Dear Diary #28 - What is Radiation?

 Hey Friends!

Apologies for not writing for a while. I've been a bit busy. Work is busy, I'm also working with a few real estate clients, and I'm driving to the city daily for Radiation (fondly known as rads, Jayden thinks this is much cooler). 

When I started this blog one of it's main purposes was to share ALL the details in the hopes that if someone went through it, or had a loved one go through it, it would maybe be less scary, or at least they would feel more informed. This post might be a boring one, and a long one by the time I am done, so if you aren't into a long and boring post you should stop here.....

I've had a few friends ask me 'what is radiation?' or 'how do they do radiation?'. So here is my long winded, detailed post. 

I covered my mapping appointment and my consult appointment with my Radiation Oncologist (who is lovely, by the way) in previous posts. So this is about actual treatment. 

The short answer is:

-Change into a gown (top undressed)

-Get on table, we'll get you all lined up, stay still please, take some scans, then zap you a few times

-Get off table

-Get dressed 

All this is typically accomplished inside of about 15 minutes (Good thing I have 2 plus hours to drive round trip for this very fast appointment......siiiiiigh). 

The long answer is that the machine looks like this:

So it isn't 'scary' at all. You are not enclosed. The room is large, and the techs are all super kind (they even offer warm blankets if you wish). 

Everything that I will explain here is totally uneducated and assumptions based on my experience. I have only asked a few 'what is happening' questions, so forgive me if I get it wrong. 

On the right side of the photo the arm that has the square boxes is called the thingamajig, but we'll just call it the zapper for this purpose. When I get on the table I have a gown on with the opening to the back, and I slip my arms out so they can have access to my chest (they are great about keeping you covered, but sometimes they need to see without cover). My head is in a cradle to help line things up and a block is put under my knees. I am laying on top of a blanket. The zapper is always above me when we start. And above the zapper is a box that projects laser lines down. These laser lines are used to 'line me up' to the tattoos they gave me during mapping. At this time, the two square pieces you see on the left side of the photo are not out like this, their arms have them back behind me somewhere (just the zapper above me). Two techs on either side of the bed discuss a bunch of measurements, and heights, etc. They tug on the blanket a bit to move me left or right, they 'roll me' a bit if necessary, and they adjust the height of the table until they are satisfied that I am in EXACTLY the spot the want me at each and every time. Then they leave the room.

At this point the arms with those extra square things come out (these are scanners, similar to an x-ray scanner I believe, they might actually be x-ray scanners, I never asked). They run a few scans with these from various points lined up around me. I did ask what they do with this, and am told that they basically are 'viewing' my bones (sounds like an x-ray) as a second check that I am lined up where they want me. They can see my collar bone, my chest wall, my rib cage etc, and it all needs to be 'where they want me' in order to ensure that the radiation treatment applied is always exactly where they want it to be. 

I lay the same as in the photo, with my arms over my head, resting my elbows on some piece of the table and holding onto a couple of handles behind my head. This looks way more uncomfortable than it is, although if you had a bad shoulder I can see where this could be an issue. For me it is comfortable enough, and it is really for less than 10 minutes unless there is an issue with the machine. They always remind me to keep my chin up also, so I assume that my jaw bone is at risk of being in the line/direction of the zapper.

Once the scans are complete a tech comes back in, uncovers me again and checks that the laser lines still match up with my tattoos. This is just a triple check, and I am told it is really just 'busy work' while computer checks scans and gets ready for the actual treatment. 

They leave the room again. (just because they want to fill ME with radiation, they are surprising careful to NEVER be in the room when the machine might be on, huh).

Then it is time to be zapped. So, do you see the small square inside the zapper? Inside that square (from what I can see of it) there are a bunch of slits of metal that meet in the middle (when closed) and slide apart to the right or left. What this does is allows them to create an 'opening' that fits exactly the shape that they want to zap ME in for each area they zap. This allows for very specific, targeted treatment that is specifically mapped to my chest wall. The machine for my treatment starts up and to the left of me at about 10 or 11 o'clock (like pointing across my left side, pointed at my right chest). This opening is a weird sort of polygon shape. They position the machine there, it beeps a few times, then zap! It only takes a few seconds, maybe 10 or 20 seconds at the most (I should count next time, lol). Then the machine moves directly above me, the internal shape with the sliding bars changes for that spot and beep beep zap! Repeats this movement after moving around to my back, directly underneath me, and beep beep zap! Then one more time at about my 4 o'clock., and beep beep zap! And done. 

That's it. The actual treatment itself is probably under 2 minutes, 3 minutes max. The changing into a gown, getting settled on the table, adjusted, scanned etc takes far longer. It is 100% painless, and I compare it all to getting x-rays done. Techs get you on a table, line you up, leave the room, take some pictures, and you're done. 

I know I didn't know ANYTHING about radiation, or how it was done, and I have talked to lots of people that also didn't know. So now we all know. I hope you enjoyed today's Ted Talk. hahaha. 

Outside of that moisturizing and hydration are both super important. My oncologist suggested two creams to buy (CeraVe and Glaxol Base) and told me to use them liberally, a minimum of 2 to 3 times every day. I take cream with me and apply immediately after treatment, then at least a couple of more times a day. They tell you to be very kind to your skin. Pat dry after a shower, don't rub with a towel. Apply soap to the area gently with  your hand. Don't wear anything that rubs (I am totally avoiding a bra when I can). And get air to the area for as much time as you can during the day, but minimum 20 to 30 minutes. Since I am still working at home I bought myself a couple of really loose tank tops that allow most of my skin to be exposed, or at least not tightly on my skin all the time. After I shower I lay in bed uncovered for a while each night. Seems to be working so far! Essentially Radiation has the potential to burn me, and if so it basically burns from the inside out. Today I did treatment #12 (of 16). My skin still looks okay. I would say that it is a bit more sensitive, and 'maybe' starting to darken a bit. Sometime people just get a 'tan'. Sometimes people get a 'sunburn'. And sometimes people get burns that are much worse. And the odd person has little to no effect on their skin at all. But the generally accepted principle is that because any burning happens from the inside out, it is actually AFTER treatment is done that the worst of the burning 'may' happen. Up to 2 to 3 weeks after. 

One of the side effects of radiation is fatigue. They strongly encourage activity every day, even if just out for a walk, to stave off the fatigue. They say the fatigue is accumulative. I would say the fatigue is real, but not unbearable. By the end of the day (at this point) I am unreasonably tired, but throughout the day it is not unbearable. Another potential side effect is permanent skin darkening. One of the areas that they are targeting is my right collar bone (this is a lymph node area). There is potential that the right side of this area will always be darker than the left, and will be noticeable in a v-neck shirt, for example. Whatever, this doesn't bother me at all, but I can see how it would bother some. Also a person could have skin tightening and cording to deal with, but this can usually be worked out through massage and such. The very very long term side effect of radiation is that it can actually cause other cancers. But they don't usually see this for about 40 years or more, so something they watch for, especially if kids require rads.

Today, I have 4 treatments left, 2 this week, and 2 more next week. I feel good. My skin still feels okay. But I can tell you the daily drive to the city is getting very, very, very old. I get a break tomorrow (no treatment), and am thankful for it. I know that this too shall pass, and I know that I am so so so close to being done. A couple of weeks at home after treatment, in case of any late burning, then back to the office to some sense of normal!! I CANNOT WAIT!!! By then I will be 6 months since surgery, and it has been a road. I can't tell you how much I wish Covid would fuck right off and we can get back to even MORE normal! But step one is to get back to the office (when I can comfortably where a bra, lol), and I am ready for it!! 

Again, it is my #tribe that has made the last 6 months bearable. I can hear you. I can feel you. I appreciate you so so much!

Peace and love

Barb