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What is Synovial Sarcoma Anyway? – Not, really. Maybe next week…

This morning I was all prepared to write a blog with facts. ¬†Facts about Synovial Sarcoma and a bunch of statistics about how rare it is and why it happens and what it does to the body and who knows what if anything. ¬†You know, trying to give you a better picture of what we’re dealing with. ¬†Then it happened. ¬†Like the wave that we all ride in my house everyday, up and down depending on if Chemo feels like being a bitch or not. ¬†The dumb tears came. ¬†Not for anything in particular, just like Trent can’t necessarily put a finger on what makes him feel bad. ¬†He just goes from feeling almost normal to really Trent Resting - Late Februaryshitty. ¬†And it’s always like having a balloon popped in a neighboring room. ¬†You know that the balloon is there, until you forget to remind yourself that it’s there. And it pops. ¬†And you feel like you’ve come out of your skin and it takes forever to shake that rug-jerked feeling. ¬†Duh, the balloon has been there the whole time, stupid. ¬†YOU forgot about it. ¬†It’s was going to pop eventually. ¬†Yes, that. ¬†Every time.

I was simply sitting at my desk during my conference period getting ready to write – thinking I guess – and I couldn’t even put a coherent thought together. ¬†I wish I was someone who could say they blamed so and so for the disease, or I wish I was someone who asked why constantly. ¬†I don’t do that. ¬†Not built that way. ¬† ¬†Seems like feeling this way would be ideal – no misplaced anger or no silly question to be haunted by. ¬†So, why am I jealous? ¬†At least those people have a focus – some kind of cancer-laser beam that they can shoot their emotions at. ¬†Why me? ¬†Why cancer? ¬†Why you? ¬†Why, God, why? Nope – not me. ¬†I’ve even tried that, just not me.¬† I’m still faithful, but dammit, I am sad and I am mad. ¬†I’m sad because as much as we try to fight this bastard, it feels like it’s winning. ¬†Son of a bitch.

After a horrible Friday for Trent – he only knows how he spends the time when he’s alone, I just know when he’s had a rough day. ¬†I know because the relief that I see in his face when I come home is so genuine. ¬†Anyway, after a horrible Friday, ¬†we made to our sweet friends’ baby’s first birthday party with the boys in tow. ¬†We got loved on by some great people, family really. ¬†We had a really decent weekend. ¬†The birthday party really kind of took it out of Trent, but we stayed in Saturday and Sunday and just enjoyed our little family – trying to keep up with the girls as they came and went. ¬†Then yesterday. ¬†Mom either takes Lily to the bus stop on school mornings or gets her going so that someone else can take her and when the weather is rough we try to keep the boys at home instead of riding with her to take Lil. ¬†Yesterday, was very cold here and no reason to get the littles out if we don’t have to so they stayed home with Trent, who was getting up as I was walking out the door to head to work. ¬†My phone battery was dead all day and I didn’t have working charger in my classroom, so I went most of the day without talking to home base. ¬†When I got home yesterday Trent was asleep on the couch. ¬† When he’s like that I wake him from time to time to make sure he doesn’t want to eat or drink anything. ¬†We try to keep the kids a little more quiet because as much as it would make sense for him to sleep in bed I know that he wants to be around everyone even if he’s sleeping. ¬†He continued to sleep through dinner, through tweensies, straight through the night. ¬†I don’t even think he got up to go to the bathroom. ¬†He did get up when it was time for everyone to leave this morning, about 9:30a (we had late start). ¬†I can’t explain to you what it’s like to see your spouse that way. ¬†Especially someone like Trent, who has always been so high energy, involved – the life of the party. ¬†Cancer and chemo, ¬†such a lovely, winning combination. ¬†The tumor in his back is now visible to the uncancertrained-eye. ¬†Sabrinna noticed it last week when Trent was walking around without a shirt on and thought that his back was swollen.

“No, honey. ¬†That’s the tumor.”

“Oh.”

I know what the ones in his lungs look like – I’ve seen them on CT scans. ¬†They tell us not to worry about the big one – it’s the small ones that are the concern. ¬†– The f you say. ¬†‘Don’t worry about the big one.’ ¬†What do you even do when they tell you that, but I can SEE IT GROWING OUT OF HIS BACK. ¬†Bastards. ¬†I know they’re trying to help, believe me. ¬†Much respect for the work that they do, but they sure as hell don’t go home to it everyday or carry it with them everyday. ¬†In their homes or in their bodies.

In any case, Trent tells me via text that he really is feeling better this morning. ¬†Liar. ¬†I love you, Trent, but you’re a liar. ¬†I know you lie because you love us and that’s why we love you. ¬†I know you lie because I love you and I know you better than anyone.

Alas, I digress. ¬†Here is a nifty infographic to tell you a bit more about Synovial Sarcoma. ¬† ¬† I’ll do a medi-post at some point, just not feeling it today.

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As far as treatment is concerned, Trent will likely be admitted for Round six of Ifosfamide with Mesna on Monday. ¬†This is his last round and as happy as I am for him, I know no one is more happy about this than Trent. ¬†Round 5 has been decent to him. ¬†Lots of diarrhea. ¬†Lovely, I know. ¬†Hair is coming and going. ¬†He’s lost some weight but he’s really doing everything that he can to combat that by eating everything he sees when he’s feeling up to it. ¬†He’s gone from about 220lbs to about 195lbs now – not terrible, and he knows I watch his eating like a hawk. ¬†So, it’s midnight peanut butter sandwiches and dipping into gallons of Mocha Almond Blue Bell. ¬†Let me tell you, the struggle is not real until you’re trying to lose weight and you’re married to someone who legitimately needs to gain weight.

***Good news!  There is still a lot of it.

wpid-wp-1424813571222.jpegSabrinna attended a volleyball scouting camp this weekend and did great.  She scored a 43/50, in spite of a bum shoulder.  The school she is very interested in is also very interested in her.  Think about her this week, as she has an MRI on said bum-shoulder.

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Lily continues to be Lily.  She never stops moving.  She competed in volleyball tournament number 2 this weekend and did great.

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Gavin is potty-trained! ¬†Minus diapers at night. ¬†Not too bad considered I know full grown men who still have trouble with wetting the bed. ¬†No, not my husband. ¬†IT appears, we do however, have a gremlin. ¬†If you come over, you know the rules…

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Coley.  Sweet Coley.  Sweet Baby Cole has 2 teeth and is working on a mouth full.  He flies around the house in his walker.  Yes, he uses a walker and he loves it!

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As always, thanks for keeping up with us.  Leave a comment if you like.  Subscribe for updates straight to your email.

2 thoughts on “What is Synovial Sarcoma Anyway? – Not, really. Maybe next week…

  1. Wow, Lily really looks like you! I had to do a double take at that photo because at first glance I thought it was you! Beautiful girls are all grown up!

    Like

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