What a great run! As grueling as flying to Denver and back weekly was for two months, being off chemotherapy was really nice. I managed to stay on the study for a second cycle by the skin of my teeth; my scans following the first cycle showed everything had shrunk or stayed the same except for two 6mm ditzels.
The second cycle meant flying to Denver only every six weeks for injections and infusion. This was wonderful for my quality of life and, unfortunately, terrible for my poor liver. All the breast cancer that was beaten into sub-centimeter submission had blossomed and my liver was ensconced in a giant mass almost as large as the one initially found when I started this whole mess three years ago. Like I said, no regrets. I enjoyed six months of hair, recovering blood counts, exercise, and normalcy!
I started Ibrance (palbociclib) -- a brand new drug as of February -- with Femara (letrozole). The former (a kinase inhibitor) is taken for 21 days with, ideally, one week off, and the latter (an estrogen receptor inhibitor) is taken everyday. While on that first cycle, I think it had quite a stranglehold on these tumors. I was in a fair bit of pain that subsided once those 21 days were up. I also lost some hair, but just an all-over thinning. Now, the problem is that my bone marrow is completely beat up and not able to bounce back, so I have not restarted the second cycle of Ibrance. My platelets are low (71), so I have a lot of little bruises, and my absolute neutrophil count plummeted to 0.7. This means I could get a cut or scratch and have trouble healing and become infected.
Fortunately, I had eight shots of Neupogen tucked away in the cheese drawer of my fridge. Neupogen is a growth-factor injection that jump-starts your bone marrow to kick out some white blood cells. Unfortunately, it causes bone pain that feels like your rib cage and pelvic bones are attached to car battery and you're the one being jump-started. It's the weirdest vibratory pain and it makes me instinctively hold my breath in hopes it will stop.
I remembered when I was on Taxol years ago and I had remarkable blood counts, I was taking Turkey Tail Mushroom. I am tossing those back down again. I sure hope it isn't too late.
Speaking of too late, another young woman whom I'd "met" on Facebook has just died from metastatic breast cancer. After growing up in Iowa and working in arts and academia here in Chicago, Nicole was diagnosed with Stage IV breast cancer. She tossed that all away to move to New York and do stand-up about life with cancer (https://www.youtube.com/watch?v=jX6uQ4T-sdc) and it's just so good, especially to another formerly sexy young thing cut down by this terrible disease.
Prior to that, another woman who inspired me to keep exercising via her Stage IV Fitness Club message board on the breastcancer.org discussion groups has also died. She was an avid runner, living in Japan and France, looking for more young and active people like herself to see if it's possible to still be loving your body while hating what's going on inside of it.
The mystery to me is, at what point do you know you're about to die? They seem to be going along, doing okay, and then they disappear. That's the part that terrifies me.