Parotid RT

This is what 6 Weeks of Radiation Treatments look like.


This was the plan. Seems to match my burn.

It's over and I'm feeling good. A little burned, no taste, some hair loss behind my ear, and my ear feels a little plugged. When I started the treatments I had no movment of the muscles on the surgery side. During the 6 weeks of treatments, my smile (grin) returned and I can now blink. So it seems the radiation treatments do not impact the recovery of the facial nerve.

My treatments were done at the MU of SC in Charleston, SC. Actually, the Hollings Cancer Center there. The radiation oncologist was Dr. Jennifer Harper. My Surgeon was Dr.Terry Day. I can't say enough about the people there.


Here is my final weight. I lost 3 pounds in 6 weeks.

To read my full blog, you need to use the "Next" button on the left side of the page.


Dwight

I can't believe I'm going to drive all the way to Charleston, after 72hrs off, for my last treatment. But I am.

I've been working on the computer all weekend. Feeling fine. In terms of side effects, I would rate them as follows:

#1 Lost Taste. I've only lost 3 lbs since starting treatments, but eating is terribe. Blah!
#2 Stuffed ear. It's also draining fluid but seems to be getting better.
#3 Radiation burn. It doesn't bother me at all. Just looks like a bad sunburn or bruise.

Like I mentioned before, I seem to have gotten off easy. Looking forward to having it behind me.

Just booked a Las Vegas trip in May. My second son turns 21 along with his cousin. Our extened family is meeting at Ny,NY Casino on the 14th. There is be about 20 of us.

Monday I told the nurse my ear was plugged. While I was on the table being treated she set up an appointment upstairs with a doctor. I went up and gave the receptionist my name. She looked me up on the computer and said "oh, you're in treatment". It was like rolling out a red carpet. They walked me straight into an exam room. The doctor showed up, looked in my ear and told me it was not plugged with wax, but a tube was swollen shut. He told me this is common with head and neck radiation patients and it should clear itself up after the treatments end. It's not painful, I'm simply deaf in that ear. In extreme cases, they will put a tube in.

All in all, these radiation treatments are not as bad as I had anticipated. I had imagined myself struggling to drive home each day and possibly staying over at a hotel some nights. One of the nurses had signed me up for the Hope House my first week. But the fact is, I'm not tired and the radiation actually seems to energize me each day. I couldn't take a nap if I tried.

So I'm getting off easy. The doctor told me my skin would not get any worse. I'm simply a little red, lost a little hair behind my ear, my beard stopped growing, and my taste is gone. I'll post some pictures after my last treatment.

My last treatment is this coming Monday and the doctor has set up a follow up appointment one month from my last treatment. Giddy up.

Finally, I'm starting week 6!!!!

Not much has changed since I wrote a few days ago. Lost 3 pounds this week just because food tastes bad. The radiation burn is a little darker and I now have the dreaded "plugged ear". Will talk to the doctor about it tomorrow. It's not painful yet.

No sores on my skin or in my mouth yet.

I asked the dr. about giving me 2 doses this Friday so I would not have to return on Monday the 23rd for my last treatement. She said no. Darn. Thinking about blowing it off.......

I laid low most of the weekend so I will be ready for the week. I seem to recover pretty quickly over the weekends. Even my skin seems better.

I'm over the hump of week 5 and quite honestly, it's not much different than week 4. Other than the radiation burn being more obvious, I feel the same. Working 7AM to 1PM, driving 150 miles to a 3:15 appointment and then driving home. Eat, watch a DVD movie and go to bed around 9:00.

Eating officially sucks now. I've spent the last few days in search of foods I can taste. There are none. Some foods like fruits, I imagine I can taste, but I think it is simply the smell I'm sensing as I swallow. Because sugar and salt have no scent, I can no longer detect them in any food.

That aside, I have a new fascination with foods. They are all reduced to what they really are. McDonalds french fires are the most disgusting food on earth. Take a sponge, soak it in grease, and that is what I taste when I eat one. Frosting on a cake, it's Crisco! There is no hiding it from me anymore. Remove salt and sugar from fast food and junk food and all that is left is the junk.

I would like to say my diet will be permanently changed when this is all over. Not. Forty nine years of bad habits will be hard to change.

Note to those reading, I'm in no way depressed, moody or otherwise down. Just the opposite. I went into this thinking doom and gloom and I'm happy to report I'm still feeling fine. Mondays are the hardest days for me because I rest over the weekend and then have to transition to the daily grind. But after a shower I'm ready to roll. There also something about the first radiation treatment of the week that seems to rev up my metabolisim. Sounds strange but it hits me like a strong cup of coffee. Also, my face animation continues to improve which is a big boost!

Seeing the light at the end of the tunnel

I went into this with a great deal of dread, hoping I could just make it to week 5 before I hit the wall. Now that I'm approaching week 5, I can clearly see I will make it to week 6. Here is how I break it down:

Energy: Fine. I work from 7:00AM to 1:00PM each day, make the 2 hr drive to Charleston for a 3:15 appointment, and then I'm back home by 6:00PM. Eat dinner. Read or watch a movie and then go to bed at 9:00PM. Up at 6:00Am and repeat. I've been taking it easy over the weekend.

Skin: Starting to show a radiation burn. Mostly just a pink area the size of a softball. A few darker red spots that I assume are due to scatter from my dental work (radiation bouncing off). Today I put a little Aloe on the area.

Ear: I had a hearing test at the end of week 3 because I noticed some signs of hearing loss. Ringing in the ear and I can no longer count the cycles of the RT machine. Doctor says hearing loss only happens in 3% of the cases and should not happen until sometime after the treatments end. The hearing test confirmed some high frequency loss.

Mouth: No soreness at all. A little dry. Saliva is thick.

Taste: Mostly gone now. I can't taste salt at all. So any food that needs salt for good flavor tastes terrible. Cheese, meat, soup....yuk. Fruits, cereal and ice cream are okay but not great.

Weight: I'm still up 1 pound from when I started. I'm glad I gained because I suspect I will now lose weight for the next 3 or 4 weeks.

Muscle Movement: I lost all movement on the surgery side and could not grin, blink, pucker, move my nose or talk well. My lip started coming back last week and is improving quickly. My speech is getting back to normal and my nose is starting to move. I have not seen any improvement in blinking and continue to wear a Blinkeze weight.

I'm looking forward to putting week 5 behind me. Giddy Up!

This is the actual machine I am on.

Still feeling good. I saw the oncologist monday. She looked in my mouth and said "wow no redness". She seemed impressed with her work. So am I.

Geese. I'm sitting in a rest/bar writing this and a nice women came over and hit on me. She was sitting under a tv I was watching and must have thought I was looking at her. I'm flattered but slightly embarassed. I had to explain (with my lip problem) I'm married and my wife still has my ring from surgery day.

I've gained 2 pounds in the first 3 weeks of RT

Today is Sunday and I'm feeling really good. It's nice to have a couple days off from the treatments. I'm going to the mall for a little exercise and a hair cut.

I've been taking movies of my face muscles once a week. When I get significant movement back I will post some of them to show how slow the recovery process can be. It takes a lot of patience. I just started seeing my cheek muscle try to move when I smile.


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This is me staying awake on the drive home 1 day last week

I have not written because there is little happening. I've been in and out of RT each day in record time. Less than 75 cents of parking fee (they charge 75 cents per half hour). I felt tired one day last week but I simply had not slept well the night before. My skin is in good shape.

My taste is a little off now. I tried a glass of red wine and it set my tongue on fire and I had to spit it out. It really surprised me. The next night I thought I would try a rum and coke, same thing. So alcohol is out. A gal brought a chocolate cake into work and all I could taste was coconut. There must have been coconut oil in it. The taste issues seem to come and go.

Other than that, I'm still feeling fine.

Oh, I started to detect some muscle movement on the surgery side now. If I look close, I can see my cheek muscles tighten when I try to smile and I can see my nose start to move when I flare my nostrils. I think it's been 7 weeks since surgery and this is the first movement I've seen.


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75 cents per half hour. Yes, MUSC charges the cancer patients for parking.

I met with the Radiation Oncologist for my weekly review. I didn't have anything special to report. No aches or pains yet and my skin is fine so far. They are setting up a hearing test to baseline my hearing for future reference. The only symptom I can detect so far is dry mouth at night. My taste is a little off but I'm eating like a horse. I read in "Julies Story" that your body burns more calories while trying to repair damage caused by the RT. I don't know if there is anything to that, but I figured I would try to keep up my weight as long as I can. I'm writing from the hospital cafeteria today. I came over for soup and a sandwich after treatment.