Mondays appointment went smoothly, and faster then I expected it only took 3 hours, not 4. They did a basic work up of Ty; weight, height, blood work, exam... the usual stuff. We saw a couple of nurses, they all ask the same questions. Nurse M came and talked to us about Tyler's blood. The levels were ok. She felt like everything would be better once we started the meds. His spleen is shrinking and will hopefully be back to normal size by next visit.
Tyler was selected for drug P. The newer, stronger drug. Everyone seems thrilled that he got that drug (probably because it helps with their study a ton to have him on the new drug). But I do feel like they have our best interests at heart as well.
Then came the scary part... talking more about side effects! They told us a couple of big ones to watch out for and how they might present themselves. They also said it would happen within the first 48-72 hours.
We've slept poorly, no scratch that, we haven't slept... We go to bed worried about what will happen during the night. Every muscle twitch, itch, or pain causes seems scary. We are three days in now.
The first night was the worst, my husband isn't sure how to get out of bed quietly. Tues night, a little better except for the charlie horse he got in his calf, which obviously required a good yelp. Last night, once we fell asleep, I actually slept all night, and I'm pretty sure Tyler did too. Honestly, those two nights of sleep seemed worse then when Sawyer was a newborn.
It's been an exhausting couple of days! Poor Sawyer... I've fallen asleep a couple of times while watching him play in his room. Luckily he's not too crazy and can stay out of trouble. Yesterday, he pulled blankets from a basket and put them on top of me. Whose little angel child is this??
Today we are both feeling abnormally well. Tyler told me his cancer must be gone, nice try husband.
Back to the appointment. After meeting with nurse M we then met with Dr. D. He is the kindest man. So soft spoken and calm. We really enjoy meeting with him. He thanked Tyler profusely for taking part in the study. Then we chatted some more about the actual drug and how things should go. Then he left, but not without giving Tyler a hug first!
We have to go back to Huntsman every Monday for the next month. Lots of follow up tests and things to have done.
We are so happy that we haven't had any crazy side effects so far. Hopefully it stays that way.
Tyler has been staying busy catching up with work and friends. It's great to see him back to normal, although I had hoped his cancer would somehow magically make him dislike the xbox... no luck! jk he rarely plays that thing.
His energy level is rising. We tried going for a walk the other night (did I mention this already?) and he made it a whole whopping block! He asks me to walk at a cancer pace. it's a work in progress.
I had a friend stop by who is pregnant and it was funny, and a little surreal, to listen to my husband and her compare maladies. Swollen feet, leg cramps, low energy, always hungry, ultra sounds and more I'm sure. I just had to laugh. There is some comfort in knowing that next time I'm pregnant he will have some extra sympathy for me.
\We joke a lot about using cancer as an excuse in life from now on. It's all jokes, he wouldn't really do that, or so I thought. I found a snake in the backyard a couple days ago. Today I asked him to help me pull a couple bushels of weeds so the stupid snake wouldn't be able to hide. He look at me and said "ohh umm you'll probably have to ask Jordan (our neighbor) to do that" I asked why and he said "well, I do have cancer". ohh brother.
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