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Ah, Lainy you can laugh at me it you need…..I laugh at myself more often than not. I try like hell to just keep laughing and finding the humor in all this….the flip side is if I quit laughing I am afraid I might start crying and then I wouldn’t stop. The chaplain at the hospital always stops in when we are there and she told me the other day that she wasn’t sure she could keep a smile on her face and the laughter coming like I do if she was in my place. I told her that’s just the way I am. Laughter really is the best medicine.
Mary – no apologies needed for telling your story. I love hearing them and it definitely makes me know I am not alone. Those that had traveled the path before you are the best guides. They did pull the port out this time and are culturing it but the Infectious disease doc doesn’t think it’s the source but we had to eliminate it. We are not back looking at what’s left of the biliary tree and the anastamosis between the bile ducts and small bowel. See GI doc on the 20th.
I know my husband tried really hard to reduce my stress and he will sometimes hide things from me….especially when his temp goes up. This last time he thought he got away with it since I was in the hospital and banned him from coming to see me. The kids are my eyes and they caught it so he ended up going anyway. I got on him pretty hard telling him that this makes my stress worse, not less. Think he gets it.
I am with Lainy….either call the ONC or take him to the hospital. One thing that might help is give him a choice of one or the other….either call or go in and promise that if the ONC says go in that he will. One of the problems I have with my husband is his lack of control in his life. He would get frustrated and angry when he felt like all choice was taken away. He had an elevated temp recently and I knew he needed to go it but he was resisting me terribly so I told him to call or go in. He called and the ONC told him to get in ASAP. He still didn’t want to go but it wasn’t me telling him to go. He still grumbled but was in the ER. Guys can be hard sometimes especially when they start losing control and lose the vision of being the strong one in the family.
He may also need a stronger pain medication Tylenol 3 is not really all that strong and it may be his pain is “normal” pain but not well controlled. You may also just taking something routinely…like once in the AM and then again in PM. You can get better control that way.
Hang in there and keep an eye on him.
We are here.
I have to say Lainy, you crack me up….that is so totally something I would say or at least think of. Even my husband got a chuckle out of it.
We are on Levaquin and it seems to be the drug of choice now….at least the third time we’ve gone home on it. They are talking about just running him a 7-10 day course after every chemo since the chemo seems to be the trigger. We’ll see.
WooHoo! That is great news. Congratulations!
I read through the initial article and some of it does make sense. And if nothing else then it another avenue to explore. I will read the rest of the articles as I have time. Thanks for posting.
We are home now. A little stress at DC as usual, especially when dealing with resident and attendings and all that. Just put my foot down and said how it was going to be. Too tired to argue with them anymore. And when I get tired i get crabby…..have to laugh though Mark keeps telling me to calm down and control my stress….lol….not sure that is going to happen.
I was a new bug….Flavimonas (sp?) which the infectious disease doctor says is very common in those with any sort of GI Cancer. The really good news was his body fought this off on its own since the antibiotic IV they gave him didn’t cover this bug. They did send us home on oral antibiotics for 2 weeks and we will do chemo come hell or high water next Friday.
They want a consult with a GI specialist since it appears he is leaking bowel bugs into his blood stream somewhere. They are talking about doing an ERCP and stents but I am still wondering if the risk of infection with stents out weight risk with the continued blood infections. Questions to ask I guess.
Dear Patzel – Too quote Lainy welcome to our wonderful family. Sorry you have to join. I would agree that asking questions and asking more questions will get you answers. Remember the squeaky wheel gets greased and quite often you have to be the loud squeaky wheel. You are your BF’s advocate now. Read as much as you can and ask for a second opinion. I don’t know iif you live in a smaller town but it may be time to take a trip to a bigger area where there is a university or teaching hospital. I would think they would need to continue to monitor him closely, especially after taking the stents out and with the pain. Good luck and keep us posted.
Dear moontje – so sorry Tom’s cancer is back after 5 years. It is good that he is eligible for surgery as yes that is a word we love to hear here. I don’t know about chemo before surgery since we went right to surgery after diagnosis. My husband had a Klatskin’s tumor and because of placement they took about 60% of his liver along with some surrounding structures. The surgeon is pretty sure they got it all but we have started chemo on the advice of the oncologist who wants the best shot possible. They (surgical team and oncology team) told us the only change for a full remission (cure?!) was to have surgery. Now we play a waiting game. Good luck with it all and keep us posted. I am especially interested to hear how it goes.
Lainy and Kris
Thanks for the support. It is really hard to just sit here but I know that if I don’t it will make things worse…..I am actually catching up on some DVR shows that I haven’t had a chance to see plus I have some fun reading to do. My daughter is being very helpful and have the little grandbaby running around helps some. I doubt I will stay away the whole time….I will probably go up tomorrow afternoon maybe and stay.
My son will head off to Central Washington University in Ellensburg Wa….middle of the state. He’s majoring in exercise science and minoring in nutrition. He wants to be a personal trainer or life coach….maybe a trainer for a sport’s team.
They got the port pulled a it ago and now they are finding something growing in the blood cultures and it does NOT appear to be the same bug. Now it looks like something new and maybe the port didn’t need to come out. It’s too late to worry now.
Thanks for the support.
That is awesome news, Heather. Congratulations! Having a breakdown is expected I have had a few of those, too. Also remember that there are new medical breakthroughs and treatments everyday….tomorrow may hold the answer!
Congratulations! Shrinkage is a great word to hear!!!!
It’s great that you have a good support system. That is as important as anything. And going in a group to see the doc together is great because everyone will pick up something different and different questions may come up. You may want to write a list of must answer questions so you get all the questions asked….it’s easy to get off track. And if you don’t understand what they tell you ask for it in plain English (docs throw medical terms around like crazy).
Good luck and keep us posted.
So sorry they were not able to do the resection. I know when my husband was scheduled for his resection they warned us up front that they would not know what they were getting into until they got in there. They attempted to do a Laprosopic check of the tumor first then would proceed only if they thought they could get it all….there was concern that his was wrapped around the artery and vein (he had hilar CC).
Ask lots of questions and read the surgical report (have someone interpret if needed). I know they can take quite a bit of the liver and it will regrow so ask, ask, ask and keep pushing for explanations and options.
Lainy – I would agree no more surgeries unless it was absolutely necessary, you have had more than any one person should have in a lifetime. And early Congrats on 5 years that is awesome. Hopefully the Remicaid will do it’s job and take care of it for you. Good luck and keep us updated.