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."
Monday, August 31, 2009
Easy peasy nice and easy is one of x and my favorite sayings. He really gets into the rhyming thing. That's how today has gone, easy peasy. . Luck is on my side today. Every appointment is flowing nicely one to the next. I do have to give dhmc credit, they can coordinate. I love it. This is a big compliment in healthcare world. I saw g at 10am only to be sent for a chest xray. I've been having shortness of breath and pain with breathing. These symptoms buy an xray, but I think it's my normal seasonal reaction. I do this every year. There was no pneumonia seen on my xray. Thank goodness. Just as I was getting the results Marie's intake nurse snagged me and brought me to her office. Marie is one of my new favorite providers, obviously, she is in palliative care and writes the scripts for my pain control. She is now the guru in charge of helping me maintain my quality of life whether it be through pain control, managing finances or family matters. I am breathing a big sigh of relief having her. Every patient needs a person aware of the entire picture on their health team. Due to boundary issues, that person can not really be an attending. I'll have to snap another picture of G for the masses though, if he let's me. He's a cutie. I'm sure most of his patients wouldn't mind having him up in their lives. That can't happen. A person's body is so multi-faceted even when healthy a disease like cancer throws a huge wrench in the basic maintenance of homeostasis. A doctor needs to focus on the physical domain. This is not to say that clear, effective methods of communication aren't needed. I did ask for a nice streamlined way to communicate with either him or his NP. His idea: wait until appointment times. . My response: no. I have symptoms act up every other day. I need to get ahold of someone. . I got nowhere with this. I think I'm going to become great friends with dianne, the receptionist even though I do feel like a stalker saying "I don't care where they are, I really need this symptom cared for now. I will admit, I did get pouty feeling concerned I may again not have my needs met and suffer unnecessarily. I guess we'll see in time. So I have marie whose sole job is to keep me living the life I want to live. Yayayaya. Then after marie, I was off to infusion for my chemo where I have been set up nicely in my cozy recliner with a turkey sandwich and salad. I'm off and things are running smoothly for the well oiled machine that is me. Let's hope the rest of the week goes as well