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Chemotherapy Colorectal FOLFOX (folinic acid, fluorouracil, oxaliplatin) Radiation Therapy Rectal Surgery Xeloda (capecitabine)

Jelena’s Stage 3A Rectal Cancer Story

Jelena T., Rectal Cancer, Stage 3A

Cancer Details: 7cm mass found
1st Symptoms: Gas changes, rectal bleeding
Treatment: Chemo, radiation, surgery for tumor removal, ileostomy reversal

Jelena’s Stage 3A Rectal Cancer Story

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

  • Name: Jelena T.
  • Diagnosis: Rectal cancer
  • Staging: 3A
  • 1st Symptoms:
    • Gas changes
    • Rectal bleeding
  • Treatment:


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.

Jelena T.

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 two 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 two 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.

In May, even without the probiotics, I started having the bleeding again. My stool started changing, and I was having more diarrhea. I was going more frequently as well.

I called the office again, and when I went in, she put me on a gluten-free diet. She thought maybe it was a gluten allergy. They also sent me in for blood tests to see if I had any other allergies.

That all came back negative. I didn’t have any allergies. The gluten-free diet didn’t change anything. Then she sent me in for a colonoscopy.

They referred me for the colonoscopy. I didn’t have to wait too long. When I woke up, the doctor said she had found a mass in my rectum and that she thought it was most likely cancer by the way it looked. They put a rush on the biopsy.

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, 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, so 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 found out when I posted on Facebook the day I started radiation.

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

What happened after the biopsy?

The doctor that did the colonoscopy referred me to have a CT scan and a rectal endoscopic ultrasound. I did the CT first.

It showed that it hadn’t spread to my liver or anything, but the lymph nodes near the rectal area were hard to see.

In the ultrasound, they could see the width of the tumor, and they saw that lymph nodes nearby were involved.

Were you nervous when you got the official diagnosis and staging?

It was a little bit scary, but the doctor was great. He had the results from everything. He knew it hadn’t spread to any organs, but it was just up in the air as far as lymph nodes and how deep it was in the rectal wall.

Based on what he saw from those results, he said it should be curable for me. An oncologist using the term “curable” made me pretty confident.

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 two 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 five 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. 

The chemo and radiation were still working in my body even though I wasn’t actively going through treatment.

After 12 weeks, I had surgery in October of 2016. That was a tumor resection. They wound up taking a foot of my colon and rectum. I also got a temporary ileostomy bag to allow the resection site to heal. 

What do you remember about the surgery prep?

I had to do a colonoscopy prep. I wasn’t allowed to eat that day. I had to take two laxative tablets and mix a bottle of laxative powder with gatorade in a 64-ounce pitcher. I had to drink an 8-ounce glass of that every 15 minutes until it was gone to clean everything out. 

They also gave me an antibacterial body wash. I had to shower the night before and make sure to get my belly button really well since they were going in through my abdomen. I had to scrub each area for a few minutes each, so I felt dry and gross after my shower. 

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 5:30am 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 five 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 four hours long. It wound up taking five and a half hours. My mom and husband started to get worried, but I think the surgeon had someone call the waiting room to update them. 

I was in pain when I woke up from surgery. I would try to wake up, but I was so groggy. I was in a recovery room for a while before they took me to an actual room. When I got to my room, my husband and mom were waiting for me. I remember seeing them across the room, and I kept falling back asleep. 

Once I was awake enough, I just really wanted to see my daughter. I didn’t care how horrible I looked.

I just wanted to see her. My dad brought her up to the hospital after she got out of school.

I had a foot-long incision in my abdomen and had all the laparoscopic sites, so I couldn’t hardly move. I couldn’t sit up on my own. I had to use the up and down buttons on the hospital bed.

She just kind of leaned it and nuzzled up to me. I knew I needed to get better and fight really hard so that I could get back home to her.

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 six 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 three and a half 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 eight 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 two or three 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 two 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 two or three days of each cycle so I wouldn’t feel so exhausted. 

I had a strange cold sensitivity. When I was there for my first round, I brought water with me so I could stay hydrated. About two hours into the first infusion, I took a sip of my room temperature water, and it felt like I had swallowed glass. It hurt any time I drank anything even room temperature.

For about two or three days after the first part of the infusion, I’d have to heat everything up. I drank warm water, tea, and coffee. When I would go home and eat, the first bite I took of something hurt my jaw and mouth. The rest of the meal would be fine, but the first bite hurt. 

I had cold sensitivity in my hands as well. I had to use oven mitts to get something out of the fridge. That didn’t last long, but it would last longer the further along I was in treatment. 

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.

How was the ileostomy reversal?

I finished chemo in March. They reversed the ileostomy in June. I wanted to do a race in May, so my doctor waited until after that to get the reversal surgery.

It wasn’t a long surgery. It wasn’t super painful. I knew the more of the pain meds I took, the more constipated I would be. 

I wanted to get out as fast as possible, and I knew they wouldn’t let me go home until I had pooped on my own.

The pain was much more manageable after having gone through the initial surgery, so I could handle it.

I was only in the hospital for two days. Once I got home, it was miserable for those first two and a half weeks.

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, and when that really kicked it, that started helping.

The daily medicine can take four to six 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, so 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.

I didn’t really process things when I was diagnosed and going through treatment.

It all hit me at once about three years after I was diagnosed. It was like a delayed processing of emotions.

I had my first anxiety attack on a plane by myself. It was a bumpy flight. I was stuck in the middle of three seats, all the windows were closed, and I started hyperventilating. I thought it was just because I was scared on the flight, but a few weeks later, it happened when we were watching TV.

We had started watching the HBO series Chernobyl. In the first episode, it shows everyone with radiation burns and all that, and that freaked me out. They just kept happening and happening after that. 

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. 

He stepped up a lot in helping out with our daughter. He was a hands-on dad to begin with, but he took on even more of a role to make sure that she would let me sleep and all that good stuff.

»MORE: 3 Things To Remember If Your Spouse Is Diagnosed With Cancer

How has your daughter been handling everything?

Our daughter was five when we found out. She was really young and our only child. From the beginning, we always have tried to treat her like she’s one of us.

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, so 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 dinner time, 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 week-long 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.

Did you talk about fertility preservation

The doctor mentioned it. We already have one daughter, and we weren’t planning on having any more kids anyway, so we didn’t discuss it any further.

It would’ve been even more stressful to have to deal with finding fertility treatment options while going through treatment. Not to mention, you have to put treatment on hold potentially while you wait to save eggs. 

I was grateful we weren’t really planning on having any more kids, but then again, once the door really slams, the reality of not being able to have more kids hits.

Even though I didn’t want any more, it’s sad because the option isn’t there.

»MORE: Fertility preservation and cancer treatment

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.

My parents came out and stayed with us for weeks at a time to help. My husband’s mom came and stayed too. Friends were always there when parents weren’t available.

We were able to bring her to different friends’ houses for the afternoon while we went to appointments if we needed to. That was amazing. We rotated so she didn’t have to go to one person’s house all the time. 

For the IV chemo, nobody could really come to each one. It was once every two weeks, and it was spread out. I didn’t expect someone to be with me at every single infusion.

My parents came to the first one, and my mom came down for the last one. My cousin came out for a few days to stay with me in the middle of them. 

One friend set up a meal train for me during the days I was going to be feeling bad after infusions.

Local people cooked and brought food. For people who didn’t live close, they had us list restaurants that we liked, and they sent us gift cards. Once, they actually called in food and had it delivered to us. 

Dinner is a simple thing, but it’s just one less thing to have to worry about if someone is willing to take care of it for you. That was amazing.

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.

What is your advice for someone who has just been diagnosed?

It’s going to be tough. It’s going to make you realize how strong of a person you are.

It’ll make you dig deep within. You’ll find courage you never knew you had.

Take notes at your appointments. Write stuff down. I started a journal when I was first diagnosed. I’ve got really detailed information on the first month or so, but then I didn’t keep up with it, so I don’t really have a lot.

I did start sharing more on Facebook and Instagram though, so I guess I have a log there sort of. 

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.


Thanks for sharing your story, Jelena!

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