This was the quote a super mom left off with from the NBC nightly news. Her son is undergoing standard treatment for refractory lymphoma, aka a stem cell transplant. Her daughter, who had to accept traditional care for a separate cancer has recovered, but they are in financial distress now labeled insuranceless, as a self pay, which believe it or not is more expensive than having insurance. No group protection. Mom is trying to raffle off her sick 3 year old's paintings on facebook for cash. Sound familiar? And I'm the one finally feeling bitter. I'm entitled. It's been a long fight, and still, mom's have to raffle their kid's energy for treatment. Even "dying" I must have a job for piece of mind. Also on the news were state plans for universal health care and exchanges. It said NH has not done anything, but VT has created a single payer system. Don't believe everything you hear. I know NH has a catastrophic illness exchange created. I know they have innovative ideas to make care delivery safer. Its one of the things I'm proudest of, and of course, it's being threatened. I need to write that piece but I've been distracted with duties. I think its time to do some hard core complaining first. I'm feeling bitter, not better. Who knew a stomach virus could cause adrenal insufficiency when I felt my best? Who knew I'd re-ocur, the insurance would deny the awful chemo to make me better at $10000 a daily pill? Who knew my graft vs host would flare up in early dec., IN THE BOWEL rendering me useless, sleeping constantly, unable to eat or drink? Who knew itd be the first time I really suspected I could die, that itd be so painful I'd beg for relief, and worse, after over half a decade of fighting, I wouldn't be able to get ahold of my primary NP or doc for guidance? To top it off, who knew I'd consult my expert teams only to have home team blow it off for the easy answer. I've fought off worse. I won't let this be my downfall. But I've become so weak. I can only eat a few very healthy things or surrender myself to wrenching in the bathroom.
Sent from my Verizon Wireless BlackBerry
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."