Hello I am new here...

HI,
I am so glad you are there. You will find that once you are on the "treatment train" as I call it you feel empowered and in control of things. Before I started my preop testing I felt so nervous, scared and out of control and Claire told me that the anticipation is the worst part and she was so right. You are going to feel incredibly different once they start making you well.
All of my best wishes and prayers to you. You are very brave to have taken control of things the way you did.
Blessings....Jean

I am in Rochester....even got my basic labs done We left last night - just to be sure we are here. About 1/2 hour ago we heard the interstate 35 had been shut down and they expect to do that with most of the tri state interstates. It has gone well so far, I am hopeful to be leaving here with answers and a confident plan.

Last night I started having sharp pains again. Then started passing small blood clots thru the nite. This AM it started with red blood again. Is this normal to have happen 2 weeks after the TURs? I know I will see the Dr in the morning....just would like to get my mind to relax b4 then if I can.

Thank you for the prayers, Holly

I managed to get my pic up uploaded too Do I look like a hardworking german girl LOL

Great...now even the weather won't cooperate.....get the snow tires....dress warm...bring food and water......say a prayer that the front stalls........bring ski's!!!...My son just got stuck last week in that storm in Penn on the interstate......they were on a skiing trip.....So of course...they skied out of it.....only the young!!! I'm so glad you're going to Mayo...they will treat your whole body. I'll even say a prayer for you and i rarely do that as i figure the big guy/gal is pretty busy winning basketball games or the such.
Please keep us informed.
Just know in the larger institutions they will send you to many departments for tests and they never run on time but they know that and they will wait for you.......Pat

Indeed I think things will be better...you know The UW Dr still has not made contact...The ball dropping they have done has convinced me that I do deserve better care. I was able to talk to an oncologist today who explained the ct and scan results. The nodule is only a few millimeters right now and the tumors in my left shoulder bones is suspected enchondoma / bone infarct. It is possible both are benign, but if bladder tumor was micro papillary ...that factors in bigtime. Frankly, I just want them to be on same page and atleast as aggressive as the cancer.

Now this blizzard that is rolling in to Rochester.....lol what luck...I am able to get the rest of med records at 2pm tomarrow then we are en route the 4-5 hour drive. I am thinking maybe new snow tires tonite are in order. Have no doubt - this chick will make the appointment.

I love you guys, I don't know how you are able to do what you do...but you have been a tremendous force in my ability to cope with this. Bless you all.

Holly so glad you are going to Mayo to the head of the dept. of urology...take all your path reports with you and your history...get a copy of your CT scan (they should have it on a CD)...your bone scan...everything. They have an excellent program there and i feel positive you've made the right step. They have an enormous team and considering your history they are going to head you on the correct path to survival. Let him know how long you've been in pain and your emotional frustrations. I feel certain that they will lead you down the right path even if it means chemo first and they will have the first line of defense there believe me. The big guys all talk to one another. They will know of places for you to stay at a discount and i would really recommend you stay there for the treatment. Have mom bring a pad and pencil to write things down...my mom always had a cool head when i didn't....moms seem to be able to do that. Congratulations on making a very informed decision. I wish you well in every sense of the word......Pat
P.S. I read that they are exploring new ways to make the bladder without using the intestine?....I'm very curious about that. I shall have to explore it further.

I am so glad to hear you are going for another opinion. I have been following your posts but this is my first response. When my husband had his RC in October with a neobladder at Norris/USC, he was told the surgeon cuts - the support staff keeps you alive. A caring doctor would not tolerate the treatment you have gotten from his staff. Good luck at Mayo. It is a scary time but you are making good decisions. Remember, one day at a time and this too shall pass.

Sam