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, June 7, 2010
I haven't been able to get out of my own way this week.
Respiratory illnesses makes me crazy.
Sometimes I do both at the same time.
I feel light headed and drugged.
I can organize NOTHING, sometimes not even a coherent sentence.
I can't even get around myself to call for help with little, inane tasks like picking up milk or making me a meal.
All I can do is crawl on the couch and sleep.
Since I know this, I prepare before lying on the couch.
I surround myself with everything I need: snacks, drinks, remotes, phones, reading material, etc.
Of course, because there is never a sitation that can't be made worse, this is always when my blackberry decides to act up and shut off the radio or require a password.
If there was ever a debate, oxygen is certainly necessary for life.
Because of this brain block, my house has been chaos.
We ran out of staple groceries, like bread and deli turkey.
Dishes have been piling up so much I'm ready just to throw the next load out.
Laundry has been a never ending parade of baskets that I haven't been able to tackle.
Good thing J picks up the slack.
It's hard folding his clothes with little energy and little oxygen.
He's so big folding his pants are like folding a tent.
Then, what do I do instead of catching up?
I decide to throw a sleep over with Lexi and Carter.
I missed my niece and nephew. It was so much more important that we all got together than my super clean house.
Don't want to miss out on life.
This week is one for the books.
I'm going to DHMC today to speak with J's doctor about treatment for his Crohn's disease.
Luckily, there are options, but his disease is uncomfortable and any treatment will interfere with his quaity of life.
We're experiencing the same grieving we always do when my cancer comes back.
It's not very nice getting all these problems thrown at us from al different directions.
We are still couching X's soccer team this summer though.
My plans this week include marathon testing Thurs: PET scan, PFTs, seeing Dr. Marc, and pheresis and then pheresis again Friday.
Parties all weekend!
Congratulations to Pat and Grace for graduating with their respective Bachelors degrees in Sustainable design and Engineering from Vermont Tech and a Bachelors of Science in Nursing from university of New England.
Then Monday I go to Boston to formulate the official plan of treatment based on Thursday's test results.
What I skipped, which is most exciting, because I'm a HUGE TECH GEEK and ADVOCATE, is that on Tuesday I'm going to Concord to participate in NH's Health Information Emerging Technology Planning and Implementation Committee as a stakeholder.
This is a huge long name. I don't even think I have it right.
What it boils down to is that I get to participate in the development of NH's electronic medical record database.
I'm hoping to be allocated to the business design and infrastructure subgroup.
I'm one of only two patient representatives on a long list of NH's medical who's-who.
I hope I can bring my unique perspective as both a nurse, patient, and business woman.
I certainly have a lot of experience with electronic medical management.
I've submersed myself in knowing what is available on-line for patients and practitioners as far as tools to make a more effective, efficient health care access system.
I've been doing the reading, and there seems to be little in the way of an exact plan for implementation.
This excites me to no end. I'd love to have a voice in medical communications representing patients and nurses alike.
There is so much potential. I just can't wait to harness it.
Cross your fingers. Say some prayers. I'm in for a big week.