After that first week of scattered afternoon appointments, I am now scheduled for radiation every week day at 4:15 pm (except Tuesdays when I see my doctor and go in earlier). I actually like being one of the last patients of the day because the waiting room is generally cleared out and I am sent back to change without much sitting around. When I had earlier afternoon appointments I waited anywhere from 15 minutes to 2 hours. I wasn't a big fan of that.
So here is my daily routine. I generally allow myself to sleep in without waking up to an alarm because my doctor and the nurses have emphasized how I need to get a lot of sleep and my good sleeping habits are once again slipping away from me. I blame Tamoxifin - the hormone therapy I will be on for the next five years - which gives me hot flashes, which always seem to flare up as I'm going to bed. I then go into the office for a few hours before I head to Chelsea for my daily zapping. It isn't so bad.
After a short (or sometimes lengthy) wait in the main waiting room, my name is called and I go back to a small locker room to change from the waist up into a hospital gown. The one downside to scheduling my appointment at the end of the day is the good gowns - the long sleeve seer sucker ones - are often gone and sometimes I end up with the kind that are meant to be open in the back. These are a little tricky to wear since they are very large and can't be tied off at the waist so my second choice - the kind I usually get - are the pink, short sleeve hospital gowns that wrap in front with a tie at the waist. I then wait in a second, smaller waiting room just outside the changing area and wait for my name to be called.
After a short wait (usually), one of the the radiation techs retrieves me and leads me to the treatment room. Before entering they ask me my birthday. I've learned this is kind of the secret password for everything at hospitals - nurses asked me my birthday before giving me chemotherapy drugs, the techs and nurses and orderlies who wheeled me around the hospital for surgery or sent me in for a scan always asked for my birthday before proceeding.
|all prepped and waiting for me (those blue things in the background are other molds)|
|this is at the end of my treatment so you can see how the whole machine turns - you can also see the red laser on the table|
But back to the procedure - in front of the machine is a table that has been prepared with the blue mold they made of my upper body back in December during my simulation that is covered with a white sheet. I sit down on the table, take off whichever gown I'm wearing and lay down with my arms folded over my head with my head turned to face the right wall. The table is then elevated off the ground 3-4 feet. The wall I am staring at has a red laser beam shooting out of it, as does the wall to my left, the wall near my feet and the ceiling. All these lasers are helping to line the machine up with the tattoos on my body, or so I presume. The radiation therapists instruct me not to move and shift me this way and that by tugging on the sheet underneath me or adjusting my arms or the tilt of my head. At this point, I'm pretty good at folding into the right position without a lot of adjustment . . . most days. There is a monitor to the left of the table attached to the ceiling like a TV in a bad motel that has information about me - Left Breast and a bunch of numbers. I assume the formula for how I am supposed to be situated. The therapist has a large remote control with a cord they poke at and fuss over.
And just before leaving the room he or she covers my breasts with a smaller white cloth. After sitting there out in the open for the whole adjustment phase it seems a bit silly to cover me for modesty's sake just as I am being left alone so I assume there is probably some other reason for the covering, maybe it gives my skin a little bit of protection against the radiation, I don't know. Or maybe it because there is also a camera on the ceiling pointed down at me. I was told they can see and hear me when they aren't in the room. I've never tested this. I should note that unlike with a mammogram or most x-rays, no one wraps a lead apron around my waist to protect my other organs. I assume this is because the radiation is so specifically targeted to my breast and underarm area.
The therapist then leaves the room and a giant steel door that is nearly three feet thick closes, locking me in. There is a beige hospital curtain on my side of the door which is usually drawn shut so I can't see when the door is firmly shut but the curtain gives a little wave as the door seals and then blows back in a bit when it is being opened signaling my treatment is over.
Once I'm alone, I hear a prolonged beeping noise followed by a series of noises I can only describe as Star Wars and robotic - some whirring and shifting and the machine adjusts, stops and another long beep. I have to remain still. I stare at the laser on the wall to my right and the rather patronizing words scrawled onto the drab, beige curtain - "be gentle with yourself", "peace," "speak your truth" and "calming" do not have much soothing effect when written on a curtain. I wonder who those words are there for - the patient or the therapists, technicians, nurses and doctors, who probably stopped seeing the words after their first day, if they ever saw them to begin with since they were never told to lie still on that table and either stare at a wall with a red laser or a curtain with impotent words.
More loud beeps and the machine shifts its position around me and at some point - sometimes at the beginning or sometimes at the end, the machine adjusts itself so that I am staring at the round face of it. Behind a plexiglass window are giant metal teeth which open and shut in some programmed pattern. I usually wonder whether I should be looking at those metal teeth that make me think of Star Wars.
The whole process takes only 10-15 minutes unless I have to get "films", which is a once a week event. This involves the exact same procedure only the machine is in x-ray mode rather than radiation mode and the plexiglass window is covered by a thicker, removable plexiglass plate that is removed after the x-rays are completed so my treatment can commence. Film days are more in the 20-25 minute range.
Once a week, on Tuesdays, I see my nurse practitioner and radiation oncologist. The NP walks through a form of questions with me and weighs me - my least favorite activity these days. Despite my return to a regular exercise schedule and normal (not vacation mode) eating, I continue to gain weight. I think a combination of things are at play here starting with chemo messing with my metabolism, followed by Tamoxifin which messes with my hormones. Breast cancer message boards are full of complaints of weight gain from women who went through similar chemotherapy treatment as I did followed by Tamoxifin. Some advise that the good news is the weight comes off very easily once you stop taking Tamoxifin. That won't be for five years. The bad news? Gaining 15-25 pounds seems to be the norm. I'm frustrated that my doctors, nurses and the other specialists who ask me about side effects and issues brush this off as no big deal. I guess the hard thing is my vacation gave me a glimpse at reclaiming my body - the active, strong body that can do challenging things - and I hate sitting back and letting it slide into disrepair again because I fear I will never have my old self back.
In terms of other side effects, I really haven't had anything related to the radiation crop up as of yet. But from what I have read and from what my doctor has said, it takes at least two weeks for anything to manifest - that is right about now. The biggest concern is the skin in the area being radiated. Currently I put Aquaphor - a greasy Eucerin balm - on my breast, under arm and chest area two or three times a day. I am not allowed to shave that arm pit and I am not allowed to use deodorant other than the hippie crystal kind that honestly doesn't have a fighting chance against hot flashes. I have also been told to stop using any type of scented soap and avoid scrubbing the area and can only pat it dry with a towel. I'm doing all of this although without any evidence yet of side effects some of it feels a little premature. I don't have any pain or burning or even fatigue as of yet. Although I have noticed I am more tired in the evenings and have a hard time getting up in the morning but compared to chemo this is nothing. Two weeks down, about four more to go.