kvolland
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Catherine –
I would still think a second opinion would be warranted and it does not mean you are unhappy with your current team, just exploring all the options. I know that some doctors are more willing to take risks that others. Or have different techniques to do surgery than others. And the nice things about where you live is that you have many, many choice of where to go.We were very, very lucky that when we were referred to Seattle for my husband’s surgery, we got the top liver surgeon in our area. He trained at Memorial Sloan Kettering and there was no doubt that he was going to do the surgery. We were told the same thing though that he could die on the table and that they could open him up and find it spread too bad. 14 hours later he was out of surgery tumor removed.
But, no matter how well I liked our entire team and trusted them implicitly I would have sough 2nd and 3rd opinions if necessary.
Of course, it is always your choice and your mother’s choice.
KrisV
Catherine –
Yes, it should grow back. It may take awhile and stress may cause it to fall out or break off for a little longer. I am not even the one who had treatment and my hair is a mess. I go in tomorrow to get it hacked off so the short broke off stuff doesn’t show anymore. I would guess about half of mine is broke off now and even our ONC says its stress.When it grows back do not be surprised if it grows in different. She may be missing any gray hair that she had. It could be curly, straighter or even a slightly different color. We had a friend that all of her dark straight blonde hair fall out. It came in almost black and curly for quite awhile. Think of it as a bonus when it’s over.
KrisV
Dearest Catherine-
Welcome to the best family ever. Sorry you had to join us but you will not find a better support group for what is going on in your life and hers.First off don’t worry about years, survival rates or any of that. Those types of statistics are most always based on the past and we are moving into the future. And none of us are born with expiration dates. There will be those that will pop in who have been living with this for years and it is treated more as a chronic disease.
It does sound like things have been going fairly well and you have definitely headed in right direction with it.
A couple of questions: Where is your mother getting treatment and have you sought a second opinion, especially for the surgery?
Best wishes,
KrisVMark actually went before the Virginia Mason Liver Tumor Board…..it was 15 docs from all disciplines and they looked at it all and came up with a treatment plan. (Liver Board encompasses liver, gallbladder, bile ducts and pancreas) We didn’t meet with them although we could have if we wanted to. When I requested his Medical Record I got to read what they had said which was exactly what the surgeon and the ONC told us. It was just that one Gastro who decided that he would tell us what to do with his bad bedside manner. This was well after surgery and was one of the times he ended up in the hospital for the sepsis. I see why they wanted to do the ERCP and the stent BUT he has not had an infection since September and the narrowing of the bile ducts that they were worried about is gone. I understand reading the CT scan well enough to see the difference. So we made the right choice…..wait and see since it was not critical and one less procedure to go through.
We almost need a cancer navigator for people who have this…someone who understands the disease well enough to help guide people to the right questions and treatments. I know the American Cancer Society navigator came to see us but she didn’t have a clue how to help us.
KrisV
Stella –
My suspicion (and I am NOT a doctor) is that a lot of his symptoms go back to his liver not working real well all the time. The jaundice is somewhat proof of that as the elevated bilirubin causes jaundice and the elevated bilirubin often comes from narrowing of the bile ducts. If he is itching then I would try some Benadryl either oral or cream for this. Sarna cream if available seems to help a lot of people. The swelling in his legs is probably related to the same thing. His belly may even be a little swollen too. I would talk to the doctor about this because there are medications that he can take to help with this. If he does not already have stents, he made some if they can get them in.
Constipation is probably related to the pain meds but don’t stop the pain meds, rather treat the constipation. Make sure he is drinking plenty of fluids and then there are plenty of things over the counter that can help with this. Of course the old stand by is prune juice and then you can make it a brown cow by adding some Milk of Magnesia. Also stool softeners such as Docusate and something like Senokot should help. Ask a pharmacist about them but they are over the counter.
Again the swallowing may be related to the liver not working well which can make the veins around the esophagus get a little enlarged. To help with medications ask the pharmacist if they can be crushed and if not is there a liquid alternative. Also you can put one pill at a time in something like applesauce or pudding which will help it go down easier. Also when he is eating make sure that his foods are soft enough not to get stuck. Small bites, chewed well and make sure meats are very small or even ground. Crunchy veggies/fruits such as apples, carrots, etc should be cooked to make them soft.
Hope that helps some.
KrisV
Well that particular doc had some really bad bedside manners and he just didn’t approach it right. He came in and basically told us this was how it was going to be then got upset when we started asking questions about the why….goes back to wanting to do ERCP and stent placement which we didn’t want to do. He got Mark so upset in the hospital that his pulse spiked so high that the nurses came running in worried that he was having cardiac problems. It was kind of funny in retrospect. It was also funny reading his visit note for this.
I also called a couple of time outs during hospital stays for Mark when things got confusing. We had a lot of issues when he had the blood clot and everyone had a differernt plan. I said no more anything – no blood tests, no medications, nothing until they had a plan. Took them about 15 minutes for everyone to get on the same page.
KrisV
Nan –
You are probably right about your husband not wanting to know how bad it is. My husband was the same way when first diagnosed….he wouldn’t even call it cancer….it was a tumor and that was it. He got mad if anyone mentioned it was cancer. And he wouldn’t even think or talk negative.One thing I will suggest is that you talk to the doctor about changing the Percocet to plain oxycodone (short-acting version since he is already taking the long acting). The Percocet has Tylenol in it which can be hard on the liver especially when taken routinely for a long time. Plain oxycodone will cover the pain just as well and eliminate something that may be stressing the liver.
Other than that, make sure he’s drinking plenty of fluids. Hydration is important.
KrisV
Dear Classic –
Welcome to our little family. Sorry you had to join us.I can’t really think of anything else to add to what has already been said. The only thing I might add would be liquid oral Benadryl, it does work a little faster than the pills and like the hydroxyzine it will make your father a little sleepy. Other that I think it was covered.
Keep us posted and we will help anyway we can.
KrisV
Oh my absolute favorite is – “God doesn’t give you more that you can handle, so you will be fine.” Really, cause I think He messed up….I can’t handle this.
And then everyone has to share their horror story….like you said “My mom, My uncle or whoever had it and then proceeded to tell you how awful their journey was. I really want the positive. Like childbirth horror stories only someone dies at the end.
“All you have to do to beat it is”…..and then it’s whatever thing Dr. Oz mentioned on his last show. I’ve heard cinnamon, aloe vera juice, Goji berries, and some other things that make me cringe.
I get that people sometimes don’t know what to say and get nervous so say the first thing that pops out but some of these were from people who know better. I try to give them the benefit of the doubt.
I have to say that the one that handles it the best is my son who had the thyroid cancer. He has a huge incision that runs across the base of his neck that truly looks like someone tried to cut his head off. Every time some asks a “Dumb” question he gives them a totally off the wall answer….totally unbelievable answer….like he got it fighting in Iraq or a bar fight in Barbados or my personal favorite was he pissed his mom off. People’s jaws drop and they aren’t really sure he is joking or not. He’s a good sport.
KrisV
You absolutely have the right to fire any medical professional, especially one that functions that way. As a healthcare provider I would be embarrassed to do even one of those things mentioned. And an injection in the BATHROOM, absolutely NOT, ever, ever. At that point I would have made a scene…..of course being a healthcare professional makes me a bigger pain….as some doctors at the hospital.
There is no excuse for poor bedside manner either. I have called doc’s on it before….there is a gastroenterologist at Virginia Mason that never wants to see me or my husband again.
UGH!
KrisV
I liked it a long time ago…..I think before I even made my first post on here. I caught it in the very beginning what i was just trying to figure out what in the heck was going on.
Thank, KrisV
Wonderful, Marion.
No matter what age you are, at least the first two should be done so that your wishes are followed. There is also a booklet called “Five Wishes. ” It has the Power of Attorney and Living Will paperwork in it. It also has questions about how you want your end of life to be from pain management to how you want your family involved. It’s a really good booklet. It is accepted and recognized in 42 states now.
Here is the link to the website about it:
http://www.agingwithdignity.org/five-wishes.phpIf you wish to get it for free look on your states website or contact your local hospice. Our oncologist’s office has it too.
Here is a link to look at a sample of it.
http://www.agingwithdignity.org/forms/5wishes.pdfKrisV
I changed my profile pic to the green ribbon for the month (well it’s purple today). Also started doing a daily FB post that gives some of the facts about CC along with bits of Mark’s story here and there. I think some of my friends might get a little tired of it but I figure if even one person learns about it early enough to catch it early then I have won.
For anyone who’s interested here is my FB page and you should be able to see what I have done.
https://www.facebook.com/kris.volland
KrisV
Oh 100% tired of people jumping to conclusions. I am really amazed at what people will say. I understand that sometimes it’s hard to know what to say but I have had people ask how long he has to live and tell me I in denial about his drinking among some of the better ones I have heard.
My favorite is people (those that know I am dealing with Mark’s cancer and my son’s cancer at the same time) who ask me how I am doing or how can I stay so strong. I know they mean well but how do you really think I am doing….really. It’s terrible, I am stressed and I don’t sleep. I stay strong because I don’t have a choice. I have to put one foot in front of the other.
I am going to write a book. “Things never to say to people battling health issues.” Humorous but true.
Trying to keep laughing, KrisV
Oh Marion, I agree. Most people I talk to go – “Oh liver cancer. Guess he drank too much.” Makes my head explode when I hear that. I educate them….nicely most of the time. It’s so hard to get people to understand where and what it is. Part of me wants to start carrying a diagram so I can show them.
It just frustrates me when people paint everyone with the same brush. Cancers are so different and this is more like the orphan diseases that are out there. Affect just enough people to be frustrating but not enough to make the drug companies sit up and notice. It takes special people – like our oncologist – that are willing to take tried and true chemos and treatments and apply them differently or to look for something totally new.
We can just keep hoping and praying.
KrisV
Of course, I think I got so peeved because his ex-wife just irritates me anyway.
