So - this is from an email to girlfriends sent out shortly after we knew the next steps, last week.
The latest is need for REST - get off my bloody stumps, my poor feet, and rest.
We met with Dr Trudeau last week April 25th, to review the hospital visit, the chemo effects / efficacy, etc. The chemo, Xeloda, did a lot of damage chemically to me. And now we need to let it abate. Frankly, Dr Trudeau was alarmed by my physical state. Which alarmed me too. Here are the issues:
- Hand and foot syndrome - sounds lame, but it is like red hot sunburn - chemical burns, basically, to the feet and hands. Hard to grip, open, and hold. Hard to walk. Sore. If it gets worse, it doesn't generally go away. So we need to avoid.
- Chemical burn - skin rash on face and nose.
- Thrush in my mouth. like the plague, man. Gross. but this is getting much better.
- Serious digestive issues - gas and bloating, and constipation. I look 6 months pregnant, it's awful. it's kind of humiliating too.
Mum took me out for some new comfy but attractive blouses and new pants. Something normal to do. However, it took about an hour since I move like a snail - hobbling along on the stumps!! It is funny, getting paced by your 70 yr old + mum!
Ironically, the spine - the original reason this whole thing got rolling back into the hospital in response to pain- is fine. Critical piece of information - The cancer is no longer in the spine. The spine is now just full of broken bone bits. Like cookie crumbs, which will eventually get cleaned out if we go the surgery route. More on that in a second. The pain is managed now, and i am in fine shape on that front. or back. hah.
Dr Trudeau is concerned about elevated activity in the liver - found through blood work. We have a CT scan (tomorrow May 2nd, 3:15 pm) to see if the "elevated activity" in the liver is more disease come back or the same ass-kicking chemotherapy damage as the rest of my body took.
So, bitter sad tired pissed off me asks, does it ever, ever fucking stop? This is why I hesitate to write, cos I am afraid of it. I don't want to talk about it - I dont' want to put it out there out loud. The disease could be back. If you see me, let's talk about ANYTHING ELSE. Please. Seriously. Even hockey.
Results back on CT May 9th with Dr. Trudeau. We will know then - and can plan out next steps - chemo probably if it is disease. Same R/R plan if not. But we don't know. This also means a long recovery surgery like discussed with neurosurgeon will have to be postponed till the liver is dealt with, if it is disease. So the surgery is in limbo.
As is most of everything. I rest. I hobble around. I cry. I am mad. Very mad. Tomorrow, I will go to the CT scan with MB.
And that's all she wrote! xoxoxoxo
-----------OOPS NOPE IT AIN'T!
Just had a visit with the nurse. Not my regular guy, but perhaps more thorough. He says we need to do something about the bloating - ie. pregnant look. I need to call Dr Irene my palliative care doctor tomorrow, since the body is building up fluid inside, and it has nowhere to go - hence my legs, all the way from foot to the groin, are swollen - and the abdomen has no room left for liquid retention! nice.
He is concerned but not in an overly worried way, that the fluid build up will get around the lungs. Not in the lungs but around them. he says i need to get the liquid drained - the drainage procedure is called paracentesis - and we should get it done soon - and the swelling will come back but again one of those things the pain meds are causing etc so when it stops, this should too -http://www.webmd.com/brain/paracentesis-17042 - it is a quick in and out thing- with a big fucker needle into the belly.
He also went through the drugs i am taking and indicated side effects - and what can be removed in his opinion. Apparently hydromorphone is 7 x more potent than morphine. who knew.
So will be calling her tomorrow and discussing this - it is so uncomfortable. No wonder I am so cranky.