Friday, May 3, 2013
Carcinoid Cancer Diagnosis Anniversary
April 27th was the 4-year anniversary of my Carcinoid Cancer diagnosis. If cancer can be described as a roller coaster ride, then these past couple years have had some crazy loop-to-loops, upside down turns, and gut-wrenching drops. There really isn't a lot that is stable anymore; it's just learning to breath during the times when the roller coaster slows down or is climbing.
This past summer I lost over 20 lbs in 6 weeks - and was down to 104 lbs (I'm 5'5). I couldn't walk; I was having palsy episodes; I was in excruciating pain all the time... my two best friends, Rob and Mike, took me into their home, and instead of enjoying their summer - they applied cold packs, created complicated pain medicine schedules, carried me to the car for ER trips, picked up my prescriptions in the middle of the night, and took turns staying by my side 24-hrs a day.
None of my doctors could explain why my body was shutting down.. the blood tests were almost indecipherable - anemia with high iron, blood counts and sizes in direct conflict with each other... my doctors ruled out all the immunity issues: Lupus, HIV, etc - finally, elevated 5-HIAA "increased their reasonable suspicion" that it was probably the cancer or after-effects of the cancer. Just as inexplicably as it came on, the process started reversing itself in November.
That's the thing about the neuroendocrine system - it affects EVERYTHING... and even when the doctors tell you it's not the cancer; if there really is no other explanation then you got to trust your gut. I'm back up to 118 lbs and eating again. My palsy is at a minimum and the pain is managed well without narcotics. So I'm in that breathing space right now... but weird symptoms and pain remind me that I'm still strapped into that roller coaster seat... locked in.
I'm grateful for all of the love, strength, prayers, and support that my friends, family, colleagues and the Carcinoid community have given me. I know this - even if I'm stuck on this roller coaster for a while longer, I've got amazing people in my life who have opted to take that ride with me, and others who are on the ground - waiving... cheering me on.