They keep coming

I think I'm just about to run out of possible new side effects. For those with a cruel sense of humor, you'll get a kick out of this one. I was told that I could lose my hair in the treatment area. Sure enough, the hair behind my ear is falling out... in small wads. Since it's behind my ear, no biggie. But... the skin flap, my new skin, from my thigh is now growing hair. O--M--G!!! I'm going to count on radiation zapping that hair too. And, no, it's really not noticeable unless you are looking up close & personal.

This morning I escaped a wave of nausea, but it was replaced with very a painful sore on my tongue (way in the back, on the right side at the base). Made swallowing a HUGE challenge. Not good if they want me to continue eating & drinking for the next 4 weeks. Well, I took a couple of Advil and thankfully, that managed the pain enough for me to get down my lunch. Whew! It's several hours later and it's still tolerable. I did take a Tylenol to be on the safe side.

(BTW, if you are reading this, please sign the comments -- I'm just curious.)

Week 3

Today starts Week 3. My first treatment of the week will be in about 20 minutes so I have time for a quick update. I had a great weekend at home with my family. That is, once I ditched my new med which I now know is Compazine. Remember that name, folks, and avoid it like the plague! That stuff was awful. I described it as having the creepy crawlies or heeby jeebies all over. I couldn't sit still. When I read the drug fact sheet, it described the usual side effects and then said that if any of these unusual side effects occur, call your doctor immediately: restlessness/agitation. Bingo! I never took another one. Fortunately I had some phenergan at home that was left over from a recent stomach bug. Phenergan is my new best friend and I had that Rx re-filled! Once that chief complaint was under control, the rest of the weekend was smooth sailing.

I did have a couple of other new side effects pop up this weekend. I now have sores in my mouth -- feels like a burn you get when you eat something too hot. And my taste buds are mostly shot. Things just aren't tasting the same. I'd say it's leaning more toward 'no taste' than 'bad taste' which I'm thinking is a good thing. Maybe now is the time to learn to eat tomatoes. NOT!

Nutrition & Acupuncture

Yesterday I sat down with a nutritionist. I really enjoyed my visit with her. We reviewed what I currently eat and she seemed happy with it. She let me know how many calories and how much fluid I should be consuming daily. She also gave me a few ideas on how to pack in a few extra calories when I don't feel like eating. I never thought there would come a day when I didn't want to eat, but I see it getting close. The nausea is really becoming bothersome so today I'm going to hit it with a double-shot. I got a prescription (can't remember the name, but it's not zofran or phenergan) and I had acupunture. The acupuncturist also sent me home with seeds taped to my ear so that I can press them on some pressure points. It's supposed to help with nausea, dry mouth & some unrelated back pain. I've got one hardcore acupuncturist. I had always heard that it didn't hurt, but this lady wants to make sure you feel something, otherwise, apparently, it's not working/hitting the right spot. My motto is "whatever works!" Now I'm off to CVS to pick up my prescription. Radiation comes later this afternoon. Did I mention my white skin is starting to turn a lovely shade of pink?

7 down

I just finished treatment #7 with #8 coming this afternoon. Yes, I'm doubling up in one day so that I don't have my final treatment on a Monday (which would mean another trip to Houston). So far, the side effects have been mild nausea and as of yesterday, a bit of dry mouth.

This afternoon I have an appointment with the nutritionist. I'll be interested to hear what she has to say. I could have used a nutritionist long before now. Maybe she'll help me set up some good habits for life. Then I would just have to convince my family to go along with it!

Eyes Open

4 down, 26 to go.

I'm a dork. I mentioned the bright light from my first treatment. Well, today, I kept my eyes open for the first few minutes. The "bright light" was just the overhead lights. The machine is directly above my head when I lay down. When things get rolling (after I close my eyes), the machine moves to the side and the overhead lights are shining down on me. Then the machine moves some more and blocks the light. Oh well, I can still pretend I'm at the beach!

So, I finished my first week. Not too bad. The only side effect (which could be completely unrelated) is mild nausea. I need to get started on the flouride treatments and baking soda rinse. I'm doing the mouth exercises although I found out yesterday that the jaw & neck exercises are really for AFTER treatments stop because that's when the scar tissue will start to build up. The doctor said it was a good idea to get started before the treatments end... I think to get in the habit.

I'm going to attempt to add photos this time. Here are a couple of pics of the almighty machine.

Now for the mask that has been molded to fit my face. This holds me in place so that I'm receiving radiation in the exact same place each time.

Lastly, me in the mask. Kinda looks like a horror film. Long lost cousin of Jason?! Yes, I can breathe, no I cannot move from the shoulders up!

1 down, 29 to go

I thought my first treatment was going to be Monday, but that turned out to be a "dry run." I was strapped down and put in the proper position, but then they just took an x-ray. The doctor wants to see if everything is just right before shooting those first beams. Guess it was all in order because my first official treatment was Tuesday. I went in, got my towel to cover up with, laid on the table, was handed my stent (it stays there for safe keeping), popped that sucker in and closed my eyes. They tape the bolus to my head and put the mold over my head and attach it to the table. The machine moved around a few times and zapped me in different places. I counted 6 (maybe 7) long beeps. That'll help me count down each treatment. There was also a bright light at one point so I imagined myself on the beach (whatever works)! When the light moved and it wasn't so bright I just thought the sun moved behind a cloud. ;-) I was in and out of there in 30 minutes. The lady I've seen in the waiting room the past 2 days has 8 more treatments. Her neck was really red, looked like a very bad sunburn. I didn't notice any blisters though.

Lastly, I want to send out a couple of shout-outs. First to S&K for the wonderful accomodations. WOW! Thank you so much for your generosity. Secondly, to my fab sis and her family. Thanks for everything!

Radiation class

Sometimes you just have to laugh. Radiation is just a concentrated x-ray, right? We've all had x-rays, rights? No biggie. Not exactly!

My posts are never that organized so this will be no different. Try to keep up!
Good news: Valet parking is free during radiation treatments, I am required to see the doctor every week so that I can ask any questions and review any/all side effects and how to manage them. I can also "drop-in" anytime if I'm having issues. That's about all I can come up with on the good news side... other than the "it could be worse" point of view.
I should be fine the first 2 weeks and then the side effects start kicking in around week 3 and get progressively worse throughout the remaining treatments.
Side effects:
The skin in the treatment area may become red and itchy and may blister/peel (similar to a bad sunburn).
I'll feel tired (naps are nothing new to me).
Could get a sore throat making it difficult to swallow, therefore, difficult to eat & drink. Those are 2 VERY important things. If I start to lose weight, they'll put in a feeding tube. No thanks!
Change of taste, nausea & loss of appetite.
Hair loss in the treatment area. (My hair was already shaved a little bit behind my ear so I'm not going to worry about that one.)
Mouth sores.
Saliva changes (as in thick & sticky). The nurse said I would want to spit it out constantly, including in the middle of the night. He recommended sleeping sitting up about 45 degrees so I don't gag on it. (I think this is where I start to laugh. Really????)
If the mouth sores, sore throat or anything else cause too much pain, they'll put me on pain meds. If that happens, then we add a new side effect of constipation. I'm scheduled for a "Bowel Management Class." Really???? Laughing again.

There's also a list of things to avoid. Not that I'm a big drinker, but I'm really bummed that I can't have alcohol during the next 6 weeks. (We want what we can't have!) Also, no carbonated beverages, citrus juice, sharp-edged foods (chips, pretzels), or highly seasoned/spicy foods.

There are things I'm supposed to do to treat the side effects: (They actually gave me a checklist). These are all supposed to start on day 1.
Aquaphor ointment for skin burn - 3-4x daily
Baking soda mouth rinse - 4-6x daily (continue for 6 months after treatments stop)
Fluoride - 1x daily (continue forever)
Jaw, Neck & Throat exercises (6 exercises) - at least 3x daily (however, my plastic surgeon has not cleared me yet for neck exercises because I need more time for the surgical site to heal.) (Also continue these for several months after treatments)
Brush with Biotene or Sensodyne toothpaste.

That pretty much covers what we discussed in class. I then went to an exam room to wait on the team of doctors. They all came in -- about 6 people. One of the other doctors looked at my neck and they all left. Apparently they went somewhere else to review films and my proposed treatment plan and they all agreed. I got my radiation schedule, signed the consent form and left. My schedule is fine with me except for Fridays. All my appointments are late afternoon/evening. I need early appointments on Friday so I can hit the road and see my family! When I start on Monday, I'll see what I can do to change that.

(Side note: When I got home -- actually not even home, just stopped to pick up the kids -- I got a call from MDA that they had me scheduled for a hearing test on March 11. That would be today. I said "I don't think so!" I'm going to be there for the next 6 weeks! How 'bout they pick any day next week??? Well, I'm now scheduled for April 9. Argh.)

Simulation

I started off the day in the Dental Services area where I picked up the stent. I waited 1 hour to visit with the dentist for about 5 minutes. I popped in the wax mold to make sure it fit and off I went. It's a mouthful!

Next stop was the Radiation Treatment Center. We had a visit with Dr. Garden & Dr. Rineer (fellow). I was given a packet of information to read before class tomorrow about all the joys of radiation. Something came up and the drs left us waiting in the exam room. Finally we were called to the simulation area. This is where all the fun started. The radiation tech & student did a pretty good job of explaining the process. First, I put on a gown (just undressed from the waist up) and laid on the table. Dr. Rineer taped some kind of wire along the scars. He then outlined the surgical area on a "bolus" (looked like a sheet of gummy wax). That was cut out and taped to my head (yes, that had to be taped into my hair). Once I was flat on the table again, they strapped my hands down. The purpose of that was to pull my shoulders down. It didn't hurt; was mildly uncomfortable. Then, I needed to be lined up with the CT just so. They moved me around a few times to get situated exactly. They left the room to check the scan and came back and moved me some more. Now the fun started. The stent went into my mouth. They brought over the mesh for the cast of my face. It was warm and wet and covered me from the top of my head down to my shoulders. It was tied down and was molded to my face. As I said, it was mesh so I was able to breathe. I eventually realized it would be best to close my eyes. They put a cold towel on the mesh to help it set faster. Stent is still in my mouth. Then they brought out the magic markers and starting drawing on my face. And they drew a line down the middle of my chest and a line on each side under my arms. Those will be there throughout the treatments. Don't wash them off! If they start to fade, they'll re-draw them. They were in and out a couple of times. Since my eyes were closed I kind of "went somewhere else." They finally took the final CT scan. I was released! The tape was ripped out of my hair and I spit out the stent. All said & done it was 45 minutes. Back tomorrow.

Dental "impressions"

I'll start with a general update on the healing process. The swelling is going down, but it is still swollen. Or, it could be a combination of swelling and excess tissue that should shrink during radiation. I am sleeping flat now which makes a big difference in quality of sleep. Yesterday I found a lone stitch behind my ear. Tried to pull it out, but it seems to have found a permanent home. Same thing with a stitch in my leg. It REALLY bugs me. Just one of those things. I was treating my eye (because of the apparent lack of blinking) with "tear" drops and ointment. I haven't used the ointment the past couple of nights because it is affecting my vision and I use the drops ocassionally during the day. My eye really bothered me on the way home from Houston Thursday. Felt tired. Back to the leg... feeling much better and improving range of motion. Right after surgery I couldn't bend at the knee all the way. Now I can. The random shooting pain on the side of my leg has subsided considerably. As advised, I do try to remember to keep it wrapped if I'm going to be out & about for any length of time.

Now for the update on Thursday. I typically try to post quicker after my appointments so I can remember more, but the doctor I met sat with me for 45 minutes and gave me so much information that I wasn't going to remember it all anyway. Here's what I do remember.

Dr. Mark Chambers:
The purpose of this visit was to get impressions made for a stent that I will have in my mouth during radiation. I saw a sample of the final product. It looks like half of a mouthpiece with a big solid piece of plastic that connects the front to the back. That will force my tongue to the other side of my mouth and protect it from the radiation. It will also hold my mouth in the exact same position for each treatment. As I mentioned the doctor was with me for about 45 minutes and the topics of conversation were all over the map. I'll recap what I remember in no particular order.
*He asked me for a re-cap of my parotid history. I told him that my 2 previous surgeries were done at Methodist. He wanted to know why I didn't come straight to MD Anderson the first time. (I thought the question bordered on cocky.) I explained that I was in College Station and that I didn't have much confidence in my doctor there. My sister helped me find another doctor (long story) and that's how I ended up with Dr. A. Besides, as far as I knew, MD Anderson CANCER Center was for Cancer patients. I only ended up at MDA because Dr. A referred me there. He seemed satisfied with that answer.
*He corrected my terminology. I said I found "nodules" in my neck and he explained that they were actually "nodes" and what the difference was. He said I needed to be clear in that. (NOTE: I went back to the operative report from Dr. Weber. He removed "nodules" from my neck. WHATEVER!!)
*Side effects of radiation will include a burn to the skin especially since I'm so fair. Also, mucositis (mouth sores). Both, he said, could be treated. I think he said my taste buds would be effected too, but it was temporary.
*We discussed my possible hearing loss and he was going to order another hearing test. Still feels a bit stuffy - like a head cold on one side.
*He asked what I did for a living and I said "self-employed." I would have explained further, but he moved on. Later, he asked if my business was in accounting. I had to shake my head "no" since I had a mouthful of goo for the impressions. By the time he took it out, again, we had moved on. Next time...
*Speaking of next time, I go back on Monday to pick up the wax mold of the stent. I'll use it for the simulation later that morning. They'll take it back and make a permanent one of hard plastic.