Aristotle: the man who cornered the market of classification. Aristotle’s History of Animals classified organisms in relation to a hierarchical “Ladder of Life,” placing them according to complexity of structure and function so that higher organisms showed greater vitality and ability to move. This last month I haven’t felt much like a higher organism since I’m not feeling especially vital and my ability to move has been compromised. But I’m hanging on to my designation as a higher organism, dammit! This, too, shall pass and, besides, I can’t imagine Aristotle liking a quitter (he tutored Alexander the Great fer crissakes).
In all of the different points of views of breast cancer–stages, treatment, survivorship, or chronic end game–all exist in a weird disease hierarchy. Have you noticed?
When I was first diagnosed there was that odd feeling of joining a club. This was a fleeting thought, but it was a thought just the same: I’m pink now. Kind of in the mainstream and all. I can Walk for the Cure and be one of the survivors. That moment diluted quickly and I was kind of surprised that I even thought it. The surgeon told me that he thought treatment would be straightforward: hormonal therapy, lumpectomy, radiation. Greater than 80% of full recovery. If I didn’t do anything it could kill me, I was told, although I am being honest when I tell you that I didn’t give any thought as to how breast cancer kills you. And can I say that in a past life I was a nurse? How blinded I had become with the pink messaging. Cure! Survivor! Woot!
But still I did the research and endeavored to learn as much as I could. I was Stage II, Grade 3, ER+/PR+, HER2-. I was gonna be fine! It will be cured! Yay! To be honest, no one–absolutely no one–talked about metastasis as a possibility in either the short or long term. It was all about treatment and cure. A year from now this will be all behind me. I didn’t have metastatic breast cancer. You know, I had the good cancer.
Even when my oncologist wanted to do the PET/CT to stage the disease I didn’t worry. She wasn’t worried–or so she said. For her this was a routine part of her diagnostic toolkit. Both the surgeon and the oncologist were surprised. When I learned that I was Stage IV I was thrown for a loop. Good thing I read about it. The surgeon basically told me I was Stage IV, said he hated to be the one to tell me, and we said goodbye. (Not for nothing, but I’m sorry I had to be the one you told, asshat.)
And that’s when I became cognizant of the hierarchy of breast cancer. I became very aware that the fundraising discourse was largely about survivorship. A kind of sisterhood of baldness, chemo, cording, lymphedema, et. al. It was presented as a kind of party. Lots of ribbons and pink stuff. You had to go through hell, but you would go through it and come out the other side. You got to play with the cool kids.
And then there were the mets people. I felt like the New York Mets: a viable professional sports team that no one respects. I really had to look hard beyond the rather short paragraphs about 2-3 year survival rates and no cure. Hm, nobody was throwing a party there. No fundraising either. I felt “less than.” Tarnished. Not worthy. Guess I’m not allowed to play with the cool kids anymore.
And if it wasn’t already enough to feel crummy from, you know, learning that cancer would eventually kill me, I kind of felt like it was my fault. I was fat and producing a lot of estrogen, so it must have been my own fault. I didn’t eat well, exercise enough. I couldn’t even blame it on a gene. It must be all my fault. If you read the literature it was all about prevention and early detection. I couldn’t lay claim to either. I deserved it.
Thank goodness I decided to blog. It was through this network that I slowly became aware of the real landscape. Metavivor and Metastatic Breast Cancer Network were becoming my lifelines. Finding other women who were going through this also helped. Wow, some of them were fit, healthy, thin and they still had metastatic breast cancer. Some people didn’t find it early either. Maybe I wasn’t a schlub after all.
In the short time that I have been driving this Corvair (link provided for you young uns) I have learned that the conversation is changing. And, quite honestly, if I was going to steer into this mess, might as well steer into it now. Folks are questioning pink, Stage IV breast cancer is no longer the Debbie Downer of the dinner party, and there are a lot of resources from which one can learn a lot about the disease; the most important of which is knowing that it isn’t necessarily a short term death sentence. And while I am never happy that someone else has come into the fold, I am glad that people are now talking about it. And the first steps in any journey are the most important. Like Winston Churchill said, “If you’re going through hell, keep going.” And, I might add, bitch loudly the entire way.