When I began this blog nearly five years ago, it didn’t occur to me that I wouldn’t live to see the other side of my 60s. I come from a family with considerable longevity on both sides. Only one aunt on my mom’s side did not make to 70—and she missed by only a few months. But despite my genes, it appears increasingly likely that I will join her. Now I am back to blogging, partly as therapy for myself–a way to process what’s happening—and partly to inform and leave a contribution on what it’s like to live, and die, with a terminal illness. And, because there is so much misinformation out there about breast cancer, I’ll write about that, too.
In December of 2014, I was diagnosed with a recurrence of the early stage breast cancer I had in late 2010–the cancer that supposedly had a little more than a 10% chance of returning. I had no symptoms—the diagnosis came when my oncologist, on a routine 6 month visit and in the face of a normal mammogram, detected what seemed like an enlarged lymph node under my arm on the surgery side. I felt fine, but I was suddenly plunged back into the world of cancer—ultrasound, biopsy, CT and PET scans, an MRI, numerous blood tests, and a bone scan.
The news was not good—in addition to a couple of lymph nodes under my arm, the cancer had metastasized to my bones and some additional lymph nodes in my chest—but as my oncologist reassured me, it was not an immediate death sentence, either. When metastatic (or Stage IV) breast cancer is confined to the bones and lymph nodes, it is not curable, but can often be treated successfully for a number of years. My burden of disease was low, I felt fine and I was otherwise in excellent condition. I continued to work and to run, including completing four half marathons in the first eight months of my diagnosis. I had few side effects from my first line of therapy, other than some hair thinning.
Because I felt so well, I kept my diagnosis fairly quiet. A few close friends and family knew, but that was it. It helped me lead a more normal life, even though my new normal was coexisting with a terminal illness—kind of like living with a tiger that was tame and sleeping at the moment, but might wake up to pounce at any minute. Although the average life expectancy of a metastatic breast cancer patient is a little more than 2 years, there is considerable individual variation, and I thought I had a good chance of being one of those people on the long end of the statistical tail.
Sadly, it is increasingly evident that this is not to be. The first line of treatment gave me only a little more than 5 months before the cancer started growing again—and the second one even less than that. At the end of last year, scans showed that the cancer had also moved to my liver. A third treatment this winter has similarly failed, and now I’m on to a fourth, all in the space of about 15 months. By all measures, including sophisticated testing of genomic mutations, the treatments should have worked for longer than they did. But research dollars for metastatic disease are woefully inadequate, so scientists don’t yet understand why some people respond to certain treatments—sometimes for years– and others don’t.
In the past few months, I have realized that there is a lot I have to say about this whole chain of developments, an unexpected deviation in the road of my seventh decade. So I have decided to go public. If you’re up for it–and I realize many may not be– join me on this adventure into the unknown. I’ll write for as long as I can about both living and dying.