Radiation

So this post is super late, because I'm in my last week of radiation, but I wanted to give you guys a little description of the radiation process.

I went in for preliminary appointments about 3 weeks before my first radiation, where they laid me on a board on my back and put me in a position with my arms over my head, slightly bent. Using a series of pegs and crafted a system around me to make sure that each time I came in, I'd be in the exact same position. They gave me a series of tiny stick & poke tattoos on my chest and side as reference points and spent about an hour measuring everything and doing a series of CAT scans to be sure it was all properly aligned.

(My rad new ink. Not all of it, just the speck in the middle.)

It was the first time of what came to be many times in the next couple of months that I'd be in a room with strangers or semi-strangers, naked from the waist up, lying on a board inside a massive machine that they have to leave the room to protect themselves from. That in itself is an odd experience, but for being the first time, they were incredibly caring and conscientious about what I was going through, and covered me with a sheet whenever they were able.

I cracked a lot of jokes, which made us all a little more at-ease. At first they had the sad-cancer-face syndrome. I guess the majority of people going in there are freaked out about, at least more than I was that first trip. They did have a sense of humor, though. This was on the ceiling going into the CAT scan machine:

About 90 minutes later, I was done. Went back to the Island to finish my time there.

Three weeks later, I packed everything up and moved up to Boston to the Hope Lodge to begin daily radiation therapy.

Radiation happens in the third lower level of the Lunder building, which is next to the Emergency Department, so there's always a lot of traffic coming to and fro. The only thing down on LL2 & LL3 is radiation oncology, so if you're on the elevator, they sometimes give you a slight sad-cancer-face look when you press the button.

Every day I walk in past the desk of two very lovely ladies, both named Janice, who run the place. They know everything that's going on and they're the gatekeepers of the radiation unit.

I walk down a hall to the left, through double doors to the back, where there is a check-in scanning station, a changing area, a beverage/snack area, restrooms and two waiting rooms. Everything is open, airy and spa-like, with warm lighting, frosted glass dividers, and a two-story ceiling in the waiting rooms that tricks you into forgetting that you're four floors underground in the basement of a massive building.

I change into the hospital gown and put my things in a locker, take a key and go to my waiting room. How prompt they are is entirely dependent on who else showed up on time that day, if there is a lot of traffic, etc. Sometimes you can get in early if you show up early. Other days they could be 45 minutes behind schedule or more.

(At least they're honest that this could take a while.)

So we all sit around in an intimate waiting area, in a state of semi-undress, with familiar-faced strangers, for an indeterminate amount of time, as we wait to be called back by our first names. That's how you get to know everyone who has your similar time slot: by whatever the techs call you when they come to get you. I suppose, then, my waiting room acquaintances know me by Katherine.

They lead me down another hall into a massive room, in the middle of which is a proportionally large machine. I couldn't figure out how to describe it, so I took a picture:

You can see the cupped shapes where my arms are braced. The blue bar is where my tailbone goes. The red shape holds my head and neck in proper place. At the top left of the photo, you can see the white & red light-up sign indicating whether the beam is on or off.

They triple check my name and birthdate and I slip my right arm out of the the gown and lie down on the board in the supports they designed for me in that preliminary visit, both arms above my head, gripping onto precisely-placed pegs. The left side is covered; the right side is not.

They spend a few minutes lining everything up to the tattoos they gave me in the initial session. Three of them position me there, scooting me over and back and down in tiny increments using a cloth that I'm lying on. I have to fight the instinct every day to assist them, or to have tense muscles while gripping the pegs. It's against my nature to lie there, exposed, with people jerking and wobbling me into the proper position, not sucking anything in or bracing anything or assisting them at all. Being passive, for me, seems to be one of the hardest things to do.

They affix the chin strap--yes, there's a chin strap--and then they leave the room with a ding, which signals that they're clear of the room and the door is closed so the radiation can start.

The first few times, it was jarring to think that they had to put in place all these precautions to keep themselves safe from the thing that was being beamed directly at my semi-naked body every day.

The radiation itself takes a varying amount of time. They usually beam about 2 fields, then come in and readjust things for the lower field before leaving again and beaming another few. All in all, it runs about a minute per day of the red "BEAM ON" light being lit. I don't know if the radiation is on that whole time or not. I hope not.

The machine moves all around you and the large panel on the bottom extends and retracts, I'm assuming to reflect the beam back. At one point the top of the machine has rotated around and is underneath my right shoulder, beaming me from the back.

When you're first setting up and are lying there, looking up into where the radiation comes from, there are a series of metal pieces inside the machine kind of like the aperture of a camera, that move apart and fit together like knitted fingers to form the shape of the field.

When it was the full dose for the first six weeks, it looked like someone flipped the state of Oklahoma over so that the Red River ran along my collar bone and Boise City was in my armpit. After the first field was done, they'd come in with a Sharpie and draw a dotted line right on my chest, right about where Arkansas City, KS was, so they could tell where to position the next field, which was a simple rectangle. I guess I could call that one Wyoming.

The rectangle directed the radiation from about my third true rib to the bottom of my sternum, and from the midline of my chest around the to back of my armpit down my side, to meet another tiny tattooed speck. It was a big field: about a quarter of my torso. They had to be sure to get the lymph nodes and the tumor-adjacent tissues, and all the places they know that rogue cells would be most likely to hide.

I'm in the final week now, called the "boost," where they focus the radiation just on the tumor site. The field now just looks like a boob. Or, rather, like a capital D on its belly. The zaps themselves feel longer now. I had one the other day that seemed like it was a minute, which was so long, I nearly called out to make sure they didn't leave the thing on accidentally. But it's the boost, so I suppose that makes sense.

(WARNING: I'm about to talk graphically about my radiation burns. Skip this if you're squeamish.)

THE BURNS

The burns, well, they're pretty painful. The skin for a radiation burn doesn't just get red and blister; it's as though it disintegrates in place leaving raw flesh and nerves exposed. I did everything they told me to, moisturizing the entire area with thick cream three times a day. I used calendua on the parts that were getting redder and Eucerin on the rest. They told me to use Aquaphor, but it's petroleum-based and it felt like it was just making me hotter. For the first six weeks, every time I saw the radiation oncologist, he kept asking me "what are you doing? I thought this would be so much worse!" Apparently for those of us with bigguns who have a lot of boob left, the stress on the skin is much worse.

Up until the end of week six, it was red and felt hot, but like a mild sunurn, with no skin breakdown. One silver-dollar-sized patch of skin on my collar bone was redder and hotter than the rest, but still not terrible. You can see it here, and man, do I look tired!

I made it through the full-field radiation, so I thought I was in the clear, but that's not how radiation works. Six days ago, I started to notice that the spot began to change texture. Tiny little bumps appeared.

The nurse had warned me that the burns would worsen for about two weeks after radiation ends, and then they'll start to get better. I logically knew this, but I wasn't prepared for my impressively great skin to go from reddish to absolutely broken down in about 48 hours. Saturday, it was okay. Monday, it was raw and on fire. I've been dressing with large nonstick gauze pads in my bra, cushioning the band along the bottom. I finally found a decent hydrocolloid dressing for my collarbone, because that spot now looks terrifying. Uncovered, you can see the remnants of the dissolved skin sticking to the top of the rawness below, like ghostly pieces of tissue paper floating in water.

Underneath where the bra wraps around my ribs, it feels like my breast is pulling away from my chest wall. It is split open there, and the skin surrounding the area is a deep and angry red with tiny white splotches. You can see every furious pore and follicle, and some of the capillaries supplying blood to the area. The redness runs all the way to my underarm, along the lymph node removal scar. It's a strange pattern; you can see the exact shape of the radiation field: stark red lines that align with tiny tattoos. You can feel the heat always. And it keeps getting worse. Last night, a large patch of micro-thin dry skin was left in my bra when I took it off. It didn't hurt--it was like a peeling sunburn--but it was rather unnerving the same.

(heh heh.)

I feel like I should pause for an aside.

I write this, not to make any of you feel bad for me or to bemoan how awful things are, but to have a record for the physical experience of it all. Yes, it's physically pretty terrible, but my whole life isn't focused on this. I'm pretty damned tough and pretty damned stoic, and I get through the day just fine, albeit extremely fatigued. (Seriously, the fatigue cannot be over-exaggerated. It's worse then when I had mono in college and basically slept for a month. I could pass out standing up mid-sentence at 11 in the morning on a sunny day.)

But throughout this whole experience, I wanted to talk to someone who would to lay it out for me. I wanted someone to be honest about what I was about to go through. I didn't want pink-washing and "you got this" and all the fighting/warrior/motivational talk that glosses over the nasty stuff. There's a place for that and I appreciate it when people want to encourage, but going into something that I knew was going to be physically taxing, I wanted to know how soon it would get bad and how bad it would get. I wanted to know what other people did that seemed to work. I wanted to know if there was a trick or a cream or a habit that they found to help, and I didn't find a lot of that, save for some facebook groups, so I decided I'd write about it.

I also have a lot of friends who kind of want to know the dirty details, but who are too afraid to ask. But if you know me, you know I'm not afraid of the details.

So here we are.

Back to radiation.

As I write this, I have two more boost treatments left, and then I can (carefully) pack up and head back to the Vineyard to rest as much as possible before making my final trek back down south to be home for good.

My final round of medical appointments is the week of the 15th. I have my last round of Herceptin on the 18th, leaving me three weeks to get back to New Orleans and settled in with the new oncology team down there, and to line up my next Herceptin.

My friend flies in from Scotland on the 16th, and she'll be my copilot and help with the driving down South when I'm too tired. I'm hoping for a tiny bit of New England fall colors before I leave, or at least a cup of hot cider on a chilly fall day. These are things we don't have in New Orleans.

It's so close, now, I almost don't believe it, especially when here I am still going to the daily appointments and taking care of business and nursing my wounds. It just doesn't seem real. Am I really going to ring that bell on Friday? Can I even make it through ringing a bell without losing it? Does that mean active treatment is over? Is that it?

I started writing that blog a few months ago, so I guess I should go back and finish that one, and leave this one for tonight.

Sweet dreams.

Just two more to go.