Friday, July 15, 2016

The elephant in the room

It has been five weeks since Tony's last appointment with his neuro oncologist, where Tony had two treatments of Avastin infusions over this time. Yesterday Tony had another MRI to see how the tumor is responding to the treatment.

If you can last remember, the previous MRI after chemo and radiation wasn't very promising. Half of his brain looked like swelling and/or tumor growth. Now.... we are very pleased to say that it in fact was swelling and the swelling is now gone! The tumor remains stable right now, meaning we will continue more treatments every other Thursday to try to keep it from growing and will have a follow up MRI and appointment September 9th.

Lately Tony has dealt with an infection in his colon, giving him severe stomach pain when he moves and some awful nausea (but thankfully no vomiting). Just today, the nausea has finally subsided and he was able to eat---- drum roll, please--- a piece of toast! My poor guy has lost about 30 pounds in a month because he just couldn't bring himself to eat literally anything lately. We are hoping this continues to improve as he finishes his antibiotics so that he can have his manly appetite again to match his manly beard :) Move over soups and smoothies and pass him the steak and potatoes!

And now for the elephant in the room. I have two explanations for this for you today.

1) Our family life has now transformed into a very different "new normal" that we are trying to adjust to. We have reached the point in Tony's illness that he is unable to be out and about much or stay up for long periods of time without extreme fatigue. Much of his time is spent sleeping, and when he is up, he is still resting. I've noticed as friends, family, and former students (and even some of our health care team) interact with him, they can see the physical change. My loud, talkative, sarcastic, laughing husband is so much more mellow now. It's difficult for him to hold long and deep discussions too often.

Now the elephant in the room is that Tony has a terminal illness. He knows it, I know it, everyone we associate with knows it, yet sometimes it is difficult for some to talk about. I often get the question, "Why is he so tired? Won't medications, diet changes, or more physical activity change that? What about physical therapy? I thought his medications are helping, so why aren't there physical improvements?" The honest truth is that's what brain tumors do. Tony's tumor (the size of a tangerine) has pushed all the good brain tissue away from its original space, causing pressure to build up in his brain. There can be lots of different symptoms based on the location of the tumor in the brain but in each case fatigue can be the biggest enemy.

Because of his need to sleep, we are often going to places or having daily meals, routines, etc. without him. I think it's very emotionally difficult for him as well because he wants to be present for everything but it's physically impossible much of the time. Often I reassure him about his importance as a husband, father, son, brother, confidant, and friend. There is much he continues to offer to us all and I am humbled to be with him and be blessed by his wisdom and love. He has the opportunity to spend time in reflection and prayer and in turn has blessed our family from his experiences and learning.

I've recently come to the understanding that I miss parts of him. Now I am so so so thankful for the time we have to spend together, and that his personality remains true to his self and character, but I miss what it was like when he wasn't ill. My kids and I attended two LDS baptisms last weekend for our close friends, and while driving home, my heart ached. I wish he could be with us for all things he was with us before. Running errands, attending all our church services, going to the park, venturing out into the mountains, visiting the pet store. I miss surprising him at work when we would randomly show up to visit. I miss watching him wrestle with the kids and dance like a fool (!) in our living room.

But for all the things I miss, the Lord has given me the opportunity to enjoy the new things in our life. As opposed to before, we get to spend more time alone together due to driving back and forth from Salt Lake for his treatments/ appointments. I am blessed with his tenderness and sensitivity. He has always had an appreciation for me but that has only grown for each of us. I am blessed to physically serve him and am thankful for his emotional service to me. We both need each other equally through this, and will rely on each other forever. Our partnership with each other and with God will transcend through anything, even the bonds of death.

I look forward with great anticipation to see Tony break the chains of his physical limitations, for him to have a complete and perfect resurrected body, and for us together to serve our God and King for all eternity.

There is no doubt in my mind or my whole soul. My heart knows these things with a complete certainty.

Just like our five year-old Lily's picture at the beginning of this post, Tony is our blessing.

Now the other elephant in the room is a bit more exciting ;)

2) After we visited with our neuro team at Huntsman yesterday, we were able to visit the research lab of our genetics physician. He is the one who oversees all the screening care for our family and is doing some AMAZING research. Dr. Josh Schiffman's breaking research was published in the JAMA in October 2015 and has now had publications covering his research in 150,000 publications around the world. If they can meet their goal of raising $20 million (through donations or investors), human trials can begin in three years, and our family will definitely be first to sign up!

Essentially, elephant p53 will be inserted into nano particles that will be available in an oral medication over-the-counter, boosting our bodies' ability to fight off cancers. This would be wonderful not only to our family but to the general population. I'll be giving more details as time goes on but in the meantime, check out these videos that explains Schiffman's research, one of which features a few snip-its of our family at home.

Tuesday, July 5, 2016

A picture is worth a thousand words

Just wanted to give a brief update on how Tony is feeling. He has completed two treatments of the drug Avastin and will be having a scan on July 14th. This is a big day for us because we feel we will have more answers to how his tumor is reacting to all the treatments since his surgery in March. The Avastin should have decreased the swelling in his brain making it easier to decipher the big question of "Is it working?" I'll definitely be blogging with an update that evening while I'm enjoying my ice cream ;)

Tony has been very tired. You can see it in his eyes and in his slow steps. Our kids are really beginning to understand "Daddy is really sick" because they now see it. We have just recently started giving them each their own day once a week to cuddle, watch a movie and rest next to Tony when he is in bed as much as they want. I'm hoping these are treasured times for him and the kids. Our little four year old Sophie laid next to him for almost four hours straight on her day. These kids love their daddy deeply.

I'm lucky to spend time with him each night once the kids are in bed. I rub his hands, his feet, his knees, and his very sore left arm and shoulder while he sweetly listens. We talk a lot about our kids, our family, his students, friends and those we love. We talk about the future, as well as the past and present. We dream of things to come and look back with gratitude and awe of God's hand in our life together. God really is so good to us.

Now enough of my blabbering. A picture really is worth a thousand words. Recently we had pictures of our family taken by our cousin Dawnette. Her talent best captures our family right now. I'm sure you will agree.