A slight change of plans. I am planning on NOT getting the ileostomy reversal next week.
The medicine I've been on since getting out of the Hospital are kicking in and slowing the plumbing down. This is a good thing. The primary reason Dr Shoup wants to do the reversal is getting my plumbing back in tact to slow down output. If in fact it all slows down and I have no diarrhea, then my nutrition and weight gain should kick in. HOWEVER, one of the biggest adjustments to getting colon and bowels re-hooked is a constant diarrhea. So much so that Depends is a must, and you are a slave to the bathroom all day. For the lucky ones - 40%? the adjustment is 2-4 months. For the majority, it is 9 months to beyond a year.
That possibility of me being in the majority defeats the purpose of reversal. IF I continue to have high output, at least it's in my "pouch", doesn't cause me pain and I can retain my current quality of life. Now, my digestive track is short, so things move quickly anyway with this ileostomy, but I'm of the mindset to put this off until after chemo and any surgeries, so I can deal with the side effects singulalry, instead of in the midst of chemo etc.
Radiation Therapy - Talking with my oncologist, she wasn't sure why an appt was set up with radiologist, as it's not for SURE they would radiate me. I'm assuming it's just a meet & greet and consultation. I have tons of concerns on radiation - collateral damage to nearby organs, brittle bone syndrome, etc... Update: I just spoke with the surgeon, and she's fine with me waiting on reversal. She thinks when I get liver resection, she'll reverse it then. Also, she told me that Radiation isn't what her and the Radiologist want to do. Dr. Lo, my oncologist is the one that is Pro-radiation, to boost the chance of non-recourrence in my rectum/colon. Dr. Shoup, the surgeon says that there is no data that clearly shows preventative radiation prevents reocurrence. I'll consult with Dr. Benson in Sept on these items.
Liver resection - while it's still great news that surgery is a possibility, the oncologist stressed that because there are tumors on both lobes, it would probably be surgery on one of the lobes, with other therapies for the other lobes. Again, can't cut up all lobes of liver or I'd have no liver.
So that's all I know for now.
My current issue is to get my portacath site in line- the rash is slowly going away but the soreness and pain upon touch is not in the slightest. Wednesday they will see if nurse can access port, if so, I get the full chemo, otherwise, probably just the Erbatux again. Who'd ever believe they WANT to get back to chemo?? It's an odd world we Cancer folks live in, but there it is.
Blessings to all my revered praying angels
XOXOXO
Peggy
Peggy,
ReplyDeleteSo the saying is true…never a dull moment, wow how things continue to change for you moment by moment. And yet… a lot of what you wrote sounds very positive. I think you made good decisions and it seems you have a clear plan in mind and that has to give you some peace. You have clear prayer requests too (that’s a good thing), I will pray hard the nurse is able to access the port and your pain subsides.
I continue to thank God for your healing, each day I hold a picture of you in my mind, and you’re whole, healthy and happy. I pray the medicine continues to work its magic and you feel a little better each day. What I love about you Peg is you can always find at least one thing to be grateful for and your ability to filter what life gives you through your unbelievable sense of humor. Keep it up girlfriend and if you ever need anything and I can help just give a shout and I’ll be there.
Mary