Every now and then, someone from the #MTBoS writes a powerful and deeply moving piece. Sometimes I know these people, sometimes I don’t, but reading their stories can be deeply moving for me, and opens up a connection. Someone takes a brave step, and shares something important, not knowing how they will be viewed, or judged, but willingly taking that personal risk. I’ve admired these people, and wondered whether I would ever share my story – what purpose it would serve, would it help anyone, would it be for anyone but me? I guess there’s a little bit of that in every blog post I write.
But now I think I get it. There are certain things that you may want understood about yourself, which may or may not make some people uncomfortable, about which you don’t want to be repeatedly explicit. And while there is always the possibility of negative reaction, the discomfort of the masquerade outweighs the fear of consequence.
Seven and a half years ago, I was given the diagnosis of invasive lobular carcinoma – breast cancer – and was treated with surgery, reconstruction, chemotherapy, and follow-up hormonal therapy. Given family history and the fact that over 12% of American women will get breast cancer at some point in their lives, this isn’t really a shocking event; if you are female, someone in your circle (1 in 8) is going to experience this. It was during my third year of teaching, and I was fortunate to have wonderful doctors, good insurance, and amazing personal support at home and at work. The kindness and generosity that was shown to me during my illness was humbling, and I will always be grateful for every bit of it.
I had a recurrence scare – which turned out to be not – two years later, which launched me into the next level of treatment – monthly visits with my oncologist (who, thankfully, I adore) accompanied by injections and blood tests. My visits were medically boring (again thankfully), and, as he examined me, we discussed everything from our children to our
travels (he gave me a list of Park City restaurant recommendations on a prescription) to the state of public education. I was scanned several times a year – CT scans and bone scans, and then PET scans – because the cancer markers in my blood were continually on the rise. There were no changes in my pictures, so my monthly sojourns to Long Island (I followed the doctor when he relocated) fell into nice predictable pattern.
Until February 8.
For the first time in 6 years, there was a change in my scans. Dr. Raptis ‘was suspicious’ that it was a recurrence, and I spent the balance of the month visiting the radiology department at Mount Sinai Hospital, to finally receive a biopsy-confirmed diagnosis this week – metastatic breast cancer, two small lesions in one of my vertebrae. The dark place looming in my imagination since 2009 has manifested itself, finally – something I almost feel like I was waiting for, except I wasn’t. Not really. I was hoping to outsmart it.
The good news – it’s treatable, the next level of treatment involves pills (although I would have endured the massive injections forever if they kept illness at bay), and I have been told that the biology of my disease is that it grows very slowly, and is even now barely perceptible. I have no symptoms, am getting the best treatment available, and I’m stilling seeing one of the top breast oncologists in New York.
The bad news – well, who wants a diagnosis which includes the word ‘metastatic’?
For a long time (like until this week), I didn’t talk about my medical situation with people unless (a) they were with me eight years ago or (b) they were really close friends. It wasn’t a deliberate act, or a secret, but it was in the past, and [hopefully] irrelevant. But things are a different now. I’m different now. I want to move forward with my life – enjoy my children, be devoted to my work and various forms of professional development, find time to quilt, read, exercise, be with friends. The days of believing time is infinite fade for everyone as they get older, and that awareness is ever more keen for me. I don’t, however, want it to change my outlook, except for the better.
So why write this? Why post it, and create an indelible virtual record? I guess I don’t want this to be a secret. and I don’t want to have to explain myself. I want to say ‘no’ to things I don’t really want to do (but think I should) and ‘yes’ more frequently to me. Sometimes I need to go silent online, and sometimes I just need to tell the whole truth. And I don’t want to have to explain myself when I do.
Whenever I have read a post in which someone has shared something of themselves, I feel touched by them – entrusted with their confidence, even if that confidence was shared with the virtual world – and grateful for the opportunity to be part of their community. I’m going to quote Megan Schmidt, someone who is absolutely fearless in her honesty, and in this, a role model for me.
“Let’s lift each other up in a way that helps us grow from the inside and helps us appreciate our own abnormalities as perfection.”