When treatments are working, it can be hard for loved ones to understand the divide between appearances and the reality of the diagnosis.
The world of metastatic breast cancer is a strange place to live when treatments are working. You look about normal. You feel about normal. Yet there’s that vast canyon separating appearances from the realities of the diagnosis.
But being open about a metastatic diagnosis means confronting the inevitability of increasing disease, whether that disease is happening now or at some as-yet-unknown time in the future. It means being able to tell the people you love and those who you may grow to love that there is fear and pain, sadness and loneliness behind the smile that every one of us seems to put on in public. These are not the words our friends want to hear, and often they are not the words we, ourselves, want to say. For me, acknowledging the negative feels like a tempting of fate. Do we really want to say out loud what we know to be true?
Because I look perfectly fine, I get to live my life like anyone else. I don't get special treatment anywhere, random strangers don't give me encouraging looks or hugs, and I am subject to same rudeness we all experience while doing mundane activities like waiting in lines. I wouldn't want it any other way. I admit it, though, there are times when I want to scream, "Please! Stop being a fool and look at me. I have stage 4 cancer! Be nice to each other!" These times usually happen when I am worn out in every conceivable way. A nap, in other words, is definitely in order, and I have taught myself to slow down when this sort of mood arrives. No one knows what I feel because they are not me, I tell myself. If I actually wanted something different, then I would say something. The truth is, getting to live my life in a normal fashion for the last year, as my hair grew back and strangers no longer could easily identify me as someone ill, has been a gift I did not expect.
It is doubly hard to explain to a friend in denial or who just simply hasn't really listened or understood that, yes indeed, treatments for metastatic cancer continue until they no longer work and the cancer spreads further. As much as I would like to fully return to my old life and spend less time thinking about cancer and its various treatments, I will always have some portion of my brain and heart devoted to the knowledge that my future is not entirely under my control. Now, before you say life is like that for everyone and that no one knows when he will get hit by a bus or whatever, I urge you to reconsider. Those words minimize and ignore the realities of living with this disease.
When I think about metastatic cancer and that metaphorical bus, it is in this way: unlike the person who may or may not get hit by a bus tomorrow, I am not wasting my time wondering if I will get hit. I already have been. I am living daily with a disease that is likely to hit me harder at some undefined point. And right now, I am busy doing everything I can to move out of the way as that bus tries to back up and head my way again.