Welcome to Life As A Cancer Survivor! Today I’m going to share with you my experience going through radiation therapy which was the first step in my treatment for colorectal cancer. For those of you that are new here, my name is Jelena and in May 2016 I was diagnosed with Stage 3 Colorectal Cancer. Ladies make sure that you stick around for the end of the video because I’ll share with you some very important information that I only found out by talking with others with my same diagnosis, but it’s really important for you to hear this information if you ever want to have sex again after treatment.
As a reminder, after multiple tests to figure out how advanced my 
cancer was we learned that it was Stage 3 Rectal Cancer and that the first step in my treatment was going to be 28 days of radiation therapy and oral chemotherapy. I’ll have the links to the Tests, Tests, Tests video and My Treatment Plan right up here you can click on that and I’ll also have it in the description below. You can also wait until the end of this video and I’ll have the links to both of those videos pop up and you can just click on them and watch them from right there.
To receive those 28 days of radiation treatment I would go to the hospital five days a week Monday through Friday to receive it, and I would also be taking my chemotherapy pills twice a day on those days. I’ll talk about just the radiation part in this video and my next video will address the oral chemotherapy part. But before I started radiation I had a couple of appointments to go to to get me prepped for it.
Tuesday, June 7th, 2016 was my first appointment with the radiation oncologist. We were there for over two hours! I went in and filled out paperwork, then the nurses took my vitals, and then the radiation oncologist came in to talk with us and do a physical exam. He checked my breathing, he felt my head and shoulders and neck, and then he did a physical exam of my rectum to check and see what the size of the 
tumor was, where exactly it was located so he knew he was working off of correct information. He said that the EUS or that rectal ultrasound measured the tumor ranging from four and a half centimeters in, to 15 centimeters in. For us Americans that means the tumor was over four inches long which is like the size of an apple! That sounded huge.
He then had John and I come back to his office so that he could discuss with us the radiation side effects and also go over the CT scans. I’m not a medical professional so I had no idea what I was looking at in those scans, even when he was trying to point out where the tumor was. Then he told us that this was a very straightforward cancer and there’s a very standard treatment plan that Stage Three patients follow for it. I asked him if I could get the best treatment here in town or if I should travel to another city to get better treatment because I have family all across the country so I could travel and they’re near a lot of excellent hospitals. He said that if he thought that I could get better treatment elsewhere he wouldn’t have any reservations recommending me to go somewhere else because he’s got radiation oncology friends all over the country that he knows but he said that I could get just as good of treatment here as I would get anywhere else. So that was pretty comforting to hear. He sent in an order for me to get an MRI so that the surgeon would have those images and would be able to better tell where everything is laid out once it came time for my surgery.
Then he explained that over the next few days I would come in for another CT scan and then I would come in for a virtual simulation of radiation treatment before I actually began. The next day I went in for that mapping CT scan to determine exactly what locations in my body needed treated. Based on that CT scan the radiation oncologist would take about two to three days to map out the treatment plan and then I would come in for that virtual simulation, also known as a V sim or a dry run, and they would make sure that the radiation was going to be hitting the exact right parts of my body before the actual radiation treatment began.
And sure enough three days later I was back at the office for my V sim. When I was called back from the first waiting room the nurses escorted me too the second waiting room where I would actually go to I was 
waiting for my radiation treatment every day. I even got my own special card with a barcode on it so I could beep past that first waiting area and go to the second one. And on the back of this I stuck a picture of Maelle so she could be with me for all of my treatments. On the way down to the room, they showed me the nurse’s station where they would be watching me from for my treatments. Obviously they weren’t allowed to be in the room with me, so there were monitors that had a direct feed of video into the radiation room so they could watch and make sure everything was going as planned in there and then it also had the CT scan of me and then just a couple of other monitors up there.
The room with the radiation machine and the machine itself were much bigger than I expected. The nurses helped me onto the table, then I had to pull my pants and underwear down to my knees, and they put a towel over my butt, and then they got me all positioned correctly on the table. Since I was face down on the table I never really got to see what exactly was going on, but the table itself moved up, and then it moved forward closer to the machine then an arm moved around me to take x-rays. One of the nurses comes back in, she draws an outline on my right thigh/butt area of the treatment area over there, then she leaves, more x-rays are done, then she comes back in and does an outline of the treatment area on my backside. They give me the option of just keeping the marked X’s with the little tape on them for five and a half weeks or they said I can make them permanent tattoos so I wouldn’t have to
worry about the tape falling off. I didn’t have to worry about the tape 
staying on and things getting erased so I just went for the permanent tattoo. They did it right there on the table they just came in with a needle of ink stuck the needle in and just injected the ink and it’s about the size of a freckle but visible enough as you can see.
After that dry run we went down to speak with a nurse about the radiation side effects and also to get my radiation schedule which I was put down on the calendar for 3:30 p.m. every day. We had been sent that 25-minute video on radiation therapy before going into that appointment so the nurse didn’t really go over anything that was earth-shattering. The one thing I did learn was that within the first few weeks the bleeding that I was having when I was on the toilet should stop. It was also casually mentioned that the radiation therapy had the potential to put me into menopause. Potential is an understatement! EVERY colorectal cancer survivor that I have talked with that’s comfortable speaking on this topic, the women have all been put into menopause and the men cannot have kids. If you’re even thinking about potentially having kids down the road stop that radiation freight train DO NOT start treatment until you have talked to a family planning doctor or a fertility doctor to discuss what your options are. John and I were not planning on having any more kids beyond Maelle, so the discussion stopped for us right there.
June 13 was day one of my treatment. Maelle, John, and my parents all came with me to my first radiation treatment. They all came back with me to see the machine and how it worked, snapped this beautiful 
picture of me, then they went back to the waiting room while I hopped up on the table for treatment. As I mentioned earlier, I had to lay face down for treatment and then I had to pull my pants and my underwear down to my knees. The nurses would hang a towel over my butt so it wasn’t hanging out the whole time, but then they’d tape my butt cheeks apart so that the radiation wouldn’t build up even more and cause worse burns in any folds back there.
Now back to that gorgeous picture of me once the actual radiation therapy is about to begin that table rises and slides closer to the machine, the machine moves into position, then buzzes for about 15 seconds. It does that in that position you see here in the picture, then it rotates and buzzes me on the left side, and then on the right side, then I’m done. Here’s a picture that highlights all the areas that we’re going 
to be treated with radiation. My appointments are scheduled for 15 minutes each day but most of that 15 minutes is spent getting me all perfectly lined up on the table so that they don’t accidentally zap the wrong parts of me during radiation.
Every Tuesday was doctor day, so I would meet with my radiation oncologist and talk about how I was handling treatment and discuss any side effects that I was experiencing. So first doctor day was only on day two of my treatment. He said he had looked at my MRI from the day before and the preliminary results showed that my tumor was actually 7 centimeters away from the anal verge and not four and a half so sphincter preservation had a much higher chance of happening, so that was great news. He still needed to go over the official results with the radiologist but he said that the test looked promising. Otherwise, that was all we really had to go over since it was only day 2 of treatment.
Later that day I thought it would be funny if I bought some washable markers and wrote something new on my butt every day. After I thought about it a little more and realized that was gonna be a lot of scrubbing on my butt which was probably gonna get raw from radiation after a while I decided it was probably better to just do it on Fridays. I obviously can’t show you the pictures of my butt with the writing on it from each week, but I can tell you what John wrote on it. Of course, he had the job of writing all the messages on my butt because you know how hard it is to write something legible on your own butt? Not easy.
The weekly surprises were:
-Cancer Killer
-This Stinks
-Danger Exhaust (with arrows on each cheek pointing to my crack)
-TGIF
-Kiss this sweet a$$ goodbye!
The Friday before the fourth of July John had left early to go to my sister’s wedding so he wasn’t there to write anything so Maelle filled in for him and put some patriotic temporary tattoos on my butt.
Three days into treatment and my insides were already in turmoil. After breakfast, I got a sudden onslaught of cramps and rushed to the bathroom. I tried pushing out what I thought was a bowel movement and I almost blacked out on the toilet. Thankfully I did not pass out and the pain subsided a bit so that I could go to the bathroom, but then I had to go out and just lay on the couch for a while because it was still pretty painful. I also felt really tired and was taking daily naps, which for me was really unusual because I am NOT a napper. Even when Maelle was a baby I would not nap. So the fact that I was napping daily meant that treatment was already taking a toll on me and causing fatigue.
After the first week of treatment was finished I thankfully hadn’t had any more episodes where I almost passed out on the toilet, but I was still passing blood with my gas and my stools. My insides just felt a little off, not enough to prevent me from eating and it wasn’t horribly painful at all yet. I lost two pounds in that first week though, so I tried harder to focus on making sure that I was eating while I still had a bit of an appetite.
Week 2 I started getting back pain and by the middle of the week it was
getting so bad it was waking me up in the middle of the night. I was also having bad cramping episodes that would just kind of lay me out on the couch for hours at a time. Week 2 was also when my appetite started to decrease. By the end of the week I had almost a constant feeling of needing to go to the bathroom all the time, but when I would go and try to push something out just blood would come out into the toilet. My pain would rotate through cramps, gas, feeling like I needed to go to the bathroom all the time, and just like my rectum felt sore all the time. The sore rectum was pretty much a constant but those others kind of rotated sometimes would last just for a few minutes other times up to an hour. They would happen often enough that I didn’t feel comfortable going out for a hike or being away from a bathroom for very long.
The pain level was kinda hovering at a 2 to a 3 on a scale from 1 to 10. One or two times though I would have some very brief intense stabbing pains that spiked probably at about a 6. I had some urgent bathroom visits too, where I had a sudden onslaught of cramps and I thought I was gonna crap my pants before I even made it to the bathroom but luckily I did make it and it was just a couple of times that that happened. Overall I was not happy with how I was feeling by the end of week 2 and was dreading another 4 weeks of treatment.
Week 3 my body either was getting used to treatment or I was just getting used to the turmoil that my insides were dealing with. I would go back and forth between having diarrhea – to being constipated and my rectum was sore feeling all the time. During my weekly appointment with the radiation oncologist, I discussed those things with him and he said that he could prescribe me a steroid suppository but I decided to wait another week before seeing if I really needed to have a steroid.
Throughout the rest of my treatment my insides were unsettled and the back pain and butt pain that I was experiencing just kept increasing as the days went by. I tried to keep running but I kept getting slower and 
slower and with the gas pains that were plaguing me and the blood that was passing with the gas, it made it really difficult to run. On my last radiation day, I got this cool certificate and I also got to ring the bell to signify that I was finished with radiation.
The taping of my butt cheeks must have really helped because by the end of the 28 days I had burns but they weren’t super severe. My insides though, were a different story. The burns inside my rectum felt like I had spikes in there, and even if I just walked it felt like those spikes were just stabbing the inside of me. I was prescribed SSD cream to put on the outside skin for the visible burns and I also used Dermaplast spray for instant pain relief. For the inside burning, I just used over-the-counter hemorrhoid suppositories. Even using all three of those combined I still spent a lot of time laying face down on the bed with my butt completely exposed because even clothing on it hurt too much.
If you’ve gone through radiation treatment for any type of cancer, let me know in the comments below what you used that helped relieve the burning from treatment. About two weeks after treatment finished was when I really felt like I turned a corner and started to feel better. The burns started to dissipate and that spiky feeling in my rectum had finally gone away. I learned that you definitely need to ask for that SSD cream as soon as you start experiencing burns because they’re just gonna get worse as you keep progressing through treatment and even after treatment is over they don’t disappear the next day. Also, that Dermaplast was awesome because it was instant cooling pain relief and you just sprayed it on so you didn’t have to rub any of the tender burned areas.
And that important information for women that I had to hear about from other survivors in order to even know to ask my radiation oncologist? Turns out when you’re receiving radiation treatment it’s also hitting reproductive parts including your vagina. Scar tissue can form and cause the tissue to be less elastic, shrink, and narrow. In order to mitigate the long-term effects from that you need to either use a vaginal dilator or have sexual intercourse at least twice a week for the rest of your life. No one at the radiation oncologist’s office warned me about this at all, but when I called the office to ask for the dilators they were like, oh yeah you need to use these twice a week for the rest of your life. They gave me three sizes so that I could start with a small one and work my way up because damage had been done from radiation so you have to work your way up. They were painful to use at the beginning, and I would bleed every time that I used them, but the more I used them the more the tissue stretched out. So PLEASE PLEASE be sure to ask your doctor about this if you undergo radiation treatment. I was really nervous and a bit afraid to ask the doctor about it, but this is a life-altering thing that you’re gonna have to deal with if you do not ask about it.
Next week is Thanksgiving, so I’m gonna be taking that week off. So tune in in two weeks to hear about the side effects that piled up on top of these from the oral chemotherapy that I was taking at the same time. As promised, here’s the Test video and My Treatment Plan video. Just click on either of those to watch them and if you liked this video please be sure to hit the like button so that I know you’re enjoying what I’m talking about here. And if you haven’t subscribed yet, you can click on my face right over here and that’ll get you subscribed. Thank you for watching and I’ll see you in two weeks!
*This video was originally published on November 20, 2019
*Link to My Cancer Diagnosis, Tests, Tests, Tests, and My Treatment Plan blog posts