Wednesday, March 23, 2016

Lisa updates

March 8th
Lisa update. Unfortunately quite a bit of her hair has been falling out the past several days as a result of her radiation therapy. She now has a bald spot on her left side. She doesn't mind it though, and thankfully Brooke Wilson helped her part her hair in a such a way that you don't notice it. Lisa keeps getting worse mentally each day though. 
She struggles more and more with performing her daily tasks. She essentially needs help with everything, but her independent spirit tries to do them anyway. This weekend she was trying to do something on her own unsuccessfully, and I stepped in to help her. When she recognized her inability to do it, she broke down crying. She was saying how she hates not being independent and cried for a bit. This is a big deal. Ever since her first tumor surgery back in January of 2012, she has only cried three times. One was back in January of this year when she had her massive seizure. One was on Sunday when she recognized her lack of independence, and the other was tonight as she offered the prayer at dinner. It's difficult to see her cry when she has been such a rock over the past four years.
Another unfortunate side effect of her advancing tumor is that she will get mad at the kids for no reason and will lash out at them. I have to play mediator and take Lisa into another room. Thankfully she still responds really well to me and will calm down instantly when I talk to her. It's sweet to see how much she still loves me, trusts me, and believes in me. The kids are confused at times with her reaction, but I've been able to help them understand that Lisa isn't herself, that she still really loves them, and that when she does lash out that they should just go into another room.
But, this isn't solely a sad and gloomy post. There are still funny and tender moments with her. My mom, Cerola, was sitting with Lisa today when her hospice nurse came by. When her hospice nurse was working with her, Lisa turned to my mom and said, "You did a wonderful job of raising Cody. He's such a great man." It made my mom's week to hear that from Lisa. And for the record, my mom did a great job of raising me. I mean really, I'm quite amazing now. The proof is in the pudding. Have I mentioned how awesome I am yet?

March 10th
Two funny Lisa stories from yesterday. Last night after I put the kids to bed Lisa began to tell me how the kids get her in trouble all the time and tattle on her. It was so funny to see her talk about it, like she was a 6 year old complaining about her siblings. She said that they accuse her of wandering off and getting into things that she shouldn't. She was adamant that she does not do those things, and said the kids are just being mean to her. 
Then she woke up in the middle of the night and asked me if she could go downstairs to hang out with Tracy and Rissa, and if I could make her a sandwich for lunch to eat with them. She didn't believe me that it was the middle of the night after much convincing, so I finally conceded and took her downstairs and made her a sandwich. When Lisa wants a sandwich, she gets a sandwich!

March 14th
Latest Lisa-ism that makes me laugh. She seems to think that I'm the one about to die and is worried about being prepared for it. She asks me questions like, "You haven't changed any of your passwords recently have you? I won't have trouble accessing any of your accounts?" Or, "you don't have any charges coming out of the bank account that I'm unaware of do you? No surprises after you die?" Another, "maybe we should get a pill dispenser that can hold up to a month's worth. And you should probably teach Tucker and Aubrey how to help me with all of my pills once you're gone." And my personal favorite, "You don't have any girlfriends that I'm unaware of do you? I don't want any ladies coming around after you die." For the record I haven't been on a date with another girl since my first date with Lisa 14 years ago. She's been my one and only love since I met her.

March 21st
With Easter coming up this Sunday, we watched the Mormon video "He Is Risen" with the kids tonight for family night. Easter is much more meaningful for me this year as we near Lisa's final days before she passes away. What a beautiful message this is. It gives me so much peace and hope.

March 23rd
Update on Lisa. After Lisa's tumor had progressed so rapidly at the end of January and the beginning of February, we weren't sure if she would be around for more than 3 or 4 more weeks. About mid February her physical deterioration seemed to plateau, but her mental deterioration continued, albeit slower than what we had been seeing. Over the past month physically she had been about the same until last week. Over the past week I have been seeing more deterioration, at a more rapid rate too. She now gets tired really easily. She will be awake for about 3-4 hours in the morning and then has to take a nap. She'll sleep for 2-3 hours and wake up fairly refreshed. Then after dinner, she'll start getting tired again and typically go to bed for the night around 8:00.
The biggest challenge has been her mental deterioration. She has a few good moment each day, but for the most part really struggles. She doesn't know what day of the week it is, what time of day it is, and now even has a hard time with knowing what room in our house she is in. She will get up to go to the bathroom and will end up in the garage, the office, a closet or even the kids room and not understand what's going on. Her general awareness is shot. Also in addition to having terrible short term memory and struggling with her general awareness, she also is starting to lose her long term memory. She forgets how many kids we have, forgets aspects of our life together, and even fails to recognize people in photos, like her grandparents, for example.
She also struggles to follow simple instructions and commands. I'll ask her to sit down at the table when it's time to eat and she'll say, "if that's what you want me to do." And then she will continue to walk around, sometimes circling the table. It appears as if she understands what I'm saying, but her brain is having trouble relaying the message to her body. I often have to lead her by the hand when we go from one room to the other or when I need her to sit down at the table for a meal or else she struggles to complete the task.
Another example of this is when I'm getting her dressed/undressed. When I put her socks or shoes on I typically tap the foot I need her to raise. Verbal commands don't help as much as actually touching the foot. Well, this weekend while I was putting on her left shoe I would tap that foot and ask her to raise it. She would raise her right foot, and I would then tap the left foot and say, "no, this foot. Your left foot." That sequence was repeated a few times and then she looked at me and said, "I'm not doing the correct one, am I?" She knows which foot she's supposed to raise, but her brain can't relay the message to her body.
She tends to wander around the house because she gets bored easily (can't play games and forgets what she's reading or watching easily). While she wanders she has thrown many things in the trash like bills, checks, the kids homework, and even an ipod. I have to rummage through the trash each night to make sure she hasn't thrown anything away, and whoever is with her has to keep an eye on her at all times. She also will take the milk and other items out of the fridge and place them in the pantry or the dishwasher without realizing what she's doing. When I try to grab the item and return it she will get mad at me and insists that she is doing it right. She also will try and answer her cell phone even though the battery is dead. I will hear her saying, "hello? hello?" with her phone up to her ear and I will ask her what she is doing and she will tell me that she is trying to answer her phone but someone keeps hanging up on her. I will go over and check the phone, and sure enough it's dead.
The biggest concern with her deterioration though is that her headaches are back. She started having headaches at the end of January and her doctors put her on steroids. That controlled the swelling and kept the headaches away until this past week. I have even increased her dosage of steroids, but the headaches still happen every day. It's sad to see her struggle and suffer.
She does have a rare moment of clarity though, which I cherish. I have put together a slideshow of photos of Lisa's life to be shown at her viewing and funeral. I put it to music and was showing it to her the other night. We sat and held hands while watching it. She was smiling but I could tell that not much was really registering. A few minutes into it I could feel her grip relax and as I looked over I could see in her eyes that she was having a moment of clarity (you can see it in her eyes when she's out of it or not). She then started to cry, turned to look at me, and referring to her cancer said, "This sucks!". We both hugged each other and just sat like that crying for a few minutes.
I'm not sure how much time she has left, but I am ready for her to pass. I love Lisa like crazy. It aches to think of living without her. But I'm ready for her to die. For her sake, for the kids sake, and for my sake. It's time. Her quality of life is terrible right now. The kids don't understand why she is the way she is and it's a drain on them. And as for me, I'm tired of being tired all the time. The emotional strain of knowing the inevitable is coming and of watching her deteriorate has been hard. I will keep on pressing forward and taking care of her regardless of how much longer she lives, but it feels like her end is near. It will be such a relief for her after she dies. She will be out of pain and will have her memories back. She will be in a much better place. 
I am so grateful for the wonderful life we have had together. I'm going to focus on that gratitude going forward and will refrain from feeling sorry for our situation. I also know that the Lord will help the kids and me as we continue onward. Thankfully the kids have been responding really well. I've had some great talks with them about what we believe happens after death and I have seen the Spirit work on the kids and help them to understand. As they understand, you can see the fear dissipate and a calmness replaces it. Sorry for the long update, but I thought I would give our family and friends a little window into what has been going on the past while.


Jared + Carly Reid said...

We love love love love you guys.

Linds Forrest said...

Thank you for the update, it's good to hear of the good and bad and so good to see how much love is surrounding her, Lisa has been consistently on my mind for the past few weeks. I try to always say a quick prayer in her behalf, as well as your family.