Hold the Casserole, Not the Hope

 When Matt’s stent surgery failed and perforated he prepared for another major surgery. The second in that day. This one more serious. Deemed life saving. They asked if he had a will. We’re in our thirties. No he has no will. I was handed a blank piece of computer paper, and a pencil. A plain number two pencil like one I had used for my civil service exams. Not a mechanical one, just wooden. With a piss poor dirty eraser and some chips of yellow paint missing. 

I had called my parents, I had asked for clean maternity leggings and my Gryffindor sweatshirt Matt had bought me on our fifth wedding anniversary in Universal. It’s easy to pee your pants when your pregnant. Especially, nine months pregnant. I didn’t look as pregnant as people expect apparently. I don’t even know what that means. 

I laid outside the operating room. And everyone starts texting. “I hope it goes well.” 

“I hope he’s okay.”

“I hope you’re hanging in there.”

… and you start wondering about all the things you’ve hoped for in the past. It’s defined as: a feeling of expectation and desire for a certain thing to happen. 

Hope is important, but I suggest you also start to do your homework if you’re ever in this situation. Never be ashamed to Google. Read, self-educate. Don’t expect anyone to just hand you the answers. Everything is vague in the realm of cancer. There is no definite, and I found myself chasing the doctors. I would call their offices and leave countless messages. I would Google the terms of see on the charts in Matt’s room, research the notes in his patient portal. Pry details from the nursing staff, who were sometimes reluctant to overstep or go above the doctors by giving out too much information. But, truth be told they know more than ANYONE. 

I was also networking for the best care. The best odds. The best chance. I asked my OBGYNs who they recommended for oncologists, what hospitals were the best for what we were facing. If they knew anyone. If they could help me navigate the medical terminology that I still was unsure of. They were fantastic. Once I got started I couldn’t be stopped.

That my friends is what you have to do. No one is going to advocate for you. You have to make the calls, chase the answers. And if you don’t like what you find, keep looking. 

I spent my late nights reading medical journals and other blog posts. Self- education while sipping a glass of wine, or feeding our newborn her bottle. The secret is don’t stop.