kvolland
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April 30, 2014 at 2:22 am in reply to: Advance Planning: wills, trusts, powers of attorney etc. #81991
kvolland
SpectatorLinda –
Very good. I am actually going to print out your post so I can give it to my patients so they can understand it all better. I run into these questions all the time.
The first thing we did when Mark was diagnosed was get all of our ducks in a row. We did it all but the POLST and he chose not to make that decision yet….leaving it in my hands if the time came.Good post.
KrisVkvolland
SpectatorSteve –
Welcome to the best little family no one wants to be a part of. Surgery is the best thing you can hope for and since you have one and getting ready for another you are miles ahead. It is shocking to hear those words….I am a nurse and didn’t even know what it was. I looked it up just like everyone else and found this wonderful family.We will be here for both of you. And sending positive thoughts for both of you.
KrisV
kvolland
SpectatorLisa –
So sorry you had to go through it again. But you will probably feel better once it’s done and the temp is down. Sending positive thoughts your way.KrisV
kvolland
SpectatorYou know that just cracked me up. We have made decisions that way too. Gosh, I really don’t want to call right now…..we know they will make us go in and now’s not a good time. The worst times was when my son abscessed after his surgery and HE wanted to wait until later in the afternoon to call so he could finish something up. I let him.
Temps seems to be part and parcel of this disease process. Mark’s GI doc said that in his case it was to do with narrowing of the surgical connection between his liver/bile ducts and the small intestine. Causes the small intestine contents to pull/back into the liver/bile ducts. They wanted to put a stent in but that too increases the risk of infection so we declined.
Hope your temp stats down so you can watch the playoff game.
KrisV
kvolland
SpectatorSo sorry for your loss. I too am glad that you got to spend so much time with him in the end. It is what you both needed.
KrisV
kvolland
SpectatorJulie –
I am glad that you persisted and are getting some attention. Out ONC says anything over 100 can be the sign of a problem. Mark had three different times that he had that problem after surgery. The first time was three days after his first port was put in. He ended up in the hospital for 5 days. By the third time they pulled the port but they believed it was actually a GI source which seems to have cleared itself. He went from Sept to April with no problems then a couple of weeks ago it popped to 101.7 but they never found the source.I will say that Levaquin (levofloxacin) has been our best friend over the last few months. We have a long-term prescription from the ONC for it. As soon as Mark creeps a temp then we start it. Used it for an upper respiratory infection and once for a sinus then the last time for the unknown temp in April.
Also you can run a low-grade temp if you are dehydrated. Usually in the 99-100 range for most people.
I also wonder about the interventional radiologist that put in you port. We have had two of them and I have seen many placed and they have always been placed by a surgeon under light, general anesthesia. I wonder if there was a reason for that.
Hope things turn out well for you.
KrisV
kvolland
SpectatorCrissie –
I am so sorry that it has gotten to this for you and your dad. Being in hospice lands you with the most caring hands at this point. I have worked with a lot of hospice patients over the years and every one is different (I know you get tired of hearing that). As long as he is keeping some fluids (even just a little) he can go some time. If he cannot keep fluids down then the time may be even shorter. If Lainy has not already sent it to you then have her send you her list of things to look for. It will help.
One thing I will say is that even if it seems that your dad is not awake and not able to hear you, keep talking to him. The understanding is that hearing stays even when someone is in a coma. Talk to him as much as you can. I have had people read newspapers, books or magazines. Hearing a loved ones voice can help ease anxiety.
So sorry it has gotten to this.Hugs,
KrisVkvolland
SpectatorJulie –
So sorry you had a bad day. I understand how you feel and like Lainy said it just means you are normal. The grandson therapy should work wonders, I know my grandson therapy helped bunches over the last year.Here’s to today being a better day.
KrisV
kvolland
SpectatorHello Olga –
Welcome to the best little family that no one really wants to be a part of. We are here for you. So sorry that you were hit with the awful disease like that. And on the phone no less. My husband was diagnosed almost a year ago and believe me it hit us hard too. And as far as not knowing about it…I didn’t know a thing and I am a nurse.
I would say about the changes in the scans may have to do with who is reading them. Radiology is only as good as the doctor that is reading them so I would take it all with a grain of salt. I know we were told that when this all started. Also that if he is laying on the table slightly differently that can change things too. I would think that it would be difficult to say for sure that the lymph nodes are involved without a biopsy since they can be enlarged for a variety or reasons. But certainly talk to your ONC about that. They may be able to give you a better answer.
What type of chemo is he doing? Many of us, including my husband have done systemic chemo and had good results with it. Also the thought of doing it may also be scarier than actually doing it. That is the way it was for my husband the first round.
Keep us posted and good luck!KrisV
April 26, 2014 at 2:13 am in reply to: Treatment for abdomal and incision pain after resection? #81821kvolland
SpectatorLola –
I know you said they switched to Oxycodone, is it the form with Tylenol in it like Percocet or Roxicet? If it’s NOT one of those then you may trying giving her some Tylenol 3-4 times during a day. The narcotics work in the brain to change your perception of the pain so you have pain but don’t care. The Tylenol works out on the area where the pain comes from. If her pain med has Tylenol in it then don’t double up.
I would also do as Lainy said and give her a small pillow to hold against her belly to splint the area when she coughs, sneezes, laughs or moves around.
Also gas can be an issue. Something like Simethicone (Gas-X) can help break up the gas bubbles.
Give the surgeon or ONC a call to see if there is anything else to do and if you should be worried.KrisV
kvolland
SpectatorCongratulations Patzel! That is the best kind of news to hear. So happy for both of you.
KrisV
kvolland
SpectatorHi Vince –
Welcome to our little family. Many of us have been in the same boat with making that decision. My husband was diagnosed in May 2013 with perihilar CC with surgery in June 2013. His tumor was 2 x 3 x 2 with one positive node out of seven and clean surgical margins on the second try.They did find some invasion along the nerves and lymph system too. We opted to do 6 months (12 treatments of Gemcitabine/Oxaliplatin) then just finished 25 doses of IMRT with 5FU infusion. We chose to go that route based on our ONC recommendations due to the concerns over spread.
Our doc said he basis his recommendations on four questions: How big the tumor was, clean wound margins or not, any metastasis and the differentiation of the cancer (how much the cancer cells are like the original cells). According to him they considered his rather large, clean margins but on second try, positive node and moderately differentiated so that was two for chemo, one so-so and one against it.
We went for it because my husband wanted to give every chance there is to beat the cancer and not have it come back. But not to say that there are times he wished he has skipped it all….especially right now since he is ill from the chemoradiation he just finished.
Hope this helps.KrisV
kvolland
SpectatorSomething I was told too about the numbers is that was are reading the past with survival rates and recurrence rates, not what is happening now or what will happen in the future as treatments change. In five years we can look back and see what the survival rates for right now are.
I hope that makes sense. I too worried about recurrence for Mark initially but we decided not to talk/think/worry about it until it happens. But I have to confess it really will always be in the back of our minds. And I think it is that way with any cancer.
KrisV
kvolland
SpectatorWell, we are home again?! They gave him some fluids….did that before they even got his blood work back since his blood pressure was soooo low and he was getting dizzy standing up.
Our doc is gone this week (Dr Picozzi is in Japan giving a lecture) so we saw one of his partners Dr Rosales. Wonderful man. Of course, never run into anyone who we really didn’t like. We had the choice of coming back up tomorrow then Mon, Wed, Fri for fluids or…..I could do it it at home. WooHoo! A doc that really understands that stress of the drive. After a couple of phone calls I had it all set up. The supplies will be delivered to home and I can deal with it here….and still work.
His protein levels are still really good so they aren’t super worried. He said it can take two weeks for the stomach to really start working after the radiation. If foods feels like it is getting stuck, especially foods with texture, then to stick with a soft, pureed diet. He told him it was gross but “pre-chewed” was best. I about died laughing because I tell my patients that all the time.
They got him in and out fast today which was nice so he could sleep more at home. Oh well, if he’s asleep he’s not complaining.KrisV
kvolland
SpectatorThank you Lisa. You gave me a chuckle which I needed right now. I wish I could put my finger on which it but is suspect there is no one cause. First thing he did this morning was throw up. I may set my alarm for the middle of the night to give him an anti-nausea. We have tried the Biotene, salt water rinses, the radiation therapy mix (Lidocaine, benadryl and Maalox) and I can’t get him to do anything routinely especially when I am not home to remind him. I bought some Super Digestive Enzymes at GNC that are supposed to help with digestion after stuff like this but he will only do it if I remind him. I kind of yelled at him the other day telling him he needed to take some responsibility for himself if he wants to get better. Then I felt so guilty about it.
I am only lucky at work because we are really slow right now. If we were super busy then they would be pushing. As long as I can keep my current job title then even if I work less that 30 hours my insurance cost an the same. Sometimes so thankful for my union. Although my boss is pretty cool and working with healthcare helps too.Thanks, Kris
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