RIP Missy
Current mood: scared

http://www.myspace.com/jacobsandjuliasheart

My very good internet friend, and IBC sister passed away Wed, leaving behing two young children.  Not only do I miss her terribly; but her death just brings to life the grim reality that my IBC could come back at any moment and do the unthinkable.

Despite the good, bad, or ugly going on in your life, enjoy it!  Find laughter, enjoy your friends and family, and appreciate it!  Regardless if you live 10 minutes or 100 years; life is too short to waste!

Missy was so strong and lived her life up to the very end.  She went through countless painful clinical trials at Karmanos to try to fight the cancer that had taken over her body!  Yet she was happy to be home and enjoy her children; and it was a challenge to find the strength/energy/patience to enjoy them.

For those who don't know; IBC is a very rare and aggressive form of breast cancer.  It doesn't show up on mammograms or ultrasounds because it doesn't form a lump; thus it isn't found in a self breast exam or clinical breast exam either.  It isn't found until your breast grows, turns red, your skin pits and gets bumps (like zits), your nipple inverts and discharges.  By this time it is a "stage IIIb cancer" (really big and in the lymph nodes) or stage IV (past the lymph nodes and in other parts of the body).  The statistical survival rate of IBC is currently 40% survive 5 years; it's actually better than that the statistics just haven't "caught up yet"; probably more like 50-60% now.  Most doctors have never seen it; it goes misdiagnosed and mistreated.  They are working on classifying it separately from breastcancer as it does not act like breast cancer; it acts more like a skin or blood cancer.  The improved statisics are from increased education of the public from other IBC survivors spreading the word; so that diagnosis/treatment can begin before it is too late..
http://www.msplinks.com/MDFodHRwOi8vd3d3LmliY3Jlc2VhcmNoLm9yZy9zeW1wdG9tcy8=

In October of 2006 (4 mos after my diagnosis) MD Anderson opened the world's only IBC clinic; and they are the world leader in IBC research.  You don't have to go to MD Anderson IBC Clinic (http:/www.karmanos.org/); but your doctor needs to be following their "most recent" protocol and should be consulting with them.
http://www.msplinks.com/MDFodHRwOi8vd3d3Lm1kYW5kZXJzb24ub3JnL2NhcmVfY2VudGVycy9icmVhc3RjZW50ZXIvZEluZGV4LmNmbT9wbj04MEI1NjcwQi03RjNELTExRDQtQUVDODAwNTA4QkRDQ0UzQQ==

My original medical oncologist was Dr. Frankie Holmes http://www.msplinks.com/MDFodHRwOi8vd3d3LmJyZWFzdGNhbmNlcmRvYy5jb20v; previously of MD Anderson and one of the leading breast cancer doctors/researchers in the world.  I am currently with Dr. Decker, who is also an excellant doctor http://www.msplinks.com/MDFodHRwOi8vd3d3LmNjYXBjLmNvbS8=

When I returned to Detroit when I was in remission to do my radiation; she referred me to Dr. Frank Vicini  who is world renowned and "wrote the book" on radiation therapy.  http://www.msplinks.com/MDFodHRwczovL3d3dy5iZWF1bW9udGhvc3BpdGFscy5jb20vcmFkaWF0aW9uLXRoZXJhcHktYnJlYXN0LWNhbmNlci10cmVhdG1lbnQ= (I eneded up seeing his associate Dr. Inga Grills since his calendar was booked and couldn't get me in "on time"; she took great care of me.)
Hugs
Jessi

 I also just found out the mother of one of our group members here just passed on Tuesday.  I HATE BREAST CANCER!