Update on my chemo, & surgery date

Pat,

You are so smart and funny!!!! Actually, my spouse has wanted me to do pole dancing for him for a long time, and is annoyed with himself that he didn't have one put in when having our new house built. Thanks for the education on stomas and I would tend to agree with you that it was how the uro managed your care when removing that tube. Anyway, so appreciate you !!! I have had to get all these shots this week due to low cell count again and I was in misery last night....got up and took two vicadin.....but I feel lucky cause I have had lots of those shots but this was the first time I have had all that awful muscle/joint aches. I think it was because we didn't wait 24 hours. Wishing you a happy 4th of July.....most here where I live will be celebrating Saturday if weather allows. Take care.....Melodie

AHA....stenosis......which is a narrowing of the pathway to the internal bladder. Well i think that can happen with either stoma....percentage is 6.5 to 39% in long term studies...???(where do they get those numbers? Isn't that somewhat of a wide spread?).... I haven't figured that out either. Anyway its about 6.7% with non navel stomas........whatever!!....There is a simple way to fix it tho which i just read about in a urological journal that they figured out at UC Davis (which is where my sister in law is a nurse...hmmmm ..small world).......My stoma looks just like my belly button did except its red..the slit is just at the base and is hidden. I've read that they can do cosmetic stomas now so as to kind of hide them....i don't know who's doing them though...just happened to pull it up on the internet. Anyway he may be right about the bowel obstruction....thats what happened to me ...my ileum got trapped under one of the ureters l0 days home and i had to go back for big time surgery. My theory on that was my not to bright uro here who had no idea what the tubes were sticking out of me and was supposed to do my follow up had to call Cleveland and ask them how to take my J-tube out. When he did it i felt a snap...like a rubber band in my abdomen...and sure enough i was in the hospital the next day......so thats my theory...can't prove it...!! I had laproscopic surgery initially so i was not at risk of being cut open for the repair surgery other than being under anesthesia again. SO i'm probably your worst nightmare ... but HEY i'm here...i made it...! Maybe some of the Indiana Pouch gals will pipe in here and tell you about their location...one of my best pouch friends has hers placed quite low on the abdomen and she loves it there......so don't worry about it. My surgeon in Cleveland said i was the first case he'd seen where that happened and as a precaution they are now tacking down the ureters...so i taught them something new!!! You have a great surgeon.. just tell him to make it pretty because you never know when you might just get that urge to pole dance...... ;D

Pat,

OK....so how big exactly is this pimple? What is the measurement? I love it how these surgeons down play these important concerns. I figure if they use the navel that it is small enough that it won't hardly be noticed by most people unless they really focus on it. The word wasn't a big word....it was just a word I wasn't familiar with so I went back and listen to the tape.....he said the belly buton has more stanosis ??? I wasn't able to find out what this means but you probably know since you are one smart lady on lots of the these medical terms. He made it sound like the navel stoma is pretty standard for kids but on adults he prefers not to due to the possibility of a bowel obstruction....and he said if that happens, then its a big deal. But yikes, if its a BIG pimple vs. a little one, I'd rather go with the navel. I think he will do that if I insist. I called one of his patients several months ago but didn't have the info. I now have....so I might try to ring her up for more detail about what her end results were. Melodie

Hi ya Melodie......gee i'd like to know the big word associated with the naval stoma...i guess after 4 l/2 yrs i don't have it yet!!......a pimple huh....big pimple....oh well. These guys have their own expertise and you'll adjust whereever they put it. I did have a complication so maybe he's right...they had to tack down my ureters so as not to get in the way of my small intestines.
Got to get to my pole dance lessions!!
Anyway you will get thru this.....i've got your back!!! Pat

Went in yesterday to see surgeon ...apparently we have enough in the way of good reports from my oncologist that my surgeon says I can forget the fourth session of chemo, will just finish the last two sessions which should end somewhere between 7/5 and 7/12. The surgeon wants me to come in for a cysto. on 7/19 and then do surgery on 7/25. All this time I was thinking of my surgery date for 9/15 and then 8/19 and now its July...yikes!
I'm just not ready for this....but who the heck ever is???? ??? Now we get to see how brave I really can be. In some regards I am just plain tired of waiting weeks and weeks and certainly sick of chemo, although I recognize there is always the possibility of post chemo but I pray not.

Since I am slated to get what I like to call the "Indiana Pouch", I asked him if he places the stoma where the belly button is....he says he has done this, but doesn't like to do it due the possible problems that can occur.....he used some medical term which I can't spell, and also said that if there later should be any bowel obstruction, we would be in trouble. He said, it's only like the size of a pimple so its no big deal unless you plan to become a pole dancer....I should have responded with, "why not?" This was a very serious meeting for me so I wasn't much in the mood for humor. And sure it's no big deal in his mind....all of this is routine for him but not so for me. I had really thought it made good sense to just use the navel as some doctors do, but at the same time, feel I have to give him some credit for knowing what he is doing. He is the head of the urology dept. at a major university and does 80 or 90 of these surgeries a year. He comes off as a no nonscence, straight shooter, take charge kind of guy so I will have to be very outspoken about anything I want that isn't in agreement with his thinking. Unfortuanately, he and I only had about 20 mins. to discuss my concerns before he was called away to surgery.

I am hoping we hear something next week from Joe and Rick to learn how they are doing following surgery last week. My surgeon said I could possibly be back to work as early as 4 or 6 weeks but I'm very doubtful given all I have read about recovery on this site and in my phone cons with other BC warriors. I think these surgeons try to make it sound easier than it actually is but I suspect that is because most of them haven't been there. Melodie