This morning I watched the second episode of Cancer: The Emperor of All Maladies. This episode struck closer to home, as one of the main characters – Laurie – had bilateral breast cancer (although much more aggressive than mine). She had similar treatments – neo-adjuvant chemotherapy and a bilateral mastectomy. At the end of the episode, she talks about the pervasive haunting that is fear of recurrence. I’m glad I was able to watch it this morning. I watched the first episode later in the day yesterday, and it haunted my dreams for the first part of the night. Hopefully a morning viewing will give my brain all day to process, so that I am not bothered in my sleep.
I found it interesting to learn more about the history of breast cancer research – but also about how some of the different cancers are related. One of the things I do find a little frustrating with the film is that it keeps jumping back-and-forth in time. One minute you are in the 90s the next you are back in the 80s. It makes it hard to determine which innovations helped influence other innovations.
I didn’t know about the protests at Genentech. Learning about these things when you live in the area makes it that much more real. In some ways, I feel bad for not having cared at all about cancer (or breast cancer) when I was younger. It was never on my radar. In episode 2, they talk about 1 in 13 women … that statistic has now changed to 1 in 8 … but that is in part because women are living longer (someone in my blog network did an excellent post on this, but alas, I cannot find it – if you remember, please send me a link and I’ll put it here). I think about how far we have come in our protocols for clinical trials – and how some of the protocols needed for good science still cost lives. I also think about how much of a role privilege plays in gaining access to clinical trials.
I recall when I was first diagnosed that there was potential for me to be in a clinical trial – but alas, I did not qualify because I had bilateral disease – which meant I had multiple cancers. My participation would skew the results. In some ways I find myself constantly questioning – does this mean that I missed my chance at long term survival? What that clinical trial the one that would save me? Of course that is crazy thinking. Part of what haunts me is that two of my three cancers didn’t respond that well to chemotherapy. They didn’t grow, but they didn’t shrink either. I didn’t have the same amazing result that Laurie did. I had a pretty mixed result – with my primary tumor responding very well to chemo and the other two no so much. The reality is that as far as we know now, the current treatment that I received did what it needed to do. My prognosis is good. But alas, as with Laurie in the documentary, I am haunted by thoughts of recurrence … I’m just getting better and better at coping.