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Hi Lainy,
I’m pretty sure that the hospice nurses will receive more out of their visits then they give…Grace and Peace to you,
bob
I too am a long term survivor – thirteen years. My surgery was a choledocojejunostomy (sp?). We did not end up with clear margins. Had chemo and radiation afterwards and have been cancer free since. Have recently been dealing with issues of scar tissue in the ducts of the left lobe causing blockages leading to recurring sepsis. The docs are not quiite sure yet what to do with me. Also, I am a Seattle native and still live in Seattle. Perhaps there’s something in the water…
Though this is indeed an evil, scary disease, there is always cause for hope.
Grace and Peace to all,
bobPam,
I too got a kick out of the fact that your Dad wanted a banana split. Though there have been no clinical trials, I’m pretty sure banana splits have real curative powers. That’s my story and I’m sticking to it…Grace and Peace,
bobHi Minnie,
I had a number of similar episodes. It’s probably brought on by bile build up in the liver which promotes infection I’m usually given an IV treatment of Zosyn which has me stable in a couple of hours. BTW, they can also treat the rigors (severe chills) if they persist with a small dose of Demoral. It is amazing. The rigors stop in a minute or two. Prayers going out for Karl for success on Aug. 20…Grace and Peace,
bob
WOW!WOW!WOW! That’s all good… I am so happy for Dave (and a little jealous). I was supposed to have my tube out early in July… then mid July… now mid August. Like Dave, I’m soooo ready. Not that the tube and the occasional bag hasn’t been loads of fun… In fact, Donna and I have joked around a lot about “the tube”. I’ve talked about it being evidence of an alien abduction. They come in the middle of the night and extract my essence. I’ve talked about how “chicks dig it”. You know, when you’ve been with a man with a drain tube, you’ll never go back to a ‘normie’. One of my favorites involved a dear friend of ours. During a discussion of my health issues, I referred to the tube as a “billiary catheter”. You need to understand that the friend often speaks before thinking so she says “OMG, they ran it up through your penis!”. That was good for a round of laughter. Another time during one of many hospital stays, a friend was in town with his fiance and wanted me to meet her. So he brought her to my hospital room and as I stood to give her a hug, the bag which had been discreetly under my stylish gown dropped down. “Hi, I’m Bob and this is my friend ‘bile bag'”. And my grandsons still occasionally ask to see my “tube”.
Please keep us informed. I have a particular interest in Dave’s progress as his journey tends to mirror mine in so many ways. I’ll continue to pray for you and Dave for God’s very best.
To the other members of this site, I apologize if any of my comments were a little gross or offensive. Afterall, I’m just a man…
Grace and Peace,
bob
Isisman,
I am so sorry for what you are having to deal with. I can’t really know what you are going through but I will continue to pray for you and your family.Grace and Peace –
bob
Ladybug,
Wow! I was exhausted just reading your account. The last ten months have been a similar experience for us starting with a couple of days spent in ICU. My BP had also crashed (68/38) due to a blockage of a duct leading to sepsis but apparently Dave added several complications – I’m sure just to keep it interesting. We’re still trying to sort out all we know about the blockage after ten months and bunches of tests. At a few recent Dr. visits they had the nerve to use terms like ” recurrence” and even “tumor” and “cancer” but the conclusion remains scar tissue. We’re actively working the problem. Also, I loved your scripture reference. While in the hospital, I felt like God asked me “So Bob, do you trust me”? The best response I could come up with was “Yes, I trust you Lord – help my lack of trust”. I’m certain that our Heavenly Father wants us to be fully honest with Him and and has compassion on us when we feel our faith is lacking. After all, even faith comes from Him. After a dozen hospital stays in the last year, during the most recent event, I wanted to say “I can’t do this anymore” but I realized that of course I can do this because…He is with me and has promised that “He will never leave me nor forsake me”. Every now and then I lose my way and start thinking that this about “Bob” not God…As one being cared for by a loving, devoted wife I can tell you that Dave appreciates you and your selfless, loving care more than he is probably able to express in words. May God bless you and strengthen you. And may He drive doubt away.
bob
Great news Dawna!!
Take that cancer! Take that devil! We’re coming after you with chemo, radiation, scalpels, hope, faith and loads of prayer… Cancer once loomed large but is on the retreat!Prayers for your Mom,
bob
Hi Mary,
There are apparently two different scenarios. I have experienced rigors and then temperature spikes which have led to hospital stays. Blood cultures indeed show infection, typically some kind of e-coli. Like your husband’s, these came out of the blue. Then there have been numerous times when they change out the ‘tube’ and the disturbing of the bacteria in the intestine and liver causes the ‘chemical reaction’ which leads to rigors. As far as foods, I try to eat ‘healthy’ but have no issues with any foods. Thanks for the good wishes. I pray for people on this website daily…Charley,
Congrats indeed on your anniversary. My next anniversary is Dec. 18 which, Lord willing, will be 14 years (but then who’s counting?). I believe the Lord is with you as well. When I was first diagnosed, I felt that I had ‘heard’ God tell me “Embrace this. I will go through it with you”. And I have been aware of His presence nearly daily giving me hope and peace without having any idea where this experience would take me or what the outcome would be. I too have been blessed with prayer and humbling support from my family and church family. Praying for hope, peace and “remission or cure” for you…bob
Hi Marion,
Hope I didn’t come off as a whiner or complainer. I didn’t mean to – just expressing some recent frustration and wishful thinking. When I was first diagnosed I followed the course set by the various docs without question and had exceptional success. Thank you doctors and thank you God! Recently I’ve had a series of bouts with sepsis due to blockage of a duct. A plastic stent was placed which was replaced every 6-8 weeks which usually caused ‘infection’ which was treated with a hospital stay, IV anti-biotics and then followed with 10-14 days of oral ant-biotics. I had a procedure Weds. to change out the tube and during a discussion with this IR doc he stated that these ‘infections’ after the tube change were more than likely not infections but the symptoms (extreme chills/rigors) caused by a reaction from some kind of chemical released by bacteria disturbed during the procedure. So, after the procedure they kept me for four hours for observation and sure enough, uncontrollable rigors set in as before but this time per the IR docs orders they treated me with a dose of demoral. Within a couple of minutes the rigors ceased. I napped for a couple of hours to sleep off the effects of the demoral and was released feeling a little groggy but fine. I now realize that I was hospitalized at least a few times and treated with various anti-biotics needlessly. And I always had reactions to the meds – usually nasea, diareaha. This doc also wondered why the tubes were changed out so often. Again, my treatment over the last several months may have looked different had this IR doc been a part of the discussion. Knowledge is power…Blessings and healing to all,
bob
Hi Lu,
That’s great news indeed! Thanks for sharing. I’m sure good news inspires all of us. Just curoius… Is your Dad’s doctor Henry Kaplan? The reason I ask is that Kaplan is my onc. Prayers for ongoing success for your Dad.bob
Christine,
“…poop an ice cube” caused me to laugh till tears came. Proverbs says that “A merry heart does good like a medicine.” Your mothers sense of humor will serve her well. Prayers for your mother and her recovery…bob
Hi Isisman and All,
No nodes involved but lacked clear margins. Did have chemo and radiation follow-up after a long recovery from surgery. And I had chills or rigors for many weeks after surgery. To the extent that my wife made up a bed for me in the living room to avoid stairs to the bedroom and put an electric blanket on it to help me deal with the rigors.I am now experiencing rigors often as evidence of recurring infections due to duct issues. I usually end up in the hospital. We’re working on this…
Blessings, Grace and Peace to all,
bob
Hi Michael,
I too lacked clear margins. Don’t know how common that is. Had chemo and radiation follow-up and then years of blood work, ct scans, ultra sounds etc. I am a now thirteen year survivor with some recent issues and have been told that this could still be tumor related, though highly unlikely. Even as I am writing this response, I am praying that the living God will bring healing and peace to your dad.bob
Rick,
Great post. For most of my adult life, I’ve been kind of a ‘hug’ kind of guy. Some people are at first a little uncomfortable but most adjust. Thursday I had an appt. with my original surgeon whom I haven’t seen for thirteen years and greeted him with a hug. Surprisingly, he responded well. Hugs are great!! If I have the pleasure of meeting any of you, as I have with Teddy and Lainy, hugs are definitely in order!Love and Blessings (and hugs) to all…
bob
