Down Days and Super Heroes

Wanna know a secret?  

I have down days.

If you see me today, I'll probably still be smiling... but I was awake a good chunk of the night, achy and feeling sorry for myself, and still couldn't quite shake it off this morning when I woke up. And I don't even feel "that bad" today, so really, there's no reason for the funk...

Except that I'm human. I'm a person, and not a super hero, so I can't actually fight this fight every single day and win. Some days, I just don't feel like showing up to the fight, and I just want to hide. Or cry. Or both, maybe.

But... this morning, I got up and took Jay to Vacation Bible School at Memorial Baptist Church. Before this week, we've never set foot in there, although I've driven by a few times. It's a beautiful, sprawling red brick church with a big white steeple that chimes (which Jay loves hearing when I pick him up at noon), and it's filled with lots and lots of excited kids and shuffling parents and smiling volunteers this week. 

Tuesday was Jay's first day, and although we'd talked about it and he'd been excited, he told me he didn't want to go. I was firm and insisted, and told him if he didn't like it, he didn't have to return on Wednesday. The first whispered words out of his mouth when I picked him up? "I loved it and I want to come back tomorrow!"

Each day has a different theme. Today's was super heroes, and when I picked him up, Jay informed me that Jesus is the best super hero there is: "I learned that today at vacation bible school!" he proudly reported. Kid, you're onto something. A super hero's job is to swoop in and save the day when the regular people have done all they can do, and just can't find a way to win the battle.

So today, I'm just a regular person, doing all I can do, and yet still struggling and feeling more a failure than a success... and, oh hey, there's Jesus, swooping in. Here, right by me, to uphold me through this battle, this journey that is gonna take a while. 

I'm not talking about the metaphorical "Jesus is everywhere" talk - although, I do believe that Jesus is, in fact, with me always, because the Bible says so. 

But right now, I mean in a more concrete sense. Jesus's words are in me, and when I'm feeling low, He touches a friend and hints that maybe they should reach out to me, right in that moment that I'm feeling a little damp-eyed, and remind me of the truth that regardless of what is going on and how I'm feeling, there is always always always something to be thankful for, and when I choose to focus on that bit of goodness, even if it's tiny, that small-but-bright feeling of hope and grace will sneak in and light up my soul, little by little, and help me pull through today's dark patch. 

That, friends, is Jesus, being a super hero. Working through regular people, to reach me right when I need it. God is good, y'all, and I can't do this on my own. Thanks for being a part of my journey, for lifting me up when I just can't.

I have set the Lord always before me; because he is at my right hand, I will not be shaken!

Psalm 16:8

Bye Bye, Blue!

They said it would happen. 

Dr. Patel said I could expect my hair to start falling out between two and three weeks after my first infusion.

She was correct. Over the last couple of days, it was coming out way faster than normal, and speeding up, so I shaved it (also at doc's recommendation).

Before treatment started, I felt like it wouldn't be that big of a deal. I figured I'd just have a bald head, or wear a scarf, and it wouldn't really impact me much.

And then I started treatment, and after a couple of days, my hair started to HURT. Anytime my hair moved, it hurt. And hair moves a lot.

After that, it started to itch. And also, I broke out with an awesome rash from one of the medications that looked remarkably like horrible teenager acne - face, chest, and yep, my scalp. And that hurt, too.

So I thought many times over the last couple of days about shaving it because of those things, but of course part of me was holding onto the "maybe she's wrong" line of thinking. But, it definitely made me less attached to it.

Until it actually started to fall out quickly a couple of days ago... And then I thought, I'm not sure I can handle this. Monday night, I scheduled the appointment for today (Wednesday) and lost sleep over it for two nights. This morning, on the way to the salon, I thought I might puke. I even skipped mascara because I totally expected to lose it and bawl during the shaving part.

And then a funny thing happened.

It wasn't a big deal. 

I mean, it wasn't my favorite haircut I've ever gotten, but I didn't cry, and I am not as upset over it as I thought I might be the last couple of days.

Luke isn't a big fan. Jay was absent-mindedly petting my head while talking to me earlier, so I guess he's alright with it. Crispin was looking at me like I'm crazy - he convinced Mom to pick him up and let him smell my head, then he licked my ear and he's been fine since then.

So anyway, that's what's new with me. I'm feeling fine now, and have been since about the middle of last week, so it seems like about a week and a half of feeling crummy and then things get back to normal.

Round 2 is Monday. Specific prayer request: for normal results on some liver enzymes that were elevated last time. They need to stay the same, or preferably go back down to normal, so that we don't have to delay Round 2.

Excuse me, have you seen my pillow?

Hey! This isn't life-alteringly terrible like I anticipated. It's not peaches and rainbows, but I haven't thrown up (or even felt nauseated) so I'm calling that a huge win.

Naps, on the other hand, are my friend. More like, my long lost soul sister that I crave more and more time with each time I have one, ha. I've never really been good at snoozing on the couch with other stuff going on around me, but I'm quickly perfecting that skill. I can integrate the kids' game and a TV show and James & mom's conversation about how hard I'm sleeping into one cohesive dream that I'm aware I'm having and tell myself I should wake up... but still not actually be able to get up for a few more minutes.

I also fantasize often these days. When I'm walking (which I'm 6 days for 6!), I imagine whether that grass right there is as soft as it looks and if I should sit there for a moment. In the evenings I contemplated just how cloud-like my pillows and blankets will feel when I crawl into bed. When I finish eating, I remember vividly how comfortable the couch is.

6 days down, 120 to go. 

Quick Update - So Far, So Good!

So it turns out, it wasn't just nerves keeping me up Sunday night. I take a steroid for 3 days (S-M-T) at the beginning of each cycle, and goodbye, Sleepy Town! 

I was up this morning about 5 am, and if you know me at all, you know that is NOT MY STYLE! But, I felt great so I got up and enjoyed the time. I snacked, took the precautionary anti nausea meds, read my Bible, walked around the pond twice, and got back right as everyone was waking up. I made some yummy scrambled eggs with chopped up salami and bell peppers, and they were delicious.

I truly felt great today. I made sure to take it easy, and I did nap this afternoon, but it wasn't major exhaustion, just more like, Oh, I probably won't sleep tonight since I'm still taking the steroid, so let's snooze a while. And it was pretty lovely, I gotta say.

I was able to eat well today, and things tasted great, and no nausea, praise the good sweet Lord!

I got my neulasta booster injection this evening, and besides the beeping and annoyance of a LOT of sticky residue, it was totally no big deal. A semi-common side effect is flu-like body aches, but I've got preventive meds for that, so I'm praying it's not an issue for me.

Oh, the worst part of the day... Our water company is on day 2 of a boil water notice. Tomorrow they're going to be working on the lines from 8-5 and we may lose water completely, and will still be on boil water notice when they're done until they can test it. So that's real cool of them, since you know, chemo lowers your immune system function. But, we are being diligent with the boiling and bottled water, so it shouldn't be more than an inconvenience.

I had some pretty important thoughts this morning during all the quiet time, and I want to share, but I'm still working on getting the thoughts into cohesive words. Just, man, to summarize... I have so much peace right now, and it has nothing to do with me or my actions or even what the doctors say, and everything to do with the truth I know deep inside. More on that, soon, I promise.

Thanks for all the kindness, y'all. Sweet words, texts checking on me, cards and goodies in the mail, groceries and dinner brought by... God is using your kindness to build me up, please know that. 

Confidence

Confidence

Sanctus Real

I’m not a warrior

I’m too afraid to lose

I feel unqualified for what you’re calling me to

But Lord with your strength

I’ve got no excuse

'Cause broken people are exactly who you use

So give me faith like Daniel in the lion’s den

Give me hope like Moses in the wilderness

Give me a heart like David, Lord be my defense

So I can face my giants with confidence

You took a shepherd boy

And made him a King

So I’m gonna trust you and give you everything

I’ll be a conquerer

'Cause you fight for me

I’ll be a champion claiming your victory

So give me faith like Daniel in the lion’s den

Give me hope like Moses in the wilderness

Give me a heart like David, Lord be my defense

So I can face my giants with confidence

I’m gonna sing and shout and shake the walls

I won’t stop until I see 'em fall

Gonna stand up, step out when you call

Jesus, Jesus

I’m gonna sing and shout and shake the walls

I won’t stop until I see 'em fall

Gonna stand up, step out when you call

Jesus

So give me faith like Daniel in the lion’s den

Give me hope like Moses in the wilderness

Give me a heart like David, Lord be my defense

So I can face my giants with confidence, yeah

Give me faith like Daniel in the lion’s den

Give me hope like Moses in the wilderness

Give me a heart like David, Lord be my defense

So I can face my giants with confidence

I'll face my giants with confidence

Songwriters: Matthew Ross Armstrong / Jordan Michael Bailey / Tony W. Wood

Confidence lyrics © Sony/ATV Music Publishing LLC, Universal Music Publishing Group

This song came on my Pandora playlist while I was walking this evening, and holy wow, it spoke to me. I don't have adequate words to say about it besides wow, but I had to share.

Today went really smoothly. I started the day with blood work - they calculate dosage for each medication based on your kidney function, for every round. After the labs came back, they gave me some pre-meds for nausea and to prevent allergic reactions. Then, we did the two biotherapies (Herceptin and Perjeta) followed by the two chemotherapies (Taxotere and Carboplatin). H was 90 minutes, and the rest were 60 minutes. In between each, they flushed the lines, so that added a few minutes. Overall, it was an 8-4:30 day. But, I had a nice bright room!

James went with me. We watched some TV, and then played a fun card game called Odin's Race. He won one and then we tied one, and then it was time to go home!

I was so nervous last night I could barely sleep. But today was really easy. Honestly, the worst part was removing the bandage over my port at the end! 

I came home, ate a delicious dinner, relaxed a bit, then walked a mile - which is quite a feat since I've been really sedentary since surgery. It was very slow, but I still managed it! They told me today that walking every single day, at least 30 minutes, is vital - it helps the meds work, helps my body's healthy cells recover, helps alleviate side effects, helps my mental state... So, walk I will!

Days 2-4 have the potential to be the roughest in terms of side effects, but Dr. Patel has said over and over that this combo of drugs is predictable and manageable, so that is what I am praying - join me!

Chemo Day 1 down, 5 more to go! 

After today, I feel like I've totally got this under control. If my attitude changes, won't you please remind me of that feeling and lift me up again? Your kindness really does make a difference to me!

Chemo Day 1

Well, it's here - Chemo Day 1 is tomorrow. That's Monday the 4th. I'm nervous as all get out, if you really wanna know.

But I'm ready. Ready to start fighting this battle. Ready to be one step closer to being done. Ready to be one step closer to living a normal life and holding my boys and not worrying about what the future holds or the logistics of appointments or the severity of side effects. 

I can do all things through Christ because he gives me the strength.

I can give all my cares to Jesus, because he cares for me.

I am a daughter of the most high king.

All things work together for my good because I love the Lord.

I am strong and courageous because the Lord is holding me up with his righteous right hand.

I'm not actually ready for tomorrow, but I'm ready as I'm gonna get, because God is with me, so who or what do I have to be afraid of???

What can you do for me? Keep praying. And if you have a specific verse that's your go-to when you need to be built up, please share it with me here!