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."
Friday, June 19, 2009
First Day Away
This is my first official posting for my stay-away vacation in DC. Like my last mini-vacation for grace's graduation, I am rat-a-tat-tatting on my blackberry from the privacy of the bathroom. I have become quite the hotel bathroom connaisseur with all this hiding and writing. I do have to say the marriot in portland's bathroom is superior to the hyatt regency's in DC for my relaxing and writing needs. They had a granite seat in the shower I can curl up in, though I am certainly not complaining about the space provided here. The bathroom was the first thing alexis checked out when we got into the hotel at midnight last night after cruising for eleven hours in torrential downpouring rain. The granite flooring, clean lined glass shelving, large mirror and contemporary lighting went straight to her little unspoiled heart. I was too groggy from my slumber in the car and too busy dealing with xander's moaning and groaning that I refused to snuggle with him in the back of the van to truly appreciate the awe inspired look on her face when we entered, but she was definately taking in the scenery. Today our big plan includes The Smithsonian Air and Space and Natural History museums. Thank you "night at the museum" for giving the kids a preview of what they'll see. They were jumping out of their seats screaming for "Rexie" in the car last night. McDonalds is also helping out since their meal toys are night at the museum themed.X has a rex and both kids got einstein bobble heads on the trip last night. That was a good segway into a little educational session about how we can tie in lexi's school learning into our real life adventures. I guess her social studies class was reviwing DC when she left. She's putting together a scrap book with journal entries to present when she gets back. In my cleaning/organization frenzy I found all the pieces to our historic digital camera. I put it together yesterday and xander now has his own equipment. He is quite the photog. I love to see the perspective from that age and size. I have been in touch with Sen. Judd Gregg's office (R-NH) to get a formal tour of the capital building and his office. He appointed my mother to the Board of Hygiene when I was a child, and I wanted my kids to share a similar experience, but the good senator is out of town. We will be able to meet with his policy director, ask some questions, and hopefully get some kodak moments. I, personally, would like a pic from behind his desk so I can pretend I was , at one point, an interim politician. If you haven't been reading the news, your head has been stuck in the sand, or you have been in an isolation room (I'm talking to you transplanters on that one) you might not have heard, but health care reform is on the table in a big way for policy reform this summer. An article in the Baltimore sun by Susan Reimer states, "we are beginning what they are calling a 'historic summerlong debate' on healthcare..... All the players- hospitals, doctors, insurance companies, drug companies- are at the table because, as on wag said, "they don't want to be on the menu." Unfortunately it sounds like some key players have been sidelined, and those people are the patients. Maybe it's due to our lack of a major organization looking out for our "special interests," which are, in my opinion life, liberty and the pursuit of happiness. I guess if none of these other healthcare "players" at the roundtable will be on the menu, someone has to be. I don't want it to be me. Do we have any volunteers for this position? I think that number would about equal those of us who volunteered to be patients. An affordable accessible system where costs and profits are not the grand ruler but patient care is primary would certainly help towards the goal of life, liberty, and pursuit of happiness for the sick. Really, individually, I would just like not to have to decide between receiving healthcare and losing my house. I would like to not have the fear that I am going to lose the little income I have and starve because the insurance companies have set up so many paperwork and evidence traps for me to fall into so I will stop ruining their profit margin that I can not focus on healing. I can not tell you how badly I would like to be officially involved in these discussions using my professional perspectives as a patient, provider, and small business owner. For today though, hopefully, I will at least have the opportunity to pretend.