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

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 machinetherapy 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 wavingStep 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 duringJelena 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.

Ileostomy reversal wound closingStep 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

Jelena smiling and doing a strong arm selfie

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 scanAs 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 jugendoscopic 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 selfieMy 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


shocked look on Jelena's face

Welcome back to Life as a Cancer Survivor! Jelena here, and today I’m going to tell you about my diagnosis story. In case you missed my last video on all the symptoms I was experiencing leading up to this point, link is in the description below. Check that out so you’ve got a little insight on what got me to this point.

colonoscopy prep itemsSo, referencing the last video, May 19, 2016, is the date that I found out I wasn’t allergic to any kinds of foods and gluten-free diet didn’t work, didn’t alleviate the symptoms so I was referred to a colonoscopy. The turnaround was quick so the next day I was at the grocery store buying all the supplies that I needed for my prep…Bisacodyl, Magnesium Citrate, a 14-day supply of powdered laxative (also known as Miralax), and a 64oz. jug of Gatorade…my flavor of choice was lemon-lime.

I started the prep on a Sunday, and it turned out that it wasn’t as bad as I anticipated. The worst part for me was being hungry and not being able to eat for the entire day before. That prep on Sunday started with me taking 2 tablets of Bisacodyl at noon. Then at 2pm I mixed the entire jug of powdered laxative in a pitcher with the entire 64 ounces of Gatorade, mixed it up, and put it in the refrigerator to cool so it would be more palatable when it was time for me to start drinking it for the prep.

At 6pm I had to drink 2 glasses of water, the entire 10-ounce bottle of Magnesium Citrate, and another 2 glasses of water. By the time I was done with that part I forgot completely about my hunger because I was up to my eyeballs in liquid!

At 5am on Monday is when the Gatorade/Miralax prep began. I had to drink an 8-ounce glass every 15 minutes until that 64 ounces was completely gone. At the beginning, I kind of had some cramping, probably because my system had no idea why I was taking a 14 day supply of laxative in 2 hours. But it eventually, the cramping, eased up and I finished the prep without too much difficulty.

My colonoscopy wasn’t until 1pm, so all morning I was starving. Starting at 9am I couldn’t glass of watereven drink water, which sucked because I was thirsty feeling of course once you know you can’t drink any more water, and you can’t even like drink a bunch to trick your stomach into thinking it was kind of full by being full of liquids. No, you’re just stuck being miserable.

My husband, John, took me into check-in at noon, and after filling out all of the paperwork we had like 45 minutes to burn before I was taken back. My daughter, Maelle, was finishing up her last week of preschool so my husband, John, had to leave go pick her up, and then come back to the colonoscopy facility to get me because you aren’t allowed to drive home after your colonoscopy, after getting anesthesia, you have to have somebody drive you back home.

Once my name was called and I went to the back, I got hooked up to an IV, and then the doctor that was going to be doing the colonoscopy came in to talk to me about what symptoms I was experiencing. She explained how the procedure would go and said that she would take samples from inside my colon during the procedure and that she would probably find out that I maybe had Crohn’s or Irritable Bowel Syndrome. I was put under for the procedure, so once I went to sleep I don’t remember anything about it until I woke back up.

John brought Maelle with him to come pick me up because we didn’t think anything serious was going to be happening. Boy were we wrong!

As I woke up from the colonoscopy, John and the doctor were in the little curtained off area where my bed was. I asked where Maelle was and John said that the doctor didn’t want her in that area and that she was just sitting right outside the curtain in a chair playing on her tablet.

That was when she gave us the news that she had found a mass in my rectum and that she was almost positive that it was cancer. She said she put a rush on the biopsy results so we would find out ASAP exactly what it was. But the fact that she put a rush on it and just the seriousness in her voice made us realize that this was probably something that was going to be really bad.

We were in shock, but we tried not to go down that what-if road because we didn’t know what we were dealing with yet.

For me though, it was pretty much impossible for me to keep from going down that road. My first worry was about my daughter, who was 5 at the time, growing up without a mother. My next concern was we were in the middle of building a new house. Should we even continue with building the house? It was just in the early stages so we could still get out of it and not lose too much money. But, we wouldn’t need this new house if I wasn’t going to be around anymore. But there was still a chance (although very small)that it wasn’t cancer, so I tried to stuff those what-ifs down and not think about them.

Two days later I got a call from the doctor’s office saying that my biopsy results were in and I needed to make an appointment to come in and find out my results. They had an opening at 12:30 and at 4:30. It was Maelle’s last day of school that day and at 11:45 was End of Year Circle time where the teachers were going to read a story all the students would get a certificate, then they’d go outside and have a picnic lunch with all of the parents, and then have ice cream to finish off the final day.

I didn’t want to ruin Maelle’s end of year celebration and knew there was no way I could do that and the 12:30 appointment, so I chose the 4:30 one so we would have one final day of normalcy before we find out what exactly is going on inside me. I’m not much of a crier, but I had to try SO hard to not bust out in tears when my daughter got her end of year certificate. A million things were racing through my mind, first and foremost, am I ever going to see her finish another year of school.

That afternoon we took her over to a friend’s house so that John and I could hear the results on our own. We didn’t disclose any information to Maelle yet, because she is a curious girl and she was going to have a million questions and we would have zero answers yet for her.

At the office, the doctor was in a really upbeat mood when she was walking us back to the room and she was asking us how our day had been, so I thought that the news couldn’t be that serious since she was in such a good mood. Well, the conversation quickly took a dark turn and she confirmed that the biopsy results showed that the mass was indeed cancer, and because of the location of it, it was considered Rectal Cancer. Because Rectal and Colon cancers have many features in common they get lumped together under the name, Colorectal Cancer.

After learning the news we all cried, but then the doctor just jumped right into explaining what the next steps were going to be. A CT scan and a rectal EUS (also known as a rectal ultrasound) would be the next 2 tests that I would undergo to help with figuring out the staging of my cancer to see how serious it was. I was so grateful that she knew exactly where I needed to go to get these tests done and that she was doing what she could to get me in ASAP because I would have had NO idea where to start. And as a patient calling in, I’m sure I would not have gotten in as fast as she could get me in to get these tests done.

Unfortunately, the next day I was scheduled to fly back to Ohio for my sister’s bridal shower. But the doctor assured me that I would be fine to go have fun because she probably wasn’t going to get me in in the next 2 days anyway and then the following Monday was Memorial Day. So she said go have fun. This will be waiting for you still when you get back, it’s not going to advance that far in these couple of days that it’s going to make a difference in your treatment.

So I flew home to Ohio with the knowledge that I had cancer but had no idea how serious it was. My parents and sister knew that I had cancer, but the rest of the family did not so I decided to wait until after my sister’s bridal shower to tell anyone else so that she could have her happy day and her day to shine.

Life was already changing into a whirlwind of appointments. As I was waiting for my flight, the imaging office called to schedule my CT scan, which I scheduled for Tuesday, May 31 at 9am. The soonest that I could get in.

The next day, my sister took me out for my birthday to our favorite amusement park, Cedar PointJelena and her sister with the Blue Streak rollercoaster in the background. We had tons of fun at the park, all while I was trying to push down those thoughts that this could be the last time I ever ride these roller coasters. In the middle of the day, while we were waiting in line for the coaster Valravyn, the Oncologist’s office called to schedule me for my appointment with them which would be the following Thursday which would give enough time for the CT scan that I would take on Tuesday to get to the office so that we could discuss my treatment plan. Thankfully that was the only interruption to our day, which didn’t end until all the lines were closed down and they were shooing us out of the park.

Tune in to my next video to hear about all the diagnostic tests that I underwent to stage my cancer and also to prepare for treatment. If you like what you heard in this video, hit the like button over here, and be sure to subscribe to my page so that you’ll be notified when all of my new videos are posted. Thank you for watching!

*This video was originally published on October 23, 2019

*Link to My Cancer Symptoms post


My Colorectal Cancer Symptoms

Welcome to Life as a Cancer Survivor!  Jelena here to tell you all about the symptoms that I experienced leading up to my Colorectal Cancer diagnosis. The symptoms that I experienced are definitely ones that are commonly experienced by others that are diagnosed with Colorectal Cancer but can also be symptoms of many other gastrointestinal issues.

If you start experiencing changes in your bowel habits, definitely check in with your doctor and keep pressing for answers until your symptoms subside. Some important things to keep track of for when you do talk to your doctor are:

    • When did the symptoms start?
    • Is there anything that you do that makes your symptoms better or worse?
    • What is the quality of the symptom or pain (like is it a dull or sharp pain, are you having blood in your stool, has your stool changed), those kinds of things.
    • If there is pain, does it start in one place and radiate to another?
    • How severe it is, and how long the symptoms last.

Colorectal Cancer is on the rise in young adults, so don’t let your doctor tell you that you’re too young to be checked. In fact, if you were born in 1990 or later you’re twice as likely to get colon cancer and 4 times as likely to rectal cancer as somebody who was born in 1950. I’ll have the link below in the description to the summary of the study. And within that summary, there’s a link to the initial publication of that study in the Journal of the National Cancer Institute.

Now to the details of what my symptoms were.

It all started in June 2015. The smell of my gas changed and it was much stronger and much more potent than it ever was before. By August 2015 I was tired of those smelly farts so I bought a probiotic at the natural foods store thinking that that might help. Well, shortly after I started taking the probiotic I experienced my first bout of rectal bleeding, and it usually would happen when I was passing gas. In fact, I had to be on the toilet to pass gas, otherwise, I would have to change my underwear. Yuck, I know. The blood was red, so it was fresh, and there was mucus in it. I stopped taking the probiotics because I thought that those were the root of the bleeding.

Jelena at a Christmas tree farm

I gave my system a little bit of time to reset and then 2 months later in October, I decided to try the probiotics again ’cause I was still having the smelly gas. Sure enough though, soon as I started them again, the bleeding started again. So I stopped them again for good. I thought I was just going to have to deal with really smelly gas forever.

I mentioned the gas and the bleeding when I went in for my annual physical in February 2016, but since it wasn’t actively happening at the time, at least not the bleeding part, my Nurse Practitioner just said to give the office a call back if it started happening again and sent me along on my way.

Well, nothing actually happened again until May 2016.

The bleeding started again when I would pass gas, and I started passing bloody mucous with my stools. I had never had any digestive issues in the past. I always had regular bowel movements, and I had a stomach of steel it was never bothered by anything I ate, which for the past 14 years had been a vegetarian diet.

I wasn’t taking the probiotics this time, and then I started having loose stools. So my symptoms were back, and more were adding into the mix. I called the doctor and made an appointment with the Nurse Practitioner again, and when I went in she put me on a gluten-free diet for a week and had me go down to the lab and give vials and vials

 of blood to see if I had any kind of food allergies or sensitivities that could be causing this bleeding and the loosening of my stools.

The gluten-free diet was pretty hard for me as a vegetarian because carbs were a huge part of my diet, but I managed for that week. After a week on that gluten-free diet, no change in symptoms, all the food allergy tests came back negative so they decided to send me in for a colonoscopy, to see what’s going on inside.

The colonoscopy was scheduled for May 23, 2016. Check out my next video, My Diagnosis, to find out what happened in that colonoscopy.

*This video was originally published on October 16, 2019

*Here is the link to the site I mentioned on the rise of Colorectal Cancer in young adults: https://www.cancer.org/latest-news/study-finds-sharp-rise-in-colon-cancer-and-rectal-cancer-rates-among-young-adults.html



Smiling Jelena with curly purple hair

Get to Know Life as a Cancer Survivor!

Welcome to Life as a Cancer Survivor.

Jelena sitting in a chemo chair with a purple blanket in her lap holding up 7 fingers
Jelena holding up 7 fingers for her 7th round of chemo

My name is Jelena and I was diagnosed with Stage 3 Colorectal Cancer at age 34.

As someone with no family history of the disease and not knowing anybody else that had it, I felt pretty alone. I struggled to find information about what treatment actually would be like without being scared by the statistics of the grim side of cancer.

My hope is that this channel will be a helpful resource not only for those that are just starting their life as a cancer survivor but also to those that have been a part of the cancer world for a while. Join me as I talk about my journey from diagnosis to navigating life after treatment.

*This video was originally published on October 9, 2019