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.