Hitting The Proverbial Brick Wall

Greetings Friends & Family!

It's been a few weeks so I thought that I should check in with you all and give an update on how things are going.

Chad had a 15 day break between infusions this time around and as it turned out, he really needed it. I think that the combination of temporarily switching his treatment schedule, the great deal of travel and activities in addition to the heat wave really just ended up being too much and Chad just ran out of gas. He has been even more drained than usual and has easily been sleeping at least 12 hours a day on the days that he doesn't leave the house and is still sleeping through the night. We kept the few plans that we had made in place but we made sure to take a lot of rest breaks. Previously Chad had shown significant improvement in fatigue as more time passed from his disconnection but for the first time that didn't really ever happen. He had been able to take walks for exercise a few mornings a week but could only get just a couple of walks in over the last few weeks. We can't figure out why these last few infusions have been so rough for him, especially since he's on a reduced dosage but things change quickly and often with this disease so I'll just have to keep watching for clues and tracking patterns.

As you may have guessed all of this sleeping has not been favorable to eating and Chad lost some more weight. I'm worried about this because he's also going through a stage where things that he normally likes don't taste very good to him so when he does have an appetite he doesn't enjoy his food so he doesn't eat very much. He is trying though and did okay with a vegetable soup and Tommy's Pizza but almost everything else he's had to sort of choke down. Chad is really not interested in supplementing with Boost but after only having Boost for 44 days who could blame him? I haven't been looking long but it seems that every protein powder I find needs to be mixed with milk or juice and that is too similar to Boost and Ensure for it to seem desirable. If shakes or smoothies are our only option it will have to do but I would love to find a product that I can add to food to help boost calories and protein, if anyone knows of something please let me know. 

Chad started his infusion yesterday and will disconnect tomorrow. His lab work was good, his platelets remain low but not dangerously low so he was cleared for chemotherapy. One side of his port clogged again but they were able to access the other side for treatment and get the medication to clear the clog before we left. As far as appointments go it went pretty smoothly. He's resting now with his pump and hasn't had much nausea so far, just extra tired. We're hopeful that his energy level will improve over the next few days. 

As I mentioned we were able to have some fun over the last few weeks. Those of you who are connected with us on social media likely already know that we celebrated our "Chad's Day" tradition with family at a Columbus Clipper's Game. (Chad's Day is a holiday that Cami invented 6 years ago because she felt that it was unfair that I was celebrated on Mother's Day, her dad was celebrated on Father's Day but there was no day just for Chad. So she created one.) We also had the pleasure of exploring the adorable Cleveland neighborhood of Little Italy. We go to Cleveland often but it was a first time visit to that neighborhood for both of us and we fell in love with the Inn that we stayed at and will definitely go back for another visit. We were able to meet up with family for a short visit while we were there and enjoyed a winning Tribe game the next day. It was a lovely little trip. As with so many things in our lives right now, those fun things could not have happened without the help of others. We won't ever be able to say enough thank you's but we will certainly try. We know how fortunate we are to be surrounded by so many people that love and care for us and want to help us in these special ways. Please know that we treasure all of these experiences together and time spent with all of you. It has been said that the best gift that you can give is the gift of time and that's exactly what you all have given us so from the bottom of our hearts, we thank you.