Hello everyone, hope all are doing well
Yesterday was beyond crazy - 3 Dr appointments, a lab and they changed the surgery to get the port...it is being done today rather than Friday and Monday is the 1st chemo. As I went to sleep afew things started nagging at me - help me sort this out too?
First appointment was the shrink...I think it went well. She determined I am "situationally" depressed, that it is a result of the dx rather than for no obvious reason. We didn't add any meds yet but she encouraged me to take the zanex as needed. I see her again on Tuesday.
Then I met with an oncologist - they aren't approved by my insurance and seriously distressed me over the financial aspects of treatment. I decided to scrap interviewing them as the mental stress would be monumentally counterproductive.
Then I met with the oncologist I originally got set up with here....I aired about what had me feeling unsure about him and hopefully those probs can be avoided from now on. Afterwards I went home and called Mayo's to be absolutely sure we are ok...that is when I got these nagging concerns....
I asked the Mayo oncologist to send the regiment for chemo so that I can be sure what I am being told here matches what they would reccommend. I was told these chemos are calculated universally according to a patients weight, that both would be calculating the same . I was not expecting that response. When I asked about the diuretics etc ( as I posess a new neobladder ) they said the local oncologist will determine these things. Again not the expected response. Fortunately the local oncologist is contacting Mayo to be sure if there are special considerations in the case of a neobladder patient. Why would Mayo's not prepare a regiment?
Then I also asked about the dx - it ended up being Stage3N0MX after the cysectomy. I wanted to know why the "M" had been left undetermined. Did we not do all the scans etc to verify no mets or what? I was told that all scans/tests had been done. That the reason mets is undetermined is because of the nodule in my lung. Next month they will do another scan to see if it has grown and verify if it is mets. I was stunned...they ledme to believe it was a scar and not to worry, the fact they even thought it might be mets was not clearly expressed before. Then I was told if it is mets, that I will be stage 4. Bring on the zanex and try sleep thinking bout that.
So the zanex has wore off and I am trying to feel less freaked out. I guess the only thing that has changed is my understanding but it sure has me distressed.
As far as my RC recovery...I am almost done with the vancomycin...c diff seems to be dissappearing. The past 4-5 days without Bentyl have helped me feel the prompts to hit the bathroom...not always sure for what but I get a clear message something is going to happen. The yougurt and probiotic drink have helped so much that my hubby has decided it should be good for him also :)My incision has healed up well - I am wearing my jeans and clothes pretty much.My right leg is really screwed up tho. When I walk I can basically control the leg. But if I have to move quickly I have little control over it and I stumble alot. And I have to physically pick it up to get it on the bed, in the car etc. The inside of the thigh and the back of the thigh don't feel right. It has been this way since the surgery. After the surgery I was told it was likely due to the position I was in for the surgery. Last week at Mayos they said it may stay that way. Anyone else had such a thing?
Take care all - you are in my thoughts and prayers, Love Holly
