Updated: Jul 21, 2019
Hello! As you may know, I'm Violet, and I have Stage IV Colorectal Cancer. I wanted to create a place where I can update others on my own health, and also share experiences to encourage others to get screened, but mostly to help expose others to the experience I am having, in hopes of normalizing it and making it more comfortable for all parties involved.
So what is it like to find out you have a giant tumor growing in your butt at the age of 31, and that it has also sent out little baby tumors to take over your liver and lungs? It is pretty fucked up. It may surprise you that this is becoming increasingly common. Did you know that my millennial ass is four times as likely to develop rectal cancer compared to my mother's baby boomer ass? People like me are popping up all over the globe, and no one knows why.
At the same time, advancements in care are allowing people like me, who are usually told at diagnosis that we have about a 10% chance of surviving 5 years, to live much longer. Some even reach what many of you like to call cured or remission, but that those of us in the cancer world understand should only be called no evidence of disease (NED), meaning our current imaging and diagnostic testing cannot detect cancer.
About two years ago, I had a major surgery in hopes of waking up to hear the words NED. Instead, I woke up to find out my cancer in my liver was more widespread than scans were showing, and I would go back to chemo in one month, likely until I die. I also woke up with a cute little thing called an ostomy, meaning I now go poop in a bag attached to my stomach. More on that little guy later.
So here I am today, about 50 rounds of chemotherapy deep, still alive. Sometimes I thrive and sometimes I survive. Oftentimes, I cry, in public. Throughout it all, I try to accept my reality and laugh when I can. It isn't pretty, but I like to think of it as a cute mess. I'd like to bring you with me.
Now that I have outlived my original prognosis, but also failed to reach NED, I'm finding very little resources exist for people like me. Programming is emerging (often unfortunately called Survivorship Programming), that supports people in their transition from cancer treatment to life after cancer. End of life programming also exists, but what happens when your end of life stage ends up stretching on for years and years? Currently, no support exists for that. And, if you remember what I said earlier about my butt and my mom's butt...that's going to be a problem. This population of unsupported butts is growing.
So what are we going to do about it? I don't really know. I'm just your average gal who happened to grow a tumor in her butt, but (teehee) I'd like my experience to at the very least, raise awareness about this gap in cancer survivorship support. I hope my stumbling and bumbling throughout this experience can provide some opportunities for this type of programming and support to develop. I also hope my experience can help normalize dying and reduce the shame many feel about having cancer. If you subscribe to this, you are probably going to watch me die.
Stay tuned for some adventures from Violet and her clowder of colorectal cancer catvocates: Zelda, Mai Tai, Meeko and Grandma Ogee. I'll write more about this later too, but when you are single, terminally ill, and poop out of your stomach, becoming a crazy cat lady is quite appealing. Unfollow now if you don’t want to hear about my catpanions