April 13, 2024

CHRONICLE

Volume 4.
Colontown, USA

Free

MEET ANN, OUR SOLUTION SEEKER

Solution Seeker Ann has a knack for seeing a need and proposing a solution

In November 2018, I was getting my first colonoscopy with 100% confidence that I did not have cancer. When I woke up, the surgeon said that she found a mass and could not complete the procedure and I needed to have it removed ASAP. It still did not register that it was cancer.

   Why? Well, in early October 2018, less than a week before I was to have my first colonoscopy, I was not feeling well. My stomach was bloated and I couldn’t bend over. After a couple of days, I had a very sharp pain in my lower left abdomen that caused me to double over. Although my husband was concerned, I assured him that I would be okay. Following a night of little sleep, my husband insisted that I go to the doctor. That sharp pain I had felt the night before was my colon perforating.

   An exploratory laparoscopy was performed which showed my colon was already healing closed. I was in the hospital for eight days and was scanned and prodded and received daily IV antibiotics to deal with the infection in my abdomen. The surgeon saw fibroids on my uterus and a couple of cysts on my liver but attributed the perforation to diverticulitis, since my tumor marker was “negative.”

   Upon release, I had to return to the hospital every day for three weeks to receive antibiotic infusions through a PICC line. So my colonoscopy was rescheduled to November 12, 2018, two days before my 51st birthday. After waking up to the news of the mass, the surgeon strongly encouraged me to have it removed ASAP. The fibroids on my uterus would be in the way of the partial colectomy so that needed to come out as well. The surgery was scheduled for November 14. The day before the surgery was overwhelming. The hospital called to discuss the usual preop details but I was confused when the nurse said that I would be having my ovaries and fallopian tubes removed, along with my uterus. Later that day, I had an appointment with the gynecologist who would perform the hysterectomy. When I asked about the hospital telling me that my ovaries and fallopian tubes would be removed, she said “now that we know it’s cancer” (complete shock), she thought I should reduce my risk of spread to nearby organs and remove them as well. While I was stunned, I said nothing. I thought my tumor marker was negative. Oh, how naïve I was in those early days. It turned out CEA is not a good indicator for me.

   From surgery to the beginning of chemo on December 26, was a blur of scans, liver biopsy, genetic testing, port placement. It was completely overwhelming and thankfully I had family with me at every appointment. Add to that having to tell family and friends about my diagnosis and I was a weepy mess.
By the time all of the testing was completed, I was stage 4A. Those two cysts on my liver were really liver metastases. The plan was to do 6 treatments of Folfox with Avastin, have a liver resection, and follow that up with 6 more treatments of Folfox with Avastin. And that is exactly what I did. My treatments were never delayed due to low numbers, although I did have to get the Granix shots after treatment #6, nor did I ever have a dose reduction.

   August 14, 2019 I rang the bell for my final chemo treatment and I had my final pump disconnection on August 16.
I celebrated my five-year survival in November 2023 by running a half marathon. My scans continue to be clear, but I don’t ever think I will ever feel confident that there will not be a recurrence. I never take for granted just how lucky I am to go from stage 4 to NED.

   I found COLONTOWN in late 2018. The people are amazing! In 2021, I was added as an admin in WINDY CITY CREW and soon joined the admin team of FLORA GARDEN. After attending an Empowered Patient Leader workshop in 2023, I proposed the idea of a neighborhood that explored tools for managing stress, such as yoga, breathwork, meditation, and qigong. ZEN DEN filled a gap in our emotional support we did not realize we needed. This year I accepted the role of Community Volunteer Coordinator. What an honor it is to support our volunteers! They are the reason COLONTOWN remains a wildly supportive community.

In November 2018, I was getting my first colonoscopy with 100% confidence that I did not have cancer. When I woke up, the surgeon said that she found a mass and could not complete the procedure and I needed to have it removed ASAP. It still did not register that it was cancer. Why? Well, in early October 2018, less than a week before I was to have my first colonoscopy, I was not feeling well. My stomach was bloated and I couldn’t bend over. After a couple of days, I had a very sharp pain in my lower left abdomen that caused me to double over. Although my husband was concerned, I assured him that I would be okay. Following a night of little sleep, my husband insisted that I go to the doctor. That sharp pain I had felt the night before was my colon perforating. An exploratory laparoscopy was performed which showed my colon was already healing closed. I was in the hospital for eight days and was scanned and prodded and received daily IV antibiotics to deal with the infection in my abdomen. The surgeon saw fibroids on my uterus and a couple of cysts on my liver but attributed the perforation to diverticulitis, since my tumor marker was “negative.” Upon release, I had to return to the hospital every day for three weeks to receive antibiotic infusions through a PICC line. So my colonoscopy was rescheduled to November 12, 2018, two days before my 51st birthday. After waking up to the news of the mass, the surgeon strongly encouraged me to have it removed ASAP. The fibroids on my uterus would be in the way of the partial colectomy so that needed to come out as well. The surgery was scheduled for November 14. The day before the surgery was overwhelming. The hospital called to discuss the usual preop details but I was confused when the nurse said that I would be having my ovaries and fallopian tubes removed, along with my uterus. Later that day, I had an appointment with the gynecologist that would perform the hysterectomy. When I asked about the hospital telling me that my ovaries and fallopian tubes would be removed, she said “now that we know it’s cancer” (complete shock), she thought I should reduce my risk of spread to nearby organs and remove them as well. While I was stunned, I said nothing. I thought my tumor marker was negative. Oh, how naïve I was in those early days. It turned out CEA is not a good indicator for me.

From surgery to the beginning of chemo on December 26, was a blur of scans, liver biopsy, genetic testing, port placement. It was completely overwhelming and thankfully I had family with me at every appointment. Add to that having to tell family and friends about my diagnosis and I was a weepy mess.

By the time all of the testing was completed, I was stage 4A. Those two cysts on my liver were really liver metastases. The plan was to do 6 treatments of Folfox with Avastin, have a liver resection, and follow that up with 6 more treatments of Folfox with Avastin. And that is exactly what I did. My treatments were never delayed due to low numbers, although I did have to get the Granix shots after treatment #6, nor did I ever have a dose reduction. August 14, 2019 I rang the bell for my final chemo treatment and I had my final pump disconnection on August 16.

I celebrated my five-year survival in November 2023 by running a half marathon. My scans continue to be clear, but I don’t ever think I will ever feel confident that there will not be a recurrence. I never take for granted just how lucky I am to go from stage 4 to NED.

I found COLONTOWN in late 2018. The people are amazing! In 2021, I was added as an admin in WINDY CITY CREW and soon joined the admin team of FLORA GARDEN. After attending an Empowered Patient Leader workshop in 2023, I proposed the idea of a neighborhood that explored tools for managing stress, such as yoga, breathwork, meditation, and qigong. ZEN DEN filled a gap in our emotional support we did not realize we needed. This year I accepted the role of Community Volunteer Coordinator. What an honor it is to support our volunteers! They are the reason COLONTOWN remains a wildly supportive community.

MEET MORE COLONTOWN HEROES

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