Friday, February 19, 2016

Decision for Hospice Care

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.

Tuesday, February 9, 2016

Some scans of Lisa's tumor

This first scan shows her MRI from September (the two images in the left column) and her scan in December (the images in the right column). You can see how her left hemispher (the right side on the image) was clean and clear in September. Then in December you can see the white spot that had developed. That white spot is her new tumor.

Her IV infusions of Avastin were supposed to slow down the tumor. When we went back into her doctors in late January, the tumor had tripled in size. You can see in this scan not only how much bigger it was, but that it was starting to shift her midline and push her brain off to the side from all the growth and swelling.

After seeing this scan, her doctors informed us that the only option left was to try a new clinical trial called Rambo that combines her Avastin with radiation and an antibiotic called minocycline. Her doctors are hopeful that this regimen will slow it down. On that visit they began to ask her a series of questions to see how she was doing and we were able to discover that she was experiencing a loss of coordination and couldn't dance very well anymore. It also explained why she struggled so badly to snow ski when we went as a family. Her tumor was starting to affect her.
As she went in for her pre-radiation preparations two weeks later, she was starting to show diminished memory, cognitive function and physical abilities. They took another scan and found that the tumor had grown substantially more in the two weeks since her last visit.

The past week has been really difficult to see how quickly she has been deteriorating. I wrote this update to her doctor this morning:
Hey Sean, I thought I would give you an update on Lisa. She is noticeably getting worse each day. Her deterioration over the past week has been pretty dramatic. I am in charge of all of her medications and she is taking all of them each day. She is now to the point where she really struggles with simple physical tasks like getting dressed. I have to get her dressed each day (so when you see her if her clothes don't match, that's my fault). She really struggles with putting her contacts in, so I am just having her wear her glasses all the time now. Also, when she walks down stairs I have to hold on to her and even then she still stabilizes herself on the wall. So physically, she is getting a lot worse.
Mentally, well, her short term memory is non existent most of the time. She doesn't know what day it is, what time it is, and often repeats the same questions over and over again. She will forget something you told her not 15-20 seconds before. She is even starting to lose some of her long term memory. Yesterday she forgot that we have four kids. She thought we only had three. She forgot that she and I first met and started dating in Chicago. She thought it was at BYU. When neighbors drive her to lunch, on the way home she can't remember how to get to our house, and then yesterday as they pulled up to our house she thought it was her parents cabin up above Oakley. She didn't recognize our house of the past 7 years. We have noticed that whenever she is away from the house, like at sacrament meeting, she gets really confused and struggles. It's like it's too much for her to process. So from now on, I was going to just keep her at the house unless she is going down to Huntsman for her appointments. She just doesn't do well at all with a lot of people and a lot of stimulation around her like at stores and restaurants.
As the day wears on and she gets more tired, she gets worse. Yesterday she had visitors come to our house while I was at work. She basically was socializing and visiting with many family and friends for about 6 straight hours. When I got home from work, you could see it in her eyes that she was exhausted and confused. So I discretely told the visitors that she had to eat to take her medication. I hate to be a jerk and limit her visits, but dang that was rough on her. I'm thinking of limiting their visits to less than 30 minutes (instead of the 2 hour ones she had yesterday). After I fed her, I set her down on the couch in a quiet room. She sat there for over an hour not saying anything and just sitting with her eyes open while staring at the wall. It was as if her brain had gone into sleep mode and shut down. She had just checked out. When I would go in and check on her, she would see me and say "hi! How are you?" in a very happy tone as if she was just seeing me for the first time that afternoon.

We are truly taking things one day at a time. It breaks my heart to see her like this. I love her so much and get emotional realizing that soon she will pass away and return to her Heavenly Father. She's an amazing girl.

Lisa's tumor is back

I really need to get caught up on some blog posts for Christmas and going skiing as a family, but life has become so busy lately. In mid December Lisa went in for a routine 2 month MRI scan. They found a new tumor unfortunately. This time on her left hemisphere. It was too deep in a bad spot, so surgery wasn't an option. Her doctors decided to put her on a chemotherapy regiment called Avastin. In mid January she went in again for a follow up scan to see how her tumor was responding. Unfortunately it had tripled in size.
So I wanted to start doing a series of posts about her tumor for memory's sake.
Back in December I found out that the mom of one of my best friends from high school discovered that her esophageal cancer was back and looked terminal. I wrote her some words of encouragement. I wanted to make this post about those words I sent her.

First of all, I just wanted to say that my heart goes out to you and I'm so sorry to hear this. I'm so damn sick of cancer. Lisa just got news two weeks ago that her cancer is back as well, and unfortunately things are looking grim for her. Her tumor is an aggressive stage 4 glioblastoma and isn't operable due to it's location being too deep in her brain. This tumor will very likely be what takes her life. I apologize for the unsolicited advice, but I wanted to reach out to you and share some of my thoughts and feelings that I've had while wrestling with this challenge over the past 4 years.
While I personally don't have to suffer through the physical pain and anguish that you and Lisa have, I have had a front row seat to the ordeal. And I have unfortunately had to suffer much of the emotional agony and heartache associated with cancer and it's unforgiving attack on my wife. I have struggled with feelings of sorrow and feeling cheated. I feel cheated that the love of my life is going to most likely die far too young. The way we met and fell in love is honestly like a fairy tale. I feel cheated that I don't get to grow old with her. I feel cheated that I won't have her help and support to raise our four young kids together. And I feel cheated that at this stage of life instead of worrying about the more trivial aspects of life like most of my friends have to worry about, I am instead having to worry about some very complicated, very heavy, and very difficult problems.
I hate that this challenge is completely out of our control. I have a very type A personality, and I love to be in control of my life. This powerless feeling as I watch my wife's cancer repeatedly come back drives me insane. It's not like if we just try harder, if we just think harder, or if we just put more effort into recovery that we will be able to beat it. Yes having a good attitude helps, but ultimately when you have a stage 4 brain tumor, the cancer will take your life. That doesn't mean that cancer wins though. I love the words of Stuart Scott, "When you die, that does not mean that you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live," he said. "So live. Live. Fight like hell. And when you get too tired to fight, lay down and rest and let somebody else fight for you."
Those words instantly bring me to tears. I love them. They are so true. They are words to live by. For me personally, I have to look for the good in life. Cancer sucks. It's really rotten and there is no way to sugar coat it. But, as terrible as Lisa's three brain tumors have been, we have still been able to find joy and beauty in life over the past four years. We have made a conscious decision to look for the good that surrounds us. As a result I have found immense joy in some of the most simple things like sunrises/sunsets, my children laughing, and just sitting next to my wife while watching a movie.
Above all else, I believe that to truly be able to find peace and joy throughout a harrowing trial like cancer, one must have a belief in a higher power. It is essential to believe that there is more to this life than our mortal existence. This belief can help you to transcend the pain, the heartache, the struggles, and the suffering that we experience in life. For me personally, my belief in a loving God helps me to face these challenges. I believe that God is watching out for us and that he wants us to be happy. This belief has been strengthened by powerful feelings of peace and comfort as I have turned my heart and life over to Him. I have experienced an undeniable feeling that everything is going to be alright. Whether that means that Lisa lives or dies, I can't say, but I can say that the Lord will be there to help us, to carry us, and to comfort us regardless of the outcome.
I also believe that we cannot grow or become better individuals without being stretched beyond our comfort zone. Just like with weight lifting, our muscles need to be pushed beyond what is easy. Pain and struggle and effort are necessary to increase our muscle size and strength. The same goes for us as people. Without these struggles and trials, there is no way we would be able to grow. I believe that God allows these struggles to help us become better, stronger and to more easily become the person that God knows we are capable of becoming if we turn our heart to Him and tackle these trials with the right mentality.
It's not easy. It's very hard right now for Lisa and me. I wish we didn't have to go through this. I really do enjoy the easy path. But despite the difficulty of these past four years, I have found a lot of joy, I have grown so close to Lisa, I have felt the presence of God in my life, and my belief in Him has grown tremendously. I am a much more patient person. I am much more compassionate and sympathetic towards other people and the challenges that they are facing. And I am much stronger and much more able to tackle the challenges that life inevitably throws our way.
Stay strong. Stay positive. Find the good in your life. I love you and will pray for you and your family!s 

Scary Mommy

While I was at a Relief Society activity a few weeks ago I felt my lip start to tingle and knew I was experiencing an allergic reaction to something and that my lip was going to start swelling. I told the ladies I was by to not worry about me. I quickly finished up my project and packed up to head home. I needed an antihistamine quick. Cody and I were headed out for date night. 
This first picture is probably an hour or hour and a half after the initial tingling started.
After we had dinner.
 After the movie. Roughly 5-6 hours later. I called my PA and texted him a picture of me (the above shot) and he advised me to go to the ER, but I told him no. I wasn't experiencing anaphylatic shock and had taken precautions like taking my inhaler. If the swelling grew worse I would go to the hospital. Cody was watching out for me as well. I know I look horrible. I was embarrassed to even go to the bathroom.
 The next morning this is what my face looked like. I was still puffy, but not nearly as ugly. By Sunday I was almost 100%. I still don't know what triggered it. I have extremely bad luck.
I went in for my 3 month scan on Tuesday the 15th and what to my wondering eyes but I have another brain tumor. 3 months ago my scans were clean and I was still healing from my surgery back in March. Now my scans show this white spot. Dr. Colman suspects it is a Glioblastoma. It is so hard to believe that in less than 3 months this aggressive terminal cancer has invaded my brain. My options are limited and costly. I drove down to Provo yesterday and met with Dr. Gardner to talk to him about possible resection and also spoke to Dr. Clark. I am awaiting a phone from Dr. Gardner now.