A.K.A “The Best Bad News There Is”

In the absence of a condition or disease to google or seek out support groups, I’m left with… nothing. Nothing to google, no parents or former patients to talk to. Nothing. So eventually I began to look for the emotions themselves. What does it feel like to experience a deep void? What does it feel like to be in limbo? What does it feel like to care for a sick kid? What does it feel like to lose a child? What does it feel like to be a primary caregiver of someone with a serious illness? If I can’t seek comfort from people who’ve been exactly where I am, maybe I can seek comfort from people who’ve experienced the same emotions that I am experiencing, regardless of their actual circumstances.

It doesn’t take all that long to find those people, if you start looking around. Exactly how I started looking, I can’t say. I’m not actually sure that I did. I think I just let down some of my guard. I think I began writing and talking in a way that allowed others who have experienced those types of emotions to come to me. And they did. People who’s children died as children. People who’s spouse committed suicide. People who experienced miscarriage and due to a variety of circumstances came to the realization that they will not become parents of living children. People who grew up with siblings with serious and chronic illness – the unsung “CHOP siblings.”

I intended to write an essay about that topic – those emotions and how they play out in our lives. My life. And I started to. It’s about half written. And I might finish it at some point. But then this happened…

March 16, 2016

 

 

Biopsy Day! I’ve been waiting for this day for months! We’re finally going to go in and try to grab one of the nodules. It was our first planned CHOP admission after 13 ER admits. Last night I spent two hours packing the same stuff into the same bags that I usually throw together in 10 minutes before our drives to the ER at the last minute. I couldn’t decide if it felt like Christmas Morning (it’s here! It’s finally here!) or how it might feel the night before a family member goes to prison.

 

This surgery carries some risks. The surgeon has to cut through bone and then she had to cut something off his spinal cord. Not trivial stuff. She said that one of the biggest risks is that she won’t be able to find anything. That we’ll cut him open, beat him up some more, and do all of this and get no new information. But we have to do something.

8:30 AM

I’m in the surgery waiting room. I’ve written before that this is a place in the hospital that I actually like. There are lots of emotions in this room. Here’s what’s happening right now:

• A father is entertaining two young kids with iPads, puzzles, juice drinks, and games. Their sister is having some sort of routine procedure. They’ll be going home soon. The father told them that they can sleep on the car ride home. The kids set up a travel doll house and began making up stories.
• A surgeon just told a couple, who came in at the same time as us (I recognize the stroller, and the kid’s first name from the pre-op waiting room) that the surgery went well with “no surprises”. He gave them some details that I couldn’t quite hear, told them that they can call his office day or night and talk to a person if they have any questions, and when to schedule a follow up appointment. They looked relieved. After the doctor left, both parents took to their phones and began texting or emailing or blogging or Facebooking or something, I have no way of knowing exactly what they were doing. But clearly they were communicating the information about their kid’s surgery to other people.
• There’s a couple standing by the coffee machine hugging each other through tears in total silence. They aren’t making a single sound but they’re clearly crying. There are places in the hospital that you can go if you want to be alone (I know, I’ve found them) and there are signs on the walls in this room letting parents know to tell the front desk staff if they want or need more privacy. But that couple doesn’t seem want more privacy. I think they actually have privacy in the sense that I don’t think they even notice or care that there are other people in the room.

3:30 PM

The neurosurgeon found a tumor this morning. A tumor is thing.

As she was telling me about it, I went blank. I stared at her, memorizing her face, how she penned her eye liner, the shape of her nose, telling myself to focus on the words she was saying because those words are important. I will want to know this information.  It wasn’t because I was devastated by the proclamation of a tumor. It was because I was relieved.

A tumor is a thing.

A tumor exists in space. It’s a tangible thing. It can be touched. It can be examined. It can be biopsied. It can be removed. It’s unlike emotions in that sense.

Well, except that this one really can’t be removed. It’s entangled and glued into the nerve roots in a way that the surgeon said she hasn’t seen before. But no matter, she cut out as much as she could and it’s likely that pathology will be able to give us a diagnosis within the next few days. And she was confident that there was no permanent damage to the nerve roots.

There was tangible relief as I talked to a succession of people. Elated relief. Celebratory relief. Several members of “The Team” came by throughout the afternoon and evening, some clearly on their way home (backpacks and jackets on) but they’d heard the news during the day and wanted to check in, others because I texted them and asked them to come. “The best bad news there is” his current primary doctor in neuro-oncology said. “A tumor is a thing” another neurologist said, while warning me not to get my hopes up TOO much but acknowledging that we should allow ourselves to feel encouraged and hopeful by this.

Throughout the day I’ve been seeing people here who recognize me and me them and we say hello, sometimes by name, and we chat for a few moments. Doctors, nurses, housekeeping staff, Shawn’s hospital teacher, the woman from registration, cafeteria employees, you name it. CHOP used to seem so big. Now it seems so intimate.

I’m not so naive as to believe that if we’re right about this, that the relief won’t quickly turn into a new type of stress and problems. This will still get worse before it gets better, no matter what the outcome of today’s procedure turns out to be. The pathologists will provide the actual diagnosis, and it’s not a done deal, but there’s a better than average chance that we will have a diagnosis and a treatment plan within the week. And those are also things.