How does one begin writing about their own impending demise? I guess by putting pen to paper like everyone else. Or these days, put it on a blog. And now I have done so.
I’ve had this blog name for a couple of years and I even tried starting it once before, but a little too early I came to find out. What do I mean by too early? I wasn’t ready. I wasn’t there yet. I had a pretty bleak diagnosis, and I didn’t fully comprehend it yet.
I was diagnosed in October 2017 with de novo stage 4 metastatic prostate cancer. That’s a lot of words there, and I didn’t even use incurable or terminal, both of which apply.
Ok, “de novo.” I didn’t even know what this was for a good year and a half. I learned the term from some of my breast cancer friends on Twitter who used it in their bio. It essentially means cancer that is metastatic from the start. So I have only known metastatic stage 4 cancer. It’s not a great way to begin.
“Stage 4” typically means at minimum that the cancer has spread to distant locations in your body. It’s bad, generally incurable, and there is no stage 5. My entire skeleton is filled with mets. My spine is completely black on a bone scan, which means it’s jam packed with mets. I call it the metastatic highway. My arms, legs, and pelvis, not wanting to be left out, have a few as well.
“Metastatic” means cancer that has spread. In my case, it’s the same as “stage 4” described above.
“Prostate cancer” should be self-explanatory. My main tumor is in my prostate. It’s a common form of cancer for men. (The second most common, just behind skin cancer.) 95% of the time prostate cancer is curable. I’m in the not so lucky 5%. Mine is not curable because the cancer has spread outside of my prostate. (Metastases.) Treatments just extend my life.
One term I left out. “High volume.” This means exactly what it sounds like. Well, sort of. High volume means there are LOTS of mets. Innumerable. Too many to be counted. It has shaped the course of my treatment and lowered my overall survival. Not all stage 4 cancers are the same. Mine is the worst, though we can definitely say there is no best. There is no good cancer. None. Don’t let anybody fool you with that.
This is my story. It doesn’t mean yours will be anything like mine. I’m going to talk about the good, the bad, and the ugly, so be forewarned. I’m starting this blog now as I feel that I’ve made it through the easy part, and trust me, it’s all relative. I’m on my second-line treatment and I’m fairly certain the third-line is just around the corner.
I used to wonder what “we’re all out of options” meant. Now I know. For the most part, all treatments eventually fail. Or they may not work to begin with. And at some point I’ll make it through all possible treatments and clinical trials. And then I’m done. We’re all out of options.
Many people like to consider stage 4 cancer a “chronic illness.” My take is that as long as meds and treatments are working, then it is a bit like a chronic illness. But once they’re not working, then it’s game over. That’s why I don’t consider stage 4 cancer a chronic illness.
One thing stage 4 cancer requires is hope. Hope is a big thing. It’s what keeps you going. It’s what keeps you looking for the next clinical trial. It’s what makes life something you’re grateful for. It’s what I call, “When Hope is All You Have.” And it is.