Monday, October 28, 2013


Scarlett's next MRI is tomorrow, and I am having the worst case of scanxiety yet.

I lost count of Scarlett's MRI's years ago - 15? 20?  Somewhere around there, at least.  I remember the first one, but after that, they all begin to blur.  However, the sick feeling in the pit of my stomach that comes with it is a clear memory.  It comes with racing thoughts of what will happen next, imagining how we will her the next news, grief and old memories, sadness and fear. 

That's scanxiety.  Every parent of a kid with a brain tumor has it, as we have all learned what cn happen after a bad scan.  Some have learned to manage it, several years down the road.  As scans get further and further apart, we hear it gets easier.  Our doctors told us that they see people begin to relax more when they hit the once-a-year scans.  I can't even imagine waiting that long to know; we've been living scan-to-scan for so long now, I am not sure how to go about it any other way.

The last two months off chemo have been great.  Scarlett feels better - no more puking, much more tolerant of varied foods and regular meals.  She is more interested in food, in playing and in other people.  She is doing well at both of her schools, and is being her normal toddler self at home.  We knew that a scan was due - the last was at the end of July - but we hadn't heard about an exact date.  Chris was going to call Thursday.

That happened to be the same day that we got a call prompting us for the already-scheduled scan.  Not sure how we missed it, or if we ever actually knew the date, but here it is.  The second I heard the voicemail, I got chills.  I felt sick.  I was at a break in a day of training for work, and the rest of the day became a blur.  I went from feeling fine to being panicked.

And now, I am finding things to make me worry more.  Scarlett hasn't been walking without her walker in a few weeks.  Is something interfering with her motor skills?  She has had some major meltdowns.  Is she having headaches?  The small logical part of my brain (whatever is left there) tells me that there is nothing, but the grief-stricken, traumatized, emotional-mom majority of me cannot stop worrying.

We tried to get out and give ourselves a break over the weekend.  We had dinner out, saw a good movie, but on the way home, my thoughts wandered and there I was, in panic-mode.  Chris, who is usually the more level-headed of the two of us, heard my concerns and couldn't stop himself from joining in.  By the time we got home, we were exhausted and felt worse than when we left.

It catches me off guard, still.  I keep expecting to feel prepared, ready for the scan to be clean, like it usually is.  Or it was, until the damn tumor came back.  We started to feel comfortable, like it as going away, until this time last year, when it reared its ugly little head again.  Now, when we feel like we are over-reacting, we only have to tell ourselves that it already came back once, no reason it can't again, and worry floods in.

I think the difference this time is the end of chemo.  It's the first scan after stopping chemo.  As much as I hate those awful drugs, they give me a confidence.  Without the drugs, she's open, exposed.

I hate this part.  I hate the feeling that this will never be over, or that the worst is ahead.  I see families like ours who are years out with clean scans, and feel like they have mostly all figured out a way to move on.  We haven't been able to do that yet, and it is eating at me.  We are still in recovery mode.  Our whole life - our jobs, our finances, our marriage, everything - are still bruised and beaten by this tumor, and are trying to come back.  Every scan holds the chance that we go back to the beginning yet again.

We won't hear real results until Thursday when we visit the clinic.  Scarlett will be going for labs in costume (which I just finished making!) and we have plans for trick-or-treating after.  Until then, I keep trying to breathe, moving forward one step at a time.


SaundersLM2 said...

Having never been in your shoes I truly can't imagine the angst this must be causing you. But I do know that you have a ton of people thinking and praying for your family everyday. I can't wait to see Miss Scarlett in her costume :-)

Allison M said...

One step at a time is all you *can* do. Worry, anxiety, fear, they all show that you're doing your best, and dealing with the most horrible of situations with the tools you have inside of you. I don't have a child with a tumor, but I myself have brain issues and get multiple scans a year, so I can understand the scan to scan mentality. It eats at you and consumes you in a way that no one who has never walked those halls, or sat in those rooms, could ever fathom. You are doing remarkably well and will continue to do so, because there is no other option :) Sending good thoughts and gentle hugs to you, Chris, and Scarlett!

DiJe said...

Lots of good thoughts and well wishes to you.

jennybbay said...

I experience this myself, for my own bt and I just can't imagine going through it for a child, just can't I read what you write, because you are so admirable and I just can't stop following your -- Scarlet's -- story. I'll be thinking of you and hoping for a decent week and a better weekend. As you say though. One step at a time.

child of God said...

I can feel your anxiety through the words that I just read. You express well.

Praying for you and asking God to cover Scarlett and for those scans to be clean.


Colleen said...

Focus on the positive and try to see the new things Scarlett is doing to ease your mind. She sounds like she is doing so well and growing and thriving. Keeping you all in my thoughts and crossing every finger and toe for a clear scan.

debtfree4me said...

I just want to send a virtual ((hug)). Scarlett, Chris and you are in my daily thoughts. Fingers crossed for clear scans.

Julie said...
This comment has been removed by the author.
Julie said...

Big hugs and prayers for the "all good". You guys are so strong and so inspirational!