Sep 27, 2018 Latest post:
Jan 20, 2019
Welcome to my CaringBridge website. I thought this would be a good place to tell my story so far and my journey in the coming months/years.
For those of you that don't know my journey began in August of 2016 when I was diagnosed with Stage 1 breast cancer. I think the doctor was surprised by my reaction because I just kind of shrugged my shoulders. I knew at some point that I was going to get breast cancer - my mom, my aunt (twins) and both grandmothers all had it. It was found very early, about .7 mm - I couldn't even feel a lump. The Friday before Labor Day, I had a lumpectomy and in the middle of October had a re-incision surgery because my margins weren't clear. In November, I started radiation treatment and finished that in January 2017. Battle over, right? Little did I know, God/Mother Nature/the Universe had very different plans for me. Get ready for a long read and many Google searches...
Around May/June of 2017, I was having a little pain in my lower abdomen and frequent constipation. I went to see my gastroenterologist. I had a history with ulcerative colitis and IBS so I figured that was just what it was. She told me that it was probably just bowel inflammation, she'd do a colonoscopy and prescribe steroids. Having done many colonoscopies in my time, I was not eager to do another one (God, that prep fluid is awful). So I went to an acupuncturist and began receiving weekly acupuncture treatments. They worked! My pain was lessened (never completely went away) and I was going to the bathroom every day. Success! I continued to go to the acupuncturist once a week through November, when it came to where I couldn't afford to do it anymore. Soon after, the constipation came back and I started to notice that my stomach bloated out when I ate but not all the time and not with every food. So around February, I started to explore food sensitivities and allergies. When nothing major came up there and my stomach was bloating more frequently and the bloat was bigger, I went to a functional doctor in April. She had me try enzymes and they worked really well at keeping the bloating in check for about 2 weeks and then it started up again. It was now to a point where I was beginning to experience pain throughout my abdomen and the bloat was there all the time. I looked pregnant again! Fortunately, the functional doctor treated me like a team member instead of a patient and I was able to go to her and ask for an ultrasound and she wrote the order.
The abdominal ultrasound showed "free fluid" in my abdomen, known as ascites and I could tell by the way the tech said it and the look on her face that it wasn't good. The doctor received the report and called me on a Saturday morning so I knew I was in deep shit. She suggested I see my oncologist at Rex asap to get it checked out. The oncologist ordered a CT scan and because I couldn't wait for the doctor to call me with the results, I called the radiologist and had them email me the report. Result: metastatic peritoneal carcinomatosis. Next step: CT guided biopsy to the largest mass just inside my left pelvic bone. Result: metastatic adenocacarcinoma. Because we knew the cancer had metastasized, we had to find the primary source. Tumor markers showed pancreas, stomach or other upper GI. My onc's PA was the unfortunate one to make the call to me - they don't use the word terminal anymore, now it's "life limiting" and I had about 6 months with no hope of treatment. I next had a PET scan and my pancreas came up clear and my ovaries were clear so my onc thought it was in my stomach. Still pretty screwed on the life-limiting front. Next was the upper endoscopy to check my stomach. All clear! My onc was at a loss as to where we could look next so she sent me to a surgical oncologist at UNC. The surgical onc's path report disagreed with the Rex path report and its conclusion was low-grade appendiceal mucinous neoplasm (LAMN). In other words, appendix cancer. I went to get a second opinion at Duke and they concurred. Both doctors said cytoreductive surgery (CRS) otherwise known as debulking, combined with HIPEC treatment was my only hope.
Although I've been through so much already, the real tests are just beginning.
They say God doesn't give you any more than He thinks you can handle. I'm both flattered and pissed off at His perception of my strength. I'm doing my best.