing....then maybe one bar a few min later....i've gotten 2 bars out of 3 and those 2 drop quicker than you could fathom.)

136.99 + 60.00 for 3GB for one month, and its maybe worked all of 2-3 times. 

What a waste of my money and time.  Im going by there on Friday when I am back and they're giving my money back, not charging me the 35.00 restocking fee and I want my 60.00 back too for my "3GB".

: (

Day 1 : IMRT and Chemo

Got here at 745am, and we're now just getting started..I didnt get my radiation this morning, since there was something not working correctly with the machine, so we'll be heading back down for that later. 

Currently sitting on the infusion unit, getting my IV bag of magnesium, sodium chloride and something for nausea. Once their done, ill get my Cisplatin. 

Still a little anxious, but am at least relieved we're underway..


Almost finished with my bag of Cisplatin..then its down to the basement for radiation. Here's a pic of me showing this Chemo shit, who's BOSS.

Let's do this.

Just spending the day getting my things together for the trip down to UVA. Tomorrow is the big first day that will be a radiation and chemo day for me. 

Feeling a little nervous, who wouldn't be right?, and I'm anxious to get this started and over with. 

I have a lot to look forward to.

Well, ill update you during the first day. Thank you again for being with me, praying for me, sending me vibes and energy. 

Here we go...