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.