The Words Beneath My Fingertips

Just got my path report in the mail as promised. I love pathology language. First of all, I love how it begins with this: Study of Indication: Left retroperitoneal mass on previous MRI for characterization. -- I was not told about this in September as I said in my video in my last entry. I can't believe I was WITHHELD information. I was only told about my LIVER. Can't wait to bitch to my gastroenterlogist!! Findings: There is a left retroperitoneal  lesion measuring approximately 3.7 cm in craniocaudal and 2.4 cm in transverse dimensions, with an oval morphology. It lies parallel to the psoas muscle. [then it goes on to explain in scientific terms how the tumor lit up in different lights/magnetic intensities]. There are two smaller lesions, one in the right rectus muscle (5:15) measuring 12 mm and the other in the right lateral abdominal wall measuring 5 mm (5:12). Findings are highly suggestive of multiple nerve sheath tumors. Clinical investigation for neurofibromat

Video talking about information I just found out about my NF- why does my medical  life have to be so complicated?

I didn't think about NF at all, even though I still had NF headaches, lower abdominal pains that may or may not be NF,  etc. I Graduated from college in '05, got engaged, lived in China for a year, abdominal pains still bad, blah blah blah Came home from China, moved to SC with my fiance.  I hadn't had my eyes checked in years, so I went to the Wal Mart optometrist to get my eyes examined. The doctor was a bit freaked out abotu waht she saw during the examination and recommended I see a neurologist. I didn't have health insurance, and told her I knew I had a tumor on my brain,but I'd see one as soon as I got insurance. Oh and by the way- my abdominal pains were still pretty bad. Life went on in good ol South Carolina. That was November 2007- getting insurance didn't happen til August (same year) when we  got married and moved to Boston. My husband found a neurologist at Mass Gen that SPECIALIZED in NF- how lucky! Got an appointment for December. 

My mom told me I had NF when I was really young, probably 5 or 6 years old (I am 27, 28 in a couple of months). She explained I had NF when I asked why I was sooo freckly. She also has NF and a lot of freckling, but many of her fibromas are external. Nothing was ever said about it for years. When I was 8 or 9 there was a fire down the street, and being kids, we all ran to check it out, and on my way running to the scene, I skid my toe on the road, obseved my pitiful cut and that's when I noticed a big bump on my toe for the first time. Didn't think anything of it, t hought I hurt it, but it never went away. Just thought 'whatever'.  When I was 13 or so, I was at the doctor's office with my older brother. He was sick. My mom and I were in the examination room with him. (He was maybe 15). The doctor came in and gasped to my bro and me "YOU HAVE NEUROFIBROMATOSIS!" that was the first time I heard about it since my mom told me I had it. Whatever...so I had

Thus beginneth my first blog with Blogspot. I am interested to see who will actually read/follow this blog, especially once I get it up and running. While I will be writing about a lot of things, I will focus on my life with NF and my life as a stomach cancer survivor. I know I am not the only person in this country with NF or who has had stomach cancer, so I wanted to start this blog as an outlet in hopes to find other people out there who go through similar things. Stay tuned for more musings and rantings. I rant a LOT. A LOT.