Station Break

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Stand Up 2 Cancer

As many of you probably know, tomorrow evening, all 3 major television networks are airing a special titled “Stand Up 2 Cancer”. Despite the fact that this is yet another place that fails to recognize orphan cancers like mine, they have good intentions and anything that brings money to additional cancer research will eventually impact the research and funding towards orphan cancers. I guess in some ways we are fortunate because drugs and treatment options for colon cancer often provide a little help for Appendix Cancer. It’s not quite the same as money dedicated to research strictly on Pseudomyxoma Peritonei, but hey, beggars can’t be choosy can we? So I thought I would share with you, what I recently posted on the interactive section of the website www.standup2cancer.org :

**I have appendix cancer - you probably have never heard of it. Neither have most doctors. It's also called Pseudomyxoma Peritonei (literally False Tumors of the Peritonium (lining of the abdomen)) but the tumors are neither false, nor limited to the peritoneum. I've been battling this for 8 years - when asked to chose if I am a survivor or in treatment, its hard to say. There is no treatment for me at this point - I'm still alive 8 years later, but does that mean I'm a survivor? Most days I don't think so. I suffer from side effects from 7 major abdominal surgeries - I have chronic diarrhea and go to the bathroom up to 20 times a day. With my next surgery, which could be in the next 6 weeks, I will lose my bladder and be left with some sort of external device to urinate through. I have only 1 kidney left - I lost my ovaries and uterus at the age of 31. It's a struggle for me to get up and go each day - but I do. I work full time - I travel, I walk my dog and mow my lawn, last month I jumped out of an airplane and I want to do it again, I try to live a life. Not the one I wanted, not the one I planned to have when I got married, 6 months prior to diagnosis. I have a wonderful husband who stands by me through all of this - who has given up his hopes and dream to care for me. But now I'm tired. And this next surgery will mean some major changes for me. I may have to give up traveling - I will have a bag to catch my urine, but still have to run to the bathroom a dozen times a day because of the diarrhea. This is the real cancer - it's not pretty - it's not "crazy, sexy, cancer" I've never worn -lipstick to a surgery. It's ugly - It's hard - It's not a fight - I'm not "Beating It" - It's eating me up, piece by piece and it's not going to stop until it finishes me and there's not a thing I can do about it. So I wake up each day, get out of bed and deal with everything this cancer puts in way. Just once I'd like to see a list like yours include "Appendix" or "PMP" in the list of cancers - just once I'd like to see some money go to research to fight an orphan cancer - have 1 major hospital learn how to properly treat this cancer and not consider it a death sentence - to have the sense to tell a newly diagnosed PMP patient to seek out a specialist and not tell them to go home and prepare to die. Sadly I know this may not happen in my lifetime - but I know my husband and others will continue to get the word out - that my struggle will not have been for naught. Appendix cancer or not, I've lived and will continue to live an amazing life - I've done more than most and for that I am grateful. **

OK, so perhaps the anxiety of waiting for my latest MRI results is weighing a bit too heavily on my mind at the moment, but I sat down to write “My Story” to add to their site and this is what came out.

So if you are around on Friday night – tune in and see what they have to say – who knows perhaps enough of my PMP Bellybutton friends will have posted their stories too and maybe Katie Couric will do a Shout Out to all us PMP’ers.

Stay tuned for the next installment in my “Desperately Seeking Adrenaline” Adventure series.