First post radiation appt.

Went down to UVA yesterday to meet with Dr. Read for my first post radiation follow up appointment.

I must selfishly admit, it was a good feeling knowing I was there for a quick visit and not another dose of radiation. I cringed a little when I walked by the room I used to get treatments in.

I ran into my awesome Radiation nurse, Kara when I walked into the back. She's taken great care of me over the course of my treatment. Listening to me bitch and complain about this and that.  Kara weighs me and checks my vitals upon arrival. 

I couldn't believe how much I weighed yesterday, but the scale came up at 149.8 lbs.  

 In June, before my first surgery, I weighed 176 lbs.  Thats a difference of 26 lbs. 


 Kara was nice enough and recommended a drink to help cut through the mucus that's been plaguing me for the past 4 weeks.  Im hoping that over the next few weeks with rest and this shot, I'll start to get better faster. 

In a shot glass:

real lemon juice
1/4 teaspoon ginger
1 tablespoon of pure honey

Surprisingly enough, I can actually taste the ginger. I almost still can't believe it either. My tastebuds are still quite compromised, but I can still taste ginger. Weird....I know.

It was great to see Dr. Read. He always greets his patients when entering the room with "God Bless you." 

Which, I've never seen another Dr. do in the 30+ years I've been alive.  Simply amazing imo.

He took a look and said the area is healing up nicely. Its now white back there vs. being red and irritated from the radiation. I still feel pain when I yawn, burp, sneeze and cough. (ugh..)  

I did notice a difference with yesterday's first lemon shot I took, so, keeping my fingers crossed we stay on that path.  I did spit up a few times yesterday, but it wasn't as much and wasn't all day and night long. 

It felt good to sleep through the night without having to wake up to clear my throat. 

My radiation sunburn started to go away last night. It had been a few hours after my shower and Aquaphor application, when I noticed some of the skin started to fall off on its own.  

I went to the bathroom and with the help of some toilet paper, was able to wipe off all of the old, dead, burnt skin that once covered my neck. It looks pretty good and I should be out of the woods in that regard.

Next up! Going back to UVA for my first post surgical/radiation/chemo CT scan. Fingers crossed I get a good report.

T

Torture of the senses.

In everyday life, we probably take our senses for advantage and don't even know it. The normal use, with wear and tear, goes unnoticed.

Food smells good, food tastes good, you eat it. Repeat and rinse.

When you have any sort of neck or head cancer that requires radiation, your tastebuds will be affected.

The worst part about it, is how I can SMELL food, but when I eat, it tastes like horrible nothing.

There are so many things I can't wait to eat again. Here are some of the foods I really miss being able to taste.....I've stayed away from most of them for the time being.

PF Changs Chicken Lettuce wraps

PF Changs Seasame Chicken with rice

Outback Steakhouse Filet wedge salad

Panera Bread's Baked Potato soup

Whole wheat spaghetti w/ turkey burger and garlic bread

Chicken cheese steak with provolone cheese from the deli at work

Egg and cheese on wheat from the deli at work

A Spaghetti squash dinner that some good friends of ours have made for us in the past. Its out of this world!

Sushi. 

Ahi tuna app from Mama Kwan's in Kill Devil Hills

Duck Doughnuts (also in Kill Devil Hills)

Pizza (papa johns, and pizza hut)

5 Guys

The awesome chicken purses that my wife makes. They are amazing to say the least. 

Wheat Waffles 

Turkey Bacon

English muffins

soft baked Chocolate chip cookies

Tippy's Taco

and on and on and on.....

Gosh I can't wait to taste food again.

One week of recovery behind me...

Well, it's been one week since my last radiation treatment. I am still feeling pretty crappy. In addition to spitting up saliva and mucus all day long, my nose is constantly running or drying up. 

Sometimes, I try to blow my nose and its like nothing comes out, but it still continues to feel wet, like I NEED to blow my nose. 

The spitting really is out of control. The mucus is much worse and I pretty much am gagging and nearly choking on it I can't get it out of me fast enough. Its so gross. 

I've notice a few times there's a little blood mixed in too. Nothing too alarming, but I've noticed when I feel a rough type of pain, the phlegm will have some blood with it. 

I can imagine my throat and mouth have begun their repairs. The Doctors told me that radiation effects everyone different, but the common denominator is that when you get hit with it, its a few days later where you feel the effects of it.

Being one week out, I can only assume that the repairs are underway and my body's defenses have kicked into gear. 

Another unpleasant side effect is my body's temperature, or should I say my body's external temperature. 

I feel cold all of the time.  I could have a shirt on, sweater over that, and still feel like I need to wear a sweatshirt over that. Its crazy. 

 Last night, I couldn't get in the shower fast enough and if my body was out of the range of the water, I would begin to feel cold. 

Once out of the shower, I couldn't get dry fast enough or a robe put on before I felt as if I were freezing and then into my pajamas to begin to wind down for bed.

8 days out...Im due back to see Dr. Read on election day for a follow up, since I've been in such pain. 

Im going to ask about these other side effects. 

I am really looking forward to seeing how I fare next weekend. Hopefully I'll be feeling much more better. 

Its a slow burn recovering from being burned in your head and neck for 6 weeks, low dose or not. This radiation therapy has cleaned my clock. 

Staying positive though. 

Back home and a Fever.

On Friday I had my final radiation treatment. I couldn't wait to get off of that table. I had a change of heart and told them I didn't want to keep the mask after all. 

I want to be able to put all of this in the rear view and not have any reminders of that hell. I'm still going through it with the pain and recovery. 

Last night got real interesting. Around 9pm, I started to develop a Fever and it was almost 102 degrees.

I can't believe I made it through all the radiation and those doses of chemo and now get a Fever...

Called the on call MD who told me that if it got any worse, or if I got chills again (I had them for 15 min), or just felt like something was wrong, to head to the ER. 

I immediately jumped on taking some Children's liquid Ibuprofen and downed two bottles of spring water. 

Once Sheila made it home around 1045pm, I re took my temperature around 11:15pm and Thank God, it had gone down to 100 deg.  

I set my alarm for 130am, woke up with that cool, sweaty feeling on my chest and back and just knew the fever had broken.

Checked it and it sure did, was right back to 98 degrees. Can't tell you how relieved I was and feeling better.

It was odd, the right combination of pain meds actually took all of my throat pain away during the Fever. I haven't drank water that quickly (by sipping, not chugging) since before starting radiation. The nuke-spit makes even water taste gross. I switch back and forth between that and Gatorade. It helps.

The pain was right back on me though, come 6:30am today, in full regalia, and kicking the crap out of my throat, even after pain control.  

I have to keep drinking water, but do it minimally, as the pain of swallowing is just too much. 

At least the radiation sun burn is starting to calm itself.  I'll take any break I can. 

Hurricane Sandy is on her way to bring forth some serious wind and rain. The news reports say our area is guaranteed to lose power. Its going to really suck for us if it does. 

I wish we had a generator now, but they're way to expensive for the budget Im currently on. Once I get back to work, I think I'm going to invest in one. 

Especially if we get hit with a bad winter this year, after being spared last year.

The absolute worst..

These last few days are the absolute worst. my throat hurts so much, the liquid pain control is barely touching me. when I burp, it feels like my throat and mouth are seconds away from exploding.

The morning brings nothing but immense pain and hacking up of spit and mucus. I couldn't even finish my protein shake my throat hurt that badly. My throat hurts all day long. I must be gargling with salt water about 25-30 times per day at this point. It helps, but only for about an hour and then, Im trapped in the thrushes of pain.

2 more days left and the seconds crawl by with the speed of a slug.

Oh God, please help me!!

Radiation sunburn.

The skin on my neck is super unhappy.  When you receive radiation to your body over a period of time you get whats called "Radiation Sunburn".   Its horribly uncomfortable, painful, itchy and has to be kept moist with lotion all day long.

One downside is, I can't have any lotion on my neck when I go in to receive the dose of radiation. My neck has to be clean and dry.  This isn't a huge deal when Im going Tues-Fri, but my Monday appointments are in the afternoon, so I can't put any on until after 3pm.  

The skin starts to dry and crack open without anything on. 

It looks like I have sun poisoning on my skin in the areas just above my collarbone. The skin on the Right side is faring worse because I receive more radiation on the side that had the cancer in it.

I have a medium sized circle on my Left side that is puffy and red. Sheila mentioned it looked leathery. If you look at the other side closely, it looks like I was burned by fire, the way the top layer of skin is missing from a few parts of the area. 

I have to be careful of how warm the water in the shower gets. Too hot of a temperature and Im in big trouble. 

Only 5 more sessions left. Im getting more and more anxious as I approach the end. The past 6 weeks, let alone 4 months have been hell. I need a break from all of the poking, prodding, palpating, injecting, radiating, etc.. 

I sit and think of how amazing it is I haven't gone temporarily mad from it all. 

Because I can see how a lot of people do.

Almost there...

Im so glad I had Sheila with me this past week..It's been sheer hell. 

They said it would get worse near the end, and it is. 

My PT told me a while ago, "Around the 4th week, you won't want anymore...They'll call me to come down there...Ill drag you into a room, you'll cry..we'll cry...we'll hug, and I'll kick your ass back onto that table.."

I can see what he meant. I can see how people want to give up.  Radiation and chemo are nothing but pure horror. Plain and simple.  

Sheila heard one patient who walked in, and was asked how he was doing (by the receptionist..) he said...I'd rather have my head in an Oven.

 Except, Im not giving up. Im finishing this, healing for a few weeks and getting back to work, life, etc..

I miss it so much. 

The infection from the chemo came back this past Tuesday on her birthday.

Im on a liquid antibiotic that my insurance didn't cover...it was $80.00 fucking dollars for 250 ML..."and its the only one we can give you Tony, Sorry!!!!"  

(awesome.............)

 It tastes so terrible, I can't even describe it. I almost threw up a dose one night, but had to choke it all down. 

Im on it 4x's a day at 2 1/2 ml per dose, via a plastic syringe.  Once I finish it, I have to take my other liquid med so I don't get Thrush (yeast infection) in my mouth again. 

At least that medicine tastes ok. 

My mouth is on fire all day long and I am up dozens of times during the night to spit that nuclear wasteland from my throat and mouth. 

Its like something from the film Aliens. (you know, that stuff they spit and cocoon their captive hosts in for impregnating with those face huggers?)

Yeah, it looks like that stuff after a few min.

I spit all day long, and all night. I maybe get about 2-4 hours of sleep per night, if that..

And that's when the ringing in my ears from the chemo decides to quiet down, when it does.

It's gotten so bad, its affecting my hearing. So much, I didn't hear my alarm go off this morning to get up for radiation.  : \ 

It rings in both ears, then one, then the other, then both and repeat...and repeat, and repeat. Its almost like it never shuts off.  A simple fork hitting a plate crushes me. Its incredible how people don't go mad just from that alone.

Sheila has been amazing.  I feel so bad getting up so often during the night. 

 Her patience, caring and love know no known human limit. I'm so lucky to have her.  

 Im so lucky to have all of you too. 

I thank God, for my family, friends, co workers, management team, the company I work for, the people around the world that are sending me their love and energy, some of whom I'll never know or meet.

It pushes me, even when I start to crumble.  

I can't wait to be whole again...I can't wait to be a father and a husband again. 

I've walked around half my life not being patient, flying off handles, reacting...

This cancer has brought a lot into perspective for me. 

 It's going to change me for the better. 

Worse than the flu..

My Physical therapist told me it would be like the flu. 

I think its worse actually, at least you can't smell the flu coming out of your pores, like I can this 2nd and final round of chemo. 

Lets say this mornings shower was nothing short of amazing.

Hopefully, I'll start feeling better by tomorrow afternoon or Tuesday. 

: (  

Today will envole more napping and fluid intake. Going to try some chicken noodle soup. The ensures are going down ok, but wow...the chemo has really had an impact on my appetite. 

Everything tastes like nothing.

Holy !@#$ this is the worst..

This second round of chemo is the fucking worst. Woke up at 330am needing to void my bladder and just about got my Zofran anti-nausea med in me and again, in the nick of time.

Im achey all over and thought I was starting to get a fever when I got up for the day, but luckily didn't have one. 

My patchwork pains are hitting me at different intervals again. They come out of no where, like lightning from the sky. Or, should I say from the ground up. 

In my case, from the neck up, or even down.

I feel like crap, but at least my ''stomach issue'' I had from last week has finally subsided, which is a plus, since now I don't smell like crap. (hey, gotta find the silver lining somewhere..heh.)

Im tasting that classic metallic taste in my mouth too. Nothing like some metal mouth to ride shotgun with the radiation throat pain.  : \ 

I took my other anti-nausea med a little after 5am, instead of 6, to stay ahead of the bell curve and on top of the nausea. Its so much stronger this time around, as are the aches.

Today is going to involve a lot of bed surfing and maybe I'll surf the breakers on my couch and watch some movies.

Gosh I feel like crap. Ugh..  

wow...

This second bag of Chemo is kicking my ass. 

Can't wait to head home, I am wiped out.

Chemo Round 2

Just getting settled in and receiving my bag of magnesium and sodium chloride for my second and last round of chemo. From the way they explained it to us, the 3rd round is something I can either elect to have, or pass on. Im passing on it, no thanks! 

Dr. G mentioned my white blood count being low, but not enough to merit me not getting today's dose.

There is a sight chance I will get a fever and infection, something we'll have to keep an eye on.

My stomach has been upset since Wed, so I'll have to leave her a certain sample before going home today. She thinks I might already have an infection. Fingers crossed I don't.  

If I do, it will mean a fever for sure, antibiotics and the dreaded Thrush coming back. 

I'll be back on throughout the day as I'll be here for about 7-8 hours. 

Thought I'd add a pic that shows the amount of radiation I receive with each treatment. It also shows the R side is receiving more than the Left. The guys on my team were nice enough to show me this earlier in the week and sent me a screen shot of it.  Lasers!!

 I feel more and more drained with each treatment. Im starting to get the radiation ''sunburn'' on my neck too and sleeping on the right side has become a challenge. The muscles are sore from being microwaved.

Be back Friday the 5th during chemo round #2

See you there. Hope you all have a nice week.

T

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...

The Radiation and Chemo Super friends.

I just got back from my mask fitting and it wasn't fun at all. As you can see, it goes part way down my chest. It went on wet and got firmer by the second as it dried and molded to my body. 

Even though, I tried to transport myself to a happy place, it was a little too much for me. 

I wasn't allowed to open my eyes, or mouth during the entire process, which with CT scan lasted 20 min.

It felt like an hour.

Im so thankful it's over..  

Below is a picture Sheila snapped before having to leave the room.  Beneath it are pictures of the radiation and chemo friends that are guiding me through the rest of my journey. I'll still see Shonka and crew at the clinic once I'm through with treatment, and every 3 months for follow up appointments.

Here is my Chemo MD, Dr. G, who I met 2 weeks ago.  She is amazing and was so warm and welcoming to Sheila and I.  She's the best! The camera picked up what I believe is her aura, its blue and beautiful, just like her. 

Finally, the members of my Radiation therapy team..From Left to Right, Dr. Wilson, me, and Dr. Read.

I am so thankful to be receiving treatment at UVA. I can't think of any other place I'd be. 

Back to UVA!

Heading down to UVA tomorrow for my follow up with Dr. Shonka, Nguyen and the team. 

Afterwards, we'll grab a bite at our favorite mexican restaurant Guadalajara.  Sheila's Paw-paw wants to hit one of the other locations. (they have 5 in the area)

 I have to admit, the last time we ate there, our server seemed like she was somewhere else, like in a galaxy far, far, away...

Then, we'll scoot over to see Dr. Read and I'll be fitted for my mask and will receive a CT scan before heading home.

Hoping to run into Dr. Levine so I can get a pic with him.  He's like a unicorn in a sense, magical and you never know where he'll be from one second to the next...

Thanks for keeping up with me!

:)

T

You know what, fuck that...

FUCK YOU CIGNA. FUCK YOU. FUCK YOU. FUCK YOU. FUCK YOU. 

I DIDNT HAVE A PRE EXISTING CONDITION FROM APR 2011-JUNE 2011. 

I DIDNT GET CANCER UNTIL 2012. WTF IS YOUR DEAL??!!  

YOU DON'T WANT TO PAY ME FOR A BENEFIT THAT I PAY INTO ALL YEAR LONG?  

WE'LL SEE ABOUT THAT...

YOUR LACK OF COMPASSION REEKS LIKE THAT OF HUMAN DECOMPOSITION. 

AFTER I TELL YOU I HAVE TO REALLY WORK TO FILL OUT YOUR FORM, YOU'LL GET IT FAXED IN THE MORNING, YOU MEET THAT WITH A SHITTY "OK" AND HANG UP. 

FUCK YOU. YOU HEARTLESS FUCK.

WE'LL SEE ABOUT THAT....

(THIS ASSHOLE, DIDNT EVEN TELL ME WHEN HE FIRST TALKED TO ME, THAT I WAS GOING TO BE "INVESTIGATED" WHAT KIND OF CUSTOMER SERVICE IS THAT??)

First shave in a month!

Yesterday I felt safe enough to trim down the jungle of growth that took residence on my neck and face. Thankfully, the guards on my clippers glided the vibrating blades across the scar on my neck.

I still felt a little uneasy doing it, but took my time and went slowly over the area. 

It didn't turn out Picasso-like, but none the less, I got most of it down. 

Later this morning after my PT, I'll do another run and might try my razor and shaving cream. We'll see how confident I'm feeling at that point. 

I'd like to have a lot of it tamed before my follow up appointment on Thursday with Shonka and team, and then my mask fitting/CT sim. 

Yes, I deleted my last rant against Cigna...After talking to my wife last night, I came to a realization that this is the shit-storm process I have to submit to and have no real choice in the matter. 

It's just the redundancy of paperwork that is so aggravating. I've probably signed the SAME Hipaa form about 5-6 times now......(rolls eyes, sighs, and am moving on..) They want to talk to UVA after EVERY appointment...By all means, have fun calling them for the next 6 weeks, bastards! (LOL!!) 

I'll have my Social Sec disability interview next Tuesday and can't wait to be trapped on the phone for an hour. (insert sarcasm) 

The list of information I have to compile is quite outrageous...Especially considering I won't be out for a full year. As soon as I am ready to go back to work, I'll end up canceling this process for SS disability.

• Need all doctors treating since your date last worked-doctor’s name, addresses, phone number’s, and first, last, and next doctor’s visit.
• If you have been in the hospital since you stopped working, we will need the name, address and phone number of the hospital and the approximate dates you were there.
• A list of all your current prescription medications and the doctors’ name who prescribes each medication.
• Your Work History for the past 15 yrs – Job titles, job duties, approximate dates job titles were held, and current employer’s physical address.
• A copy of your W-2 from last year.
• A copy of a recent check stub from your employer or approximate gross earnings until date last worked.
• The approximate amount of Short Term Disability/Long Term Disability that you have received.

• If you received any sick pay, vacation pay, bonuses or commissions after the date you stopped working, we will need to know the approximate gross amount of money paid to you.
• If you are currently married we will need your spouse’s name, date of birth, social security number & date of marriage.  If a previous marriage ended in divorce and lasted less than 10 years, we will not need this information.   If you were married over 10 years and it ended in divorce, please provide your ex-spouse’s name and approximate dates of marriage & divorce and date of birth or approximate age.
• If your spouse is 62 years or older and receiving retirement benefits, we will need their monthly benefit amount. If your spouse is currently working, we will need their annual earnings.
• If you have any children under the age of 19 and still in high school, we will need the child’s complete name and date of birth.
• Do you have any dependents that were disabled before the age of 21? If so, you will need the dependent’s full name, DOB, and SSN.
• If you have ever received Worker’s Compensation benefits, we will need to know the approximate amount paid and approximate dates when benefits were paid.
• If you have received any other type of public benefit since you stopped working (state disability, public assistance, unemployment, etc.) we will need to know the approximate amount that you received and the approximate time frame you received that benefit.
• If you have ever served in the military we will need the start and ending dates.
• If you are receiving VA benefits, we will need the monthly amount.
• If you were not born in the U. S., please have your citizenship papers/naturalization papers in front of you for the interview.
• Have you filed for Medicare?
• Please have Checking/Routing number for Direct Deposit

I can't wait to get started with treatment, I am still in some nerve pain, but it's more manageable with the meds I'm on.  The PT is helping me too, I can tell. 

woo!!

Swinging at a curve ball..

Sometimes life throws us curve balls, and I just had one pitched to me.

I just received 3 appointment notices in the mail today for 8:15, 8:40, and 9:15 for September 11th, on different floors in the Cancer clinic where I'll be receiving Chemo and Radiation treatments.


I phoned the RN in the Rad dept who is assigned to me to find out what was going on. Her name is Mary and she is a real sweetheart who cares about her patients. 

Because of the labor day holiday falling on a weekend this year, I won't get to begin my radiation/chemo treatment until the 11th. 

Mary told me they want to make sure I am 100% healed, because if I am not, the chemo and rad will really slow that process down and it won't be good for me. 

Sheila tried to warn me this might happen, but I just figured with Tues-Fri still in that work week, we'd have time to get the show on the road, as the saying goes...

I have to honestly admit, it all caught me off guard and I did breakdown.  : ( 

Mary told me it would be ok, and soon it would be over and I would be able to forget all of them, forever.

I told her through tears that I never wanted to forget any of them, because they've taken such amazing care of me.  

(Especially not judging me for my appreciation and collection of tattoos. I can't harp on that enough. They really do love you unconditionally at UVA health, whereas others have taken one look and out come the gavels of judgement!!)   

I thanked Mary, got off the phone, grabbed my Yoga blocks, and did my breathing technique to calm myself. 

It really helped. Within 2-3 minutes, I felt a lot better about things.  : ) 

God bless!

An amazing family.

I received a wonderful gift yesterday, and these cards made with love came with it. I am so lucky to have such an awesome family.  :) 

I head back to UVA next week for my follow up appts, CT scan and mask fitting.  I'll have more to share then. 

God bless! 

 T