highsmith
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Thanks Lainy! We are at Barnes (In St. Louis) and I do have a second opinion with another onc. next week. We, too, have just had every complication after the Whipple, but it has bought us time, which my dad would have had, maybe, a few weeks without it. I am grateful. In addition to the Whipple, my dad had 80% of his colon removed last year, so his innards are probably one in a billion!
Hope things are going well today for Teddy.
Stacey
Margaret-
I hope the chemo is doing the job and there was no error on the readings! I also hope the blood and antibiotics get Tom back on track!!!
Stacey
Thanks Cathy and Lainy!
We have been really lucky that no Dr. has thought they were above the mysteries that have rolled our way. I am grateful we have so many opinions.
Re:cyberknife, I will ask again but we were told radiation was off the table previously. I asked for a copy of the MRCP report today but forgot it in the midst of everything going on.
Cathy-I had to laugh at the holidays at Barnes. My dad seems to have a knack for getting a fever about 10pm Saturday nights. As you might know, Barnes ER is a unique experience!!
Julie-
Welcome! Like Jathy1125, my dad is alive because of Barnes Hospital in St. Louis. They have a large liver speciality and world class doctors. My dad is
alive today only because of the people at Barnes.My dad, too, had clotting issues, which can be overcome with some medications, but, like you said, the resection still needs to make a difference if they overcome the clotting issues. My dad had stents in for three weeks to get his bilirubin to a reasonable enough level to do the Whipple, which is a surgery you will find many on here have had and gotten great results with.
The amount of information here is overwhelming at first, but keep reading and ask questions! It is a gold mine of answers!!
Stacey
Rach883,
Congrats to you!!! What a journey! I am so glad you found us and are here to share your incredible story! It seems like everything lined up after an awful struggle in such a short time!
How are you feeling? How long is your course of chemo? This is a wonderful community!!!!
All the best,
Stacey
Margaret-
As the sole caretaker of my dad, I feel for you!! We, **fingers crossed**,start chemo next Monday, so don’t scare me like that!
As my dad gets more poor results and mortality stares him in the face, he is more on edge than ever. This from a man who tolerated two fairly adventurous daughters growing up. I agree 100% with Lainy, the lack of breaks wears on me now more than ever. I plot and plan when I go to the market and leave him alone. I talk him into coming with me and then just sitting in a running car while I do errands, so I know I am within sixty seconds of reaching him. My dad is in pretty rough shape, so he cannot storm out, but we certainly take separate ends of the house at times.I understand his children may not be willing to take this on like you are, but could they come over one night/afternoon a week and do the cooking or whatever help he needs while you go out to dinner/movie/shopping/nails/massage, whatever!! DO it for yourself!!
All that said, convincing Tom, or simply maybe talking with his Onc. and making at least an anti-depressant part of the regime, would be a high priority too. Luckily we have had my dad on Lexapro since his original surgery, before he was able to say “no” to it. We recently consulted a psychiatrist, who specializes in cancer patients, and talked about anxiety meds and what we may need on the horizon. I think the psychiatrist thinks I need it more than may dad, but he was very accommodating of my requests.
Much luck!!
Stacey
Julia,
I had to laugh at the toxic boyfriend! Very cute! Whenever we get a discharge from the hospital, I always tell my dad “no more Club Med service”…
Hope your sister responds quickly and is feeling better!
Stacey
Thanks Jemima! I am over my pity party. I guess the shock of having just had an MRI and three CT scans in the last three weeks and then this came back so changed. We are moving forward and looking forward to Thanksgiving. I live in Denver and have been in St. Louis since March because my dad got so sick so fast. Luckily, the whole family is coming in for the week. So, with chaos, will come a nice visit.
daddylove-
Great news! My dad had a Whipple in March and bought us all this time! It has been great! I hope it is a smooth surgery for you guys!
Stacey
My dad tool the Cholestyramine and it helped him greatly. He only took it a few weeks, but the improvement allowed him to be less irritated and sleep better.
Thanks for the thoughts. tiapatty, our hospital offers the palliative care as a precursor to hospice, so there is one person who coordinates care and is informed of all going on with the different specialist. I think mostly they also coordinate pain care, prior to hospice. I need to meet with hospice in the coming months, so I know what to expect, as I will be the one coordinating all of it. I will hop over to see Marion’s post too! Thanks!
Daddylove,
I cannot imagine your dad wanting you to feel guilty. Sounds like he made choices that were “solid” for him and he has chosen the path he wants to take. Do we all agree? Maybe not, but you are there to be his best advocate. We are all here to listen, in whatever way we can help.
best,
Stacey
