Thursday, January 11, 2018
Saturday, November 18, 2017
That next Wednesday night, he had his first seizure in I don't know how long. On Thursday he had two more. Per our rule, if he has three seizures within 24hrs, I take him to the ER. My fear was that there was swelling from the wound or he had an infection of some type. I didn't think the seizures were result of the tumor because well, he's on SO many anti-seizure medication. In my eyes, he shouldn't be having seizures if he's on four different types of anti-seizure medication but what do I know. While in the ER, they checked him out and ran some tests. He was feeling a lot better so they sent us home. That weekend he did pretty well. On Monday morning, he woke up at 6am with a headache Being the seasoned chemo veterans that we are, we keep a trash can right next to the bed which was good because he then started throwing up. We thought it was just indigestion. I gave him crackers and went to go make his breakfast. He threw up again. That's not entirely unusual, so I made him sip on some carbonated water, which is usually what I give to make him burp. He threw up again. That's when I started getting nervous. I was terrified he had caught a bug or there was an infection with the brain biopsy. He then started complaining of double vision and piercing headaches. He threw up a total of six times, not even able to keep water down. I decided to take him to the ER (he fought me the entire way, no surprise lol). They checked him in and he was taken back to a room. They ruled that he just had a severe migraine. Can't blame them; 30 year old male in seemingly good health just vomiting, having double vision and a piercing headache..classic migraine symptoms. But while in the ER, he had a seizure. It was a very minor one, a simple check in and out, but a seizure non the less. They decided to keep him over night for observation. That night they gave him a little to much of his medication lamotrigine. Unknown to us, there is actually a serve condition you can get from this medication called Stevens-Johnsons syndrome and since they gave him a higher amount than his body is used to this was a major concern for his neurologist. If you want to, you can look it up, I just suggest to not do it while eating. We met with her the next morning and she felt really bad about the medication mix up. They gave him his normal dose but noticed that his cheeks were becoming really red. She called in a dermatology consultation to make sure it wasn't the syndrome. The dermo came in and said he believed that Josh was just flushed from the steroids. The neurologist decided to adjust some medication so she decided to keep Josh another night. We spent Halloween in the hospital, but it was okay and we made the best of it. (thanks Mom and Dawn for the candy!) That day I was able to get into contact with his oncologist at the VA and she scheduled us an appointment that Thursday to go over the pathology reports and to talk treatment.
While in the hospital, the neurologist had read the MRI and had let it slip that she thought Josh now has stage IV Glioblastoma or GBM for short. Now, here we are sitting in the room with his oncologist and she was bracing us for what she was going to tell us. She said the words Glioblastoma and let the word hang in the air. Josh and I looked at each other, and then to her, and said "yeah we know." She was shocked and a little annoyed that we had already been told. I told her this is just the way we find out bad news; it's usually from someone who has no right to tell us said bad news. Remember when we found out he was diagnosed with brain cancer from a radiologist and not his neuro oncologist? Yeah, fun times. So she told us what this tumor means and what treatment means. Remember last blog post when I said they will be doing the pediatric treatment? Yeah, that's not an option anymore. Instead they want him to do another round of a different type of chemotherapy called Bevacizumab or more commonly known as Avastin. From the research I have done, this seems like a pretty chill chemotherapy. It will be a 90 minute IV once a month but if tolerated they can knock it down to 30 minutes. Along with the chemotherapy, he will also be doing a treatment called Novacure. I'll leave the link here if anyone is interested in learning more about the device. Basically he wears this 18 or more hours a day. It's main target is breaking up new cell growth. It's a constant therapy and he will be doing it until they notice it not working or his body can't handle it anymore. Aside from minor skin irritation, the device itself doesn't really offer up many side effects. He will have his head shaved and will need to shave it every four days. His nodes are placed in a particular spot and we will be trained in how to do that. It comes with a battery weighing no more than 3lbs so even on his worst day, Josh can still carry it. It has four lines that connects to the battery so it's not a ton of wires. He is allowed to remove it for hot dates with me or for special occasions when he doesn't want to gain attention, he just has to make up the time he had it off. He is supposed to sleep with it (we will see how that goes, fingers crossed it goes well, the boy loves his sleep!) and he can either take it off to shower or detach the lines and place all of the equipment under a shower cap.
Josh is okay with the chemotherapy. We know chemotherapy, as sad as that sounds. He's used to the routine. He's used to the side effects. But this Novacure is something completely different for him. He's not to thrilled about having to have his head shaved and having to wear this as much as he has to. I'm nervous for him, I have no idea what to expect. I'm also a little skeptical about the whole therapy treatment. To me, it sounds a little hokey. We will have to just wait and see. He will be having another MRI in January to see if anything is working so keep fingers crossed we have some good news. Aside from all of the new symptoms he's experiencing, he's doing pretty well. The Halloween hospital stay introduced us to at home physical therapy and a in home health care nurse. Both come twice a week. The physical therapy is to help with his walking as he has become quite wobbly. We don't know if its the effects of the prior chemotherapy or if it's the tumor doing the dirty work. Lately he's being using the walker through out the house and isn't allowed to be left alone at all because of the risk of falling. He's fell a few times and the first time I called 911 and had the fire department come out and help me get him back up. Since meeting with the physical therapist though, he has learned how to get himself back up. Physical therapy is going good though and he really like his therapist. We also filed for and received a handicap permit. That was something I NEVER thought I would have had to do at 28 for my 30 year old husband, but we did it and I am SO glad we did. It's made life a little easier.
Ups and downs are par for the course. We knew this going in that it wouldn't be easy. We have had our rough times but we always try to find the humor in everything. We try to be there for one another and I am trying really hard to be understanding of our new normal. It's hard seeing my bright, loving life husband slowly deteriorate. But there are moments when I see the boy I fell in love with all those years ago and those are the moments that are forever imprinted in my mind. It's the smile and the laugh that keeps me going just as much as it's me that keeps him going.
Monday, October 2, 2017
I never cry in front of Josh. Scratch that, I try really really REALLY hard to never cry in front of him. If something upsets me or he says something a little hasty, I usually go into our bathroom or closet and cry it out. I don't know why I do this but it's something I have developed over the past few years. I tend to believe that it's because I don't want to seem weak. I'm supposed to take care of him. He's supposed to rely on me when shit hits the fan. But instead, in this instance, it was him holding me. His mind was racing, probably faster than mine, and yet, he was the strong one. I was ashamed and silently scolded myself over and over the entire drive to Orlando. I am well aware that I am entirely to hard on myself. I get that. But in my situation, I have to be.
Now, what's the treatment option? Well, since we don't know what the growth is, they want to determine it with the biopsy first. If it's a continuation of his already disease, then we can start a new treatment. If not? Well, we'll cross that bridge when we get there. The new treatment however, would be a pediatric one. They have seen success rates in children with this disease at 70%. That doesn't mean remission, that means stabilization which is what he has been fighting for the past 3 years. It will be a completely different regiment. This one will require us to go to Lake Nona three days straight every month. He will be getting chemo through his port. We haven't made plans yet, but I'm almost certain we will just be staying in Orlando for those three days.
This news took us by surprised and we have taken a few days to sort it all out. When we got home from Orlando, we crawled under a rock destine to shut the world out. We cried and held each other. We were emotional eaters; silently celebrating the fact that we don't have the strict procarbazine diet anymore. We binged watched a few Netflix shows. We were just together. One on one with each other, trying to digest everything we were just given. Luckily my mom threw herself into action and came over to help me clean, cook, and even went grocery shopping. I really hit the lottery with my parents, they are always there when I'm not at my best. We knew this would be coming but we didn't expect it this way. On the plus side, Josh was able to complete 4 rounds, or six months, of chemotherapy. While it's a defeat, we always try to look for the silver lining. He still has options.
Sunday, August 13, 2017
“Success is not final, failure is not fatal: it is the courage to continue that counts.” - Winston Churchill
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.
*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.
Friday, July 21, 2017
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 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
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.