Wednesday, September 14, 2016

The little things

I haven't updated in a while. Between school starting back, buying a house, and just life, I have been so BUSY!!
Annabelle and Opa relaxing on the couch
For us living with dad and seeing him on a day to day basis, we adjust to the changes in him as the new benchmark of his "normal." When I ask whoever has spent the day with him how he was, the response usually varies from "he had a good day," to "he was kind of tired," to "he was a little off." Those all sound somewhat promising. When people ask me how dad is doing, it's so hard for me to explain without sounding like I'm not expressing the gravity of the situation. Based on where he was. Based on where he could be. Based on where he "should" be from life expectancy estimates by doctors in the beginning... He is doing great. Based on who he is... he's not well. He's not who he was. At least the sustenance is different. He is slower to process, obsessive, impulsive, low tolerance for most things that aren't of explicit interest to him, tangential... the list could go on and on. Dad is still talking, he walks pretty well considering, he is able to perform daily functions for the most part, he recognizes us, and when he is with people not his family, he is very engaging.
Dad and the girls in his white seersucker

At the same time, he has fallen a lot, he is very weak, he is afraid he will die if he goes to sleep so he falls asleep a lot for short naps from exhaustion, he doesn't have much stamina or appetite (other than for ice cream, donuts, and chocolate), and his personality is drastically different. Dad is abrupt, has no filter, is impulsive, and sometimes just mean (combination of medications and tumor location cause this). He still holds his faith in God, and tells us kids how much he loves us. He enjoys having Adelyn tell him "you my favorite Opa in the WHOLE WORLD," while snuggling him and giving him baby kisses. He gains solace and comfort from the group of people that pop in and join in his Thursday night bible study at the house, and tries to do things with his friends that come by. 
More of dad's outings include the use of a wheelchair to help with navigating areas and simply for the fact that he gets tired. We notice that he seems much happier and alert when there are people visiting in the morning and early afternoon (when he has the most energy).
I love my daddy
For me, I vacillate between being sad, grateful, and angry. I want my dad back. Some days I don't know the person in the body that I barely recognize. Sometimes who he was before the surgery shines through and I try to grasp and hold on to that with every bit of my being. 
People say, "spend as much time together as you can," "video him as much as possible" "take lots of pictures." It's hard to explain that I know it seems to make sense, but I often don't want to. I want the pictures of my dad with my girls growing older to be like the ones when they were younger. So often the video footage and pictures highlight this horrible journey and what it has done to my dad. I want to have strong memories of when he was healthy and I want my girls to think of him like I do. I look at the pictures and videos I have from after the surgery... They make me so sad. I cry. I cry the most, and most frequently, when I look at the picture of my dad and me in his hospital bed before he went in to surgery. He has his trademark smile, with a hint of apprehension. It was the last time my "real" dad was here. It's the last picture I have of him.

We are so happy for Marky and Wendy!!!
When I look at recent pictures and videos, it's like I'm in a movie watching someone else's life sometimes. Watching someone else's dad suffer and the family scared and trying to hold a good face. Maybe it's just because I don't WANT it to be me. My dad. My family. He's too young. There are too many grand babies that need to meet him. Too many college graduations he needs to attend and weddings at which he needs to cry. There are too many recitals he needs to see and boo boos he needs to kiss. Why? Why my dad? Why my girls' Opa? Nothing gives me closure or answers. Nothing
makes me feel better or confident in the fact that our dad was chosen for this journey. Nothing. I've always had a selfish streak in me. It comes out strong with this. I selfishly want my dad.
This article explains better...

All of the grands!
We had no idea what was going to come out of the surgeon's mouth when he talked to us after the surgery. I had no preparation for the words and few statistics I was about to have to stumble over through sobs while I talked to my brother and sister-in-law, who were on a vacation at the time, and tell them what the doctor had just shared with us.

I wish I had documented every single silly song dad sang for my girls, had video of them reading together, had video of him at his school teacher talent shows. Many of these moments I have now in my mind. They are clear and full of detail. I don't want them replaced with what we are living now. I don't ever want them to fade. But they will. My memories will fade. They are only mine. Stored in my mind with my personal and
I think they are excited that it's a BOY!
internal vision and attention to details. Even if I remembered forever, my girls won't have them, and can't show them to their kids. It's all in my mind. One day, my mind may be like dad's. Who knows what will happen. I just want something tangible to document my memory and to immortalize my dad.

We have been looking through old family videos. Dad seems to enjoy them, but I cant tell how he feels about them. Does he look at them like he would as any 60 year old watching his 35 year old self? Does he see himself singing, dancing, being silly with his kids, and long for that so that with his grandkids? Does he see Videos of himself and me and think of Mia; himself and Katherine and think of Annabelle and Adelyn; himself and Marky and think of what it would be like if he could enjoy and play with baby Bobby when he comes in January. Does he watch the progression of his children and wife in videos and think about the progression of the next generation? Does he have a twinge of sadness that he may never meet Katherine's kids?
Lately I've struggled with happy thoughts around what is happening. I try to laugh with dad and enjoy the moment, but it is so, so, so hard.

Marky, Mom, and Dad
Despite the decline, we have gotten good news lately. The results from dad's MRI from Monday showed everything stable and looks just like the July MRI. Dad hasn't been able to wear his Optune cap much since Mackinac, so mom thinks this may be why it's just stable and not getting smaller again. Also, the EEG showed NO SEIZURE ACTIVITY! We were very happy with this as it means we are able to begin weaning some of the anti-seizure meds. We think these are the drugs that make dad in a bad mood some times and are really zapping his energy.

Since I last wrote, Marky and Wendy have moved back to Memphis, and we found out Friday that they are expecting a baby BOY!! After three granddaughters, everyone is happy to have a boy. I'm ecstatic that dad will be able to see his first grandson, who will also be his namesake: Robert Andrews Bolding, they will call him Bobby. If you ask Annabelle and Adelyn, they will tell you his name is "baby Bobby." They are excited to have a baby cousin, though Annabelle was miffed at first because "[she] wore pink" at the gender reveal. Lol. She seems to be over that now and is talking about how she will rock him and show him how to walk. I think the girls will be great big cousins.

Thank you all for your continued prayers, words of encouragement, comforting touches, and infectious happiness.  Don't forget we still have Dr. Bob shirts on sale and the proceeds will fund upcoming care for dad. These ship around the world. Check the site, they regularly have free shipping.

This is a video trying to give some explanation to the gravity of a Glioblastoma diagnosis. It's not like other cancers. There is no cure. Standard treatment is not promising. Duke's Polio vaccine trial is one of the hardest to qualify for with some of the strictest requirements, no, my dad doesn't qualify. But thank you for trying to relate and be helpful!

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