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.