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.

They see me rollin' / they hatin'

For those who don't know, Josh currently owns two wheelchairs and a walker. He has a favorite of the two wheelchairs as one is way better than the other. In any given time there is usually a wheelchair or the walker in the trunk of our car. Usually it's the wheelchair when we are doing exhausting activities (i.e aquariums, zoos, and long shopping trips) and we use the walker when he's just running errands with me, going to appointments or just wants the general extra support. He is in no way completely reliant on these devices but they help in more ways than just one. Shopping trips for groceries or normal day to day stuff is usually done by using a motorized cart at the store. My husband has used these devices for many, many months. Weather permitting, he often used his wheelchair up in Maryland. Have any of you pushed a grown ass man up a hill in a wheelchair IN snow? I have and let me say, it was by far one of worst thing I have done.

But I have digressed. So yes, my husband has had his fair share of time spent in a wheelchair or walker. Even after months and MONTHS of doing this, Josh is still self conscious about it. (Sorry honey, I'm putting you on blast lol) It primarily depends on the store (Target, Publix, even Walmart) whether or not he gets the stares. He might get the glances and the questioning looks, but not to many people stare. If we are at the VA, he's in company of wheelchair riders as many of those people there are over 50 years of age. I don't tend to notice the glances or the side ways looks as I tend to pay more attention to Josh. In my mind it's just a freakin' wheelchair for crying out loud. Who hasn't seen someone in one?! Often times you would think Josh is a mythical unicorn or something based on the looks we get. Yes, we might be exaggerating a little and being a tad bit dramatic but it's like walking into a room after you know people had just been talking about you. We notice it and we know people are stareing. It almost gets to the point where Josh hates using it in public even though he knows he depends on it. Though no one flat out is rude about him being in one, we do get the annoyed glances when he takes up the whole aisle. We do get the annoyed sighs when he is taking to long time going down a crowded aisle. I often have to go ahead of him to clear the end of the aisle so he doesn't hit anyone not paying attention around the corner. I have had to leave him at one side of the store because he couldn't get down the aisle due to to many people or the fact that the isle wasn't designed for him. So you get it.

*Sushi has nothing to do with this story, it's just a cute picture of my husband haha!*

Yesterday we went to the commissary. Money isnt' tight but I was looking to get a deal on things I rarely buy but needed. Its usually just Josh and I doing these commissary trips but yesterday my dad said he would push Josh so my mom and I could shop. I greatly accepted his offer because shopping isn't fun and shopping with a wheelchair is even worse. My dad pushed Josh in his personal wheelchair while my mom and I filled up our cart. The commissary was pretty busy considering it was a Saturday but everyone walked around Josh and we really didn't have to many issues. When we were ready to check out we decided to use the handicapped lane as Josh was in a wheelchair and we thought it would go faster than a normal one. When we pulled up, we noticed that the people in front of us had two carts full of groceries. Normally, this doesn't bother me. I usually bring out my phone and enjoy the few minutes I have to wait. I am never THAT person that complains in lines, it's really not that big of a deal. However, this particular lane was designed for handicapped patrons. It had multiple signs saying who was allowed in this lane, which you guessed it, had to be handicapped. This included those in wheelchairs or motorized scooters. Now I get it. I am well aware that they could have had someone with them who was handicapped but I honestly didn't even look for that. I also get that the cashier was probably allowing them to go in her lane because it was busy and she didn't have anyone waiting on her. Again, didn't really care. The cashiers changed when we started putting our stuff on the belt. While the lady rang up our groceries, I walked over to Josh to get the tip for the baggers.

When I got back, I noticed that my mom had tried to pay for our groceries. There is always that chances that you get someone who doesn't care and allows anyone to pay as it has happened to us a few times. Those chances are few and far in between but they do happen. The lady refused my mom to pay. Cool, I get it. I walked over to Josh to get my wallet out of my purse he was holding. I walked back over to the register, ready to pay. The cashier told me that I was not allowed to swipe my card as I was not the ID card holder. I told her I understood, that it was my husband but since he's in the wheelchair I was going to pay. She refused to let me pay and kept saying that Josh had to pay. I told her that there were to many people standing where we were and it would be hard to have him get all the way back over here to swipe his card. She told me to have him get up out of the wheelchair and to have him walk over to swipe it. I think my exact words were "Uh WHAT?!" I told her he wasn't in the position to get up as he was on chemotherapy and it's wrecking his body. He's wobbly when he walks and he gets exhausted just walking to the bathroom. I wasn't even arguing with her. I was just more confused as to why she was asking him to get up and walk over to swipe his card. She kept asking me where my ID was and I flat out told her I don't have one and it's none of her business as to why. (Getting an ID is number 2034039 on my list to do. It's so low that I really forgot about it for so long. Josh's treatment and health is my number one priority, not a piece of plastic that allows me to shop there) After going back and fourth she allowed me (yes, very condescendingly I might add) to pay only after the lecture she gave me on policy AND loudly asked the assistant manager if I was allowed to pay. I paid and then walked away completely frustrated.

Like many military families, we have used our fair share of commissaries. I know their policies and I am well aware of why they are implemented. My whole complaint is based solely on the fact of the people in front of us. Again, I don't remember seeing anyone in wheelchair in their party but I'm fairly certain that they were just using the lane because it was open. If that rule could be bent, why couldn't the one regarding us paying. I get that the ID holder has to pay. I understand that, but I had his card with his name on it. He was present and gave me the authorization to use it. I could see if he left and went to the car or something but he was visible to her. My chief complaint though is that she actually told me to have him "walk over here" and swipe his card. Granted, she might have not meant it in a literal sense, more of a figurative sense, but still. I am well aware he is not wheelchair bound and if we really wantd to get him to walk over he could have but he gets exhausted walking to the bathroom. We are not ones to as for sympathy. I'm not writing this to cause a stink or to act like we are entitled to anything. I hate getting hand outs and we never expect anything to be given to us just because he was in the military. Or just because he has cancer. Or just because he's in a wheelchair he doesn't need but relies on. I'm not writing this for anyone to feel sorry for us. I didn't make a formal complaint at the store but the more I thought about it, the more I decided that I had to say something. I wrote in a comment card to the commissary, something I NEVER thought I would ever do. I'm not expecting anything out of it and it will probably fall on deaf ears but I felt as if it was my right to stick up for Josh. As many of the patrons at the store are retired military and a vast majority of them are 60 and up, I couldn't imagine if something like this was said to one of them. Or to someone, god forbid, that had no legs and was asked to "stand up to swipe their card." More than anything, she probably looked at Josh and just assumed there was really nothing wrong with him. She probably assumed he had a bum ankle or wasn't able to walk due to a minor condition or that he was just being lazy. I can't hold it against her, as he doesn't need a big ass sign saying whats wrong with him to be able to be a wheelchair. But he also doesn't need people assuming there is nothing wrong with him based on the fact that he doesn't look like anything is.




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.