waiting

 

For me, the waiting has always been the hardest part.

Let's get moving already.

You get that phone call with a diagnosis and they send you directly to the scheduling nurse and who says, "Hi this is Tina, I'll be helping you out today. Sorry about this life-altering disease, I'm thinking we might be able to schedule a telehealth appointment three weeks out."

Three weeks?

Telehealth?

"Listen Tina, I'm 'bout to schedule an appointment in a back alley behind a White Castle with some guy named Kevin - he's pretty sure he can get this done with a rusty knife and a soldering gun by Thursday. Any possibility we can expedite this?"

"Unfortunately no, but what we can do is offer you some information to share with your kids about cancer. We have coloring books, journals and some helpful links."

"No thanks, we're good on that front."

"I know it's a lot to process, but it can be really helpful for your kids to understand radiation, chemo, surgery."

"No thanks, can we just make the appointment?"

"Honey, it's really important for your family to understand . . ."

"Tina . . ."

"I do realize how scary this can be, and I'd advise . . "

But we shall never know what Tina would advise, because she pushed the last button when she said "There are so many things to learn and people just don't know everything this entails."

Oh girl.

I manage to calmly and kindly explain our situation - the sarcoma, the glioblastoma, the grandparents, the godparent, the in-home hospice. We even touch on the annual fundraiser and Kesem, and learning to ride. scooter in the oncology ward. I do this in under 20 seconds because I'm not kidding about expediting this.

She finally schedules me for a phone conference three weeks out.

I want to go to the best place. I want to go to the place that can simultaneously manage the hole in my heart and the cancer, but I've had that hole since birth, this new stuff's gotta go first. So I call my second choice hospital. 

My intake nurse there asks how I'd like to proceed.

Her response immediately tells me I've made the right choice. "Holy shit, I'm gonna see how soon we can get you in." She schedules me to meet the surgeon on Monday. 

So that's where things stand for now. The hole is still there - always has been - I'm hoping the heart holds up while we slice or burn or poison the other stuff away. In the meantime I'm just juggling this heart monitor, choreographing a show, teaching dance, subbing when I can, and feeling physically pretty great. 

Thanks for your sweet notes and love you've sent our way. We are truly the luckiest people in the world to have friends like you.