Sunday, July 17, 2016

Long write?

*blows the dust off of the blog*

*wipes away the spider webs*


It's been about four months, so I figured it's about time to update this! It is really hard to keep up with writing. As much as I love it, I often find myself at a writers block. Last year, chemotherapy gave me monthly update material, now I find it really hard to keep up with monthly updates. Today though I had a sudden urge to want to write, sooo here it goes! First off, I'll give you all an update on the main focus of this blog, my lovely husband, Josh. My husband is a true fighter. He rarely complains. He only takes breaks when desperately needed. But mainly keeps moving along and doesn't allow the cancer to slow him down. Last MRI (which was about a month ago) showed nothing new. He is still stable and the tumor is still there. We have looked into exploring different treatment options offered off of base as well. We are trying to stay clear of random drug trials for the simple fact that we don't want to make his condition worse than it already is. I have witnessed many patients become worse due to the drug trial they were on rather than get better. For now, Josh is in great health, we don't want to add more symptoms into the mix. He has been seizure free for a year and six months and he hasn't experienced any symptoms as a result of the tumor.

So what's going on with us? Well...nothing much really. Aside from maybe the one appointment we go to a month, it's really just us hanging out and spending time with each other. Our medical life has really slowed down. More often than not our days consist of what ever we want to do. It's great that we are fortunate enough to have this time were neither one of us are working and we get to spend all of our time together. Since hockey season ended (boo!) we have been going to Nationals games. While it's not the same exciting game as hockey, the baseball games fill the void until hockey starts again. We have also been going to A LOT of concerts! In April, we went to see The Used preform. We also went to see Pete Davidson from SNL do his stand-up, which was hilarious. For Josh's birthday, I bought him tickets to see Get the Led Out, which is a Led Zepplin tribute band. He has always been a huge fan of Led Zepplin and the chances of us seeing the real group are pretty slim, so a cover band was the second best! This past week we were able to see Mike Posner preform. I was nervous to ask Josh to go with me as he doesn't really like his music. Half way through (and three beers in) I noticed him swaying along with the music and he said he actually had a really good time! This past weekend we also went to Vans Warped Tour. It was our second time together, my fourth one over all. It was amazing. The line up was filled with bands we listened to in high school. We also met New Found Glory and were able to get their signature on their new coffee table book.

 Along with concerts, we have also gone on three trips. Our first one was going rock fishing in the Chesapeake. It was sponsored by the base and Josh was interested in going but was not completely sold on the idea. I went ahead and signed us up. Lately I have noticed he fights me on things that he has never done before. He is stubborn as hell and is very much a creature of habit. So taking him out to fish in the bay for a fish that he has never caught and using equipment he has never used, he was extra stubborn! Surprisingly though, he caught the biggest fish, he reeled it all in on his own. and when we got off of the boat he thanked me fore signing us up. Our second trip, we went sailing with his support group. Once again, he was so annoyed that I signed us up. Personally, I didn't care. I was so excited to go sailing as I have never been. Once again, he embraced the situation and even steered the boat! It made me extremely happy to see how calm and happy he was. Our last trip we took was for our anniversary. We decided to get completely out of Maryland (the one trip he didn't fight me on!) and we picked West Virginia. We rented a suite at a resort for three nights and it was complete heaven. We took a tour of a cave, ate too much food, and lounged in our HUGE tub every single night. It was a much needed break from our reality.

Speaking of our reality, it has finally sunk in that we are homeowners. I get the little reminder every month when our mortgage, water bill, and power bill are due. My parents (who are totally awesome, no sucking up here, they are literally the best!) ripped out all of the carpet out of the house and my dad installed hardwood floors in the rooms where the carpet was. He also painted Josh's room the exact color Josh wanted, really really really green! (I really can't remember the "official" name of the color, but I think they should change it to really freakin' green!) Seeing it in pictures is completely different then seeing it in person. When my dad first painted I kinda hated it. Of course I couldn't tell Josh that, he would have been crushed. But when I saw it in person, I fell in love with it. It's completely Josh and to be honest, it's his room. He's allowed to do whatever he wants to it. Along with the flooring and painting, we have been doing little things here and there. Josh and I went home to Florida for the week of the fourth of July. We were able to tackle the landscaping and do minor fixes around the house. My dad just has to fix the tile and it will be completely move in ready!

Now onto the one annoyance in our lives. Right now we are in the waiting period of the MEB process. In the beginning of June we received his NARSUM, which is basically a run down of him as a patient and all the conditions he will be filing with the VA to receive benefits. Luckily for us, the packet came back perfect. We didn't have to file additional claims or any paperwork to have it changed. It was a huge weight off our chest because I have heard horror stories about that process. So now, our packet has moved it's way up to the VA and we are waiting to hear what Josh's ratings will be. We submitted three conditions; Crohns, Brain Cancer and Epilepsy. There isn't much to do now, just twiddle our thumbs and wait for the VA to give us the go ahead to retire. We are still shooting for October to move home so everyone keep their fingers, toes, and all other body parts crossed that we get to move home then. I am SO ready to move on with our lives!

I really would like to thank all who read this. I know I don't actively post, but I love being able to give you all a glimpse into our lives. It's not glamorous or even really that exciting. However, it is full of experiences and time spent with each other. I have had a few friends tell us that they are jealous of all of the things we get to do and that I really seem to flaunt how awesome our life is. To that I say, screw you. Yes, we get to meet celebrities. Yes, we get free tickets to sporting events. We have been to some pretty cool trips to DC. We have been in places that the general public can't access. But, it's all at the cost of my husband having cancer. It's almost as if people expect us to wallow in our self pity and complain about the cards we have been dealt. That has never been and never will be us. We are grateful for every opportunity that has been given to us, but I would give it all back if it meant my husband didn't have cancer. More than anything, I urge those who have never dealt with this deadly disease to think before they speak. To realize that you have everything we want and to just be grateful for everything you have. Just like us, your entire world can be flipped around due to cancer.

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