Radiation Update - Parotid Tumor Journal

Thank you to those who've expressed their concern about my situation. I feel fortunate in that my condition is not cancer, and I will not require chemotherapy, and that I live in an area where there is easy access to cutting edge modern medical treatment. For those who may have stumbled onto this site while looking for information about parotid tumors, you cannot do better than to look at the superb Patients' Forum on Parotid Tumors run by RoxanneM at this link.

Unfortunately, I am not yet done with treatment. I've been through five weeks of electron RT and am now embarking on about three weeks of photon treatment. During these past weeks I have been posting a journal of my experiences on the Patients' Forum, going by the screen name CarlaFW. I've reproduced the journal in its entirety, unedited and complete with minor errors, below. The biggest error is that I am not in IMRT radiation therapy, but straight-up photon treatment. The later entries tend to be more accurate than the early ones due to the information I've gathered during this period. Maybe by the end of this little episode I'll actually know what's going on. In the meantime, I would like to extend thanks to the Radiation Oncology staff of the Virginia Hospital Center. They are the best.

Starting Radiation Treatment Next Week

Posted By: CarlaFW
Date: Thursday, 2 August 2007, at 10:27 p.m.

Well, I've gone and done it. After dillydallying, ducking, and diverting myself for the last few months since my April surgery I've finally started preps for radiation treatments. After five recurrences during the last 34 years it's clear something a little more drastic than waiting for the next pleomorphic adenoma to grow in is called for, so I'm ready to roll.

I've been to see the radiation oncologist twice this week. He's very comfortable to be around and his office is efficient yet lowkey. On Tuesday I showed up to have my mask made. This is the thing which will be placed on my face to keep me immobile during the treatments over the next few weeks. I'm curious about others' experiences of this rather bizarre process. I'm not claustrophobic, but having a large, warm, rectangular, meshy, waxy thing placed over my face like Saran wrap and strapped to a table was a bit unnerving, especially when it began to stiffen. However, the reality is it wasn't too bad. You can actually see and breathe through the thing. There was a lot of marking of things with green magic marker, bits of masking tape being torn off and slapped onto it, and various terms being tossed about. Hard to follow for this math-phobe, but they answered all my questions to my satisfaction.

Today I went back for a bit of tinkering. This time my doctor greeted me with flat piece of pink wax upon which had been crudely drawn an ear outline. He snipped and worked it and kept fitting it over my ear. Once he felt it was sized right he picked up a lead disk, traced an outline of the wax onto it, and more snipping and shaping ensued. Come Monday I'm assured this thing will have a wax coating. It's to protect my ear and ear canal from the radiation. After that I had to lie on a table for about 15 minutes while more measurements were taken, and then two tiny tattoo dots were put on my temple and front of my ear. They're hardly noticeable.

I'm told treatment will be mostly with electrons, calculated to appropriate depths at a strength of 9 million volts(!?). Electron treatment is supposed to be far less destructive than photon treatment since electrons are particles and photons are rays. It's possible that due to some earlier involvement of my lymph nodes in my fourth surgery that I may have to have photon radiation on the nodes, but we'll cross that bridge when we get to it. Right now it looks like we're just doing the electrons. My doctor wants to review my ancient file and make a final determination. He told me that my record makes me a little bit of a medical anomaly and he and my surgeon are planning to present my case to some meeting next week. Sounds like fun.

My friends' crazy senses of humor are a help. Some of them are planning to get my mask after we finish the treatments, cast some molds, and create "cargoyles" for various places like their gardens and maybe my office. The kitschier/tackier, the better. We wouldn't want to leave me with any shreds of dignity, would we? Maybe we'll fashion a "twin" for me for the high occupancy vehicle lanes.

Anyway, Monday's the big day. We'll see how things go.

First Week of Radiation In the Books

Posted By: CarlaFW
Date: Friday, 10 August 2007, at 10:38 a.m.

Well, I've finished the first week of radiation. It's 9 million volts of electrons every morning at 8 a.m. It's just a regular appointment I keep every morning, after which I proceed to work or sometimes home if I feel like a little nap. So far, so good.

As to side effects, yesterday I got the shock of my life when I accepted a spoonful of Italian ice. The right side of my mouth felt like I'd just broken a tooth and slapped ice on top of it. Ouch! My tongue feels slightly larger. The left side of my head, which is the treatment side, has been stiffening up lately. Yesterday my jaw felt very stiff on the left and I found myself working it and stretching it like the Tin Man after a rain. Last night I couldn't sleep due to the ache in my shoulder radiating down from my neck. But aside from this irritating tightness I haven't got much to complain about. I feel more tired than usual, but have been able to work. There is a sense of ditziness that hits right after the treatment - where I have trouble finding words and completing thoughts - but that sensation burns off after a little while, and part of that may be related to menopause. Or maybe I'm just ditzy and never noticed it before. Who knows?

Last night I did a little research and found some reference to hearing loss related to electron radiation, so am planning to ask the doctor about that on Monday. My last tumor was so large I had impaired hearing, but after the surgery my hearing improved. I'd hate to lose it again, but sometimes you can't make an omelet without breaking a few eggs. More on this later.

Anyway, now I have two days before I have to go back again, a welcome respite, and then back into action on Monday. It helps enormously to have such a friendly, helpful, responsive staff. I've seen pictures of their children and favorite pets, heard anecdotes of family adventures, and gossiped about hair care and favorite foods. They're downright neighborly.

Second Week of Radiation Complete!

Posted By: CarlaFW
Date: Friday, 17 August 2007, at 9:32 p.m.

Another week has passed and another week of radiation is done. There's more fatigue, but that may be related to the fact that my teens don't seem to understand that I need a lot more uninterrupted sleep these days. They're used to their insomniac night owl mother prowling the house at all hours and so think nothing of starting conversations or calling me from their friends' houses at 1:30 a.m. Today, my business partner finally called my daughter and asked her to read the riot act to her brothers since I'm walking around with bags under my eyes large enough to shutter a window.

With the exception of a small computer problem which caused my treatment to be postponed until Thursday afternoon there have been no problems. As for side effects I've noticed a stiffness in my jaw and next to my ear, and a mildly bruised feeling on the side of my head. I have started to see a diminution of my sense of taste, especially along the left side of my mouth, and my teeth and gums are increasingly sensitive. This problem I am treating aggressively with high fluoride prescription toothpaste and Sensodyne after every snack or meal during the day. The sense of scattered thinking remains, although maybe that's the fatigue more than anything else. I continue to pause to grope for words, probably to the relief of colleagues who needed a break from my constant prattling.

Looking forward to my little weekend break.

Third Week of Radiation Done

Posted By: CarlaFW
Date: Saturday, 25 August 2007, at 8:04 a.m.

After three weeks of radiation I have to say that electron's definitely the way to go.

This week the doctor increased the thickness, by one centimeter, of the bolus, the gel-filled thing resembling a mousepad which they place over my ear after taping the ear shield to my head and hair. The idea was to get closer to the surface of my skin, and I noticed an immediate increase in the sensation of a sunburn within a day or two. I was surprised at how much heavier the bolus felt with the added thickness. Like lead. I also asked why, after counting off the seconds during each treatment, there is as much as five seconds variation in treatments. The technologist told me that she measures the barometric pressure, humidity, and temperature of the room every day and the readings are input into the computer, which then adjusts the time to allow for the proper dosage. The dosage determines the amount of time the treatment is administered, not the other way around. The doctor gave me an appointment for Tuesday to review my treatments. Several weeks ago he told me he must decide whether to "go deeper" after my lymph nodes, and I got the distinct impression this meant switching to protons. Can only hope I'm reading this wrong.

So here we are, after the third week and fifteen zappings, and the worst side effects I can report include increasing fatigue and an ear that feels sunburned. The fatigue is a real drag. For a self-employed person no workee equals no eatee, so I've been trundling off to work every day after radiation. Yesterday one of my colleagues dropped in and told me she'd seen me leaving skid marks on the sidewalk from hauling my rear to the courthouse. I feel just as I did in college when I came down with mononucleosis in the last month of my last year and had no choice but to continue going to class, writing papers, and taking exams. Brutal.

Intense feelings or aggravation or agitation can bring me down in a hurry. I'm usually a very energetic, some say hyper, person who feels energized by debating or generally dealing with people. The other day I was arguing with a prosecutor over disposition of a minor case and actually started to stagger with exhaustion. I had trouble finding words and that really scared him. Poor guy made me go sit down until I could pull it together. Looks like I should avoid taking on any jury trials or anything requiring intense preparation.

Other than fatigue I'm feeling more pain and sensitivity in my teeth and gums, the side of my head feels stiffer, food is looking less attractive, and I've opened up a sore right above my earlobe which bleeds occasionally. Every day a technologist marks my head with either a green magic marker or a red magic marker (depending on the technologist) prior to treatment. The red has leeched into the gray hair surrounding the site, which when added to the green on my face gives me a slightly Christmasy look and opened up a lot of good natured ribbing.

Fourth Week of Radiation Done!

Posted By: CarlaFW
Date: Saturday, 1 September 2007, at 10:49 p.m.

Well, another week's gone by and other than even more fatigue I'm still feeling pretty darn good.

The skin on the left side of my face is taking on a very sunburned look and my ear feels increasingly as if it's blocked or full of ear wax or something. Though unpleasant these feelings are not terrible and I have been able to continue working, albeit with a reduced schedule and frequent little catnaps. I definitely require more rest.

The doctor and I met briefly on Tuesday, during which he told me he's very pleased with my progress thus far and anticipates the treatment concluding about two weeks from now. Happy news. Two days later his assistant stopped me and asked if I understood the doctor was talking about current electron treatments for the area next to my ear and not necessarily about the lymph nodes. D'oh! If he decides to go after the lymph nodes it'll be no more nice electrons and hello photons. As I told the techs, no one ever hears Captain Kirk telling Scottie to arm the electron torpedoes, and anything that can blow spaceships out of orbit, like photon torpedoes, just can't be good for your body. Didn't hear any disagreement there, although the girls did ask if I always think in popular cultural allusions. Um ... yes?

Anyway, I'm still able to sort of taste things and beer and wine have not lost their charm (hooray), thus allowing me to continue swilling at baseball games and Bar functions. And I can't begin to express my gratitude at being able to drink coffee in the morning. Have to be careful not to burn, but boy do I need the caffeine. The aggressive prophylactic treatment of my teeth also seems to be helping. I floss and brush several times a day and use fluoride treatments. Still no major complaints about them.

So that's it. More of the same, with no big surprises, and that's fine. One can get used to anything if one does it enough.

Fifth Week of Radiation Done - and Over?

Posted By: CarlaFW
Date: Friday, 7 September 2007, at 9:23 p.m.

Today I was told that my last electron treatment will be on Monday - just one more day. Then, after a rest of about a week to ten days we're going to move on a brief session of IMRT photon radiation - to take place between a week and a half and three weeks.

My ever helpful friends have suggested that we find a Star Trek costume for me so we can get in the mood for the "photon torpedoes". I can't see any downside. I suggested that I take the Lieutenant Uhura role, but these same friends say that I simply don't have Nichelle Nichols's legs and maybe I should stick to a Captain Kirk/Scottie scenario.

Overall, I cannot complain about the electron treatments. Despite periods of extreme exhaustion I'm able still to work and even go out with friends or to a ball game. Part of this is probably due to my natural high energy, but a lot is due to the fact that electron radiation is a much more superficial type which does not cut through everything in its path.

So, after five weeks I can report a sore ear, slightly impaired hearing which will probably resolve itself over time, pervasive fatigue, and a rather sunburned looking side of my face. I've lost my sideburn, the radiation leaving a smooth edge to the hair almost to my temple, which looks as if I went after it with a razor. My hair is shortish, but long enough to easily cover the missing little hank of hair.

All in all, not a bad experience.

Sixth Week After Radiation Started

Posted By: CarlaFW
Date: Friday, 14 September 2007, at 9:03 p.m.

I did my last electron radiation treatment on Monday. Nice to have a break from the festivities before I start on the IMRT ... now with more photons!

The staff warned me that I would continue to feel the effects of the treatment for days afterwards. I think I walked out of there expecting to be completely normal (to use the term loosely) by Friday. Instead, my skin continued to get flaky and irritated and I started to drag quite a bit by today. But come to think of it I've been working late and intensely, and my drama prone family has had more than the usual share of crises this week. The only thing for the flaking/itching is keep slathering on the Alra Therapy Lotion. Great stuff. It really does help. My doctor called me out of the blue today, told me that he does this each Friday with everyone who's completed a course of radiation, and asked how I am. He told me all sounds normal and is looking forward to seeing me next week for a review and the simulation for the IMRT. Since I spend most of my time listening to other people's complaints and dealing with their problems it was gratifying to have someone ask me how I am.

I used the extra time granted by my lack of a regular RT meeting to search the web for an appropriate picture of Captain Kirk and Scottie to present to the girls at Radiation Oncology in honor of the "photon torpedoes". The dialogue goes like this:

"Arm the photon torpedoes, Scottie."

"Cap'n, ah cannae do it. She's a menopausal woman, dangerously unstable. One wrong move and she's likely to blow."

"Never mind that, Mr. Scot. Give me those photon torpedoes."

Cue cheesy 60s Star Trek music.

Might as well have a little fun with this.

Send in the "CAT"

Posted By: CarlaFW
Date: Wednesday, 3 October 2007, at 7:44 p.m.

Well, it was off to the radiation oncologist today for evaluation and review. Fresh from a triumphal five week tour of electron world (Now, with more linear acceleration!), I am now preparing to embark on a three week course of photon therapy, which I like to refer to as breaking out the photon torpedoes.

Before we start it's necessary to get a "CAT" Scan tomorrow. Yes, yes, I know, it's actually a CT Scan. Boring! I'd much rather have it done by a cat. I can see it now (scene goes all misty into black and white):

"Okay Carla, we're going to do a 64-slice CAT Scan to map your head and neck. Here kitty, kitty, kitty ..."

"Mrrrowwwwrrr, pfst!"

"There you go, kitty. Come on over to Carla."

"Nice kitty, do your damage. We need 64 slices."

"Hey, are you sure this is safe? That cat looks angry ... no don't ... mreowwwrrrhhhrrowwww ... pfsssttt! Ow, for pete's sake, what are you doing?"

"Come on, kitty, just 4 more and we're done."

"Rowrr!"

"Ackkk, I'm bleeding!"

"All done, Carla. Don't you just love our brand new 64 slice CAT scan? It's the latest in medical technology."

"Hackk, spft, hackck ... "

Ooh, a hairball. These technical problems happen sometimes ..."

The "CAT" Would Have Been More Fun

Posted By: CarlaFW
Date: Friday, 5 October 2007, at 12:01 a.m.

Today I went for simulation in preparation for photon radiation starting next week. All in all I think my idea about using a "CAT" scan was more fun than today's adventure.

I was ushered to a back room, where once again all my idiot questions were answered fully and completely. This bunch is unstoppable.

A radiation tech, or maybe she's a dosimetrist, told me she was going to assist in making another mask for me. Ruh roh! Now, for those who've been following my adventures you know that I was actually fitted for a mask about two months ago, and then when I showed up for my electron treatments they just had me tilt my head, placed an ear shield and a bolus on my ear, and zapped away for five solid weeks. No mask, just a warm, electric sensation.

So I asked: "Why no mask before?" Turns out a mask can't be used in electron treatments because the poor little sensitive electrons just get absorbed right into the mask and lose their effectiveness. This makes them sound sort of wussie, albeit rather soft and cuddly.

Now the photon torpedoes have no such problem. They're a leaner, nastier form of RT; sort of like the kids in my old neighborhood growing up. Photons are gangsta to electrons' wannabes, so they'll go right through the mask and pretty much anything else in the way, impeded only by the MLCs. The way the dosimetrist explained it the MLCs are dozens of tiny lead leaves which can adjust and flutter to block and direct the photons, which allows them to do their work while avoiding damage to surrounding tissue.

Still awash in the glow of new-learned useless information I was directed to sit on a table next to the CT scanner. The doctor, the physicist, and dosimetrist all gathered around and started talking in tech speak and numbers at each other. Always at times like this the magic markers come out and before I know it there are multi-colored circles, slashes, and little exes on my face and neck. Everyone's got a favorite color it seems. After rendering me suitably ridiculous looking the team decided it was time to mask up. Mr. C., the physicist, cheerfully declared that they were going to make my neck hurt now. Hey, the man was being honest.

The table had a little plastic stand for my head. Apparently these stands are labeled "A", "B", and "C" depending on size. They tried the B, then the C, then the B, then finally the A. I felt like Goldilocks choosing a bed.

Everything was fine until they asked me to tilt my head back, then farther back, then pretty much all the way back while perched on the stand. Oy! I was handed a big ring to hold between my hands.

The ever-cheerful Mr. C approached with a large round yellow frame across which was stretched a hot, gauzy, waxy-looking membrane, like a thick piece of Saran wrap, and without further ado pressed it down around my face and locked it into the table.

This can be a startling, confining experience. The waxy stuff is very warm, but starts immediately to cool, and as it cools it hardens. You can breathe through it, and see through it, but as it dries you feel it adhering to your forehead and chin. In my case the tech speak kept right on going, with the dosimetrist and Mr. C marking pieces of masking tape and slapping them onto strategic parts of my mask. Occasionally the magic markers came out again.

Eventually all the scribbling and tech speak was done and the machine was turned on and I was sent into the scanner, then back out again. There seemed to be a lot of this in and out stuff, with the dosimetrist, Mr. C, and the doctor occasionally wandering back into the room to fuss over the mask and speak in anagrams and numbers some more.

At one point Mr. C started poking my chest, as if he was looking for my sternum. It turned out that my surgeon had what my radiation oncologist regarded as an obsession with my chest - not the good kind of obsession, mind you - but a concern that tumor cells may have migrated there. I was sent into the scanner yet again to take pictures almost to my waist. Then the dosimetrist tattooed two little marks on my clavicle, which she laughingly called the "vampire bite", and we were done.

By this time I'd been almost an hour with my neck locked into an unnaturally tilted position and things were getting uncomfortable. All you can do in such a position is stare upward, which in my case meant watching the two green laser lights on the ceiling, then the blinking red lights as I entered the scanner, then the whirring thing inside its frame inside the machine.

Finally the dosimetrist came out and unsnapped the mask from its base. By that time I was stiff as a board. The doctor explained that everything was clear and it was nice to hear there were no masses lurking in my lungs or shoulder. The area to be irradiated is about 15 centimeters, from the mastoid process down to the clavicle.

So that's it. The dosimetrist showed me all the pictures and the area to be treated. I told the doctor that I'm not claustrophobic, but after an experience like that was considering taking it up, and he laughed and replied that he has a lot of angry friends who insist on entering the machine feet first or even sedated.

I toddled off to work, which is where I discovered the criss-cross pattern of the mask still on my face, where it remained for a solid hour and a half before fading.

So, the long and short of it is that the mask can be annoying and confining and a little unnerving, but even an hour in the darn thing does no real harm, and for my treatments of course I will be in it at most for a couple of minutes. No big deal, but I still would have liked a cat in there with me.

Arm the Photon Torpedoes, Mr. Scott

Posted By: CarlaFW
Date: Saturday, 13 October 2007, at 1:20 p.m.

Well, I've started my latest round of radiation, this time with photons. Except for the incredibly confining mask, the length of time spent getting zapped, the direction in which I'm being zapped, the multiple zaps, and the difficulty of lining up my uncooperative shoulder with my equally uncooperative neck, it's exactly like electron treatment.

When one hears that one is going to get two different types of treatment one assumes that there will be two different machines. However, now I'm back in the old room with my good buddy the Clinac21EX/23EX linear accelerator. It turns out that linear accelerators are used for multiple purposes, making them the Ronco kitchen tools of the radiation world. Darn things have more diversity than a New York street festival.

With nothing better to do I slipped into toddler mode this week and asked a lot of stupid technical questions. The main machine is called the gantry. That it rhymes with pantry makes it all the more kitcheny to my ears, and the fact that it strongly resembles a gigantic '70s era Sunbeam mixer doesn't help. The mixer head is referred to as the collimator, which sounds suspiciously like colander. The collimator is very versatile and has a number of grooves and locking mechanisms for the insertion of various implements to assist in the administration of the radiation. In my case there is a metal tray called an MLC wedge which slides and locks into place, and helps to shape and direct the beam.

On Tuesday I reported for what I assumed would be my first treatment, but it was actually another picture taking session. I got on the table, technically called a couch (a really hard, flat, narrow couch without any fluffy cat pillows, decorative afghans, or bouncy cushions), and the mask was strapped over my face. It is extremely snug, but does not hurt. With my head tilted pretty far back the edge of the mask butted up against the top of my throat, and with inhalation I felt the jugular pulsating against it. Ick. I found myself delaying taking a breath just to avoid the sensation. I was then elevated pretty high, and the couch slid under the collimator. I mumbled a request through my mask for a doughnut (mmm, doughnut!), which is the ring I hang onto with both hands so my arms don’t slip down my sides and ruin the setup. The doughnut is a wonderful invention, especially for those of us who may be a bit over-nourished.

My vision from the mask is somewhat obscured but good enough to see the flat metal of the collimator, and the rectangular hole through which I could see more metal layers of varying shapes, and a white light. In the ceiling there is a cross-shaped hole out of which comes a green laser light. For this session I could see my reflection from the glass covering the hole in the collimator, and saw reflected a green line which traced the line of my clavicle. The technician and dosimetrist fussed over me with a green magic marker and started the usual routine of speaking in jargon and numbers. The technician carefully drew a line (green ink this time) from the top of my throat through the tattoo marker and to the next tattoo marker, then traced the green light down my clavicle and then up to my shoulder, following the line of light from the rectangular opening above me. The result was an incomplete rectangle, with the top open. Then they inserted the MLC wedge and the light was bent by the presence of a series of ridges, like little steps, in effect creating a step-shaped shadow on my skin. This too was carefully traced and the blocked area colored in a little. It ended up looking like a diagram from a kid’s science fair project on how waves create sand dunes. Charming, especially after I couldn’t get the ink out completely, even with a shower the next morning.

Then commenced the picture taking. It seems to me we do a lot of this. At times I feel like a celebrity fashion victim what with the technician running into the room with her digital camera for another shot of the hospital gown-clad plump lady strapped to the couch, and then the x-rays from the gantry. They took a series of x-rays from the top, then rotated the gantry upside down and took more pictures from beneath me. I hadn’t noticed before, but the couch is actually just a big grid with a kind of plexiglass covering it.

After the session I asked a lot more stupid questions. It seems I am receiving 176 cGys (they used to be called rads, but are now called grays after a British physicist, and designated by Gy) on the top shot, and 117 cGy on the bottom shot. At my first treatment on Wednesday I went through the first zapping, then lay there perplexed and wondering if I should try to move, when the gantry suddenly rotated upside down and they administered the second dose. The first dose is always around 40 or 45 seconds by my count and the second is about 25 to 30 seconds. The doses are administered by 100 monitor units, or M.U.'s. As with the electron treatments the time varies for each dose based on environmental factors.

So far I’ve had three sessions. Setup is more complicated than it was for electron treatment. The mask has to be strapped on and my shoulder has to be lined up just so, and then the lights have to line up exactly before they commence. I’ve already noticed a nasty stiffening in my shoulder and will have to ask about possible physical therapy or exercises for the problem. After my third session on Friday I went off to court and while standing in a hallway felt a wave of fatigue rise from my ankles and swell over my head. My voice is starting to feel a little raspy, and I expect that I might have a sore throat by the end of next week. Given a choice I would say that even a free week at the beach inclusive of admission to the seafood buffet would not induce me to stay at Club Rad, but sometimes we have to do what we have to do. It’s not jail and it’s not permanent, so I’ll keep on trudging to the Radiation Oncology office every morning until they tell me to stop. It beats having yet another doggone surgery.

At any rate I can still work, and so I do, and last night a good friend took me to the National Italian American Foundation gathering in D.C. with a show by Neil Sedaka. My friend did the whole radiation thing for breast cancer, plus chemo, which I don’t have to have, so I’m still coming out ahead. We went and had a great time and met some charming Canadians and found out that Neil Sedaka is at least part Italian and in fact can sing and speak in Italian. Who knew? Life goes on.