Well my week of normalcy was last week and I guess this week it is back to normal. Got some pretty startling news yesterday. We are in the process of getting some additional options on what type of chemo I should be receiving. Well yesterday, I had just pulled into the parking at Helium Trampoline Park for playdate with Jacob when my phone rang, I answered and got some news I was definitely NOT expecting to hear. A new pathologist that had reviewed all my information concluded that my tumor was a grade 3 and not a grade 2. It was like someone had punched me right in the stomach. I had been fighting all along thinking this was a slow growing grade 2 tumor and now this may not be the case. I couldn't and still can't even wrap my head around this. I instantly started crying and cried for just about the entire day. I am still crying now. I wasn't going to even blog about this because it's just someone else's opinion, it may not even be correct, I need to talk with my doctors, hear back on third and fourth opinions but this truly hit me hard. I have tried over and over to compose myself and I am okay for a few minutes and then loose it again. Finally I figured maybe I should blog about it. That has always helped me in the past, get it all out, cry and then move on. So I am hoping that happens with this post, if I even have the courage to publish this.
Apparently Froedtert is reviewing all my biopsy stuff again and I will hopefully hear back from them late this week or early next week. I have an appointment with my doctor next week too so we can discuss all this but honestly, what the hell?! This was supposed to by my month to enjoy some normalcy, forget about all this crap and just enjoy life and now I am sitting here fearful that this is all more serious than we were originally told. It sucks! It's not fair! So yesterday was filled with lots of tears and calls to my current doctors, tomorrow Jamie and I have an hour meeting with Owen's new child psychologist, next week Wednesday Owen goes in for his big WADA test to put the left side of his brain to sleep to test his language, Thursday we meet with my nuero-oncologist to discuss further my tumor and chemo options, Friday we have Owen's 2 hour IEP meeting for kindergarten to make sure everything will be in place to help him succeed next year. You know the phrase "you have a lot on you plate"? Well I feel like someone took our PLATE, threw it and shattered it and handed us the biggest platter ever made and said "hold this, your going to need it for all the shit that is being thrown at you". Owen's IEP is so important to me, to make sure his elementary school has all the information on Owen that he needs, that he has all the help and modifications made within the classroom so that he can thrive there, why can't that be the only thing I need to worry about next week? And the phrase "all this stuff only makes you stronger" well I already WAS strong, I didn't need to be any stronger! It's just a lot and yes I know it's take it day by day but I really can't. I have paperwork to fill out, calls to make, things to research for my days ahead so I can't just worry about today. I have to prepare myself for all my stuff next week.
Yesterday was shitty. A huge thank you to my friend Christen who was at the trampoline park with me when I got the call and my old college roommate Niki who I ran into. I was sobbing and they didn't try and sugar coat things. They were real, cried too and just hugged me and agreed that this f*cking sucks. They told me that yes I am strong but this sucks and isn't fair. It was just what I needed at that moment. People just agreeing with me at how crappy this is and allowing me to be sad and angry and not trying to make me feel better or say it's going to all be okay. So thank you girls.
Okay, I got it all out! I am not even crying anymore. I always end with positive stuff. Although yesterday was really crumby I have some really positive stuff to share too!
Owen was talking SO much this morning! Like more than I have heard him talk in FOREVER! He talked the ENTIRE way to school. Usually I can't get him to say ONE word and his speech was the clearest I have heard it. He was still using the wrong word once in awhile and saying some words out of order but it was the best I have heard him talk in MONTHS! He was mostly talking about the BIG snowman in Frozen named Marshmallow. Owen is scared of him but was talking about him all morning. He was even talking to his friend Maggie in the hallway, apparently Maggie loves Frozen too and they were talking and giggling about all their favorite parts. Then Emily, Owen's speech therapist came out and Owen started talking about his Hulk movie too. Poor Emily, she doesn't have kids yet so she hasn't seen Frozen 8 MILLION times so didn't know every part they were talking about and of course she isn't into The Hulk. I laughed because Owen was telling her about a part in the movie where the Abomination throws the Hulk... between Owen's speech and Emily's lack of knowledge of The Hulk I can see how those conversations could be very difficult. :)
Then I got a text from his physical therapist that Owen was back to jumping with two feet and was super motivated today and persisting at each activity for longer than he has made it in the past.
Then Jacob was SO cute this morning! He goes to before school care on Wednesdays so we drop his stuff in his classroom and then I have to take him to the big room at the end of the hallway. Well we were walking down the hall when Jacob turned back to the classroom, threw his nuk in his backpack and then ran to catch back up with me. I just couldn't believe that he VOLUNTARILY put his nuk away with no one asking! Such a big boy!
Then when I got home, Jamie had written the sweetest note and taped it on the door for me to see when I got home after dropping the boys off just letting me know that he will be by my side every step of the way and to continue being the strong person he knows and loves. What would I do without him.
Well I am glad I typed this, I feel a little better. If you made it this far, thanks for reading and following my journey. Off to take a nap before I need to pick up the boys.