No birds are chirping louder. The clouds don’t look puffier. 

No sunshine and rainbows are radiating out of the sky.

But I keep looking.

Many have asked “so what was it like?! You got NED. All that wishing, praying, perseverance, months of torture, negative scans, etc. You did it! You’ve dreamt of this day?! What was it like?”

Well…it went like this.

I am sitting in the room of waiting with Jacob doing school and Steve is doing his usual job of stalking of the radiation office attempting to get the scans first so we can download them in our database, when the sainted Dr. Kushner walks up to me and says.

Kushner: “They look good. Negative.”

Me: “Huh? Negative?”

Kushner: “Negative.”

Me: “Like NED?!”

Kushner: “Three is No Evidence of Active Disease. I’ll come and find you both in a bit.”

And there I was in the room of waiting. There was nobody to hug. There was no music cued as I imagined. No flash mob to be found.  There was even no jumping up and down with happiness as I was surrounded by all the sick children and their parents. I just sat there. I didn’t call Steve. I just went back to the book Jacob was reading next to me. 

Steve comes up 5 minutes later. I tell him what just happened. 

There was no crying. There was no kissing. Rainbows didn’t appear. Not even a single leprechaun to be seen.

We are called in right after. It’s straight to business. We are walked through the next steps. We are told that he will need 5 months of immunotherapy, some new meds and that we need to start shots immediately today (so hang out for another 2 hours at hospital). We walk through radiation protocol (honestly something I fear more than chemo). Steve jumps on work calls. I call my parents and inlaws. I write to you all.

Nothing feels different as we sit in the room of waiting. Waiting for Jacob’s injection meds to be brought up. 

Steve even gives a Jacob’s shot while on a conference call (can’t see but other ear has an earbud in). I get home and pass out for a good hour. There are no bottles flowing at Marquee. Everything around me feels the same.

It was weird. My whole life just changed, but yet it felt no different. 

I tell Benno the news. He says “cool” while returning to his show. I go through my emails and texts full of all of you ecstatic about the news. 

I feel out of body like the physical world is behind the emotional world. How is everything the same?!

I go to bed early so I can be ready for radiation simulation tomorrow.

And I realize that I’m stuck on NEaD. I’m stuck that the doctors keep referring to Jacob as NEAD. No Evidence of ACTIVE Disease. 

NEAD. Phonetically we know this sounds like “need” and that feels like an appropriate name. This NEAD is to stay NED.  This never-ending NEAD. They are clear to remind us with that “A” that the war is not over. That a battle has been won. A big one, but there is currently not a cure.

So how am I? I’m processing. It’s been strange. And maybe it’s because of this virus that is adding to the drama, but I want to tell a tale of unicorns and glitter, but I only got the truth and its a weird experience I tell you.

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1 Comment

  1. I’m sure it’s surreal. how can it not feel a little emotionally dangerous to celebrate but GO FOR IT! it’s good news, not bad news so how wonderful is that? Smile, DANCE and face time you want a buddy. LOVE YOU

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