1

(5 replies, posted in Members' Cafe)

http://s13.postimg.org/ak7r4mrib/20150627_085712.jpg


Hi all -
I just wanted to post a picture of Mark's final resting place. We scattered his ashes in the aspen grove pictured below. Where the bright green forms the point of a vee, he is just on the other side of the trees there. In the valley below is a large reservoir that we fished in a lot over the years. The clearing is an area where elk, deer, bears, cougars and many other critters can be found. He will be able to hunt forever. I felt a sense of peace with it and really feel that he is happy with my choice.

Thanks all,
KrisV

2

(2 replies, posted in General Discussion)

Hi all -
I just wanted to let you know what I have been up to. I am a part of these discussion boards and a couple of FB groups for cc. I noticed that the spouse of those who have passed seemed to struggle more in the groups with people still fighting. I was having trouble expressing my feeling because I didn't want to be Debbie Downer for those who are still fighting. I just left I was floundering with these groups. So I started a FB group for widows, widowers and people who have lost their significant others. It seems to have been a hit so far with 30+ people is just 24 hours.  I would like to invite anyone on here who has lost a spouse or significant other to join us. I would like to keep it to spouse and significant others because I feel that as spouse we go through our grief a little differently and have different issues to deal with. Here is the link:

https://www.facebook.com/groups/1647285 … ment_reply

Thanks,
KrisV

I just want to let all know that I started a new Facebook group for those of us who are Widows and WIdowers from this disease. I have been a part of several FB groups but really felt the need to start something just for those of us who lost spouses. So far it seems that it is hitting a need for many people. So if you feel the need, please join us and I provided the link.

https://www.facebook.com/groups/1647285 … ment_reply

KrisV

Lee -
I am with you. I really hope that it works for your husband. I know when they first did it for Mark it did help some. He had the option to has his left in and got home but he didn't want to. He hated it because it hurt so darn bad. Maybe he would have stayed longer if he had but he wouldn't have been happy about it. It is so hard. I have my fingers and everything crossed for the two of you.

KrisV

Diane -
You have to go where you are comfortable and that is the most important thing. I live halfway between Portland and Seattle and the last thing I wanted to do was drive either direction. We have a cancer center in our town but it's so small and I knew they wouldn't have a clue and certainly could not do my husband's surgery. We went to Seattle for treatment. That meant a 2-3 hour drive up there and what could stretch into a 4 hours drive home - so dependent on what traffic was like.
I did it for 2 years and for a 6 week period of time, it was daily M-F for his radiation. I would not change one moment of that either. Often times he slept but more often he was awake and we talked.....about everything and probably more that we had in the 11 years of marriage before that.
I wish you such good luck with your trial.

KrisV

Dear Diane -
Welcome to the best little family that no one wants to be a part of. Sounds like you have actually done so much of the hard work already. And great news that you are able to get into a trial. I know that you are good hands at Memorial-SloanKettering. I hear wonderful things about that center.

Good luck and keep us posted.

KrisV

Lee -
My husband's was only on the Left. The initially did a needle drainage of the effusion to look for cancer cells but found none. He did 10 days of IV antibiotics at home after that. He truly felt fine and other than some breathlessness especially at night. We went back a few days after the antibiotics were done and they found it had the effusion had returned. The next day they went in with a small video camera and biopsied the site which was now a mass then drained the effusion and the the pleuradesis which is the talc in the space to make the pleural stick to the lung. He had a chest tube in for 3 days then out it came. We went home 4 days after the surgery. He was on oxygen now though which was new for him. We did find out if was the return of the cc. And he did unfortunately pass away a few days later.
I will say that his was a very unusual case and VERY surprising to all of his docs. They all said it does not go where it did. My husband also had significant underlying lung issues from previous radiation to his chest as a teen. So there were a lot of other factors in this too.
Lee, please feel free to email me if you wish. I am more than will to help and guide. My email is;
dazoo3563@comcsat.net.

Hugs and Love to you both,
KrisV

Oh Lee, I am so sorry, I know exactly what you are going through, having done this exact same thing with my husband just two months ago. I wonder is it in his lungs or actually the the pleural lining around his lungs. My husband had it on his pleura after being told it never went there. I think it might be time for a frank discussion about what your husband wants out of life. Does he want to stay in the hospital or does he want to go home for care? Also talk about quality of life versus quantity of life. These are tough decisions to make and I wish you the best as this journey continues.
Please feel free to ask any questions.

Hugs,
KrisV

Lee -
So sorry to hear of the change in your husband. It's hard to deal with stuff like that. I wonder did they do general anesthesia for the placement. My husband just did a local and some pain meds for his placement. I know that plleural effusion can be a result of anesthesia. Sounds like docs have a good handle on it now.
Hugs,
KrisV

10

(6 replies, posted in Members' Cafe)

Cool, I love that Marion.

Dear Jason -
So sorry you, your mom and your family have to go through this. It is a very rough disease on everyone involved as many of us on here can attest to. Having a good doctor that is willing to explain things is imperative.
As far as bed side manners I have to answer for that. As a nurse I see doctors in an even worse light because there are many that will treat their patients fairly well but then treat their nurses like crap. I will not see a doctor that treats anyone that way. It does not take that much to just put the smile on at be gracious. I do it all the time when dealing with patients.
As for palliative care, I can answer questions that you might have. I have been a home health and hospice nurse for years so feel free to ask away. As for the nausea without a doubt treat it like pain and stay ahead of is so taking the medications regularly is optimal. Often constipation can happen with taking nausea meds and with narcotics so it is good to have a plan for that just in case. I usually recommend a combination of stool softener and senokot but talk to your doc they may have others they prefer.
Glad that she is home from the hospital. Home is where we do that best.

KrisV

Michelle -
Sounds like you guys have a plan. Mark was on blood thinners through about half of his 6 months of chemo due to his clot after surgery. We didn't have any issues other than he got nose bleeds off and on but they usually stopped without an issue.
Weight is always an issue. Mark was 245# when he had his surgery. He got down to about 190ish after surgery then leveled out finally at about 210# after just chemo. When he did the chemo (5FU) with the radiation he got down to 158# but like I said he had rare and severe reaction to the chemo....they told he could stop but he refused. We got him back up 210 after that. We did a lot of protein shakes. And you might out GNC or other health food store for flavored protein powders....we used several different flavors in his protein shakes.
KrisV

Andy -
A tough but wise choice at this time. Make sure hospice is aware from day 1 about his pain, make sure he does not down play it....and if he does try to talk to the hospice nurse one on one to explain the situation. If he had a port or a PICC line in then they can start Dilaudid IV and then he can get a small amount all the time and have a button to push when it gets worse....a PCA like in the hospital. You can try icing the area but I bet it is referred pain from his stomach.
Couple of things to remember....Oxycodone and Morphine come in several forms.....long acting given two or three times a day, short acting that work very quickly and liquids that can absorb in the mouth and work very fast. Do NOT worry about addiction. At this point that is the last worry. If a medical professional refuses narcotic medications due to the risk of addiction....find someone else. Also there are pain patched called Fentanyl which only need to be changed every 2-3 days. If he is in pain then he needs medicated.
The other thing is if hospice does not bring it up then please look at the Five Wishes which is a great way for the patient to talk about how they want end of life to be. I like it because it lets them make decisions. I will give you the link to one place to look at it.

https://www.agingwithdignity.org/five-wishes.php

Good luck and feel free to email me.

KrisV

14

(4 replies, posted in Members' Cafe)

I bet he started singing too. Going to be my first without Mark but the kids are getting together here and we are going to do burgers and stuff. I will concentrate on making my boys have a good day. Hugs and love to all.

KrisV

15

(6 replies, posted in Members' Cafe)

It is really cool. I am so glad that we have a place to do that. Do we know if this is going to end up being a permanent part of the site? I know that may have been answered but I missed it.

KrisV

Michelle -
Oh Gosh, congratulations to your mom for having a great surgery. The recovery was a little ugly but the clear margins and no nodes make it wonderful.
My husband had his surgery in June 2014 with clear margins the second time and 2 nodes positive. He too had a rough recovery. They told him 5-7 days in the hospital and he had 14 total...he couldn't move for three days due to pain in his shoulders then got a blood clot in his arm from the PICC line. He did chemo (gem/oxaliplatin) then did radiation with chemo (5FU). His theory was that he wanted every chance there was to beat this cancer.
What I can say is that when/if it comes back it is usually fairly aggressive and hard to manage after that. Whether then extra treatment helps I don't know but it's the best shot at beating it. I would look at your mom's age and general health. Do you think she could handle it? Everyone reacts differently to the chemo from really bad to walking through. My husband had very little problems with the Gem/Ox but the 5FU darned near killed him (he had severe and rare reactions to it).
It's a tough decision and one many people have had to make. Good luck and keep us posted.

KrisV

17

(7 replies, posted in In Remembrance)

Kerry -
I am so sorry for your loss. I am glad that it happened the way it did, for both him and you. Sounds likes you have a good handle on things. May I say that with grief, we all travel through it differently and I think your 33 wonderful years will help with that process. You and your family will be in my thoughts and prayers.

Hugs,
KrisV

Lee -
Great news. Just make sure he drinks gatorade or something similar to make up for the fluid loss and according to our Interventional Radiologist it should only be a liter to a liter and a half out put daily. Hope this helps his feel better. So glad things went well.

KrisV

Andy -
It is a very tough situation, especially when one family member is in denial. I have been a home health and hospice nurse for years. My suggestion is that you/your family talk with your mom and explain to her that hospice is meant to achieve two goals - keeping him out of the hospital (at home) and comfortable. Hospice changes the goals from a "cure" to keeping him comfortable so they just treat the symptoms that you see such as pain, high ammonia levels, etc. Also you may be able to talk to hospice about the transfusions.....often times they will not pay for them but they will not stop you if you want to get them on your own....such as having your insurance billed for it instead. A transfusion can be considered palliative (to alleviate symptoms) and if you push hard hospice may still pay for it. I would also talk about quality of life versus quantity of life.
I am sure it would be better for your dad.  We got hospice in for my husband but only three days before he passed. I wish we had been able to get them in sooner but he didn't get really sick until just a few days before he died. I always would opt for sooner rather than later. Hope this helps some. If you want to ask more questions please feel free too email me.    dazoo3563@comcast.net

KrisV

Good for you Gavin.  I used to bike 8 miles three days a week and walk 4 three days a week....of course that was before I married Mark and moved away from my gorgeous lake.....now I just have a highway to dodge cars on. The pilates does help with my back.

Lainy if you feel like cleaning you can come help away at my house. I am trying to get things rearranged to put new furniture in finally.

KrisV

Lee,
Keeping my fingers crossed for you and your husband. Hope that everything goes well.

KrisV

Donna -
I read where it says that it's a Klatskin tumor. That is what my husband had. It was mostly in the left  branch with some infiltration into the right plus it was in the lymph system with two nods positive and perineural infiltration (running along the nerves). He was able to have surgery....14 hours of surgery but he survived it. I would make sure that you have several surgical opinions since some surgeons are willing to do it when others aren't. And also remember that chemo can shrink things.
Other than that just keeping plugging away at it.

KrisV

23

(9 replies, posted in Introductions!)

Dear Jenny -
Welcome to the best little family that no one really wants to be a part of.  Sorry that you have to join us. You have however found a great resource to help you and your family.
So glad that is sounds like you are being very proactive. It also sounds like you have a good plan going.
It does seem that Gemcitabine and Cisplatin are the  drugs of first line. The platin drugs in general are the second drug. My husband did Oxaliplatin and I know others have done carboplatin. One thing to keep in mind is that while surgery may not be an option it very will could be later down the road. There are those on here who have been told that and ultimately been able to have surgery. Also there a several studies out there that you may look into.

http://cholangiocarcinoma.org/professio … al-trials/

Good luck and keep us posted.
KrisV

You are doing what I need to do. I need to quit eating junk....I am a stress eater....and start eating better. And I need to start walking again plus doing my pilates. I just need to set my mind to it but it's hard right now. Glad you are doing it. Maybe I will get motivated soon.

KrisV

Oh man, Gavin, are you telling me whiskey is not the answer? smile

Not that I would but I sure understand about reducing stress....learn to say NO. If you don't really want to do something it is okay to say NO. I had to learn that one. And you don't even have to justify it by saying you are too tired. Just say NO!

KrisV