August 26, 2002, was a defining day for me. This was the day that I was told after a colonoscopy that I had cancer. “Well,” the GI doc said, upon entering the room where they had me sitting, “..I’ve got good news and bad news. The good news is that you aren’t going to have to wear a bag.” She didn’t tell me that I was later to have a “baby”!!
What ensued almost immediately for me was a blur of phone calls, appointments with all kinds of physicians, acquaintance with new screening machinery (I had never before had a CT scan), the saddened demeanors with most everyone in my network, and a bunch of great food delivered to my door.
Well, somehow, I got through all of that: major surgery (successful), six months of debilitating chemo, divorce, moving, bankruptcy, and my own personal re-start with LIFE. Today I have much less of a colon, but what I have left actually works better! My spleen was removed at surgery because there was fear of metastasis at the initial time of cancer discovery. In ten years I’ve had no problems with being “spleenless”! As we say in our Cancer World, I’ve been “dancing with NED” (“no evidence of disease”) ever since……..knock wood!!!
But I’ve had that “baby” since then. After several years of having no experienced friends with whom to chat this ordeal over, I delivered on a promise that I had made to myself. I would do my utmost to make a difference for others as they go through this terrifying journey with intestinal disease. We would no longer need to feel alone as we suffered through this, if I had my way! The taboo against “talking COLON” was going to be broken! I would make the COLON conversation fun, if not GLAMOUROUS!
My new baby’s name is COLONTOWN. We are a thriving, TALKING, bunch of folks who’ve been touched in some way by intestinal disease, including – of course - colon cancer. Our ongoing conversation can be found both online (Facebook) and locally (face-to-face support groups). COLONTOWN is very unique in that we’ve created sub-categories or “neighborhoods” that better aggregate our COLONITES by their disease, treatment, or disease stage: LYNCHVILLE, FAPWORLD, RECTALBURGH, IV CORNERS, STOMA CITY and IBD ALLEY. The preceding are all neighborhoods, but we also have the COLONTOWN WOMAN’S CLUB, and MERLIN’S MAGICAL EMPORIUM, our “country store”. We do, too, have a “suburb”: ANALWISE (anal cancers). Our citizenry can find their neighborhood or favorite place and just chat away.
And they do!!! And I’m so proud of my baby!
erika hanson brown, mayor
the home of compassionate survivorship
Are you at Risk For Colorectal Cancer?
- 2nd leading cause of cancer deaths for men and women combined
- Colonoscopies not only discover cancer, but can also stop cancer
- 50% of Americans still do not get colonoscopy reimbursement
- Colon cancer research is still vastly under-funded