Friday, July 21, 2017

life is messy / love is messier

It's lightly raining outside and I have Pandora quietly playing in the background while Josh is taking a nap. I figured this would be the perfect time to sign onto Josh's computer and write a blog post! My last post was May....MAY! As it is now July, I realize that I completely skipped the entire month of June! As of the last blog, I wrote about Josh's birthday, so that's where I'll pick up for this one. June 2nd we celebrated my husband's 30th birthday, the big 3-0! I didn't want to overwhelm him with to many activities so I kept it pretty chill. We spent the morning playing mini golf with his parents. We then went to Ron John where we were complete tourist and bought Ron John shirts and other crap we didn't really need but bought anyway. We got caught in a monsoon of a storm. I would like to say I am being dramatic about that, but it was probably the worst storm I had seen in a long time. The worst part was that we were beach side and apparently their drainage sucks there because the roads were completely flooded. Because of that, it took us a lot longer to get home then usual but we made it. Josh immediately went to sleep and ended up napping way into the afternoon. Later that night, we had my parents, his parents and my brother come over for Procarbozine Tacos (lettuce tacos as some of you know them as) and Key Lime Pie (not that Josh can't have cake, he just REALLY loves Key Lime Pie!). We played Cards Against Humanity and were laughing until our belly's ached and we had tears in our eyes. It was a perfect birthday, nothing to over the top but just right.

During June, Josh was on cycle 2 of his chemo regiment. Out of the three types of chemotherapy he is on, he tolerates two of them pretty well. The Lomustine, which is 4 pills to start the cycle, is a piece of cake. He takes them all at once (or shotguns them as we call it, lol) and while he can feel them sitting in his stomach, it really doesn't offer up many side effects. The Vincristine (IV Chemo) is pretty easy to do now that he has a port. It's a 10 minute IV and really offers up no side effects aside from Josh being pretty tired afterwards. The Procarbazine though is the one that kicks him in the ass every cycle. This pill is two weeks long and comes with the strict diet. The diet itself we have figured out and we essentially eat the same things for two whole weeks but it's food I know won't make him sick. The last cycle, Josh experienced minor seizures. This cycle, he experienced some more and we once again ended up in the hospital because of them. He had one late one Thursday night and early Friday morning. (I see a pattern in them. They usually happen around 10pm or 3am and they often happen on a Thursday or Friday night, typically at the end of his procarbazine cycle.) My rule is; if he has three within 24 hrs, we go to the hospital. Essentially all Friday I was prepared for more. He ended up having one while he was taking the dogs outside that Friday morning. This one was odd because he was fully awake and standing outside. He felt it coming on and he was able to lean against the door and go through the more intense part of the seizure. I was out front in the garage with my Mom and just happened to look into the dining room where I saw him walking inside essentially looking like a zombie. I knew right away what was happening but I was completely shocked that he was WALKING during a seizure. I was able to grab him and walk him to the chair. He rebooted and came back to me. He swore up and down that he was outside with the dogs for thirty minutes, when in fact it was only a minute or two.

He took it pretty easy for the rest of the day. I should have followed my rule, 3 in 24hrs, but I didn't. He was exhausted and just wanted to sleep, so I let him do that. He woke up around 4pm that day and came out to the living room to watch TV with me. We were watching a show and while I was laughing at it, I looked over at him and his thumb was in a continuous loop on his phone and he was completely checked out...seizure number 4 had just happened. He fought so hard, but I ultimately dragged him to the hospital just to get checked out. We went to Holmes because they have a neuro surgeon on call in case he had a brain bleed. Surprisingly we got right into the ER and Josh was admitted within 30 minutes. They wanted to run a bunch of tests (x-ray, ct scan, blood work) and wanted to rule out a bunch of causes. All while this was happening, I held my tongue because I knew what was causing the seizures, it's the tumor. Even though I knew this, I also knew that four seizures in one day is not normal and I wanted to be in place that I knew could help him if more were to come about. While waiting for the results to come back, Josh had yet again, another seizure. After this one, the nurse gave him some Lorazepam and he passed out from complete exhaustion. Since then, he has had one or two seizures, nothing to crazy and definitely not in the same day. Five seizures in one day isn't his record, but it's pretty close.

Often there are times where I have to put the wife hat away and put on the caregiver hat. This is one that I really don't like. As his wife, I want to respect him and his decisions he makes. As his caregiver, I have to put my foot down and force him to do something he doesn't want to. It breaks my heart every time. While I was getting him dressed and dragging him to the car to take him to the hospital, he was being very spiteful. In the mess of it all, I'm sure he said he hated me. I took five seconds in the closet and balled my eyes out. It was a mixture of what he was saying to me and the fear I had about the entire situation. I finally composed my self, wiped my tears away and walked to the car. During the car ride he apologized a million times over and he helped heal my broken heart. It's difficult at times, separating the two roles I play. We often forget what it feels like to be married. We often forget that we are husband and wife, not just patient and caregiver. It's those moments where we forget that I hate this cancer so much. But it's often in those moments that I am reminded of the sweet, loving, caring man I married and I am grateful for everything I have in that moment.

On June 16th, Josh finished his second round of chemotherapy. He received his blood work results and they showed that he is anemic, completely expected. In his time off between cycle two and starting cycle three he beefed up (literally) on red meat, fish, spinach, and pretty much anything else he could get his hands on, haha. The two weeks off between chemo are like heaven. We can eat what we want, when we want, and we can even go out to eat if we want! During the cycle, while on the diet, we have been known to fantasize about food. I have seen Josh salivating over a Taco Bell or a Red Lobster commercial, lol. While I am not completely locked into this diet, I try really hard to basically eat whatever he eats. Though I do sneak a piece of cheese or a piece of chocolate from time to time, I really try hard to not eat anything he doesn't, especially right in front of him. The diet is so strict, his heart breaks if I eat something he can't and I feel bad when I do. I learned my lesson to not even mention it if I do eat something he can't. It's a disappointment he can't handle. Sounds dramatic? It is, this guy LOVES food haha.

Cycle number three started on June 30th. He shotgunned his starter pills and did his IV on July 7th. So far, so good. He ended procarbozine last night and is counting down the days until he can have "real food" again. We typically era on the side of caution when he ends procarbazine. He usually waits a week or so before eating something off of the diet because the pills are delayed acting and are still in his system. We have been trying to get his random seizures under control. We are in the process of switching neurologist (once again..third times a charm, right) and in the mean time his oncologist gave us a prescription of Lorazepam (ativan) to use at home to control them. It's the lowest dose you can get and he only takes them when he's had a seizure or he's having a tough time sleeping. We are starting to realize that seizures often come on days when he hasn't had adequate sleep. We finally were able to make an appointment with a non-Va neurologist and he's local to us. We are meeting with him next Thursday and hopefully he can help us in figuring out what is going on with the seizures. It could just be a small bump up in his medication but we shall see.

On a completely unrelated note, I'm sure many of you have noticed Josh's unusual poses in these pictures. What started out as just a joke, has become something he's done in every picture dealing with cancer. While it's offensive to some, to us it is so much more. It's crude, yes, but have you met my husband?! He swears like a sailor and has the dirty mind of a teenager. It's also a huge eff you to cancer. While we were doing Josh's dream day offered by Living the Dream, we were introduced to the company Fxck Cancer. If you haven't yet, check them out. I'll leave a link right here. Their motto is "We are sorry if you are offended or have a problem with the word fxck. We are offended and have a problem with the word cancer." It was in big letters on a banner above their booth. It was a great quote and an even better motto. Josh has taken that and put that in the pictures I take of him doing cancer related stuff. It's not to offend anyone, it's humorous and it's a way for Josh to give a big eff you to this disease.

Tuesday, May 23, 2017

Life is tough, but then again so are you

I often find myself forgetting my husband has cancer. Crazy right? It's like, I know he has it, I am well aware. But at the same time he doesn't show the signs like Hollywood has lead us to believe. He isn't this frail human relying on me 24/7. He isn't bald. He isn't pale. He eats normal food and at normal times. There are small reminders though. Moments when it hits me that he is sick. A small moment like the collection of pills he has to take morning and night. The moments when he is so tired from just simply walking around the grocery store. Moments when he has unexplained seizures. I often believe that other people, friends and family, tend to forget he has cancer as well. I can't count how many messages I get when he starts a new round of chemo and people are "just checking in." However they don't seem to bat an eye on the down times of chemo. Those are the moments when he is fighting just as hard as he is when he's on chemo. I'll be honest, I forget too. I hug him without thinking. I went to give him a kiss this morning and he turned away so I would kiss his cheek. I watch him take the pills. I see the effects of the medication and yet I am still treating him as if he is my normal, healthy husband. I guess some where deep inside of me, I am praying that this is all a dream. 2 years later, and I pray it's still a dream. I actually forgot on Friday that he was going to start his second round of chemotherapy. I forgot. Not him, but me. I silently scolded myself because I couldn't imagine that I actually forgot. I take my job as his caregiver very seriously. I never miss an appointment, I know every doctors name and specialty, I know every medication he is on and the exact dosage, etc etc. I take pride in it, knowing that I am helping to make his life just a little bit easier. He ended his first round of chemotherapy on May 5th. I must say, he took this chemo like a champ. He did exactly what he was supposed to do and stuck so strictly to the diet that once he was off it, he actually asked me to continue it. We both actually benefited from the diet, he lost 9lbs and I'm sure I lost weight too. (ps. I don't keep a scale in my house) But aside from the weight lost, we both felt really good. We are both getting a good nights sleep and we don't feel sluggish throughout the day. As far as the chemo goes, Josh didn't feel much nausea and though he was tired, he really tried to power through a lot of it. I have to admire him for his strength, he doesn't allow things to get him down.

During his last IV treatment, we were told that his tumor has progressed a little. Not to shocking to us and we knew that was already happening. But this minor progression is the cause of the new seizures. If you follow me on facebook, you know that he experienced three seizures within 24hrs. He had his typical 10:30pm seizure, followed by one at 3am. I didn't think to much of it because this wasn't completely unusual. Later that day, we had a therapy appointment at the VA at 3pm. In the middle of the appointment, the therapist had to leave to help another patient. Josh and I were just sitting there waiting and he had a seizure. Part of me was relieved because FINALLY someone other than me was going to witness this seizure AND we were at a hospital already, what a better place to have a seizure at?! They took him to the triage center at the VA clinic to have him evaluated. They decided that they needed to send him to the nearest hospital so he could have a CT scan done to make sure he wasn't experiencing a brain bleed. After a few hours in the ER, the CT scan showed no brain bleed and he was free to go home. Since then he has been having very minor seizures. Still at night and still very quick. Yesterday we met with a new neurologist (we had one he had only seen once and he really didn't like him. They referred us to a new doctor only to find out the one Josh doesn't like is the epilepsy specialist. Go. Figure.) and he told us that the new seizures are caused by the progression in his tumor. I asked if it was common that he keeps having them at night and he said it is very common. Apparently Josh is using a different part of his brain at night (well duh, like everyone else does, haha) and while he is asleep is when the brain is getting tormented by the tumor. So he upped his medication and ordered Josh to have an EEG done. Ironically he has seizures and yet we have never had an EEG done on him! So this up coming Monday, we will be staying up all night so he can have his EGG done on Tuesday.

This past Friday Josh started his second round of chemotherapy. He took the four pills of Lomustine and is on a chemo break until his IV and first dose of procarbazine. He is scheduled to have a port placed in his chest so that he can receive the IV's a little bit more comfortably. The chemotherapy he receives damages his veins so they have to do it through an artery. Josh is already a really hard stick so this last IV treatment they had to call in the IV team to stick him. While it was cool to watch, (they did a ultrasound on his arm and the needle glows so they can tell they have it in right) he realized pretty quickly he didn't want this extra step added onto his already long day. He gets the IV twice every cycle and we are set to have nine cycles done. Having the port placed is just the logical thing to do. After his IV chemo, he starts procarbazine and the diet again for two weeks. This chemo cycle falls right on his birthday, which I really hate. It will be his 30th, and I was so excited to do something big this year. Because he's on procarbazine though, that means we can't go out to dinner, we can't have a ton of people over and he can't have anything not on his diet. I always try to make his birthdays special and I tend to go over board, I can't help it though, I look at his birthday as a big deal. So this year it will be spent quietly at home, we will probably play some board games with family, do a procarbazine friendly dinner and he has requested that I make him a key lime pie (which surprisingly he can  have!). While it won't be the blow out I wanted to do, I think he will love it just the same.

Wednesday, April 19, 2017

/ together we can do it / I'm gonna love you through it.

I apologize to my little neglected blog! I would like to blame lack of inspiration and drive to write, but in all reality it's just pure laziness. My last post was in February and since then a lot has changed. First and foremost, I turned 28! Woohoo! My biggest fear at the time was being 27. I'm sure most of you have heard of the 27 club, Jimi Hendrix, Janis Joplin and Jim Morrison all died at the age of 27 along with Kurt Cobain and countless other celebrities. (it's actually really interesting, if you haven't, you should look into it) I remember the day I turned 27 I kept telling Josh that I didn't want to do it, he of course said I had no choice. It was an irrational fear but in my mind I knew something terrible would happen on year 27. I had a friend who passed away when he was 27. Josh was diagnosed when he was 27. The entire year I was scared and I honestly saw my doctor more times last year than I have in years past. But now that I am 28 I realized that it was stupid to put so much emphasis on a number. It's clear in this world that it doesn't matter your age, things will happen without any reason. Years pass and things just happen, that is life. So we celebrated my birthday in a low key fashion. Josh and I received a year pass to the zoo from my parents for our anniversary so we spent the day walking around the zoo and then met up with my family for dinner. It was a perfect day.

A lot of you have seen us checking in to the VA hospital. When we first moved here we were waiting...and waiting...and waiting for his DD 214. (we surprisingly STILL don't have it!) We were under the assumption that we couldn't go to the VA without it so we delayed treatment by almost two months waiting for this piece of paper. In the middle of March I got so fed up waiting for this paper to arrive (still hasn't) that I had Josh just call the VA and see if we can get in. Low and behold, we could! They don't need the DD 214 to do treatment! March 22 we had our first appointment with the VA. He met with his primary care doctor and she was able to refer us to an oncologist and a neurologist. We were spoiled in Maryland because Josh's oncologist was also a neurologist. It is VERY hard to find an oncologist that specializes in neurology and the other way around. It's a rare field but his doctor in Maryland had referred us to a doctor in Orlando that is in fact one of these rare doctors. While meeting with his primary doctor, we told her about the doctor in Orlando and she said she would see what she could do. A week later, we had an appointment with an oncologist in Orlando, who works with the VA, not the doctor we wanted. I told Josh to just give this doctor a shot, if he hated them we would go private and use Tricare (ps. I love that he can do that. If he doesn't like the doctor the VA gives, he has tricare that can pick a doctor for him. It's great having options!) We went to the VA in Orlando and met with his oncologist, who we fell in love with, and who we found out works with the rare doctor! She did a year of residency under him and she is in constant contact with him. She assured us if there is anything she doesn't know about she will consult him, which gave us a sigh of relief. So for now, Josh is being treated by the oncology department in Orlando VA. Viera VA is his home VA so he goes there for everything else he needs (blood work, MRI, and primary care) It was REALLY hard leaving his team in Maryland. We loved all of his doctors and I never thought I would find that comfort level again. I know it's the early stages of everything, but I love his oncology team here too. Surprisingly it's an entire team of women, which is ironic because his last team in Maryland, aside from his nurse practitioner, was an entire team of men.

So whats new with the cancer? Nothing crazy. Josh has been experiencing "mini" seizures at night. They often come around 10-1030 pm but they are not consistent by any means. Sometimes he will go a week or two without nothing and then they will randomly start happening. I say "mini" because these are the shortest seizures I have ever seen. If you remember a couple years back when he was first diagnosed, he was having what I call "face drooping" seizures. These ones would make the left side of his face droop and he would "check out" for at least 4-5 minutes and then he would have to reboot his brain and come back to reality. The doctor described those like restarting a computer, so you can imagine how they look. These most recent ones though are like a power bump. Like I said, they keep happening at night (go figure, lol) and they are so short. He will make a noise (it's a very distinctive noise, so I have grown to know that noise and know that it means a seizure) and then he will start repeating over and over "I'm okay, I'm okay." I don't know if it's a mantra to keep himself calm or to keep me calm, but surprisingly it works. I usually have time to wake up, go across the room and turn on the light before the seizure is gone and he is in the "coming back" phase. It's odd as hell but I thank the lord it's not full blown seizures, those things are scary and I hate them. Because of the seizures though is why we started pushing treatment. The seizures could be caused by a numerous amount of things; stress, new growth, he could have developed a tolerance to Keppra, and the list goes on. I'm no doctor, but I have been around this long enough to know that's it's something dealing with medication or a new growth. He is capped out on dosage for Keppra so they added a new anti-seizure medication. So far since starting he's only had two mini seizures. His doctor in Maryland said the moment he starts showing neurological signs, we will start chemotherapy. So, that is where we are now.

He started chemotherapy on April 7th. This chemotherapy is different than the previous one he took in 2015. This chemo has three different treatments to it, where as last time it was all the same drug. The cycle won't be the same date every time because his blood work effects it all but here is a base line of how things work.
  • April 7th he took Lomustine. He took all of the pills at once and was "done" until Friday. 
  • Friday the 14th he received Vincristine in IV form. It's a plant based chemotherapy so we had a lot of laughs about that. It's a 10 minute infusion which he did great on.
  • Friday the 14th he also started Procarbazine. If you remember in one of post I wrote about a strict diet? Well this is the pill that requires it. He is on that until April 28th.
  • On May 5th he goes back in to get Vincristine again. (and I think, I could be wrong, but I think that ends out the first cycle)

So far he has taken the pills like a champ. The Lomustine was easy peasy as he only had to take it once and was able to eat whatever he wanted. The Vincristine was easy as well, he just didn't like the fact that they had to put the IV in his forearm (a port might come later on down the line, he is torn on having one but I think it will help a lot). The procarbazine is the pain in the ass. It is considered an MAOI (monoamine oxidase inhibitor) which breaks down the excess tyramine in the body. Tyramine is an amino acid that helps regulate your blood pressure, it's found naturally in your body as well as the food you eat. So we (which includes Josh, me, and my mom at dinner time lol) are on a low tyramine diet. I was terrified of this diet and I remember when we first were told about it I wanted nothing to do with it. It scared the crap out of me knowing that if he ate one wrong thing his body would experience extreme side effects of high blood pressure. I did a ton of research, talked to his doctors, and called in a dietitian to help us. Josh and I knew a guy in Maryland that had done the same chemo regiment and he ate nothing but cereal for two whole weeks. Knowing my husband and his love of food, I knew that wasn't going to work. Through almost two weeks of research I have developed a diet plan for him.

The diet itself isn't really that hard, it's basically a low sodium diet mixed in with the foods you should absolutely avoid, which are fermented, cured, and processed foods. A lot of it is random things he can't eat, like sauerkraut and soy based products. It also is based on how the food is prepared, he has to stay away from buffet type restaurants (which we are staying away from all restaurants in general) and he has to eat the meat within 2 days of buying it. He has to eat only fresh foods and has to stay away from bruised fruits and vegetables. So far, he's doing really well. He had to give up soy milk (which I am sure he is okay with, lol) and went back to 1% and he has given up all other cheese except provolone which he is allowed to have because it's pasteurized. The biggest disappointment is no chocolate! But, he's found out he likes sherbert, he can have popcorn, and he is eating kiwi's like crazy. So far (not really related to the diet, more like from the start of chemo) he has lost 4lbs. I'm interested to see how much we lose considering we are only eating at home (our bank account LOVES that!) and we are rarely eating any processed foods. As far as side effects, he hasn't really had any. He takes anti-nausea 30 mins prior to any chemotherapy and it's doing it's job. He has minor fatigue but nothing like he had with last chemotherapy. He does have a wheel chair and he is required to wear a mask when he is out in public. He spends a majority of his time at home in "isolation" and only goes out when he has to in order to keep himself from getting sick. The new Mass Effect game is keeping him entertained as well as Lego, puzzles, Netflix and movies.

I will try to update this more as I really do love writing it. It's nice to have an outlet as well as really show people the reality of our situation. Most people often forget he still has cancer. We don't look for sympathy and I hate pity parties, but I love updating and letting people know about whats going on. Josh and I are doing great and he will continue to kick ass!

Tuesday, February 14, 2017

Familiar Landscapes

"I'm on my way, to a coast
where I know the roads like the back of my hand
familiar landscapes"

One of my all time favorite bands is New Found Glory. I have listened to them since high school and have seen them probably around 8 times. Gearing up for the trip home, I decided to load all of our music onto a "community ipod" one that Josh and I both share that has common music we both like. I of course added my entire NFG library and this particular song, Familiar Landscapes, really hit home for me. Of course being a die hard fan, this isn't my first time hearing it, but this was the first time that it really applied to me. After 10 years (almost 6 years for me) we were finally moving home and we were getting back to our familiar landscapes. I feel like in this blog I will be doing a lot of back tracking as time has passed since all this has happened. In order to keep it going with "monthly" post (which I will try to get back to do more often!) I will have to go back to January and start from the beginning. 

Like with any change of duty station, you have to check out of the current duty station before you can progress with your move. It's a lengthy process and often times really annoying. Now, we had to do that, but also incorporating Josh retiring. Talk about a HUGE headache. Surprisingly we were able to complete the entire check out in about a month and a half. Once our check out was done, we finalized appointments and made sure that Josh had a hefty supply of anti-seizure medication to get him through the time between being activity duty and receiving treatment once retired. Once that was all finalized we had to work on getting the U-haul, packing up the entire apartment and planning our trip down from Maryland to Florida. We also had to say our final goodbyes to all that helped us while we were in Maryland. From friends we made, the doctors we had and the military personal we had to thank them all. In one way shape or form, they all played a part in our journey. Some were harder to say goodbye to and I often found myself second guessing our decision to leave. But, in the end, we did it. On January 23rd we drove off base for the very last time. We had a U-haul, our car, and my parents in tow and we were head to Florida...with a minor detour to Atlanta so Josh could go to their aquarium!

Months prior to making this drive, I kept saying I'm not looking forward to it. We had originally planned to drive until we couldn't anymore, spend the night, and drive some more. It's actually a 15 hr drive and I have never driven that long let alone wanted to do it in one straight shot. As we got closer to us making the move, Josh mentioned that he really wanted to go to the Georgia aquarium. For those that don't know, there are only two aquariums in the world that have whale sharks, one is in Japan and the other one is in, you guessed it, Georgia. So he was really (and I mean REALLY) anxious to see it. I asked my parents and we all know they would move mountains for Josh so it was a no brainier decision and we added stopping in Atlanta to our trip. We drove from Maryland to Charlotte North Carolina, which was only six hours. We spent the night and drove to Atlanta, which was three hours and hung out at the hotel the rest of the night. The next morning we took an Uber (something I have never done but was super convenient!) to the Georgia aquarium. We have become slight aquarium snobs as we have been to a bunch of them over the past couple years. The New Orleans aquarium is one of our favorites as well as the one in Baltimore. But the New Jersey aquarium and the Virginia one were not up to par for us. We went with low expectations, but it's really hard to not impress Josh he loves everything with fish. We walked around to every single one of their exhibits and loved every single one. Our only complaint was that there was no African Cicilids, lol. We hung out at the whale shark tank a little bit longer than normal, it was just that amazing. The picture next to this paragraph is from that tank. It was massive, probably one of the biggest tanks in an aquarium that we have seen. Josh just sat there in amazement. He was so happy the entire day and it made our little detour so worth it. The next day we packed up the car and finished out our trip home. It was the longest leg of our drive, 8 hours. But Josh cranked up the music and we played our word game to make the time go by faster. That night we arrived to our house, unloaded the U-haul and literally fell into bed. I think that was the best sleep I had the entire month of January. 

On January 28th, Josh officially retired. Being that we had just drove down and my house was a complete wreck, we didn't have a party. We did have a small dinner at his favorite place with his aunt, my parents, and a family friend (Hi, Dawn!) and it was perfect. Of course I went over board and a little extra with balloons, a drinking chalice and everyone wore retirement beads but I thought, who cares, you only retire from the military once! Once life settles down, I do plan on giving him a proper retirement party. I do think it's something that should be celebrated. He did 10 years, I think he needs to properly say goodbye to that chapter in his life. It's been almost a month now and that still hasn't really sunk in yet. I joke around with Josh when we pass retirement homes or senior citizen community halls that he needs to go and be around "his people" and yesterday at lunch we were literally the youngest people in the restaurant, I kept telling him that he fits in so well with the retirement crowd. Joking aside, it really has been a huge adjustment for the both of us. I'm prepping for a our garage sale and I found all of my Navy wife shirts I had packed away in storage. I got rid of a majority of them because I kept saying to myself, that's no longer my title. I no longer refer to myself as a Navy wife, a title I have held for almost seven years. When we first got married, that was the title I wanted. I was so proud of him and I loved telling people that my husband was in the Navy. Now, I look at it and I am proud of all that we have done. I'm proud that I was able to stand among the strongest women (and men) I know. I am thankful for it as it brought me so many memories and allowed me to meet so many amazing people.

The next week we spent unpacking and putting things away. We also got the phone call that our stuff was FINALLY being released from storage. Out of everything we had to do for the move, that was the biggest annoyance. We found out in the middle of the entire process that they actually had moved our stuff from Norfolk VA to Suffolk so the company that we had been working with on submitting our paper work actually kicked it back because our stuff wasn't actually in their possession anymore! After going round and round and making a ton of phone calls we finally had it delivered. It was like Christmas in February when our stuff finally arrived. If you all remember, we didn't pack up our house in Italy. We had to immediately get off the island and head to Maryland. Because of this, we had really forgotten all that we owned in Italy and duty stations prior. Every box we opened we were like "OMG! Do you remember this!?" It has been so much fun reconnecting with our stuff and it all fits so perfectly in our house. Since delivery, we have spent day and night unpacking our stuff. We have officially finished unpacking all of the boxes and this weekend we will be having a huge garage sale to sell everything. 

Right now, treatment is on hold. We were told by our doctors that we had some wiggle room with starting chemotherapy. I personally think it's good for Josh, he gets to settle into his house and take some "me"time before starting treatment. We are waiting for his DD 214 and once that comes in, we will start connecting him with doctors and getting him back in for his treatment. For now, he's happy just hanging out with his dog and spending time in his house. As for us, we are loving being home. When we left so many years ago, we were anxious to get out and see the world. Now that we have done that, we are ready to be back home. It isn't until you have been in some scary situations that you realize how much you miss it.

Sunday, November 27, 2016

Awful, Beautiful Life

My husband has served in the Navy for 10 years. I'll be honest, it took me years to adjust to this lifestyle. In my defense, I was seventeen years old when he enlisted and I was twenty when I became his wife. I grew up fast, not because I wanted to, but because I had to. I was thrown into a world that was completely foreign to me. Being that neither one of us grew up as a military brat, we were navigating this new world completely on our own. I learned very quickly that I have no control over what happens in my life. He missed anniversaries, birthdays, and countless holidays. I was always alone as he was always gone. We have done our fair share of moves and my husband has deployed three times. I have always been proud to be a military wife. It gave me a different sense of pride in my husband. I was the only one in my group of friends that was with someone in the military. It made me special. The major thing that was a constant occurrence in our lives was the fact that we could never really talk about what was actually going on in our lives. My husband is an IT, so we never talked about what his job entailed but along with that, we rarely talked about big changes in our lives (deployment dates, homecoming dates...dates in general) partly because of security reasons, but mainly because things are always subjected to change. I can't could how many times things would be going one way and then bam, within a few hours the entire plan has changed.

So why am I writing about this? Well, this life that we have grown to know, the life we have grown together into, is ending in the next few months. I know, it's a surprise to us too. If you think back to my last post, I had terrible news. Josh's tumor had spread and they were to cancel our VA board and his medical retirement. Well, things have changed. Literally in a few days our life flipped around and we were finally given good news. After that post, Josh walked in Tuesday morning to muster and his liaison between us and the med board handed him his VA ratings! He came home, handed them to me and we both just sat there in disbelief. I kept telling him "They were supposed to cancel these! What the hell!"After months and months of waiting, I was actually pissed off that they didn't get canceled! Go figure, lol. After collecting ourselves, we walked over to Navy Safe Harbor to see what our options were. I had assumed that the results held no value since they were supposed to be canceled. NOPE! We were told that if we wanted to accept the finds, we could and we could actually go home! We of course didn't want to make such a huge decision right away so we went home to weigh our options. You are allowed 10 days to either accept or decline your ratings. That mean't we had 10 days to get our life in order and develop a plan. Our first order of business was to get Josh's oncologist on board. I was nervous to do this as we had already started planning on starting another round of chemotherapy. Luckily for us, his doctor is very understanding and he always treats his patients with their best interest at hand. So, I had the daunting task of asking for his professional opinion. We could stay up here for almost two years and have Josh go through another round of chemotherapy, in a place that we honestly hate OR go home and have him be happy going through chemotherapy around friends, family, and in our house with our dog. Easy choice right? Well, we weighed more than just that. We have fantastic doctors up here and though we hate this place, we are offered way more medical advances then what we would find in small town Palm Bay. Honestly, it was down to stay here and have great doctors but be miserable, or go home, be happy and still get a great doctor. So I sent the best email of my life to his oncologist. I pleaded our case. His doctor emailed me back hours later and had no objection to us going home. He even offered up a referral for a doctor in Orlando and a treatment plan. Along with that, he set us up with a second opinion with a Oncologist at Johns Hopkins as well as an appointment at NIH to be placed in the system for drug trials.

The appointment at Johns Hopkins was with a colleague of our doctor. We were mainly there to just get a second opinion, what our options were, and if he agreed that we should go home to Florida or not. If you saw on Facebook, I was really into this doctor. He explained a lot of things to us, a lot more in detail about Josh's cancer and the treatment options offered to him. My husband though, was more into how cool the toilets were at the hospital, haha. All in all the doctor didn't tell us anything we didn't already know, except for the fact that Josh has a slow growing tumor and that he thinks we will be okay with delaying chemotherapy for a couple of months. Our appointment to NIH was nothing crazy (and their bathrooms weren't super cool!) We met with a doctor that said Josh will qualify for a drug trial coming out later next year. However, this drug trial is only offered up here so that would mean us having to come back up here for treatment. While we are not completely apposed to the drug trials, Josh's body responded really well to the first round of chemotherapy. Along with that, Josh is considered very healthy aside from the cancer and crohns. A drug trial could make this worse. It could cause new symptoms or make him even more sick. (Josh's edit: Even though the bathrooms weren't cool, they had two huge fish tanks in the admissions and clinic area that were pretty freakin' cool. It made up for their bathrooms not being cool)

So we weighed our options, talked it over with a lawyer, and we finally came to a decision. On Monday, November 14th Josh signed his ratings. He received a 100% on both the VA side and the DOD side. He will get tricare for life and he will receive 75% of his base pay for the rest of his life. I honestly feel as if a weight has been lifted off of our shoulders. The next month or so will fly by and soon enough we will be home in Florida. Josh has to do the normal check out but it shouldn't be to crazy. We are so anxious to get home and move into our house!

This past week was Thanksgiving. We were able to have my mom fly up here to celebrate it with us and my brother's family. Last Tuesday we had an appointment with Josh's oncologist to meet up with him and discuss what the results were from our second opinions. He actually wanted to start Josh on chemotherapy this up coming Tuesday and we decided against it. I strongly feel that Josh needs to celebrate Thanksgiving and Christmas on his terms. Both doctors agree that we can wait a month or two so Josh will start treatment when we move home or at the latest, February. Thanksgiving was great and I was so happy to be surrounded by family. In two weeks, Josh and I will be flying home to spend Christmas in Florida. We will be there for 10 days and I am so excited to be hosting dinner at our house.

Above all else, the one thing that this cancer has taught me is that you can never plan for anything. The moment you feel as if you have a routine down and you can take a breath, life throws a wrench into all of your planning and you're scrambling to get your life back in order. While most people look at this situation as a daunting task, I have grown accustomed to it. My life is full of ups and downs, twist and turns and it is never a dull moment. For that I am thankful. For my husband I am thankful. And for this time I have with him, I am forever thankful.

Thursday, October 27, 2016

Life sucks sometimes

It's amazing to me how one thirty minute appointment can flip your entire world upside down. You would think after being in the thick of it, we would be used to devastating news, but from personal experience I can say, you never really get used to it. Before I dive into this life altering news, I'll give you all a back story. Last Tuesday (Oct 18th) we got news that Josh was approved for TAD orders. This was something that has been in the works for MONTHS..when I say months, I truly mean it. His command finally got it push through and they were allowing us to go home and wait until Josh's VA results came in. We were so excited as it was one step closer to moving on with our lives. We packed some of our stuff up from our apartment and had it shipped down to our house. I had started looking at schools to apply for my graduate degree and had spoken to my mom about working with her part time. The only thing left to get these orders finalized was to have a few signatures. We had to have the approval of his oncologist, his Navy safe Harbor rep, and his VA liaison. We made an appointment to see his oncologist and on Sunday Oct 23, Josh did his two month check up MRI at 4am. Our appointment with his oncologist was this past Tuesday. We walked in with high hopes, considering every past MRI scan Josh passed with flying colors. We were excited because all we needed was these three signatures and we could book our flight home.

Walking into the room, I immediately knew something was wrong. Josh's oncologist (we will call him Dr. T) and him have a great relationship (as everyone who pretty much does when they meet Josh). They usually banter back and forth about music, videogames, and movies. Josh is always wearing either a really nerdy shirt (star wars are his favorite) or something music related. Dr. T has known Josh from the very beginning and has always made it a point to make Josh feel welcomed and not as just another patient. This particular day the appointment started off as any other appointment but it felt forced. It felt as if he was softening the blow. The moment he brought up the scans, I knew something was wrong. We usually review the scans later on in the appointment or maybe sometimes not at all if there is nothing to report back. This time however, the scans were up. Josh's brain was plastered on the screen for all to see. Now, I am not doctor. I don't spout off medical jargon and I don't claim to know what words mean or what particular conditions are. All I can say is that his scan scared the hell out of me. We all know that Josh has a tumor growing in his left side of his brain. What size it is, I have no clue. I'm sure I could ask, but honestly I don't want to know. I think if I did, I would obsess over it. So this tumor that is there has decided to spread it's ass over to the right side of his brain, causing a new growth. Again, I have no idea how big that one is BUT what I do know is that it's new. We are talking like months new. Dr. T brought up the scan from August and it wasn't there (or maybe it was, I ain't no doctor) but from what he says it wasn't noticeable. So in two months, this tumor has spread over to the right side of his brain. My trooper of a husband took the news as well as he could. He didn't break down and cry (yet) he just held his composure and made it through the appointment. We talked treatment options and most impacting, Dr. T told us to cancel the orders. Once out of the oncology unit, we sat in the front of the hospital and just cried. Dealing with this disease has made us strong but this particular news took the rug right out from under us.

So what does this mean? Well first off, Josh has had no symptoms of this new growth. He hasn't had a seizure in almost two years (knock on wood) and in the past two months has only had one or two headaches. Nothing crazy. No tall tail signs, so these results were a huge slap in the face. Dr. T offered us three options.

  • Do temozolomide. This was the chemotherapy he did for a year last year. It worked really well but Dr. T would want to up his dose. 
  • Do another form of chemotherapy (I don't remember the name and googling it brings me to all types of prescription names). This one would be in a high dose, probably terrible side effects and it also comes with a very strict diet. Super strict. Like annoyingly strict.
  • Drug trial at John Hopkins. Suprise! My husband has a very rare brain cancer. Like rare of the rare, so he never qualifies for a drug trial and actually this trial isn't for the particular cancer it's more for the mutation in said cancer. We don't know if he fully qualified or even what stage the drug trial is in but Dr. T seems hopeful. 
For now, we are waiting on Dr. T to go to a tumor board where he will discuss Josh's case with other doctors and see what they bring to the table. There is also a chance that Josh might have to go back in for a brain biopsy. This will only happen if there isn't any viable tissue from the first biopsy. Dr. T is almost certain that there is a small sample available but if not we will have to prepare for that too. Luckily (or unluckily? who knows) radiation isn't an option. Last time it swelled Josh's brain so much and he was having so many seizures that it probably did more damage than good.

Not only does this mess up our immediate plans to go home and chill until results comes in, it literally screws EVERYTHING up. Josh was in his "final stages" (I say "final" because honestly we have no idea where he was in it) of his med board. Being the fact that they won't release someone without fully treating them, it means his med board has be stopped and he will have to resubmit everything all over again once he is stable again. At first I was bitter about it, but now I have realized that there is a reason we are still here. We are getting the best medical care and Dr. T isn't to proud to say that if he doesn't know, he will find someone who does. So, the connection at John Hopkins is linking us with one of the top doctors in this field. That is something we won't get in Florida and quite honestly would have been a reason for us to come back up if we were down there. We have his appointment on November 9th. It's a second opinion as well as a consultation. They are also going to see if he qualifies for the drug trial.

I am a firm believer that there is a reason for everything. Right now, I haven't figured out what that reason is. I have no idea why life keeps serving us shit sandwiches and it's something I may never know. But what I do know is that I am thankful we caught it quick (we were actually going to blow off this MRI and just get it done once we were down in Florida) and I am thankful that there are options. Right now, Josh and I are still processing everything. Regardless of what treatment we choose, we will be staying up here way longer than what we intended. Does it suck ? Terribly. But we, like always, try to make the best of the situation. That's all we can do.

At this moment, today, we are still processing it. We have basically locked ourselves in our apartment and aside from appointments and our support group we have limited our interactions with the outside world. If you message either one of us, I can't guarantee we will respond as it is still a fresh wound and we are trying to manage it. I ask for support and understanding in this time and I urge you all to please not message him asking questions about this. He always welcomes messages of encouragement and support but right now it is something we still know nothing about. In due time, when more information comes about I will keep all in the loop.
However, we do ask all of you to continue to pray for Josh and our family. My husband is a fighter and he's stubborn as hell so I know he won't go down without a fight. This a speed bump in the road and just like last time, I know he will kick ass.

Monday, September 19, 2016

Rockstar for a Day

I figure I should start this post out with two PSA's to everyone. First off, I would like to clarify one thing. Josh is considered terminal. I know, it's hard to hear, and because of that it is a subject that we tend to shy away from. From the get go we have always said he is just inoperable, often to just soften the blow. Most people don't know how to react when they hear the word terminal. It has even taken us months and months to be able to say it and we still hate it. We prefer inoperable; it's easier to say and it's straight to the point. The truth is his tumor will never be operated on and it will never be removed. The word inoperable doesn't carry the weight terminal does. I strongly apologize to those who have just found this out. We were not trying to keep it a secret, it was just our way of working through the emotions attached to that awful word. Second PSA is a piggy back to the first one. As many of you know, Josh was granted his dream day wish yesterday. This however, has nothing (and I truly mean, nothing) to do with his current health situation. Josh is as healthy as he can be with cancer. So just because his wish day was granted, doesn't mean things are bad. I consider this blog a viable way to connect with family on a personal level, so yes, if things were bad, I would have written about it. Now that that is out of the way, I'll tell you about the day my husband was truly treated like a rockstar. 

If Hollywood has taught us anything, it's that when people get diagnosed with a terminal illness, they want to go and do the most extreme and craziest things. I was actually watching Last Holiday a few weeks back. If you haven't seen it, Queen Latifah's character is diagnosed with a terminal illness. After she realizes she hasn't done anything spectacular with her life, she withdraws her life savings and flies off to Europe where she goes on amazing adventures and experiences new things. Now, Josh and I are no where near financially set to just blow money on a lavish adventure as the money would run out quick but, I get it. Money is just money. One way or another it will replenish itself. After watching this movie, I have been racking my brain thinking of something amazing to do for Josh. My husband can be broken down to the core with a few interest; music, fish, hockey, and video games. I will never in a million years see him jump out of a air plane and go skydiving or bungee jump off of a bridge over open water. I did my research and I came up with incredibly expensive trips to remote islands where he can spend his days snorkeling and fishing. I came up with great trips we can take around the states and even overseas. All of them were good ideas and they are definitely things that we will do, but I wanted to give him the once in a life time experience. One of those days where he is completely in awe the entire day and one where he was treated like the badass he is.

I have a confession, I always enter Josh into things. I usually keep it from him only because I never want to get his hopes up. Over the past year or so, I have entered him into winning concert tickets, trips to Hawaii, and countless other sweepstakes. Now, this most recent thing I entered him into is no sweepstakes. It isn't a contest in any sense of the word. I was scrolling through my facebook one day and saw a post from Avenged Sevenfold. I was actually hoping it was a tour schedule that had dates closer to us as we were looking at seeing them sometime at the end of the year in a odd state...I think Tennessee..all I remember is we would have to travel a little bit. Anyway, I actually read the post and the first sentence or so it said something about patients with terminal illnesses. Immediately I knew I had to put Josh's name into the mix. It was for a foundation called Living the Dream foundation that connects terminally ill patients with musicians and allows them to live like a rockstar for the day. I got the email address and wrote them a pretty lengthy email explaining Josh's medical issues. I was set on not telling him as I had to include three bands that Josh would love to meet. I didn't want to get his hopes up by promising something I couldn't fulfil. When I was proofreading the email, I felt as if I had to make sure he was okay with me telling a complete stranger his medical history. Unfortunately I wasn't able to keep this one a secret from him but at the time I really thought we would just get lost in the foundations email, never to be seen. A couple days after submitting the paperwork, we went to see Josh's cousin, Josh and his band DVWNS perform in Pennsylvania. As we were waiting for them to set up, I received the email saying the foundation was requesting more information! They wanted to know more about his story, to be able to contact his doctors and to finalize what bands he wanted to meet! We were SO excited! After re-submitting the paperwork, we waited a few days. I'm not exaggerating that, it was such a quick process! On September 8th, I was sitting in the hallway waiting to go into my doctors appointment. I usually turn my phone onto vibrate before going in and when I went to do that I noticed I was getting a phone call from California. Thinking it was a telemarketer, I was slightly annoyed and answered it hoping to get them off of the phone before my doctor walked in. When I answered it, the lady introduced herself as working with the Living the Dream foundation and then she told me that they would be honored to have Josh and I be their VIP guest at the Rock of Allegiance festival! She explained that we would be able to go backstage, to meet Avenged Sevenfold and to see them perform. We had no words and honestly had no idea still what was in store for us.

The next week and a half went by incredibly slow. It reminded me of our deployment days when I anxiously counted down to him coming home. We were nervous. We were anxious. We were so excited we couldn't contain it. When Saturday came around, we had the jitters even driving to the hotel. That night I got probably a total of three hours of sleep. My anxiety was through the roof. My lovely husband though was snoozing away, having no trouble sleeping. We learned from Warped Tour that Josh can't do a full day of a music festival. His stamina is still not where it should be and he gets tired quickly. I wanted to make sure that he had the best day so we decided to head to the festival a few hours after it had started. We were told to meet some people at the ticket booth and they would have our tickets. We met up with Kacie who was our escort for the day and we met Scott who founded the Living the Dream Foundation. The entire day they made sure Josh was doing okay, constantly handing him water and checking in to see if there was anything we needed. Within a few hours we felt like we had known these people our entire lives, which honestly made the day a thousand percent better. The Rock Allegiance festival set up is wayyyy less complicated than Warped Tour. There are three stages, two main ones and one off to the side. They had vendors and food trucks but it was simple and straight to the point, music was the priority. We were escorted backstage where we were able get food and talk with the foundation. Afterwards, I headed to the bathroom and left Josh with the group. While waiting, Josh was introduced to the lead singer Of Mice & Men. He had no idea who he was and he was already fangirling, haha so I was excited for the other meet and greets we were going to do. We then walked over to one of the main stages to see the tail end of a band performing. When they finished, we walked over to the other main stage and watched Sevendust perform, and wow, they put on a great show! After that, we waited between sets and decided we wanted to see Of Mice and Men perform. We figured after meeting the lead singer a few hours prior, we should check them out. We became instant fans. We were able to stand on the side of the stage and watch the entire set! Once they finished, we walked over to the other main stage and stood off on the side of the stage to watch Killswitch Engaged perform, which was awesome! When they finished up, we decided Josh needed a break and we just sat in the stands. We were scheduled to meet Pierce the Veil at 6:00 before they went on. Josh and I were so pumped to meet them as we are both huge fans. We saw them perform at Warped Tour a few years back and were planning on seeing them in concert soon. They were seriously the sweetest most genuine guys. We chat with them a few minutes and then took a bunch of pictures before they prepped to go on stage. Like the previous performances we were able to stand on the stage off to the side. It was a great performance and it was even better being so freakin' close!

After their performance, Josh and I had some time to kill so we walked around and went to the different vendors. We stopped by Fuck Cancers booth and bought some merchandise and we went to the FYE tent and picked up Avenged Sevenfold's vinyl album in hopes we could get them to sign it. We walked back to the VIP area and anxiously waited for our meet time at 8:30. The minutes ticked by so incredibly slow. Finally around 8:20, we walked over to the dressing room area to get ready to meet Avenged. Josh and I were both pacing back and forth and I was trying to calm my anxiety! When they gave us the go ahead to walk in, I pushed Josh in front of me, half because it was his dream and the other half because I was SO nervous! We walked into the room and Zacky Vengeance (guitarist and backing vocals) was sitting on the sofa. I immediately recognized him (I had a HUGE crush on him when we saw them back in 2011 and a girl doesn't forget her first rockstar crush, haha!) Josh sat next to him and we talked about everything. He wanted to know about Josh's diagnosis, how we had met, where we were from, and everything in between. A few minutes into it the rest of the group came in and introduced themselves. We all sat around talking about Josh's time in Iraq/Afghanistan, how their music helped him get through some dark times, how their music inspired him to make it through each day and then they started talking about fish and food, Josh's two loves besides me and Archie! We then decided to do some photos together where they let us hold their guitars! We then brought out the merch we wanted them to sign and they gave us a signed set list and a handful of guitar picks. We then said our goodbyes and were escorted back to the stage area to wait for them to come out. We were issued our VIP passes and were told that we had our own special area on the stage that only Josh and I will be standing at. HOLY CRAP!

They came out and did their pre show prep, jumping around and amping each other up. Before they went on stage, every single member gave Josh and I a good luck fist bump. When they took the stage, I got goose bumps! We watched the entire show right next to Synyster Gates (Brian, lead guitar and back vocals) and the entire time they were shooting us funny faces and giving us thumbs up. It was truly amazing to be in between the power of the musicians and the screaming crowd. It really is a different experience! Half way through the show the lead singer Matt, started talking about 9/11 and how we should honor those lost and those fighting for our freedom. He then looked over in our direction and asked for Josh to join him on the stage! I think Josh's heart hit his stomach when that happened! Matt introduced him to the entire stadium (I have no idea how many people were there, but it was a football stadium and the entire floor was full of people) and thanked him for his service. I started balling! My husband was on stage with Avenged freakin' Sevenfold! Josh walked back to me and I think he needed a moment to compose himself, haha. We finished the concert and said our goodbyes to everyone that made this day possible. Josh walked away and said "That was hands down one of the best days of my life...well besides our wedding day, but it's pretty damn close!"

Words cannot express how grateful I am to Scott, Kacie, and the entire Living the Dream foundation. I'll be honest, a month prior I had no idea who they were. I had no clue how much they would impact our lives. I knew that I wasn't able to give my husband a day he deserves, but I am so grateful for fate that lead me to this wonderful foundation. I really can't say it enough how amazing they are. I am also so thankful to Pierce the Veil and Avenged Sevenfold who took time out of their day to make his. The memories we made that day will be used on the bad days to remind us that we are not alone in this fight and will keep pressing on.