“I have always been a person who loves adventure, travel, dance, and learning by exploring. I wasn’t the healthiest of children growing up, suffering from both asthma and Crohn’s disease, but I learned to adapt and refused to let my illnesses stop me from living a normal, active life. It was the summer of 2012 when my asthma had resolved and my Crohn’s had been in remission for quite some time. A year-and-a-half earlier, I had the cleanest colonoscopy ever. I was in the best shape of my life, doing Zumba five times a week, eating healthy, and overall, I felt great. However, over the next few months, I started to notice subtle changes. Weight loss I ascribed to all the exercise I was doing, but there were unexpected and alarming symptoms, like severe fatigue and blood in my stool.
While out of town for a friend’s bachelorette party, I noticed another unexplained symptom. When I ate, it felt as if something was getting stuck in me. Since I was so in tune with my body after dealing with Crohn’s since age 12, these symptoms were unusual for me. So, I scheduled an appointment with my gastroenterologist; she didn’t seem too alarmed. Instead of scheduling a colonoscopy right away, she had me drink Magnesium Citrate. This helps to clean you out, similar to that of a colonoscopy prep. This maneuver was designed to figure out if I had a bowel blockage. I had an uneventful abdominal X-ray and felt good for a day, but then the same symptoms recurred. Since that was alarming to her, the gastroenterologist scheduled a colonoscopy for a week later.
Honestly, I wasn’t thinking anything major was going on as I did my prep and went in for the procedure. I had previously undergone many colonoscopies, and they were routine. I vividly remember waking up from the procedure as the doctor said, ‘I found something unusual during the colonoscopy. I don’t know what it is. I don’t think it’s cancer, but we took some biopsies and should know in a few days.’ I had never heard the word cancer spoken by her before, and at that point, I had no idea I was at higher risk for developing colorectal cancer because I had Crohn’s disease. I thought it was a disease of elderly men.
Those next few days were a blur. Although I tried to keep myself distracted and busy, I could not escape what was coming my way. 2 days later, I got a call from my GI doctor to come into the office as soon as possible to discuss my biopsy results. The fact she called my cell while I was at work, during the middle of the afternoon, said it all. She didn’t even have to tell me. I knew I was about to go through the worst journey and biggest challenge of my life. I literally worked right across the street from her office in a cancer research lab. As I walked across the street, I was crying on the cell phone with my mother. The only word I could focus on was cancer. It was almost like I walked over in slow motion. I was physically there but mentally, I was a mess. I remember walking into the office, realizing my life was about to change forever.
As expected, I was told I had colorectal cancer and she thought it was stage 3. The words after that are muddled as my life flashed before my eyes. Memories of time from childhood and my teenage years and a few weeks ago with friends raced by. The only thing I could think was I was going to die. When I came back to reality, the doctor was telling me I should try to find an oncologist and surgeon as soon as possible because she felt my cancer was pretty aggressive. A moment I will never forget, as the doctor left the room and told me to take all the time I needed, was when her nurse, who I knew quite well, came in and gave me a huge hug and put something in my hand. She had a pink breast cancer awareness watch on. She had taken it off and given it.
I worked in a cancer research lab. I was only 32. I never imagined cancer would happen to me. At that moment, as I walked out of the office to meet a friend to drive me to my parents’ house, a fire ignited in me. I knew then I needed to do anything and everything to find an optimal medical team to rid me of this cancer. My friend drove me home and my mom, a breast cancer survivor herself, grabbed me and held me as we cried together.
I was luckier than many people because I worked in Houston in the Texas Medical Center. There were many cancer specialists and treatment options available. So I asked friends, colleagues, and my father (who is a physician) for recommendations. Unbeknownst to me, one of my best friends from high school told me about a mutual friend that had just gone through colorectal cancer treatment. I reached out to her to help me process my immediate predicament, and also get her advice. I was also lucky someone who had worked in my research lab was working in colon cancer and the GI department at MD Anderson, and another former college was working in Radiology/Oncology. They both provided priceless advice. All the hospitals and oncologists with whom I consulted were amazing, but it was one thing that made me choose my ultimate path.
That oncologist said, ‘Allison, you are young. I don’t want you to feel like you’re just a number. I want to make sure you understand I am caring for you and you only. When I’m looking at your chart and treatment plan, it’s for you. I won’t let you get lost in the cracks.’ In these big institutions and cancer centers, you do get a medical record number. It is so easy to feel like you’re just one in a million people being treated there. But knowing he wanted to make sure I would not get lost in the cracks was reassuring. That’s why I went to that oncologist and got my treatment at MD Anderson.
So I began my cancer journey. The Standard of care for someone with my diagnosis was 5-and-a-half weeks of combination chemotherapy and radiation, a break to let the body heal, then surgery, followed by more chemotherapy. Surgery could encompass a range of things, depending on what they found inside. My 13 cm tumor was located at the bottom part of my colon going into my rectal area, a difficult spot to access. A week after my diagnosis, in June of 2012, I started my radiation and chemo. At that point, I was functioning on faith, not even knowing if treatment was working. It wasn’t until my first open abdominal surgery, in September, they realized the lymph nodes were not involved, only inflamed. As there was no evidence of metastatic spread, my cancer — originally thought was Stage 3 — was downgraded to 2C. I learned then to celebrate little victories.
My chemotherapy was not easy but it was easier than others. Though I had some side effects, the pills were not as severe as some intravenous regimens. I experienced neuropathy, lack of energy, nausea, and weight loss. At my lowest point, I weighed only 80 pounds and had no appetite. The radiation got so bad I was wearing adult diapers because toward the end of radiotherapy, it is very hard to control your bowels. The radiation also causes your skin to burn. Since my lower colon and rectal area were being irradiated, certain areas got red, irritated, and blistered. At one point I felt like a kid again because I could no longer take care of myself and had to move in with my parents.
After surviving chemoradiation, it was time for surgery. The night before surgery was one of the most emotional moments as my parents and I sat on the floor filling out my medical directive and last will and testament. It’s the little things that can really get to you, like deciding who would take care of my pet cat if I didn’t survive. It ended up being a 14-hour operation. Every few hours, they would go out and update my parents who, in turn, would email my three siblings, friends, and co-workers.
I distinctly remember waking up in a holding room with pictures of Disney characters all around me. Apparently, that was the only room available! I awakened to extreme pain. There were tubes and drains all over. I remember seeing shiny surgical staples, and this foreign object attached to me, an ostomy bag. I was emotional, shocked, and did not recognize my own body. At that point, I was told they were able to create an internal J-pouch and I had a temporary ileostomy that would be reversed once I healed.
The day after surgery, a physical therapist came into my room and said, ‘Allison, it’s time to get up. The sooner you get up, the sooner you can get your NG-tube out, the sooner we can get this drain out and the sooner you go home.’ Those words both encouraged and drove me to force myself to sit up, get out of bed and start to walk, clutching my IV pole for support. I think I was the youngest person on that floor, and seeing the older patients walking and improving motivated me to do the same! Eventually, I was discharged home, and the recovery continued. Friends and family came over and we’d go for small neighborhood walks. Being patient with yourself and your body is really important. Once I was better enough I started the final chemotherapy again.
Unfortunately, I continued to experience a number of complications and was in and out of the hospital multiple times. I almost died of sepsis on three separate occasions and had to undergo several more major surgical interventions. That ileostomy? It became permanent. I had to overcome body image issues, change my diet drastically, and become acquainted with an entirely new lifestyle. With help from a group of amazing young adult survivors, I named my ileostomy ‘Fill’ and realized years later that, without an ostomy, I would not be alive today sharing my story.
I want to talk about a few challenges I faced along the journey and many of these make me very emotional still years later. Another piece of the puzzle is, and we didn’t necessarily talk about it because sometimes it fits with people’s treatment plans, but with a younger population, I had the option to freeze my eggs at the very beginning of my treatment. But then I got very, very sick. That option went away. I had to ask for that because there wasn’t a fertility specialist at the time at my hospital. I’m a very big advocate, and people ask me, ‘Should I do this or that?’ No matter what age you are, you still want to have a quality life after you’ve gone through all this treatment. If that means you want to have a family, you have to explore all of your family-building options before you start this long, arduous journey. For some people, it’s not that long, but for others, it lasts for a very long time. Now, at this point in my life, I’ve looked into fostering to adopt, and other options and I will have a family one day. It is just not going to be genetic.
Cancer drastically changes everything. Even when starting on the cancer journey, it is important to envision what you want your life to look like. Do you want to have a family? If so, and you are a younger female, fertility preservation or freezing eggs beforehand might be in order. What job really makes you happy? You might not be able to return to your prior occupation. Through my convoluted journey, I realized a new mission in life: to help others and spread awareness about preventable cancers to communities people often forget about.
In my free time, I volunteer. I am a part of the Ostomy Support team at MD Anderson, Never Too Young Advisory Board with the Colon Cancer Alliance, and am the Chair of the Houston ‘Get Your Rear in Gear 5K’ with the Colon Cancer Coalition. I am the co-chair of the Cancer Alliance of Texas Screening and Early Detection workgroup. I have had opportunities with the National Coalition for Cancer Survivorship, Fight Colorectal Cancer, and the American Cancer Society Action Network to speak with politicians on Capitol Hill and testify at our state capital about various patient-centered initiatives.
My passion for volunteering turned into a personal mission, and every day I can help someone endure the struggles inherent to a cancer journey gives me a wonderful sense of accomplishment. Take care of your mental health; it’s not a sign of weakness to have psychological help along the way. Realize that relationships get tested a lot during a cancer journey. Some people I thought would be there to support me disappeared. Conversely, some people totally stepped up. My dad was by my side every night after I had surgery and most nights during subsequent hospitalizations. My mom was a rock of optimistic support, accompanying me to almost every appointment. The friends who were there for me are still in my life, but a lot of my best friends now are fellow cancer survivors. Those people understand like nobody else.
Lastly, remember you are not alone. Reach out to people like you for guidance and support. People will help you throughout your journey. It’s also important to take your cancer journey one day at a time. Nobody’s journey is the same, so what you might struggle with, someone else might not struggle with, but no matter how hard it gets, you’re never alone.”
This story was submitted to Love What Matters by Allison Rosen from Houston, Texas. You can follow their journey on Instagram, Facebook, and Twitter. 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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