Thursday, April 28, 2016

Fighting the fog...

I guess it's time to check in since it's been almost a month. Yesterday we returned from a 10 day vacation to Orlando and now I have a case of the post vacation blues. The lack of sleep and eating right has caught up with me. I need a vacation from my vacation. A dear friend says she calls vacations like the one we just had trips and she's right. We had a fun-filled but very exhausting trip! It was far from a restful vacation.

I've definitely learned that when I keep busy I feel better. I have to fight through the exhaustion and nausea and carry on. Eventually the fog seems to clear. Today, I succumbed to the fog though and gave myself permission to go back to bed for a bit. 

"Sometimes we need the fog to remind ourselves that all of life is not black and white."
-Jonathan Lockwood Huie

On our trip, I had a few other revelations:

1. My children NEVER stop talking...EVER! Their brains keep them very busy. They also bicker a lot, but truly are the best of friends. We love them bunches even through the incessant talking.

2. My stamina is not the same, but I can keep moving and keep up with everyone else. I recently got a Fitbit as part of a study and walked between 10,000+ and 18,000+ steps per day. 

3. I need to eat small amounts of food every hour and this keeps me feeling my best.

4. I need to drink a lot of water, especially in the heat.

5. I'm pretty much completely heat intolerant these days.

6. My hair is not going to grow in anymore. I now have permanent bald spots on my head as a result of the whole brain radiation. I'd prefer to have hair and occasionally have hair envy, but I'm ok with it...less shampoo and maintenance. This Saturday, my friend Lauren will be cutting what I do have very short to tame the nest mess. It's only hair.

7. Disney is magical and made me forget (for short times) just how crappy the Big C is.

8. My family takes good care of me and I feel loved more than I ever have in my life. 

9. We should go away every week. We came back to a cleaned up yard, newly painted trim, bags of groceries, and gifts and cards in the mail...we are blessed beyond measure.

We spent the first part of our vacation with my Soul Sister and her family at Universal and then we spent several days in Disney. There were so many memories made and these are just a few.









































My personal favorite.
Little Miss taking a peek.

I was full of anxiety before our trip. I worried about how I would feel, what I would eat, if I could keep up. Overall, I feel like I did it. I accomplished things I wasn't completely sure I could and I had fun doing it. 

Now I just have to fight this post vacation fog, rise up and carry on.

"It's kind of fun to do the impossible."
-Walt Disney


PS These are only some of the pictures, I'll save the rest for another post.

Thursday, March 31, 2016

Rising Up...

There is a birthday in the house. Little Miss is very excited to be turning 9 today. I can't believe it's been that long. Some days I want to cuddle that black-haired baby, but it's so much fun to watch her grow up and see who she is becoming. She is our smart, strong-willed, affectionate, perceptive, creative, and funny daughter who also still enjoys the cuddles. We love her to the moon.




For birthday mornings we usually celebrate with cinnamon buns (not homemade). Today was no different. We got up extra early to make sure we had time to celebrate. All went as planned, however, the buns didn't rise :(

All I could think of was the lyrics to the song Rise Up, sometimes my connections are out there. Rise Up is a song I was recently introduced to by some sweet girls. I listened to it on the way to the doctor and I was then motivated to be able to face the day ahead.  




It's been a couple of rough emotional days in the Sousa house, filled with anxiety and fear. This morning, shortly after 9:00 when my oncologist walked into the room, our fears were alleviated (for now). My scans showed additional shrinkage with the brain mets and all other spots in my lungs and bones, seem to be stable. I am grateful. 

We started our day with flat, dense cinnamon buns, but it's turned out to be a day of celebrating my good scans and most importantly, the birth of our daughter. Regardless of what our breakfast did, we chose to Rise Up anyway.