1

(6 replies, posted in Introductions!)

Welcome to the family, FlowerLover. We are a great family but one not everyone wants to be a part of. Matt is correct in that the fluid in his abdomen is called ascites and it is a sign that the liver is not working properly. The liver starts to get a hard and not process well so fluid/blood back up and then the clear part of the fluid in the blood leaks out into the abdomen. Normally the fluid is not infectious although once in awhile it will get that way from something else. Draining it is the only fix. They can put a permanent drain in and it can then be drained at home. As far as what he should eat, increasing his protein intake will help drawn some of the the fluid back into his blood.

Also watch closely for changes in his behavior. The liver cleans ammonia out of the body and if its not working properly then the ammonia builds up. It can cause changes in the brain which would manifest as a significant behavior changes often paranoid, call be hallucinating, agitated or some people get real lethargic and sleep a lot. If these start happening then I would get him to the ER.

One thing your husband could do is talk to his father about what his goals in life are now. Does he want to have everything do to prolong his life or is he just looking to love as comfortably as possible? I would recruit any other family members that are a part of this and have a family discussion so every one hears the same thing. If he wanting to fight then definitely a second or even third opinion. However if he wants to just be at home and be comfortable then it might be time to talk about hospice. They can keep him at home and comfortable. The sooner you can start that the better they can help.

As for mowing the lawn and overdoing it....that's a man thing. My husband was still trying to do things he shouldn't be doing even in the week before he passed. Your FIL is probably frustrated adn angry at the whole process.....and being a man makes it worse. He wants to stay busy and keep his normal life. I would say let him do it as long as he can.....yes, he is hurting and yes, he probably should let someone else do it but he still can. In the long run it probably won't matter much. You might offer to make some easy to fix meals for in the freezer. Then just wait for when they need help and rather than offer to help just do it....or hire a lawn service for them.

Sorry things are so rough. My husband battled this for two years and there were times I shook my head and grimaced as he tried to do something.....his fingers and hands hurt so bad when he got cold but he was still hanging Christmas lights.

Good luck and keep us posted.

KrisV

Erashid -
My husband had the same surgery. It took him probably 6 months or so to get back to normal. They do a lot of stuff in the belly when they do the surgery so it take a while for everything to become normal again.
The pain in the right should is the same type of pain that can be seen from gall bladder issues. I would suggest limiting fat in her diet and definitely talk about some sort of digestive enzyme to help break things down better. Also something like Gas-X....a simethicone product.....will help break up the gas bubbles and that may help with the pain. You may need to ask at the pharmacy to help find it but that might help.
As for the incision, scar tissue will often itch and can be very dry for a long time after surgery. I would suggest washing with soap and a very mild soap then apply a good moisturizing lotion to the area a couple times a day....something that might have Vitamin E in it.
Hope this helps and keep us posted.

KrisV

3

(37 replies, posted in General Discussion)

Fred -
I know people say you can't live on nutritional shakes but you can. I have had many many people that live on those alone. You can look for shakes that are more calorie dense....Nestle believe it or not is one of the biggest suppliers of these supplements. If he is having difficulty with his stomach getting full and hurting you may want to talk carefully about any kind of feeding tube.....they can sometimes make that worse....ask about a J-tube which is a little further down the gut. Nutritional IV is probably a better choice for short-term. These are just suggestions of course but be sure and ask a lot of questions about both procedures.....risks, benefits of each....and my favorite question...If it was your family which would you do?

KrisV

4

(12 replies, posted in Members' Cafe)

I went into nursing believing pure science and that nothing like this was real.....I know better after 20 years of nursing. I fully believe there is something in us....call it a soul or whatever....and when people are gone so is this spark/soul. I can walk in a room and know someone is gone without even touching them. Then all the stories I have heard and witnessed, not including Mark, many may stories. I have a total belief now. And add Mark into it now. I know he would never scare me....he might mess around with me some but never scare me. He might scare the dog a little at times. She is a little spooky thought being a dog. The cats are another story. I have seen them hiss at nothing more than once recently. I don't think they are thrilled. I makes me happy that he is staying close.
I am also learning so much about living alone now.....first off if you run out of toilet paper then it's your fault and you are stuck getting a new roll out of the spare room. You have no one to blame but yourself when you forget stuff. Oh this list goes on. This is the first time I have lived alone since I was 20 and the kids were born.

KrisV

5

(12 replies, posted in Members' Cafe)

Okay so I thought Mark was gone. I hadn't heard anything from him  since the two nights before his Celebration of Life and Wake. I thought maybe it had to do with certain plans I had made.....let's just say I am doing things my way. Anyway last night he was very, very active. I thought I was crazy at first but I know I heard him talking not really hear the words but like he was trying to talk to me from the living room. The dog heard it too because her ears perked up she she jumped off the bed just like she would if he was home. She was very disappointed when she came back and couldn't find him. It should have scared me a little I guess but instead I felt comforted. Then I got up this morning and the TV was not on but when I turned it on it was on the Sportsman/Outdoor channel that he loved. This is something I would NEVER watch without him. One of his favorite shows was on. So I left it on there while I took I shower. I guess he wanted to watch his show. Too strange.

Kris.

6

(37 replies, posted in General Discussion)

Fred -
Unfortunately infections can be a part of the process. My husband had three hospitalizations for sepsis (bacteria in his blood) after his resection. Once after his port was placed for chemo and then again after his first two rounds of chemo. There were two more times after that where I was able to keep him our of the hospital by starting antibiotics at home as soon as I notices symptoms. They never really figured out where it was coming from and everyone had their own ideas. The GI doc said it was from narrowing where the liver and the small intestine come together. He thought there was too much swelling which caused the bile to back up. He started Ursodial 300 mg twice daily for that....never were sure if it worked or not since he had two more episodes after that. They were sure it was his port finally so they pulled his port out and he did the bulk of his chemo without a port or PICC line.

As far as appetite goes, Mark's was always terrible when he was sick with the sepsis. He would just pick at his food. We tried to stay with a more soft even liquid diet. He would drink a lot of protein shakes. Also sometimes food that is too warm or too cold can irritate the stomach so try stuff that is kind of room temp or lukewarm. Also small high protein meals.....we did the protein shakes with frozen fruit, a couple scoops of ice cream, protein powder, yogurt and a little milk. The other thing you can do is make jello and instead of adding cold water, add something like Ensure clear or another clear protein drink (IsoSource is another one). It adds quite a bit of protein and it's also considered a fluid. Fluids are the most important.
Good luck and keep us posted.

KrisV

Lee -
I was going to say it might be the starts of an infectious process of some sort. Then when I saw the fever and chills part I knew you had done the right thing. He may have a blockage in one of the stents or just having the stents. The IV antibiotics are the best. My husband was hospitalized three times for blood infections and we were able to keep him out twice more when the infectious disease doc gave us a script for antibiotics. Good luck and keep us posted.

KrisV

Dearest Maggie -
Welcome to the best family and really none of us want to be a part of it. Six days instead of six months is terrible to have to deal with something like this. I just lost my husband on April 30th to this disease. He had been diagnosed in May of 2013 and had surgery in June. Chemo then chemoradiation and he had been cancer free for two months shy of 2 years when suddenly it returned. It was found on a CT scan take for a totally different reason. Initially they thought it was something else. Then he had a biopsy on April 21st when we found for sure it was a metastatic cancer. I finally got someone to read the pathology report on the 27th and found it was the cc back. He passed on the 30th.
I am so very thankful that he went as quick as he did rather than suffered through so much pain and indignity. It does leave you wondering and saying "what if" for a long time afterwards. In encourage you and your family to still get in contact with your local hospice, even though he never utilized their services they will have support groups and such as needed.
And you dad can still help, make sure you complete the Patient Registry for him and you can even look into the Mayo study as they are looking for people who have the cc but also for people who do NOT. My husband's entire family signed up for it and I made sure that the biopsy tissue from the last round was sent to the study.
We are always here.

Love and Hugs,
KrisV

9

(10 replies, posted in General Discussion)

Carol -
Welcome to the best little family no one wants to be a part of. My husband was stage 3b when diagnosed two years ago. He had been having what I thought were gallbladder attacks off and on for the five years prior to his diagnosis......we found out that it was probably the cancer all along since his gallbladder was fine.
It is a hard road and it it good that your mum has help coming in. I would also suggest that you make sure you are taking care of yourself. Sometimes we forget to do that.
I know others will chime in too. And I know that we have at least a couple members who are close by to you who have been down this same road.

Love, KrisV

I doubt he was Marion. He would just groan and roll his eyes for the most part. It's been nice and heart breaking at the same time to go through all the pics I have. I put a power point together for his Celebration of Life and every pic brought out so many memories. Then his sister scanned in so many of the the pics from when he was a kid and there were so many I had never seen. And being they are scanned I can keep them.

KrisV

Also I really love this thread. I love see the faces of everyone.

http://s24.postimg.org/xykytws29/Mark_Home.jpg

This was the last pic taken of the two of us. He looks like hell but he was still trying to smile....and somewhere in there I am sure he was pissed I was still taking pics. Oh well.


http://s23.postimg.org/saotkycw7/Mark_Raylan.jpg

And this about 2 1/2 weeks before he passed with the Little Man Raylan. It's hard to believe that in less than three weeks after this pic he would be gone. He didn't look sick until close to the end.

KrisV

12

(12 replies, posted in Members' Cafe)

Lainy -
I don't think I got the signs that loves ones are still near....go ahead and send it to me. I know I asked for you 10 signs that the end is near....didn't think I would need it at any time soon but we know how life is. I am glad you are doing good....you have been in my thoughts and prayers these last weeks wtih your surgery and recovery. So glad things are going well.

Love,
KrisV

13

(12 replies, posted in Members' Cafe)

I am sure he was celebrating with us yesterday. We had his Celebration of Life which was nice but disappointing....it was truly all about his sister and his mother.....to the point where people commented on it. I did let them plan it but I trusted them to include everyone and there was not one mention of his current family.....any of the kids or myself. But not totally unexpected.
But afterwards we met at the house and had a good old Irish wake.....I got two quarter kegs of beer but people brought their own. We actually emptied one of the kegs....the lighter beer that everyone really like and we drank a good chunk of the Imperial Red which was his favorite. That Wake was about him. We told stories and laughed about Markisms.....all those things that he used to do....his sense of humor, his laugh and his smile. I think the kids carried it on until early this morning. That is what he would want. I am sure there are a lot of hung over people this morning.....Daisy our dog hasn't moved yet. It was a good night.
And while the remote didn't move over the weekend. I fully expect it to travel this week smile

KrisV

14

(12 replies, posted in Members' Cafe)

I think of Lainy and her pennies from Teddy. I always hoped that I would know if Mark was still trying to keep me company......And I will have to say that I do know.
He's messing with me and it's pretty funny. The last two mornings I have gotten up and could not find the TV remote....Mark was always losing and I would tell him if he put it in the same place he could find it. Well every night I got to bed a lay the remote on the arm of the chair. Both mornings I have gotten up and the remote has moved to the couch where i used to sit.....The dog has never touched it and I am the only one home. Then today I was watching TV....Bones on TV and decided to go out and plant some flowers. I came back in and turned the TV on and it was now on Nickelodeon watching The Fairly Oddparents. Totally strange.
So instead of pennies from heaven I am going to get the TV messed with which is appropriates since the TV and all the electronics were really his to deal with. It sure made me smile at a time when I really needed.

KrisV

Thank you Catherine. I did get your email but things have just been too crazy lately....hmmm I wonder why. And I have had more than one post interrupted by a kitty. I have three that are all my babies. And yours is beautiful too.

KrisV

16

(10 replies, posted in Members' Cafe)

Well said Duke. Made me tear up a little and I have been trying so hard to hold it in lately. I think you said something all of us would like to say but can't put it in words the way you did.

I have learned to quick saying someday and thinking about the future, rather someday is now.....all those things we put off we are doing now.

Again well said.

KrisV

http://s7.postimg.org/5c9rgabx3/IMG_20140305_121525_156.jpg


This is Mark on his last day of chemo. January 2013. Probably when he looked the best.

Two year survivor, diagnosed stage 3b in May 2013 passed away April 2015.

KrisV

Unfortunately it can happen....and as Marion said sometimes with little or no warning. My husband was hospitalized three times.....twice three days after chemo and once three days after his port was placed. Each time his heart rate would go up, he would run a temp and you could see him kind of fold in on himself. Each time massive antibiotics got. My guess (and just a guess but as a nurse and having been through this too) is that when they were doing the intervention radiology part of things to fix the bile leak they introduced bacteria to her blood and that is what caused the sepsis (Sepsis is bacteria in the blood). We never really found a definitive cause for my husband's they wanted to blame it on scar tissue in his liver but that was never found for sure. There was probably a who cascade of things that contributed to it. When a person is that sick the liver (and the kidneys too) have to work harder so the stress of that and the recent surgery may have caused the elevated ammonia level.

Make sure she has the biliary emergency card. She can be transferred to another hospital if needed to give her more advanced care. My husband usually started out in our local hospital but he was always transferred to the cancer center right away.....at my insistence.

KrisV

19

(10 replies, posted in In Remembrance)

Thank you everyone for your kind thoughts and words. It has been very helpful to know both of us were loved by so many.
Here is the link to the obituary from the funeral home. The Celebration of Life will be Saturday May 9th at 3 pm. I know most you cannot make it but if you think about it raise a glass at 3pm to Mark. He lived a good dark beer but Gatorade or water will do.

http://www.cattermolefh.com/notices/Mark-Volland


Love, KrisV

20

(10 replies, posted in In Remembrance)

Dear everyone -

I know many of you already know due to Facebook but Mark did lose his battle with cc on Thursday at 1230. He died in my arms (cheesy I know but I wouldn't have it any other way). He died on his terms in his time.

We did find out on Monday the 27th that is was metastatic cholangiocarcinoma to the pleural space between the lungs at the pleura so not really lung cancer. It was a devastating diagnosis since we knew there was really nothing we could do. Our Onc has been at Onc for almost 40 years and he had NEVER seen it there.

We actually knew on the 21st that he was not going to make it when we found there was cancer in the pleural space and he just did not have the energy to fight any more. It was all happenstance it was found when you think he had that GI bleed on March 29th and they accidentally found the mass on the pleura on the second of April. It just seemed he never bounced back from that.

He was a great man and I will miss his greatly. He touched so many lives, in so many ways. I guess it was just meant to be that Heaven would gain an angel a lot sooner than we had planned. I know he is watching over me and everyone else....although not too much attention because he is up there with his hunting partners chasing down that monster Elk and eating Elk Camp food with no one to say anything about his questionable food choices.

We are having a Celebration of Life for him on May 9th at 3pm. I know most of you are too far awa to come but.....if you would raise a glass to him I would greatly appreciate it. He enjoyed a good dark beer but lately a Gatorade would do. I will post a link to his obituary when it comes.

Thank you all for your support and love. I have never felt so much from so many people that I have never actually met it person.....and for many of you.....it will happen so that we will meet. I plan on taking a few weeks after a couple of weeks to get things taken care of and then I will be off with DOG as my co-pilot we may stop and visit with many of you.



http://s23.postimg.org/8wubtipbr/Mark1.jpg


And this is how I want to remember him smiling at himself. This was taken in 2012 before diagnosis.

Love KrisV

21

(14 replies, posted in General Discussion)

Thanks all for the love and support. We are home now....tired but here. Mark came home on oxygen which has helped a lot with how he feels. He pretty wiped out as can be expected but happy to be here. Our kids did a great job of pitching in and making sure we came home to a clean house with minimal stuff to do. I will have to do tomorrow and pick up a few things.....grab bars for the shower and tub bench and some other odds and ends but it feels so good to be home.

I did get a nice long talk with the surgeon today with no one else around. Wonderful man and I honestly think he is as upset about the diagnosis as I am. I asked him point blank exactly what they found during the surgery. He says he found a 6 cm by 7 cm by 1.2 cm tumor with multiple smaller satellite nodules that look to be the same. They took a large section and under frozen slide in the OR there was no doubt that it was cancerous and adenocarcinoma which is the same classification of cancer as his cc. So as Dr Hubka said it stand to reason that it is mets from teh cc. He must have apologized 20 times about having to tell me the bad news. The pleuradesis did work around the left lung except in the area where the tumors are....they are unfortunately going to continue to leak some fluid because of what they are.

Spoke with the onc too. He is still wanting to see final pathology and then make a plan. He said that it will most likely be palliative at this point which I get. Because there are less than 2000 cases a year of pleural cancer whether mets or primary there was not a lot to go on for treatment. They would probably look at chemo and most likely the Gemcitabine again to slow the growth. We did talk about genetic testing which he says he would recommend IF they got a big enough tissue sample so we'll have to see what pathology says.

We got more years than we had. Mark and I were talking earlier this week and we came to the conclusion he was supposed to die when he was 14 with the Hodgkins but he beat it so these last forty years have been his bonus time and these last two years were his encore. I think we are both a peace now with what is happening (don't like it but accepting)

Love you all and thanks for the support.
KrisV

22

(14 replies, posted in General Discussion)

Hi all,
Well I guess I lied. They did the biopsy surgery and the initial pathology came back as stage 4 metastatic adenocarcinoma.....mostly like mets from tuye bile duct cancer. Good God....if someone can do it then it will be Mark. We will wait for final pathology before we get a plan so probably next week. I am guessing chemosince he cannot really do anymore radiation and it is such a weird spot.

Okay and I did more reading and guess what I found.....evidence that it rarely does metastasize to the pleura.... Usually found after death with autopsy....in 2008 Japanese researchers found it in 5 patients after death.....and apparently at the same times as diagnosis of the cc. Only in my life. Here is the link to that study. At least it gave me something to look at even of it wasn't the best of news.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2710741/


They were able to drain a liter of fluid off his lung and they were able to do the pleuradesis with the talcnso hopefully it won't come back. He has a chest tube in right now and is less than happy about that.....so sore.

So I guess we have now seen mets to the pleura with malignant pleural effusion. Still not too old to learn stuff.

KrisV

23

(14 replies, posted in General Discussion)

We have the docs stumped again which is not always a good thing. Out onc doesn't have a clue and is very open about saying that right now. They do not believe it is a return of the CC but if it is anything then it will be a new cancer. I did a bunch of reading (not always a good thing). There are a lot of things it could be and we will have to wait for the biopsy report. so glad they are just going to go in and see what it is rather then just keep hoping it shows up on something. And I have to give credit to a bunch of docs who moved fast. Onc doesn't think if can be anything too bad since he had scans 6 weeks ago that were clear. They are really hoping that is is leftovers from the pneumonia. The are going to go in and drain the fluid and they do a pleuradesis which is to put talc in between the ling and the pleural so the pleural adheres to the lung and he won't continue to have the effusion.

Kind of a rattling post since I am so tired, will keep all posted.

KrisV

24

(21 replies, posted in Members' Cafe)

Positive thoughts your way from our neck of the woods. I know things will go well for you and you will feel so much better.

KrisV

25

(19 replies, posted in Introductions!)

Liz -
Great news. We all love the word resection and now you are headed that way. So happy for you. Hopefully all goes well with everything else.

KrisV