www.metavivor.org

Too much free time today:) I found this website, which focuses on metastatic breast cancer peeps.  from their website:

The concept is simple:  Since thirty percent of all breast cancer patients develop MBC -- a fatal condition, then 30% of breast cancer research funds and 30% of breast cancer support activities should be dedicated to MBC.  At present, only 2% of breast cancer research funds go toward MBC research and support for the disease is rare.

"People do not realize that metastatic breast cancer is widespread and deadly, and that it strikes on whim and takes 41,000 American lives every year.  Survivors think they are safe because they are 5 years out ... or were diagnosed early ... or were told they are 'cured', but MBC plays by its own rules." says METAvivor President, CJ (Dian) Corneliussen-James. "People diagnosed at stage 0 as well as 30-year survivors can and do metastasize.  You feel great one day and the next day learn you have MBC.  Your life can change that fast."

METAvivor has led the way in showing what can be done at the grassroots level. An all volunteer, non-profit organization, METAvivor was founded and is run largely by persons with MBC. Established in 2007 as a local (Annapolis MD) support program, the group began a fundraising campaign in 2008, became a non-profit organization in 2009, began awarding its own MBC research grants in 2010 and now, in 2011, is launching its 30% for 30% campaign to ensure research and support for metastatic breast cancer are commensurate with the prevalence of disease

PLUS! They have their own ribbon! I need a new ribbon!! :) Anyway, seemed like an organization worthy of our time and funds, or at least our consideration and the recognition that MBC needs more attention. One part  i found especially interesting is a discussion on feeling closer to other metastatic cancer peeps than other breast cancer peeps sometimes, because my breast cancer diagnosis seems so long ago, and on the surface has so little to do with what i'm facing everyday (it's the core, the reason for it all, and yet seems so irrelevant.).  It's a strange group to be a part of; not a survivor, not wanting to be a victim, not cured, constantly in treatment...it's nice to hear other people's thoughts about where they fit.  xojenox


for more discussion on this topic: http://gaylesulik.com/2011/05/dian-corneliussen-james-a-woman-on-a-mission/

Treatment #14, cycle 4

little benadryl, little dexamethasone, little prilosec and a little poison....mmmmmmm, yummy. so, the nurse felt that my neuropathy was normal and expected - i never can shock these people.  so, just gotta keep warm and be careful so i don't injure myself cuz i can't feel it, mostly in my left foot. interesting!

my right leg is bothering me more, where they put the rod in, in my thigh. last week i had my zometa treatment, and one of the side effects is bone pain - lucky me- so I'm thinking that's why it's bothering me more.  ugh enough about me, so boring!

maybe next week will be more fun! I'm hangin' in there!!!

all good:)

hiya, nothing new to report, just same old same old:chemo last week started new 3 week cycle. I'm feeling good, but have started noticing some neuropathy in my feet and hands.  I'll talk to the nurses in chemo on friday.  i know that sometimes they will reduce the strength of the taxol when neuropathy is a side effect.  there's lots of info on the inter webs about it;) some people have it all the way thru chemo, others have it last 5-8 months after chemo is finished or even permanently.  let's hope that's not the case - the last thing i need is neuropathy in my hands...those are the $$ makers!!! I had another massage last week (thanks Cheryl!!:)) and am hoping to schedule another one next week.  I read that massage and acupuncture can help with neuropathy; no luck with acupuncture so far, but any excuse for massage is ok by me!

Next Dr appt not until Feb 10, so I'll ask about my numbers then :) From the most recent blood test, one number is up ever so slightly, one is down just a little.  Not sure how significant that is, but will post when i know.

"New" CEA Antigen #s

Just got test results back from last Friday, my monthly barometer of how well the chemo is working.  My #s are the same! hmmm...im going with the explanation that they were already SO LOW they couldn't go any lower! That'll hafta hold me til next friday when i go back to see the doc:)