Jelena’s Stage 3A Rectal Cancer Story

Jelena shares her stage 3A rectal cancer story and details undergoing treatment, including radiation therapy, oral chemo, FOLFOX IV chemo, and surgery.

In her story, Jelena also highlights navigating life after her rectal cancer diagnosis, including the impact on her marriage, how she approached her daughter about cancer, dealing with fertility preservation, and her new normal in survivorship.

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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Diagnosis

What were your first symptoms?

In June 2015, I experienced a change in my gas. It was a lot more pungent than usual. After about 2 months, I was tired of it. I went to the natural food store and bought some probiotics to see if that would help.

I started taking those, and after a few days, I started experiencing rectal bleeding when I would pass gas. I had to be on the toilet to pass gas.

I stopped taking the probiotic, and the bleeding stopped. The bad gas was still there, but the bleeding stopped. I thought the probiotics were the cause of the bleeding.

I gave my body like 2 months to readjust, and then I started taking them again. The bleeding came back, so I thought for sure the probiotics were the problem.

When did you go to the doctor?

When I went in for my annual physical in February, I mentioned it. Since the bleeding wasn’t happening right then, she chalked it up to me getting older and things in my body changing.

She said if the bleeding started again, I should give the office a call.

How were you feeling when she said it could be cancer?

We were in shock, of course. I didn’t have any family history of colorectal cancer and didn’t know anybody who had it or anything. She said there was a small chance that it wasn’t cancer, but she put a rush on the biopsy. I knew that was probably bad news.

We didn’t know how bad it was, so we tried not to freak out. I knew with early-stage cancers, they can kind of just go in, cut it out, and you’re pretty much done.

I didn’t think too much about it, and I didn’t Google it or anything. I didn’t want to scare myself with what it could be.

»MORE: Patients share how they processed a cancer diagnosis

How did you break the news to family and friends?

My parents and my sister knew I was going into the doctor and knew about the diet and all that. I had told them they were scheduling me for a colonoscopy. They knew the results that evening. 

Later that week, I flew out to see my family for my sister’s bridal shower. I told them in person after the shower, even though we didn’t know how far along it was. 

I had a group of friends I would go running with on Tuesday nights, so I told them that next Tuesday. I told some friends in person, but for those who weren’t super close, they found out when I posted on Facebook the day I started radiation.

»MORE: Breaking the news of a diagnosis to loved ones

Treatment

What was radiation like?

I had to do a CT scan with the radiation oncologist, so he could map where everything was. This time, I was face down, so he could put the plan together. 

It was targeted radiation. I had to lie on my stomach. It went from the backside and over from both sides to the hips. 

He had said there was a chance I could go into menopause from the radiation, and I did. Starting from right about when I was diagnosed to this day, I haven’t had a period.

I had diarrhea, and towards the end, there was some burning. They prescribed me a cream, and that helped. It didn’t get too red on the outside, but on the inside, it was pretty raw. With every step that I took, it felt like there were thorns up my butt. 

For a while after radiation, I would just lay in bed on my stomach with my butt in the air. 

»MORE: Read other patient experiences with radiation therapy

Describe the oral chemo while going through radiation

I was on Xeloda. I was taking that on days I went in for radiation in the morning and afternoon. The tricky part is I don’t know how much of my side effects were from radiation and how much were from chemo. 

Obviously, the burning and pain in the rectal area was from radiation. I don’t know if the fatigue and nausea I had was radiation or chemo, though. I didn’t have terrible nausea, but towards the end, I lost my appetite some. Taking the anti-nausea pills helped quite a bit. 

I’m not a napper, but I was napping about an hour or 2 a day. I was just overall feeling tired and worn out.

You took a few months off of treatment after radiation and oral chemo

I took 12 weeks off after the first 5 weeks of treatment to let the tumor keep shrinking and to let my body heal. The surgeon wanted to let the chemo and radiation do as much as they could before surgery, as well as let me rest. 

I wasn’t allowed to put any deodorant or lotion on. I had to get in bed and go to sleep. I did the same shower routine in the morning right before going into the hospital. 

Check-in was at 5:30 a.m. for me because I was the first one in line for surgery that day. My parents flew in for surgery to help out. My daughter was only 5 at the time, so they came to take her to school and keep an eye on her for me. They were both retired, so that was nice. 

My mom and my husband took me to the hospital. They hooked me up to the IV. They gave me a little hat that I was supposed to put on when I went in for surgery. I don’t remember putting it on, but I guess I did. 

How was waking up from surgery?

Surgery was supposed to be about 4 hours long. It wound up taking 5.5 hours. My mom and husband started to get worried, but I think the surgeon had someone call the waiting room to update them. 

How long was recovery?

My surgery was on a Friday. I got out of the hospital the next Tuesday. They wanted me to get up and walk the night after surgery. They had to help me sit up and swing my legs off the bed. I think I sat there for a good 30 seconds before I had to lay back down.

At home, it was still really painful. The car ride home was bad. I could feel every bump. You don’t realize how many muscles you use to just sit up. Sitting on the couch was okay, but I couldn’t get up. I’d have to roll over really slowly. It was a whole ordeal just to get up.

The first night I was home, I was really afraid of sleeping in my own bed because I was used to the hospital bed being able to sit me up. I just had to learn to roll over and gently push myself up.

It was nice to be home, but it was hard. I couldn’t do much or really walk very far. They wanted me to up my protein after surgery because that supposedly helps in recovery.

We went to Whole Foods to find some protein powders or shakes. I didn’t have much of an appetite, so we figured that was a good way to get some protein in me.

It took so much effort to walk from the car to the store, so I got one of the little electronic baskets to wheel myself around the store. On the outside, I didn’t look like I should’ve been in one of those chairs.

It made me feel weird. I was ready, though. If anyone looked at me weird and questioned why I was in one of those, I was going to lift my shirt and show them my incision. It’s a good lesson. You never know what someone is going through.

It took me about a week before I could get out and walk around the block. I was a runner before I was diagnosed. I wasn’t ever super awesome at it, but it got me out of the house. I really wanted to run a 5K 6 weeks after my surgery. I tried my best to jog after I got the okay from the doctor. I ended up walking and jogging the 5K, but I did it.

Describe the FOLFOX chemotherapy

I got my port placed in early December. That was a quick outpatient surgery. It was no big deal. Then I started IV chemo. I would go in the day before and have blood drawn to make sure my counts were going to be okay. I would usually be there for about 3.5 hours in total on chemo days. 

I was going in for infusions every other week, and the treatment was called FOLFOX. Usually I would go in on Monday, Tuesday, and Thursday. I did 8 rounds, which was 16 weeks. One infusion was delayed by a week because of my white blood cell count, but they quickly came back up. 

They gave me anti-nausea medicine first through the IV. The main part of chemo took about 2 or 3 hours. I brought a blanket with me, and they had pillows. I brought a tablet to watch TV shows or play games.

Usually, my husband went with me. If not, I had a group chat with my mom, sister, and some other family members. They would keep me company and make the time go by faster. 

After I was done with the infusion, they would hook me up to a chemo pump, and I wore that at home for 48 hours. I would have to go in after those 2 days and get disconnected from the pump.

Did you notice side effects from the IV chemo?

The fatigue was more intense this time around. On top of feeling tired from the chemo, the steroids kept me from sleeping.

After the second cycle, I told them I wasn’t able to sleep. They prescribed me some Ambien, and I took that for the first 2 or 3 days of each cycle so I wouldn’t feel so exhausted. 

During the last couple of cycles, I had some neuropathy. It was strongest in my feet. It would go away after a few days. For the last infusion, they took out the “ox” drug because that was the one that caused the neuropathy and cold sensitivity. 

No Evidence of Disease

How did you find out you had no evidence of disease?

I went to the hospital for an intestinal blockage. It was basically like my intestines were lazy from everything my body had been through. They had to do a CT scan to see what was going on. In that scan, they saw there was no cancer. 

I was so happy. We knew they had taken all the cancer out in the surgery, but I still had to go through chemo. There could’ve been something residual left. This was the first time someone had said I was cancer-free. That was amazing.

When they reconnect you the way they did me, your colon doesn’t have a short jog to the side before it connects to the rectum. That meant when I stood up, it felt like everything that was moving its way through my body felt like it rushed down. Since my sphincter muscle hadn’t been worked in so long, it was really hard to control it. 

Even for a normal person, it’s hard to hold diarrhea. If I would stand up, I would have to sprint to the bathroom. I was going 20 times a day. When you have diarrhea a few times, it starts to hurt. When you got 20 times or so a day, things got pretty raw back there. 

I was using wipes and diaper rash cream as a barrier to try to protect everything. I bought Depends and wore those for a few days. I had leftover pads I hadn’t used, and I would shift those backwards and use those. After a few days, there weren’t any huge accidents or anything, and a pad was enough to catch anything. 

The surgeon told me to go back to eating a regular diet, and everything would be back to normal in a month. Everybody on a Facebook group I was in said their doctors told them to go to a low-residue diet. I changed my diet, and that helped slow things down a little bit.

When I went in to my follow-up appointment with my surgeon, he said I could start taking Imodium and Metamucil to help bulk up the stools and slow it down. It’s been trial and error since then to get my bowel habits managed. 

Do you have any lasting effects from treatment?

I’m still having horrible gas. My husband calls them surgically enhanced farts. I’ve been talking to a lot of people online and trying to figure out what works for other people. It’s a lot of trial and error, especially since I don’t eat the same thing every day. 

I went to see a gastrointestinal doctor who specializes in women’s digestive health and colorectal cancer. She has slightly changed what I was doing. She has me taking a probiotic to get things repopulated and balanced in my digestive system. That seems to be helping now. 

My car doesn’t smell like farts anymore. The house doesn’t smell. My stool looks more like it did before I got diagnosed, and I’m not going like 20 times a day. It’s a couple of times a day, which is much more manageable. I don’t have that urgent feeling to go anymore.

You’ve been having some anxiety now that you’re out of treatment

I started having panic attacks at the beginning of Summer 2019. The gravity of everything hit me. I went to the doctor, and they gave me a daily pill to take and some Ativan for when I was having a panic attack. I was taking that daily pretty much because I was having panic attacks daily. 

The doctors freaked out when I told them I was taking Ativan every day, so they upped my dose on the daily medicine. When that really kicked it, that started helping.

The daily medicine can take 4 to 6 weeks to kick in, and when you’re having panic attacks every day, that can feel like forever away.

After a while, I didn’t have to take the Ativan every day, but I was still having trouble with sleep. Now they have me on a different medication that’s not addictive to help me with that.

I’m trying to wean myself off the sleeping medicine now, but I’m still on the daily. I’m going to take it at least through the holidays and see what happens. 

Before all this, I’d never had panic attacks or anxiety before. It was really out of the blue. When I was going through treatment, I kept an upbeat attitude about everything. I’m usually a decently optimistic person.

Family & Support

How did the cancer affect your relationship with your husband?

For us, it made us stronger. We’re both very independent people. It forced me to rely on him more than I ever had to before. In the beginning, that was really hard for me. I had a hard time admitting I needed help.

I didn’t have the energy and wasn’t able to handle it all alone. He came to all of my appointments with me and was my second set of ears. He’s a very logical person. He was upset and scared with me when I got the diagnosis, but after that, he started to plan and figure out how to take care of things.

The day-to-day stuff didn’t outwardly affect him. He grew up in a military family, so he can detach from a lot of situations. It’s like he was trained from a young age for his wife to be diagnosed with cancer. 

We never did baby talk. She’s been around adults a lot. She still has rules like a kid, but she’s pretty grown up for her age. 

We knew that we wanted to tell her. She was there at the facility when I had the colonoscopy and the doctor told us the news. She was at a friend’s house when we got the official news it was cancer. 

We knew it was cancer, but we didn’t know how bad it was. We wanted to wait until we knew more to talk to her. We knew if we told her I had cancer, she would be curious and ask questions, and we didn’t have all the answers yet at that point.

We waited until we found out the staging and what the treatment was like. We sat her down at dinner and told her, “Mommy has cancer. I’m gonna have to go through some treatments and surgery. I might be more tired than usual sometimes. Grammy and Poppy are going to come stay with us, and you might have to go to a friend’s house sometimes.” 

She was excited about those aspects. She loves when her grandparents come stay, and she enjoys playing at friends’ houses. We hadn’t had a family member who had cancer while she’s been alive, so she didn’t have anything to compare it to. She didn’t immediately think death like most adults do. 

It was just like I had the flu or something to her. We tried to explain a little bit. The next day at dinnertime, she asked, “Is the cancer in you gone already, mommy?” We had to explain that it would be longer than that, but she eventually got it. 

She turned into a caregiver for me. She loved tucking me in at night. I would go to bed at the same time as her. She would put me to bed and read me a story. She loved to take care of me.

The hospital was really boring for her. She was okay for a little bit, but she couldn’t really stay busy very long. The TV channels weren’t very good there, so she couldn’t even really watch any TV with me. 

She saw me tired a lot. She would get upset every now and then that I couldn’t play with her or do certain things because I was too tired. While I was going through chemo, I heard about a weeklong camp in the summer for kids who have a parent going through cancer. 

It was free since you’ve been going through treatment, so we were like, “Oh, that’d be great.” We applied and sent her to that camp. It helped her understand that there are other kids going through this and express her feelings about not being to be the one to get all the attention all the time.

My parents said that they noticed a big difference in her before and after camp. She seemed happier again afterwards. It still affects her to this day. She still gets upset that I’m not back to normal. If she notices I’m in the bathroom for a while, she wonders why I can’t be done faster. She still asks about it sometimes. 

In the spring, she overheard some older kids in the library giving a presentation on cancer, and she said, “I almost cried because I heard them talking about cancer.” She still is affected by it, but she doesn’t show it too much.

What were some practical ways people supported you?

Having a young daughter helped to get me to talk to everybody about what I needed. As soon as you tell someone you have cancer, they ask, “What can I do?” That was nice.

People swinging by to drop off a card, bringing chocolate, or texting me in a group chat to make the chemo go by faster. All of those kinds of things were so great. 

One of my friends from high school got a group of friends together, and everyone sent her stuff to put in a care package. They put a bunch of music on a USB for me. They put gift cards in it. There was a funny book in there.

I saved the book for surgery, which was not good because it hurt to laugh. There was an Ohio shirt that had been sent around to all of them with all their signatures on it. I wore that to my first chemo. 

What’s your “new normal”?

I definitely have more of a ‘no regrets’ attitude. If I’m on the fence about something, I’m like, ‘Let’s just do it.’ Life is not guaranteed. Even though my prognosis is good, I still feel like I need to live my life.

Even though I’m supposedly healthy, I’d be happy to make it to 60. Now that I feel like my life might be shorter, I need to grab life by the horns and do whatever makes me and my family happy. 

I refuse to miss out on opportunities now. We usually go out and ski a couple of times, but this year I want to get a season pass. We’re going to go to the nice places. We’re going to get out and ski all winter. It’s going to be a good season.

Don’t be afraid to reach out for help and support, whether it’s people you know or people you meet online. That was a big help for me. Connecting with people on Facebook and Instagram and online communities was amazing.

Being able to share your journey with someone else who’s going through something similar is so important, because you’re not alone, and you need to be reminded of that. 

There’s someone going through what you’re going through. They’re just not in your backyard. You have to find them.

It’s easy to connect. There’s so many people like me who are super friendly and willing to share and support you. You just have to take the first step and connect.

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Rectal Cancer Stories