Life As We Knew It...

Tuesday June 11, 2013

It's been just over 10 days since Mom had surgery to remove the nasty Grade 4 Glioblastoma (GBM) tumor that has invaded her brain.

I've tried to give her & Dad some space to get acclimated at home, and used to their new routine.

Here & there I get an update from Dad.  Last week Thursday's update went like this (In Dad's words):

"Not doing too badly so far.  It was hard leaving the house this morning.  It seems like I have been gone from work for a month.  I was about to leave the house when Mom was getting upset about the cat trying to move around on the bed and bumping into her head from time to time.  She had a really bad headache this morning, so I gave her some Tylenol and helped her back into bed in hopes that she would get more rest.

We have spent the last few days trying to figure out a routine for meds, sleep, etc.  I think we have it pretty close now.  I gave [her best friend / caretaker] the rundown of the routine as we have it now, how the last few days have gone, what needs to be done, etc.  Like I said, it felt wierd leaving the house.

At lunchtime I checked on things with Mom and her headache was gone and she had gotten some good rest.  They were going to attempt to do a little walk this afternoon.

I have been keeping very good notes and records so that I don't have to rely on my memory when we go back to the doctor next Tuesday (the 11th)."

I got another update from Dad yesterday, followed up by a text message this afternoon.  She is currently in the ER again; going to have to stay a couple of days.  Here's that one (again, in Dad's words):

"Well, the weekend overall wasn't too bad.  Your brother came over Friday evening and cut the grass for me and visited a while.  It was a good visit and I am very grateful to him for doing that (one less thing I would have to try to squeeze in). 

Neither of us got much sleep Saturday night - it was just one thing after another.

Saturday during the day, she and [best friend] managed to get her in the shower so that she could wash her hair and get cleaned up.  We have a seat that fits in the tub that she can sit on while bathing to make it easier.

Sunday we got up and had our coffee together as "normal".  She is up only for a couple of hours before she gets tired and needs a nap again.  We did manage to get out of the house for a bit in the afternoon for a short walk.  That exhausted her and not long after getting back she had to nap again.  She slept until almost 8:00 pm and back to bed by 11:00 pm.

She says that everything she puts in her mouth lately tastes bitter, so finding food that settles well is becoming a bit of a challenge.  She seems to be a bit weaker and says that her legs feel like they don't want to support her very well so I, (or someone) has to help her get around the house as she is pretty unsteady on her feet.

Some of the short term memory that appeared to come back after surgery seems to be losing ground again as she was being repetitive with me quite a bit.  I ended up having to cut her french toast for her as she had a tough time getting it done herself.

I'm not reading too much into this as it may be normal for things to appear to make big improvements in the "right after" surgery and then seem to settle back to "pre-surgery" issues for a time.  We have no baseline to measure any of this as far as what to expect, what is normal or otherwise.  We have to be back to see her surgeon tomorrow, so I will address these things with her doctor.

Tomorrow will be a long day and I'm sure it'll wipe her out (and probably myself as well), but some answers would be good to have...  One day at a time."

I got a text message just a bit ago from Dad.  This is all I know, so I apologize for the clifhanger, but AS SOON AS I know more, I'll update.

"We are at the hospital right now in ER.  They did a CT scan and found swelling.  Back on steroids and will be admitted for a day or two to make sure things start coming back."

I didn't prod for more information - I'm sure he's utterly exhausted.  He'll get back to me when he gets a down minute, or when mom rests.

Life as we knew it is over.  This is now our life, dad's life, Mom's life... until it changes again.  Each new day is a brand new puzzle needing to be put together piece by piece, only to start again the next day.

Please continue to pray!  Pray for Mom, the doctors caring for her, pray for my dad, for rest, knowledge and peace.

If you didn't catch this link in my last post, this is the link for the fundraiser.  As well as another place I post (shorter) updates, pictures of Mom, etc.  Mom's Fundraiser

Check here for updates, to donate, to leave a message of hope for Dianne or Dad, anything.  It's a great website!  And please - share, share, share!  Let's get the word out about this nasty disease and come together as family and community to help Mom through this fight!