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.
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.
