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March
31
2019

Normal

Normally, I wouldn’t be awake at 6:06am... like ever. 

Normally, on a Saturday night/Sunday morning, I’d be sleeping 💤 pretty heavily around this time. But I can’t stop staring at this magnificent little being beside me. You see, the best part about my weekends is that my favorite girl in the whole entire world spends the nights in my room. It might not be the kind of sleepover that normal little girls look forward to, but it’s quickly become a beloved tradition for my girl and me.

Normally, she will come home from whatever activity she has done on a Friday or Saturday, and she will  beg for a movie.  I’ll meet that with a requirement for her... some chore, or something domestic that she has to do before we can watch.  Something to teach her responsibility and/or time management skills. Then we will select a series or a movie and we will start watching, snuggled in my bed. But, tonight, when she came home, I had fallen asleep. I vaguely remember her asking for a show, and me informing her that I was asleep and couldn’t watch with her. 

Normally, I don’t sleep all night. Especially this close to a chemo treatment. I have to wake up for various... things.  Tonight was no exception on that front, but when I woke, there was a little girl, snuggled next to me, already asleep, who had put herself in my bed, followed her own sleep routine, and made her place next to me.  

Normally, I wouldn’t dare post a picture of her head on a pillow without a pillowcase. *gasp* The horrors! But, this little girl... this most extraordinary little girl, she transcends normal in every single way. So what if she fell asleep without a pillowcase? It was important to her to have her sleepover.  Even if it wasn’t bursting with television and popcorn and treats.  Even if I didn’t have my arm around her holding her close. And it touched me quite deeply that she doesn’t just do it for those aforementioned things. She wants to spend time with me. Even if that time is spent asleep. 

There is nothing normal about our lives. I gave up trying to create a normal environment for her years ago. It’s just not a priority. But you know what is?  Finding our own normal. And making the most of this most not normal time in our lives.  I often lament the lack of normalcy I can give her. But, nights like tonight?  I stare and think and ponder how those voids will impact her development and growth and how she will see everything so differently from someone who had normal at her age, and I pray that it is an advantage for her when she encounters the millions of not normal situations she is bound to face in the future, with or without me beside her. 

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March
27
2019

Stupid Pump

Idonwanna. 

But I will. 

My next 3-4 cycles will be with the 5FU pump attached to me for 46 hours. It sucks. Badly. But, it works.  I’m ditching Avastin and switching to Erbitux because after genetic testing of my tumor, it should be more effective. 

Also, here’s a good dose of motivation for me: 

February
1
2019

Things I’m Excited About

1. T got accepted to Camp Kesem. It’s a sleep away camp that was specifically designed for kids whose parents have cancer.  I’m excited because I think our little social butterfly will benefit greatly from being able to connect with other kids that are experiencing a similar life situation. And we think it will be tons and tons of fun. 

2. I discovered a place called Cancer Support Community in Phoenix.  It’s a place where I can go and connect with others without a support group. Support groups aren’t really my cuppa tea. But there is art and meditation and all kinds of other things going on, some things for T as well. I am really digging it. 

3. Valentine’s Day is coming. Decorating the front porch with T has been a great.  Lots of Pinteresting and lots of cute memories we’ve made. Now we are making her valentines and we are having so much fun thinking of what they should say. 

4. T has a birthday party coming up. Now, this sounds horrible, but I always want to go big or go home for her parties. I never know if I’ll be here for the next one. So, they are important to me. We are planning a RoyalTea at the park, it should be loads of fun.  We’ve already gone location scouting, and found the perfect tree to setup underneath. 

5. Snacks and drinks I’m currently in love with:

• Cracker Barrel White Vermont Cheddar Cheese individually wrapped cheese sticks.  These are not string cheese, just a hunk off a brick, already prepackaged and easy.  They’re great to have in the fridge. 
• San Pellegrino Blood Orange or Pummelo sparkling juice. I’ve extensively tried other brands and formulas the last few months, and these are by far the best. They’re in a pop can with the energy drinks (idk why) in a 6-pack. They help settle my stomach so much, it’s crazy.  
• Pistachio Oreo Thins.  Blame Tawnya. These are the bomb. 
• Citrus fruit. ‘Tis the season and all. I am loving all of the tangelos and grapefruit, sweet oranges, and tangerines.  I can’t seem to get enough. 
• Lemonade.  I drink a lot of Simply Lemonade.  It’s awful for hydration, but it keeps me drinking.  And that’s a good thing. 

6. I’m legit learning Turkish now.  I play a game called King of Avalon, and have played it for 2 years with the same people.  I started a different account with a different group last year because a friend invited me to their kingdom.  They speak Turkish, Andy only a few are English literate.  I’ve picked up quite a bit, but now, I’m taking online lessons.  It’s really fun and it’s challenging, but challenging my brain is a great thing to do. And best of all, I do it when I feel like it.