Location, Location, Location...

To say that that the last eighteen months have been challenging are about as deep an understatement as I could possibly make. There are many of you who are aware of my personal and medical struggles, nothing hit them home quite as sharply as taking notice of where I was on the occasion of my ex-husband and I respectively signing our separation agreement. Yes friends, as of this afternoon that particular struggle is at long last put to rest.  As one astute observer put it, this experience was like having my arm cut off and then being asked to be thankful for being given back a finger.

On Friday afternoon as my ex signed off, I was having my legs permanently tattooed in preparation for high dose radiation treatment at the Juravinski Cancer Centre, in hopes that this experiment offers a smidgen of pain relief. Treatment I must defer because I don’t yet have a place in which I can properly recover from side effects, nor should I be traipsing around during treatment looking for an apartment. And note I said legs in plural – the bone tumours, as I had suspected, have spread to my left leg (and to other bones as well, they’ve gotten away with having a party in my body without my permission!) And not just spread, the little beast arrived and outgrew the tumour on the right leg in one short year. No wonder I walk as if I have lead sewn into the hems of my pants!

Today it was my turn to sign the paperwork. My lawyer came to meet me; and where was I? Again at the hospital of course! Waiting to discuss how the results from a barrage of tests (with more to come) affect my prognosis and what my quality of life might look like during the time that's left. Signing the paperwork in a room in which I've received a great deal of bad news over the last few years.

I can’t help but remember a video I'd found on YouTube when I was first diagnosed with ECD. A doctor specializing in hystiocytic disease said, of all the nasty diseases under this umbrella – “this is not a particularly good disease to have”. Ain't that the truth. Especially when you face it on your own.