February 21, 2025
CHRONICLE
Volume 11.
Colontown, USA
Free
How my COLONTOWN community helped me handle the cancer storm.
During the Summer of 2023, I was 45 years old and living my best life. I was a full-time compliance officer and a part-time group fitness instructor. My husband and I had been living the keto life for about a year at that time and we both had experienced tremendous success – he had lost 50 lbs, and I had lost about 95 lbs. Although we were following the exact same diet to the t, I attributed my increased weight loss due to the fact that I was teaching fitness classes 3x a week, whereas he was sedentary.
I was so very happy with my weight loss, but I told myself that my lack of energy and thinning hair was all due to not getting the appropriate amount of vitamins and even calories with our very restrictive keto regiment.
I developed a “stitch” in my right side and it was more annoying than painful. I figured the dog had either pulled me too hard, or I had gone a bit too hard in one of my classes. After a few weeks of it not resolving itself, I had self diagnosed myself with the help of WebMD and was convinced I was going to need to have my appendix taken out. I made an appointment with my doctor and when I went, I packed my deodorant, toothbrush and toothpaste and phone charger in my bag, just in case they admitted me for a ruptured appendix when I got there.
After a battery of serious questions from my doctor, her voice getting lower and softer with each question, she said that she wanted me to schedule me for labs and a CT scan immediately. I said, “You don’t think this is my appendix, do you?” She said, “No.” I said my voice cracking, “Do you think it’s cancer?” She replied, “Yes. We at least need to rule it out before we go any further.” That was a regular day of the week in the middle of May. By the end of May, the meteorite had burst through the atmosphere, exploded and upended every aspect of my life.
The first weeks were a blur, or as people in COLONTOWN refer to it as, “the storm.” I remember researching everything I could get my hands on, and my computer had a kajillion tabs open at once, filling up my notebook with 452 questions that I would take to the initial meeting I had scheduled with an oncologist through my local hospital system. One of the things I had read online was a success story from a beautiful young woman named Alexa Morell. And I also found a YouTube video, featuring her on a panel. My husband and I watched the panel discussion one night as we ate dinner. As a total side note, she mentioned “COLONTOWN” as a good resource, and as we sat at the kitchen counter and finished our dinner, I looked up COLONTOWN and requested to join the online community.
Fast foward to the initial meeting with the local oncologist. It was horrible. Not only did he not let me get through all of my questions, but he stopped me abruptly after the first few minutes of the meeting. He said, “You keep asking about surgical interventions…you are not going to be a surgical candidate…there is too much spread. You need to attack this systemically, with
chemotherapy. And it will likely be chemo for the rest of your life. Stage IV colon cancer with metastases to the liver, such as yours, has a 2-3 year life expectancy. Given your age, lack of comorbidities, and good health apart from this, you’ll probably make it to the outer range.”
Needless to say, we were shocked. We walked out of there, hand-in-hand, in silence. My husband had the brilliant idea of walking across the hospital campus to the Medical Records Office to request a copy of my scans. How he knew to do this, I have no idea. When we got in the car, I logged onto Facebook and pulled up the COLONTOWN page and wrote my first-ever post. I explained what had happened and basically asked the question out into the void, “What am I supposed to do now?”
It took us 45 minutes to drive back home and by the time we pulled into our driveway, I had over 50 comments from fellow patients. Their stories were so very similar to mine. So many of their initial meetings had gone the same way. But the common thread through most of the comments was “Get a second opinion…go to a NCI.” And that evening, I started researching the closest NCI to me. So, I really do credit Alexa Morell. She led me to COLONTOWN, and COLONTOWN led me to Memorial Sloan Kettering.
During the Summer of 2023, I was 45 years old and living my best life. I was a full-time compliance officer and a part-time group fitness instructor. My husband and I had been living the keto life for about a year at that time and we both had experienced tremendous success – he had lost 50 lbs, and I had lost about 95 lbs. Although we were following the exact same diet to the T, I attributed my increased weight loss due to the fact that I was teaching fitness classes 3x a week, whereas he was sedentary.
I was so very happy with my weight loss, but I told myself that my lack of energy and thinning hair was all due to not getting the appropriate amount of vitamins and even calories with our very restrictive keto regiment.
I developed a “stitch” in my right side and it was more annoying than painful. I figured the dog had either pulled me too hard, or I had gone a bit too hard in one of my classes. After a few weeks of it not resolving itself, I had self diagnosed myself with the help of WebMD and was convinced I was going to need to have my appendix taken out. I made an appointment with my doctor and when I went, I packed my deodorant, toothbrush and toothpaste and phone charger in my bag, just in case they admitted me for a ruptured appendix when I got there.
After a battery of serious questions from my doctor, her voice getting lower and softer with each question, she said that she wanted me to schedule me for labs and a CT scan immediately. I said, “You don’t think this is my appendix, do you?” She said, “No.” I said my voice cracking, “Do you think it’s cancer?” She replied, “Yes. We at least need to rule it out before we go any further.” That was a regular day of the week in the middle of May. By the end of May, the meteorite had burst through the atmosphere, exploded and upended every aspect of my life.
The first weeks were a blur, or as people in COLONTOWN refer to it as, “the storm.” I remember researching everything I could get my hands on, and my computer had a kajillion tabs open at once, filling up my notebook with 452 questions that I would take to the initial meeting I had scheduled with an oncologist through my local hospital system. One of the things I had read online was a success story from a beautiful young woman named Alexa Morell. And I also found a YouTube video, featuring her on a panel. My husband and I watched the panel discussion one night as we ate dinner. As a total side note, she mentioned “COLONTOWN” as a good resource, and as we sat at the kitchen counter and finished our dinner, I looked up COLONTOWN and requested to join the online community.
Fast foward to the initial meeting with the local oncologist. It was horrible. Not only did he not let me get through all of my questions, but he stopped me abruptly after the first few minutes of the meeting. He said, “You keep asking about surgical interventions…you are not going to be a surgical candidate…there is too much spread. You need to attack this systemically, with chemotherapy. And it will likely be chemo for the rest of your life. Stage IV colon cancer with metastases to the liver, such as yours, has a 2-3 year life expectancy. Given your age, lack of comorbidities, and good health apart from this, you’ll probably make it to the outer range.”
Needless to say, we were shocked. We walked out of there, hand-in-hand, in silence. My husband had the brilliant idea of walking across the hospital campus to the Medical Records Office to request a copy of my scans. How he knew to do this, I have no idea. When we got in the car, I logged onto Facebook and pulled up the COLONTOWN page and wrote my first-ever post. I explained what had happened and basically asked the question out into the void, “What am I supposed to do now?”
It took us 45 minutes to drive back home and by the time we pulled into our driveway, I had over 50 comments from fellow patients. Their stories were so very similar to mine. So many of their initial meetings had gone the same way. But the common thread through most of the comments was “Get a second opinion…go to a NCI.” And that evening, I started researching the closest NCI to me. So, I really do credit Alexa Morell. She led me to COLONTOWN, and COLONTOWN led me to Memorial Sloan Kettering.
These hometown heroes keep COLONTOWN safe, educated and connected to other patients and carepartners
Extra! Extra! Read all about it! Did you know that COLONTOWN is filled with local heroes? As we move into the new year, we want to highlight all the amazing ways our patients and carepartners give back. From the Knight of Knowledge to the Sensational Survivor, our superheroes help thousands of their neighbors find their people, research new treatment options, and advocate for their own care. Check here every month to see a new COLONTOWN Hero unmasked! Do you know a superhero in your neighborhood?
COLONTOWN Chronicle