What it's like to live in a world that includes me, yet somehow keeps me out.
One of the crazy things about living with metastatic breast cancer is that sometimes, and sometimes for a long time, you just don't look like a cancer patient. I'm not going to lie, it’s freeing to walk around knowing that no one can tell anything about me just by how I look.
During the first year following my diagnosis, I lost all my hair and lost weight as well. My hair grew back slowly once I stopped Taxol, and I regained some of the weight I lost, and now, at about 39 months post-diagnosis, I look like someone who has only the usual health concerns of anyone in her early 50s. I like that … and I don't. I have fully accepted the idea of me as a patient, but it can sometimes seem like I'm the only one. To everyone else, including those who love me most, the patient part slips away because I look just fine, and I go on with life as usual, except for that every-three-weeks IV thing and the steady stream of scans and tests. I am so different from what others believe me to be. Talk about dissonance.
When I try to talk about fear or the future, it has to be on my terms and at times I choose, so it can feel like I'm bringing down destruction. Who am I to wreak havoc on the worlds my family and friends have built that include me, yet somehow keep me out? The effect of this dissonance, for me, is the feeling of isolation, which I wrote about here, as well as invisibility. I've found ways of adjusting and overcoming those feelings, but that doesn't mean they don't demand my regular attention. I can live with this, because really, I am more than a cancer patient and it's nice that my friends are here to remind me of that fact.
But with people I see sporadically? Who I know care about me, but we're not exactly friends? I ran into two such people just last week; one of them rushed up when she saw me. I got the obligatory head-tilt and a "How are you? You look so good!" and once again I grit my teeth. For me, it is always a bit uncomfortable to talk about a stage 4 diagnosis. It's worse when the person I'm talking to is hell-bent on the feel-good pink narrative. I'm torn between aggressively bursting her bubble with the statistics of recurrence and keeping the peace with my silence. This time, silence wins out. But I'm left thinking of it, even now, a week later. The problem is that, like the dissonance I sometimes feel with my closest friends when "cancer patient" is a forgotten piece of me, there are two opposite demands: Both "Why should I protect you from the truth about my cancer?" and "You look so happy believing I'm cured. How can I spoil that?" When I opt for silence, I regret it immediately. It isn't my job to keep the lies about breast cancer intact just so someone else can feel comfortable, but sometimes I just don't want to bring the bad news.