I am lost for words. My breathe is gone... I can't breathe. My heart aches and tears rapidly flowing down my cheeks. Today they tell me there's a good chance I won't see my lil boy start school, my lil girl walk down the isle or give me grandkids, my Zach graduate high school. I plan on proving them wrong and fighting ...the biggest battle I have ever fought. Today I found out I have cancer - untreatable cancer...a very rare cancer that even rare cancer people don't have. Today....I must be strong!
urachal adenocarconoma is what it is called. I have a cat scan next week to see how far in the muscle it actually went.
2% of bladder cancers are in the mucscle. 98% are in the lining. Mine of course is rare in the muscle. But in that 2% I fall into another rare category that even those people don't get. They know it is very aggressive and most likely will come back even when they do what they are going to do. I need to be watched like a hawk. It likes to come back in the pelvis even with the bladder gone. At 5 years if I make it that long only 50% of people made it that long. 2years is usually the determining factor of how things go. Radiation and chemo don't work...it doesn't react to it.
2% of bladder cancers are in the mucscle. 98% are in the lining. Mine of course is rare in the muscle. But in that 2% I fall into another rare category that even those people don't get. They know it is very aggressive and most likely will come back even when they do what they are going to do. I need to be watched like a hawk. It likes to come back in the pelvis even with the bladder gone. At 5 years if I make it that long only 50% of people made it that long. 2years is usually the determining factor of how things go. Radiation and chemo don't work...it doesn't react to it.
so right now..catscan Jan 5 to see how far in muscle and where abouts all the cancer is.
Then we have one of 3 options...
1) partial cystectomy where they remove part of my bladder (top part) and sew it back up. problem is that after they send surrounding tissue to lab it may have cancer in where they cut and so I'll have to get it all removed anyway and more surgeries.
2) complete removal of bladder and replace bladder with a piece of my intestine to make a pouch...but I have to catherize myself to empty the stuff that cant come out because it doesn't contract. It also still produces mucous so that has to be drained as well. there is a high risk with this one. Also high infections with it as well due to the cathetor.
3) complete removal and bypass with intestines. So basically the urine will pass through my intestines into a pouch on my side.
either way I have to have my lymph nodes removed, a complete hysterectomy, and a triangle piece removed. (apparently when you are being created you pee through your belly button. when you are born it is tied off..thus belly button. That tube that was carrying waste usually collapses. Well mine didn't and the cells stayed causing the cancer at the top of my bladder. that tube needs to be removed now)
so that is all I know....I will be doing research in the next couple days. Telling my immediate family has been very hard...especially lil Zach who instantly was in tears. And poor Bella just wants to give me medicine to make me better. If only that was the case sweetheart!
I have pretty much been a robot reciting word for word what was told to me to every person close to me. Seeing and hearing the reactions has to be the hardest. Even people who don't pray and believe in God are praying for me...so you know something stronger must be controlling us all. I don't understand why God has chosen me to fight this battle with 3 kids and a new husband but he did. I need to find my strength...I need to find my fight. Today...I will get through the initial shock and tell everyone while I am going through the motions...the days ahead...won't be so easy.
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