Living With Grief in the Metastatic Breast Cancer Community

Editor’s Note: This piece was submitted by a contributing writer and does not represent the views of CURE Media Group.

Five years ago, I was stricken with metastatic breast cancer. This heartbreaking diagnosis came not long after I finished treatment for early stage, HER2+ cancer. After my original therapy was completed, I was ready to put cancer in the past. I scoffed at the idea of becoming a “survivor” or living a “new normal.” I planned to the live the old normal: working, raising my children and planning for retirement. Yet, only a few months after treatment ended, I discovered that the disease had spread to my liver, and any hope of normality vanished.

Since then, my treatment course for metastatic disease has ranged from surgeries and radiation to immunotherapy and, of course, many different chemotherapy regimens. I am lucky enough to have reached remission twice, but even then, it is a rare week that I don’t have a medical appointment. So much for normal.

My family is very supportive, but it takes others who live with your same disease to help you come to terms with it. My way of coping has been to participate in the online community — first as a blogger, and subsequently through my Facebook page.

Being an active participant online means I have grown to know many women who are dealing with metastatic breast cancer. It follows that I have known many women who have died. It’s hard to describe what it’s like to be in the midst of a community of doomed women. Joyful would be an odd word, yet it’s the truth. Women who know they don’t have much time tend not to waste it. The friendships I’ve developed are, in some ways, more intimate and supportive than any others in my life. We share worries, hopes and heartfelt insights into life and the nature of humanity. There are few who think about mortality as intimately as we do, those of us who must face it head-on. These women have made me laugh, cry, have given me information and encouragement, and let me know I am not alone through this confusing and lonely experience.

And then they die.

So many have died these past years of the disease that will take me too. At the same time that I am dealing with my own grief — at the loss of my health, my job, my future — I have also had to cope with the loss of these beautiful women who have sustained me. Each time I hear about another death, whether she was a close friend or not, I feel like I’ve been punched in the gut. It is another star put out, another grieving family and another unnecessary loss. It’s sometimes too much, and I have occasionally grown protectively numb, unable to bear it. Watching these women die one by one feels like we are in an airplane circling JFK, waiting to land. I don’t know where my place in line is. I only know that I’m circling too, and I want to get off the plane.

While family members who love a cancer patient have no choice but to involve themselves, these are losses that I have chosen to take on, despite knowing the end of the story. It isn’t easy. I confess, there are times when I have considered slamming shut my laptop and walking away — an idea more tempting when I feel better and can pretend this isn’t my community. Then, I receive another message, another note from a metastatic woman, maybe somebody newly diagnosed, wondering what my secret is for living so long. I write back, always. We share our perspectives, hopes and treatments. I make another friend — another friend with incurable cancer.

There is so much loss in this world. But then I remember all I have gained. I recall the virtual hugs, the people who told me I’m of value, the women who shared the same fears as I have, who let me know I am not alone, have never been alone. Finding each other is a bright spot in dark circumstances. I think about the many conversations that buoyed me during difficult times, and I realize we cannot do this alone.

And so I let the numbness wear off and keep the laptop open despite the losses, despite my grief, despite my desire to run. I stay to honor the women who were not as lucky as I have been so far, and to give hope to the new women diagnosed who will come along looking for help. And I stay because someday, I hope, somebody will remember me fondly, as I remember so many who are now long gone. It is, in a way, our legacy.