2018 26 April: The Big 0-5!

A cool late Friday afternoon was turning to early evening on this day five years ago as Nick and I arrived at home, shell-shocked and terrified with the new knowledge that I had cancer.  As we sat there in the car, I finally googled survival statistics for advanced stages of colon cancer (I wouldn't know if I was Stage III or IV until the following Monday).  Survey said: nine percent five year survival rate for stage IV. Nine. Nine? I couldn't breathe. I gasped like a fish out of water. Nine. My expectations of seeing my babies grow up had just plummeted. I likely wouldn't even see either of them make it to nine years old. 

There's a reckoning that occurs when you're confronted with your own mortality, a disrobing of sorts. I felt so empty those first days - as though someone had turned me over and shaken me, and almost all of the things that I thought mattered fell away and lay broken at my feet. In place of all of that, a smooth canvas of pure white terror and a dense, dark knot of love for my family. It was the simplest, most surprising thing. 

As we worked to get our bearings, I grabbed onto that knot and didn't let go.  I said no to the statistics, and the outlooks, and the pity that welled in people's eyes.  I never mentioned that stupid nine to anyone except my oncologist, who told me that the only statistic that mattered for me, was me - I was either 100% here or I was not - and that if a patient makes it to five years, they usually make it to ten. I tucked that information away and silently set my sights on that five year mark. Through two major surgeries and over a dozen smaller ones, through hundreds of doses of chemo, through the discovery that my inferior vena cava had been stapled shut during my liver resection. Through several rounds of SBRT, through a clinical trial, through weeks and months and even years of struggling with low oxygen - I kept my eyes on that five year mark. No matter what.

...and it has felt a little like The Hunger Games at times, TBH

And guess what?! I MADE IT. I'm here! I am alive and (relatively) well, and feisty AF. Long live the feisty among us, for they shall take the lemons of life that come their way and make them into vodka drinks that double as good smelling hand grenades.

It's a little strange, to be here after spending five years wondering if I would ever get here. I've really had to stop and force myself to look around. My kids, most importantly, are now 11 and 9. My daughter was in first grade when I was diagnosed, and now she's in junior high! My son was finishing his first year of preschool then; he's a lanky and mischievous third grader these days. And I've seen five years of birthdays, Christmases, first days of school. I've watched my daughter lose all of her baby teeth, remain as grounded and self-assured as she was at six, dedicate her passion and indubitable curiosity to animal rights, women's rights, immigrant rights, and LGBTQ equality; she's a young woman now, and one of my favorite people to talk books and lacrosse goalie strategies with.  I've had a front row seat as my son has grown from a cuddly, downy haired toddler into a (still pretty cuddly) brilliant, generous, funny lacrosse playing whirlwind with "flow" (long hair) that would make a fashion model cry. I've been awakened by my baby boy for very urgent and very late night discussions about life, death, and the universe. We've discussed the architecture of a good joke, how important it is to read the room, and knowing when something has crossed over from funny to infuriating (this last bit is not always a discussion - more like a, uh, loud lecture).  We moved to a new house and a new neighborhood. I've attended piano recitals, theatrical productions, sporting events, and academic nights.

And that's just a glimpse of all that the last five years have afforded me with my children. I can't even begin to share all that my husband and I have endured, experienced, worried about, and rejoiced over together. Or how my mom has been here - right here - doing the hard and often invisible tasks of keeping our family afloat and my mind clear and comforted. And there's my dad, My brother and his wife. My in-laws. My aunts and uncles and cousins. My nieces and nephews. And many dear, dear friends, some of whom have been with us since before our life became a life with cancer, and some of whom signed up with their eyes wide open to the realities of our lives (brave people!). 

And I wouldn't even exist right now if not for my medical team. They've kept me alive. How do you begin to acknowledge that? 

I don't know. 

I don't know how I got here. I mean, some days, I do. It's everyone else. They've borne me aloft, carried me along, cajoled and joked and pushed me through the rough spots - which, truly, are really, really rough. I've had the  great good fortune to have people laugh with me, cry with me, pray with me.  The best of them have treated me like a person, not just a person with a disease. People are endlessly patient with my dumb jokes, my persistent ability to cancel at the very last moment, my phobias about leaving my house or my neighborhood. They take my reluctance to drive and my insistence on not talking on the phone in stride. They? What am I saying? You. You and you and you. You, over there. You've seen me through to this point. I couldn't be here without you.

I know I've done my own bit in staying alive, too, I suppose.  I'm feisty and determined and I always, always play the long game. I have learned a new kind of patience, and been awarded a little bit of grace. I'm full of gratitude and in awe of the Universe. I know without a doubt that there are angels among us, and that they will appear when you are most in need, as long as you stay open to possibility and wonder. I keep reading about the state of research, and pushing for more information, and insisting on being part of the decision-making. I need to be part of the team, you know? Not just the patient on which plans are implemented. Being just a body under repair - that's not a winning approach for me. Beyond that, I try to stay cheerful. I try to find the funny - there are few experiences in life more absurd than being a late stage cancer patient. I try to live my life as though I still have a good bit of life to go - and I truly believe that's true. The Universe isn't nearly finished with me yet. I haven't even been elected to office yet! Or published my first book! I haven't taken the kids to Europe or Asia. I've never been to Morocco. And I have a WICKED TALL stack of books to be read. I can't just not read them. What kind of reading legacy would I be leaving then? Preposterous. 

So, I made it to the five year mark. I remember looking for people like me - long term survivors - when I was early in my diagnosis. I guess there might be people looking at me now, and finding courage or solace or affirmation. Good! I hope you do. The way I see it, the way I've always seen it is: you can make it a long time or you can die trying. Either way, you've left it all on the field (or on the library floor, in my case). Any other way of thinking won't help you prolong your life. More importantly, thinking any other way won't add to the quality of the days you have. And if those days are fewer than they should be, isn't that all the more reason to find gratitude and joy in each and every one? Because both of those emotions are there, waiting to be found. 

The only drawbacks to reaching five years are that 1) I have to pick a new goal, and 2) I think I have to up my wellness game. I'll share more on both of these next time we meet. And in the name of the wellness game, I gotta sign off so I can make it to yoga on time.

Happy 5th Cancerversary to me, and Happy Days Ahead to all of us. xo