“It was a warm spring afternoon in April, and we were in the parking lot at The Home Depot when I got the call. The call you never want. It was the colorectal surgeon and she told me I had cancer. Actually, what she said was, ‘We got the pathology back from the biopsy and it is adenocarcinoma.’ I had never heard the word ‘adenocarcinoma’ before, so I asked her, ‘Does this mean it’s cancer?’ She simply said yes and then told me she would see me at my follow-up appointment the next day. And just like that, with a three-minute phone call, my life changed forever.
How did I even get here? I was young, 36 years old. I was healthy. I had no family history of colorectal cancer. Six months earlier, I had been to my primary doctor because of some pain I had been having occasionally after having bowel movements. To be honest, I thought it was just a pesky, internal hemorrhoid. My doctor thought it was a hemorrhoid, too. I had birthed three babies, after all, so it seemed to be the most likely thing, given my young age. But my primary doctor said she didn’t handle internal hemorrhoids, so she referred me to a gastroenterologist. The gastroenterologist then ended up referring me to a colorectal surgeon. Even after seeing three doctors over those six months, no one ever mentioned to me it could possibly be cancer. In fact, when we questioned the colorectal surgeon about the possibility of this being something serious like cancer, she said it was highly unlikely because I was so young. So, I didn’t worry about it. I mean, I was definitely the youngest person in her waiting room so I also thought I was too young.
Turns out, I wasn’t too young. It wasn’t a hemorrhoid. It was a tumor.
What happened over the next few weeks was a surreal experience. Life stopped for me… but at the same time, life kept going on around me. My husband, Chad, and I decided not to tell our daughters, who were only 10, 6, and 4 at the time, until we had more information and a game plan. Yes, we definitely needed a game plan. Because I was going to beat this. In my mind, there was no other option.
But we had so many questions: ‘How big was the tumor? Had the cancer spread? How treatable is colorectal cancer? What is the survival rate?’ There were so many unknowns. Even though we had all of these questions, I think Chad and I both just thought I would do chemo, kill all the cancer, and get back to life.
At my appointment with the colorectal surgeon the next day, however, my world was once again shaken. The doctor, who didn’t have a very good bedside manner, to say the least, simply said this type of cancer is treatable, but I would have to do radiation, have surgery, and then do chemo. She casually told us, ‘The surgery will leave you with a permanent colostomy bag.’ I had expected to need chemo. I even had thought I would possibly need radiation. But a colostomy bag? A bag attached to my stomach I would poop into? For the rest of my life? It just all seemed like too much. There had to be another option. This surgeon told us there was no other way to be sure to get all of the tumor out, since it was located so low in my rectum, except through surgery. She actually told us if they tried to just remove the tumor itself, I would have no control over my bowel movements anymore and I would simply soil myself. I couldn’t believe this pesky hemorrhoid pain was actually a tumor and meant I was going to need to have life-changing surgery.
I was numb. I suddenly wasn’t so sure I could survive this cancer. But I felt an urgency to start treatment and attack this cancer as soon as possible. We left the appointment with the colorectal surgeon and began a series of tests, scans, and appointments. I began the process of starting treatment — seeing a hematology oncologist and a radiation oncologist. These appointments were a blur of so much information: ‘Tattoos for radiation,’ ‘Instant menopause from the radiation,’ ‘Burns from radiation,’ ‘Five and a half weeks,’ ‘Chemo pills during radiation,’ ‘Surgery to place a port in your chest for intravenous chemo,’ ‘IV chemo for 16 weeks,’ ‘Chemo pack to wear 48 hours at home,’ ‘Every other week for 5 hours,’ ‘Nausea, fatigue, cold sensitivity, neuropathy, hand and foot sores, mouth sores,’ ‘long surgery,’ ‘long recovery,’ ‘stoma,’ ‘ostomy bag.’ To say I was overwhelmed is an understatement. I didn’t know how I was going to survive all of this and be left with a good life after, if I did survive.
My husband still wasn’t convinced this was the only way to attack this cancer. He thought there must be a way to get rid of the cancer without having to do surgery. He started researching, calling people, handling insurance. He became my personal advocate because I was barely functioning and getting out of bed each day. He got an appointment approved by insurance for a second opinion at a National Cancer Institute hospital. He knew this would be a better place for me to be treated, where they were educated in the most current colorectal cancer research and using the most current methods. Luckily I was able to quickly get in to see a new colorectal surgeon who said I qualified for a clinical trial. We finally had some hope!
Now, this wasn’t a clinical trial that involved a new drug, but it involved changing the standard of treatment for colorectal cancer patients in the hope of avoiding surgery. I would still do radiation first, but instead of having surgery, I would do chemo. Then we would scan and do blood work every three months to check the status of the tumor. Ideally, the tumor would be killed completely by the radiation and chemo, thus having no need for surgery. It was basically a ‘wait and watch’ method. I couldn’t sign up for this trial fast enough! We figured it was worth a shot, right? If this course of treatment didn’t work, then I would have the surgery.
I’m not going to lie, treatment was brutal. Radiation was the most painful thing I have ever been through physically. When they said radiation gives you burns, they weren’t joking. I had actual burns on my bum. And just when I was healing from that, chemo began. The nausea and fatigue from chemo seemed like it was going to last forever. I lost weight, I lost a ton of hair (even though they had told me I wouldn’t on this type of chemo), I was always dehydrated, my skin became flaky, and I developed neuropathy (numbness in my legs, feet, and hands). I also developed sores on my hands and feet.
I was mentally drained by this time as well. Some days I barely had the energy to move from my bed to the couch. I was also very paranoid about getting sick during this time because my white blood cell count was so low. But there were many good times during treatment too. Those days where I felt better and could enjoy spending time with my family were what got me through. I was reminded of the goodness and kindness of people in this world. I was blessed to have some amazing family and friends who brought us meals, drove my kids to school or activities, and who showered us with love.
After finally finishing chemo, I entered the monitoring phase with scans every 3 months. They were all clear! As the months went on, I was slowly healing and starting to feel better and better. Life even seemed to be getting back to normal. Then, one year after treatment ended, I had my annual colonoscopy. During this routine procedure, the doctor biopsied some tissue from the area where my tumor had been. Sadly, the results showed cancer cells still remained. I was devastated. I knew now I would be having surgery and getting a permanent colostomy. By now it had been almost two years since my initial diagnosis and I wasn’t as shocked this time to hear this news. I felt at peace with the upcoming surgery, I think, because I had had time to process everything. But to be honest, I was pretty angry. Angry there was still cancer in me and it hadn’t shown up on scans. I tried to focus on the positives which were that the cancer wasn’t anywhere else in my body and it was actually too small to even show up on scans yet.
Now I had to come to terms with the fact I would have a colostomy bag forever. I was extremely nervous. It was major surgery and I really didn’t know much about colostomies, only the stigmas around them. I had surgery on February 14, 2018. Yep, Valentine’s Day. It was an eight-hour-long surgery!
I got very lucky my surgery went smoothly and my recovery did as well. And the best news was all of the tissue surrounding my rectum and 33 lymph nodes they removed were clear! I was finally cancer-free! I found adjusting to a colostomy was a lot easier than I had expected. I can still do just about everything I did before surgery — I eat the same, exercise, swim, travel, work. It doesn’t smell either, which was something I was really concerned about. It’s easily concealed under my clothes. In fact, people don’t even know I have a colostomy bag unless I tell them.
I just had scans this past February and they were clear! I have hit the two-year mark of having no evidence of disease, which is a huge milestone. For colorectal cancer patients, you have the highest risk of recurrence during the first two years after diagnosis. I won’t be considered in remission until I hit the five-year mark. I don’t know if I will ever be able to say I was grateful for having cancer. I am forever changed by it. I am scarred by it, both physically and mentally.
Even today, I am still processing all I went through because, during treatment, I was only in survival mode. My life has adjusted to a new normal. I can say I am grateful for so many things that have happened in my life since being diagnosed. My family has had to learn to rely on each other. My girls have learned compassion for those who are ill or have struggles because of watching what I went through. I have been humbled and learned to accept help from others. I have learned each day is truly a gift and we should treat it as such. Sometimes I wonder why I was spared and am still here, but I try to focus on living a great life with the time I have been blessed with.”
This story was submitted to Love What Matters by Julie Monroe. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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