Jul 29, 2019 Latest post:
Nov 14, 2019
As some of you well know, I have been diagnosed with Clear Cell Sarcoma. What is this? I asked the same things to my Doctors who were unsure as well!! That's how RARE this damn disease is!! About 1% of cancer patients get Clear Cell Sarcoma's, there are about 50 sub types of Sarcomas at the moment. I happen to get one of the rarest of all!! Goes along with the Squamous cell carcinoma I had in my mouth some 6 years back, and the West Niles I got and ended up in hospital with and turned into a horrible bout of meningitis ! I need to be playing the lotto...Haha. Anyways, Clear Cell Sarcoma (CCS) is a soft tissue sarcoma. It likes to start in the soft tissue, ligaments ect and travel thru the lymphatic system. it can lay dormant for years, then rear its ugly head!! which is what mine has done already. I had a lump on the bottom of my left foot for a couple of years. showed a couple of Doc, really no worries. then last year it started to grow and become quite painful. so I went to a podiatrist and they did xray and MRI. Pretty sure it was a ganglion cyst. I go in for a "mass" removal and they send it off to pathology at Sparrow. I wait a week, no answer, I wait another week....still nothing. then I find out they sent it U of M for second opinion. November 30th, 2018 I get the news that its Clear Cell Sarcoma. AND, they did not have clear margins after surgery.....that's how my story begins!!
I'm referred to the U of M Sarcoma Clinic because this is the only Sarcoma center in Michigan. (Do you know how hard it is to not walk in there and yell "GO IRISH"!!!). lol January 15th I have a partial left foot amputation. They took my 4th and 5th toes, along with metatarsal bones. kinda looks like a shark bite...lol. I begin the every 3 months chest xray and every 6 months MRI of my foot protocol. Everything was clear up until recently. I was having back spasms, finally went in for xrays and CT....thank the Lord I love my primary Doc, she ordered what was needed and got us a head start on this fight!! As that's when we learned it was back.
We started this page to make it easier to keep everyone in the loop. I'm blessed enough to have GREAT family and friends!! I have a wonderful husband Mark, and two teenage boys Jed and Jimmie at home still. I also have two adult boys, Kristopher and Ryan (Brandi) along with a handful of Grand kids that I just love to pieces. Please feel free to post prayers, offer uplifting support ect. if you know me at all.....I do not want sympathy!! That's not how I roll, so send your strength, prayers and good vibes my way because I'm going to need it!! I'll try and keep updated with the journals!!! Much love to you all.....and forever and always..... GO IRISH!!!!