Tuesday, May 1, 2012

Update

Hi all. Kate here. I have received a number of emails and notes asking for update - so message received. Here it is...I have a lot to think about and want to get it out, but have been too flaked out.  It's tiring to write and I need some time to process this all. The brain is working OT to stay afloat. Your patience is appreciated with my grumbly nature. This is where the warrior spirit is taking a mental hit - I am just too tired. 


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. 












6 comments:

Anonymous said...

Mwah
I can come talk about hockey, but would prefer food, real estate, stupid neighbours, even weather...CD

Auntie Cake's Shop said...

i would enjoy all those topics! and the conversation would of course, last longer. ;0)

Anonymous said...

Kate & Mike

To say this latest series of events "sucks" is probably the understatement of all time. Thank you for letting us know just what is happening. I think we all appreciate how hard it is for you and Mike to keep us all updated but we are reluctant to add to your already considerable load.

We simply want to know just how you are all doing.

Every morning I check your blog to see just what is hapening for you and hoping that there is some good news on the horizon.

Please do not even think of not being cranky (totally pissed off to the point of physical violence to innocent passers-by seems a pretty measured response from my perspective).

Rest, recover your strength and gird your loins for the next battle (cause clearly the MMA folks don't have as many fights lined up on their rosters as what seems to have been slotted into your game plan).

And watch those comments about slow 70 year-olds - I can still kick your ass (well I guess at this point I would have a bit of an edge). LG

PS - if CD's wants to talk about "stupid neighbours" - it better not be me....altho it likely is....!! ;-}

Haideh said...

CD: Don't get me started on weather! I am off to Tobermory with a close friend who is visiting me and all I see in the forecast is stupid rain! And, don't worry Kate - any conversation around hockey and Maple Leafs won't last that long. They sucked!
With love XOXO

alleycat said...

As you know, I am well qualified to talk about hockey, baseball, soccer, etc... and now especially beach volleyball! ;) I can also amuse you with my usual antics... or happily drive you where you need to be. Just let me know which of the above you need... or food... I can do food too...
Hang in Kate + Michael et al...
Loving you,
Erin

Anonymous said...

Thanks very much for the update Kate, they are always so pored over by us and I know they are not easy to write for a great many reasons. I hope so much that your symptoms ease and abate and fix themselves, and that all is clear and clean where it needs to be.

Topics of discussion: how to get poppies to grow (plant seeds now or wait till fall?) Can peonies be split once they start to sprout? What is the best recipe for beef stroganoff, and by best, I mean the one the ladies at my high school cafeteria used to concoct? I think that involved sour cream and barbecue sauce, but I may be wrong. And how does one make buttercream frosting not too greasy or sweet, add milk?
Thinking of you so much.
xoxox Tiina