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Originally Posted by DapperButch
Jo! I just saw this. I have been wondering how your mom was doing, but didn't want to ask again. Please give us the update if you have one.
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Hi Dapper....sorry, just saw this....
Mom is still in the hospital, and we're actually expecting some more test results today from a blood test that is supposed to indicate cancer...I can't remember the darn name now....CE something, maybe...it's all running together.
Anyway...she'll be in the hospital "for awhile" yet. They had given her some medication that was supposed to help with the nausea, but ended up completely stopping all of the parastalic (sp?) action in her intestine, causing additional problems. That is now clearing, but she still becomes ill and has intense pain from so much as 1/3 cup of jello.
There is a stent from the kidney (that had stopped before) to the bladder, and something is going on there that they can't identify.
There is also another blockage...they've done x-rays, PET scans, CAT scans and something else....but still can't determine what it is with certainty, although they expect it is another tumor.
I'm getting sick of hearing "idiopathic"....which simply means they don't know what is going on and can't identify the cause of the problem.
The membrane that covers the intestines (again...can't remember the name) is cancerous...which is why they need to do the "belly wash" procedure...but can't do that until she's much stronger. They think that the cancer may be spreading from there, but can't be sure....and say that it doesn't usually spread so fast from there because there is little blood flow.
The chemo she's doing now is because of the cancer in the lymph system, and they may have to alter that depending on what's going on now. They probably will need to do a biopsy, but are taking a "wait and see" approach for a few days to see if it's a post-op lesion that may clear itself.
She honestly has wonderful doctors, and is a top-notch hospital....but they're sounding baffled to me.
My sister, who went to help, is making things worse rather than better...stressing out everyone around her and causing drama at the hospital....so much so that the doctor told my mother that he doesn't think she's an appropriate caregiver....and that Mom should come to me when she's ready to go (because her house, being a 200+ year old farmhouse) is not sanitary or warm enough for her to live in right now.
We're falling through the cracks on the "going home" part....Mom can't go to assisted living because of the IVs that need to change every 12 hours (probably for the rest of her life)...can't go home because she can't physically manage without help, especially in her house....and the only other option is a nursing home...which isn't appropriate because she doesn't need that much...she can take herself to the bathroom, she's functional, she can walk, etc. (and also because I have horrors about nursing homes and won't allow it unless I simply can't cope).
So....right now it's a waiting game. The doctors are keeping her in the hospital, trying to figure out what's going on. When she's ready to go home, she'll come to me...at least for the winter...and we'll all regroup and see what's what in the spring.
They told me that, given her diagnosis, the 5 year survival rate is 6%....most of which are the younger, stronger patients...and average lifespan from diagnosis is 28 months...again, with younger, stronger patients on the high end and patients like my mother generally on the lower end. With 50 years of Crohn's disease in her history, her digestive tract is a nightmare.
She has completed paperwork to donate her body for Crohn's research and/or colon cancer research. In a weird way, that's making me feel better....because perhaps it will help them learn enough to help others with these diseases.