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anyone dealt with "C DIFF " during RC recovery?
Hi Friends….
What a time it has been… We left Mayo’s Wednesday – just 8 days out of R/C Neobladder. On Thursday night I started with diareah and fevers. By noon Friday I had to be admitted for C Diff, dehydration, you name it and it hurt. I Came home yesterday with my own private pharmacy. Even had a cardio DR because my heart was also jumping around. I am feeling better finally. Irrigating every 6-8 hours , down to 12 pills a day from the 28 they had me on during the last hospitol admission. Talk about having to fight for every inch of recovery…
My question here , has anyone hee been hit by a “super bug” during R/C post op recovery? And if you did…did it affect your scheduled chemo? I had no idea such a bacteria as C Diff was even out there. I have been told I got a ways to go now before I can consider myself chemo ready. I have lost almost 20 pounds, but I am diligent in trying to eat calories and protein. Seems a bit much to me that pills has become almost a food group in itself.
During the last admission I also was treated the urologist who originally dx’d me and did my 1st TURBT. I was nervous at first – he was very upset when I wanted a 2nd opinion on his BCG treatment plan. He has apologized to me and told me he is glad I went with my instints. And he assured me he will gladly play ball with Mayo Drs. So I guess a relationship is also getting healing. I feel I can call on him to help me and it is comforting to know medical help is also locally available to me. During the last hospital stay I did not run into a single nurse or Dr who had experience with a neobladder. Believe me – I asked before anyone layed hands on me.Are we really that rare?
Well, I have to get going for now. I am hoping to get some home help with the nursing dept scheduled today. Also getting my port installation scheduled. Love you all, Thank you everyone for all the prayers, Holly :)By the way…My final stuff from pathology = Grade 3 T3N0MX micropapillary urothelial carcinoma. The variant was confirmed at Mayo’s. I have been told that when 1st scope was done in Dec and the doc saw nothing… that it was likely growing in the muscle under the healthy tissues and not detectable. I would just like to pass along this…If you have blood in the urine and a negative scope…push for a top notch facility please….they can identify this variant thru cytology from urine and make a quicker DX and this variant is also very fast growing.
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43 Replies
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Claire……..a pint of chocolate icecream mixed with Ensure……guaranteed to put on weight and tastes great!…….. ;)
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Hi Holly
You sound on top form I am so pleased the first chemotherapy session went OK.I can remember laying there thinking bring it on lets get this over with but at the same time almost waiting for the side effects to kick in.
It really sounds like your getting your head straight and that the doctors are getting you sorted out.
Take care
Lots of love Claire
ps send me some weight gain tips -
Holly, you are a trooper.
And guess who loves you too!!
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Hey! 1st chemo is done – it sure went much better than I thought it would. The port was a Godsend…even not being fully healed up yet. Both the gemzar and cisplatin were done with all the rest of stuff. I am tired but ok. It took almost 5 hours. By the way – I weigh 127.4 now…I am tryin to gain wait. Love ya all, Holly
Good Morning you beautiful friends,
Well, today is the day..I am 56 minutes from my 1st chemo treatment. Had to take a zanex to sleep last night. The port sure is tender yet, getting better but tender no less. We shall see and this too shall pass.
I am also done with vancomycin finally! Hopefully c diff test will not be far off. I understand chemo can bring it on too so I really want to be sure it is gone! 2 episodes was more than enough.
Just a few catch up thingees…lol. Pat, they are sure my leg has no blood clot. It is from the surgery and they are saying “nerves behave strangely” – it might/might not change – who knows. It gets frustrating trying to excercize it or trying to make it behave normally. When I get tired it is more obvious and makes me feel like a derelict.
Rosemary, my goodness, your poor little toes! They my friend are in my prayers:)
Wendy, I like the additions to the forum subjects. So glad you have a helper to address these very needed topics. I have figured out something I can do to contribute and I am very excited about it! I will PM you very soon once I have it all ready later this week:)
Claire – get that foot checked out! Just to be sure :)
Thank you for all the love and support – I gotsa get going tho – my ride will be here in 20 mins and I amin PJ’s ! Love, Holly
Well heck holly…call Indiana University Med Center .. they’ll give you the universal protocal. How wierd. When my son was diagnosed with testicular cancer he went to see the doctor at Indiana Med who discovered the cure for this particular cancer…he was only too happy to share the protcol with my son and recommend that he do the chemo close to home for his own comfort but he also stated he wanted him to know exactly what he would be given and dosage amounts so that he could keep them honest…and if there were any problems then he was to head back to Indiana U. I remember talking to one of the surgeons there when i interviewed there for my cancer and he mentioned the gemzar and cisplatin plus a third drug i can’t remember right now. But that was 4 yrs ago…things change. And it looks like your oncologist wants to do it right and is going to be in contact with Mayo….but just make sure you know what it is ahead of time. The nurses attend you..not the docs…….always a heads up approach.
I still have one area of neuropathy on my left leg…completely numb…and like i told you i got a pain down my inner thigh which comes back…but a chiropractor seemed to know the right thing to do to get the nerve off whatever it was pressing against. And i would just maybe ask the doctor about doing a doppler on the leg thats bothering you just to rule out a DVT. Thats not to alarm you because it probably isn’t it…but i did have one in the hospital and all i remember was my leg felt like an elephants leg…i’m very hazzy on it as i was being plied with all kinds of pain killers and remember very little…i remember looking over at my husband at one point after a nurse brought in coumadin for me to take and i asked him why on earth i was being given that to which he told me about the DVT…and having regained some consciousness i said “They’re supposed to treat that with 7 days of heparin first”..quite alarmed…..and he said ” You’ve have been”……..So i lost 7 days somewhere…I hope i went somewhere nice :D
I know the port hurts…my friend who had colon cancer had one implanted same place as yours and she said the chemo was nothing compared to the pain of that #$%^&*^^$# Port!!!!
So i wish you nothing but wellness and sunshine………….PatHi all :)
I have indeed recieved PM’s – just not typing much til it is easier from the port going in. The port is a bigger lump than I was expecting. My Mom and hubby thinks it is too but they also think I have nowhere to hide it…no fat. Oh well, as long as it works :)
As far as my leg, that has not improved at all since the surgery. I can’t tighten up the thigh muscles, make it go where I want it too, or make it move quick and smooth. It is how it is. Frankly – I am just grateful to get urges to pee and get my bowels on track again.
With Mayo’s on the chemo – I am not sure what the deal is..it seems dr’s have a code they don’t like to suggest what another dr should do even if it is a continuation of treatments of various types. I just want my best shot to be unemcumbered by egotistical or ignorant docs. There is no do over if it gets botched. They are doing cisplatin / gemzar.
The undetermined mets….The lung nodule and the tumor in my left shoulder bones have not been defined as benign . They will know after the next scans so it remains “undetermined”. Again – it is what it is – I can’t worry about it anymore. All that changed was my understanding.
It is 75 degrees here and sunny – this chick is hitting the patio 8-) Love you – I’ll write more as my right arm hurts less! Holly
Holly..did you get my PM on your leg? I got a wierd message after i posted and wondered if it went thru? Pat
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.Hi Holly,
I’m sorry to hear that the stress factor is still so high. I also don’t get why the oncologist was so vague in those responses regarding chemo and diuretics post-neobladder. Which chemos are you getting?
You’re doing a fantastic job in spite of the scary hurdles placed in front of you. Yes, I”ve met a few people with nerve damage in the leg(s) post-op, but it almost always gets better in time.
Wishing you well,
Wendy
I was surprised to hear that mx meant metastasis undetermined. I was classified t2nomx and told that there was no metastasis. Now I am wondering.
Hi,
I would think if there were actual mets you would have known by now. Could it be that the technicians were unclear about a test result and just left it open? I would also want an explanation, but I suspect it’s just a matter of semantics.
WendyHello,
Well, the port got installed yesterday and it went well. It is very tender and swollen. Myweight is up to 126 and I am almost done with vancomycin so I get a c diff test come Monday. Hope I pass this one! Monday is 1st chemo too – Gemzar Cisplatin. Mayo did send a packet of info by fed ex… from the oncologist up there. They want my scans etc done next month which will be 3 monthes from the last time they were done.
All in allI think I am holding up ok. I keep hearing how I have made a remarkable recovery from the surgery in spite of the c diff episodes, makes me feel like a champ. So now I am pep talking myself into getting the chemo done and behind me in the best form I can. Making goals and a plan:) Thanks for helping me get this far with my mind intact .
Thank you for all the support and messages, I will get more messgaes back out soon – when I can use my arm again! Love all
I was surprised to hear that mx meant metastasis undetermined. I was classified t2nomx and told that there was no metastasis. Now I am wondering.
Holly
Take a deep breath .
Just try and slow down your whizzing around mentally and physically just reading your post leaves me exhausted.
1, Its great news you are getting some help with dealing with all this and just from communicting with you here its obvious you are normally a positive upbeat person and who wouldnt be a bit depressed about our diagnosis.
2,Sleep is a fantastic healer and keeps you sane use pills or anything else to meake sure you stay rested.
3,In reality after the scan showing something on your lungs you dx was never going to be any different until they determine its not cancer would you really want them to discount it.I know I wouldnt.
4, The Mayo responses are to be expected they are just protecting themselves legally.
5,The leg thing sometimes nerves get bruised during surgery and it effects sensation and even function things usually improve in a few months quite a few people seem to experiance this.
You sound as is if you are doing fantastically well and you have really taken hold of making sure you get the best treatment.Which is great it scared me to death at the start that you were letting it run away with you.Now try and relax and trust the decisions you have made about the people caring for you.Chemotherapy is hard you need to keep focused on staying positive about it and plan something fantastic for when its over to give you something to aim for.
Take care and remember we are here
Love Claire xHello 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
Hi Holly
Great news I really think if your having chemo the port will be your friend.You could almost see the nurses sigh with relief when the saw mine it makes life so easy.
You will get there if I can come out the other side then you can and keep in touch post,pm, email anything you have done so well to get where you are you will be fine.
Take care Love Claire xxSign In to reply.
