Figuring Out My Ileostomy

Posted on June 23, 2020November 22, 2020 by Jelena

Week 1 with an Ileostomy: Eating, Emptying, and More

Welcome to Life as a Cancer Survivor. Jelena here, and today I’m gonna talk to you about what it’s like during that first week having an ileostomy. I had mine for seven and a half months while my bowels recovered from having a Lower Anterior Resection, which is where
they took out 12 inches of my colon/rectum and also 17 lymph nodes. I
had that surgery in October of 2016 which was five months after I was
diagnosed with Stage 3 Rectal Cancer or for those of you in Canada, Australia, or the UK, it’s Stage 3 Bowel Cancer. I have an exciting announcement to make at the end of the video so make sure that you stay tuned.

First, let me briefly describe what an ileostomy is for those of you that might be unfamiliar. It’s where they take the end of your small intestine and pull it out of your abdominal wall. We’ll say this is your small intestine, so they cut a slit in it, and then your waste will come out of your slit out of the slit and you wear a bag over your abdomen to catch that waste. So it comes out of there instead of continuing through your digestive system and coming out of your butt. If you need a more in-depth explanation, I did a video on what the ileostomy, the colostomy, and urostomies are, so click up here, I’ve got that link so you can familiarize yourself a little bit more with those. If you click on that, make sure that you come back over here and watch this video when you’re all done.

Now that you understand a little bit better what ileostomy is I’ll beginmy story with when I woke up in the hospital with the bag on. So when I woke up and I looked and I saw the bag on my stomach it really started sinking in that that was gonna be a part of me for the next few months. The bag that had been placed on me was clear on the outside so you could see the output that was coming out and also the stoma. Mine it was still pretty swollen and red so it kinda looked like a big cherry to me. I’d heard from others that some people will name their stoma to kind of make it seem a little less scary, kind of gives it a little bit of a lighter side that you can laugh at, and also when it starts having a mind of its own and acting up you’ve got a name that you can call it. So since I thought it looked like a huge cherry I decided to name mine Cherries Jubilee or Juby for short. Let me know in the poll up here if you had or have a stoma, did you name it? And if you’re feeling brave go on in the comments below and let us know what you did name it.

Once I started getting some output I asked the nurse what I should do as it started filling up. So she said to use the call button on my remote and either the nurse or the CNA which is the Certified Nursing Assistant, would come down and they would empty it for me because they were keeping track of the output so they would actually empty it into a plastic
container that had measurements on it so that they could note how much output I had. For the first couple of days, the output was just liquid and I was really glad that I did not have to deal with it ’cause it waspretty gross. The day came that I was gonna be discharged from the hospital and I had to do a bag change before I left. I was pretty nervous about doing it. I wasn’t sure how I was gonna react to seeing the stoma all by itself without the bag on it. I wasn’t even exactly sure how the small intestine was coming out of me, so I didn’t know if I was even gonna be able to look at it and figure out what exactly was going on without being completely grossed out, but I was about to find out shortly.

Once the wound care nurse came up to my room to help me with my bag change, she kind of settled my fears a little bit by showing me some
tips like taking a washcloth and tucking it in like a bib but in your underwear so that any output that may leak out you’ve got that washcloth there handy to wipe up any spills. She scheduled her visitwith me for about two hours after breakfast in hopes that my stoma would be pretty quiet and there wouldn’t be a whole lot of output when we were doing the change. She ended up pretty much doing most of the bag change herself as I kind of assisted a little and just kind of watched, tried to take notes in my head but it was pretty overwhelming. She reassured me though that I would have a home health nurse that would come visit me for two weeks and that nurse would help me at home with the changes, so if I didn’t remember everything, that nurse at my house would be able to help me remember those and help me get kind of a rhythm down. Then she gave me some supplies to take home with me to keep me held over for a few weeks while I requested samples from the three major ostomy supply companies Convatec, Hollister, and Coloplast.
You can’t really ask for samples ahead of time because you don’t know what the size of your stoma is gonna be, and the size of your stoma is gonna determine what size barrier you’re gonna need which this is the part that sticks on to you so your stoma sticks out the hole. You can cut them, but some are larger than others and then depending on what size of the barrier you get the bags that fit onto it only fit on certain sized barriers so you can’t even order half of it ahead of time because you got to know what size the stoma is. And even once you do order stuff, don’t order a ton initially because your stoma is still gonna change sizes for at least that first month that you’re at home.

Once I got home I was really nervous about eating. The nurses at the hospital had really emphasized that I needed to chew VERY thoroughly all of the food that I was eating once I got home and that I needed to avoid any high-fiber foods for at least six weeks after surgery because those foods take a lot more work to digest and my digestive system had already been traumatized enough from surgery it didn’t need to be
overworked by trying to digest those foods as well. So, more specifically those high-fiber foods that I was supposed to avoid eating were: whole-wheat breads, brown rice, raw fruits and vegetables, and dried fruit.

I was also given a list of foods that I was supposed to avoid for the first six weeks after surgery to help avoid or decrease the chance of me getting an intestinal blockage. Those foods are:

vegetable and fruit skins
apples, dried fruit, grapes, coconut, and pineapple
celery, corn, cucumber, green peppers, peas, and bean sprouts
salad greens, cabbage, coleslaw, and spinach
nuts
casings on sausage and tough, fibrous meats like steaks

I passed these lists on to my parents because they were gonna be making meals for us for the first bit after I got home from surgery. So the first meal that they prepared for us for that dinner was a creamy potato soup, with the potatoes peeled. It took me forever to eat because I chewed so thoroughly I probably spent a minute on each bite before I swallowed it. Luckily I guess I wasn’t eating a whole lot so even though I was taking me forever to eat each bite I still finished around the same time as everybody else because they were eating a little bit more than I was.

Once I got home I had to figure out how I was gonna empty my ostomy bag. At the hospital, they just emptied it into a plastic measuring container while I was still sitting at the hospital bed. At home, I would be
emptying it while I was on the toilet. So there are a couple of different methods that you can choose from for emptying your bag:

Forward Method – you sit on the toilet like you normally would and empty your bag.

The Backward Method – is where you sit on the toilet facing the tank and empty.

The Kneeling Method – is when you kneel on the floor either in front or to the side of the toilet and empty.

You can also put a few squares of toilet paper on top of the water in the bowl to help try and prevent some splashage while you’re emptying the bag. Then after you’ve emptied the bag I would take a little toilet paper and I would wipe the outside and the inside of the end a little bit so that when I folded it up there wasn’t any waste that was squishing out of it then I would fold it up and be on my way.

I experimented with using my old peri bottle, which was a squirt bottle that you get after you’ve given birth to kind of hose yourself off after you’ve used the bathroom. So I had that squirty bottle and I would try
rinsing out the bag after emptying it but the water would feel really cold if you didn’t fill it up with warm water (right away) right before you went. And then it’s just swirling around poop all over and it was really hard to get it completely clean and within like five minutes it’s dirty again. So it wasn’t really worth it, and then I also read that it can loosen up some of the adhesive and cause your barrier to break down faster so that was kind of the final straw for me and I decided trying to rinse out the bag was not worth it.

I preferred the forward method because I would always pee when I emptied my bag and it was just easier to empty it in the position that I was already in on the toilet. I was told to never let the waste get more than about halfway up in your ostomy bag before you empty it, I believe for two reasons. One is because you don’t want that waste getting backed up so high that it’s resting on your stoma. Especially with the ileostomy because the waste coming out of your ileostomy is more acidic than regular stool so it could cause burns, especially around where the barrier is surrounding your stoma and it could break that down much quicker when there’s stool just resting on it. Also, when it gets more than half-full that bag gets pretty heavy, and even if it’s not peeling off, having that stress is gonna cause the adhesive on the barrier to break down faster.

I tried to drink a lot of water while I had my ileostomy because your large intestine is what is absorbing most of the liquid for your body, and since that wasn’t in use and it was coming out of the small intestine I needed to drink more water to make sure that I didn’t get dehydrated. So since I was drinking more water I was peeing a lot more which gave me a lot of opportunities to empty that bag.

Two days after I got home from the hospital I had my first visit from the home health nurse and did my first bag change at home. Getting the bag off was a piece of cake. Getting it back on was a different story. My tummy was still really sore and my muscles were a wreck from surgery. When you’re trying to click the bag onto the barrier you need some kind of resistance on the barrier side to allow that click to happen, but my
muscles were shot and I couldn’t flex my muscles at all to give any kind of resistance. I kept trying and trying and trying to get it to click but I couldn’t get it to click. In between attempts, poop was coming out so I had to keep cleaning it up. After like five minutes of struggling I still hadn’t got it on so the nurse decided to try and do it. The nurse tried to get that bag to click on too and she even struggled. She worked up a sweat trying to get it on but finally, she got it on. It was a disaster. I was really frustrated once the visit was over and really fearful for how I was ever gonna change my bag on my own.

The next visit wasn’t a whole lot better. We tried connecting the barrier and the bag together first before putting it on me, but my stoma wasn’t perfectly round so it’s really hard to get it perfectly lined up. So we got it on but it wasn’t perfect, so a little bit of my skin was showing and the part that was showing ended up getting burned by the output.

The first week with an ileostomy was a struggle. I even knew goinginto surgery that I was gonna get one and it was still hard for me. Beyond getting marked for the stoma and just seeing a basic demonstration on a dummy of how to put a bag on, I didn’t really know what I was in store for. Changing that bag was SO hard. I was so sore too, that all I could wear were sweat pants, really loose-fitting elastic waist banded pants, and flowy shirts.

One more thing that I want to share with you all is that I’m launching website, Life as a Cancer Survivor! Over there I will have the subtitles to all of my YouTube videos so that you can go back and reference them in print. I don’t have all of them up quite yet but they should be finished within the next few weeks. I’ll also have a list of my favorite resources and then I’ll also have a timeline of my diagnosis and treatment for you to look at. If there’s anything else that you would like to hear from me
or see on the website, just let me know. Drop me a line in the comments and I’ll look into getting that added.

There is plenty more that I want to share with you about what it’s like living with an ileostomy and I couldn’t fit it all in this video, so make sure that you’re subscribed and that you’ve clicked on the bell so you’re notified when all of my future videos are posted. My channel is growing and it’s thanks to the love that each of you are giving to this channel.
Thank you so much for watching and I’ll see you again soon.

*This video was originally published on June 19, 2020

CT Scan Time!

Posted on June 20, 2020November 22, 2020 by Jelena

Life Update: Getting a CT Scan

Hi guys! I wanted to do a vlog for this post, so here I am in my car because it is Tuesday, December 3rd. I have my next follow-up appointment with my oncologist next Friday, December 13th. So I am going in for follow-up appointments every four months, it’s been over two and a half years that I have been cancer-free and I’m going in once a year now for CT scans. So when I went in in August I was all good and my oncologist said okay we’ll do your CT scan your annual CT scan coming up for your December appointment. So I was like, okay.

So usually I get a call like two weeks or so ahead of time to at least one more like a month ahead to schedule the CT scan and then I know to make it in like a week before that CT scan to get my blood drawn because they need to like, check my kidney levels I believe to make sure that they can handle the stress of the contrast that they inject during the CT scan. So I didn’t get a call, last week was Thanksgiving and we were out of town so I forgot and didn’t call and forgot yesterday, so it’s Tuesday I called the office, the oncologist’s office, and was like “Um, I need to schedule my CT scan you guys haven’t called me yet,” and they had no record of me needing one. I was like, “Dr. Marcus said that I needed one the next time I saw him.” So they looked and then they change their story and said that “Oh, we’ve been trying to call you,” but they haven’t. I’ve gotten no calls and my phone number has not changed at all since I started seeing them so I don’t know if they actually were calling or what. So they said, “Okay, we’re sending it into the insurance company to get approved and if you don’t hear from them by Friday we will have you you can call the office and see if you can get scheduled.”

Okay, so I figured it’s time to go in at least and get my blood drawn so I’m here in the parking lot. I go to just the office where my primary care doctor is because they have a lab in there and it’s only ten minutes from our house as opposed to like 25 minutes to get to the hospital where the Cancer Center is. So I’m here I’m gonna go in and see if they actually even have my blood draw request in or if they’re gonna have to call the oncologists office for that too. But if they do they the oncologist’s office is really fast about responding to that and I should still be able to get the blood drawn so I’ll be back shortly and let you know how that went.

Hi guys, I’m back. Hey, called it! They didn’t have the request for my blood draw so the lady was new not the usual one, so she didn’t call the oncologist office for me I had to call him, and then she just gave me the fax number. She was not very nice. So I called the oncologist’s office and so they were like okay we’ll send the request up to the lab and then they will send it in this lab so uh it took like 15 minutes or so 20 minutes, I don’t know it’s been about 40 minutes since I left the car and went inside.

So they sent over the results once I heard the fax come in within five minutes they had entered in the info and I was called back to get my blood drawn. So blood has been drawn. They took out three vials. One was a small one about yea big. The other two were probably yea big and about this big around yeah. I don’t know what was in the bottom of those two but like before they even put my blood in there was something that looked kind of like Vaseline or wax hanging out at thebottom so I don’t know what any of those mean but three vials for a checkup and to check all of whatever they check which includes my CEA and then to make sure the kidney levels are fine for the CT scan. So I will check back in with you guys when it’s CT scan time. Hopefully, they will let me come in and at least take pictures if not do a video of me doing the CT scan but I don’t know if that’s gonna happen or not because at the blood draw site I’ve tried taking pictures before while I was getting the blood drawn and they said if you take a picture don’t get anybody else in it except for yourself and don’t post where you took it. So my daughter took the pictures for me the one time. So I’ll check back in with you guys when I’m getting my CT scan hopefully. Alright, talk to you soon.

So I mentioned that I had my blood drawn to check my CEA levels, but what exactly is a CEA? Well, it is a tumor marker and it’s actually a protein that’s in your blood. CEA it stands for and I’m gonna read it carcinoembryonic antigen. So it checks for that level in your blood and that protein it elevates when there’s tumor activity in people with certain types of cancers. So colorectal cancer is one of those where the CEA, in most people, it’s a good indicator as to whether or not there’s tumor activity inside of you. So for a healthy person, the level should be under 2.5 if you’re a smoker it should be under 5. Mine for the first two years I was tested after treatment it was less than 0.5 then it kind of started creeping up a little bit it went to 0.6 and then 0.7 but it’s not always a good indicator so that’s why the CT scan is also necessary. They spread them out as you from finishing treatment so now I’m just going in once a year.

Hi guys I’m back! I hadn’t heard from the CT office about scheduling my CT scan. So it’s Friday, so I called them, and they were like ope, yeah let’s get you scheduled, and they actually had an opening on Monday, 8:15a.m. So I was like, “Yeah, give me that appointment!” So that should be plenty of time for them to take the images and them to get to the oncologist for my appointment on Friday a week from today.

So this is a new place that I’m getting the images done. This place I have to do the barium smoothies. I have two of these fantastic things 450 milliliters each. So I have to drink one at 6:15 in the morning and then the other one at 7:15 in the morning before the 8:15 a.m. CT scan. From what I can tell because I’ve only had the berry one and it had a picture of berries on it but this one just has a picture of your digestive system so I hope it’s not digestive system flavored. But when I looked at the ingredients it has artificial orange and vanilla flavor so I’m guessing it tastes like a medical creamsicle I’m guessing. So I’ll drink these on Monday and I will check back in on Monday while I’m drinking these to let you know how they are.

Good morning. It’s taken me like four tries to get this down cause, I’m atthe skating rink. And, there’s loud music so it’s hard to get good video anywhere but here we are. Maybe this one will be loud enough. I am, drinking my smoothie. It’s more Orange than vanilla. Not tasting the vanilla.

Good morning. The music is off for a minute, so I’m gonna hop on and tell you that part of getting ready for the CT scan is that you’re supposed to wear stuff that doesn’t have metal on it. So I am. . . in yoga pants, comfy shirt, and then women you’re supposed to wear a sports bra no underwires otherwise you get to change into a hospital gown.

So it is about time for me to grab smoothie number 2 because it is 7:14. Those things, ok, let me pull number two out here for ya. I had to bring them to the rink. Number two, and when you open it up it has one of those fun seals. You’re supposed to, um, lift it. Open it. Except I can’t lift it open. And since I am not at home I just used a good ol’ key to stab it open so I can stick the straw in, so bottoms up for number two. 7:15 now. Time to get started on numero dos. Within a half-hour gotta drink it all. My tummy, it’s a little bit not happy. Not too bad but, it feels, I had to go down and go to the bathroom.

Time for smoothie number two. About two-thirds of the way through it. My tummy’s a little extra gurgly but otherwise, it’s handling it okay. Here we go.

Whew! Okay, so that was a rough morning. Uh, let’s see here so I last left I think when I was finishing up the final smoothie. My insides were super gurgly and after a little bit then I really felt the urgency to need to go to the bathroom. Uh, but I had to drop my daughter off and then head straight to the office so I had to hold it for a little bit.

As soon as I got to the imaging office though I ran to the bathroom and it was basically if you’ve been through the colonoscopy prep that’s kind of what it was like on the toilet there for about ten minutes which I was really surprised with I did not have that problem the very first time that I did the CT scan with the barium smoothies but my digestive system is a little different now than it was that very first time when I did it for my diagnosis. So lesson learned I need to make sure that I get in at the Cancer Center and not any different office because that the Cancer Center they don’t require the barium smoothies.

So I wasn’t able to take any pictures or video of the actual scan but here’s a picture of what the machine looked like it’s a little different from the one that I usually get imaged by at the Cancer Center. Here’s a picture of me at the Cancer Center with the CT machine that they use. So as you can see they’re a little bit different. We’ll go back to the one that I was imaged by today. I got an IV in and then the table rose and went into the machine up to about my pelvis level and so it took me out and then back in and then out either two or three times I don’t remember already.

So then after those two or three sets of images it rolls back out and then there’s this fancy pump which they have attached to the IV and the pump first pushes saline in because the tech isn’t in the room she’s outside so it pushes the saline in and then and the other barrel it pushes the contrast in. And then this time the contrast it started I felt it in my throat because I had my arms up above my head but they were at a bit of an elevation because there was a pillow back there so I think even though the contrast went into my arm and the arm would have been the closest I think it fell and like gravity took it to my throat first and so then the machine, the table, starts rolling into the machine again and right as the machine was saying to take a deep breath and hold your breath that’s when the warm feeling made it down to my crotch and it feels like you’ve peed your pants and then after that then I felt it warming up my, mostly just my hands, I didn’t feel it in the rest of my arm so that was a little different from usual. But I had to hold my breath for all of those scans, forgot to mention that, but I mean the machine tells you when you have to hold your breath and when you can breathe. This one didn’t count it down like the machine at the Cancer Center so I just had to hold it, but none of them, I had to hold my breath for more than 10 seconds or so. Then after doing going sliding the table in and out like another three times or so then I was all done. So she disconnected my IV and I could come home.

And so I got home and I purged some more in the bathroom. But I wasn’t hungry at all, all morning until like one o’clock and I finally had lunch. I still it’s like five o’clock now and I still feel a little unsettled. It’s not gurgly but I feel like at any time I could maybe go back into an episode of diarrhea. So I did eat a normal lunch. You are supposed todrink a lot of water after going through and doing the CT scan because of all that barium and then the contrast that they put into you they want you to drink a lot of water to flush all that out so I have not been very good about that today so this is my reminder to myself to start drinking more water. She said today and even the next day so tomorrow I should be drinking a lot of water too.

So that was the story of going through the CT scan now I wait. My appointment with my oncologist is on Friday today’s Monday and the tech said within about three days they should have the results so I was like okay that seems like a long time but that’ll still be in plenty of time for my oncologist to receive the results and go over them with me on Friday. So that’s what having a CT scan is like, at least with the barium prep so I hope that was informative to you guys and you learned a little something.

I’ve put in a poll up here. Let me know if you’ve done a CT scan before did you have some horrible diarrhea after doing those barium smoothies? I’d love to know how many of you have experienced that because I never did before and I haven’t heard anybody mention it before but it’s not really something you usually discuss so you can tell me anonymously in the poll I won’t know who voted which way I’ll just know that people have voted.

So next week I will hopefully in an exciting way share with you what I eat throughout the week because I get a lot of questions as someone that’s had a temporary ileostomy that was reversed what I eat and what I do to keep the toilet from ruling my life.

Hello. I’m here for one final wrap-up of all the CT scan craziness cuz I can’t just leave you hanging after I went in for it and not let you knowwhat the results were like. So um, well I’ve got a celebratory coffee here because CT scans came out clear no signs of any tumor/cancer activity at all. My CEA results they came in at a 0.6 so it went down a tenth of a point from the last time so happy to hear that. He said my white blood cell counts are still at 4.1 this past time which the normal range for a healthy adult is anywhere from four to eleven so it’s within the range but really down at the bottom so now I wait another four months till I go back to see my oncologist again. That time when I go in another four months I’ll just do the blood draw I won’t have to do a CT scan.

If you’re new here and need to catch up on some of my older videos I’ve got the playlist up here on My Beginning of My Cancer Journey so you can go through everything from my diagnosis story through tests and all of that and also you can click on my head down there to subscribe so you’ll be notified when all of my videos are uploaded every week. And if you liked this video I’d love it if you gave me a thumbs up or a like over here. Thanks for watching and I’ll see you next week.

*This video was originally published on December 18, 2019.

What is an Ostomy?

Posted on June 19, 2020October 13, 2020 by Jelena

What is an Ostomy? | Explaining an Ileostomy, Colostomy, and Urostomy

I’ve been talking a lot about ostomies, more specifically my own ileostomy lately, but what in the world are they? Well, it’s time for that video where I explain to you what those ostomies are. If you don’t remember me talking about that you must be new here so welcome to Life as a Cancer Survivor. My name is Jelena and in May of 2016, I was diagnosed with Stage 3 Rectal Cancer. This channel, I created, to give people insight as to what life is like once you hear those words, “you have cancer.” Make sure that if you aren’t subscribed to click the subscribe button right below the video here or in the description below I’ve got the link as well so that you’ll never miss any of my latest videos.

First up let me show you what a picture of the digestive system looks like so here’s this I’ll come back to it here in a moment but this graphic it is from this latest brochure, “Your Screening Guide to Colorectal Cancer” put out by the organization Fight Colorectal Cancer. So let me get back to this graphic so here’s a close up once again this part here this is your large intestine also known as your colon. At the end of the colon that part is called the rectum. At the other end your appendix sticks down there and this squiggly part is your small intestine there’s a lot more of it this is just the last little bit of it this last section of the small intestine it is called the ileum and remember that because I will talk about the ileum again here just in a moment.

Now time to talk about ileostomies. This is the kind of ostomy that I had and it’s the most common type that rectal cancer patients receive if they have surgery as part of their treatment plan. It is named an ileostomy after the ileum which is that last section of the small intestine that I just mentioned that connects to your large intestine or to your colon. There are two different types of ileostomies a loop and a terminal. I had a loop ileostomy which I will use my hand and this hose to demonstrate. My hand will be my abdomen to this is your small intestine. So they cut a slit in your abdomen wall and they pull up a section of your small intestine and cut a slit in it so you see there’s a slit there and they peel that back a little bit or roll it back so it’s actually the inside of your small intestine that you see sticking out. And they sew it into place and this part sticking out is called your stoma.

It’s still connected to the rest of your digestive system so a little bit of waste can still come out you still produce mucus and your large intestine that you will occasionally pass but it’s not a daily occurrence. There are no nerve endings in the stoma so it doesn’t hurt when you touch it but there also are no nerve endings there so you can’t control your bowel movements at all it’s just whenever the food is passing through it comes out.

So you’ve seen what it looks like this crude model of what one looks like but let me show you a few pictures of what mine looked like. I warn you this first one may be a little gross because it shows the stoma it’s got stitches and staples so I will let you know when that picture is gone or if you don’t want to watch any of them I’ll let you know when we’re moving on to the next thing so just close your eyes but listen. So here’s the picture the first time that I saw my stoma in the hospital for my first bag change. You can see the little stitches around where the intestine attaches to my abdomen wall and then they had to make the huge incision to take everything out and stapled it shut.

This next picture is a couple of weeks later after I got the staples out my stomach is not swollen from the surgery but you can still see some of the stitches around the stoma and it’s kind of shrank down a little bit, but still um still a decent size.

Since everything is coming out your stoma there that includes gas so that’s stoma does fart and you eat something that gives you a lot of gas at night you might wake up with a balloon sticking off of your tummy like this.

This is what my stoma looked like with the barrier on it which I will show you a better picture of what the barriers looked like in a moment but this is how mine looked with a barrier. As a souvenir, I saved one set of bags or the bag and barrier. So the barrier is the part that sticks on to you I used a two-piece system so there’s the barrier and the bag. So this is what stuck to me.

I used the Coloplast brand and I would have to cut the exact size of my stoma on the back here using some special scissors that I got and then this would stick to me. Of course, it’s down on the abdomen not up here on my chest but I also used a convex barrier which I’m not sure if you can see it very well here but it sticks out a little, it pushes down on your stomach to make the stoma push out a little bit more to make sure none of the waste leaks. So with this one, it actually, here’s the bag and here’s what the bag looks like. So this bag you just peel a sticker off and stick it onto here and there’s your system this folds up and you’ve got the velcro to fold it up so this is what my system looked like on me.

The only difference between the terminal and the loop ileostomy the loop they’ve got the slit cut like I had mentioned the terminal ileostomy, they cut it completely so you’ve got two halves. So there’s just the one end sticking out of your abdomen and then they roll the sides down and sew it in the same way as the other one. So you still have this other bit of your small intestine hanging out in there they’ll sew it to your abdomen wall just so it doesn’t like drift away or anything. This kind can still be reversed but it’s a little more difficult so typically if doctors know that they want to be able to reverse the ileostomy at some point in the future they’ll give you a loop one instead of the terminal one.

Since I personally didn’t have a colostomy, I asked my Instagram friends if any of them that had a colostomy would be interested in talking about their’s with me. Shiray volunteered right away and was more than willing to get on Skype and talk with me and share with you all about what her colostomy is like. She even volunteered to have her mother record a bag change so that we could witness that as well. She was diagnosed at the age of 28 with Stage 3 Rectal Cancer in August of 2016 and after treatment, she was considered NED or having no evidence of disease. However, this past January in 2019 a scan indicated that the cancer had returned and she was considered stage four. After an exhausting year of surgeries and treatment, she currently has no evidence of disease again, yay!! This is my interview with Shiray, and she has a colostomy right now.

(Jelena) So can you start out by giving us a little background info just about your cancer story?

(Shiray) Sure, um, so I was originally diagnosed in August of 2016 with stage 3 Rectal Cancer. Um, last year we found out that I was actually restaged to Stage 4 I had some lung mets and liver mets, and so we’ve been spending the last year dealing with that. I got my colostomy bag in between the two stages/chapters.

(Jelena) So then you initially got a loop colostomy right?

(Shiray) I did.

(Jelena) So can you explain to those of us that are unsure about what exactly that is what exactly it is and why that was the right choice for you at the time?

(Shiray) Yeah, so I had kind of an interesting situation. When I first met with my surgeon he told me that I had two options, I had a loop colostomy that I could do or an end colostomy. So my GI and my surgeon were both on the same page that they wanted to try the loop first because it will be easier to reconnect in the future.

(Jelena) Okay.

(Shiray) They were looking forward they really thought that I would only have the bag for like six months, like just enough time to heal, and then I could be reconnected. Well, what ended up happening is during my surgery it started out laparoscopically, and he set me up with a loop colostomy. And so what that is is that they take your colon and they make a slice through it and they bring both ends of that slice up to the surface. And so you end up having like a figure eight or like two holes.

(Jelena) Okay.

(Shiray) And so one end of the intestine comes from your small intestine up to the stoma and then from the stoma down to your rectum is the second portion of it. So what that would mean is that most of my stool would come out of the stoma and go into the bag but since I had that other opening there was a chance that stool could go through that other opening and I would still have regular bowel movements. I was nervous about that because of the pain that I had, but they both agreed so I thought we’ll try it.

And so, during the surgery, while he was finishing up, he was actually leaving the room and the nurse said you need to come back. The loop colostomy kept like falling in through the skin so it wouldn’t stay up on top like it’s supposed to. So he made the decision at that point to open me up and change it to an end colostomy.

(Jelena) Okay.

(Shiray) I never actually lived with the loop but just for a little while. And then an end colostomy is just from your small intestine up to the stoma it’s just one hole the other
section I still have in my body it’s stitched to my abdominal wall. So they can still reconnect me but this is normally used for people who have a permanent colostomy because that other section is pulled out and removed so I still have it in in me.

(Jelena) Okay so that’s what the end colostomy is and that’s what you ultimately ended up with after your surgery.

(Shiray) Yes. People think I’m crazy when I say this, but this is the most convenient thing in the world. I don’t have to run the bathrooms, I don’t have to constantly know where a bathroom is located, I just do what I need to do and we move on.

(Jelena) Yeah. Can you show us what kind of appliances do you use to contain your waste?

(Shiray) Yes, I use a two-piece system from Hollister. It’s a drainable pouch. Okay, so I use this it’s called a flange and you can see it’s got a little bit of a convex there and so what it does is it pushes my stoma out a little further so that the stool actually comes out where it’s supposed to. And then I connect my pouch to it with this little like grommet type thing. They go together and then this is a drainable pouch too so I don’t have to change the whole system I can either take just the bag off and throw it away and put a new one on, I can drain it, or I can change everything.

(Jelena) Okay, so how often do you typically drain it, change the bag, change the whole thing?

(Shiray) So on a normal day, I drain it probably three times. For the most part, I have pretty um oh what’s the word my chemo brain just kicked in,

(Jelena) Like predictable?

(Shiray) Predictable! Thank you. I have pretty predictable output. Typically I will have
a bowel movement like sometime around like 30 minutes after I eat. So I know like I’ve
got usually about an hour afterward I can go and change it and then move on with my day so typically about three times a day.

(Jelena) Okay so you empty it three times a day how often do you change the bag part?

(Shiray) So the bag itself I change it about midweek so I can keep the flange on for a week. It stays on pretty well unless I’ve got like a lot of liquid output that would break down this section I keep it on for a while. The bag though I don’t like the smell after two to three days I changed the bag every two to three days.

(Jelena) Okay, and the bag just clips right off right?

(Shiray) It just pops right off and they come together with this little like grommet and so you can just pull it with one of these tabs. And it just disconnects and I can pop a new one on.

(Jelena) All right. So you mentioned it’s usually like a half-hour after you eat is usually when the output starts and then is it like with a regular human that goes to the bathroom on the toilet like it just comes and then you’re done and it’s quiet for hours until you eat again?

(Shiray) I wouldn’t say that it’s quiet at all. But it is normal in like the output is the same texture as like, a normal bowel movement would be. So since it’s a colostomy I believe ileostomies are more liquid,

(Jelena) Yes,

(Shiray) A colostomy, is just a normal stool that comes out and so it really depends on what I eat and some stuff that you’d have to worry about when you don’t have a colostomy bag. It is really loud though and so that’s the thing that I think I underestimated. I think that I believed that I could control that at some point you know you can hold in farts and gas you can’t do that with a colostomy it comes out when it wants to it makes whatever noise it wants to and you just have to get used to it.

(Jelena) Yes. So you have no feeling when it’s coming out right?

(Shiray) None.

(Jelena) So you have no idea and you can’t like hold it.

(Shiray) No, and the only time I can feel something is if this lifts off of my skin. I can feel it then because I can feel it being pushed out so I know it’s something like I know I’m about to have a leak or something’s happening but most of the time I have no clue it’s coming.

(Jelena) Okay. Are there other things that you want to mention about it?

(Shiray) Yes! I was really worried. I know initially, I said I didn’t want to have a bag like when I woke up from surgery I was like “yay!” I realized that I can do so much more with a bag than I was able to do before I had the bag because I ended up, um you know before like I said I was homebound, I couldn’t leave my house, if I did leave I had to know where a bathroom was or have a change of clothes. With the bag I’ve been able to lift weights, I can swim, I can still be a normal functioning 28-year-old human, 29-year-old human.

It’s, I think it’s important that people understand that this doesn’t limit you in any way. You can limit yourself and you have to be more cautious about it. Like when I was lifting I had to work with a trainer who taught me the right form and she really made sure that my core was strong so that when I did do those heavy lifts it’s not like I was putting myself in danger. You just have to be smart about it but you can do anything with it.

(Jelena) Uh-huh. Uh, so let’s see, so how long have you had the colostomy now?

(Shiray) So I’ve had it a little over three years.

(Jelena) Okay, so you’ve had it for quite a while.

(Shiray) I have.

Shiray had so many great things to share with me that I couldn’t fit it all in this video, so stay tuned next week to hear even more from her and to see how she changes her colostomy bag.

Then last but not least is a urostomy which allows urine to exit the body through a stoma.
This one is the least common of the three ostomies that colorectal cancer patients receive and actually I didn’t know how the stoma was even formed until I did some research for this video. There are multiple techniques used to create a urostomy but I’ll just talk about the most common one which is the one that has the highest patient satisfaction rate and the lowest complication rate and that one is called the ileal conduit. urostomy bag

So for this type of urostomy they actually use the small intestine. So back to my tube here let’s say it’s all connected so what they do is they cut off that ileum part so the end of the small intestine is completely separated from the rest and they sew one end shut and the other end sticks out of your abdomen wall to create the stoma, it’s folded over, sewn to the abdomen wall just like the ileostomy. On that sewn up end, say that these are your ureters which are those tubes that will go from your kidneys down to your bladder so they disconnect them from the bladder and they insert them in at the end here. This is sewn up so the urine will pass through the small intestine and out the stoma.

A bag is worn for this type of ostomy also, but the bag itself is a little bit different it’s got more of like a tube drain at the end rather than a larger opening like on the colostomy and ileostomy bags just because if you have an opening that’s this large dumping urine out is just gonna splash all over the place so they’ve got more of a drainage system for the urostomy bags.

So those are the three types of ostomies that a colorectal cancer patient may get after their diagnosis. I hope that cleared up a little bit what each of the different ostomies are. Let me know in the comments below something that you learned from this video about the ostomies. I learned that the stoma for urostomy is made from the small intestine. I always assumed that it was made out of some part of your original urinary system.

If you happen to have missed my diagnosis video and are unsure why I need an ileostomy, there’s the link click on that or the link will also be in the description below so that you can get caught up to speed on that. If you learned something new in this video I’d love it if you hit the like button for me, and thanks for watching I’ll see you next week.

* Click here to subscribe to my YouTube channel

* Click here to read My Diagnosis blog post

My Oral Chemo Experience

Posted on June 10, 2020October 13, 2020 by Jelena

My Story of Going Through Oral Chemotherapy

Hi! Today I’m gonna be sharing with you my experience going through the oral chemotherapy called Xeloda, which was part of the first step of my treatment for stage 3 colorectal cancer. If you’re new to this channel, welcome to Life as a Cancer Survivor. My name is Jelena and I was diagnosed with Stage 3 Rectal Cancer in May 2016.

Radiation and oral chemotherapy was the first step in my treatment and in my last video, I talked about how it was going through radiation so if you missed that click on the link up here and you’ll get to hear more about the fun messages I wrote on my butt for the nurses to discover at the end of each week.

On June 7th, 2016 five days after my initial appointment with my oncologist he gave me a call to confirm the results from my rectal EUS that the tumor was rated a T3 which meant that I would be starting radiation and oral chemotherapy soon. He said I would call in the prescription right away for the chemotherapy pills Capecitabine, also known as Xeloda, and he asked me when I was scheduled to see the radiation oncologist. So I said I wasn’t scheduled until June 17th, so 10 days later for that appointment. So he said he would give the office a call right away and see if they could fit me in any sooner.

Well sure enough that afternoon I was in with the radiation oncologist so things were getting started really quick here and the following week is when I would get started with radiation and chemotherapy. The next day I ran into my oncologist after my mapping CT scan and he asked if I had heard anything about the chemotherapy pills yet. I was kind of surprised that he had already recognized me even though I had only met him once in person but I guess because of the type of cancer that I was diagnosed with and my age that made me kind of memorable to him.

We got scheduled for a chemo class with a Physician Assistant at the Oncologist’s office that following Wednesday and all caregivers were supposed to attend so I made sure to let my parents know that they needed to fly in before Wednesday so that everybody could be in attendance for that.

The next day the Radiation Oncologist’s office called to see if I’d gotten my chemotherapy pills yet. I mentioned that my oncology doctor was having his nurse take care of it, but the woman at the radiation office that called me said that she knew that that nurse was not in today so she was gonna call the physician assistant to make sure that the prescription was called in and taken care of. Within five minutes I had a call from the pharmacy up in Denver to go over how to take the chemo pills, what side effects I should expect, and to verify the address where they needed to get shipped to, and how soon I needed them. I was really impressed with how fast these offices worked and how much pull they had to get things done. So I paid over the phone for the pills and they said that they were gonna have them overnighted via FedEx to get them to my house ASAP so I would be ready to start radiation therapy whenever that office was ready.

The oral chemotherapy I took was Xeloda and the pills were 500 milligrams each. That 2 Xeloda pills next to a juice glass afternoon the nurse from the oncologist’s office called me to give me instructions on how to take them. She said don’t crush them up and to try as hard as I could to take the dosage 12 hours apart, once in the morning and once in the evening. She also made sure that I knew that I was only supposed to be taking those pills on the days I went in for radiation, so Monday through Friday. I took two pills in the morning and then three pills in the evening 12 hours later. I’m not sure how well you can tell the size of them from this picture but here’s a picture of them next to a juice glass from my last week of chemo.

The nurse also called in an anti-nausea prescription for me in case the chemo pills maybe nauseous right away. She prescribed me 8 milligrams of ondansetron I’m bad at pronouncing these I don’t know how to pronounce them I just look at it I actually thought it was pronounced some different way until I looked closer at the bottle um but it’s known as Zofran. She said that if the first dose of chemotherapy pills made me sick that before I took the next dose to make sure I took that Zofran an hour before the next dose of chemo pills to try and keep the nausea at bay.

June 13th was my first day of radiation and oral chemotherapy and I also had my MRI scheduled for that day. I woke up at 5:45 a.m. to eat a muffin and take the first dose of chemotherapy pills to give me six hours between then and when I was scheduled to be at the hospital for my MRI. I was supposed to check-in at 12:15pm for that MRI at the hospital so if I woke up at 5:45 ate breakfast and the chemo pills I’d be done by 6:15 for sure and that would give me the six hours I needed to fast before the MRI. I tried to go back to sleep but I couldn’t fall asleep I started dozing off once everyone else started waking up so I just got up.

At 8:25 a.m. I got a call from the Imaging Office saying that they had a cancellation and wanted to know if I could come in for a 9:00 a.m. appointment. Well I said, I ate a muffin at 5:45 in the morning so I haven’t fasted for six hours is that gonna be okay? So they put me on hold, asked the MRI tech, came back and said yeah that’s fine get down here so I got dressed brushed my teeth really quick and headed down. After the MRI I went in for radiation ’cause they moved me up to an earlier time slot for that first day, I went home and had lunch, and then took a two-hour long nap I was exhausted.

Later that day after taking the second set of chemotherapy pills that evening I wasn’t feeling nauseous yet, so I was really excited that after day one I wasn’t having to deal with debilitating nausea.

On day two the whole family joined me down at the Cancer Center for the chemotherapy training class. I brought with me a list of questions that I had written down so that I wouldn’t forget any of them once we got down there. The class was just my family and the physician assistant sitting in a little room around a table. She opened up though asking if I had any questions first. I asked if it was okay for me to go in for acupuncture while I was going through treatment? She wasn’t sure so she had to go ask somebody else but she came back and said yeah that’s fine. I had gone in previously for acupuncture for treating headaches that I got all the time and it helped so I wanted to have that in my back pocket in case I started feeling a lot of pain or nausea just as another option for me.

Then I asked her if it was okay if I had a drink or two at my sister’s wedding which was halfway through my treatment. She made it sound like nobody had ever asked that before which I find suspicious, but she said as long as it was in moderation I was okay. Then she went over a list of all the possible side effects of chemotherapy and she even gave me a nice handout that broke it all down based on how common all of the side effects were. She said that the main side effects that most people experience while on Xeloda at varying degrees of severity are more than 25% of patients experience the side-effect of Hand-Foot Syndrome which includes redness and swelling of the hands and feet which can prevent normal activity, cracking and peeling of skin on the hands and feet, and then tingling and numbness or burning again in the hands and feet. Diarrhea was also a common side effect which includes cramping, gas, and bloating which I experienced the diarrhea and the cramping but I’m not sure if it was from the radiation or from the chemotherapy or both of them since I was taking them at the same time.

The one thing I would need to start doing on day 1 of treatment would be to do a mouthwash rinse after every meal that consisted of water, baking soda, and salt. It was meant to help prevent the mouth from getting sores which sounded pretty miserable and I really wanted to avoid.

She also mentioned that I would need to go into the oncologist’s office every two weeks while I was going through treatment just to check on my blood work and make sure that none of my levels were plummeting too low or going crazy.

Nearly two weeks into taking the chemo pills my insides were just really sensitive feeling and my appetite started to decrease. My oncologist’s nurse gave me a call to see how I was doing and so I mentioned those to her of course. So somehow a little portion of my video did not record so I’m just gonna pick up right here and let you know that after I told the nurse that my insides were feeling sensitive and my appetite decreased she mentioned that if I took the pills right away with food they get absorbed much faster so that I should wait closer to a half-hour after eating before taking those pills. It did seem to help some so I tried to remember to do that regularly for the rest of my chemotherapy.

Week three started with an appointment with the oncologist to go over my blood draw results from the week before and see how I was handling the chemo and radiation. As expected my white blood cell count had dropped into the low range but it was only low for a healthy adult. It was still within the low range that my team was comfortable with but I needed to be extra careful about germs because if I did get sick it would end up being much worse than if a healthy person got ill.

By the final week of taking the pills the only side effect that I was feeling that I could definitely attribute to the Xeloda was the Hand-Foot Syndrome. It wasn’t as severe as others have gotten it but my hands and feet were red and it was really painful to walk or even stand on my feet. My appetite was pretty low by that last week too. I discovered that if I took the Zofran, even though I wasn’t feeling nauseous taking that did help increase my appetite a little bit. But the side effect from that is that it would constipate me.

The final evening of taking the pills was pretty uneventful but I was definitely happy to not have to take those twice a day anymore. I did manage to avoid getting any mouth sores perhaps from that mouthwash that I was using that was baking soda, salt, and warm water, so I would definitely recommend to anybody starting any kind of chemotherapy that could cause mouth sores to use that.

I was relieved to be done with radiation and oral chemotherapy but I was not looking forward to the next steps that were coming up. I’d never had major surgery before so surgery was definitely a huge, scary unknown to me. Stay tuned to hear about my surgery in an upcoming video.

Next week I’ll be talking about great gift ideas to give someone that’s going through radiation therapy. I’ll talk about stuff that I received and also that fellow survivors received that they said was really handy for them. If you missed the video on the other part of my 28 days of treatment, the radiation therapy part, here’s a link to the video right there. And my face down here you can click on that to subscribe to my channel and you’ll be notified when that gift-giving video is posted and all other future videos. Thank you for watching and I’ll see you next week!

*This video was originally published on December 4, 2019

*Link to My Cancer Diagnosis, Tests, Tests, Tests, and My Treatment Plan blog posts

My Radiation Experience

Posted on June 9, 2020October 13, 2020 by Jelena

My Story of Going Through Radiation Treatment

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 Barium smoothie for CT scan 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 Apple 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 dot tattoo for radiation 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 Jelena standing in front of a radiation machine 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 highlighted picture of the pelvic area that would be radiated 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

Telling My Kid I Have Cancer

Posted on June 5, 2020November 22, 2020 by Jelena

The Story of Telling My Kid I Have Cancer

Hi, and welcome back to Life as a Cancer Survivor. Jelena here, and today I’m going to talk to you about my experience with telling our daughter Maelle that I have cancer. If you missed my diagnosis video I’ll have the link in the description below to catch you up on any of that. But I hinted in that that we tried to keep her out of the loop at the very beginning because we didn’t know how bad the cancer was so we didn’t want to let her know and have her ask us a million questions that we had no answers for.

But as a stay-at-home mom with a five-year-old that worked part-time from home, it was going to be really hard to hide all the tests and treatments from her. So we wanted to let her know what was going on early on in the process as soon as we knew what was going to happen. The question would be, how would she handle the news as a five-year-old?

To recap on the timeline of how we got to telling her, May 23rd I had my colonoscopy they found a mass. May 25th we found out that mass was cancerous. May 31st I went in for a CT scan, and a couple days later we found out from that CT scan it hadn’t spread to any organs. But then on June 3rd I had a rectal EUS also known as the rectal ultrasound, and in that it showed that it did spread to lymph nodes so that classified me as Stage 3 Rectal Cancer which meant I was going to be going through radiation and chemotherapy, then I would have surgery, and then possibly eight cycles of chemotherapy after that surgery. So now that we had a clearer picture of what my treatment was going to look like, we felt more comfortable and felt like it was the time to let Maelle know about my diagnosis.

At dinner that evening, after the rectal ultrasound, was when we broke the news to her. I told her that the reason that I had been going to so many doctors’ appointments the past couple weeks was because I have Rectal Cancer. Since she hadn’t been around anyone that had had cancer and didn’t see the bad stuff that it can do to people, she didn’t really get upset or sad by the news. She kind of just saw it as me telling her that I had the flu. I think that was our saving grace at that moment because she didn’t know what to expect so there weren’t any bad thoughts dancing around in her head about what could happen to me.

I explained the basics of all the tests that I had gone through so far, what they had found, that the prognosis was good, and that the cancer was not contagious, but also that I would probably have some rough and tired days ahead as I was going through treatment.

She didn’t have any questions for us after we did all that explaining she just soaked it all in. I’m sure her little brain was just grinding away trying to figure out and process all that we had just told her.

She did get excited when I mentioned that my parents, Grammy and Poppy, were going to be coming for a few weeks to help out while I was going through treatment. So seeing her excitement about that helped relieve some of my nervousness that I had about telling her that I had cancer.

That evening at bedtime she asked me what the tumor looked like. So I said I was able to bring home pictures from my colonoscopy so I can show them to her. She said that she wanted to see them right then, most likely as a bedtime stall tactic, so I told her she’d have to wait until the next morning to look at the pictures.

The next morning I showed her the pictures but she wasn’t really interested in them by then. I could barely even tell what the tumor was in those pictures since I’d never looked at pictures of a colonoscopy before, or a colon in a colonoscopy, so I’m sure she had no idea what she was looking at either. That evening at dinner Maelle asked if the tumor was still in me. So I had to explain to her that yes, the tumor was still in me and it would stay there until I had surgery to actually cut it out of me.

After that one question though she didn’t have any other questions for me. I guess since I didn’t really look or act sick, except in the bathroom, she couldn’t really understand that something really bad was going on inside me. This was her first experience with cancer too, so I think she just had no idea what even to ask.

Although she was only five at the time when I was diagnosed we still wanted to be as open and honest with her through the whole process. A few days later I was sent a link from the radiation oncologist’s office to watch a video on radiation therapy. So I had her watch it with me. I knew some of it was going to be pretty boring, but it showed what the radiation machine would look like so that was good information for her. And it also had a nice video animation of what cells looked like, how normal cells divide and die, and how cancer cells just keep dividing and don’t die.

About halfway through we had to stop the video because she was bored. But she made it through what I thought were the most important parts and the parts that would be the most informative to her.

The next day was my dry run for radiation, so all three of us went down together to the cancer center. I went down to the room where the radiation machine was, did my dry run, and then when I was finished I asked the nurses if John and Maelle could come down and see it, and they said “of course,” so down they came. They were both surprised at the size of the machine, but otherwise Maelle didn’t say much.

We then went to a room to talk to a nurse about the side effects of radiation. Maelle was sitting in my lap playing on her tablet, thought she wasn’t paying attention at all. Then the nurse mentioned that I would probably have diarrhea, maybe even at night time. Maelle perked right up and chimed in, “Mommy might need nighttime undies!”

I think having my parents come and stay with us for those first three weeks obviously really helped in many ways, but also really helped to serve as a great distraction for Maelle. It gave her two people to play with, which was really important since she was an only child and there weren’t really any young kids in our neighborhood. But it also freed me up to be able to go into my daily treatments without having to drag her with me.

They allowed her to keep a somewhat normal life by still going to the park for her tennis lessons in the morning, go to the ice rink once a week for a skating lesson, and just go out and have fun and do fun things while I was at home taking a nap. They gave her something going to be excited about rather than just being stuck around me all day and watching me progressively get more and more tired and more sick as I was going through treatment. Obviously I was still getting tired and sick but she had the distraction of Grammy and Poppy there so it wasn’t as in her face.

Telling your child that you have cancer isn’t an easy thing to do, and I’m sure telling an even older child is a completely different beast. Our approach to parenting was to be as truthful as we could with her and talk to her like she was an adult. So naturally, we were going to tell her about my diagnosis and then keep her in the loop as I went through treatment.

If you are a parent that was diagnosed with cancer or have a loved one that was, when did you tell your child or your children about it? Let me know in the comments below.

I hope you’ve been enjoying my videos. Please feel free to share them with anybody that you think might find these useful or helpful. I’d love it if you gave my video a thumbs up so I know that you’ve been liking my videos. And hit that subscribe button. Thank you so much for watching and I’ll see you next week.

*This video was originally published on November 13, 2019

*Link to My Cancer Diagnosis blog post

The Treatment Plan

Posted on June 5, 2020November 22, 2020 by Jelena

The Plan of Attack to Rid My Body of Cancer

Welcome back to Life as a Cancer Survivor. Jelena here, and today I’m gonna talk about my treatment plan. This video and the last one kind of overlap with each other a bit, but if I would have combined them into one it would have been way too long so, you’re welcome. Here’s two medium length videos instead of one super long one. First things first, exactly what kind of cancer I had would determine what my treatment plan would be, so if you’re just getting started with this cancer rollercoaster, your treatment plan may differ some from mine because it depends on what type of colorectal cancer you have and what stage it is.

Let me know in the poll below if you or a loved one has been diagnosed with cancer, what stage was it? Was it stage 1, 2, 3, 4, or I’ll even put an option for you of I don’t know because maybe you’ve got a loved one and they don’t want to disclose all that information to you. I’d love to find out what stages everyone is in.

In my last video I talked all about the tests that I went through to get to this point, so if you missed that video, oh hey, here it is. Click on that link so you can watch that and figure out what kind of tests help with the staging to figure out how advanced your cancer is. At my first appointment with my oncologist on June 2nd, he only had the data from my colonoscopy and CT scan. He explained that colorectal cancer is staged by looking at three different things. T is the depth of the tumor invasion in your colon or your rectum. N is the number of lymph nodes that are involved. M is metastasis if it’s spread to any other organs in your body besides the one of your initial diagnosis.

He said he thought it looked like I was T3 N0 M0 which just means the level of the tumor was at a 3 and that it hadn’t spread to lymph nodes or other organs. But he said that in a CT scan it’s really hard to see if any lymph nodes near the rectum are involved, so hence the need for me to be referred to that rectal ultrasound. That rectal ultrasound would determine if any of those nearby lymph nodes were involved and it would also give us a more accurate rating of the tumor if it was anywhere from T1 to T3. He also said that there was a spot that showed up on my CT scan which was an enlarged lymph node that was near my heart, but he said it was unlikely that it would have been cancerous because if it was all the lymph nodes heading up to that one should have been infected as well. To be sure it wasn’t anything that we needed to be concerned about he sent me in for the PET scan.

The PET scan would show that indeed the lymph node, the enlarged lymph node, in my chest was not cancer but there were multiple lymph nodes involved near the rectum. Ultimately he said that his prognosis for me was that this was curable and that my worst-case scenario would be that I would have a colostomy bag for the rest of my life. Hearing the oncologist say that he believed this was curable was a huge weight lifted off of my shoulders knowing that I was gonna survive this. Curable is not a term that oncologists throw around lightly so I knew that he was confident we were gonna get rid of this nasty cancer.

He said that if the tumor ended up being a T1 or a T2 they would just do surgery to get rid of it and that would be the end of my treatment. But if the tumor was rated T3 I would then have to do radiation and chemotherapy, then I would have surgery to remove the tumor, then perhaps adjuvant chemotherapy, which just means chemotherapy after your initial treatment has finished. My oncologist also noted that if I did have to do radiation and chemotherapy that it would be a low dose version of the chemo so there would be minimal side effects supposedly and I definitely wouldn’t lose my hair it just might thin. But also treatment would probably start in the next week or two.

The next day I had the rectal EUS, and at that appointment I found out that the tumor was rated a T3, and that nearby lymph nodes were also involved so that officially bumped me up to being diagnosed as Stage 3 Rectal Cancer. We also found out at that appointment that the tumor was only four centimeters away from my anal verge so my response to radiation would definitely determine whether or not I would end up with a permanent colostomy or just a temporary ileostomy. Four days later my oncologist confirmed with me the test results and what my treatment plan would be.

Step 1 of my treatment would be 25 days (actually 28) of radiation Jelena standing in front of a radiation machine therapy and oral chemotherapy. I would go in five days a week for five and a half weeks for pelvic and on those days that I went in for radiation I would also take chemotherapy pills called Xeloda, also known as capecitabine I’m sure I’m pronouncing it wrong but Xeloda is much easier to pronounce and what everyone knows it as. I would take two pills in the morning within about a half-hour of eating and then about twelve hours later I would take three pills in the evening. I was also given a prescription for anti-nausea medication to have on hand in case I got nauseous from the chemotherapy pills. This part of my treatment would start on June 13, 2016.

Jelena sitting up in a chair in her hospital room waving Step 2 of my treatment would be major surgery. The doctor that would be doing my surgery preferred to wait 12 weeks after finishing radiation and chemotherapy to do the surgery. He liked to wait that long because after you’re done with those the tumor continues to shrink afterwards. During that surgery, the plan was to remove enough of my colon and rectum that there were clear margins that had no cancer cells in them on either side of the tumor. They would also remove an unknown number of lymph nodes, whatever looked like they were still cancerous that were nearby the rectum. Depending on how much my tumor shrank from step 1 would determine whether or not the tumor was far enough away to save my sphincter muscles and allow me to just have a temporary ileostomy or if they would have to take all of it and I would end up with a permanent colostomy.

A colostomy is where they run part of your large intestine out of your abdominal wall and then you wear a special bag over it to collect the waste that comes out of it. But if the tumor shrank well in step 1 and they were able to remove the tumor and preserve my sphincter muscles, well when they sew those two bits back together it’s called a resection. And when they resect those areas the chances of that connection site leaking are about 25%. So in order to prevent poop from leaking out of that connection site and swirling around in my stomach, they would do a temporary ileostomy which is where the small intestine is run out of your abdominal wall and you also wear a special bag over it to collect your waste that’s coming out of it. I’ll talk more about ostomies in a future video and I’ll explain them a little more in-depth, show you what mine looked like, and show you what some of the supplies are that you’d need if you have one.

Step 3 would happen depending on what they found inside of me during Jelena at round 1 of chemo surgery but was most likely gonna happen just because of my age. Step 3 would take place six to eight weeks after surgery to give my body time to recover from all that slicing and dicing and it would be eight cycles of intravenous chemotherapy called FOLFOX. They wanted to do the second round for what they called mop-up chemo. Since I was so young at diagnosis and the cancer had spread to my lymph nodes they weren’t sure if any stray cells had gotten loose and were swirling around in my lymphatic system just waiting to multiply and spread more. So to make extra sure that they killed all the cancer cells and would give me tons of cancer-free years after this they voted to go aggressive with my treatment and have me do eight cycles of chemotherapy after surgery.

Step 4 would happen one to two months after my final cycle of chemotherapy if I ended up with a temporary ileostomy. I would have those 1-2 months to recover from those cycles of chemotherapy, build up my strength, build up my immune system, and they would reverse that ileostomy.

And that was the plan. It was all gonna take place over the course of just one year, but it was gonna be a long year. I just had to plug through each step one at a time to get to the finish line. One thing I’ve learned from all of these appointments is it’s really important to bring a friend or family member with you to them. That second set of ears really picks up extra little things here and there that you don’t. And also make sure you’re taking notes. Pen and paper, phone, computer, whatever your method of taking notes is do it because you’ll forget at least half of this stuff by the time you leave the doctor’s offices.

Tune in next week to hear how we decided to break the news to our five-year-old daughter Maelle, and her reaction to hearing that I might have some nighttime diarrhea during treatment. If you like this video, please hit the thumbs up button over here and make sure you’re subscribed so you’re the first to know what all of my new videos are posted. And if you have any friends that you think might be interested in some of these please feel free to share them that’s what I’m here for! Thank you for watching!

*This video was originally published on November 6, 2019

Tests, Tests, and More Tests

Posted on June 2, 2020November 22, 2020 by Jelena

Jelena smiling and doing a strong arm selfie

The Whirlwind of Diagnostic Tests For a Colorectal Cancer Patient

Welcome back to Life As A Cancer Survivor. Jelena here and today I’m going to talk to you about all the diagnostic tests that I underwent in order to both stage my cancer and to have all of the images that all of the doctors on my team needed. I’ll discuss all the five tests that I had to undergo and why but if you’re not sure what some of the tests are or if you don’t know what any of the machines look like, watch for a future video where I will discuss each of those in more detail and show you some pictures of what each of those machines look like. If you or a loved one is a cancer survivor and you had to undergo a test that I didn’t talk about in this video let me know in the comments below even if it’s not for colorectal cancer.

Barium smoothie for CT scan As I mentioned in my last video my colonoscopy doctor got me in touch with the imaging office for me to do a CT scan also known as a cat scan and that was scheduled for May 31st, 2016 at 9:00 a.m. For this CT scan, they had me drink the Barium smoothies, 450-milliliter smoothies, one every hour, and then they had me walk the halls to get it circulating through my body faster. Then at 11 a.m. they called me back, I had to change into scrubs, and then they put the IV into my elbow pit to get me ready for the scan.

You have to stay very still and hold your breath for the CT scan and since the tech can’t be in the room, the machine itself talks to you it tells you when to take a deep breath, to hold it, and counts down how long you have to hold it, and then tells you when you can breathe again. After the first two scans, the tech came in and said that the doctor would probably want a full head through the abdomen scan, so for that one, I had to hold my breath for 27 seconds for them to get that full scan.

After that, the fun part came. She tested my IV by pushing a saline solution into it which you can taste in the back of your throat. Then came the iodine contrast. The tech warned me that I would probably get a hot flash like feeling starting in my arms going to my throat and then ending in my groin but that it would go away after a few minutes. I thought okay it sounds weird but whatever. So she puts the contrast in and sure enough, I felt it in my arms first because that’s where it went into first, then I felt it in my throat, it almost felt like my throat was closing up a little bit but she had warned me about it so I knew that it was something to be expected, then as the machine was rolling in and telling me to take a breath I could feel it in my butt and it moved up to the groin and it totally felt like I was peeing my pants. I had to try super hard not to laugh because the machine was telling me it was time to hold my breath and I was not supposed to move so they could get clear images. So I tried hard held my breath and the tech said that they came out clear so I held it well. Then I had to wait a few minutes, get another dose of contrast, do another two scans, and then I was free. I could finally go home and eat some breakfast because I had to fast for four hours before this test so I was starving.

Friday it was time for test number two that the colonoscopy doc set me up for, the rectal GoLytely prep jug endoscopic ultrasound, also known as a rectal EUS which is what I’m gonna call it for the rest of the video. Since this was another test that uses equipment that goes up your butt to check out things in there it required another colonoscopy prep. This time though I did the ironically named GoLytely prep because you certainly aren’t going lightly after you finish off that gallon jug with the powder.

Again I was starving when I went in for this test because I had to fast the whole day before and I had to go to the hospital for this procedure to be done. But when I checked in I immediately got taken back to a room and when I got there the first nurse had a lot of trouble getting my IV in. She did it really slowly and it was really painful and then she thought she had it in too far so she backed it out a little bit and then she didn’t know if she had it in right so she went got another nurse and the other nurse checked it and said oh it’s blown out we can’t use it so she took it out and then that second nurse just jammed it in really fast. It hurt like crap but it was in and it was over with quickly rather than the long, drawn-out push in so that was not fun.

But then I got to go to sleep for the procedure and when I woke up I was super groggy I was stuck in a loop of asking John over and over and over again what time it was? How long did the procedure go? Did he get lunch while I was asleep? Over at least five times. Probably more. He would say more.

The following week I got a second CT scan this time at the radiation oncologist’s office he called it a mapping CT scan and wanted this one done so that he could tell exactly where he needed to focus the radiation for my treatment. For this scan I had to lie face down they gave me a positioner for my face to lay it down in so that I could breathe and then I was also supposed to hug it to keep my arms out of the way of the scan since they’re scanning down by my butt. My butt, by the way, I had to pull my pants and underwear down, but they oh so graciously put a towel over it so that I could be modest. They used a marker to put three dots on me, one on either side of my hip/butt area and one at the top of my butt crack. Then they also taped a wire, right down my butt crack, so that they would have a point of reference when looking at the scan. Once the scan was done they took the dots and they put pluses over them and then put a piece of circular tape on each one to keep track of where that position is because if those were the right spots they would use those to line me up in the radiation machine to make sure they had me positioned exactly in the right spot every time that I went in.

Test number four was an MRI five days later. My radiation oncologist said that the MRI would give better images to the surgeon so he could better know where exactly all of my organs and stuff were located when he goes in for surgery. My radiation oncologist even had a preferred center for me to go to that would give the clearest images to my surgeon. Once I got there I had to change into two hospital gowns, one opening to the front one opening to the back, and take off all of my clothes including my underwear.

When we go to the room with the MRI machine the tech says, well the doctor probably didn’t tell you about this but when you lay down on your back your rectum deflates so in order to get a good image of it they would have to inject a gel into my rectum that I would have to hold for the entire hour for the MRI. I pretty much just said whatever I’ve had so many things shoved up my butt the past like two weeks what’s one more thing.

So once the gel was in it basically just felt like I had a lot of gas, that I had to hold in for an hour. After that I got a starter IV, but they didn’t put anything in quite yet for the first part of the MRI. Then I got headphones and listened to some music and after about five or six songs I came out and then that’s when they started putting stuff into the IV.

Jelena smiling and doing a strong arm selfie My final scan was a PET scan, which stands for positron emission tomography, and that was done two days after the MRI. I had to fast for six hours again before this test but this time I didn’t wake up super early in the morning to eat something I slept through the night so dinner was my last meal. When I went back for the scan they told me that the injection was sugar with a radiation tracer and that I would have to lay still in a chair for an hour while I waited for that to circulate through my body so in went yet another IV she tested it with a saline solution to make sure it was working, I got the nasty taste in the back of my throat, so she left to go get the injection.

When she came back, she came back with this toolbox looking thing it was metal and big and she opened it up and there was a huge metal looking syringe in there, I couldn’t even see what was in it. When I commented about how crazy it looked she said oh lead is the only thing that blocks gamma rays and so the toolbox is covered in lead and the syringe has a lead casing around it to protect her from the gamma rays. Also, the half-life of the radiation in the injection was about 20 hours so for the next 20 hours, I would be emitting gamma rays. So once she gave me the injection I just sat back in a recliner waited for half-hour. After a half-hour I had to drink a bunch of water because they wanted me to empty my bladder right before I went in for this scan because apparently for the PET scan a full bladder acts like a wall and you can’t see anything. Unlike for like an ultrasound you need it full and it acts as a window. Who knew?

The scan itself started out with a quick CT scan. Then the table started moving bit by bit through the machine. After the test was done the nurse said that the machine had divided me up into seven segments from my head down to my pelvis and that the machine imaged each of those seven segments for two minutes.

Whew! That was a lot of tests in just a little over two weeks. One thing I learned from all of these tests is to plan on being at the doctor’s office for a few hours for each one. There’s quite a bit of prep that they have to do to get you ready for those tests so it’s never just an in-and-out appointment. It felt like a whirlwind when I was going through it all but I was focused on getting through all of these tests because that would give me more answers as to how severe the cancer was. Being able to focus on one test to the next, helped the cancer be a little less mysterious because each one showed a clearer picture of what exactly was going on inside my body so we could get a better treatment plan figured out for me.

If you enjoyed this video please take a second to hit the like button over here and if you haven’t already please subscribe to my channel also. And if you missed my diagnosis video to hear how I got to this point, oh hey, look there it is right there click on it or you can save it for later. Thanks for watching and I’ll see you next week!

*This video was originally published on October 30, 2019

*Link to My Cancer Diagnosis post