mlepp0416
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Adam:
My thoughts and prayers are with you and Petra and your children. Words alone cannot express….
Hugs,
MargaretPepehorse: Infections while on chemo is very common. Not ‘from’ the chemo cocktail itself but from the decreased blood cells because the chemo not only kills the cancer but also kills good things too! Anyone with either a stent or an external drain tube is more prone to infections because of the foreign body inside the body. My husband Tom (and many others) have had numerous infections, and once they are on the right antibotics the infections tend to clear up quickly.
One of Tom’s doctors told me that he’s in less danger of dying from the cancer than he is of dying from an infection. So I am continually on tube of knowing what to watch for (signs of an infection) and if I thing anything is out of the ordinary I am on the phone to his doc! (And so far each time I ‘think’ he is coming down with some type of infection I’ve been right). In Tom’s case he never starts with a fever. It can be something as sleeping a lot more than normal, his color or skin tone, complaining of being tired, a change in the color of the bile coming out into his external drain bag, a foul smell of the bile….
Don’t be afraid to ask the doctors any questions, do research and watch for simple changes in demeanor, etc. All those weird little symptoms can point to an infection – and you can insist on blood work to check the white cell count. Normal is under 10,000 and anything over that means an infection!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Thanks Marion! Once again the nurses who take care of Tom for his tube exchanges complimented me on the care that I do for Tom. They know that when he comes in there is not going to be any ‘gunk’ or skin breakdown under that bandage! He is their star patient. One told me yesterday that whatever I’m doing is working and that I should keep it up. They are just amazed that his skin under that bandage is as smooth as a baby’s butt, even after two years with a drain tube!
Byron – you’ll have to convince your daugher that ‘not all doc’s know whats best’ – case in point, one of Tom’s (former) docs told him that he would not live more than 6 months when he presented with his new tumor in Nov. ’09 – and here we are in Oct. ’11 and he is still here! He would have just listened to that doc and went home and probably would have died. But MOMMA (me) insisted on getting other opinoins cause I was positive that we could fight this cancer with the right options! My thoughts were to try radiation and chemo and that is exactly what we did, and proof positive, he is still here, AMAZING all of his doctors cause none of them were very positive that it ‘would’ work. And, the power of prayer and a positive attitude goes a long way too. Thinking outside the box also helps and mom’s are good at that.
Hugs to all.
Go with God and KEEP KICKIN’ THAT cancer!Margaret
Routine tube exchange for Tom tomorrow morning. He’s been doing well, gaining a few pounds, some days eating is ‘iffy’ but he does drink the boost so that helps! No infection at all this month, so the daily flushing of the tube and the cleaning of the wound is the key. No more listening to the doctor who said “You can flush the tube every other day”…nope not listening to that cause that little screw up cost Tom 3 days in the hospital and 10 days of IV antibotics!
I know that everyone on this site will be thinking of him tomorrow morning, so I’m thanking you all in advance!
HUGS!!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Dawn: My husband Tom had a successful left liver resection in June ’09, no chemo no radiation afterwards cause they had clean margins. He initially had drain tubes for 7 1/2 months. 18 months later he started turning yellow which was one of the signs we were to watch for. Turns out he had another tumor in the remaining right bile duct which involved the hepatic artery, therefore in operable.
To make a long story short, his then oncologist told he he had less than 6 months, radiation and chemo would not help. We got 2nd, 3rd and 4th opinoins and thank goodness we did. Tom underwent 28 rounds of radiation, then oral chemo (Xleoda) and later on they installed a port because a radiologist mis read a scan and said the cancer had spread to his groin area. The started him on Gem/Cisplatin and after about 5 rounds did another scan and the ‘mass’ was gone so they discontinued all the chemo.
It’s been just about 2 years since he as told he had less than 6 months. So just goes to show that most doc’s simply do NOT KNOW! The best thing is to take it one day at a time, say a lot of prayers, be positive. Do the things that you can, research, become educated as much as you can on this cancer. Never take no for an answer, instead ask what else can we try! Make sure the doctors have some experience with this type of cancer, or that they have others doctors that they can consult with if necessary. Write down your questions as you think of them (cause else you will forget them). There is no such thing as a dumb question.
Our thoughts and prayers are with you and Theresa.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Lainy; You are right those grandkids are something nice! What a sweet way to honor and remember their Papa’s.
I can’t post this yet on my FB page cause I want my daughter Stacy to post it officially on her page first, but Tom and I are going to be grandparents again! I am so excited and am hoping for a girl this time. The last 6 have been boys so it’s about time Tom and I get a little girl to spoil….not that I mind spoiling those little boys, but I think it’s time for a little girl! Keep your fingers crossed for us!
And now Tom has something wonderful to look forward to, something to give him more incentive to fight harder. Baby will be here sometime in March if I calculated correctly.
I LOVE being a grandparent, they love you unconditionally. We had little Tommy this past Saturday and overnight till Sunday at noon, and all we heard all weekend was Ama, Ama and Papa, Papa. When his mom got here he wanted nothing to do with her and said “No, Ama!” I asked my daughter Brianne if that made her sad and she said “No, I think it’s wonderful that he loves you so much!” Poor little guy cried for Ama and reached out for me as they walked out the door. After she got him home and down for his nap, he work up twice crying for Ama! Gotta love that 2 year old, he just melts my heart and Papa’s too!
Go with God and all you grandparents out there, enjoy your grandkids!
Hugs,
MargaretYesterday was my husband’s 2nd Grandaughter’s 18 birthday. I’ve known for some time now that his three oldest grandaughter’s all were planning a surprise for him. Kassie got a tat on her lower back with the Liver cancer ribbon with a sun behind it because Papa always called her Sunshine when she was little. And the words Hope, Faith and Fight.
The eldest grandaughter has a Petunia with the Liver Cancer Ribbon and is thinking about adding the word Strength. Papa nicknamed her Petunia when she was about 2 cause she always helped him plant the Petunia’s.
The youngest grandaughter has the Liver Cancer Ribbon with the word Hope, but the O in hope is actually a turtle shape cause Papa always called her turtle when she was little because she was so pokey!
Papa nearly cried when he saw them but did hold back the tears until we were in the car headed home. The three girls all planned it themselves and each worked out their own designs.
Gotta love those grandchildren.
Margaret
You can always turn on the tape recorder before going into the doc’s office and have it in your shirt pocket (Men) or in your purse in an open pocket. Most of the newer digital recorders w/pick up the sound quite well. We never had any problems w/any of Tom’s doc’s letting us record visits. If I was not there with him, he told them it was for me so that I could hear everything.
Or yes, taking notes is another way. Have your questions written down and simply write the doc’s answers.
Hugs,
MargaretAdam:
Have they tested for ammonnia levels? When my husband Tom, who has CC starts to act weird, talk weird, gets confused, etc. I get him to the doc as fast as I can and each time it’s been high ammonnia levels in the brain. The only way to get it to come down is by making him go to the bathroom on a regular basis.
The give him Geranlac in liquid form. 30 ML’s 2x a day does the trick and he is back to normal. If your wife is not having a bowel movement every day, her confusion and hallucinations may be being cause by high ammonia levels. Being bound up is a side effect of the pain killers but also causes high ammonia levels in the blood therefore affecting the brain. I’ve been through this with Tom at least 3 times in the past 9 months.
This is very serious and I suggest that you have her doc run a blood test and check her ammonia levels. Brain confusion is something you have to watch for with jaundice as well because if that level gets to high (bilirubin and ammonia) it can cause pernament brain damage.
Hugs to you both.
MargaretNancy: My thoughts and prayers are with you and your family. Doug was always an inspiration to my and my husband Tom. Please come back to this site as it will help you heal and you can continue to advise others that continue to fight this terrible cancer. I know that one day I too will be in your position when Tom’s body can no longer go on and I have no idea on how it will impact me but I know that it will be awful.
Hugs to you and yours. Doug is now at peace and up there with all the others who fought this battle – they are now looking after him.
Go with God, keep Doug alive in your heart.
Margaret
Lisa will be missed. I often visited her website on Caringbridge.org and we emailed often on issues. My thoughts and prayers are with her family.
Go with God, Lisa,Margaret
kdhokie
welcome to the board that no one really wants to join. My husband Tom had his original liver resection in June 2008. He ended up going home with two drain tubes. On was behind the remaining back side of the liver, and the other was below the liver. The cut side of the liver had developed a lead. There was a pocket of bile behind the liver and the remainder of the bile leaking was going into his belly cavity. The tube behind the liver was in place for about three months. The lower drain (JP drain) was in for 7 1/2 months. The average time for a drain tube, per Tom’s surgeon can range from weeks to months with the median of 77 days. He of course is very unique so he had to have his jp drain longer. 18 months after his resection, he too started turning yellow and they were unable to get an internal stent in, so now he has another external drain tube which keeps him from being my ‘yellow man’. His tube has to be flushed every day and the wound cleaned and rebandged (take less than 5 min) as I have it down to a science since I’ve been doing it for the past 20+ months now. He has his external tube exchanged out for a new one every 4 weeks.I am the ‘Margaret’ that Marion was referring too. Feel free to ask me any questions and I will answer them to the best of my ability. Having a drain tube is not the worse thing in the world, but both Tom and I would not mind seeing it go away. We had a big bonfire and burned his JP drain after they took it out! This on I fear is with him for the remainder of his life since his new tumor is inoperable and involves the hepatic artery. Surgery is not an option and the drain keeps his bilrubin level at around a 5 – 6 which is better then the 24,900 he was at!
Go with God – prayers are coming your mom’s way.
(P.S. Tom was given 6 months ago in Dec ’09 and he is still here!)
KEEP KICKIN’ THAT cancer!Margaret
Randi:
I’m sorry for your loss of your friend and mentor. Somehow no matter who it is that passes from CC it affects all of us on this forum in one way or another. I have been brought to tears many times when reading of someone passing on. Not because I know the person but because it strikes very close to home. I did get rather close to one person on this board and we were emailing, etc and I sent her some Tegaderm films so she could bandage her leaking external drain tube and those tegaderm allowed her to travel to Wisconsin to visit her grandmother before passing. Then there was of course Teddy’s passing on that also brought me to tears. Teddy and Tommy were like CC buddies in the way their CC came on, etc. and over the short time that I ‘Knew’ Teddy it was really Lainy that my tears were for, because I knew how much she was going to miss her soulmate.Just remember that you are not alone, you have a whole family (web type family) here and remember that we are all here for you for moral support if nothing else.
Saddness, grief, tears, anger, rage, peace are all normal feeling when we lose someone who has touched our lives.
Go with God and KEEP KICKIN’ THAT cancer.
HUGS,
MargaretLOL Marions, yes, I have become a tube expert. I’ve been dealing with a Tube of one kind or another since Tom had his surgery 3 1/2 years ago. He had two initially. One was a JP Drain, the other was the kind he has today. After 7 1/2 months they pulled the JP Drain and the other was pulled after 3 months. Then we had about 7 months with no tube until he turned Jaundiced and he’s had this tube ever since.
I can flush it, unbandage it, clean it and rebandage it all in less than 10 min, most times even less. It does not take long to do at all, it’s just another thing I do for the love of my life. I get scared when I hear of others who have an external tube and their doc’s don’t advise them to flush it every day. The wound gets all gunky with dried bile (which can cause infection) and if the tube is not flushed it can clog up very quickly cause bile gets sticky and dries up (kind of like a scab) I clean his wound with a q-tip with antiseptic on it, then wash the entire area with antiseptic, including the tube.
Feel free to send any questions on tube maintenance 101 to me!Hugs,
MargaretTom had to go in for an ’emergency’ tube exchange today. Started noticing blood in the tube on Saturday. On Monday morning the entire bandage was soaked through with bile. I flushed it and cleaned it and got it all nice and pretty again. This morning I checked the bandage about 10 min before I had to leave for work (had to go into the office today) and sure enough soaked through again and this time I had 4 gauze pads on. He called the doc and they got him into surgery at 1pm. His daughter took him. The end of the tube is a ‘pig tail’ and apparently the end was no longer a pig tail, it had loosened up therefore causing the bleeding. And blood and bile don’t mix well rather it forms blood clots, therefore clogging the tube up. He’s all fixed up now and hopefully he can make it the full 4 weeks this time rather than two.
We are still KICKIN’ and TICKIN’ here in Wisconsin
Love and Hugs to everyone!
Margaret
