We were told that it is better to not know where the primary tumor is, because that would mean that the primary tumor hasn't grown enough to be real resistant to radiation - thereby giving the radiation a better chance of killing the primary site cells. However, I must admit that I felt better knowing that the primary site was found. And removed. And to be followed up with the radiation to kill any errant cells that may be still present.

Prior to beginning my radiation treatments, I arranged to have a dental checkup. This is strongly recommended in radiation treatments to the oral cavity. The radiation is very hard on your teeth and gums. There is a pretty nasty word called xerostomia that sums up what happens when you get radiation to your mouth area. (Here is more recent info, covering xerostomia and use of Ethyol). After reading about it, I felt compelled to do everything I can to try and preserve my teeth, and practice good oral hygiene! I had panorama x-rays done. Cleaning. Two teeth had cracked fillings - got those taken care of. It seems that radiation treatments accelerate tooth decay, so even the smallest crack or cavity could end up being real problematic down the road. I'd recommend giving this some attention early, to prevent problems. I also got a prescription for some special fluoride toothpaste called Prevident 5000 Plus (Colgate).

I'll provide my radiation experience in an outline form to give an idea of how things went from week to week. Before I get into that though, I should mention that radiation treatments do have side effects. Believe me! I documented how I felt as the weeks rolled by, but everyone experiences it differently. There are certain things that will definitely happen, however. Some of these include:

• Skin Burning - My skin burned, but not as bad as some other people that I've talked to. There are things that can be done to help cope with it, but for the most part, you just have to endure it! One product that I found that really helped was called TheraCare. It was recommended by one of the women in the AOL radiotherapy message board area. Unfortunately, I didn't get it until I was into my 5th week - but it helped once I did start using it. I used to have a link to their web site, but it has either closed or moved. I listed their address and phone number on the links page if you are interested.
• Sore Mouth - The burns don't just happen on the outside skin. The inside of your mouth/throat get burned also. The things that helped most for me were Miles Solution, UlcerEase, and Lidocaine 2% viscous. In my late 7th week and 8th week, I had a pretty sore ulcer on my inside left cheek.
• Dry Mouth - This is really aggravating. Your ability to produce "normal" saliva goes away, leaving you with real thick spit that doesn't contain much water. This is what the xerostomia is all about.
• Loss of Taste - This varies from individual to individual, but I lost almost all my sense of taste. There is actually a medical term for impaired taste - its called "hypogeusia."  This was one of the most aggravating side effects of all! Almost at the end of my treatments, I picked up on zinc as a supplement to help aid in regaining taste.
• Fatigue - You will get tired. I really didn't start feeling it until about the 4-5th week. But when it hits, you'll know it. Just listen to your body, and take it easy!
• Hair Loss - If you are a man and have a beard, the radiation will probably cause you lose facial hair in the area being radiated. I lost mine at the end of the 3rd week.

Before starting my treatments Dr. Gleich, Dr. Redmond and I agreed that we would meet somewhere around the 5th week to reassess the efficacy of the radiation treatments. This would be necessary in order to determine whether or not further surgery (i.e., neck dissection) would be necessary. The hope is that the radiation will do the trick, and shrink the tumor away to nothing.

My original radiation treatment was to consist of 5-6 weeks of radiation. Since I was not getting the radical neck dissection prior to radiation treatment, the course of treatment was increased to 7 weeks. I wanted to know about the equipment, what type of radiation, what the actual dosage would be . . . and on and on. I was full of questions, to the point that I'm sure they hated seeing me coming with my little steno pad and pen!

Before the actual treatments could begin, I had to undergo what is called a simulation. The simulator is a diagnostic tool that has a fluorscope attached that allows better imaging for setting the targets for the linear accelerator used in the actual treatments. I'll get into that in a minute. But before the simulation could be done, I had to be fitted with a mask. This was an interesting procedure, with a good idea behind it. They lay you down on a bench and create a plaster mold of your head (this is probably bad if you're claustrophobic). Your head is covered with the warm plaster, leaving only nose holes and a mouth hole (~ 2" dia.). You get to breath out of a plastic tube. This tube goes with you until the final treatment, and you may be able to save the tip of your tongue by extending it (your tongue) as far into the tube as possible during the irradiation.

Once the plaster mold is made, a clear plastic mask replica of your head is created from the mold. This mask is what will be used to bolt your head into place so you cannot move it during the "rad treats." The mask is also what allows the alignment marks to NOT be made on your skin (although you will still probably have to have a few marks drawn on you for field alignment purposes). The majority of marks are made on the mask, which helps to keep everything consistent and keeps you from looking like a jigsaw puzzle.

The simulation is the process of getting the alignments made, and marks made so that when you get the real treatments, they will be to the exact same spots - every time! You lay down and are bolted in with your mask. X-rays are taken to assess the exact position necessary for the x-ray blocks to be located. The "blocks" are molded pieces of metal alloy, that will prevent radiation from affecting areas not needing treatment. Also, the fields that will be radiated are defined. In my case, I was to get a dose of 90 cGy (centigrays, or RADS) to both the left and right upper neck and cheek areas (for a total dose of 180 cGy/day). And a lower field of 180 cGy/day to the front clavicle and lower neck area. I had a block on the lower field that left me with a (temporary) white stripe up the center of my throat (this protected my spine and esophogus). The blocks I had on the left and right sides created a definite curved line (from the radiation burning) on my skin, that came forward from the middle of my ear to my cheekbone, and curved down to my jaw. This will all make more sense if you view the photos on the photos page.

The simulation lasted about 45 minutes. And that is a long time to be in that mask, believe me!! The normal treatments only take a few minutes. Physically, this was the most uncomfortable part of getting the treatments (notice I didn't say anything about the side effects of the treatments!).

Once everything has been aligned, blocks made, and everyone is happy, you can start with the real thing . . .

Week One

• Well, that "tickertape" has been running like crazy. The first thing that really hit me was when I pulled into the parking lot for the radiation onclogy patients. Each parking space has a little sign that says "Reserved Parking - Radiation Oncology Patients - Permit Required." When I saw that for the first time, it really hit me. I have cancer. The only people that come here and park here have cancer.

• The first treatment went smoothly. I had already been in the mask during the simulation, so I had already experienced that part of it. There is no pain during the treatment, but I got a distinct sensation of "something" passing through my body. Rae, my radiation tech., seemed to think I shouldn't "feel" anything. It was more of a sensation . . .

• My dosage for treatments was to be 180 cGy per day up 4140 for the left and right neck areas, and up to 5140 for the front. This is subject to change as you get more into the treats. These treatments are with photon x-rays, which penetrate through your body. Later in the course, the photons will be reduced, and electrons will make up the difference. Electrons don't penetrate as far, thereby doing less tissue damage.

• I also felt slight hypersensitivity of the skin being irradiated, as well as sore jaw joints from the breathing tube (which actually keeps your jaw open to the same degree from treatment to treatment). Rae said some people also experience soreness from glandular irritation.

• Started on Salagen for saliva production.

• Started Essiac tea.

• By weeks end, dry mouth had begun to set in.

Week Two

• Finished up my business at the dentist this week (Mon.), which didn't do much to alleviate my soreness from the jaw joints!

• Taste sensation starting to go . . .

• Towards the end of the week, starting to feel some pain in my throat, rawness and trouble swallowing.

• Tumor is starting to flatten out a little bit - not much.

• Was placed in a "group" at the Wellness Community. Meetings are on Tues. eve. 6:30p - 8:30p.

• Took my mom and wife, Kathy, in to meet the Rad. Dept. staff and see what's involved in getting my treatments. This way they can see "first hand" what I'm going through.

• By week's end, I was beginning to feel pretty bad inside my throat. The rad-onc doc said it's common to see fungal growth set in. I noticed some white "rough patches" on my inner gums by my back molars/wisdom teeth.

• EMOTIONS: By now I am wondering how I'll feel after 5 more weeks of this (!), if I feel this way now. It's grim to contemplate.

Week Three

• Celebrated my 44th birthday over the weekend. Both daughters (from out of town) were home to visit. It was great, but I couldn't taste my annual chocolate marble cheescake, or the wonderful Italian food Crystal (my oldest, and a cook) fixed for me. Many cards and much love. What a great family . . .

• On Monday, I got a prescription for the Miles Solution. This is comprised of 1 gm tetracycline, Nystatin Suspension (2,000,000u), Hydrocortisone (20mg) and Benadryl Elixir. And it does work, thank God! There was a definite "line of demarcation" where the radiation was burning from the roof of my mouth, on down. Ouch!

• Tumor is now noticeably shrinking.

• It was a yeast infection that was setting in causing all the pain in my throat. It was much better by mid-week.

• Getting tired by about 9:00pm now. Feeling some mild nausea every once in a while. (This may have been due to the Miles Solution. The Dr. suggested "swishing and spitting out," instead of swallowing. After trying this, I didn't notice the nausea anymore . . .)

• Loss of taste is the foremost aggravation by week's end. Mouth is dryer due in part to the antihistamine in the Miles Sol'n. Dr. Redmond says things are looking OK. Tumor continues to "flatten."

• Had to shave on Friday. Beard started falling out. After 25 years, it really seems like a stranger staring back at me in the mirror . . . Still have a goatee, though.

Week Four

• The loss of taste is really annoying. I worked up a fantastic image of loaded potato skins in my mind. While out shopping, we stopped at T.G.I.Friday's and I ordered some. They came out looking absolutely mouth watering (or at least as mouth watering as can be with no saliva!). Sour cream, cheese, bacon, butter, ummmmm. I took a bite, and . . . yes . . . it was like eating a napkin. No taste whatsoever! I almost cried right there in the restaurant. This is terrible, and no one will ever know unless they go through it themselves! Amazing how much we take our senses for granted, when there are no problems.

• Went to my first Wellness Community meeting on Tuesday night. Ages ranged from 30's to 60's. Great people. Tragic stories. After hearing some of the things others have gone through, I don't feel so bad. In fact, I feel like a whiner. God has been good to me, so far.

• Very tired in the evenings. Passed the half way mark this week. Hey, it's a big deal . . .

• Skin under my neck is getting very dry and turning white in some areas. And brown in other areas (like a peeling sunburn). I have been using aloe vera a couple of times a day, with relief, up until now. It's not helping much with the heat from my skin quickly drying it out . . .

• EMOTIONS: I have had some strange dreams lately. Also, have had some low days when I've felt like I was being pulled into a "large dark hole." I felt that if I ever went in, it would be real hard to get back out. Trying to stay upbeat.

Week Five

• Started taking the MSM (check my link resources page) this week. Using 4000mg/day.

• Going in to work a little later these days. Fatigue is really setting in now.

• Started using UlcerEase (phenol) to deal with the raw throat, that is getting worse. Burns bad when I gargle with it, but provides numbing relief shortly.

• Skin is getting really red now. Dryness is getting worse, despite using several different lotions and creams 3x a day. Found out about TheraCare from a woman in the radiotherapy group on AOL. Trying to find a local store that sells it!

• Skin on my neck is peeling - looks like a bad sunburn underneath. All brown and pink. The burning should diminish 2-4 weeks after the last treatment. The radiation continues to do it's work for ~2 weeks after the last treatment.

• Met with Dr. Gleich on Wed. As usual, he was brief, and to-the-point. The tumor has shrunk significantly. But not enough. Time to schedule the neck dissection - again. Sigh. I asked a few questions that we discussed 6 weeks ago, and got the same answers. Basically, I was hoping that the radiation would do it! I certainly don't feel like finishing out these radiation treatments, and then having surgery!

• The good news is that the radiation to my upper chest will be reduced, and thereby the side effects will be reduced. Radiation will continue to the tonsil site in a more focused (smaller) field. The tumor will continue to shrink, possibly even dissapearing. Healing of the surgery may be complicated by the effects of the radiation already received. This surgery will greatly increase my likelihood of success at beating this thing. Intellectually, I realize this. But I don't have to like it!

• Talked with Dr. Redmond about the changes to my radiation prescription. The total dosage will be dropped from 7000 cGy, to 5140 cGy for all areas except the tonsil (about a 3-4" square area on my left cheek). This means one more week of the current regimen. Then a 10 day "boost" treatment of 200 cGy/day to the left tonsil, for a total of 7040 cGy to that area. The boost will be 100 cGy/day photons, and 100cGy/day electrons.

• Started the electrons on Thursday (you can see the different attachments to the linear accelerator in the photo gallery). These are in addition to the photons - and take a little extra time to administer. Electrons don't penetrate as far as the photons do. Their energy can be adjusted to penetrate to different depths. This was done in conjunction with going "off chord." Which means a new spinal block was put into place for the neck treatments to protect my spinal chord from the photons.

• Skin is very burnt. Anything touching it (i.e., shirt collar. etc.) is irritating.

• Neck dissection is scheduled for 11/14. Dum da dum dum.

• Found some TheraCare! One store in Cinti. had it. $8.75 a jar (for 1.3oz). But it goes a long way. That little jar lasted me the rest of the treatments.

• EMOTIONS: This week was very emotionally draining with the news of the surgery. This news felt very heavy for some reason. Oppressive. Exhausting. It just seems like it's one thing after another . . .

Week Six

• Throat is getting more raw feeling inside. Seems to be a painful "catch" deep inside, around my Adam's apple. Neck and throat skin continue to peel. TheraCare helps - it keeps the skin coated and moisturized, and doesn't dry up. It's a purified form of lanolin, and kind of like a salve - sort of waxy. It's messy, but at this point, I don't care!

• Decided to go on short term disability from work. Things are getting difficult to manage. Skin irritation, fatigue, throat problems, etc. Work was actually a nice distraction from the cancer for a while, but now I don't feel like I'm doing anyone any good there . . .

• Did my second simulation this week. This one was needed to make the new blocks for the photons and electrons for the last 10 day boost treatments.

• Continue to go to Tues. night WC meetings. They help. I recommend this.

• Miles Solution doesn't help anymore. Started using a 2% lidocaine viscous solution to numb my throat. This stuff is thick and nasty. But, it does numb things! I tried diluting it about 60/40 in water. This helped a lot. Still using the UlcerEase too.

• Wed. was the last day of full field radiation. Yeah. Now maybe things will have a chance to heal up a little before the surgery.

• Started the "boost" treatments on Friday. Unfortunately, this increased the number of treatments from 35 to 38.

• Throat (inside) is very uncomfortable. Hurts to swallow any food. I'm chugging those ScandiShakes though (about 600 calories ea.). Skin is still peeling. Bright pink underneath. Dr. Gleich says that this skin will ultimately have a "woody" texture.

Week Seven

• Throat is now the main complaint. Started coughing up streaks of blood in the thick phlegm that gets stuck in my throat. Yuck. Coughing is the only way to clear that out. And it hurts to cough.

• Sometimes gagging results from trying to clear my throat. That creates a short panicy feeling . . . It's like you clear part of the mucous out, but the rest of it obstructs your airway.

• Began taking a tsp of roxicet (left over from my tonsillectomy) along with the numbing agents at bedtime. This provides a couple of hours of relative peaceful relief. If it would only last . . .

• This week I started work in earnest on this web project. It takes my mind off of things. Good therapy. But a lot of typing.

• The TheraCare is really doing a nice job with the outer throat and neck skin. I'm glad I found out about it. Mostly just trying to hang in there, and tough it out.

• By week's end, developing painful sores (ulcers) inside my mouth - on the left side where the majority of the radiation is still being concentrated. Very hard to even get that plastic breathing tube in my mouth now days.

• Ended the week on a high note. Crystal came up to spend the night Fri. And starting to feel better in general. All but the sore throat . . .

Week Eight

• Never thought it would get here!!

• Did pre-op testing on Mon. Got to be at the hospital for pre-admission at 5:45am on Friday. Early! Feeling a bit more energetic.

• Not much blood from my throat now. That's encouraging. It's been a week now since stopping the radiation to the neck and throat . . .

• Took Leah (my 6 yr. old) to rad-land on Tues. They let her pick out a stuffed animal. She chose a black and green owl. "Wise" choice. Leah got to meet all the great people, and see the machine that I get my "medicine" on. And, of course, the mask . . .

• Wednesday. November 12, 1997. My last treatment!!!!!!

  At last! - Finished.

Most people won't go more than 7040 cGy. I think that this is a limit for treatment. I'll tell you one thing, 38 treatments is more than enough to last me!