Life with Leukemia: A Spoon Full of Sugar

Remember how last update I said nothing new had happened. Sometimes I wonder how much of what I say causes the next event… A day or two after that post we got a call from the clinic. They told Tyler to reduce his dose of the meds. Not a big deal really. A few days later our nurse called at 7AM mind you to tell Tyler that the study was ending and he was to stop taking the pills.
We went into the office on Monday to decide on a new choice for meds. I expected we would be taken back to see the doctor, but a tech called Ty back for labs. We didn't think he needed labs so we chatted with the tech. She told us that the study was actually back on and that the vials they were pulling were for the study. While they pull labs I wait in the waiting room (the room they do the blood work in is very tiny I tried standing in it once, but it was obvious I didn't fit) .  I was waiting for a while… and I started to wonder what was happening… I look into the clinic and see them wheeling someone out of the small room. My mind races at this point… could that be my husband? is he hurt? why is he in a wheel chair? has he always been that white and pasty? It took me a couple of seconds, but after recognizing his clothes I knew it was him. The nurse came out to get me. Tyler had passed out not all the way, but pretty close as they drew his blood. They were attempting to pull 30 tubes of blood, and Tyler's stomach was empty, bad combo.
People who pass out during blood work get an extra special room with an ER bed and a TV. They also get tons of crackers and juice. Eventually, they did draw the rest of the blood. After the rush of nurses Tyler finally got to tell me that the study was NOT back on and the blood was being taken as final blood work to end the study. Along with blood work they would need a bone marrow biopsy DUN DUN DUN. We met with a new fellow (fellow being the stage of doctor he was not just that he was a man) who spent time with us explaining our options for a new medication. After going back and forth we had him write the information down so we could decide. Each drug has 2 names, it gets confusing!
After meeting with Dr. D Tyler had the bone marrow biopsy (done by the fellow). He tells me it was actually not as bad as the last time. He'd have to get you more info on that, but even just watching it wasn't as bad. I got closer this time and the doctor showed me how it was done. I'm thinking of doing his next one I'm sure he'd love that! 
We decided on a new medicine and went to pick it up from the pharmacy. I was glad they let us get it right at Huntsman. I can only imagine what the guy at WalMart would think if I came in looking for my meds.
Basically starting this new drug is like starting back at square one, but with better blood test results. Taking that first pill was as nerve racking as it was 3 months ago. I figured if we made the atmosphere awesome, the pill would work awesome. I didn't give him a spoon full of sugar, but I did get him a bagel sandwich and we blasted the radio probably the coolest way to take a pill. So far he hasn't had any crazy reactions, and hopefully he wont. We feel really comfortable with the switch. We appreciate that our doctor was obviously concerned for Tyler's wellbeing. He was probably more upset about the switch then we were. And nothing makes you feel better then when a doctor cares for you the way this doctor cares for Tyler. An even more assuring thing is that if this medicine doesn't work we always have a back up plan.
I took exactly one picture of this last hospital trip. This was after the biopsy, it's proof it wasn't all that bad! I wish I could hire a photographer to follow us around. I always regret not taking more pictures after the fact!! I'd have loved to show you how he looked right after passing out. You might have also loved the zombies we saw as we drove home.
Can you guess what he is doing on his phone??? His work recently recorded one of his labs and put it on youtube, so we were listening to it. Nothing more exciting then listening to Tyler teach.

What else is happening you ask? Tyler is planning the ward Halloween party. I am stressing about Tyler planning the ward Halloween party. We are speaking in church on Sunday. I am stressing about us speaking in church on Sunday. Sawyer is growing up! I'm working on setting rules and boundaries for him because his brain is way too fast and smart for me. I've started watching our friends little baby Finley once a week. She is the cutest thing and Sawyer loves having her here. We went on an adventure to Park City with the Atkinson's. I'll blog about that later because people NEED to know what happened!

I Guess You Had to be There

Leukemia may be the reason Tyler can no longer share a water bottle with anyone that’s really gross anyways, the reason he should avoid too many handshakes and kisses also he’s married so he shouldn’t be kissing anyone but me during the flu season, the reason the first Monday of every month has been lost to hospital visits but there are some things Leukemia didn’t take…

For example his sense of humor. It also did not alter his priorities one bit. He sticks to the important things. Why just yesterday I called Tyler (he was downstairs in his office. I was requesting to be relieved from mothering so I could take a nap shocker… I know… I knew Tyler had a few hours and would desperately want to help what dad wouldn’t. Instead of meeting my request he responded with,

“Well, how about instead I come up and eat lunch and then WE can play legos together while Sawyer naps”

Ummm I think he missed the point of my call. I even asked again if I could just nap and he insisted we needed to spend time together.

This morning I was picking up the house and getting ready to go out shopping. I asked Tyler if he would go with us. He declined making me think he had other things to do. He did…

“I’ve just got to finish this Lego set, oh, and then I’ll do the dishes in the sink” I love that he does the dishes, but I laugh at the order of importance

 

Making a shopping list for me is always stressful! I know I’m going to forget things and I worry about staying in budget. After I figured I had the whole list ready I said to Tyler;

“There’s just one thing worrying me about going shopping today” I’m thinking about staying in budget when I need to buy a lot of big items

Tylers quick response

“I know I know it must be Tuesday… double coupon day” Do I really complain about that every time I shop on a Tuesday? I wish you could have heard it. It’s obviously not Tuesday, he’s a little lost there, but really I do ALWAYS say that on a Tuesday and I usually just cancel all grocery shopping. I’m glad to know he has been listening.

As I read this over, these things don’t seem as funny as they did when they happened, but I’ll let you work at it and create the hilarious scene in your heads.

Here’s something funny in case this post didn’t make you laugh…

He put that hat on backwards all by his little thug self. It must be the California in him.

Like with Leukemia: No News is Good News

We haven’t had much to share as of late, but as the saying goes….

Monday was our monthly appointment and since things have been going so slow we figured, why not make it a marathon appointment?The only marathon I will ever run Because who doesn’t want to spend their whole day in waiting rooms? I know I do!

On Friday evening Tyler got the reminder phone call about his appointments, unfortunately we missed that call. In the message the mentioned a bone marrow biopsy.. WHAT?!! <------that’s what Tyler said. We called back, but they were closed so we had to wait until we got in on Monday. We were a bit nervous thinking about it all weekend, but I kept assuring Tyler it would really be ok (then praying that I knew what I was talking about). I vaguely remember being told that we were making a tentative appointment for one, just in case one last test came in off.  makes sense right?

Monday morning, we get there bright and early for blood work. One of our nurses from the BMT unit was filling in and taking blood. It was so great to see her. She was definitely one of our favorites! We immediately saw the girl who had called us and asked about the bone marrow biopsy. She wasn’t sure, but was determined to find out if Tyler really did need one. Long story short, I was right, he didn’t! We moved forward with appointments.

We had breakfast after the blood draw

We hung out in the 4th floor waiting room something about that extra clean smell brings peace to my soul

We met with Tylers’ doctor (always pleasant)

It took awhile….

His blood counts look fabulously normal

He had an EKG, next time I’m making him put his own stickers on… I think we have it figured out

Tried to pick up the meds

Went and had an Echocardiogram, did you know those take 45 minutes? I sure did fall asleep in a chair in that dark room.

Picked up meds

Listened to an A Capella group

Grabbed a not so fabulous pizza

Went home! And because it’s not a trip to Salt Lake without something crazy happening… On the road back to the freeway, at a stoplight, there was a man laying in the street… LAYING IN THE STREET! He must have fallen. There were people all around him, one lady even brought him a jacket to use as a pillow. really lady? A pillow? How about lifting this guy up and off the street.

We saw a few other people we recognized. It warms my heart to run into them. Everything looks great for Tyler. The medicine is working as it should. His body is responding. We can’t ask for much more.

I am blessed to have a great friend (whom I share a b-day with) who has a sister in law with CML. A few weeks ago we had them over to our house. It’s inspiring to meet other people whose lives are on similar paths except they are ten times the people we will ever be. Her and her husband were beyond awesome and I hope we get to spend more time with them in the future. Her husband was VERY well versed in all things CML. It’s kinda nice to talk with someone who knows so much. He knew a lot of statistics and information we hadn’t heard. We are glad for our friends who brought us together.

Other then that… life is good as usual. We both had birthdays. We are both getting older Tyler more so then me. Sawyer is growing at an unprecedented rate. He does hilarious things daily and is obviously the worlds smartest baby.

We wont be back to Huntsman till next month, so hopefully nothing eventful with Tyler’s health happens in the meantime. or ever again