Wednesday, October 22, 2014

Bald is beautiful!

Eight years ago Josh joined the Navy.
I remember after he graduated, he came home to Florida with his freshly shaven head and I told him "wow, you look like a cancer patient!" Flash forward 8 years and the same image was standing in my shower, rubbing his freshly shaven head only this time he actually is a cancer patient.When Josh started radiation all the doctors kept saying "and how do you feel about hair loss" (like he had any choice) and "well you know you're going to lose your hair" (again, like he had a choice). The first two weeks were great, we assumed Josh's hair was just to thick to fall out. Yeah he would experience some thinning and possibly some patches missing but he wouldn't be seeing it come out in clumps (we are naive with somethings, haha) Even up until Monday, his hair was thinning yes, but still present.

This morning we met with the radiologist. He examined Josh and said "Wow, I'm seeing some patches of hair missing on the top of your head." Still in denial, we went about our day. Josh has been wearing beanies, one reason is his scar, the other is that it's freezing here. He kept taking it on and off today, that is when I noticed the blanket of hair on his face. He was sitting in the chair, he rubbed his head and when he removed his hand from his hair, his hand was completely covered. My husband has always been the "rip the band aid off fast" kind of guy. He doesn't like to wallow in pain, he'd rather just have things done and over with. That is why tonight we decided to shave his head. He is well aware that chemo will make it fall out, so why not get used to the baldness now? (see, somethings we're not naive about!) So we sat in our shower and I shaved his head. To quote my dad "God only made so many beautiful heads, the rest he covered with hair." My husband definitely gives off a Lex Luther vibe..or Mr. Clean...or Patrick Stewart? Whatever vibe he gives off, he is still my handsome husband..but with no hair!





Second Week Down!

Second Week, DONE!

Seizures.

I have mentioned before our experiences with seizures. No two are ever the same and what only is a few minutes seems like an eternity for him to come out of them. What many don't know, and what I didn't know until last Wednesday, was that Josh was experiencing them on a daily basis. It was almost like dry heaving, he would get the feeling he was going to throw up so he would go to the bathroom and stand over the toilet expecting to yawn in technicolor. To his disappointment (it happened so frequently that he got to the point of actually wanting to throw up, just to get it over with) it never happened. We were told that he would feel nauseous with the radiation, but this was happening 4-5 times a day and was getting old. Last weekend he developed what I could only describe was "face drooping." The right side of his mouth with twinge up with his right eye, he would ramble on (usually something military related) that would eventually ending with extreme exhaustion. Every time it happened, it seemed to get progressively worse. Last Wednesday we made an appointment to meet with a Neurologist. He told us that Josh was in fact having seizures. They were considered "mini" because it wasn't a full blown one, which is being controlled by Keppra. So he upped his dosage and put him back on steroids (yay). Since then he's had two, but knock on wood, they haven't happened in a few days.


To lift this post to a more happier note, Josh hit his one month mark of not smoking (yay!) AND he made it to his second week of radiation! To quit smoking was something that was suggested. But as always, Josh is stubborn and even though it's ALWAYS suggested, he never quit. The man that always swore that quitting would be "to hard" has actually made it through quite easily. The first week he hated it and was prescribed Nicorette gum (which he hates), it helped. Now he is down to half a piece of gum and today he was actually disgusted by the smell of cigarettes! I am an extremely proud wife, he did something that he doubted for so long that he couldn't do!


To honor his success, we got milk shakes from McDonalds! 

Wednesday, October 15, 2014

Our Story




August. 

Summer time, when our only concern was which beach we were going to that weekend. We lived in Italy, Sicily to be exact. We have lived here for two years, immersing ourselves in the Italian culture and honestly eating way to much pasta.  

The date, the 29th to be exact, is a number that will forever be with me. We had just returned home from a Friday night dinner with some friends. We took the dog on a walk and got ready for bed. Around 11:30 at night I was awoken to my husband jolting straight up out of bed. He looked at me, directly in the eye and then his head started rolling to the side. If anyone knows our relationship you know that Josh likes to kid with me. I thought he was making fun of me for one of the many times I had awoken to saying there were spiders all over me. It was a split second for me to realize that he wasn't kidding and something was seriously wrong. I came to and grabbed him just in time to lay him down for his first seizure. What was only a few minutes, felt like an eternity for him to come to. I called 911, he was rushed to the hospital. After he was deemed okay, we went home. We resumed our life as usual, hanging out with friends, spending time with our dog, normal things. That night I had my first break down. I cried "I don't want to go to sleep, I'm afraid you'll have another seizure." To which my loving husband replied "I don't know if I will or not, but I can't control it..let's go to bed." Great. Around 10:00 pm, I woke up to my husband laying on his stomach as a result of yet, another seizure. Again, he was rushed to the hospital, but this time he wouldn't be returning to our home. He was sent out to an Italian hospital, which for lack of better words was a complete shit hole. He received awful care and was treated in a hospital that I could only say was one that should have been condemned years ago. He spent a week there, literally only waiting on an MRI. He finally received one and they told us that the found a lesion on his brain and they wanted to a biopsy to find out what it was. After witnessing the type of care he had received the past week, I opted not do it there and instead we would fly to the states. 



When we landed in Germany. 

Josh was medically evacuated out of Sicily to Ramstein, Germany on September 5th. I landed in Germany on the 6th. During that time he was just monitored at the hospital awaiting our MAC flight out to Walter Reed Military Medical Center in Bethesda, Maryland. On September 7th we made the 9 hour flight back to the states. We were over joyed with anticipation of being back on US soil. Back to family, friends, and modern medicine! On September 8th my parents arrived, which was a huge weight lifted off of my shoulders. For the past two weeks I have had to handle everything, now I could leave Josh with my dad and allow my mom to take charge and do what mothers do best make decisions and handle situations. 


He shaved his head for the biopsy!



Josh making his debut for the center fold of Brain Surgery Monthly

Doctors were in and out of our room. There was always a constant flood of people. Social workers. Case managers. Nurses. Doctors. Everyone was constantly checking in on us and making sure we were okay. On September 11th, Josh under went a brain biopsy to see what the growth was in his brain. They took twelve tissue samples and left him with a lovely scar on his forehead. We were told that it would take two weeks for pathology reports to come back. My biggest concern? Make sure these two weeks were the best two weeks for him. We went to Washington DC. We went shopping and bought over priced, fancy, cupcakes. We moved into our apartment on base, which we had fun decorating and adding our own touches to make it more like home. 

                   

September 29th. Exactly one month after his first seizure we got the diagnosis. My husband, my 27 year old husband, who has served our country for 8 years, who served in Iraq and Afghanistan, who loves life, who can always crack a joke whenever needed (appropriate timing or not) who is kind to everyone and friends with strangers was diagnosed with stage 2 Gliomatosis Cerebri or in laymen terms, brain cancer. I felt my world come crashing down on me. The room got smaller and smaller, I couldn't focus on anything other than reaching for my husband's hand and holding on for dear life. We have had things thrown at us, as life tends to do. We have survived months apart, three different deployments and countless bumps in the road but, this was no bump. This was a sink hole sucking us in, I was just waiting for it to spit us out. 

That day to me is still a blur. I know we walked back to the apartment and I cried in my fathers arms for a good ten minutes like a child. It was like a dream I couldn't wake up from, I was on complete auto pilot the rest of the day. I went to bed thinking "how did we get here. what plan does God have for us that He would give us such terrible news?" I rolled over and looked at my husband. I wanted nothing more than to take it all away. In that moment he grabbed my hand and I knew that I had no other choice than to buck up and help him through this. This was a test to our marriage and our faith. It was a test that though will be a long and tiring one, will only make us stronger. 

So he has started radiation. He goes Monday through Friday and is only off on federal holidays and the weekend. So far it has done nothing more than just make him tired. 



First week of radiation: DONE!


We have received an out pour of love and support from family and friends. I have created this blog mainly to keep everyone updated on what is going on but also a therapy for myself. I am in a constant state needing to express my thoughts and feelings so this will allow me to do so. Don't worry, not everything will be depressing or medical related. Josh and I have a good sense of humor about this whole thing and we are facing it head on with a good attitude and a bunch of laughs!