Monday, January 25, 2016

You know you are loved when you find your 10-year-old in the kitchen making pudding for you and your husband to take with you to the doctor the next day for lunch. Hunter made us chocolate pudding and was hand beating it together with an egg whisk. Not a normal round whisk, but an egg whisk with only 4 metal loops that break up the yolks and whip the eggs together with. It's really only good for eggs or gravy, but it was the cutest thing seeing Hunter standing there mixing it up in a huge white bowl; a bowl big enough to hold 8 times the amount of pudding he was making. :)

He asked what else we wanted for lunch tomorrow so he could pack it up for us. My heart melted. It was hard telling him that we'd probably be home for lunch so he didn't need to pack anything. It didn't bother him. He just put some aluminum foil over the pudding, stuck it in the fridge, and went on his way, proud that he could help make his dad something for lunch when he knows we are meeting with the doc about the chemo plan he is now looking at.

Later on I snuck the bowl of pudding out of the fridge and put it into a smaller bowl so I had more room to put something else in there. As I was scooping it out of the big white bowl, I noticed it wasn't quite all the way mixed. Again, my heart melted for that cute boy I get to call my son. So I stirred it up a little more, poured it into another dish, and had a taste, or two, or three, of his yummy pudding. I love when he does this stuff for us. He sure feels big when he makes his pudding. :)

Wednesday, January 20, 2016

The Mess-Up

We've started reading the Book of Mormon with our boys this year. Each night we try to read a chapter. Everyone takes turns reading. Tonight it was Cody's turn. It didn't exactly start out as reverent as you might want it to go, and things quickly escalated. He began reading like he was on stage and then the mess-up came.

We were reading in 1 Nephi 13:10 "And it came to pass that I looked and beheld many waters; and they divided the Gentiles from the seed of my brethern."

That's how it's supposed to read.

Cody read: "And it came to pass that I looked and beheld any waters; and they divided the genitals ..."

Oh my, you should have heard the laughter come out of that one! We all about died! And then it escalated even more. Cody began switching up his accents as he read, with laughter from the peanut gallery following every word he emphasized in some weird accent. It wasn't the most reverent reading, that's for sure, but it was fun and memorable.

I love these crazy, wild boys of ours.

Friday, January 15, 2016

I realized something tonight. I do the arthritic hand rub I would always see my dad do. The one where you rub one hand over the other in a sideways motion over the knuckles. I've been doing this for a few years now, but much more than I care to admit this year. And once the rub is done, fingers are massaged and then kind of held by the other hand all the while hoping this will somehow take the pain away.

The year I turned 30, I began noticing the arthritis had started in my hands. First it started in my pinky fingers, then almost year by year, it crept through the rest of the fingers; the ring finger being next and so on. My grip has lessened and I've noticed I drop a lot more things this year. My hands swell, and my knuckles are definitely getting bigger. My hands look like old lady's hands already with this and the lovely dry skin I have. The arthritis is prevalent throughout all the knuckles, and now, my middle finger and pointer finger will feel like they are trying to curve over at times; almost like they are trying to twist right around. I know what this is. Or so I feel like I do. Rheumatoid arthritis. My dad's side of the family has it terribly in their hands. My grandma and almost all her sisters had the crippling type that left big knuckles and their fingers twisted in ways you never want to see fingers go; almost a wave like look to them like the ocean had caused them to curve over. When I think of the Thackers side (my Grandma Kenison's side), their hands are one of the things that I remember most. My mom's side has rheumatoid arthritis as well, but not as crippling as my dad's.

I remember about 4-5 years back. Jim and my dad stopped by for a minute in Jim's truck. It was spring time and warm enough that we only had to wear jackets at night. I walked out to the truck to say hi to dad and I saw him rubbing his hands. He'd said he was having a lot of trouble with them with lots of pain and swelling. I looked down at his hands and was shocked at how swollen they were. It was like he was wearing a fat suit that included his hands. They were so puffy, it almost looked fake. He could barely make half a fist. He didn't know why they all of a sudden became so bad, but I could tell it was miserable for him. It was hard for him to work and use the tools he needed to to repair the machines. I asked him to go to the doctor and he said he had decided he needed to. Aunt Kathy was on a trial pill that was working well for her. She wanted dad to get on it, but he never did. He ended up taking some kind of inflammation reducer and it did help. His swelling went way down and he could work without hurting as much. Dad became my arthritis buddy. I've had arthritis in my knees since I was a teenager. In fact, when I had a surgery at 17, the doc said he had "cleaned up" the arthritis, so who knows when I actually started to get it. Dad and I would compare pains and ask how the other one was doing. We'd predict storms coming and I tell you what.... we were right. Dad always knew what to say to comfort me when we'd take about arthritis and I'd tell him how it was moving in on me more. I miss that. I miss how strong he was and would work through the pain no matter what. He always inspired me and continues to, to just keep going. He was the one who told me why I couldn't make fists in the morning. I'd wake up and it was like my hands wouldn't work for a bit after I'd wake up. This started in my early 20's, but I didn't say anything to anyone except Jared. They were so weak, I could barely hold on to or pick up things. It was the arthritis. Dad's did the same thing. Aunt Kathy told me at the luncheon after dad's funeral that she would be my new arthritis buddy. Sadly, I know Aunt Kathy knows what arthritis pain is like, too. We Kenison's are lucky enough to be plagued with this, I guess.

It just hit me as I was doing "the rub", how for years I'd see my dad do the same thing. I'd see him rub his knuckles as he was sitting in his chair watching tv. I see him do the rub as he was working and would take a break as he'd let his hands rest. I'd see it as I was cutting his hair. He always seemed to be rubbing his hands. Somehow it makes it feel like there's one small thing we can do to relieve the pain, when honestly, there is absolutely nothing they can do for it other than mask the pain somewhat with a pill. It doesn't take the crippling part away, however.

I subconsciously have been doing this for a few years now, and tonight I realized another connection I have with my dad. The arthritic rub.

I miss my arthritis buddy.

Tuesday, January 12, 2016

Hunter was looking through some of my keepsakes from my childhood/teenage years. After finding something he really liked, the tiny porcelain kitty, he came to me and asked...

"Mom, when you die, can I have this?"

I just looked at him and said, "Thanks Hunter."

He laughed and said, "Well, can I just have this someday?"

As the boys were going to bed tonight, I overheard Hunter tell T.J. and Cody,

"When mom dies, I'm getting her little kitty."

Cody, to my defense, says, "Um, can we not discuss this? It's weird. It's weird to think about our parents dying someday."

Goodness, I think Hunter really wants that little cat. Maybe I should just give it to him before he puts a pox on me. Ha ha!
Hunter: "Mom? What's pooberty?"
Me: "Um, why?"
Hunter: "Cause I want to know so I know what they're talking about on (the movie) Inside Out."

Ha ha! Oh that kid!

Wednesday, December 30, 2015

Do you know what you get when you have a colonoscopy? You get to choose whatever you want for dinner the next night. Jared chose chicken strips with homemade honey mustard sauce, fries, macaroni and cheese and salad. Yes, it took two and a half hours to make, but I'd do anything for him. And, it's really yummy!!!!

Recipe curtesy of Paula Deen's Chicken Strips from her Lady and Sons Restaurant.
It's super delicious!!!

Tuesday, December 22, 2015

The Start of Treatments...

We met with Jared's radiation oncologist today. It's ironic and was quite humbling to realize that we were meeting at the exact office I bring my mom to for her radiation oncologist. But I won't get into that feeling this morning.

While we were waiting to be called back, the receptionist came over and informed us that we were to meet his oncologist upstairs at 12:40, after meeting with this first doctor. Looked to be a long visit at the hospital today.

The visit with the radiation oncologist went well. He told us that the biopsy Jared had on the 10th showed this to be a Desmoid tumor, but a few of the cells were actually staining to show a GIST tumor. Crazy, but they are still thinking this to be a desmoid. The first option to treat this is surgery, but he's already had that and it proved to be non-resectable. The second is radiation. This can cause a lot of side effects, which include diaherra, pain and inflammation in the intestines, and scar tissue that can make a surgery down the road more difficult, so really, we don't want to do surgery yet. The third is the chemo pill. At first they wanted Jared to participate in a study for this, but with finding that some cells showed this to be a GIST, there is another form of chemo pill that actually will treat both a Desmoid and a GIST. So this is the first step in fighting this, and then if radiation is needed down the road, that is an option. Radiation has proven effective in shrinking these, but with the location of Jared's, there are just too many side effects to jump in as the first type of treatment. He looked at Jared's scar and was surprised at how big it was, how raised, and how hard it was. He was wondering if Jared has some sort of gene that makes it to where his body scares a lot. Desmoids are like a scar tissue tumor. They grow in the tissues that make ligaments and tendons and are really a bunch of scar tissue that just keeps multiplying. He said if Jared has this, it would explain the desmoid tumor, but after looking at some other scares Jared has, he's not sold on that idea. Jared has to have a colonoscopy and some genetic testing to look for Gardner's syndrome, which is linked to colon cancer. His tumor is connected some to his large intestine, so they want to rule this out. Plus, we need to know if they should be watching Jared closely for colon cancer and if our boys are at risk for this. All this should take place over the next few weeks.

We met with Dr. Nibbley afterwards. We talked more in detail about this type of tumor. There are really no side effects with these two types. He said the anxiety Jared had a couple years ago that lasted about 6 months could be related, but there are no known relations that he knows of. He said tumors can do weird things, so it might be from that but we'll never know. He said they are for sure doing the chemo pill that is called Glevo. They'll watch Jared real close at first with blood tests to make sure his liver and kidneys can handle this, but usually the side effects are minimal. He said side effects are usually muscle aches and you might feel a little blah. People get used to it, and it's usually when they go off the pill, that they realize they do feel better without it. He said this is a type of pill that, if it works, he can stay on it as long as he needs to. This type of pill is also used to treat a type of leukemia. There's someone who has been on this pill since it came out 12 1/2 years ago and it's still working for her. That was very hopeful to hear! This treatment is one pill a day, but costs around $2,000 a month. Their office is checking with our ins. to see what our copay will be, and if it's still high, they'll figure ways to help get it down. We should be looking at getting his first prescription filled and him starting it in about a week. We are finally to this point!!!!!!! Doc said he knows it might seem like we've waisted a lot of time and have to back track now trying to make up for time lost without treatments, but with this type of tumor, it doesn't matter. This pill would take care of whatever might have grown in the last few months. We weren't worried about that at all, but I know some others have been. He said it looks as though this tumor has grown a little since his first original Ct scan back on Sept. 24th, but they think it's because it's inflamed a little and has a small pocket of air inside from the surgery and biopsy. The air should receed on it's own. Jared doesn't have the aggressive type of tumor. His is definitely slow growing!!!

All together we were at the hospital for 3 hours. We spent a lot of time talking to both doctors and having things explained to us more. It was really nice! It's nice to be able to get more answers and have a plan of how to fight this. The doctors are hopeful as well that they will be able to stop this, but even shrink it. I know it has taken a long time to get these answers, but some things just take time. Dr. Nibbley knew this was a slow growing tumor and would tell Jared he wanted him healed from the surgery and sepsis first before he really had to jump into more tests. Plus, today he said that we really didn't loose time with this. It wouldn't have mattered if he'd started treatments now verses a month ago. That was also nice to hear. Doc said it was good we could come in today, otherwise he was going to have us come in on Christmas Eve. I'm glad we got the news today. We are able to celebrate Christmas even more with having our minds at ease much more.

It's so exciting being to this point! I gave him a kiss and hug in the elevator as we left.  :)

Jared and I went to Arby's to celebrate. There still aren't a lot of restaurants he can eat yet. Arby's hasn't made him sick yet, so this is one place he likes to go. He got a huge roast beef sandwich and a salad. I got a reg. roast beef, a salad, and small fries that we shared. Jared also drank a few sips of Mountain Dew. This is the first time he's had pop since we were camping. He has to be careful about putting too much air in his bowels from the carbonation. Let's just say it was pretty hard on his system. He could hardly sit still with all the air that built over over a few minutes. But hey, now he's had pop! He's just staying away from it now.  :)

We ran errands afterwards to try and finish things up for Christmas. We didn't get home until 3:40ish. For leaving at 10:30, we were a lot longer than expected. I'm running out of time to get ready for Christmas, but that's the least of my worries today. I couldn't stop smiling, I had such a peaceful feeling and still feel like everything will be ok. I'm so thankful to have Jared in my life. He is my bestest friend. I am so in love with that guy.