Nerves

Since Laila’s diagnosis we have been living with a constant underlying anxiety. An anxiety that is extremely heightened by the heartbreaking situation that is happening in our country right now.

On that note, I feel super guilty about even writing and posting blogs about Laila considering what is happening and the feeling that I’m not doing enough to support the movement.

My nerves are shot.

But, the end of the day, we are also fighting a very real battle, and despite her brave smile, it’s scary as hell to watch Laila go through all of this.

We are constantly on edge, monitoring her for changes in her mood, belly, poop, skin color, etc. If anything looks “off” or seems “off” the worry floods in.

Last Thursday night before bed, I went to change her diaper, took off her jammies and gasped.

The photo below was taken last night, but this is what it looked like.

Alarming.

It was “after hours” at the hospital so we called the hospital, spoke to the oncologist on call, sent her the photos and waited. She had never met Laila, and she was also a bit alarmed by the size of her belly in the picture. However, she said it was likely gas and to monitor it overnight.

The next morning we followed up with Laila’s assigned oncology team and their response when they saw the photos was “bring her in immediately, not to scare you but we went to make sure her tumor didn’t rupture.”

Oh for fucks sake.

Within minutes we mobilized and off to the hospital we went.

They inspected her belly, drew blood and we impatiently waited for the results to come back.

After a little over an hour the results were in and everything looked “normal,” so they sent us home.

Because her tumor takes up the majority of her tiny abdomen there isn’t room for much else in there and told us that they they believe gas was in fact the culprit.

Phew.

Spending last Friday at the hospital was not fun, but it was and is always better to be safe than sorry.

When Laila was first diagnosed, our best friend, who is a doctor told me “this is the beginning of a marathon. You have to be prepared for anything. A lot of visits to the hospital, weird rashes, weird changes. Just be prepared.”

And boy, he was right.

So, this perpetual state of anxiety is the new normal. And when you couple that with the anxiety of what is happening in our country right now, and feeling like I’m not doing enough to support a cause that I strongly believe in, it’s really not a good place to be. It’s really all too much.

2020 is a dumpster fire.