We finished radiation this last Monday! It was nice to be done, as there was growing concern each treatment as David's cognitive health began to decline rapidly. Most of the concerns come with his word finding and him becoming easily agitated at most anything. After help from friends and David's local oncologist we convinced David to up his steroids and over time I have seen small improvements. Again, these are very small, but I will take it.
I made a call to MD Anderson and the decline could mean two things. One, it could mean swelling of the brain. Which is caused by radiation. With the increase dose of steroids the hope is that the swelling will go down and that David will regain some of his cognitive strengths. The other concern would be that the tumor is growing. We won't know which one until the MRI at the end of the month. It is too soon to do an MRI as when you do radiation your brain is all lit up, ( best way to explain it). You can not tell the difference between what is tumor and what is swelling. But, the good news is, if tumor growth ( which I have no idea how it could grow any more) David would have headaches. He would also have decline in mobility. He has NONE OF THIS! Thank the Lord. All of his symptoms seem to be in line with swelling.
We have had a busy week in a half with a house full of guests. I got to the point last week were I needed to call in help. I realized I couldn't keep it together for the kids, life and David. Trying to juggle it all and also be the best care giver for David became increasingly difficult. It has been so hard to care for someone that has become opposite of everything your husband ever was. I thought I had a good grip on things and then it was one evening when I prayed to continue to surrender myself to this situation that God laid it on my heart to call in the troops:) After a quick phone call, David's parents, brother and good friend came to spend a few days with David and our family. Boy did it help! My biggest fear is David feeling alone. With the exception of going to lunch with friends the rest of his day is hanging at home and resting. I know that if I was the one sick it would be so hard to see my spouse out living life normally and realizing that you can't. So with the help of David's family and friends they surrounded David with love all weekend. Just hanging out. Not much was needed, just being there. They even got the chance to take David hunting and spend some time with our Waco friends. It was so nice to have them here and also so nice to have them help me get some of those handyman jobs done in the home, hanging pictures, moving things to attic, changing light bulbs you name it. After Grandparents day they left and then my dad arrived a few hours later. He has been A-MAZING too. Spending time with David, helping with the kids and today him and I spent 5 hours cleaning our whole garage and helping me gain an understanding on what all this stuff was?! I never realized David had SO MANY TOOLS! I have a better understanding on what all this stuff is, but what it is used for???? Have no idea. I think my husband may be a hoarder when it comes to his tools and fun projects:))
We have had a lot of people continue to ask how are we doing this? My answer...I have no idea. Really and truly I don't. Each day has become harder. I wake up in the morning and wait for the first words out of David's mouth. Whatever those words are will determine our day! If he is with it and cognitively there, I have hope! If he wakes up and says something that makes no sense, fear creeps up on me and my day does not begin as hopeful. Each day is different, each hour is different.
This week we had a new visitor join us. Well, join me. Some might think this is crazy, I even think it is crazy. But, lately when I am in the toughest situations, explaining to David why he can't drive, making him take his medicine, or just agreeing to something that makes no sense so he doesn't get frustrated, there is the David in this picture below right next to me. Dressed just like this and looking just like this. He is sitting there encouraging me. Telling me, keep it up Dana. Don't let him be stubborn. You are doing all that you are suppose to. Don't give up. Remember, this is not him, this is what the tumor has done to his brain. It will get better. Seek your faith. He is CONSTANTLY encouraging me and the whole time he never stops smiling:)
This all started when we had a rough night with Audrey. I had went to parent orientation at the school and left the kids with David and his parents. When I got home, David's mom explained to me that Audrey and David had a little argument. David was telling Audrey she had to eat all her mushy blueberries! Well, who eats the mushy blueberries? What he was trying to tell her was you have to eat all the blueberries but the mushy ones, but he just couldn't get it out. After them going back and forth , David finally said Audrey what do you want me to do ? She said daddy, I just want you to go to bed. This was hard to hear when I got home. And because David's emotions are not in tack like yours and mine he didn't really understand the hurt in her voice, which can be good he is shielded from this. Because, I know it would break his heart. So, I went up to her bed to talked to her and what an amazing little girl....
Me: Audrey what happened tonight?
Audrey: Daddy wanted me to eat the mushy blueberries. I don't ever eat the yucky mushy blueberries. His medicine makes him so grumpy
Me: How does that make you feel that he is grumpy?
Audrey: Mad
Me: It makes me Mad to girl and it makes me Angry.
Audrey: Mommy, will his tumor and brain cancer go away?
Me: I don't know Audrey
Audrey: What happens if it doesn't go away?
Me: Then he will die
Audrey: I don't want him to die
Me: I don't want him to either. But, you know what happens if he dies?
Audrey: He goes to heaven
Me: Yes, and he waits for us. And we will see him one day.
Audrey: Well then we have a problem
Me: What is that ( because my lord which one can she pick, we have so many)
Audrey: There is no way you can take care of Parker and I on your own
In my head... Oh girl do you know it. I desperately need your daddy!
Me: Yes, it will be hard, but lets try a new game. Let's every night tell our favorite memory of the daddy we remember who was not grumpy on his medicine. Mine is when he would come home from work in his scrubs and you all would hear his truck and start screaming Daddy Daddy! And he would get on his knees and say Audrey and Parker and give big hugs!
Audrey: My favorite memory is when he would then spend time with us tickling and playing while you made dinner. He was always so happy!
And that was it...the end and we have done our memories every night. And since that night, my husband David, the one smiling has not left my side and been there encouraging me every step of the way, my own special and favorite memory that keeps me going every morning when I wait for those first words.
Side Note: ( when i concluded this tonight, David walked in and wanted me to read the blog. I was hesitant and scared, but I did it. He had tears and cried like I have never seen him cry. We cried together and my David was there. He said I feel so much love from so many people. I don't feel myself getting better, but I feel love and that is what matters. I feel it in my heart and my soul from God and all these people. I told him I am not giving up hope and he asked that I and we didn't, but this sucks. i thank God for our moment of vulnerability tonight. And my dad being there through it, both of us encouraging him because for so long he has been the one encouraging us, he is so brave. And I am so proud to call him my husband).
He is faithful,
Dana
