July 19, 2020
Yesterday was the one year mark of knowing I am living with metastatic breast cancer. The reality is I've had it longer than a year, probably close to 2 years. I could not help but think about how the day evolved last year. My appointment would be just me and I'd get the results of my PET scan. I think in some place, way back in my mind, I knew what they were going to tell me. I went for a walk that morning and held back tears and told myself over and over "It will be ok, it has not spread." I felt like I couldn't make myself believe it.
And here we are - here I am - a year later.
In retrospect, the first month was the most terrifying and the first three months the most scary. Not knowing if the medication would stop the progression of cancer, not knowing how bad the side effects would be, not knowing the terminology and lingo used to describe metastatic breast cancer, not knowing how the girls would react to the news. It was all so overwhelming. I couldn't sleep, Glen couldn't sleep. The girls had terrible dreams. It was a nightmare.
It is still overwhelming, just not 24 hours a day. It's still a nightmare, but one that we are all able to compartmentalize because of how my body has responded to the treatment so far. Roughly once a day I break down. I allow myself 5 minutes to cry or be sad or whatever. Then I pull myself together and get on with my day. I channel Elizabeth Taylor: "Pour yourself a drink, put on some lipstick, and pull yourself together." So, the drink part often doesn't happen, I do have a day job.
The statistics of MBC survival are not great. The "official" ones are terrible. This being said, I truly don't believe the official ones are accurate. It's still a bit of a mystery to me (because I haven't had time to research it yet) how they come up with the survival rate. There is no database of people living with MBC. My understanding is that they count survival time after someone passes. There are more treatments now, like Ibrance and other CDK 4/6 inhibitors, that are extending survival times and quality of life. I need to dig deeper; I think there will be an extension of that survival rate based on this alone. All this being said, it's depressing that there are over 150,000 individuals in the U.S. alone living with metastatic breast cancer. Over 115 people will die each day this year because of MBC.
I don't think I'm officially counted as an MBC patient. This article from 2017 from the National Cancer Institute says it very plainly, if you have a recurrence of breast cancer, like I did, and it is metastatic, you are not counted in the statistics. "These findings make clear that the majority of MBC patients, those who are diagnosed with non-metastatic cancer but progress to distant disease, have never been properly documented."
I love science, but we need to get our act together and have a coordinated effort to figure this all out. Obviously I'm concerned most about breast cancer, this applies to all cancer though. This makes me think about the entire process of science and research, but I can see that would be another post.