DEH: Anybody Have a Map?

Last minute, unplanned road trips are fun… unless you want to know where you’re going and how you’ll get there.

GPS is a wonderful invention. As long as you know your destination, it tells you how many miles you need to travel, your current speed, places to stop along the way and your arrival time. It also shows you a map of your journey. Point A to Point B. Clear. Accurate. Reassuring.

I love my GPS. I’m a Wazer.

I also love driving the road less traveled, finding a new way each time I go somewhere. It’s fun. Adventurous. Relaxing. Plus, Waze is always there for me, ready and waiting should I find myself in need. Reassuring.

Life is supposed to be an adventure, right? Planned with enough spontaneity to keep it interesting.

That was me circa 2004.

That’s when I found out that “normal” questions might not have an answer. Questions like:

* what stage is your cancer? (Where are you going?)

* what’s your prognosis? (How long is your journey?)

* how are they going to treat that? (How will you get there?)

The list goes on… I used to ask those questions. They are logical. Inquiring minds want to know. Some minds need to know. The “why” and the “how” of situations. When I was on the receiving end of these questions I was, again, that cartoon character who just sat there with eyes 👀 blinking while sound effects enunciated the blinking. There wasn’t an answer yet…

ANYBODY HAVE A MAP?!?!?!?!!!!!!

A diagnosis of APL in today’s world is still quite scary. It has a standard protocol. It’s scary. It’s deadly. There is a map.

In 2004, where I was living, there was no map. No protocol. There was a drug trial at MD Anderson. Thankfully I became part of a small group in a specific trial. There was 30 of us and we would each follow a different treatment plan. We would work it out as we went along. No map. There was a destination and an alternate destination. Our preferred destination was survival. Our alternative destination was to gain information that would benefit those who would be diagnosed with APL in the future.

I preferred the first destination.

I was thankful that the alternative destination was on the route.

I was flying blind.

I was making it up as I go.

It was a scary truth.

It was worth it.