Meet Sarah Parker – Stage 4 Colon Cancer Survivor
My name is Sarah Parker and I live in Maryland. At the age of 20, I married my high school sweetheart, Ryan. Together we have an amazing fur baby named Oliver.
In college, I obtained my bachelor’s degree in Business Administration with a minor in Finance. I then found a job I loved as an Assistant Payroll Clerk for a small construction company while my husband worked for the County Animal Shelter. We were saving up for the next chapter in our lives – to buy a home and start a family when my symptoms started.
The Onset of Symptoms
In February of 2017, I started having stomach pains. My bowel movements were irregular, I was exhausted all the time and I didn’t have much of an appetite. I didn’t think much of it, but over the next couple months, it started to progress.
Soon, I began having stomach cramps and I was unable to keep any food down. I lost a significant amount of weight and was tired all the time and didn’t have any energy.
In May of 2017, I went to my local Emergency Room because I had diarrhea and couldn’t stop throwing up. There wasn’t much to throw up; it was mostly acid but I couldn’t stop. At the Emergency Room, they did bloodwork and didn’t find anything wrong. They gave me a Zofran to help with my nausea, diagnosed me with a urinary tract infection and released me. Leaving the hospital, I felt like it was more than a urinary tract infection so I followed up with my Primary Care Physician.
Normal Bloodwork and Stool Samples
My doctor ordered more bloodwork and suggested I start on a bland diet – rice, crackers, water, etc. The bloodwork came back normal, so she wanted to collect a stool sample. The stool sample also came back as normal.
By this point, I had lost more weight and energy. I had night sweats and fever like symptoms. My stomach would cramp if I sat too long and I would have to lay down with a heating pad to relieve the pain. Then, on June 21, 2017, my doctor ordered a CT Scan with Contrast.
CT Scan WITH Contrast
The morning of June 22, 2017, I woke up and I just felt off, more so than before. I went to work and I got a call at lunch time from my doctor. She said that they got the results back from the CT scan and she wanted me to come in the following day to meet with a gastroenterologist and told me to bring support, it looks like cancer.
I dropped the phone and instantly broke down into tears. The word that NO ONE ever wants to hear. My cousin worked with me and came running to see what was going on. She finished the phone call with my doctor and called my mom to pick me up to take me home.
I was numb – nothing made sense. The first thing I did was call my husband and ask him to come home. I didn’t know what to do or think, we just had to wait and I knew I needed to be with my people.
Meeting with Gastroenterologist
June 23, 2017 – I meet with the gastroenterologist to get the news.
The CT scan showed:
“Multiple solid liver lesions are suspicious for metastatic disease; cecum and ascending colon are incompletely visualized and incompletely opacified. Mass like lesion in this area suspected”
From what I understood – I had a mass in my colon and it has metastasized to my liver. I would later search the internet discover that I had Stage 4 Colon Cancer. Before I could meet with an oncologist or get a plan together, we had to do more testing.
The Following Weeks
The following 2 weeks were a blur. I felt like I was going through the motions but I wasn’t actually there – as if I were on auto pilot watching my life from the outside.
They did more bloodwork – this time they wanted to check my liver functions and for Hepatitis. Additionally, my doctors ordered a Carcinoembryonic Antigen (CEA). This can be used as an indicator for Colon Cancer for some individuals. The normal range was 0-5.6. My results were 228.
I had a colonoscopy and the doctor was 99% sure that it was colon cancer – they sent the sample off to confirm. I also had a liver biopsy done and that too was sent off to be confirmed.
I then received a PET Scan to determine if the cancer had metastasized to any other places in my body.
July 2017- I have all the results from my tests:
“Large Apple Core mass of cecum, consistent with primary malignancy with tumor extension involvement of appendix, locoregional, retroperitoneal and pelvic adenopathy, hepatic metastasis, omental metastasis and likely ovarian metastasis/Krukenberg tumor at least on the right”
Liver Biopsy: “Metastatic moderately differentiated adenocarcinoma with necrosis”
There it was – the reason for all of my symptoms and pain – Stage 4 colon cancer that had spread to my liver, appendix, abdomen wall, abdomen lining, gallbladder, and right ovary.
9 Months to Live
I didn’t fully accept my diagnosis until I remember asking my oncologist if I would ever have children and his answer was, “I am not sure if you have 9 months to live, it would be selfish to get pregnant.” That is when it hit me that my prognosis was 9 months with chemotherapy, if I were lucky.
To be 24 years old and have had no family history of colon cancer…to look at the ones I love and see their fear…to look at Ryan, my heart in human form and see his pain. I didn’t know what to do, but I knew that giving up was NOT an option.
Trusting the Wrong Doctor
Everything was so confusing to me. The beginning of treatment was far from easy. I had trusted the doctors to do what was right, and that was a mistake.
I had to get a port placed in my chest for chemotherapy. A port is a device used to draw blood and give treatments, it is attached to a catheter (a thin, flexible tube) that is threaded into a large vein above the right side of the heart called the superior vena cava. The doctor who placed my first port did it in his office – it was hot in the room, with a fan circulating.
He didn’t use enough numbing medicine or put me to sleep during the procedure. He placed the port into my vein and I screamed in agonizing pain; so loud that my mom could hear me from the waiting area. It was like nothing I had ever felt before. But I thought it was how it was supposed to be. I didn’t know anything about ports or cancer and trusted the doctor.
Problems with Port
I then received my first chemotherapy – my port never healed. The incision was an open wound and the oncologist couldn’t get a blood return from the port but they proceeded to give me chemotherapy anyway.
My first chemotherapy consisted of Folfoxiri plus Avastin (5-Fluorouracil for 48 hours with a take home pump filled with Irinotecan, Oxaliplatin, Levoieucovorin, and Avastin). The nurse did not flush between chemo medicines and when I had to get the Oxaliplatin, she accelerated the drip so I could be done faster. I got so nauseous, my legs were spazzing and I got really sweaty; I had diarrhea and I was exhausted.
I left my first chemo treatment and remember thinking, I am not going to make it. This is the end for me. I wanted to quit. But I knew I had to see it through.
Once at home, I had night sweats with fever-like symptoms, I couldn’t eat, I couldn’t stand, I could barely sit up. The diarrhea I had was so bad that brought me to tears with the cramping and I couldn’t sleep.
Lack of Empathy
After 48 hours, I had to return to the office to have the pump removed. The pain was excruciating and I could barely move. Two weeks after my first treatment, I had lost 20 pounds and all the doctor said was that “you are robust; it’s fine.”
I did two more chemo treatments at that oncologist’s office and voiced my concerns about the side effects. The only response I got was, “it’s just the chemo.”
A Visit To The ER
Until one night, I had lock jaw and thrush so bad, I couldn’t swallow. So, I went to a different Emergency Room, where they informed me that my port was infected and misplaced. They also informed me that I should NOT have received chemotherapy if they couldn’t get a blood return.
A New Oncologist
Fortunately, I was able to find an amazing oncologist about an hour and a half from my home. The drives were long, but it was worth the trip.
The first thing they did was they remove my wrongly placed port and place a PICC Line for the chemotherapy. When I went to their infusion center for my first treatment, it was a completely difference experience! They flushed my medicine and gave me medicines to combat the side effects.
My NEW oncologist even came to visit before I left to see if I needed anything. He gave me magic mouthwash for the mouth sores and pain and preventative medicines to help with my diarrhea.
After about 2 chemo treatments, I had my PICC Line removed and new chemotherapy port placed correctly by a professional. This time, I didn’t feel anything. It was a simple procedure and allowed me to receive the chemotherapy through my port. My new port got a blood return and closed properly.
I had a total of 5 Folfoxiri plus Avastin treatments. And then I had 4 Folfiri plus Avastin, which was the same except they removed the Oxaliplatin from my regimen to avoid permanent neuropathy.
After 9 rounds of chemotherapy, my oncologist scheduled a scan to see if the chemo helped. And that is when my story began to turn around – my oncologist couldn’t believe the results!
Results of Chemotherapy
The colon tumor was undetectable AND the cancer that was found on my appendix, abdomen wall, abdomen lining, gallbladder and right ovary were undetectable as well. I had a significant less amount of cancer on my liver and in my lymph nodes. The results were like nothing we could’ve imagined!
After three more rounds of chemotherapy, I got another scan. This time THERE WAS NO EVIDENCE OF DISEASE! They didn’t see any cancer on my scan!
I was in remission.
The Power of Hope
I had done the impossible – I survived! I had lost my hair, my self-esteem, my job, our savings, and a lot more, but what I never lost during my whole journey was HOPE. When things got tough, I had to get tougher.
Life After Cancer
I have been in remission for 3 years and 10 months (October 2021). I get regular CT scans to ensure the cancer hasn’t returned. The thing that most people don’t talk about is life after cancer.
The anxiety, depression and PTSD that comes from a cancer diagnosis and treatment is devastating. My gums and teeth were damaged from the medicine, I had insomnia and “survivor’s guilt” for making it when so many people I knew from my support group didn’t.
Additional side effects included muscle cramps, weakness, burning feet and hands, diarrhea, and constipation. Certain smells and images may bring back the nausea and even fear.
Fatigue and exhaustion linger and it is difficult to move forward when I am still feeling the mental and physical pain from what I had been through. It took a long time to get my strength back, but I am starting to feel like myself again.
Be Your Own Advocate
The biggest things I can tell you from my experience is to be your biggest advocate. The rate of colon cancer in young adults are on the rise.
If something doesn’t feel right, speak up. I wouldn’t wish my initial surgeon and oncologist on anyone. If you aren’t receiving proper treatment, make some phone calls immediately and get the problem fixed.
It is important to know that cancer is hard and chemo is hard, but it doesn’t have to be that hard. It is about finding the right care with a doctor who listens to you and helps you.
The Way Forward
Because of this experience, I have found my calling in life. I started my own business that allows me to offer life insurance at reasonable rates to certain cancer patients. If their cancer is to progress, they are able to accelerate their benefits while living, which can help pay for alternative treatments.
My name is Sarah Parker and I am honored to share my story with you. I hope that it helped in some way.
Please feel free to contact Sarah at firstname.lastname@example.org for any questions.