kvolland
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Thanks all, I think it was just me. When I quit trying to put a pic that had me or the two of us in it….it wouldn’t work. So I guess someone was trying to tell me it had to be just Mark because that was the only one that worked. Too funny.
KrisV
WooHoo! I finally got an avatar loaded. Picture of my husband…..he probably will hate it if he ever sees it but I don’t care. It’s one of his looks that I seem to get when I am off on some tangent he doesn’t get…..happens a lot.
This was one was just before he got sick and lost so much weight. Just had to be persistent.KrisV
Bob and Nancy –
So sorry for the loss of Jeff. I am sure that his time on this earth was made even more wonderful by having such loving parents. We should all be so blessed.KrisV
Hercules –
I love to hear that. My husband is only 5 months into this roller coaster ride. I am so glad to know that there are those that are living with this disease..KrisV
I do think that some of those flavor drops have the electrolytes….my youngest is really into nutrition and stuff and works out a lot. He uses MIO Fit I think and I am pretty sure it has all the right stuff. I also know that Powerade comes in powders too.
We have been that infection route….it is awful. It’s like constantly waiting for something to go wrong. Your husband sounds more like me….my husband would ignore the temps if I would let him. One thing I did learn is that the pain meds (ie the Tylenol) will only mask that infection symptoms for awhile then if won’t matter, the temp will be there. The other thing is ask the doc for something like just plain Oxycodone which doesn’t have the Tylenol in it which is what can mask the symptoms…..it’s what we did. Then he just takes Tylenol when he needs it. I wish we could use Advil for his general aches and pain plus temp but my husband had a blood clot after surgery so is on blood thinners.
So far we have been out of the hospital since September 6th….wow a whole month now that I look at it. That’s the longest stretch for us since the middle of May.
Kris
Hang in there Tanya – this is a roller coaster ride of a disease and I have been through so much of the same stuff. My husband had his drain (no stents though) placed the end of May and had it through July 3rd. The first few days were rough….by biggest suggestion for that is have him drink lots of Gatorade….we were told to drink as much Gatorade as what comes out the drain. My husband didn’t do such a good job of it and we had some problems with dehydration…..on a side note our doctor said that they used to have people drink the bile to keep the electrolytes in balance….I really hope he was joking. I have a strong stomach and that grossed be out.
Men really have a hard time being patients for the most part. They feel like they should be able to take care of you and everything else. They also want to fix everything and that just can’t be done right now. All I can suggest in maybe have him take a pain pill an little bit before you work on the drains as they may help him relax some and not be so worried about what you are doing or maybe even something for anxiety. I know my husband eventually said there was some pain because of where they were placed in him and once he started taking some pain medications it helped’
Just take one day at a time and celebrate any little positive progress…..it always cause for celebration no matter how small. We got supper excited this week about 2 rounds of chemo and no hospitalizations….the first two rounds landed him in the hospital with infections.
KrisV
You know Lainy, grief is so different for everyone….my step-mom just moved on….us kids were still in shock at the sudden loss of my dad and she was getting rid of all his stuff….literally the day after his funeral. We were no where near ready for that but it was her way to deal. Then a really good friend of my husband’s died from stage 4 esophageal cancer two years ago. His wife just now started moving on….his coat was still hanging on the door where he put the last time he came home from work and the grandkids were still tripping over his shoes.
We all move through it differently and maybe now you ready for this portion of it. You are stronger and better able to deal with it.
You have helped so many of us through our grief that now it your time. Take time to take care of yourself….take a break and deal with your stuff….we will still be here.Also congrats on 5 years. That is really great!
KrisV
Lainy – It’s funny that you talk about driving and singing….I do that a lot. I am a terrible singer expect when it’s in the car….my family always knows when I had a bad day when the can hear the music when I pull in the driveway. They used to run and hide.
Marion – It really is funny about mowing the lawn….it’s not like Mark ever mowed it except when we had a rider….we always had the kids do it before. We have a big yard about 1/2 an acre and a push mower. There are so many other things to get angry about….all those projects like the leaky bath tub I should get upset about but I just finish them and move on….but the lawn is sure to drive me to tears every time. I finally told him the other day when he caught me crying after I mowed it. I think it made him really think about how much I have taken on. I think he is trying harder to do the things he can now.
This was a good one. Anger is not only for the person going through the cancer but the caregivers and loved ones too. I am stuck at the anger point right now…..and what makes me the angriest is mowing the stupid yard…silly thing to get so angry about but there it is. I see a gal every week (or as close as possible) as she has been a tremendous help.
It was good to know that it’s okay and part of the whole process.KrisV
Tanya –
I am a nurse and went into this kind of blind. I had never even heard of CC before this and I deal with Home Health and Hospice. I had no idea how lucky we were that we had a resection and that it all happened to fast. He started have gallbladder symptoms April 25th and it was diagnosed on May 14th on a CT scan that was for something else. Then he jaundiced a few days later. His too was mostly on the left and only involved a small portion of the portal vein which they were able to resect out. The left side of his liver was atrophied too….doc laughed and said he practically used a chisel to get it out. Of course, my husband had Hodgkin’s lymphoma as a teen so some of the problems and lengthy surgery were due to previous radiation.
And keep hope, resection might not be an option right now but we never know what they future will hold.
I am glad that you have a good team. Again we just kind of lucked into the group that we have but I have the best confidence in them….so much that has happened for us has been luck….the right kind.KrisV
Tanya –
Let me be the first to welcome you to our wonderful little family here….no one really WANTS to be a part of it but we are anyway. My spouse just turned 50 in August and was diagnosed in May with hilar CC (Klatskin’s tumor). Not sure how big his was but he ended up having a resection and lost 60% of his liver which has now regrown. The left lobe of his liver had essentially died due to the tumor blocking the bile duct. He had a drain placed prior to surgery which landed him in the hospital just prior to surgery but it cleared well with antibiotics. 14 hours or surgery and 12 days in the hospital later, he came home.
He is now on chemo of Gemcitabine and Oxaliplatin every two weeks and has had 4 rounds so far and is tolerating it well other than cold sensitivity. He has been hospitalized three times since the surgery for blood infections but we think (hope -finger crossed) that we are done with that.
There is no doubt that this is a roller coaster ride of ups and downs, twists and turns and you never know where you will end up.
My best advice is to make sure that the oncologist and surgical (of that becomes an option) team have treated and have a good understanding of the disease.
Good luck and keep us posted. Remember we are always here to answer those questions. Most of us has been there, done that.KrisV
I have had troubles too. I keep working at it until I get frustrated then stop for awhile….I am sure it will work after awhile.
I would really like to see the faces of those who are surviving this terrible disease…..it gives hope to see the faces and how long they have lived with it.
KrisV
Hello Danna –
My husband was diagnosed in May and he too had a resection and we are now on our 4th round of chemo. Every dose of chemo seems to affect him differently….some times he’s fine for two weeks and like today, he had side effects from the moment they start the infusion…..it may just be this round or it could be something physically wrong….your red blood cells may be too low which will give you a real lack of energy with the anemia. You may need to talk to your ONC and let him know how you feel, he may be able to give you something to assist with this and just getting up and moving around will help.
Hang in there. We are all here for you.KrisV
Lainy –
Just being here and listening to me is more than enough. Even though Teddy and Mark aren’t going through exactly the same thing, you have been in the same boat I am in now. That’s better than about anything else I can think of.
Everybody has been so supportive.
KrisV
Well, it was an interesting and long day.
GI doc really listened to us and our concerns today which was so much better than the last who just came in and said this is what we are going to do then got upset when we just didn’t jump on board.
He would like to do the ERCP but is willing to wait and see if there are any more infections. He says that now because multiple bile ducts come out of the liver into the small intestine that only one of them may actually be narrowed….he’s even pretty sure he knows which one based on some dilation they are seeing on the MRCP. That explains why the liver functions are fluctuating some (they are mostly normal but when he gets an infection they go up some). He thinks but doesn’t promise that they could go in and just use a balloon to open the narrowing up without putting a stent in…..stent would be the last resort since he is such a high risk for infection. Of course the possible side effects would be pushing bacteria into his blood stream when the inject the dye…..hmm sounds like something that would happen to us.
Felt pretty good about it and understand better why it may really be needed and why we would risk increased infection to do this. He did say that they might not even be able to get to the liver since he has had the previous radiation and his guts were such a mess with surgery. This is a really young doc too. He really looks like he’s only about 16….not sure he’s even shaving yet but he answered all our questions and spent the time with us we needed.
Right now it’s watch and wait. Last dose of antibiotics was today and chemo next Friday so if we have an infection it will the end of the month.
So all in all I felt pretty good about it.
Back to work again Monday for both of us. And the youngest son is all settled in at college. WooHoo!
Thanks all for the support.
KrisV
