Life doesn't give us purpose / we give life purpose

Many many things have happened since the last blog post. One major thing is the brain biopsy. Josh went in on Oct 18th for the biopsy. It was a fairly quick procedure. I honestly think we sat in pre-op longer than he was actually in surgery. Before I was able to see him in post op, his neuro surgeon came and got me. We sat in a very small room and talked about what he saw. He said the tumor was wrapped around the part of the brain that processes speech. It's not necessarily the part where Josh speaks, but more of where he comprehends speech. It was definitely an "ah ha" moment for me. Anyone who spends a little bit of time with him would notice this. You can tell him "okay, do you want peanut butter and jelly or a ham sandwich for lunch" and he will say "lunch." Sometimes I laugh (to keep from crying) and try to help him but sometimes I just make the choice for him if it's really that difficult to make. The neuro surgeon didn't want to over step boundaries as far as what type of tumor he thought it was or even as to what stage it is in. He advised me to make an appointment with the neuro oncologist as soon as possible. He gave us the option to either stay 6hrs post op and then go home or to spend the night and go home the next day. Because we were in Orlando and we live in Palm Bay, I decided to have him stay over night. I would have hated to drive all the way home and witness Josh have a complication of some sort. Last biopsy they actually didn't give us a choice and he spent the first night in the ICU to be monitored. They sent us home the next day and recovery from the biospy began. He didn't have stitches or staples, the wound was just glued and there really wasn't much wound care to do. He did fantastic at home and the only limitation he had was not being able to sleep on that side.

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.