An old post

I found this as I was going through my blog drafts.

It is from June 17, 2015 and although the info is old, for record keeping sake, I thought I'd post it.


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I thought I would have more free time in the summer, but things have stayed pretty busy around here.

As of today, Jake has completed 18 of 30 radiation treatments. More than half way there.  He continues to take an oral chemo pill every night through the last dose of his radiation. He commented to me that most people only do the daily chemo pills for 6 weeks once, but he's lucky enough to get to do it twice.

Honestly, he is doing pretty well. The week before he started radiation was rough as we all got the flu over a weekend and he was having some pretty serious head pain. He had tapered off of his steroid again and it was causing him some trouble.

Steroids are devils in angels clothing. They do help reduce inflammation, give him more energy, and take away the pain, but they also inhibit his immune system, reduce his strength and muscle tone, and make it harder to sleep.

He has been on steroids of differing amounts since his laser treatment in February and is really hopeful to kick them soon. The longer you are on them the harder it is to go off, but he has been doing another much more gradual taper and seems to be tolerating it ok. He really wants to kick the steroid and let his body take over its natural functioning.

Radiation has become mostly a routine thing. He gets picked up by ward members or I take him in the afternoon, drive downtown, a nurse calls him back, he gets positioned on the table with a head mold in place, they radiate him for 2 minutes, he gets up, loads in the car and comes home.

The actual radiation is painless and he says you don't feel anything happening to you on the spot. He has started to lose his hair in a circular patch where they are radiating him and that skin looks a little more sensitive than his other skin.

Jake does say that the main effect he feels is fatigue, lethargy and an overall lack of energy. He takes a nap every day.  He does like to sit outside by the pool or on the deck or inside either in our room our out in the family room. He is still able to take care of all of his needs and is physically whole. He eats dinner with us and helps the girls with their reading class. He reads to Tommy and plays ball with him. He still helps with bedtime and does the girls teeth before reading them a story before bed.

He still seems to be himself mentally and has noticed that he's not grasping for words as much as after his surgery. He will have moments of difficulty concentrating, but he usually recognizes it and takes time to rest. He still has the same even and steady temperament, and although he's working through some feelings of depression he is able to communicate what he is going through.

He has also spent some time on different projects like recording some life history memories, coordinating our benefits, writing cards and emails to different family and friends. He has spent some time reading books, the scriptures, and cougar board and watched a few of the NBA finals games. He is here for me to hang out with at night and I am so grateful for the time we have had to spend with each other.

As far as the kids, they got out of school almost 3 weeks ago and have been loving their summer time freedom. The girls are in a 3 week reading class taught by my friend Nancy and they spend a lot of their days reading to win prizes from her. They practice the piano, do chores, help with Tommy, and have each taken a day to plan, prepare, and clean up the lunch. Lauren had the idea to do a summer school with her friend, and Ellie is the helper while Ada and a few of her friends are the students. They've loved making lesson plans and activities for the kids and hope to do it again next year. We've also been swimming almost every day, with Ada taking swim lessons and hosting a swim day at our house one afternoon a week. Tommy loves having his sisters around and tries to keep up with them.

I am currently doing well. Jake says that my emotions follow his physical progress or decline and there is some truth to that. When he is doing well, I feel better about everything and when he is having a hard time I find everything to be harder. I have been able to read, do some crafts, meet up with friends, and spent some much needed time in the temple. I do know that when I am closer to God and seeking His help my days are definitely better than when I am trying to go it on my own.

Over the last four weeks we had 3 of Jake's brothers and then our brother-in-law come to town separately and visit with us. We loved having them come and visit. Jake really appreciated the man to man time with each of them, as he's been thrust into the home world of women and children it was nice to have some men around the place. The girls loved playing with their uncles and getting to know them better and Tommy warmed up to each one. I appreciated having an extra pair of hands to help around the house, fixing things, or run kids around and most of all just knowing that someone else was here to love and support Jacob. We are grateful to each of them for making the trip and to their families for letting them come and be with us.

This time has been a blessing and we are grateful to be all under the same roof together, sharing our days and love for each other.

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