Gone Today/Hair Tomorrow & Mask Burning - 04/21/2012

Today was the start of a new "adventure" on  my part.  We went to Super One in Negaunee for groceries and I completely forgot a hat.  When I got out of the car, I asked Ashley what I forgot and she said, "A hat!".  So, we walked in together (she held my hand - I think it may have been for my "mommy support" from her).  The trip was uneventful and I didn't really give it much thought.  When we got home, Kurt told me how proud he was of me! 

I will have to try to get some pictures of my hair.  It's pretty funny because all of a sudden it has come out on the sides and most of the back of my head.  The top is a little fuzzy but not much growth.  (However, I do make up for hair growth on my cheeks and chin - UGH .... hoping that if I leave it alone, when I can get off these meds that will go away again as well!)

Tonight Ashley played in a basketball game and I decided not to wear my hat again.  I guess it's time to just be who I am and not worry about it.  My biggest fear/worry is that it will affect my kids.  I don't want them to feel funny about it all so when I got there, I went up to Ashley and asked her if she would rather I go and get my hat.  She said, "No!"  (If I had to guess, I think she's just as proud of me as her dad today!)

And, last....

When we got home, Kurt decided that he was going to start a fire to burn some of the brush we had from taking trees down last weekend.  My mom, dad, aunt and uncle were here as well so I said, "How about I burn the radiation mask?!"  (Someone had suggested to burn the mask as that is what some people did after having radiation and got their masks; they would have a mask burning party to get rid of the mask - after all, what do you really want it for?)  So, I got out the mask and we burned it in our fire pit!!  (Lots of pictures below...)

One last picture of the radiation mask used for full brain radiation in November/December 2011

I'm standing in front of the fire with the mask

A closer picture of me with the mask

Dropping the mask in the fire pit

Here it goes!

This picture symbolizes SO much - I love it!

Almost gone

The last of the mask before it was gone!  YIPPEE!!!

AND, it's gone!!!!!!!

News Keeps Getting Better and Better - 04/16/2012

It's been awhile since I've blogged... mostly because there is not much going on.  Well, there has been a few things going on like having an MRI last Tuesday and Kurt returning to work last Monday.  He took today off to go to my oncology appointment with me. 

My doctor came in and said "Good news!"  She let us know that the MRI showed no new brain tumors and the tumors that were there have gotten smaller.  I cannot say for sure how many tumors there are because as she told us, depending on which radiologist reads and reports, they might report it differently.  So, the plan for now is to stay on Temodar chemo pills (starts again tonight) and see her again in a month.  I won't have a PET scan until June and MRI probably 3 months from now.

I had a long list of questions:

- GOING BACK TO WORK:  If I am feeling well enough to, she is fine with me going back to work.  I am going to talk to my boss about going back. 

- DRIVING:  I asked about when I could drive again.  It's getting harder and harder for me as I want to go places.... but she informed me that she would say that I shouldn't plan to drive again unless it's an emergency.  She said that while they say 6 months seizure free, they don't know what is happening with my brain and I could have a seizure at any time.  While I am quite bummed about it, I do understand!

- LIFTING:  Funny how I was told I couldn't lift when I had my surgery last May and never really did ask if I could lift so today I asked if there were any restrictions.  The doctor just said that I need to not lift heavy stuff with my left side as I have the mediport in that side of my chest.

- STEROID MEDICATION:  I was hoping to ween off the steroid medication I'm on as I notice some arm/leg twitching, gaining weight/retaining water (UGH) and wanting to eat constantly, being irritable most of the time, etc.  Because I am on a low dose, she would like me to stay on it.

I'm thankful for everyone's support and I continue to think about all of those that I know who have been affected by this horrible disease and are fighting.  (If there is ANYTHING that I can do to help, please let me know!)  I believe!