Check the box

The countdown begins. Surgery number 20. A milestone. You’d think I’d be used to all of this. After battling this illness for the better part of 27 years, you’d think I’d get accustomed to all of the testing, the back and forth, the waiting, the filling out of forms, poking and prodding.

The truth is, you never get used to it. No matter how many times the doctor sits across from you and tells you “this is something we have to do.” In this case, the “something” they have to do is go in and grab a bunch of necrotic tissue.

Great word. “Necrotic”. Jeez. As if this whole process isn’t scary enough, you now have to face the fact that you have dead tissue adhering to your organs. And it’s spreading. Why? Because multiple rounds of chemo and radiation kill the good stuff as well as killing the bad stuff.

When the doctor delivered the news, I nodded my head and responded the way I always do, “Let’s do this.” I left the office, waited for the inevitable schedule wrangling and spent time thinking, this is just one more thing. One more thing in a long line of things that you face when you are battling chronic illness.

Pre-op. One large waiting room. A nurse calls your name, and you step into a tiny office covered with religious tchotchkes. She asks you a bunch of questions, and you fill out a bunch of forms. Mind you; these are the same questions you’ve been asked 3–4 times before this visit. In the same hospital. With the same computer system. The nurse hands you a clipboard, three pieces of paper and…wait for it…a #2 pencil. You now have to fill out the same set of forms, again, with a pencil. More waiting. Ushered into another room for all the pre-op. Then herded, like cattle, with other families, down to radiology. More waiting. As you leave, you wonder, “when is this experience going to improve?” (that’s another blog post)

On your way out, you are handed a folder with a bunch of papers in it. You get home, and you read them. You want to be an informed patient. And yet, this feels cold. Sterile. Void of feeling. On the last sheet is the check box. The question about whether or not you have an advanced directive. Yes, that box. Check.

33. That’s my number. This advanced directive is the thirty-third. I stared at the form, read it again (although I think I know it by heart) and checked all the boxes. No. No. No. No. No. No. No. No. The same way I checked the previous thirty-two.

I made the decision long ago, no extraordinary measures. Don’t plug me in. No tubes. Don’t shock me. No treatment. No. Nada. No way. Donate the good stuff and the rest goes to science. If I can help with early detection, save some lives, advance genetic testing for another girl who may be pre-disposed to this cancer, then that’s how it should be.

Now you know.

And yet, the whole process is still unnerving. It never gets easier.

#cancer #itsalwayssomething