tess
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Hello Quanyinprayer, Dad started out with a size 8 tubing, went to a 10, and could have potentially gone to a 12. I’ve also heard of others having a 14. Dad did have to have his flushed 2X a day. Occasionally the site would leak a bit with this flushing. Other, random times, the site would also leak. The docs indicated that they were not sure why this happens, but it does, and that they weren’t concerned. They further said that two instances that should cause concern are if the draining doesn’t stop leaking out or if the color gets funky. He was also leaking bile from the pic line in his arm, the bandage window would be very green after just a couple days, at times. They had never seen this before, and even called in the mfg. of the window-patch, as they thought there was some strange reaction going on. But they did test it and it was not infected, it did not have an odor, there was no discomfort or redness…. simply increasing amounts of bile leak. It is good that your Mom is having it tested, just to be sure.
The challenges are so difficult to manage & understand, they are hard at so many levels & I’m sorry that your family & your Mom are going through this.
You’re in my thoughts.
Tess
Hello Juliegirl, we too are so glad you’ve found the website! The people here have been a wealth of knowledge to me and so many others, which I believe you too will find to be the case, no matter how big or small your questions are. Keep us posted on what next week’s appointment reveals, you’re definitely not alone!
Best to you,
TessHey David, sorry to hear about the news you received this week. My Dad was told by 9 out of 10 docs that his cc was unresectable & that chemo was the only option. A doctor, just down the road from you- in Sayre PA (at the Robert-Packer Guthrie) said that he’d be willing to try to resect if they could reduce the size of the tumor just a bit. So they were pursuing chemo & planning radiation via brachytherapy (8 out of 10 others also said no to radiation). Both the radiologist & the surgeon on his cc team are fairly new to the Guthrie. I believe Dad’s tumor was somewhere between 2.5 & 4 at that point. The nurse told us that this doc was not afraid to attempt such surgery, as was not the case with all surgeons. His name was Dr. Douglas Trostle, General Surgeon, Phone: 570-882-2388. Just thought I’d pass that on in case you were interested in locating a second opinion. Best to you as you move forward with plan B.
Jim, the doc told my Dad that three key diagnostic tools that he was looking at, when assessing the overall state of the progression of the cc, was the CA-19 tumor marker, the CT scan showing the size of tumor and the bilirubin level. He indicated to Dad that while the chemo had halted the growth of the tumor, the assessment was not favorable because the other two factors were not in his favor – noting that the bili level & CA-19 were on the rise. The docs interpreted this to mean that the cc was progressing. But Dad’s levels were high, bili levels were up near 22 & his CA-19 fluctuated between 9,000 and 27,000. Wishing you the best Jim.
-Tess
Ohhh Hopeandgrace, I am crying for you right now. ‘Beautiful warrior’ is such a strong descriptor of your Mom. It is great that you believe that you’ll see her again, and what a reunion it will be. When I get really down, I try to imagine my Dad having his own daily reunion with family and friend that passed before him. When he passed I wrote him a letter that included the names of a great many people that I wanted him to go pass hugs on to, hoping that it would keep him busy & not lonely in the next life.
It was the two week anniversary this week of my Dad’s passing and I cried myself to sleep last night, trying desperately to imagine that he was giving me a hug goodnight, so I certainly know what you mean by longing for that embrace.
I’m so sorry for your pain and loss. You’ll continue to be in my thoughts and prayers Hopeandgrace.
Tess
I am so sorry Rose, I too thought of you so many times yesterday. You’ll continue to be in my thoughts.
Tess
That is wonderful news Deb, so very glad to hear it! I can feel your (well deserved) excitement right through the board!
Best to you,
TessYour Mum is a fighter Marc, as are you. It is a very difficult time, your in our thoughts and prayers.
-Tess
Patty, out thoughts and prayers will certainly be with Chuck, Michelle & the kids. She was simply too young.
-Tess
Sorry to hear about so many people having this problem….. The drain was a constant source of pain for my father. We were never certain if it was the cc, the drain, gas, etc., & docs could never confirm. He too had it changed out a couple of times, going to a larger drain. The flushing was also painful for him, fortunately he had Mom to help. There were conflicting opinions on how forceful to be with the flush, but Dad could only stand it rather gentle because of the pressure. He too could rarely get comfortable, in that lower ab region, regardless of his position. We took all tubing/flushing questions back to the nurses that put in the tubing, as opposed to the Onc. I know that Dad ate very little, and was miserable without a good BM or if the gas was aggitating his insides.
-Tess
I didn’t realize this… I see that he was treated by Dr. Greg Gores of the Mayo Clinic, the same doc that told us that chemo was the only real option for my Dad’s cc. Per an earlier article, Payton summed it up quite welll….
“”Am I scared? Hell yeah, I’m scared. Wouldn’t you be scared?” he asked. “But it’s not in my hands anymore. It’s in God’s hands.”
source: http://ad.go.com/nfl/news/1999/1031/144491.html
Lainy, perhaps you might have luckier luck going through his son Jarrett Payton. It looks like he’s still making public appearances, with a music/speaking career rather than football, & was just married this month. The family’s website indicates he enjoys speaking at schools in and around Illinois on the importance of education- what a great speaker/advocate he’d make for a cc affiliated symposium.
(http://www.payton34.com/jarrett.asp)
-Tess
Dear, Joyce, Barbara, Steph and Janet. It is so good to come here and hear from my old buddies. Thank you for that! I simply don’t know how people do it without such support systems. It is amazing how much has transpired over just the last few months, the immense amount of loss & the growth of friendships. Gosh Steph, you’re right, there was just a couple weeks between the passing of our parents. I thought of you too as I prepared for the funeral arrangements (per your earlier posting) & how much I too wanted to ‘call in sick’ that day. For those of us that have lost our loved ones, I hope that they connect (on our behalf) on the other side…. And Barbara, we’re thinking of you and your Dad everyday, hoping for peace in your heart to get through one chapter at a time, and comfort for your Dad.
Love to all,
TessYes, ljg, it’s a long road… it snuck up on me this AM when I heard an old message from my Dad on the answering machine & saw an old cigarette butt of his still in the patio ashtray. As this small town is the same one his parents grew up in, he grew up in, I grew up in & my son is growing up in…. there are memories (literally) at every corner. But the tears are for love, that is for sure.
And thank you Moon for the well wishes & hugs. Dad is most definitely always with me & I too hope that peace will come in time.
love,
TessMorning Barbara. You made your decision out of love and your Dad received relief… He’s so lucky to have you, and I hope you both enjoy that taste of sweet wine together this evening! It’s wonderful news that he ‘wanted’ to eat, the small miracles of a day to be grateful for.
Sending many hugs….
Tess
