Has anyone been diagnosed with Sacral CHORDoma?

I was diagnosed eleven months ago with sacral CHORDoma, a rare sarcoma which is slow~growing, radio~resistant and with very few experts in the United States. I am experiencing a whole host of overwhelming difficulties from insurance coverage with medicaid (no experts yet in Michigan), pain and symptom management, nearly any treatment plan, let alone navigating the entirety of the medical system and having the knowledge of knowing that folks who know about this disease are as rare as the tumor itself. I am also seeking out peer support with anyone and ev'ry one who is known to have Sacral Chordoma and individuals who have a friend and/or beloved one afflicted with this aggressive, invasive and malignant nuisance.

Somehow, we must keep smiling with our spirit while we keep a song in our heart.

Breathe in Life,
Breathe out Love.