The Start of Radiation

Last Monday I started radiation. A year ago that week I started chemotherapy and my grandfather passed away. I think its safe to say I am no longer a huge fan of this time of year ha.

In my last post I gave the update that there was some residual cancer showing in my scans and that I would need to have a consultation with a radiation oncologist. I had that consultation a month ago and it was determined that I would have 4 weeks of radiation. When I first met with Dr.Song, my radiation oncologist, they also brought up the possibility of a bone marrow transplant. Dr. Song and his resident said that radiation and the transplant were my two main options. They were going to present my case to the tumor board, apparently once a week all people that work in fields that deal with tumors get together and discuss cases to figure out the best plan of action. Dr. Song said they would talk about it then and make a decision.

This was the first time I had heard mention of a bone marrow transplant being a possibility and that made me quite anxious. If I did end up going that route they would take out my own bone marrow, harvest it, hit me with a major dose of chemo, and then put my bone marrow back in me. Not fun but still better than if I was needing someone else's bone marrow. Luckily they decided that for now radiation is the best plan of action. I will have radiation every work day for a little over 4 weeks, a total of 22 treatments. If for some reason the radiation does not work then the transplant will be our next step.

I did my own research on the side effects of radiation and after chemo it really doesnt sound that bad. It should make me really tired towards the end of treatments and due to where my tumor is I could get esophagus burning. It is also likely my skin will feel as if it has a sun burn in that area. Of course everyone is different so I could have the worst of these symptoms or none at all. So we will see.

Two weeks ago I had my appointment to get things set up for radiation. I googled all about radiation treatments as soon as they mentioned that as a possibility and I am very glad I did. I know doctors say dont google things, it will scare you, but I say google google google. If I had not done research on what I was going to go through I would have been 50 million times more scared and anxious. In my first appointment they did a CT scan, made my mask, and gave me tattoos.

For the whole process I laid down on a board like I do for all of the scans, however this time with my tumor area uncovered. Mine is right between my breasts so they placed a small towel over each breast and did their best to keep me covered up. They then fit me with my mask. When going through radiation you have to wear a mask that helps you stay still and in the same place each treatment. Im not sure what the mask is made of, it seems like a wax like material. They lay this netted sheet over you and mold it to your face and after a few minutes it hardens. They then clip it to the board on either side so you are locked in and can not move your face. I can get a little claustrophobic so this was not fun. After this initial time they cut out the eyes in order to help a little. I have put a pic below of a random person in the mask and then a pic of my mask that I use.

What it looks like on someone

My mask after my first treatment

It is hard to swallow while wearing the mask and you definitely can not move your head. You can still breath easily through your nose and even through your mouth some but of course your mind starts to freak out that you cant. They then started sending me through the scanner. They wanted to confirm where my tumor was so they could then give me tattoos to help them know the placement each time. I completely understand why all of this is necessary and am happy they take so many precautions to make sure they are going to give me treatment in the correct spot but it does make for a long process. During my initial set up and all of my treatments I have at least two radiologist technicians (I guess thats their title) in there with me. They all were very nice and continually asked if I was okay and narrated to me the whole time as to what they were doing and what was going on. That helps immensely. There were a couple of times I almost said something, that I needed to stop, and it was comforting to know they were there if it ever did become too much. Of course when it was time to actually do the scan they stood in another room behind glass, so they do not get exposed but they can still see me.

The CT scan sent the images to the computer which then sent it to this laser that was above the board I was laying on. The laser then marked my body as to where my tumor is. Now even though I do not like this experience it is really cool to see all of these machines doing this work, its just amazing. Im not sure what the laser marks looked like but the radiology technicians came out and marked me up with a sharpie. They then gave me tattoos in 4 different areas so they can line me up properly each time and know that I am always in the same position. The tattoos are real tattoos, done with a needle pen or whatever you call that tool, and ink. They look to be dark freckles or moles. I have two on my chest and one on each side. I have put pictures below of each.

This whole process took about 25 minutes. As I said there wasnt much to it physically but mentally it was hard. Its hard to explain what its like but just imagine being locked on a board by a face mask, unable to move, while also feeling slightly exposed. Its hard to distract yourself to whats happening and what you're going through. I would just count to ten in my head slowly or try to think of places I wanted to be like the beach or something. I was hoping after this initial appointment that my first treatment would be a lot easier, since I would already know how it was going to feel and what would happen, but it wasnt.

Like the initial set up the first treatment was very hard mentally. I met my technicians who will administer the treatments everyday for the month and one turned out to be a friend from college, so that was nice to see a familiar face! That has definitely been a great perk to going to VCU for all of this stuff, so many people I know work there. The first treatment was very similar to that initial set up. I laid on the board uncovered from the waist up except for towels and they placed the mask on me and locked me in. They then slid my body around to try and line me up with the lasers, exactly how I needed to be. They then marked my chest with crosses and put clear stickers on them so the marks wont rub off. They use these to ensure I am lined up each time. I have to keep them on through the entirety of my treatments so if you see the cross on my chest that's what that is.

This first treatment took longer than most of them will because they also needed to do X-rays. They took images to make sure I was lined up correctly and then they had the doctor approve them before starting treatment. So I laid on the board what I would guess was 25ish minutes while they did images. They use the same machine for images as they do for radiation. Its this huge thing that slowly rotates around you. So unlike the CT and PET scans you dont actually move, the machine moves. I have put images of it below. They take images above you and from below. During some of those points the machine is inches from your face and you can see your reflection. It is something else to look up and see yourself half naked laying on a board with a mask covering your face. Again I counted and thought of happy places. But as much as I tried the anxiety would rise up. When they took the images it made a loud buzz noise. At first I wasnt sure if that was them doing the treatment or what. I immediately thought my throat started to hurt and that I was already getting esophagus burning. Well I found out a few minutes later that they hadnt event started the treatment yet haha so obvi that was my mind playing tricks on me.

When they finished the images they told me that we were now starting treatment. That process took what seemed like maybe 5 minutes. So that was nice. The machine goes over you and then buzzzzz and then goes under you and then buzzzz and thats it. I had my eyes open the whole time and did not see or feel anything. So I am hoping my future appointments will be easy peazy and quick like that. I will have to get images once a week and then meet with Dr. Song once a week as well.

After that first appointment I was dreading doing this everyday for a month. Although the effects do not sound like they will be worse than chemo the actual experience of getting radiation was way worse for me at that point. I think chemo is more of a physical blahness where radiation is more mental.

I have now completed 7 treatments and will say it does get easier. The first two times were very nerveracking but I tried to remember how I felt after my first two chemo treatments. How even though it was miserable in the beginning I got used to it and after a few treatments it wasnt as nerve racking. I think that is happening with radiation too. It becomes easier to handle each time.

Now I come in every morning, change into my gown, and then wait to be called back. They come and get me and I lay on the board, get strapped in and zapped. The process takes about 15ish minutes normally, except the days when I also get images taken too, that adds on about 5 minutes. I am not as nervous or anxious about the process as I was in the beginning and am so happy for that. It makes the idea of doing this 15 more times bearable.

I have started to feel and see some of the effects of treatment though. After my third treatment my throat started to feel sore and my skin in the treatment area is getting darker. As of right now my throat just feels as if I have a cold but I am a little nervous for what is to come. The doctor said it will probably become hard to swallow without a lot of pain. There is medicine they will prescribe to help this but at this point I do not need it yet. So far my skin is not red yet and I am making sure to keep it moisturized, hopefully that will help. Last week I felt really tired and out of it but I think that was a combo of the effects of treatment as well as mental exhaustion and anxiety. Thankfully we had a lot of snow days so I was able to use last week to rest and get acquainted with my new schedule and treatments. This week I still feel tired but not overwhelmingly so. I am keeping my fingers crossed that as the days go on things stay the same and do not progress too much.

I will write more as we go along the process!! Hope everyone that has snow is enjoying it! As always thank you for your love, thoughts, and support!