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."
Wednesday, August 10, 2011
Even in shock, amongst all the brain chaos, there's always a soft, delicate, calm voice in the background, thinking of facts, hatching a plan. I start planning before the test considering options. I always have. I met with Dr. G the next day. It was a family treatment meeting. My parents went with me. G started off with telling us I no longer have any single agent or one type of chemo treatment available. I've used the proven safe ones. I can only move on to a harsher treatment that's given in-patient over days causing SYMPTOMS like easy infections and baldness. Bad news out first. I okayed that then mentioned I'd like to see. DRUMROLL PLEASE Dr. Owen O'Connor @ NYU!! If you're not familiar, Doc O has been recommended to me many times over the years. I didn't think it was time then. I wanted to stay close to family. Now is time. Dr. O does a lot of research on resistant hodgkins patients specifically. General at this point most trials are testing for all lymphomas and both hodgkin's, but he may have something specific for my disease type even. He's hope. One other hodger I met through the blogosphere or talkosphere also had refractory hodgkins so aggressive it was growing out of the skin on her chest and her area doctors had told her to go home, lay down, and enjoy her last 6 weeks. She said no thank you. She wanted to see her son grow up too. One of Doc O's trials put her in remission for a year and a half!!! She only had to go to nyu once every 3 wks! Say excited prayers. This could hapen. And all this was decided and put into place amidst the chaos of enjoying time with fam, phone calls, organizing. I'm in NY now. Still anadventurer