Wednesday, December 10, 2014

scanxiety.

sometimes i type things out on brain tumor pages or to friends with brain tumor kids that i only wish my own head could grasp.

my heart does. but my head lags in that department. 

i tell people not to worry about scans because nothing changes the outcomes (i do.)
i tell people to let things go and live day to day all of the time bc life can change at an instance (sometimes i fail at this.)
i tell people to trust their intuition (yet i doubt myself, often.)

i don't know if i do say these things so often to people because it helps my own brain lean towards those ideas by the power of persuasion in a way? i dont know.

the week leading up to an MRI, you see everything.

your child walks worse. they talk worse. they blink too much. they don't blink enough. they stare into space. they sleep too much. they don't sleep enough. they look like they might feel sick and aren't telling you. oh, wait, they just have a cold. they used to know something you asked. your child must be losing their memory. you cry in the car more often than normal. you may throw up throughout the day. some days are awesome. you're grateful. then you're not because maybe you should prepare yourself for bad news. what would i do if they told me bad news? i would keep it together with a game plan. i would throw up for days. i could pick myself up and handle it. i would fall apart. i would do what i need to do - because i would have to. the weight of it all is unbearable at times. catch-your-breath-overwhelmingly unbearable. your chest can feel like it almost collapses with one simple thought.

you go to the MRI and you've hyped yourself up for days. everything seems normal - you see doctors and nurses you know and do the same thing you've done two dozen times. weight, height, go over meds, get a gown, impossibly distract your child from needing to eat or drink. you go and wait. this MRI is definitely taking longer than normal. it's because they found something. obviously. well, wait, i guess its not that much longer...

if you are lucky enough for an appointment after, you'll clean yourself up if you've thrown up breakfast in the hospital bathroom and head to a clinic room to wait with your post-anesthesia tired, crabby kid. maybe put on the tv, play on the ipad, chat like normal. you try to answer 17 texts from sweet and curious friends wondering if you have results yet, but after a couple, you feel exhausted all of a sudden. you might be there with your husband or wife. you might be there alone. but waiting is definitely better than going home right away. or maybe its better to just wait for a call - where you can forget things for a few hours. but it doesn't matter because here you are, waiting.

we keep our door cracked because for some reason, i get so hot in that room. i hear oncologists talk to other patients, but only that one and a half second that they open the door to say "good news!" to kids waiting on their own results. i get reminded that we aren't the only people waiting for results - she isn't the only sick kid around. i tell myself to feel blessed. then i need to throw up again. i shut the door.

eventually reese falls back asleep and i wait again. playing on my phone. pretending i am not where i am.

then you hear a quiet knock and the door handle jiggles. 

that next half of a second, your entire life comes to a head. everything you know could come crashing down with the next sentences that you hear.

if you are lucky enough to hear good news, you feel good. 3 more months til the next MRI. you feel good for a month, maybe 2, then it will start all over again.

that. that is scanxiety.

for some reason, i am dwelling on this one. i felt very confident in september - and i have no reason not to feel the same way on monday. yet, i do. we've taken her port out now. maybe i've felt too confident. it all seems too good to be true.

worry is the thief of joy. i know this. so now i am choosing to forget that 2 years ago, this friday, we were told her tumor was growing, that we'd need another brain surgery. i am going to try not to focus 1 year ago when she was in the hospital with some sort of infection that we spent days trying to figure out with such low temps and heart rate. i am going to spend all of my energy praying that the days leading up to christmas are spent at home making craft ornaments and wrapping presents - and not at the hospital w wishes to make it home in time for santa.

praying that, again, reese's tumor is stable. please pray for the same.

reese and miller cereal1

5 comments:

  1. I'm not a religious person, but I follow your lovely family on Instagram and I send good wishes and positive thoughts across the oceans (from New Zealand :) ) every single day. From a Kiwi Mum to a US Mom, I send my heartfelt best wishes to you, EJ and your lovely girls xx Shay

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  2. Praying for your beautiful family that the next scan goes well and happy to know that you cherish every single day with every one of your tribe. Love from Australia xx

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  3. You will always, always always have prayers from us. Luckily, you have a little warrior rockstar on your hands... so I KNOW you'll get good news. But you can still have prayers from us to boot :)

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  4. That was worth every second I spent reading it. My heart goes out to you and your girls...and all the other parents who must continue to battle this anxiety every 90 days and in between pray for the best.
    with prayers
    ap

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  5. Praying for you to get through the day and to hear good news!

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