Cancer. Go Home.

More often than not, people perceive my work as a hospice nurse as depressing. I always beg to differ. On any given day, I have the unique opportunity to observe and participate in families hope and strength and bear witness to tremendous love. It isn’t always pretty, but it usually more certainly remarkable.

In my particular position, I get to be a part of many different experiences- not all of them at the bedside. As a community educator, I have been privileged to be a part of many different special events that bring end of life discussions to the forefront. On HOPEspot, I have written before about my participation with a phenomenal theater event called “Turning Thirty” that uniquely chronicles one man’s battle with testicular cancer. In this play, Cancer is a character that battles the surgeon in a duel like scene. It is brilliant in personifying the trickery, evil, easily intoxicating nature of this most insidious disease. I think Tom Wilner’s portrayal of Cancer in “Turning Thirty” resonated with me so deeply because I have been dueling with cancer, in different capacities since I was 11 years old.

I am going to cut to the punch line now as to why I am writing about this tonight. Today is September 12, 2016. Three years ago, I was laying on a cot beside my sister, my person, after her double mastectomy and reconstruction. The strongest person I’ve ever known was on her 9th hour of sleep and I couldn’t stop thinking, as I waited beside her, how unbelievably PISSED I was that cancer had knocked on HER door. Katie doesn’t entertain nonsense and breast cancer’s descent upon her was equally shocking and unnerving.

I’ll stop here to say: don’t get me wrong. No one knows better than me, both personally and professionally, how indiscriminate Cancer can be. And while I can say that intellectually, I will admit that seeing Cancer touch MY sister, MY rock, was an unexpected, low blow violation from an enemy I met long ago. Just like “Turning Thirty” duels with Cancer, I, too, felt like I’d met this foe and, albeit magically, I felt like we had a deal.

For those new to the story, let me recap. My Mom was diagnosed with metastatic malignant melanoma when I was 11. Her prognosis in 1983 was as poor as my family’s response to her illness. We were, in a word, hopeless. Facing the awful fear of losing my Mom as a fifth grader will never leave me, nor will the knowledge that my big sister had my back every day. I was suddenly less annoying and more welcome to watch General Hospital with Katie. My Mom’s inexplicable recovery was never discussed, mostly because we didn’t have much time before I was diagnosed with thyroid cancer. At 13, in 1985, this was a reasonably big deal that required surgery and follow up hospitalizations. I can tell you right now that the day my big sister came to visit me at the hospital and gifted me with a Billy Idol cassette that her and her high school buddy listened to driving to school in a car that I considered sacred, I was sure I was cured. Recovery for me was clearer than cure, but after a short time, suffice to say, cancer didn’t sleep in my bedroom anymore. It moved back to my parent’s room. My Dad was diagnosed with testicular cancer in 1987 and my family’s tolerance for cancer’s presence had grown extremely thin.

To be clear, Cancer was the uninvited over staying visitor in my family’s home in the 1980s. When my Mom, Dad, and I felt like we could say good bye to it, we did with complete conviction: for our minds, we were exorcised.

So imagine my complete disgust and rage, when I received a call from my sister after our family beach vacation at the end of July 2013. “I REALLY don’t want to tell you this, but I have to have a breast biopsy and I want you to come with me.” As life will do, there had been other significant challenges since our “cancer exorcism” in 1989: big life things- our collective threshold for another gut punch was gone.

The details of the ensuing events are largely irrelevant. It is fun, however, to remember how Katie and I (mostly Katie - because she’s a boss) bullied the team into letting me be present for her biopsy. We also had some laughs talking about her new boobs with the plastic surgeon and being creative with a sharpie. But you know what isn’t fun? Watching your sister tell your nieces that she has breast cancer and hearing them beg for a promise that she won’t die. Or listening to your parents, who’ve already taken care of a child with cancer, but are now significantly older, try to process this new reality.

Katie wasn’t supposed to get cancer. Katie and I used to play so many games as kids, and kickball was one of our favorites. Katie, for me, has always been home base - if I could get to her, I was safe. Cancer was supposed to follow those same rules. When the rest of our family was at play, Katie was supposed to be safe. I was INCENSED at this violation. Old friend, the gloves are OFF!

So now we are back to September 12, 2013. After consulting with surgeons and oncologists (and being there as the family nurse like I knew a FREAKING thing!), Katie is in surgery. I sit with her husband and my Mom. We chat easily because we are no stranger to the surgical waiting room.

Eventually, we get to see Katie and in a fog of anesthesia, she asks about her nodes. Her husband tells her what we know which is that they are clear. Eyes closed, tongue thick, the ultimate competitor gives a thumbs up and a hell yes.

And then we follow her to her room. After basic assessment, her care is essentially left to me and my Mom. She is sleeping. We believe nodes are clear. As she continues to sleep, my Mom and I create our sleeping spaces next to her so we can be there at a moment’s notice. Katie, however, continues to sleep.

So it is at this moment, just as Tom Wilner depicts in “Turning Thirty”, I imagine a duel. I remember meeting Cancer under the Christmas tree when my parents told us that my Mom had cancer and my grandparents would be staying indefinitely. I was happy about my grandparents staying and yet that seemed wrong. I remember Cancer at the dinner table  when my Mom was sick and there were a lot of bad moods. Then, I was diagnosed with cancer and the tsunami of support, care, fear that overcame me as a 13 year old person was overwhelming. Then, I was in isolation with Cancer and I hated it like nothing I have ever known. I didn’t feel like I was over that when my Dad got Cancer and I was mostly just beyond sick at its presence. By the time I was 17, I hoped/ believed I said to Cancer “good game - go away.”

And here I am- praying next to the one who nursed us all-albeit unwillingly- and CANCER has come back?? I am forced to think about the number of amazing patients and families I meet who are bulldozed by the diagnoses their loved ones fall prey to. They are ill prepared and scared as hell.

We are tonight three years away and I am so thankful. The NHI and ACS are ready to give stats about years of survivorship and I pay attention to each and every one as it pertains to my sister. A lot has happened in those three years and I am always left to wonder how those agencies account for those variables.

But this I know. That night. Three years ago. Just like so many of the other families I meet, I stood toe to toe with cancer. Katie, in the bed, was doing the hard work, but those of us that love her were there, pushing this unwanted, re-occurring BULLY out the door. I felt with confidence we got the upper hand that night and THANKFULLY the last three years have affirmed my suspicions.  I write this tonight, however, as an equal tribute and warning: leave my sister alone, Cancer. Leave. Her. Alone.