highsmith
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Sharimay,
Welcome! Welcome! Welcome! This is a fabby family and very loving.
Read, ask and take in all you can. It is thrilling to hear that the lymph nodes were negative and that you are on a great road to recovery!!!! Be positive and do everything you can!!!
best,Stacey
Sunshinecaregiver-
Welcome! Sorry your dad is going through this. In addition to asking about meds, Make sure your dad is hydrated. My dad has trouble when his blood pressure dips. Even with chemo and palliative care, there are good days and bad…
Stacey
Lainy,
What a ride indeed! We have had two PET scans the last two months, but I bet you are right. Another day, another scan. Some days I wonder if a dozen CT scans, six MRI’s and two pet scans in six months is helpful!
Linda-
I am so sorry the Mayo referral was a bust. I hope you find someone to take care of your discomfort. I think that is paramount to everything else.
I never thought I would be strategical about how to ADD as many calories as possible to food! Sour cream! Ice Cream! Whole Milk! Full fat and fatty cheese! Bring it on!! My dad lost 40 pounds up front and then gained 25 back before he has started losing again. We are down 12-13 pounds since his markers and liver function have jumped and I am doing my best! If I could transfer 20 pounds, I would!!! Like Gavin, I try and overfeed my dad and let him decide how much he needs to leave behind. I also go to the local bakery two or three times a week to try and entice him.
I need to check with my dad’s nutritionist, but there is an Ensure type drink, Dessert, or something, that is an amazing amount of calories but does not cause the problems that an all fat shake would…I have a pyloric ulcer, so too much fat makes me puke on queue! I understand how hard the balance is these days.
My dad, too, has constipation issues. We just spent three days at Barnes with an official diagnosis of “full of shit”! They did a colon cleanse and it did nothing, so they have to do a high picc enema. I was spared the details, but it worked.
My dad now takes Colace and Senna and “clearlax”…17 grams of Miralax in gatorade. The combo works, as he has had senna trouble in the past. I think finding the right personal combination is the key…
good luck
Schrums4-Maybe it is time for stronger Prilosec too? My dad takes prilosec 20mg in the AM and PM. It is way more than the standard dose, but his has helped on a couple of different things.
Good luck this week!
Does Jeff have enough weight to spare a few pounds? My dad lost a lot and it takes time to eat again. The surgeon or OPMC should be able to refer him to a nutritionist if need be…there is something called Gem? (I will look it up) that is a high calorie, but good for low fat diet, shake that is mostly protein. Also, there is a 12.5 mg time-released Ambien now. Have you tried that? We have had to go from 5mg to 10mg to the time release but it is working. There are a few other sleep aids out there too! Check into them!
Cathy-I agree! A thousand bed hospital and so many seem like they have known you for decades! I never presume anyone knows our story and am always amazed! The best one so far is that Dr. Linehan rounds with dozens of residents! I mean dozens! Well, my dad need reconstructive surgery this summer and residents switch teams on July 1st. We were in the hospital in September and these two residents came in and lit up and the woman exclaimed “You are alive, you are pink!” and then clasped her hand over her mouth in fear!!…it was really very sweet, as we did not know if he would ever get out of bed at that point. We were there again Sunday to yesterday and saw the residents again! I feel like they should be invited to Thanksgiving dinner!!
My dad, Phil, has a very small appetite and needs little food. He is 6’2 and always has been a big guy (250+). He was down to 215, his playing weight in college, after surgery. It will level off, but the full feeling is normal. He takes 100mg of colace twice a day and Miralax (17mg with fluid) at night. He also eats small meals at all times and supplements with Ensure. Part of his whipple removed a portion of his stomach and duodenum, so we knew this would be the case. He takes Ambien nightly and does have night terrors every once on a while, but I wake him up and he usually sleeps well the rest of the night.
Cathy,
My dad had his diagnosis in West County also! We just happen to fall in with Crippin and Linehan and Tan(oncology). We saw Chapman twice, but we already knew a transplant was likely not on the table (Linehan even stopped the eight hour surgery and had Crippin come in to make sure that he was not doing anything to decrease our chance). I have met Dr. Earl too!! I cannot say enough about the Barnes team. My dad has always lived in the St. Louis area. so it was an easy decision, although we considered moving to MD Anderson. My dad got sick very fast, so we kept him with us by not getting more opinions than we did, and were lucky at that. I have to smile these days when one of the doctors comes in and says “I have been here for three hours, but have been trying to review the last seven months of hospitalization”…It is a compliment, as most folks would not have made it to this point…it took a long time to smile about that though…my dad still seems to spend three or four days a week in Barnes, but I am used to it now! I use the valet at Siteman and don’t even need to give my name ,we just nod and move on…
I am glad your husband is doing so much better! Around here, coming hoem with one tube is a blessing!
Hooray for the pathology report. Sounds like the road to recovery is starting to roll out the welcome carpet!!
Adrianna-
My dad has CC and had a tumor like your mom’s. My dad is also being treated at Barnes, St. Louis. Dr. Chapman is well knows, as is my dad’s original GI surgeon, Dr. David Linehan. They are top ten in the US for liver transplant and the team surrounding them (for surgery, oncology and reconstruction) is simply amazing. Dr. Jeffrey Crippin does many of the transplants, but it will be a long road if you get there. My dad does not qualify for a transplant because of some other issues (he had a colon resection last year because of a different tumor). I know first hand how hard it must be to take all of this in at once, especially when it is a parent and now you are being thrust into the caretaker role. Are your older sisters still local to your mom? Are you close (I mean live close) to your mom? Feel free to email me if you have questions about the doctors at Barnes.
best wishes,
Stacey
