Punk Kid in D.C. {DAY 2}

Wherin the itchy hat comes off...

One of the evil side effects of chemo that no one really talks about...because nausea and neuropathy get ALL the attention; insomnia. Day 2 of 4, and I've slept maybe three hours. While sitting trying to listen to a discussion I start to doze, but the minute I get to our room my mind starts buzzing. I timed my non-naps around topics of interest or participation, but grateful Fred was there to be my second set of ears to fill me in on what I missed!

Aside from the insomnia, I was also in a lot of pain. Honestly, I didn't even realize the pain level until I didn't have access to a HOT shower. Apparently one hot shower a day is enough to relieve my muscle tension, but our hotel shower was lukewarm at best. I have all the oxy and hydros, but nothing for muscle tension. Thankfully my nurse was able to call in a muscle relaxer to a local pharmacy, and seriously save the week!

After picking up my script (and one insane Lyft ride), I returned just in time for the group share. This is where you stand up in front of 150 other attendees and share your story. And this is where the nerves kicked in...public speaking is not my favorite. You guys know how much I hate spiders...well, I'd take a sit down meeting with a spider over public speaking. But as the stories continued I began to realize this is my tribe, they fight - they are strong - they hurt - they cry - they are angry...just like me! The nerves fell away and I simply listened to my tribe.

Usually I would try to prepare something in my head, but I was so enthralled by everyone else's story; by the time my turn came, I was blank. I stood up. I was wearing a hat instead of Pearl (my wig), and it had been itching like crazy all day...so that's the first thing that popped into my head. I took it off. I was bald. And then people started to clap...then they started to stand. And I silently thanked Daddy, for a legacy and story worthy of a standing ovation. For me, ditching the hat was symbolic. I was breaking open and bearing my truest self. If all those before me could bear their souls, I could too! I can't fully recall my words, but I do remember explaining the hurt and heartbreak of having to turn to Fred and tell him he'd have to do it again.

Poor Fred had to follow that show, but as always he is the rock of this relationship. (Clearly, making me the rolls.) He spoke of bringing Daddy into our home, and that although I asked it wasn't even a question - we were going to be the ones to care for and love him through. I am forever proud of the man I married, but it's a special thing to witness his story touch other survivors and caregivers; people that have personally lived similar stories.

From that point on, I never covered my head again (except when outside, because winter). I try looking back. To that Heather that just lost her dad, grieving; for months, she couldn't go a night without reliving his final week. She had given so much of herself, she didn't know what to do when he was gone. And now, the level of selfishness I feel...knowing Fred is giving of himself in the same way. We both needed this release. This welcoming. Into a tribe of people that are fighting to improve and save lives!

Punk Kid in D.C. {DAY 1}

The chemo goblin is slowly leaving and I'm attempting to begin writing about my Call-on Congress week.

DAY 1 - Meet & Greet

Being an introvert a "Meet & Greet" is essentially my worst nightmare. Nevertheless, our friends and family and strangers sponsored this trip so I was determined to be present every minute! The first person we met was event photographer and fellow survivor, Evan Cantwell. The photo of me with the blue scarf & feather, Evan took that! He immediately put me at ease as we shared stories and laughed about the ostomy diet. (Corn chips are a no-go!)

The second person we met was Andrew, whom I would describe as FightCRC's cheerleader. He's that kid at the sleepover that stays up all night and STILL has energy the next morning. At the closing dinner, he performed his own one-man version of some N'Sync song. I think. (I never purchased a boy band album post-NKOTB...pretty sure that makes me an OG.) It was Andrew that introduced us to our mentor, Walter.

Walter has soul. You know those people that you speak with and just know there's something deeper; like he knows exactly why he was put on this Earth, and it was cancer that set that voice free. Walter's story is powerful...God's hands all over it. Because he was aware of the blessing that his cancer was found early, Walter pays it forward by advocating for those Stage IV fighters that can't advocate for themselves. He further explained what to expect over the next few days; telling us it was as simple as sharing our story and not being afraid to show emotion (tears, anger, whatever it comes out as). It can't be that easy, right?! There's got to be a certificate or handshake...advocating can't be that simple!?

As we left for the evening, I ran into my favorite Instagram find Sarah DeBord (@theSarahDeBord). Sarah is a Stage IV survivor and thriver! Emphasis on THRIVE. I complain about my post-chemo joint pain and ankle swelling. Sarah has "fat lefty" (lymphedema in her left leg). Dumbed down version; she had so many lymph nodes removed her body has a hard time getting rid of excess fluid and it builds up in her left leg. BUT that doesn't stop her from living. She just completed her 107th round of chemo and travels and advocates and inspires little 15th rounders, like me.

And yes, if you're reading this trying to plan for Call-on Congress 2018, we Uber'd to the Meet & Greet. The tavern was less than a 1/2 mile from the hotel, but it was super cold and I only manage 1/4 mile (no hills) before needing a break. Pause while I laugh at myself thinking I would be able to hit a walking trail after chemo infusions. Ha.Ha.Hahahahaha. Ha!

So there you have DAY 1 of 4.

To all those that donated and made this trip possible, we honestly cannot {Thank You} enough!

For those secretly wondering why we asked for support, or why we don't ask for more financial support:

When facing chronic illness, you quickly evaluate expenses and priorities. Obviously much of our disposable income now goes towards medical bills, but we still allow for a small vacation budget because we desperately need a break from doctors offices and hospitals and cancer. After my diagnosis, our once week long vacations became extended weekends or tag along and split costs with the Hicks's. (Thank you Hicks's!) For us, Call-on Congress was not a vacation but work. I couldn't ask Fred to financially support a trip that didn't give him a minute away from the cancer bubble. Hence the call for sponsors.

Late last year I finally accepted this illness as chronic, and applied for disability. Yes, nearly two years in before I was willing to accept that I wouldn't be returning to work anytime soon. That money will go toward bills, repairs we've put off, and travel. I told you guys Sarah is my inspiration; I too plan to live & thrive & travel while fighting Stage IV colon cancer!

Sharing the light...

With each hard turn that comes our way, it's made clear God has already carved our path. When I desperately need a gentle reminder HE is steering this ship, an angel appears! From complete strangers going out of their way to tell me I'm beautiful just as I was loosing my hair for the second time - to unexpected gifts and cards - to sending the perfect friend to help me work through my darkest struggles; His timing is always perfect.

For those that don't follow along on Facebook; after an extremely hard round of chemo, I feverishly started working towards improving our bedroom. Feverishly, because every other week I disappear and the chemo goblin takes over. And you guys, goblins canNOT decorate. It's a good day if they brush their teeth. Not. A. Joke.

Since I will be spending a lot of time in our bedroom, I've decided to turn it into a retreat. A happy and fun and cozy and calming retreat. The Knight and I have discussed new furniture for years, but never found anything to our liking. Thanks to some recommendations, I started looking at furniture on Macy's website. Because on chemo you don't have energy to shop. You pre-shop, create a list, and have a game plan.

As with furniture, we've also struggled to find a new comforter. The comforter has eluded us even longer than furniture; at least five years. FIVE YEARS! So after finding a few furniture options, I switched over and started looking at comforters. Little did I know, God was about to send us another angel.

In that very instant, a FB message was being composed. A couple hours later as I read the note, I realized the timing. As I was randomly searching for a comforter, God sent us an angel to cover the cost of a new comforter.
I. Was. Floored.
It was like a one-woman revival in my house.
And the tears...
My God Is Good!!!

You may think this is where our story ends.
We find a comforter and our sweet angel ships it off tied with a bow.
But you would be wrong.
Oh so wrong!!!

After sending our angel the comforter details, she asked about sheets. Not fully understanding her implication; I let her know it was a bed-in-a-bag set, and that we have two sets of nice/soft sheets. Then she asked about a rug...

Backstory:  When we moved into our place, there was a slight painting mishap. I'm a little bit on the clumsy side, your standard fall UP the stairs clumsy, so we've always had a rug in our room to cover my whoopsie-daisy. Did this angel know we've always used a rug? Nope! She's never set foot in our bedroom.

You guys. Prepare yourselves...
The rug was the very FIRST thing I bought. It was purchased before we even went furniture shopping!!! If you still aren't moved, you're dead. Because, my friends, that stuff is powerful! Get on your feet walk around the house because you can't sit still...POWERFUL!

Thank you kind angel for listening to His call. Thank you for another reminder that this story is much bigger than me and my illness. Each time we lay our heads down or step foot on our rug, we'll be reminded God is in the details. I don't know where this road goes, but if He cared this much about a comforter & rug...it must be good! I'm so excited to see what happens next.

Friends. If I can face this diagnosis and a lifetime of chemo (until God decides otherwise), and still find beauty and goodness and kindness in this world; certainly you can see it too! If it's this good and beautiful on this side...can you imagine?!! But don't fret, if you're having trouble finding the beauty, I promise to keep sharing the light!