I am proud to call this woman a friend. Heather Janssen, mom, wife, writer, editor, lovely, proud, force of nature gave this speech on Friday about living with stage 4 breast cancer. Sometimes the ‘unfairness’ in life is balanced by the amazing people you meet along the way…..
My name is Heather Janssen. Please accept my gratitude at your presence here tonight. Whether you’ve been affected by cancer (that’s such a benign phrase, isn’t it?) I think we should say, “Whether you’ve been assaulted by cancer either yourself or because a loved one or friend has, or because you’ve got a child, grandchild or friend in the show tonight, your presence speaks loudly. To me, it says that bringing an end to breast cancer is important. Thank you.
I was diagnosed in May 2008 with stage IV breast cancer. Staging can seem like an unknown to those who don’t know (and who wants to until you have to?) Basically, there is no stage “5” in cancer. When you’re diagnosed at stage four, certain doctors begin to talk about how they’re very able and willing to help make you comfortable before you die. Certainly, for many victims diagnosed at stage IV, the end is near. For many of us, though, it means that we will be forced to live with cancer until it kills us, which, in all likelihood, it will, but may not, and may not soon. It’s very different for every person, since cancer is pretty sneaky and shows up and grows differently in everyone. . For me, what it has meant is that I went through the traditional routes of treatment: chemotherapy, double mastectomy and oopherectomy and radiation. That’s the route most familiar to most of you. After I finished the cadillac round of cancer treatment, I was given a blessed reprieve—the state of being “NED” or No Evidence of Disease. This needs to be clarified as separate from a “cure” in spite of its optimistic sounding nature. Indeed, it is optimistic. What you may not know is that many of us living with this stage IV, or what we call metastatic disease, in any form (not just breast), whether we’re NED or not, generally undergo ongoing treatments which we will face forever. Yes. Forever. So every three weeks I still go to my oncologist’s office in Denver and receive an infusion of two drugs that will hopefully continue to keep me strong, kicking and mouthy for a good many more years. I also take a little pill every night to suppress any leftover estrogen in my body. It makes my feet hurt so I hobble around like a hobbit in the morning, but other than that, the side effects remain unseen.
I spoke last year about how my body was in tatters. I’ve mostly made peace with my deformed body. My scars are healed and mostly invisible, and I’m getting used to this “new,” albeit plumper, me. They serve as reminders—sometimes painful, but more and more, as bittersweet reminders of the terror we faced when I was diagnosed and the subsequent relief we’ve had as I’ve gone well past my “use by” date, if you will.
What I haven’t been able to piece back together quite so seamlessly are the internal wounds. They’re still wide open and bleeding, not yet having had a chance to scab up and begin the scarring process. They keep seeping through the bandages of denial I attempt to use as salve. Simply put, cancer has broken very nearly everything in my life. I’ve watched my husband break, my own resolve break, the woman that I was break, my daughter’s innocent childhoods break. It would be one thing if we could have gone through cancer and were now done with it. Then perhaps the damage could be left alone for awhile to heal without new trauma. But we don’t get to “leave it behind.” Every three weeks I get reminded of my status, and that rips my scabs off all over again; when you’re told, via a stage IV diagnosis, that you’d better stuff a lot of life into a fairly limited time frame, let’s just say, you do what you’re told. I’ve become more mouthy, more giving, a little bit more funny, probably only to myself, and daring, and become who I’ve always wanted to be….at warp speed. There are certain downfalls to this, though. For example, my family no longer recognizes me. It makes it difficult when I pick up my kids at school, or my husband rolls over in bed and screams, “Who’s that woman?!”
The other fallout is that these loved ones who no longer recognize you haven’t entered warp speed. They’ve been left wobbling on the ground in the aftershock of the takeoff of the unrecognizable family member. And something in them breaks. It’s one thing for me to face the terror of a cancer diagnosis and fear the worst. It’s quite another to watch your family and dearest friends wade through the same cesspool of fear, trauma and pain. To watch as they disconnect from reality to gain a tenuous reprieve, or fold inward because the pain of being vulnerable is just too painful. These are the wounds that resist healing, because the fear doesn’t stay away politely like it ought to. It shows up in the most inopportune, unexpected times, and all our resolve collapses. We cling fiercely to one another, forced to face the fear and the pain. In those times I find myself irrationally angry that anyone would love or need me so much that the very thought of my absence causes them such pain. Frankly, I don’t want to be that important.
But we manage to pull ourselves off the floor eventually, put on the pot of coffee, pray for strength, and resume life. Recently I discovered the artist P!NK. Yes, I’m old and out of touch. You probably are too. Nonetheless, she’s raunchy (don’t let you children listen), and her music is pulsating, pounding. I’ve found that she provides the perfect soundtrack to my anything-but-normal life living with stage IV cancer. I can rage while pounding away on the treadmill, angry at the broken pieces of my life. After I’ve defused my rage, I can again enter the center stage of life and see how, though broken, all these beautiful pieces are dancing their own gorgeous, though sorrowful dance. My husband’s ability to make us laugh punctuates our battered landscape with joy. Thanks, Clark. My daughter Emily’s laughter is in itself a song. My eldest, Katie, accompanies our days with a melodic thoughtfulness. Eliza, our baby’s, whole life is one bouncing, lively dance. And Megan, our blondie, keeps us all on our toes, her sharp wit and mind providing lively lyrics to all the music.
I hate cancer. I hate that it puts me in a full nelson of guilt and shame that I’m still a mom without enough time for myself or energy to give to my girls as much as I’d like. I hate that it’s the big, ugly, fat elephant in the room when my husband and I try to talk about the future. I hate that it’s made having even the most benign conversations, sometimes with strangers, wrought with awkwardness due to my inability to respond in a socially expected way, i.e. don’t mention the cancer. Except that now I do. I tell everyone who gives me even a moment of their time or a portion of their ear that I am LIVING with cancer. Not that I HAD cancer and am now “cured.” Not that I “beat” cancer. I say, “No, I’m not done ‘with all that’ yet and explain that I will most likely be in treatment forever, god willing and if they keep coming up with drugs to keep my cancer at bay. Because I’ve decided that, for me, it’s really important that people understand that it’s a part of what makes me “me.” It’s also what makes far too many of my sisters and brothers battling metastatic disease who they are. Part of the “Ride on the Cancer Rocketship” freak show–whatever I’m thinking just comes right out. I talk a lot about living with this disease, salted throughout with heavy sarcasm and an unhealthy dose of profanity, all in an effort to keep this reality from pulling me into constant, chronic grief. It’s one of my most powerful weapons; if I can laugh, if I can cry, if, for the love of pete, I can dance a crazy dance, then it’s not winning. I am. I win. I will not roll over and die to this monster that has broken my life in irreparable ways. I will however, take those pieces and patch them together with my voice, my humor, my loud and obnoxious singing, my ambition, my mothering, my friendship and my belief. I will refuse to allow it to break anything more.
The truth is, we’re all dying. Some of us just live with the reality and its nearness closer than others. It’s morbid, for sure, but it’s also a brutal reality. My life is lived in a middle earth between life and death. But really, when I look closely, when I’m dancing, it’s an earth full of life being lived apart from illusions, with death no closer than my last breath.
-Heather Janssen
Welcome to Samsmom. I'm Heather and this is my journey as we navigate love, loss, rare disease, hope and resilency. Our family carries a POLG-1 genetic mutation that took my two children, Jack and Samantha and most recently, my brother Ryan. It's not an easy place to be, but here we are- with humor, love and grace, here we are. 