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!

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!

Chemo Vacation

In preparation for the upcoming surgery, and to make sure my blood levels were normal, my last round of chemo (#6) was July 13th. My pre-op & colonoscopy are scheduled this week. Chemo free for nearly a month?!! Hello vacation!!! 

The FOLFOXIRI was so rough I decided to throw a halfway party for myself as reward. I needed desperately to acknowledge and celebrate my success. To all my dear friends and family that made the drive (and those that were there in spirit), thank you! 



The past two weeks I've spent my time visiting with friends that I haven't found time, or I had to cancel plans due to chemo. And getting some time in with the nieces and nephews while I had energy. No joke. The last time I played puzzles with Brooklynn I was so weak I had to tap out after two. Add chemo brain to the mix. I got schooled by a four year old! It wasn't pretty. 



TMNT with Rylan. Candyland with Brooklynn. A carousel ride with Jackson. Mother's blueberry cobbler. My spirits are fully recharged. I'm feeling strong and ready for the next surgery. 



In other news, I took the cue ball out in public for the first time. The wig is too hot and miserable to wear outside in the summer. I honesty forget I'm walking around bald, at least until I notice the stares and double takes. It's okay. Everyone has a cancer story, right? I convinced myself I reminded them of their loved one or friend with cancer. 

You know what would be great, if those stares were followed with a word of encouragement. Being on this side has made me rethink my own reaction. Tell her she's beautiful. Tell her she's strong. Change her story. Imagine. If someone had the courage to reach out, my story would be completely different. Our words have power, use them well. 

Inspired

Last night I randomly decided to watch Bryant Gumble's sports thingy on HBO. Yes, pretty sure that's the actual name of the show. (Probably not.) It was a segment about the domestic violence rate within the MMA. They interviewed Christy Mack who was beaten by her ex and sporting a bald head. And the reason she gave for being bald, it signified a rebirth. 

Well, isn't that a lovely way to think about chemo and going bald!?

I have never watched Bryant Gumble's sports thingy. I have never watched more than 30 seconds of a MMA fight. I have never heard of Christy Mack and something called a War Machine. A quick Google search and I learned she's apparently a porn star. The ex hacked her hair during the attack. She shaved the rest. And she too struggled with her new look, "It's hard to look in the mirror every day and see someone you don't know." 

My goodness! I'm always fascinated by how and whom God speaks through. So many would ignore her simply because of her occupation, but I deeply thank her. I have struggled with my hair loss. I needed desperately to rethink my situation. I needed hear those words. From a porn star beautiful human being. 

So here I am

Fighting

Proud 

Strong

Being reborn

And I know one day

me and this bald head

will feel beautiful again

Chemo Round 2

Dr. H decided to drop my 5-FU (the chemo bag I carry for 46 hours) down to the European or American dosage (whichever is lower). I gave a little fight. I didn't want to drop dosage. I want to kick this cancer's butt. I can do this! He reminded me: slow and steady wins the race. 

Even before the chemo I started out with associative nausea. By this round they had prescribed the kitchen sink of nausea meds, and I started taking them. Seriously I'm a walking pharmacy. I still got chemo drunk, but no nausea, and no wheelchair means a successful infusion. With the new meds I was able to keep the nausea under control, and felt better after day 7 vs 14!

And then the hair thinning started. Best way to describe it is imagine taking a brush through a shedding pet, and being left with a brush full of fur. That's exactly what was happening. Hair was constantly falling out. I was getting tired of them falling into my food and having to pull them out of my mouth. Just seeing the hair all over my clothes was breaking my heart.

I had been trying to get a chemo cut for months, but we just couldn't find time. I finally made an appointment with a place that does both cuts & wig consultations. Before the appointment I took a photo of the top of my head. It was terrible. A haircut would be a complete waste of money.

It was time to shave. 

I wish I could say I was strong, but this was by far my most mentally breaking moment. I wasn't expecting to shave. I was told thin. Later rounds. Not after two rounds! When the unexpected happens, I sort of lose it. I've always been that way. I desperately wanted to be sick without looking sick. 

The following week I found my wig, and was working up some courage for the big shave. My aunt had planned on coming over and helping, but it got to the point I couldn't stand looking at all my stray hairs. Fred took over. I could tell he was ready to help me have fun with it, but I just couldn't. My hair was my crown. My most favorite accessory. My identity. I closed my eyes and fought the tears as I felt myself disappear. 

I look in the mirror and see someone I don't recognize. On the bad days she looks like Uncle Fester. On the good days she's the toughest damn chick I've ever met. But for the first time in her life, she doesn't feel confident or beautiful.

I've learned I'm most uncomfortable with pretending the wig is my hair. I get compliments, but I don't know how to handle them. I shrug a thank you, but my insides scream 'IT'S NOT YOU'! When I get compliments in the hospital, I'm quick to explain it's a wig. And then I get "oh, that's a nice wig - you spent money on that one!" And somehow that makes me feel better. A little confidence booster. Being myself. Being authentic. 

It's a strange struggle between wanting to be authentic and hide the fact that I'm sick. The truth is I hate feeling/looking weak, and I haven't accepted this new version of myself. When your body changes so vastly, over such a short period of time, it's harder to accept. Fred does everything imaginable to help, but he can't fix this. 

I've cried over the hair loss a lot. One night I was expressing my fear of loosing eyebrows & eyelashes, it feels as though they are the last feminine features I have. Fred looks at me and says you'll always have your eyes, so I laughed through the tears and added boobs to the list. I love him for always helping me laugh through my sorrows.