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.

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