Beauty and the Beast: DC Edition

If you're friends with me on Facebook - or in real life! - then you know that I spent last week in Washington, DC with FightCRC, an advocacy group that works to raise awareness, increase screenings, and raise funds for colorectal cancer research. I joined the group last fall, when they generously allowed me to become one of their research advocates (RATS), and I've been in love with them and the work that they do ever since; I'm truly honored to be a part of the organization.

Beauty

This year, I attended FightCRC's tenth annual Call on Congress event, where survivors, caregivers, loved ones, and activists get together for training and then take to Capitol Hill for a day of meetings with Congressional representatives, urging them to pass bills and support government funding that goes towards age-appropriate screening efforts as well as research and development efforts that help create more treatment options for patients and that will, someday, make this dreadful cancer history!

(Me, ready for Hill Day)

(The Colorado posse meets Rep. Mike Coffman)

(And Senator Michael Bennet)

There's really nothing like meeting your senator or his/her senior staff members and talking about booty. If you'd told me I would be doing this five years ago, I would have called you craaaazy, baby! But now I've been there, done that, and can't wait to go back! 

The entire experience was exhilarating, life-changing, and somewhat surreal. Before the 119 of us who had gathered to take part in Call onCongress actually trooped over and took the Hill by storm, we spent two days getting to know each other and learning about the bills and funding we would be asking our representatives to support: 

(These were our "asks.")

Because I can't seem to shut up and am used to throwing down random facts to help make my arguments, the CO team appointed me the main speaker. It was AWESOME but I'd lost my voice by the end of our five meetings!

It wasn't all policy wonk stuff. There was PLENTY of time left over for meeting celebrities who support our cause: 

(Hanging with the talented and kind country music star, Craig Campbell. Buy his song, "Stronger Than That" on iTunes and all profits will go to CRC research!)

(Kicking back with Real Housewives of Orange County star Heather Dubrow. One of the nicest, most down to earth, well spoken women you could hope to meet.) 

And LOTS of celebrating. I'm not sure if you realize this, but no one knows how to party it up like a cancer survivor! Every night, these hilarious, amazing, loving people closed the little hotel bar down...once they even climbed behind it. And they danced their butts (if they still had butts - ha!) off; they even made everyone's favorite bartender, Edwin, come dance - and he's profoundly deaf. (And yet he still had excellent rhythm - talk about a humbling experience!) 

(This is Edwin.)

(At the bar.)

(Behind the bar!)

I met a lot of new people, which was difficult for me, because I really really hate meeting new people and because I've pretty much kept my distance from the cancer community, as if not making friends with other patient/survivors would somehow keep me from having to admit that I have a really serious disease. But I'm glad I finally crept into the community (slunk onto the sidelines of it, anyway), because (surprise, surprise!) I found my people! No one knows life with cancer unless they've lived it. Here are some pictures with some of my new friends: 

(Anjee, president of FightCRC; Me; Evan; and Anne)

(My beautiful friend Anne and me. After talking for 10 minutes, I felt like I'd known her for ten years. ❤️)

(Catching up with fellow RATS at dinner: me, Karen, Elaine, and Kathy)

Needless to say, it was an extraordinary event and I wouldn't have missed it for the world. As an added bonus, my dad drove up to meet me at the airport (thank Goodness, because I am terrified of flying and this was the first time I'd been away from my whole family since diagnosis!) and spend Saturday night with me: 

(Selfie with my dad)

AND I got to spend time with two of my college roommates who live in the DC area! I also touched two pictures at the National Gallery of Art without getting in trouble. Jenny, though, got within a foot of one picture and nearly had her backpack confiscated. We also had a long and very entertaining talk with one of the security guards, who told us, among other things, where to find the baby Jesus who looked like Danny DeVito (he really did!!).

(College roomies: me, Andrea, Jenny)

The Beast

I could end this here on a lovely high note, leaving you feeling happy and impressed that I have all this energy and that I'm out there making a difference and having fun. But I feel compelled to tell you that the story doesn't end here.Throughout the whole, triumphant and encouraging week, there was another narrative - one of exhaustion, of tears, of frustration, of illness. For all the pictures I took, what you won't see is what was often the reality of each day: 

- me on the plane after taking two Xanax and not sleeping the night before, convinced that we were going to crash and praying up a storm

- feeling pain in my leg and convincing myself that I probably had a blood clot, even though I take a daily blood thinner

- me, lagging behind my dad as we walked about 7 blocks to dinner, because my feet hurt so much from all the trudging around the airports

- lining up all of my medication and realizing that I would have to ration my pain pills in order to make it through the week

- trying to get my pajamas on but my joints hurt so badly that I gave up 

- waking up on Sunday morning after arriving Saturday afternoon and realizing that I'd already started a cycle of dependent edema

- hiding in my room Sunday night instead of going to the reception because I was too nervous

- having to set three alarms and two wake up calls so I could be awake early enough to go on the RATS trip to the NIH. (I made it!)

(Thank you, iPhone alarms and front desk people!) 

- looking wistfully at an empty wheelchair in one of the NIH hallways and wondering how I could snag it

- having to skip the Tuesday morning panel sessions because I literally could not get out of bed 

- hobbling downstairs for the afternoon session in shoes that didn't match my outfit because the boots that did match no longer fit me, thanks to my edema

- weeping on a surprised but gracious Kathy's shoulder as everyone went around the room and told their stories about why they were there, which made me feel fortunate and devastated and unlucky all in equal measure

- weeping some more at Anita's kindness when she offered to send me some healing water from Lourdes

- having another emotional moment when Anne brought me the pictures of her meeting Pope Francis, and holding onto those pictures like a lifeline all the way home to Denver 

- collapsing on the floor of my hotel room on Tuesday evening in tears and prayers for all the suffering I'd learned of that day, and for my own pain, too

- getting dressed Wednesday morning and realizing with horror that the skirt I bought to wear on the Hill wouldn't fit over my hips because my edema was, at that point, completely out of control (I finally wriggled it on, but just barely)

- getting passes to visit the Senate floor from one of Senator Bennet's advisors...and then realizing that I didn't have the energy to walk over there, nor to walk back later and find a cab

- giving myself shots every night in my arm to help keep blood clots at bay, and accidentally shooting myself in a spot that was already deeply bruised 

- looking at my toes Wednesday afternoon and seeing that they were round little snausages and that I had really remarkable c'ankles. 

- crying about that and not being able to wear the cute dress I'd brought for the celebration dinner

- realizing as I changed that carrying my bag with all the necessary info for Hill Day on my right shoulder had resulted in me rebreaking my rib AGAIN (my 3rd fractured rib, originally broken as a result of a bad reaction to SBRT)

- having to throw my plans to go sightseeing on Thursday morning out the window because I literally was too exhausted to get out of bed, and my joints made it too painful to walk more than a few yards

- having to wear my pajama bottoms as pants onto the plane because none of my other pants fit anymore, thanks to the edema, and having to shove my giant feet into my shoes so forcefully that I bruised the tops 

- arriving home and hosting a slumber party for my daughter the next day, then spending the rest of the weekend and two more days on top of that in bed recuperating. 

It's easy to think that blog narratives or Facebook realities are the actual experiences of people, and I'd just like to remind you all that this is not the case. Just as we carefully create and sustain a public persona, we all do the same even more powerfully online. Reality is so much more difficult to share, and to bear. 

The beast that is cancer never leaves my side. Even on my best days, it is always with me, an insistent and painful birdie on my shoulder. Just as whatever it is that causes you deep pain is always with you. 

Let's all be a bit more tender with each other, and maybe we can do even more than wipe out cancer. Maybe we can rid ourselves of secret sufferings and find instead some much needed solace, both for ourselves and for those we love. 

That's one of the most powerful lessons I learned in DC. Despite the terribly difficult lives that many there were leading, they always had room for compassion, and joy, and love, even for someone like me whom they hardly knew. I was lucky enough to stand among heroes last week. Thank you to FightCRC and all of the attendees for letting me stand with you.