Zen and the Slow Leak

My New Year’s Resolution sprung a slow leak that morphed into a gaping hole.

Ok, so in Australia it is Friday…but not last Friday. Nor is it Tuesday. Blog Fail warning horns are blaring everywhere here. Each day I have written BLOG in my bullet journal in increasingly larger letters. Today the word is about an inch high. And fancy.

Even now, I am forcing myself to write—mostly because the alternative is “grade history midterms”. Procrastination priorities are in order, at least…

One of the things I have come to realize is that I have a very limited emotional/mental gas tank. I work really hard to try and keep it full, or at least full-ish. For me, that refilling is a work, it doesn’t just happen. But there are things that put a slow leak to gaping hole kind of kibosh on my tank.

Last week was hospital week. Reports were good. Things are stable. I am grateful.

And yet those days take every bit of mental/emotional energy reserve I have.

I figured Wednesday/Thursday appointments, I’ll be golden to write Friday, heck, I can use my time at the hospital to write!

Silly rabbit, Trix are for kids. There is no concentrating at the hospital when you are holding a TGI Friday’s style beeper thing waiting for your child to come out of sedation. There is CERTAINLY no concentration when the time gets long, and then the hospital CALLS YOU ON YOUR CELL PHONE while your child is in the scanner, because your TGI Friday’s beeper didn’t work. Yikes. There is no concentration when you wait several hours past your appointment time to view the scans with a pediatric neuro-oncologist. I pulled out my school papers, looked at them, and put them back in my bag. I just had nothing left to use to think about that. 8+ hours total driving time over two days…car time left no mental room for metacognition. I just can’t concentrate on anything beyond National Geographic or looking out the window/praying for the WaWa coffee cart people to come.

Hospital stuff is just a keep on going kind of moment. I wish that this many years into it I could be less frozen by these days. I am less psycho about them than I used to be, but they still freeze me solid.  In the days after these hospital visits I had to set up the SAME series of appointments for another kid…more chillin’ in the quagmire…but it’s done.

Now that I understand how my brain works, I can plan for it, at least somewhat—but I can’t seem to find a way around that resource suck of hospital days/appointment making/planning/processing—and tackling things I dread. I made some appointments for myself in the last week—gave myself a gold star…and then went and sorted papers kind of mindlessly while listening to Daily Show clips on YouTube. That kind of task is a mental resource suck, too. I just can’t find a way around it.

I just have to make peace with it, and try to keep moving.

So in Australia it’s Friday already—I should be continuing to write about the Happiness Project, and I will get back to that. One of the valuable lessons of that book is to let yourself BE YOURSELF. It’s ok to be who you are, you will find more happiness in NOT trying to force yourself to be something you are not. Being Kristin means acknowledging that I have to regroup after challenging days.  I can’t just breeze through things. And that’s ok. Even when it doesn’t feel ok—that IS ok.  Being Kristin means I hate making phone calls and I have to bribe myself to do it. That’s ok. Being Kristin means even if we are running low on data, I might need to stream some Sia in the car to remind myself I’m unstoppable. That even on these days where I seem stopped, I really am only “like, totally paused”. ;) 

Just keep movin’ right along. If I miss a day, the internet won’t break.

But now, I really do have to go grade those midterms. Or eat lunch.  Hm….wonder which option will win?

Sorafatastrophe, or the 4th Worst Day Ever

For the month of May, in honor of brain tumor and NF awareness month (so convenient to have them at the same time!), I am trying to tell our family's story of living through both. I hope that by the end folks have a sense what brain tumors and NF can do to a family, why and how we can work for better treatments (and maybe a cure!), and why we should always, always hope.

We've almost made it! thank God, this has been way less fun than I anticipated.

May 28

From Caringbridge (and sorry, these recent ones mostly are. I just have nothing in me to elaborate much further).


Hey, all.

Tumor Battle 2012 has commenced

At 6 a.m. G swallowed her 3 pills and started smiting her tumors. She was pretty upbeat about it once she realized she could swallow all 3 at once. Then she & Dave went out to get First Day of Chemo Bagels.

This led to a cheerful bopping about singing of “first day of chemo bagel…la la la la la …wooo!”

Sigh.

Please pray that the side effects are too yikes. I am going to stay at school after my classes until the end of the day just in case she needs me. This is my plan for the near future. I’m also hoping I can then keep most of my schoolwork to school, and leave home to home.

At least she was really perky when she left today.

There is some relief in starting, I guess.

I didn’t sleep at all, I knew I had to be up by 6, so…I kept waking up and waking up and waking up all night. Then one of the pills dropped on the floor when I was opening the bottle, and the dang thing rolled…the sight of me & Dave crawling around the kitchen floor searching for the tiny investigational drug that was so hard to get and likely is not supposed to be dropped onto a kitchen floor and lost ON THE FIRST DAY! Ack. Dave eventually found it…

Dose 2 will be around 5:30 today…G can’t eat for 2 hours before or 1 hour after, so that might be tricky, but …Game Face is Now On.

Here we go…

Peace,

k

Game Face On...Tumor Battle 2012 Begins
and if this teaching thing doesn't work out,
I am going to start a motivational t-shirt business

And so it was.

We got into the routine of it pretty quickly, this Sorafenib thing. I got pretty good at explaining it to people, this trial drug. We bought G all sorts of soft shoes since Sorafenib can be hard on the hands and feet. Weird, right? G hated the fast after snack in the afternoon, the odd timing of meals AROUND chemo. I felt constantly on edge of “don’t forget!!”

Rosie had a stable scan, we had many epic trips to Philly…and G slogged through. She tolerated the medicine really well,mostly. She was so tired, but generally ok.

Until the President’s Day session at Camp Sunshine.

She just wasn’t herself, she was refusing food, falling asleep randomly (like to the point where she was scaring the other bt moms.)

BT NOTE: If you are freaking out other brain tumor parents with your brain tumor kid, you know you are in Deep, Deep Yikes.

We nearly went to CHOP over it, but then G perked up a bit. But generally she was so tired. Her feet hurt. Her limbs cramped. She was exhausted, and just sad. She would lie in bed and worry in the mornings, instead of getting up to go chat with Grandma next door.

Reading through these entries on Caringbridge hurts my brain so badly.

G is still struggling with fatigue—I have come to understand that weekends are just sleepy times for her, she pretty much lay in a heap all day; the last 2 days her feet have been more sore…I can’t SEE why, I believe that they hurt more, but there’s no new blisters I can see. Her ears are a mess…I didn’t realize how bad they were because of her hair, but eek…they are like peely reptile ears. My poor G. Lotion does seem to help. Sorafenibed again!

That said, we were talking about NF the other night, a little friend from our slide show above just started chemo this week, the same one G started with back in ’04…so the girls had questions, and I apparently have some level of PTSD. Urp. But Rosie wanted to know about NF1 and NF2, which was worse…trying to explain genetic variability to a 9 year old is a bit tricky…finally I got to “some people have NF badly and some have it not so badly”. G piped up, “I don’t have a very bad case.” Rosie jumped right in, “I hardly have it at all!”

Genna has multifocal diffuse inoperable brain tumors, a vp shunt, vision impairment, learning challenges, and she’s on her 4th chemo protocol. Even my sweet Rosie, who has not needed treatment, has 2 tumors in her head.

You can’t really have only a little NF.

While I managed to just kind of smile and nod, I was struck by how that moment reflects who my G is, particularly. She is so mighty. She just takes whatever comes…sometimes with fear, reluctance, and sorrow, but she takes it and keeps on going. She is so mighty…and Rosie wants to be mighty too, and I can see she is growing into that, and I pray she is spared what G has had to endure…

And then it was Holy Thursday, and time to scan…and we left for CHOP so early, and got G in…

And everything, every single hope died that day--not for the first time, but anew.

Thursday, April 5, 2012 8:59 PM CDT

Hi, all.

Today’s final score: tumors 10 billion, sorafenib zero.

G’s scan was a lot worse.

Like, even WE were kind of shocked…

So we regroup, we plan, we start again. And we beg God. We beg for mercy. We beg for what so many other parents have begged for their bt kids.

G said to me today, before we saw the doc, “Mom, I told God whatever He wanted to do was ok, if I have to stay over, or start another chemo, it is what it is”. And I took her hand and told her she was so brave…that I knew she was scared, but she was doing what she had to do, and that meant she was so brave. I told her I was so proud of her.

We have to wait 4 weeks for the Sorafenib to get out of her system…and then we will begin again, if I have my way it will be on the day that marks 4 weeks or just after…the beast has to know that we are not going down without a fight.

G took it pretty well, MUCH better than in December. She was pleased to not have to do chemo at dinnertime anymore, she asked if she could just get a port and get it over with…but no. She knows we will have a plan, likely some cocktail involving avastin.

As we drove to CHOP at 5 am, we marveled at how gigantic the moon was, so big and white…then gradually yellowing, until it slipped beyond the horizon…and I realized that song is right. The darkest hour really IS just before dawn.

All I can do now is pray for dawn.

Thank you all for praying for us. Thanks for all who texted G with jokes, pictures, random chitchat…that makes her smile. And come hell or high water, I need her to smile. She was smiling at the end of the day, our long talk with Dr. B got G some one on one time with the child life specialist, Megan. They were playing cards when I retrieved her. “That was so fun, mom,” she said…

I may or may not go on facebook tonight, to see everyone so sad is like knives in my heart, and my heart is already broken today. But thank you. I also learned I get wickedly carsick if I text in the passenger seat for 2.5 hours. Ergh. And tomorrow I can’t eat, so this should be interesting. Good Friday my fat fanny.

I knew this was coming, but it doesn’t make it any easier.

We were devastated. Our priest referred to the “economy of words” this past Sunday, and on Holy Thursday, 2012, the economy of words simply could not describe our brokenness, our fear, our despair. Sorafenib didn’t just fail. It was a catastrophe. We have never seen that speed of tumor growth, and I hope we never do again. It was horrifying, those scans.  Horrifying doesn't begin to describe it.

Our poor G…

The Little Pills That Wouldn't

The Little Pills that Wouldn’t

“…And the little pills said, “we cannot inhibit the kinases, not even one”, and they rolled to the bottom of the hill.

But the doctor said, “Little pills, the good little boys and girls on the other side of the mountain are waiting for good food to eat and toys to play with and extreme inhibition of their kinases, also some whomping of their vascular endothelial growth factor if you’ve got the time.”

And the little pills looked at the mountain. The little pills thought of those boys and girls waiting for multiple kinases to be inhibited. They thought of the growing blood vessels and the busy pathways. The pills pondered and thought and pondered and thought and finally said,

“Nope. We will dance the Macarena with the kinases and shower them with VEGF. They will be Kinases Gone Wild, and MTV will send us a contract for a show and the boys and girls will be famous for 15 minutes so they won’t care that big picture wild kinases and VEGF out the wazoo could be a serious problem. Booyah!” And they blasted over the mountain like they had little tiny jetpacks built into their smooth, round selves.

And that is the story of Sorafenib, the Little Pills that Wouldn’t”.
****************************************************************

I cannot fathom why I never successfully broke into children’s book writing.

I know I said I wanted to post more…and then all the words got sucked away. Alas.

But from my cave of seclusion I have come to realize a few things. While I am literally scared unprintable-less by the recent turn of events, the need to be calm for my G has become pretty much the defining feature of our days. That said, here are 10 things that are true:

1. I kvetch about the Polyfill invasion, but a giant stuffed animal is instant gratification for a kid who just failed chemo #4. Giant animal with note linking it to a much loved teacher who passed away from a brain tumor years ago…major bonus points. She smiles…Win!

2. I almost don’t need to hide from humanity, if I go out in public I’m in such a fog I inadvertently walk by people without seeing them, truly without even realizing they are there. So if I did that to you and you did NOT call out “Hello!” to get my attention, forgive me…I wasn’t shunning you. I really didn’t see you. I need one of those “Iceberg! Dead Ahead!” guys. Although that didn’t work out super great either, right?

3. But if you come to our door or call my phone…I am hiding. I am sorry. Talking is hard. Typing, less so. Even if you are carrying 2 giant stuffed animals, one for G and one for her Super Sib. Hey, Super Sib is also a Super Door Answerer.

4. Unless of course you are comparing the merits of Dance Moms Miami vs. Dance Moms Pittsburgh. Puhleeze, the guys in Miami can do pirouettes. The Pittsburgh lady screams. End of discussion. And no, I never watched either of those shows. Ever. I am just guessing. Ahem.

5. To my hero kid, there is a silver lining to even the most craptastic of circumstances. Today’s observation, she realized she can wear heels now that her feet won’t be blistering from the Sorafenib. She added a loud “ALLELUIA!” to that statement. We began looking for silver graduation shoes in platypus sizes tonight. Can I get an amen?

6. Also realized maybe we better practice WALKING in said shoes if we actually buy them. Growing multi-focal tumors + visual impairment + the much longed for 3 inch heels may = ER.

7. When I am really stressed, I don’t eat chocolate. Chocolate is for the lower colors on the Homeland Security scale, like green, blue , and yellow. Once we hit orange, like we did last Thursday…even I can’t eat chocolate.

8. Yes, I had to go look that up, I only remembered the orange.

9. Eventually I get past that and make up for lost time. Did you KNOW Amazon sells a 4 pack of Cadbury mini-eggs for only $10?? A bargain!

10. Even though we are utterly, completely devastated right now, like ol’ Rodgers & Hammerstein pointed out, we’ll never walk alone. We are so grateful to everyone pulling for us right now, and we are so sorry this is causing you all such pain. Seriously, even as we’re getting the results, staring at the screen, both Himself and I are trying to figure out How the Heck Do We Break this to Everyone…

Here’s hoping that the next book in our series rots less than “Sorafenib, the Little Pills that Wouldn’t” …

It didn’t even have good illustrations…