Sunday, March 6, 2016

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.