Sunday, August 13, 2017

“Success is not final, failure is not fatal: it is the courage to continue that counts.” - Winston Churchill

Josh finished out round 3 with his IV. Having the port has made this entire process more bearable. He actually doesn't mind the IV injections, which I think a huge part of it is his nurse that administers it. She is so very quiet and polite and over here you have loud mouth Hearndon with no filter and complete disregard to being appropriate. He really likes her but I think its mainly because she laughs at all of his jokes. She has a huge interest in his care though. Up in Maryland we LOVED his oncologist and his team, so this team down here had big shoes to fill. They comfortably slipped into our lives and have made this process so much more bearable. We told her about the nausea Josh is experiencing in the morning. She suggested to give him his pills at 530am that way when he gets out of bed at 8am he will still be under the care of the pills. It works and he hasn't thrown up since she suggested it. Really any problem we bring to them, they figure it out. If one person doesn't know they ask multiple people. We are never treated as a number, he is always seen as a person. We had his appointment with his oncologist last Tuesday and she said his counts were pretty low. He should be in the 100's and he's in the low 80's. She wanted us to redo his blood work as the previous one had been done a week prior and wanted to see if anything had changed. She called the next day and told us to delay chemo a week as his body has not bounced back from the previous cycle. This is expected and it was only a matter of time before this happened. It doesn't mean anything drastic, it just allows Josh's body to rest.

A week and a half ago we met with his new neurologist. He was super nice and we felt really comfortable in his office. Josh and him connected right away and that's always a huge plus for me. He did a full exam on him, bumped up some medications and added a new anti-seizure med to the mix. He agreed with me on my theory of sleep and seizures. The new pill is a sleep aid and a anti-seizure medication in one. Josh started it last week. He took one pill at night and slept through half of the night! Probably the best sleep he's had in so long. He stayed on the one pill for a few days then bumped himself up to two pills. It only equals out to like 14mg but adding the second pill has caused him to actually sleep through the night, something he hasn't done in a very very very long time. He usually gets up at 4-5ish to go to the bathroom, but he's back in bed and usually sleeps until 8am. The only side effect of this pill is that it makes him really groggy in the morning. I think he has slowly gotten used to it but couple days ago he was talking 2-3 naps a day. On top of the sleeping pills, he also has low counts so he is wiped out on a constant basis. Even walking to the bathroom he gets exhausted and has to sit down for a little. He is also experiencing wobbly walking. It's almost a mixture between zombie walking and drunk walking. I have become accustom to grabbing the back of his shirt to walk him around the house. I have been bringing the walker into the house so he can have some independence.

Cancer aside, everything is going pretty well. I am getting out more and leaving Josh at home with my dad. It's given me breaks but I desperately miss him while I am gone. We are always on constant search to do things while keeping in mind his exhausted state. Josh is now apart of a D&D group that meets at our house every other Saturday. It is perfect for him as it is in the comfort of his own home and the guys he plays with are super understanding of his condition and help him along the best they can. It makes me happy to see him happy.

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