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.

Monday, March 7, 2016

Night at the Aquarium

A couple of weeks ago the aquarium in Draper had a special night for families that have a loved one battling cancer. Our kids were invited to attend, but Lisa and I were not able to go. Thankfully my sister and her husband were kind enough to take them out for a fun evening at the aquarium.

The kids had such a great time. When they came back home that night they were talking non-stop about everything they saw. A big thanks to my sister and brother-in-law for stepping in when we were unable to go. You guys are the best!

Sunday, March 6, 2016

Grown Men Don't Cry

This song has been coming to my mind the past few weeks as I find myself in tears. Like Tim McGraw said, "I don't know why they say grown men don't cry." As I've thought about it, I'm not crying for Lisa. If anything, I'll be relieved for her when she dies. She'll be in a better place, will have her memories and wits about her, and will be free of her terrible cancer.
I've realized that my reasons for crying are quite selfish. I'm heartbroken that I won't have her by my side anymore. And even though I have wonderful family and friends for support, I fear that I'll be lonely without her to talk to, to laugh with, and to confide in. I'm not sure why they say grown men don't cry, because I sure have done my fair share lately. I do take comfort though in knowing that the only perfect man to walk this earth also cried. The shortest verse in the bible, John 11:35 "Jesus wept".

Lisa updates

I have been trying to update our family and friends on Lisa's progress and have been using facebook to do so. Here a few of the updates I sent out to family.

Latest update on Lisa. Her brain tumor has been growing rapidly and hasn't been slowing down despite chemotherapy and radiation. Her doctors gathered together Wednesday to discuss her case as a tumor board at Huntsman Cancer Center in Salt Lake City. I spoke with her radiologist and oncologist on the phone last night, and given how advanced and how aggressive her tumor is we have unanimously decided to discontinue her treatment and to pursue home hospice care. At this point it is the most humane approach for her. To be honest, this decision was quite the relief for me and has brought both Lisa and myself much peace. It still is heartbreaking and tear jerking, but comforting to know that we won't be putting her through needless suffering and misery.
To explain the rationale behind our decision, we discussed Lisa's quality of life. Currently she has no short term memory. She can't remember things from 30 seconds ago at times. Her long term memory is beginning to fade. She is unaware of what day it is or what time it is most moments throughout the day. She is struggling physically. She needs someone to help her balance when she is walking around. I have to dress her and bathe her. She struggles badly to follow simple instructions as her brain can't relay the signal to her body.
Her doctors all agree at this point that it is very unlikely that she will ever fully regain her memory or physical capabilities even if she responded really well to radiation. Also, even if radiation is successful, she will still die within a matter of months. That knowledge causes me to ask why we would put her through the hell of radiation just to prolong her life by a few more months merely to keep her alive at her currently lousy quality of life.
Also, most brain tumor patients don't undergo three rounds of radiation. The successful cases of people who underwent the Rambo trial that she was on were with individuals who had much smaller tumors and were typically receiving their second round of radiation. Lisa really struggled to finish her second round of radiation a year ago. It was really brutal on her. It would undoubtedly be worse this go around considering that her tumor is much bigger and she isn't as healthy as she was a year ago. The treatments this time around were already beginning to bother Lisa. In her moments of clarity she was beginning to complain about them and dreaded her daily visits.
Her doctors anticipate that she will pass away anywhere from 3 weeks to 3 months from now. Most likely sooner rather than later. The good news is that she won't be in pain. Home hospice care will help her be comfortable and we will get to be with her.
I can say that we have positively felt the strength and peace that comes from the Spirit of the Lord thanks to all of your prayers. I rejoice in our belief that Lisa and I will be together again after death thanks to the atonement of our savior Jesus Christ. I have decided that instead of having an attitude of 'why me' or a feeling of being robbed of many years with my wife, I would instead be grateful for the wonderful time we have had. We truly have had an amazing 14 years since we first met in 2002 in Chicago. So I will hold my head high knowing that Lisa has lived life to the fullest and we will relish these last weeks we have together.

Feeling like super dad today. I accomplished a ton, all with Lisa in tow. I ran down to Salt Lake to make a purchase at Scheels and washed my truck. Then at Lisa's request I took her shopping (browsing) at Maurices, and took her to lunch at Taco Bell (of course). I then took a trip down memory lane with her as I drove us by our apartment where we lived when were first married and took her to the Cougar Creamery for an ice cream cone. After school got out I took the boys to get their hair cut, took Aubrey to her pediatrician appointment and then after dinner took all the kids to the outlets to get them new shoes. And I managed to squeeze in a workout. As I was just talking to Lisa recapping today's events, she unfortunately couldn't remember any of it. She did however say that even though she can't remember it, she's certain the Taco Bell tasted awesome. Win!


Latest Lisa update. Physically her deterioration has plateaued and she hasn't gotten much worse over the past week. Mentally though she continues to struggle more each day. Most of the time she thinks she's fine and has a few years left to live. She thinks her doctors gave her a clean bill of health. As a result she thinks she is still capable of performing every day tasks (which she can't) and wants to be very independent. That tends to create big problems. She gets bored easily watching TV because she forgets what she is even watching after a few minutes and then will wander the house. She tends to throw things in the trash like the kids homework, bills, mail, even an ipod. She moves perishable foods from the fridge to the pantry, dishwasher and cabinets. It's exhausting following her around all the time keeping her out of trouble. 
Last night at 8:00 she wanted to change into her pajamas and insisted on doing it herself (she has needed help with this for a few weeks now). I was busy with something and told her I would come upstairs in a few minutes to help her. She didn't want to wait and headed up anyway. Not two minutes later I hear the two little boys screaming down at me, "Dad! Mom's trying to change in our room!" I immediately ran upstairs to find her part way through getting undressed. All the commotion frightened her and she said, "Fine! I'll wait to get my pajamas on." I then led her back to our bedroom to change. She doesn't realize what's going on and gets angry when we try to help her. 
She still does have funny moments though. This morning when I was giving her all of her morning medications she said, "Wow! You are really good at this! How did you get so good at arranging all those tiny pills?" She even busted out some sayings from Lord of the Rings that blew me away. She was never a big fan of it so I was shocked to hear her last night at 9:30 telling me she was hungry again and asked me if she could have 2nd dinner. She then proceeded to talk like a hobbit about 1st and 2nd breakfast, etc. She also still tries to smile as much as she can. Even when you can tell she is very confused and unsure of what's going on, she's still smiling.

Taco Bell Obsession

Around early February Lisa developed an obsession with Taco Bell. It's been quite funny. She didn't used to particularly love Taco Bell, but now she talks about it all the time. She talks about how much she loves the cheesy sauce and the sliced tomatoes. I have no idea where this obsession came from, but it is real and she is very sincere about her love for Taco Bell. She will giggle and become so excited whenever she gets to eat there. She is like a little girl on Christmas morning. It's funny to see her reaction.

She has even had some funny Taco Bell sayings. When her cravings first started, I put her to bed one evening and kissed her goodnight and told her I was about to go downstairs and exercise. She kissed me back and said, “ok, as long as you don’t go to Taco Bell without me.” Ok, I’ll try and refrain babe!
One day at dinner time she got really serious, looked me in the eye and said, “I don’t want to be buried at a Taco Bell. I still love their cheesy sauce, but I think I would rather be buried in a cemetery.” That was a big relief for me. Trying to figure out how I was going to sneak her coffin in to a Taco Bell without getting arrested was proving to be problematic.
Another evening we were alone in our room and I was catching her up with everything that had happened that day. She stopped me right in the middle of one of my sentences and said, “I’m sorry. I didn’t hear a word you just said. I was just thinking about Taco Bell.” Apparently her deep love for me took a back seat to her love for the gooey goodness from Taco Bell.
When my sister Kristin and her husband Chris announced the birth of their newly adopted daughter, Lisa was talking about her cheesy sauce from Taco Bell and said to me, "I guess now I'm going to have to start sharing it with the baby, dipping her binky in it." 

Taco Bell's social media department caught wind of this and sent her a care package. She was in heaven to receive it. They sent her some t-shirts, a hat, a bag, some cord organizers and some rings that spelled out Taco Bell. Well done Taco Bell! You made her day.

This is her genuinely happy grin as she is eating at Taco Bell. Such a funny lady.

February odds and ends

My parents and I took the kids to the boat show one evening. There were some amazing boats to look at. The kids particularly loved this BYU Mastercraft. Yeah, I was coveting several boats that night.

We had the pleasure of welcoming our good friends from dental school the Jergensen's over to our house one night. They were in town from San Diego and it was so fun to catch up with them.

Here is an image of the pills Lisa has to take morning and night. Poor girl.

Lisa has had a bucket list item for several years of walking out on one of the local frozen lakes. I took her and the kids up to Strawberry reservoir to do just that.

It was a beautiful day. Lisa was glad she was finally able to do it.

We found a scout troop that let us use their auger to dig our own hole in the ice.

Surprisingly, the ice was still over two feet thick.

Lately I've been trying to improve my hair dressing skills for Aubrey's sake. I have been trying to improve my french braid. I still have a ways to go, but it's not a bad start.

Skiing at Brighton

After our ski trip to Solitude, we realized that Lisa was having coordination issues due to her tumor. We decided to go for one more ski day as a family before Lisa got too sick. This time we decided to stick to just the easiest green runs for the morning, then at lunch she could stay in the lodge and read a book. 

I dropped Blake off for ski school and then got the rest of the family ready for some fun.

Tucker and Cole on the chair lift.

I took this photo at the top of Majestic lift looking over at Mount Miliscent. I love this view.

I wish Blake could have been in this photo. I love it.

My three older rugrats.

Lisa did well enough for the morning. There was a funny moment on her first run. We were going to the green and as we passed the ski school she lost control and a pine bough knocked her off her skis. She was a little embarrassed to crash in front of all those kids. Other than that she had a good morning of skiing.

After lunch the blue skies disappeared and a snow storm rolled in.

It was snowing really heavily at times.

Here are a couple of videos of us skiing. The kids love to ski through trees. I try to follow them and film without getting my head taken off by a branch.

 Lisa took this photo of us at the end of the day. What a fun day skiing as a family.

Afterwards we drove down to Buffalo Wild Wings and engorged ourselves on some delicious food after a tiring day on the mountain. Unfortunately it was our last day skiing as a family. The kids and I will always remember with fondness the times we went snow skiing with Lisa.

Skiing at Solitude

Lisa surprised me Christmas morning with two tickets to the Jazz vs Miami Heat basketball game. We had such a fun night and the Jazz pulled out a win at home, which is always appreciated. I surprised Lisa with this selfie, thus her shocked look.

We took the whole family skiing at Solitude in early January. We put Blake in ski school in the morning, and then picked him up at lunch to be with us the rest of the day. It was a really fun day, but at the same time really frustrating. We didn't recognize it at the time, but Lisa's brain tumor was starting to limit her ability to do complex physical actions, like skiing. She really struggled to get down the mountain. I feel bad about it now, but we were getting flustered that she couldn't ski a blue. We should have recognized it, but we didn't unfortunately. She couldn't even understand why she was struggling so badly. As a result I wasn't as patient as I should have been. I kept thinking to myself that she has been skiing since she was a little girl and we have skied our entire marriage, why is she having such a hard time? If I could go back and do it again, I would have been a lot more patient that day.
The kids had a blast as usual. Here's Aubrey and Cole on the chair lift.

Aubrey and me.

Cole ripping it up on a blue.

Blake smiling away!

And then Aubrey and me at the truck at the end of the day.

Here are a few videos of the kids skiing.

Christmas 2015

Christmas season around here is always so beautiful and so fun. I captured this picture as I was leaving my office one evening in December. What a beautiful sunset.

Before Christmas I hosted a family party for my mom's side of the family.

We had a white elephant gift exchange and even had a talent show. It was hilarious. We lip synced to a song of our choice. Some people even brought props.

We got so much snow this year over Christmas break. I got a photo of our neighbor's boat buried in the snow in our circle. It felt like I was shoveling our sidewalks every 3 days for several weeks straight.

Lisa got us some tickets to go see this drive through Christmas light show in West Valley City that was really neat. The kids really enjoyed it.

Here is our traditional Christmas morning photo before the kids are allowed to open their presents.

 We spent Christmas afternoon and the next few days at the Foster cabin. While out snowmobiling we saw this weasel running around. It was cool to see him in his white coat.

The kids loved the sledding hill.

We had some great weather and tons of fresh snow to play in.