Photon Freakout

Another couple of weeks have gone by and with them seventeen photon treatments; seemingly endless treatments. It's hard to remember what it was like not to report to the hospital every weekday. I'm there walking the hallways so much that not only have I found all the shortcuts to the cafeteria, but my presence in areas usually traversed only by maintenance and other staff goes unremarked. A familiar face, I blend into the surroundings. After including x-rays over the last few days I had hoped to be told that today was the last treatment. It was not to be so. My reassessment is on November 2nd.

Anyway, the latest installment of my Parotid Tumor Patients' Forum Journal is done, so I'm posting it for whatever it's worth to whomever might wander by. Here it is:

Photon-a-Palooza: Radiation Cogitation

Posted By: CarlaFW
Date: Friday, 26 October 2007, at 9:34 p.m.

To everyone waiting with bated breath for last week's posting which never came, I'm sorry. You can breathe now. The fact is that I fired up the old computer all ready to type away, a copy of Moby Dick beside me AND a re-run of Star Trek, Next Generations on the telly for inspiration, and I just ran out of steam. Crashed. Too pooped to pop, I ended up lying on the couch (a real couch with bouncy cushions, the decorative afghan, etc., not that thing at radiation oncology some comedian named a "couch" and which is actually a hard narrow table not made for large middle-aged women with dicey backs and plump thighs). Lacking any cat-themed throw pillows I instead propped a real cat on my chest and a Jack Russell terrier across my hips. The cat lay there for hours, gazing into my face with disconcerting feline opaqueness and occasionally pricking me awake with a single, casual claw to the top of my sternum or sticking her bewhiskered nose into my open, lightly snoring mouth. Glad to know there are some things which can make me more uncomfortable than the mask.

Before proceeding I must congratulate Jodie for somehow managing to weave the mini-series "V" into a discussion of Hannibal Lector by way of offering a cogent explanation of why the mask makes us look like cannibalistic reptilian pseudo-aliens. Liver with fava beans! Sounds, um, not too good, but the man's a cannibal and there's no accounting for taste.

Now, as for the last seventeen days of photon goodness, anyone can get used to anything if it's reduced to a routine. It's just very tiring and a little unnerving.

I've spent the last few days pondering WHY it's unnerving. It's not the staff, the facility, or even the process itself. The staff is just wonderful. I couldn't say enough about how helpful and kind they've been. The facility is modern, well-lit, with good chairs and lots of reading material and water and strategically placed baskets of crackers. The process, too, is non-threatening and mundane, a routine during which a friendly technician usually opens a door and tells me to go on down the hall to the treatment room, where I am always greeted by one or more of the personnel, usually a technician and/or a nurse and/or a dosimetrist and one of their new interns. The interns are always young and enthusiastic; cute, but competent, who remind me of my own dear 21 year old daughter. An old hand, I stroll into the treatment room and wait for them to complete setup so I can lie down.

Setup changes from patient to patient depending upon the treatment ordered. If I enter the room after a breast cancer patient has been in there I'm likely to see two stirrups off to the side, and a little round stand for the patient's head. The stirrups are for the patient's arm, which must be placed out of her way while the breast is irradiated. This setup is of a piece, with that portion of the table being removable, stirrups and all, and another, flat portion of table laid down in its place. The setup for a head and neck patient like me consists of a rod containing little pegs placed in grooves on the table, upon which a sort of tray is dropped into place on the pegs, and which itself may have some pegs for placing in the table's holes, for stability. Near each corner of this tray are latches: round buttons with flat metal prongs on them which can be turned to hold in place the clear plastic headrest. The misnamed couch is in fact like a Lego pegboard on which many setups can be erected, or maybe it's just a big game of Battleship.

I lie on the couch and arch my head back a little for the mask, which is placed over my face and firmly strapped down. I can move my face inside of it a little bit for comfort, but comfort is a matter of perspective. To me, comfort means that I feel constricted, but not so constricted that I think I'm suffocating. Staring upward at the blue sky ceiling panels through the gauzy fuzziness of the mask I feel the couch slide silently under the collimator. Treatment rooms have these things - blue sky ceiling panels and walls with scenes of flowers and gardens - an effort to alleviate the claustrophobic sensation of a room without windows. Talking is impossible - probably not a bad thing - and I can only stare upward at the machine. I've memorized the innards of the collimator, trying to guess the depth of the hole through which the white light comes (maybe 18 inches?), and noticing the tell-tale wedge formation of large MLCs just below the light. Much of the structure looks like the inside of an SLR camera lens.

At some point during the treatments we decided to dispense with the hospital gown and instead treat me in my work clothes. Some mornings the shirt has to be taped down to reveal my clavicle and the little tattoo dot next to it. Considering the difficulty of lining up something as round and irregular as a neck and shoulder, the crew works very fast and efficiently. Reflected in the machine I sometimes see the green laser line tracing down my clavicle. Sometimes an ink dot enhances the underlying tattoo. Sometimes the green laser light isn't on, and I can see reflected the piece of tape, a line carefully marked down it, which courses down the left side of my mask. The reflections are obscured when someone slaps the MLC wedge into its slots on the collimator and I read the legend: "30 cm x 40 cm 15 degrees steel".

Happy with their work the techs walk out the door, a huge 12-inch thick door with a red radiation caution sign on the outside, and leave me alone on the other side of it. Sometimes I hear a "poomf" noise as the door softly closes. I have often wondered whether this sensation of being left alone is what is so disquieting, but think not. I've never minded being alone. As a child I used to hide in closets and under beds, avoiding parental scrutiny and reading voraciously by the light of my Girl Scout flashlight. Nope, solitude for me can be comfort.

Alone in the room there is nothing to do but wait, with an odd sense of anticipation, for the treatment to begin. No announcement precedes it, just silence and a sudden buzzing noise from the left which goes on for over forty seconds. The buzzing stops, and the collimator rotates to my left. Someone enters the room and removes the wedge, then leaves again. Another soft poomf and the collimator rotates all the way under me. Sometimes the green laser light is on and I watch two narrow lines of green chase each other across the ceiling, and then the bottom section of the machine is above me; a flat, gray mass with a piece of masking tape across it with "Do not rotate beyond this point" written on it. I wait, and another buzzing starts, this time for 30 seconds or less. One day last week the buzzing stopped after only a few seconds, and I lay there confused and wondering if I should move, until it started up again and completed the dosage. Somehow a switch had been accidentally hit.

A few days ago as I lay on the couch after a session I glanced up and noticed a surveillance camera in the corner. A technician told me the camera shows each patient in the room, and all that is necessary if I am ever in distress is to raise my arm and they will come running. This is good to know. Perhaps I will work up the nerve to start flashing gang signals or make little animal shapes one of these days.

On top of the treatments there are x-rays. Lots of x-rays. Maybe this is the source of the disquiet, the sensation that on top of the unnatural amount of radiation I receive each day there are additional rads coming through my x-rays.

Maybe the disquiet is related to physical reaction to the treatments. In the mornings I receive a treatment and sometimes upon getting up from the couch I feel a blocked sensation in my ear, or a coarse static. Sometimes I feel a delayed electric sensation swelling my throat or lips for hours afterwards, like an overdose of sun at the beach. My voice comes out croaky sometimes, sounding like the eternal teenage boy on The Simpsons. My gums hurt and my teeth are sensitive. My neck is red on the left side and I think of how appropriate it would be to have Gretchen Wilson singing Redneck Woman just once in the treatment room. I'm tired and my brain is foggy. How many times have I had to explain to people that if it is not in front of me I may not remember it? Or that I cannot quite recall things which normally would be at my fingertips? A natural chatterbox from whom words normally gush unimpeded and heedlessly, I suddenly find myself groping for words at times, reaching across the radiation-induced drought and stumbling over pebbles of thought as I grope for pools of my former loquacity.

So, perhaps the disquiet is this; the feeling after decades of being warned of the dangers of radiation, of being taught to "duck and cover" in the early sixties at my grade school, of living through the Cuban missile crisis at ground zero in the DC area, and through the no-nukes movement of the late seventies, that being on the wrong side of the danger sign on the blast door is abnormal. It's a cognitive disconnect to be on the wrong side of that door, in a room with false windows, and next to a machine which is giving me the equivalent of dozens, or maybe hundreds of x-rays every time I'm there, not just from the front but from the back, also.

Notwithstanding this disquiet, every day I report for treatment, and every day walk from the room unimpeded and generally unscathed but for the minor complaints put forth above. There is nothing here from which I will not recover. The disquiet is in the end like the monster under the bed, unsettling but not real. It is tolerable, and as I embark on the next week of treatment I understand that I will feel a bit worse before I feel better, but that this will be but an interesting topic of conversation at dinner one day, a set of experiences out of which I might weave a tale, its tone either somber or amusing or informational, but something which will be in the past. My future does not include this disquiet. All is well.

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.