2018 0322: Call on Congress: The 2018 Adventure

“[M]y experience this year was, well, a bit of an adventure. By which I mean (cover your eyes if you’re pure of heart and vocabulary) that it turned into a clusterf*ck.” 

- me, about 700 words from now

  

Hooked, aren’t you? I know. It’s the American way.  We all love disasters - and near disasters are even better! Read on...

About two years into my diagnosis, back when I still read all of my email every day, I stumbled across a notice for a conference taking place at my cancer center. They were training people to become advocates for the colorectal cancer   (CRC) community. Specifically, they were going to teach people about the latest research developments and innovations related to CRC. This sounded awesome - a conference that would help me be more pro-active, knowledgeable, and engaged in the research and development of the innovations that were saving my life? Sign me up! The only problem? It wasn’t actually a call for participants - it was more of an announcement that they were going to be holding the conference at the facility and I received it because I was on some quirky list.  With my usual cheerful cluelessness, I forwarded the email to my oncologist and said please help make it so I could attend the conference, pleaseandthanks? Little did I know that this would be the beginning of my relationship with an organization that has changed the lives of so many living with colon cancer, including my own: FightCRC! FightCRC works tirelessly educating people about colorectal cancer risks, helping Americans get screened, participating in research and development of new therapies, and working to pass/renew legislation that benefits the colorectal cancer community. It’s an amazing organization and it’s staffed by some of the most intelligent, dedicated (and fun-loving!) people I’ve had the pleasure to know. 

As you can guess, I successfully snuck into that conference back in 2015, thanks in large part to my doctor’s recommendation (although my own academic and public speaking experience didn’t hurt). I swear I didn’t know that attendees had been chosen from almost 100 applicants and that I was shamelessly winnowing my way in.  But I’m glad I was clueless and pushy, because it turned out to be an excellent fit. I became one of FightCRC’s Research Advocates, which gives me access to all sorts of the latest news and information about various CRC therapies in development and in use today. I’ve been able to visit labs where they’re researching and developing treatments that are saving lives and I even visited the NIH for a special tour back in 2016. I’ve also been able to attend FightCRC’s signature annual event: Call on Congress! 

At “ConC,” about 150 advocates (mostly patients, survivors, and caregivers) meet in Washington, DC for several days to hear the latest statistics on colorectal cancer; learn how current legislation helps Americans prevent, identify, and live with colorectal cancer; train to meet with legislators and their staff about laws that need to be passed or funding streams that deserve to be renewed; share our experiences with each other; and, finally, learn how to use those experiences to make our legislative “asks” more powerful. Then, we all head to Capitol Hill and spend the day meeting with our congressional representatives and/or their senior staffers, telling our stories and urging them to do things like sign on to closing a loophole in Medicare that makes people pay for life-saving polyp removal during colonoscopies or renewing a funding through the Dept of Defense that goes towards colorectal cancer research and treatment for our veterans (and those findings then benefit all Americans diagnosed with CRC).  ConC is a little bit summer camp, a little bit college cram session, a lot of walking, and a very hands-on dive into the nitty-gritty of the legislative process. It’s tons of (intense) fun, especially when you’re an information and politics junky like me. I really love talking to members of Congress, and (I know some of you won’t believe this, because Twitter) I especially enjoy appealing to members who have different political inclinations than I do. Not to toot my own horn, but I’m pretty good at it. I can throw off statistics and make clean arguments with the best of them, and I’ll tell my cancer story in hopes of making people tear up without (ironically) blinking an eye. It’s fantastic. 

People usually leave Call on Congress elated - and completely exhausted.  Although it’s very empowering to take concrete measures to battle a disease that has affected so many, it’s also an intensely vulnerable experience. Many people are sharing their stories and/or meeting other people living through the bizarre reality of colorectal cancer for the first time. The statistics learned are sobering - colorectal cancer is the second most common cancer in the nation, responsible for the second largest number of cancer deaths, and although it has extremely high remission rates (over 90%!) when caught early, only 40% of Americans over the age of 50 have had their colonoscopies - and for those who attend the conference year after year, the annual memorial and inevitable missing faces can haunt you more than a little.  

I first attended ConC in 2016, and it was All The Things. I couldn’t wait to return. Last year, however, I was entering a clinical trial, and if you haven’t been a part of a trial, let me just tell you that your social calendar is booked solid - seriously! You usually have a whole bunch of doctor visits, medical exams, blood work, and testing to complete at certain times before the trial begins, and then you start the trial and have frequent check-ups and tests as well as the administration of the trial itself (in my case, this consisted of a biweekly infusion), plus side effects or complications often pop up, especially if it’s a phase one trial. That’s a long way of saying that I didn’t make it to DC last year. But I was determined to return this year. Thanks to a) a new option that allowed returning attendees to “fly in” just for Hill Day and the celebration that followed and b) a new program that helped people set up fundraising efforts, my dream came true: I made it to Call on Congress 2018. 

Really, I have many of you to thank for my trip. I launched a fundraising page and the generosity astounded me. In only a few days, you all contributed almost $1000, which was enough to fly to DC on the “fly-in” option, pay my conference fees, and then stay in a very nice hotel room at the conference site (the Key Bridge Marriott) where the service people really went above and beyond to help me out and there also were perfect pillows and extremely comfortable, soft sheets.  You even raised enough money for me to use Lyft to return from the Hill on Hill Day, order room service, and then get to Dulles for my return flight. I tell you all of these seemingly small details because my experience this year was, well, a bit of an adventure. By which I mean (cover your eyes if you’re pure of heart or vocabulary) that everything turned into a total clusterf*ck.  

Before I tell you all the gory details, I should make clear that FightCRC, the Mariott, and even the disreputable state of American politics were not to blame here. No, the fault falls squarely on the shoulders of Mother Nature, who has a glitch in her system known as cancer and who also controls the weather. I know that’s a lot to put on old Mom Nature’s giant woodsy shoulders, but she’s tough. She can handle all of my bewilderment and dissatisfaction and still be back to love me in the morning. She’s a mom, after all, and "being reviled and adored by the same people" is part of our mission statement. 

Everything started out a little bit sketch, TBH. I had chemo the day before I left town and that means blood work, and that blood work revealed my white blood count (WBC - that part fights off infections) was already low, especially my ANC (the about to mature bits of your white blood cells - the ones expected to do the aforementioned fighting). These blood components are among the fastest growing parts of your bod, and thus they often take a big hit from chemotherapies, which then makes you MORE likely to get an infection and  wind up in the hospital, which is on pretty much everyone's anti-bucket list. Anyway. The medical team didn't even want me to have chemo, but we talked it over and decided a reduced dose would be just the ticket. Then, when I mentioned that I was leaving tomorrow for DC, the PA bunched up her lips and frowned at me. I grinned widely and said...please I can leave tomorrow as scheduled, as I have much legislating to do? And she reluctantly agreed, but only if I committed to wearing my oxygen on the plane, wearing a mask on the plane, AND getting all crazy antibacterial wet wipe-y in public while I was out and about, because the WBC thing. This was only a bit more conspicuous than my usual state of affairs (that mask really makes a difference but I'm all about the germ phobia), so I said yes. And then I did it! Here's proof: 

Also, yes, I may have worn my sleep mask
shamelessly on the plane. It was a long ride and
the heart wants what it wants.

Then I arrived and disrobed my face
 and looked normalish. 

All sketchiness resolved and germs kept at bay, I arrived in DC on Friday afternoon and spent a lovely weekend with one of my college roommates, who is one of the Best There Ever Was when it comes to roommates - and friendships! - and also has such a sparklingly clean and tidy home that I swore never to let her enter my own less tidy and definitely less clean home ever again (sorry, Jenny). She did admit eventually that she moonlights as a maid, which explains all of the tidiness but is also a lie she told to make me feel better. (I told you she’s aces!) We hung out and did roommate-y stuff, like eat Ben & Jerry’s, talk about tons of random stuff, watch movies on Netflix, get our nails done, eat take out, read trashy magazines, experiment with beauty products (read my last post!), and hang out with one of our other roommates, who - just for the record - is one of the nicest people in the world and definitely not the snarky one amongst us (that would be yours truly - but you knew that already, didn’t you?).  It was really fun and laid-back and at some point we realized that we hadn’t done much of the roommate type stuff we were doing over the weekend when we actually were IN college, because a) we were absolutely  broke and b) we lived through a time that eventually will be known to all as the Collegiate Dark Ages, or all of human higher educational experiences before Target was cool. Still, we persisted. 

Then I hopscotched over to my friend Anne’s house on Monday. I met Anne at Call on Congress the first time I went and so we had plenty of catching up to do. She also fed me very delicious homemade vegan soup and bread, which made me really wish that Anne was my neighbor and not my Mid-Atlantic friend. I may have eaten a bit more than absolutely necessary and then asked for the rest of the bread to go.  Anne, being a good egg and a generous spirit, was happy to oblige. That bread really came in handy, so don’t forget about it. On Monday afternoon, then, I made my way over to the conference site, happy, relaxed, and satisfied.  

I checked in, met up with and was introduced to All the Best People, including Violet, Peg, and Anna; hung out with my friend Jen (who I originally met in New York back in December); and had dinner at a very excellent and authentic Korean BBQ. Please don’t tell my husband about that last part because he really loves Korean food and I didn’t manage to bring any of it home for him. (If you’re reading this, babe, I’m sorry. It was delicious and they even had prawns.) 

Now, I know you’re asking yourself: why did you just do the “fly in” and not attend the entire conference since you're having much fun and eating delicious foods? There were several good reasons, actually, aside from the fact that I really wanted to see my VA friends. First and foremost, I can’t stress how intense the ConC experience is. For me, it was the first time I had met anyone my age with colon cancer, and also the first time I had met long-term stage four survivors (and not just one or two of them - scads of them! So awesome!).  The hope and sense of community that this experience engenders is enough to take you to your knees even without managing cancer treatment side effects, staying up late every night getting to know people, using your brain in new and very demanding ways for 12 hours or more several days in a row, and then spending an entire day (in which you leave the hotel before sunrise) criss-crossing the Hill to tell your cancer story to people in twelve words or less while urging them to consider legislation that really can and will change lives if it is adopted. And then you go home and process all of that experience and all of those new relationships and what you’ve managed to help make happen and…it’s a lot. It’s fantastic, but it’s really intense. So, emotionally, I didn’t know if I was in a position this year to do the full experience again. Also, my agoraphobia was acting up when I booked the trip. (See that one post earlier this year.) So I sidled on in. Which turned out to be kind of fun, because I surprised several people on Monday night. Knock-knock, Mother F*kcer!  

I also had physical concerns. By the time I finished Call on Congress last time, I was so completely wrung out that I could barely make it to my flight - and I mean that in a very physical and real way. My body was overtaxed and I was suffering from major edema due to some medical complications from treatment, which led to me having to wear my pajama pants (thank goodness they were black and passed as lounge-y pants) on the plane because nothing else would fit. Really! I gained 20 pounds of water weight over three days during that trip. My shoes didn’t even fit right by the time I left. I am not making any of this up. 

I did NOT want this to happen again, and so I chose to take it easy for the first few days, let my body adjust to the humid world of coastal living and - just as importantly - to waking up on East Coast time. It sounds old lady-ish, but I cannot begin to explain how difficult it is for me to get up early in Denver, much less in DC, which is two hours ahead of my usual time. I just can't do it. I physically feel unwell - achy, nauseous..and really sleepy. If I do manage to rise early, I almost always have to head back to bed for a mid-morning nap, and then my energy builds through the afternoon and into the evening. I'm a pre-programmed night owl. I have learned to live with this...and so has my family, who all agree that having Mom see everyone off to school is not a good routine - in addition to feeling blah and tired, I am also more spaced out than usual and completely unable to manage noise, which disrupts the morning jam session of loud music that my husband plays. So this time, I figured that I would try and get up just a earlier each day in DC and then I would be ready for Hill Day by the time Tuesday rolled around. It was an excellent plan...

...but, alas! it didn't work. And by didn't work, I mean, it REALLY didn't work. At all.  I trundled off to bed after the Korean dinner - but before I did that, I prepared. I called for a hotel wake up, set three alarms, asked several people to text me (my brother was particularly helpful, as he sent along the first half of a Bible verse and made me complete it), and then asked several more people at the conference to make sure they came after me if I didn't appear in the lobby. Why so much preparation? Morning. Plain old morning. Have I mentioned that I don't like getting up early? Yes, well. The busses were scheduled to leave at 6:45. In the A of M. This is before sun, logic, and, as far as I can tell, even birds. (It is not before morning DC traffic or cold rain, though, as it turns out.) This time is also 4:45 A of M in Denver, where I actually live, and 1:45 in the Middle of the Freaking Night in Maui, where my sacred sleeping soul is. So, you know:

 

The symphony of alarms was set to begin at 6:04. I fell asleep with ease. That alone should have made me suspicious.

But it didn't. I awoke to the hell that is a hotel wake up call: shrill rings, extra loudness, the perky pre-recorded voice. I was already running late, of course, because I hadn't quite decided what to wear (the weather threw off my game plan) and I didn't have my bag quite packed...But I got up, stumbled around, tried to make my face look less horrible, found shoes that matched...you know the drill. I slipped my meds into my bag and also my oxygen concentrator. I responded to all of the texts and made it to the lobby. I looked around in vain for my Starbucks order, but they had failed to deliver my grande iced soy latte with light ice to the lobby of the hotel (possibly because I did not order one, and also because Starbucks does not make deliveries). I got my FightCRC tote bag, my t-shirt, my schedule, and all the other important things. I dragged myself onto the bus and complained bitterly to my friend Stephen about the early rising, the cold weather, and the extremely loquacious human being in the seat nearby. I had my sunglasses on, in case light seeped in. 

Honestly, I felt terrible when we got on the bus at 6:45. The early morning, the noise, my empty stomach and lack of usual morning drink, plus the chemo hangover from a few days before added up to a lot more stomach churning than I wanted. I had been very careful not to eat anything outside my regular diet or drink too many cocktails. I had taken my medicine at bedtime as usual...But (I didn't think of this until later) I also took medicine when I got up: an anti-nausea pill and a pain pill because I had the headache I always get when I get up too early, plus some rib pain, and I knew I would be on my feet all day and didn't want to be slowed down by discomfort. I tried so hard to cover all of my bases! And maybe that was the problem. I really don't know. 

What I do know is that I did not leave my bad attitude or sick feelings on the bus. We all herded off the bus and into the chill and the rain, and we traipsed a fair way across the Hill, passing the Capitol building, where we usually took the annual ConC picture but were skipping it at that point due to the weather, and loped around to one of the Congressional office buildings. We waited in line outside to get through security, then I managed to get separated from most of the group but we panicked only a small amount, walked through the long long halls and tunnels that connect all of those buildings to each other but good luck knowing where you are or how you got there, and finally wound up where we belonged: at the presser that kicks off the day. Members of Congress - and our celebrity spokesperson, NASCAR driver Scott Lagasse, Jr. (who is a very nice human and liked the Korean BBQ as much as I did but did not invite me to call him Scotty) - were there getting ready to speak, the room was packed full of people wearing blue, and there were breakfast items. I ate three strawberries and one piece of pineapple and put my bag on a chair but decided to stand up because I felt jittery. Then I felt really hot and I took off a layer, and then I felt shivery and I sat down. Then I stood up again and looked around for my people, because I Did Not Feel Good. As a matter of fact, I suddenly knew that it was time for me to ask about bathrooms, because everything was sort of going downhill all of a sudden and I was hot and jittery and shivery and also feeling a little dizzy. Uh-oh.

Now, we had our first meeting of the day at 9:15 with Senator Michael Bennett, and I really wanted to be there because we were going to ask him to be a member of our Congressional Committee due to his dedication to our cause. Our next meeting wasn't until 12:30, so I figured hey, I'll just take a breather for a minute (it was really hot in that room) and then I'll be fine and I'll go to the meeting and then, if I still don't feel well, I'll zip over to the hotel, take a nap and be back in time for the 12:30 meeting. No problem! Yes, no problem. I smoothly got up, whispered to the CO delegate leader that I had to run to the loo and wasn't feeling great, but would be back, and took off into the hall (ed. note: I have been informed that in reality I tottered sickly over to the edge of the crowd, nearly ran into someone innocently standing there, and left several concerned people in my wake as I bolted.). The bathroom was just down the hall, so I stepped in and just stood there, trying to figure out if I was going to be sick or if I just thought I was going to be sick because I had gotten up so early. 

Definitely the latter, I decided, and kept standing there. 

Definitely, definitely the latter. 

Mind over matter. But I would sit down on that handy toilet just in case. 

Yep. Everything going well. (Whew!)

Or not.

Nope. 

I got sick just in time for the women talking in the bathroom to get really quiet. Thanks, ladies! Then I got sick again for good measure and to make sure those women had something to talk about all morning at their desks. 

Thank God for cell phones. I texted my friend Jen, who was a true angel and brought me a cup of ice and some crackers that she magically produced from her own purse, or maybe her bosom. It was fantastic, however it happened. I drank water. I drank ice water. I ate one cracker. I got sick a whole bunch more. Then I texted Kristin, the CO delegate leader, and informed her that I wasn't going to make it to the meeting at 9:15, because it was 8:50 and I was still getting sick every couple of minutes. She was very kind and wouldn't even let me say that I was a terrible delegate who didn't even make it to the meeting, even though that was completely true. She also let me give her advice about when to leave the press briefing, even though she had, of course, already left the press briefing because she's been at ConC seven years running and is quite familiar with the distance and the hallways that just go on and on and all of that. 

After about 20 more minutes of sickness, I decided that I had to be finished being sick, because, well, what else could be in there? I wrote myself a strongly worded letter in my head, tidied up, and left, intending to leave the building and get a cab like a sensible human. But after three minutes, my body decided that we needed to take a peek at another bathroom, so I found one right away and admired the retro vibe...and got sick some more. At least this bathroom was empty, so no awkward pauses. It was also clean - it was the very beginning of the day, remember? - and so I used up my last vestiges of energy getting together a MacGyverred version of an airplane sick bag that consisted of the new tote bag I had received and a clean garbage can liner (my apologies to the janitor of the Russell Senate Building). Then I ootched my way down some hallway, Lowly Worm style, experienced a small miracle in which I found a doorway that led outside to a street, oozed into a car and pretended to relax while actually very uncomfortable and hoping that I would not have to use my tote bag invention. 

Sadly, I discovered that the invention worked rather well. Multiple times. I also politely rejected, twice, the driver's kind inquiry into whether he should drive to the hospital rather than the hotel (Him: "Are you sure, miss?" Me: "Yes, but...*necessary  pause as I tested my invention again*...thank you."). 

Then I staggered to my room, asked the cleaning lady to leave and gladly accepted her worried offer to help by dispatching her to get me more ice - and then inspected the cleaning lady's work in the bathroom. I shivered a lot and turned the heat up to 74, which did not help me get warm. After a while, I ordered two sodas and a plain bagel from room service, cried a lot, was comforted by my mom and my husband via phone and text, and mercifully fell asleep. I finished the performance by sleeping almost all day. I did wake up and eat some of Anne's bread, and I also drank the Sprite delivered by room service. (They also sent ice, by the way. I guess ice in a crisis is a legitimate thing, you guys!) The Key Bridge Marriott has remarkably soft sheets and excellent pillows. I really can't say enough good things about that place. 

SO! Let's recap. I convinced people to fund my trip to the Nation's Capital. I heedlessly flew to DC against the recommendation of my medical team, and looked like a germ obsessed maniac while doing so. I prepared for Hill Day very deliberately and organized my entire trip around getting enough sleep and pre-empting every possible problem. Then, I managed not only to miss every delegate meeting and the actual advocacy, which was why I flew out in the first place, but also to completely embarrass myself by throwing up all over Capitol Hill like an intern who spent too much time at happy hour.  Slept most of the day away swaddled in soft sheets in the midst of a little nest made of pillows on top of my bed and then attended the celebration dinner (where I ate part of a roll and some rice), which, let's face it, I didn't deserve to attend, because I had failed to do anything that should be celebrated. Now I've outed myself and shared my experiences with you all, because apparently I cannot get enough of humiliation. 

And oh! Did I mention that I missed my 12th wedding anniversary to be in DC? 'Cause I did: March 20th was our anniversary as well as Hill Day.  Did I also mention that I nearly missed my first born's 11th birthday as well? Because her birthday is March 22nd, and when I awoke on the 21st in DC with plans to fly home that afternoon, I discovered that a spring winter storm had arrived (well, sort of - let's just say that the Chicagoan in me was QUITE surprised that the city was all closed up), Reagan airport had cancelled all flights, and I now had a ticket to nowhere. Oh, and I was supposed to be surprising my daughter with tickets to Hamilton. ON HER BIRTHDAY.  

But let me interrupt my bitching to tell you some things that are even more important: first, cancer really sucks and second, even the best laid plans go astray. Third, if cancer has taught me anything, it's that makeup and fortunate lighting can make you look halfway decent even after a hellish time in the bathroom. Because here I am, all ready for the celebration dinner. 

Let's be honest:
"boot and rally" is the cancer patient's war cry.

Yes, there are watery happy endings of sorts to this whole crazy escapade: thanks to FightCRC's Michell Baker and a wonderful woman named Kelly who sounded like Estelle from "Friends" and arranged travel for Call on Congress,  I was rebooked successfully on a flight out of Dulles and made it home on the 21st in time to kiss the kids good night! My daughter celebrated her birthday this morning, the 22nd, by opening gifts from family, including the aforementioned tickets and I got to see her beautiful, astonished face as she did so. Now, that was amazing beyond measure. Look at this gorgeous girl. Yep! This is the face of eleven today. The face of love, courage, curiosity, and every single best good thing: 

She's just the best. But in case you need more cheering, I leave you with this bit of my favorite prose poem (from Max Ehrman's "Desiderata") and pictures from the celebration dinner, where my fellow cancer warriors and I hugged and talked and danced and lived out loud, because life is there just waiting for us to reach out and grab hold (once we've washed our hands of toilet germs and put away the rigged barf bags) and we are the chosen few who find themselves saying YES to absolutely everything life has to offer, even when we'd really rather say UM, NO! ARE YOU CRAZY?! because, well, we don't have much of a choice:

...With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy. 

The photo booth at ConC is the best part of the whole conference.
I know that's a bold pronouncement
but it makes for a lot of awesome pictures.

...Like this one, featuring me in a poop hat,
Evan eating cookies, and my new friend and
fellow lucky Vectibix taker, Peg. Peg also likes tropical islands.

This is Jen. Jen is not only an amazing friend
 and fellow p-vivor (five years and going strong!)
but also the Hill Angel of Ice and Crackers.

My beautiful, kind, most lovable friend Elaine,
who always makes me feel so loved
and also delights me with her stories
about the horses who live on her ranch.

Stephen, who is the best poster boy
 for immunotherapy success that the world has ever SEEN
and a hella hairdresser and friend besides!

Evan and I on Monday night. This guy is 17 years cancer free
 and is  one of the nicest, most talented photographers I know,
which is saying a lot because I know a fair number of photographers. Oh, and
-yes! - a lot of nice people, too.

So there you have it. ConC 2018 is in the books, and what an adventure it was. I'll be back next year, Congress, and I'm not going to let any barf stop me next time, so stay on your toes and perhaps consider having a steam cleaning vacuum thing on hand. 

PS FightCRC, if you still want to claim me, can I get a new tote bag? I sorta left mine in the hotel room.