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Avastin (bevacizumab) Chemotherapy Colon Colorectal FOLFIRI (folinic acid, fluorouracil, irinotecan) FOLFOX (folinic acid, fluorouracil, oxaliplatin) Medical Gaslighting Surgery

Zykeisha’s Stage 4 Colon Cancer Story

Zykeisha L., Colon Cancer, Stage 4 Symptoms: Anemia, stool changes, blood in urine, back pain
Treatment: Chemo, Avastin, FOLFOX, FOLFIRI, surgery, Neupogen shots

Zykeisha’s Stage 4 Colon Cancer Story

Zykeisha, a 37-year-old mother and fire rescue dispatcher, faced a difficult battle with stage 4 colon cancer. Her journey was marked by initial misdiagnoses and persistent symptoms like anemia and unexplained back pain which arose around the time of her pregnancy. Despite enduring grueling treatments including 12 rounds of chemotherapy, liver surgery, and a subsequent cancer relapse, Zykeisha’s faith and resilience moved her forward. She became a beacon of hope, advocating for herself with determination to overcome each setback.

Through her journey, Zykeisha emphasizes the importance of self-advocacy, urging fellow cancer patients to ask questions, explore treatment options, and prioritize their mental and emotional well-being. With her infectious smile and steadfast faith guiding her, Zykeisha’s story serves as a testament to the power of resilience and inner strength in the face of adversity.

Zykeisha shares her stage 4 colon cancer story
  • Name: Zykeisha L. 
  • Diagnosis (DX):
    • Colon Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Anemia
    • Stool changes
    • Blood in urine
    • Sharp back pain
  • Treatment:
    • Surgery
    • Chemotherapy
      • Avastin
      • FOLFOX
      • FOLFIRI
    • Neupogen shots
Zykeisha shares her stage 4 colon cancer timeline

Whatever gives you peace while going through something like this, find that and protect that.

Zykeisha L.

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


Pregnancy & Symptoms

Tell us about yourself
Zykeisha is a fire rescue dispatcher

My name is Zykeisha. I am 37 years old. I am a mother of two beautiful, active boys. They are seven years apart. One is 13 years old and 7 years old. I am a fire rescue dispatcher by occupation. Hobbies: I love traveling. I love reading. I’d rather read a good book than watch a movie. I love to laugh, like anybody. I’m always smiling, that’s how I’ve always been. No matter what, I’m going to smile when I find a reason. 

What were your initial symptoms?

I started experiencing symptoms in, I want to say, 2014 or 2013. I did not know initially that they were symptoms. I started having issues with anemia, so I had applied for insurance that they were telling people to go get – the cancer insurance. The insurance company actually dropped me, but kept my then husband and my youngest son. I received a letter in the mail that said I was dropped, and I was like, he has more health conditions than me. How was I dropped? I did not know that anemia is one of the things that insurance companies look for as a sign of cancer.

We had to do a physical for my job and I did my physical. The physician called my mom and said, “Your daughter needs to go to the hospital. Her hemoglobin is super low. She could pass out.” I didn’t think much about it. I went later on that night because I had a migraine. 

I did not know that anemia is one of the things that insurance companies look for as a sign of cancer.

Zykeisha was dropped from cancer insurance due to anemia
She went to see the doctor for her new symptoms

The doctor actually did a very uncomfortable stool test right then and there in the room. Beyond uncomfortable. They were checking me to see why my hemoglobin was super low. It was not because of a cycle. It was not because of anything. Nothing else was said or done about that. I was given a blood transfusion and nothing else. I was told to go on bed rest for two weeks after the blood transfusion. 

More health problems arose during pregnancy
Zykeisha received iron infusions for her low hemoglobin count

When I got pregnant with my youngest son, I did the regular tests that they have you do at 6 months, such as the glucose test. They called me and said, “Your hemoglobin is really low, you need to see a hematologist. I said, “Okay.” I called and said, “My hemoglobin is at a 6 and I’m 6 months pregnant. They said, “You’re not coming here, honey. You want to go to the hospital.” 

I went, I was admitted, and they said, “Something is taking your blood, but we don’t know what it is and we can’t do extensive tests to find out.” They gave me the rundown on what was happening with the baby and so forth. They said, “We’re going to give you iron infusions.” Every time they gave me iron infusions, my hemoglobin kept dropping back again. They were like, something is going on. 

Describe your delivery and postpartum

Before you have any major surgery, your hemoglobin has to be a certain number. Mine dropped right before my due date. Prior to then they were trying to take him early and I said, “Nope, his birthday is this date and that’s what it is.” When it came down to the actual day, I said, “Well, what are y’all going to do? Y’all can’t leave him in there, you have to take him.” 

They gave me all these antibiotics. They were really concerned about doing major surgery with your hemoglobin being low. I delivered the baby and nothing else was said about the hemoglobin being lost. Nothing. 

When I came home, I started noticing excruciating back pain. I was like, something is wrong with my back. I went to my primary doctor who had me do x-rays. She said, “Well, nothing’s wrong with your back. It may be the epidural.” Then my stomach was acting really weird. My stool had changed. When I would eat, I felt like I had diarrhea, but it wasn’t diarrhea. The doctor said, “You have irritable bowel syndrome” and gave me some pills for that. I didn’t know then about questioning the doctor more. 

Then one day at work, I went to urinate. I was not on my cycle or anything. I turned around and it looked like a massacre was all over the toilet, there was blood everywhere. I took a picture of it and cleaned it up. I was at work and it was in the afternoon. 

Zykeisha had a C-section despite low hemoglobin levels

Diagnosis

Symptoms worsened

I went to my doctor and I said, “This is what happened when I was at work, and it was the only time that this particular thing happened.” She said, maybe it’s hemorrhoids. It was always a, “Maybe it’s this, maybe it’s that” kind of thing. Mind you, for a whole year, I’m going to the doctor for the back pain and my stomach with my babies in tow because I’m like, something is not right. I thought, well, maybe it’s me. You start thinking, is it in my head? Am I really having this? Are these symptoms really that weird? 

It wasn’t until one morning that I was getting ready for work. I nursed my son as usual. Afterward, I had this really sharp pain under my right breast and I was like, that’s weird. I continued getting ready, and this is at 4:00 in the morning. I dropped him off as usual and went to work. I had to work a 16 hour shift that day. 

I was sitting there with my co-worker and I said, “I’m having this sharp pain.” It was getting sharper, deeper, and really fast. We were sitting there and going, “Maybe it’s your appendix, maybe it’s this, maybe it’s that, maybe it’s gas.” It was a variation of maybes. I said, “I’m going to go to urgent care on my lunch break and let them see what it is.” 

Zykeisha began to feel like her symptoms weren't as bad as she believed

You start thinking, is it in my head? Am I really having this? Are these symptoms really that weird?

I went and the urgent care physician said they do not have the equipment there to do any testing. I need to go to the emergency room because maybe I pulled a muscle or it’s gallstones. At that point, I was like, I’m not going to the emergency room for a pulled muscle. What if that’s just what it is? I have to work a 16 hour shift. I’m just going to go back to work. My supervisor told me, “Do not come back here without going to the emergency room first to see what is going on.” I was like, “But what if it’s a pulled muscle?” She said, “If it’s a pulled muscle, then at least it’s a pulled muscle and you know.”

Taking a trip to the E.R.

You don’t think that it’s anything huge. On my way to the E.R., I prayed. I said, “God, I’ve been praying that they don’t find anything. But today, God, I’m asking you, let them find out what it is because something is not right.” Everything just lined up. They took me in right away. I didn’t have to wait. 

They started giving me morphine because I couldn’t lay down at this point. I could not lay flat. The pain was so bad. I described it as a throbbing toothache in my stomach. They asked, “What does it feel like?” I said, “A throbbing toothache in my stomach.” 

They did an ultrasound and other tests. A lot of that was a blur. I remember the ultrasound and one of the tests came back. They asked, “Has anything come back about your liver, the tests or different things you’ve taken? Have you been going to the doctor?” I said no. He said, “Hmm. We found a mass on your liver, but don’t worry, it could be benign.” I said, okay. I never paid attention to what happened after that because they told me it was gallstones and that they’re going to remove my gallbladder in the morning. 

I was admitted to the hospital. But I never paid attention to the fact that I was admitted to the oncology floor. It was, someone who was close to me at the time. She said, “Do you know that they admitted you onto the oncology floor?” They had a suspicion and I did not know anything that whole night. 

Zykeisha was admitted to the hospital after masses were discovered on her liver
Unbeknownst to her, she was admitted to the oncology floor
Receiving a cancer diagnosis 

The next morning, right before surgery, the admitting physician walks in and says, “You have tumors and it’s colon cancer.” He just said it. He just walked in and said it. I was like, whoa. No one was with me. It was hard to process something like that because, in my mind, I didn’t think cancer. My thing is, I’ve been going to the doctor for a whole year. They never connected the actual dots. I went to the hematologist for the pregnancy, but no one said anything afterwards. They told me in the hospital that something is going on but we don’t know what it is and we can’t do the testing.

No one said after I delivered that baby, let’s talk about what’s been going on. Let’s talk about you weren’t supposed to have a C-section with your hemoglobin being at that level. No one spoke on it. It was really confusing. These are not like the best doctors or anything, because there are some phenomenal doctors out there. 

I do tell doctors now, “See me how you would want to be seen or how you want your loved ones seen.” Being a dispatcher, I don’t see names. I don’t see who we’re helping, but to all, I always try to go above and beyond. You don’t know when you may need help. 

How did you react to your diagnosis?

I thought it was a death sentence.

Zykeisha thought her diagnosis was a death sentence

No one expected this. The people that knew I was getting ready to have surgery cried. I had people that called me and I cried with them. At one point, I was comforting people like, “It’s going to be okay. It’s going to be okay.” 

All I could think about were my babies. I said, “God, why? Why are you taking me from my babies you just gave me?” That’s all I could think about. I thought it was a death sentence. It’s something that I wouldn’t wish on anyone to receive. Even if it’s expected, it still hurts to hear it. 

At that point, they did a colonoscopy and they said, based on the scans, that it was for sure colon cancer. They could not tell me the stage. I had to go see a specialist afterwards and I did not go right into surgery. 

»MORE: Reacting to a Cancer Diagnosis

Chemotherapy

Meeting with an oncologist

I met the first oncologist I had. I’ve only had two. The first one I had was all facts and evidence. Every question you asked him, he’d say, “Facts and evidence says this and facts and evidence says that.” He got to the point where he was unreachable. 

My insurance, I didn’t know, did not cover me getting treatment at the hospital that I was at. I would have to change [medical care] and that was the best change. God was all in the math for that. The oncologist that I have today [helped me] get in remission. He’s still my doctor. He’s just a phenomenal person and he cares about my life. 

Beginning chemotherapy
Zykeisha began aggressive chemo

He ordered that I start chemotherapy. I had to get 12 rounds of aggressive chemo. Aggressive chemo was something that I was not prepared for. The first oncologist told me, “You’re still going to be able to go to the gym. You’re going to be able to run around after the kids. You’re going to be able to do all these things.” Research showed that people do these things while going through treatment. 

Firstly, we were going to do 6 rounds of chemo and then surgery, but we ended up doing 8. Then I went back in for the last 4 afterwards. With colon cancer treatment, one of the drugs I had was Avastin

Before I did chemo, I had a cruise already booked for my sons and I. It was a birthday cruise for my oldest. I went on that cruise, came back, and started treatment. The same day that I came back, I had to get my port placed that morning, and I said, “This is it.” I found a video the other day that I didn’t know I recorded of my sister taking the bandage off of my port, and I said, “I’m going to keep this in for one year then we’re going to be done with this thing.”

What was your experience on chemotherapy?

Treatment was not what I expected. Nothing could have prepared me for what happened. I was so sick, treatment was hard, and it was depressing. I’m not going to lie, I dealt with depression in a different way. I always show up and smile like nothing is wrong, but this was different. I had to sit in it. 

I couldn’t be around people. This was before COVID. I was wearing masks and gloves before COVID. I’d get stares and my kids had to be careful around me. They had to go to daycare and school but had to watch out. 

Chemo was 46 hours total and I had to get the Neupogen shot after that. I didn’t know what Neupogen was. After a few rounds of my white blood cell count going down, they said, “We’re going to give you this Neupogen shot and it’s going to bring your cell count up.” I’m like, okay, cool. Let’s go.

Oh my God. That shot is traumatizing. I’m traumatized to this day from what it does. The bone pain is not mild. It always started at my neck like a heated rush. Then it felt like something was breaking my bones. It would go down my body, just breaking. It’s paralyzing pain. I felt like I couldn’t move or touch anything, just scream. 

»MORE: Chemotherapy FAQs & Patient Stories

Receiving liver surgery

I switched to the University of Miami where I met my surgeon. Before I started treatment, he said my liver was covered in masses. Only a small portion of it was clear, but the majority of it was covered. I knew that I would have to end up getting surgery. He told me that he considered it because of my age. If I was older, he would not recommend something like this. The liver is a huge surgery. I didn’t know how huge it was because it’s bloody, it’s all the above. 

Zykeisha had 70% of her liver removed

I did about 8 rounds of chemo and then it was time to go into surgery. Two weeks after I did chemo, they withheld the Avastin, but I did the other chemo. FOLFOX at first and then I went to FOLFIRI. I didn’t recover well enough but went straight into this huge surgery.

Before I started treatment, he said my liver was covered in masses. Only a small portion of it was clear.

I didn’t know how to speak up for myself or say, hey, wait a minute. Is what we’re doing a lot? The conversation when you’re dealing with the cancer world is, “We’re trying to save your life so we’re going to do this, this, this and this, and you just gotta deal.” 

I went into surgery. They put me to sleep really fast. I woke up from the surgery and I wasn’t sent to the ICU. I was sent to a regular room to be admitted. They said the surgery went fine. The conversation was to remove 60% of my liver but the surgeon removed 70% of my liver. That was the first time that I was diagnosed. I was diagnosed three times and that was the first. Mind you, this was in the era where colon cancer in a young woman was not the norm. This was in 2017. Now you’re starting to hear more about colon cancer in younger people. 

Relapse 

Was your cancer treatment successful? 

When I went back to my primary [care doctor] where this all started, he was so nervous. They said, “We would have never suspected this in a young, fertile woman.” I immediately became a case people were curious about. Wait a minute, you had stage 4 colon cance? I had it when I was pregnant. 

After that, I was told. “Hooray! You’re in remission.” After the surgery, I had to go back for what they called a clean-up chemo, just to make sure that there was no residual [cancer]. They kept saying, “Hooray, hooray, you are in remission.” I didn’t know how serious colon cancer is. There are other cancers where you can be stage 4 or 3, but they’re curable. Colon cancer is the second deadliest cancer, so it may not have been curable. I did not know that at that time. I was like, why are they so surprised that I made it? 

Colon cancer was not as common in young people when Zykeisha was diagnosed

This was in the era where colon cancer in a young woman was not the norm…Now you’re starting to hear more about colon cancer in younger people.

My oncologist said, “You’re in remission. This is good news. This is celebration time.” So I did what I love. I went on a 3 day cruise to celebrate that I’m still here. After the cruise, I said, “Let me live life a little.” I took my kids to go see snow in Baltimore. I was living life. 

Did you receive follow-up scans?

At the same time, I was having this pain on my right side. When I went to the surgeon and said, I’m in pain, he told me I should not be having pain still. “The surgery was a success,” is what he told me. He went on to say, jokingly, “Maybe it’s because you don’t want to go back to work.” I was really annoyed because I said, “I actually like my job. If I’m having pain, I’m having pain.” 

My mom is like a doctor without the degree. She researches everything. She would go with me to these appointments, so when he said that, she said, “How about we do a scan to find out why there’s still pain?” I said, “Yeah, let’s do a scan. Let’s find out what’s going on.” We did this scan and it sat on his desk for about a month or so, maybe longer. 

Experiencing cancer relapse

When I came back, I started getting all these phone calls. They called me back to back. The nurse said, “Hey, something showed up on the scan that you did back in December.” Now we’re in January. “The surgeon wants you to go see your oncologist.” I went to the appointment. Before I went to the appointment, I went on the the app to see my results to see why they’re calling me. “Nodule in the right lung has grown since August.” I said, what? 

Zykeisha underwent a relapse

Now I’m looking up nodules. I saw that it could be pneumonia, it could be this, it could be that. I believed it could be pneumonia because I had just left the E.R. after that scan. They told me I had pneumonia. The nurse practitioner confirmed it wasn’t pneumonia, it was indeed cancer. Now I was confused because I’d just left the emergency room and they didn’t say anything. They said, “Well, maybe they figured you already knew.”

I thought, this can’t be it. The surgeon did not speak to me. He did not deliver the news. I went to my oncologist. He was very caring, phenomenal, and the first words out of his mouth were, “I hate that you have to start the year off like this.” I went to see my oncologist, let’s just say on a Tuesday, and he already had chemo scheduled for me to start in 3 days or so. 

The nurse practitioner confirmed it wasn’t pneumonia, it was indeed cancer.

They had to do a PET scan to see where all the cancer was at. It was in my lung and it came back in my liver. Mind you, I just had surgery on my liver. Now the concern was, if we cut any more of my liver…There are so many concerns. Then the oncologist said, “Okay, before chemo, we’re going to do the surgery. We’re going to have the lung surgeon go in and remove that nodule.” He said the only way to get cancer out is to get it out, so let’s go there first. 

What was your next course of treatment?
Zykeisha received multiple surgeries

Right before the surgery – this is how you know your doctor is really thinking about you and really concerned – he calls and says, “You know what? I thought about it all night. I looked at your scans all night and I think it’s best to do chemo. Let chemo get as much out of it as it can, and then we’ll do the surgery.” Well, this time I knew what chemo was going to be like. I knew what to expect. I knew the biggest part was the neupogen shots. 

That chemo took away the cancer in my liver so they just had to remove the nodule from my lung. It was then that my oncologist told me my prognosis was a 15% [likelihood] of me making it through that, but it goes down every time you’re diagnosed. That was a very humbling moment because I have small babies. It puts a lot on you. It takes a toll. I did that, went into remission, rung the bell, I had a whole party, and I was good. 

Side Effects

Processing cancer complications

My oncologist told me my prognosis was a 15% [likelihood] of me making it through that.

Zykeisha's doctor did not give her a good prognosis

I went back to work and a friend’s husband had passed away from stage 3 colon cancer. I got to the point that I took a break from cancer completely. It wasn’t a [long break]. I just made up my mind, I’m not going to  scans. I’m not doing anything. I just don’t want more news. I’m done with cancer. She told me, “You’re going to those scans.” She made me go. 

I went to go get the results. This was the same week COVID happened, but this was a few days before the world shut down. I went to the doctor and we were talking like I was good. Then the doctor said, “There’s an area of concern.” I literally broke because it was that week that things happened between my ex-husband and I that I was hurt by and then the cancer. 

I was like, what is going on? I was trying to co-parent and all these things. I broke down. I think that was the biggest shock of my life. I just did not expect it. This time, it was more than just going right back to chemo again. I was diagnosed on Thursday and Tuesday I had to start chemo. He already had it planned out for me before I even got there. He’s such a phenomenal oncologist. I really do thank God for him. I said, “I’m just tired.” At that point, I was tired of life. I just didn’t know what to do. 

Did you have side effects on chemotherapy? 

I went to chemo. I would show up to chemo with my graphic t-shirts, light up shoes on, make up, and head wraps. This time he changed it to full fury. He said, “I don’t want the burns on your hands. I don’t want all these things. I’m gonna do full fury with you this time.” It was that chemo that took out my hair. The bone pain was crazy. Also, chemo brain. 

I had a lot of chemo in a short period of time. It wasn’t spaced out. It was almost 4 years back to back. People didn’t get it. People look at you and say, “There’s nothing wrong with you, you’re good, you’re together,” but there’s so much inside. 

Zykeisha shares her side effects from chemo
Zykeisha was on Avastin
Zykeisha was on FOLFIRI and FOLFOX

Also, my teeth. My teeth are a big thing for me now. I had braces when I first started chemo. I was told by the orthodontist and dentist that I would be fine, and I probably would have been fine that one time, but I had a second and third time. I still went to them and they were like, “Everything is going to be fine.” When they got ready to take the braces off, the enamel from my teeth started coming off with it. Little by little, my teeth just kept decaying and my dentist told me it was going to continue because at this point, the chemo had rotted my teeth. When he showed me an x-ray from me being there just one year before until that time, it looked completely [different]. I had just had all this dental work done. Dental is a big thing of it. 

There’s a lot in the mental and emotional side of it. I can honestly say I went to a deep, dark, place that this can take you to. At one point, I felt like I was trapped and could not get out. 

»MORE: Cancer Treatment Side Effects

Undergoing additional preventative surgeries
Zykeisha and her son

I had a phenomenal surgeon. I love him, he’s so honest. I had 4 major surgeries at one time. One was a full hysterectomy because I was told that in women the cancer tends to hide in their uterus. I spent about 10 days in the hospital. That was the minimum that they required. I don’t have a colostomy bag. They did not remove my entire colon. They removed 34 lymph nodes from my stomach, a lymph node near my left kidney, the full hysterectomy, and my gall bladder. I think that’s it. They would have kept me longer, but mind you, it was during COVID. My heart goes out to people who have to be in there longer. 

My last treatment was April 2021, and I’m just relieved. I started to see remission differently. Remission is a waiting period. They’re waiting for something to happen because they’re big on, after 5 years, I’ll celebrate with you. I had a phenomenal surgeon. He even said, “After 5 years, I’ll celebrate with you.”

Reflections

Zykeisha gives her advice to cancer patients

Whatever gives you peace while going through something like this, find that and protect that.

Do you have any advice for cancer patients?

I would say, be your own advocate for your health. Ask the questions. Do not feel scared to ask questions. Do not feel scared to try things. You have to be at peace with your own decisions at the end of the day. Some people are anti-chemo, some people are for it, and some people grew a garden and that’s how their cancer went away. Whatever it is, you have to make sure that you’re at peace with every part of it. 

»MORE: How To Be A Cancer Patient Advocate 

Don’t just take the first answer that’s given. Go research some more, ask the questions, and research more. One more thing, for me, my faith was a huge part of it. Mental and emotional, the way you go into this is huge. I always smile. I was told by a lot of nurses and doctors that because I smiled through it all, that that’s the reason why I made it. I’m not saying that you have to smile. That’s not my thing. I’m just saying, whatever gives you peace while going through something like this, find that and protect that.

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