The Pink Sisterhood

I attended a screening of a breast cancer documentary last night because, you know, it's breast cancer awareness month. I was there for the discussion after the film to offer a different perspective, because my breast cancer is Stage IV. 

Now I figured the audience would be mostly women (it was). But I did not expect the audience to be dressed in pink. All of them. Dressed in pink. Pink shirts. Pink socks. Pink sweaters. Pink purses. All of it pink. A sea of pink.  I'd never seen anything like it before. 

And considering how much pink was already going on in the room, I found it odd that the women in the room were clamoring for even more pink. "I have t-shirts!" the event organizer called across the room,  holding a bright pink t-shirt aloft, the word survivor emblazoned on the back. And the women surged forward to grab their pink reward. They were a pack of pink breast cancer sisterhood, a sorority you can only enter after enduring a horrifying and hellish hazing period. 

But I am not a member of the pink sisterhood. My cancer has spread. I will not be a survivor, and survivorship is a cornerstone of membership in the breast cancer sorority. The reality is that roughly 30% of the pink sisters in the room last night will join my sad sorority, the cancer coming back into a distant organ, taking the poor woman through a new and never-ending hazing routine.  But as of last night, the women in the room had all been through breast cancer, their treatment was done, they were moving on with their lives.  They were survivors. They were members of the pink survivor team.

I do not blame those women for loving pink, for holding on to the hope that the cancer will never return. I certainly wish I could be a member of their group. I hate the color pink, but I would have been happy to wear fuchsia to be a part of the crowd. It's just I never got to experience living in the world of "your cancer's gone, you can go about your life now." By the time I was first diagnosed, my breast cancer had already spread to my liver (HER2-positive cancer is an aggressive and fast-growing disease).  Any way you cut it, pink was never meant to be my color after all.

The one wish, though, is that people would quit assuming that, because I say I have breast cancer, I will automatically survive and insist to me I will survive as well. Not everyone survives, and it's a sad reminder of that fact when the person I'm speaking to insists otherwise. Everybody survives breast cancer is a line sold by clever marketing people who want us all to believe that cancer, if caught early, never comes back, so please, buy these pink things and we'll give a little of the money to awareness campaigns, and then we'll pocket the rest. Breast cancer can come back years after first diagnosis. And breast cancer can and still does kill an estimated 40,000 women and men in the US every year.

So do me a favor. Do not assume that just because my boobs are gone and I've had chemo, that I'm happy about it and moving on with my life.  I live in the world of cancer permanently. Cancer will most likely kill me, unless that proverbial bus hits me first.  Go ahead and wear your own pink. Just try not to rub the pink in my face as well.  This is hard enough already.

Still Here

Last week a right-to-die advocacy organization contacted me.  I am terminally ill (Stage IV breast cancer) and had testified before the District of Columbia Council two years prior in support of a physician assisted dying law in the District.  A Washington Post reporter had emailed the organization, hoping to use a quote from my testimony, and the reporter wanted to know if I was still alive and if still lived in Washington, DC;  in other words, would I be able to take advantage of assisted death legislation.

Now I understand the practicality of these questions.  In two years I could have easily moved and, considering the capricious nature of metastatic cancer, I could just have easily died.  Still, seeing someone ask about my continued existence in an email was jarring and, in the end, soul shaking.  Was I still alive?

My response was short and to the point.

"Yes, I am still alive.  Yes. I still live in Washington, DC."

The organization's representative seemed thrown by my response, and tried to back pedal on the question of my being alive. "Of course you're still alive," he replied.  After the email exchange, I went back to my work day.  I was fine. The impact of the exchange didn't fully hit me until that evening.  In the middle of cooking dinner with my husband I stated, "Someone asked me if I was still alive today."  And then I left the room, sat down on the couch, and began to sob.

No one had ever so directly asked me this question before.  I live knowing that my health could quickly change, I could be dead in weeks or months. But I also live pushing that thought away just so I can get through my every day. I've discovered that I cannot function if my mind is filled with the reality of my impending death.

Many people ask me about my health. Thank God it doesn't happen too often, because frankly, when someone asks me how my health is what they're really asking is, How bad is the cancer?  Where has it spread?  How long do you have to live?  What is interesting is that even though I have been asked this many times in the five years since my diagnosis, I am still shocked when it is asked.  As soon as the health question floats into the air, I know everything I need to know about the person asking. She does not see me, she sees cancer. To the questioner, I am merely a disease, not long for this world.  A short timer.  The questioner does not want to know about me, the disease is the focus.  If the person really cared about me, she would ask "How are you," the emphasis on the word you.  How are you, a living, breathing, feeling person?

And I still struggle with how to respond to the how's your health question. Often I redirect the conversation to the questioner's health.  How is your health?  How is your heart?  How is your blood pressure, that family history of stroke.  I am hoping to illustrate that we all have health issues, we all will die.  I am not special in dying.  I just know the most likely cause of my own death. Even this approach is apparently not clear enough.  I still get the health question.  I want people to stop asking about my health. I want them to ask about me.  I am not walking death. Perhaps I simply need to state this more directly, become a haranguing educator on how to speak to the diagnosed.  

But nope.  I've decided the next time I'm asked about my health, I will reply, "Why? Do you know something I don't."   Get an uncomfortable laugh. Make them feel guilty. Why not?  The strategy worked for my mother and her mother before her. I come from a long family tradition of making people shut the hell up through guilt.

But still, there is the continuing perception that I am dying.  My close friends do not make this mistake. They know, in the tradition of Valerie Harper who was diagnosed with metastatic lung cancer several years ago and is also still here, that I will live until I die.  Since my diagnosis, many people I know have died before me. The healthy 50-something man who died of a sudden, massive heart attack. The seemingly healthy 50-something woman who was outwardly perfectly fit but was really harboring Stage IV colon cancer which she would not get checked, and was dead a week after diagnosis.  The incredibly fit 40-something man who exercised and ate right, but was dead two weeks after they found the lung cancer.  The sweet, kind, fit man who apparently suffered from crippling depression that drove him to take his own life.  I have outlived them all, and yet, I have had the diagnosis, the "bad health" for longer.

The point is there is no way to tell who will live and who will die and when.  Outward signs of health do not mean an escape from death. It only means you get to pretend death is far, far down the road. After the above gentlemen died of a heart attack, I had a conversation with another woman with metastatic breast cancer. While we both acknowledged the sadness of the gentleman's early demise, we also expressed envy. "How lucky he was to die quickly and not know it was coming."  It's the knowing that is the challenge.  Unlike most people, I know death is coming and I know it could come at any time.  But also unlike most people, because I know it's coming, I vehemently appreciate every day I live past my supposed expiration date.  That sense of gratitude eluded me when I was able to pretend I was not dying. In dying, I ironically found life.

Meanwhile, here is my tip for checking to see if a terminally ill person is still alive.  Send the email or make the call, and when the person responds or picks up the phone, assume she is alive.  If you do ask the person if she is still alive after hearing her voice, do not be surprised if she then goes on to point out your impending death. Because, believe me, thinking about your death sure as heck ain't much fun, and you don't want to hear it.