Friday, September 30, 2016

I wish Planet Cancer still existed.

Now more than ever, I need that community to get me through this new phase of my life. The message boards and personal pages were a wealth of information for kids going through the dying process and it's commiseration I sorely need right now. I met my first friends with Ewing's on PC.

Then it was sold to LiveStrong (evil), totally dismantled into a content/ad-making machine and everyone left.

Tuesday, September 20, 2016

I'm dying.

It's happening faster than I thought-- a landslide that started with a few small pebbles and now gravity has hastened the destruction.

I'm in extreme pain all over my body. I have bone tumors in my hip, femur, up my spine, and most likely my arm.

There's no hope for treatment, only managing pain and trying to prolong function. I'm currently on fentanyl and dilaudid.

I had a phenomenal summer traveling all over Europe-- somehow, over the course of two months, I managed to suppress the cancer and pain-- I walked everywhere and did everything-- discovered new places, friends, and art. I started in Paris, wandering around, meeting new friends and discovering museums. Then took the train to Florence, Rome, Praiano, and Naples. I saw Herculaneum and Pompeii (again!). I climbed mountain stairs on the Amalfi coast to secluded beaches and rode scooters to nearby towns. I discovered Naples, my new love, and wandered the strange and superstitious alleyways for days on end. I met a friend in Paris who invited me to St Tropez, an invitation I readily accepted. After Cote D' Azur sunbathing and amazing home-cooked meals, I travelled to Berlin to stay with a beloved friend for a few weeks, before attending the wedding of another friend, in which I read a passage to her and danced all night (something I haven't done in years).

It was a magical summer.

The pain started immediately after I got home a few weeks ago.

Over the last 8 years I've watched all of my friends die from this horrible disease, and it appears to be my turn. I can't stop the landslide. Everyone handled their death in their own way. And so will I.

I'm currently starting palliative radiation for the hip & considering the move back to CA for my last months. It will be so hard giving up my dreams, finally, to this Monster. And yet, I feel incredibly lucky to have survived 8 years past my first diagnosis-- I hope I've inspired some of you to make it even longer. I've made little pieces of my dreams come true in the past 8 years, and that's more than some get. I feel blessed.

The pain is severe & I feel like recoiling but I will try to blog more in the coming weeks/months. I know you are curious, I know you want more of my story. What can I do but give that to you? My goal is to make it to New Year's-- let's hope.

More to come. I promise.