Friday, May 30, 2014

PTS and Childhood Cancer

**Note: I wanted to add that because these 2 things aren't researched or TALKED About much, even to us, the stages of trauma with any chronic illness is probably different along the way. I'm only writing from our perspective now.

First off, I just want to say that if you've never gone through cancer treatment (or another chronic illness) with your child AND have never had a true anxiety attack, you just can't know how they both impact daily life. 

I've been through traumatic stuff in my life before and I've struggled with a little anxiety off and on. 

I've learned how to cope with it and found what works best for me: 

*working out
*surrounding myself with positive, uplifting people
*scheduling time alone
*careful planning of my day
*not a lot of noise and crowds

When we first started on this journey I began doing my own research about links between Post Traumatic Stress and Childhood Cancer. There's not a lot out there, but everything I found revealed that it is real. 

I've blogged before (here and here) about anxiety and how we are seeing it present itself more and more in our lives so many days after the initial panic-cancer-is-here-why-did-this-happen phase. 

However, nothing



prepared me for what I experienced earlier this week. 

I've noted before that after long periods away from the clinic we've seen anxieties in both Jace and the girls. We've also felt them ourselves. 

We knew that Wednesday was going to be long and we'd have to get into our "zone" to get through it. 

About a day before treatment, there is always a mist of anxiety blanketed over all of us. 

The thing is everyone (almost everyone) thinks all is pretty much back to normal or at least routine now that we only go in once a month. 

Maddie has said her friends struggle with understanding why it's all still even a deal at all. 

Avery usually wears her heart on her sleeve so anyone around her knows this topic makes her sensitivity heightened. 

Jace seems to cry more easily about small things. He is more clingy. His appetite is almost zero ( some par for the course). 

Jason and I usually cope in our own ways. Extra workouts, extra prayers.....

Yesterday started off normal enough. Nothing big happened. Looking back and reflecting, I know I didn't make enough time to read my daily devotional, didn't play Air1 while getting ready, didn't arm myself like I typically do. These are small intentional things I do, and now I know they really DO help! 

I got to my meeting and tried to balance myself. (note: Didn't stop at my office to breathe, check email, or acclimate myself like normal.) 

I started reading email and realized sweet Avery was getting an award and because it was Wednesday we wouldn't be able to see that. 

This Wednesday meant a lumbar puncture, ivig infusion, benadryl, tylenol, and a pentam breathing treatment. 

That triggered how much I hate cancer and chemo and how many moments it has tried to steal in 485 days. 

Then, the words "Maybe one of you can go with Jace and the other can stay here with Avery." (no. just no. both of us like being there when we can because we know it will be a long day and the toll on us will be less if we are together)

All of that happened in a 2 minute time span as my heart was racing, I couldn't breathe, I started sweating, and feeling like I was going to pass out. 

I needed to run! 

I gathered my things and barely made it back to my office before I just lost it. 

There was no warning. No insight that there would even be a trigger.

You can't plan that. I can pray and pray for those attacks to be alleviated or completely gone, but in that moment all I could do was breathe and escape. 

Everyone is full of advice about anxiety, but it's not as easy as being grateful, relaxing,  breathing or praying. You KNOW I'm already doing all of that. Anyone who has experienced a true attack, then you know if it were that easy you'd not be having them. 

Here's the article I posted (thanks, Candi!) on the last blog about PTS and #childhoodcancer: (

Be aware that those you know fighting an already difficult battle are also dealing with this. Are they dealing with ALL of that? Probably not. But PTS is REAL. 

*Note: This video is only to show the daily struggles of simple things we took for granted before. Taking off his band aids can sometimes take at least 30 minutes because he doesn't want us to touch them and he doesn't like the sound they make coming off. 

We've noticed changes in Jace's fears and his need for a sense of constant security and consistency. Any small change triggers immediate fear and anxiety for him and I've learned how to read his cues. 

For me, here are some things that have changed: 

I find that I want to avoid crowds more than before. 
I find more comfort in one-on-one situations instead. 
I would rather stay home than go out. 
Trusting people is harder than before. 

All of that is not gonna help me grow and I KNOW this. I'm growing through it and super in-tune with what helps. 

After sharing about my anxiety attack on FB, my sweet friend, 

Sherry said "It's refreshing to know you're human." 

I am HUMAN. You just don't know how human I am. 

*Pull up a chair and pour some coffee*

I'll keep sharing my journey with all of it's struggles, victories, laughter and tears because I know someone else out there needs to hear they are not alone and it's ok to be vulnerable. 

I'll keep doing the thing I know works for me: praying and writing. 

I should be doing all of that anyway. :) 

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