Update on Renee

Hi everyone, this is Eric writing for Renee.

There’s been a lot of people asking how Renee is, and we thought that updating this blog is probably the best way to get the information out there.

Renee has been having a lot of up and downs lately, but the constant has been a very heavy fatigue and headaches.  She can’t really focus very long, and staring at a computer screen to type really hurts her head.  She sends her regrets on not being able to talk, write or be around for everyone, but appreciates all the well wishes, thoughts and prayers.

The past week or two we have been very worried that there was more tumor growth due to all the issues she was having.  But then she had a MRI on Friday Dec 27^th, and then we met with the Neuro-Oncologist on Monday the 30^th.

Prayers were answered, and the latest MRI shows that the swelling is coming down, and there’s nothing that indicates an active tumor.  The most likely thing is necrosis from the surgeries and the multiple radiation treatments to the same area.  It seems strange to us that it would show up as symptoms so long after the actual treatments, but we will take necrosis over tumor any day.

That being said, it still doesn’t explain why Renee is feeling so bad still, or how to give her any relief.  The only thing that seems to help her for now is lots of rest while her body heals.

The current plan is that since the swelling seems to be going down, she’s on a taper to get off the steroids, which hopefully will help with some of the fatigue.

Renee had a PET scan planned for before Christmas, but the machine broke a half hour before she was scheduled.  So, now she has a PET scan over her whole body on Thursday to make sure she’s still clean everywhere else, and then we’ll meet with her regular Oncologist on Friday.

Assuming that her PET is clear, and that she’s not improved from being off the steroids, there’s still the possibility of being on Avastin to help with the inflammation in her brain.   It would be a IV drip for her, but no side effects that would make her feel worse than she does.

In the meantime, she’s still on her oral chemo, as well as pain & nausea meds to keep everything in check.  Her spirits are up and down, but with the MRI news we’re all a lot more hopeful about turning a corner soon.  More than anything, she’s just tired of feeling tired & hurting, and ready to get back to feeling like herself.

We’ll update things here as we get more information, and thank everyone again for the thoughts and prayers.

We wish everyone a happy new year and may 2014 find you and yours with an abundance of Joy and Love throughout the year.

Dr report

This isn't as much information as I had hoped and prayed for going into the meeting yesterday but, it is what it is

He bumped my steroids in hopes of getting the swelling down saying that it was concerning that I had been on steroids for a week and I still have these headaches

Still no one knows if it's necrosis or tumor as nobody will be able to tell without surgery

I do have a pet scan on the  also Monday

Until then I am just taking it easy and treating it like a massive migraine

I know I know there is more I wish I I heard, I wish I had a plan. 

More than anything I want my head not to hurt

The plan as I understand:

Up the steroids this week if that doesn't bring it down(swelling) trying Avastin (different chemo) which could possibly get rid of some of the necrotic issue if that doesn't work surgery and then go from there so there's a lot of ifs, ands or buts to rule out stuff 

Best case-dead swelling tissues (yes I will take it)

Worst case- uh whatever we have lots more to try

I am tired of being tired, of hurting and not knowing...but such is everything 

Messy house + killer head aches = no good

Have I mentioned how ready I am to have my house put back together??

If not, this is my official announcement – this house is driving me crazy.

I need to hire someone to just get this crap done, but I want someone who will just do it  without  asking me to make decision– I know, NOT an easy to do.

Pretty much I want to move into a house that is completely organized. 

I feel like I am on the verge of donating everything and then see what we really need – not much is what I am seeing.

I had to get an MRI Tuesday because I am having horrible headaches that are making me feel sick to my stomach.

I found out yesterday there is something there, but they think it is just dead tissue.

All I know at this point is my brain dr is looking at it all and I will get any appointment with him hopefully Monday to figure out next steps.

Until then I started back on the roids yesterday – oh boy! To try to make the swelling go down and make these d*mn headaches go away.

I will let you know what happens next.