We went back to Duke last Monday. We saw the NP first and you could tell she was very worried. My mom is in such bad shape. She is exhausted, very swollen, lethargic, speech slurred, dizzy and not always cognitively intact. She did her exam and then left to get the neuro-oncologist. Three of them came back. The first thing the dr said was that her brain looked "beautiful". This was a complete and utter shock to all of us. None of us thought the treatment was working at all.
She thinks that the tumor location and treatment combined has destroyed my mom's adrenal gland. What does that mean? Basically the adrenal system give us all the desire to get up and go. To fight. To eat. To want to live. All of this is gone for my mom. They asked us to give them 2.5 weeks to try to get it started again. They put her back on steroids, increased her Ritalin, and added an appetite stimulant. At that point, she wasn't eating anything. It got a little better in the days following the appt, but I'm not sure anymore.
Hospice came to the house the following day. It is such a hard situation, but I think that we need it. My dad and grandmother need help. They need someone else to take some of the pressure off. He needs a break. he needs to not have to be the caregiver 24/7. It was time for him to become her husband again.
She is more awake than she has been in weeks and maybe even a month. I was feeling hopeful last week, but tonight was BAD. I went in the bedroom (she is now in a hospital bed in my childhood bedroom). Her eyes were open and I could see that she had been crying. I'm honestly not sure whether she completely understood what I was saying or if she really knew who I was.
I honestly don't know what to ask for. I want my mom to be better. I want her to be comfortable. I want her to not be in pain. I want my child to remember my mom. I want to comfort my dad, but don't know how. I want to take Ma's (my grandmother) pain away. I want to go to sleep and wake up 6 months ago to be able to tell her how much I love her.
I tell her every time I see her, but I feel that I lost so many opportunities to tell her when she was well. I do know that I will never let this happen again and I hope and pray that everyone takes that advice. Tell everyone you love how much and often. I want my child to grow up in a household where we tell each other every day how much we mean to each other. Now don't get me wrong, I never doubted that my parents loved me, but we were certainly not an outwardly loving family. I want something different for my child. I don't want her to only hear that if I am going on a trip or if something bad happens. (I think I am just rambling now, so forgive me)
Please tell everyone important to you how much they mean to you as often as possible. Please pray for healing for my mom. Please pray that if He doesn't heal her on earth that He gives us the strength and grace to help her go. I just want her to be pain free and as comfortable as possible for as long as possible.