Monday, April 30, 2012

Ranting and Raving...

Well, I have been meaning to write a new post for a couple of weeks now, and I haven't because I have been overcome with such feelings of sadness that its very difficult for me to write something uplifting. (Which is the purpose of this blog. I have a very private paper journal for the sad feelings. Its therapeutic to get those out of my head too.)

Brian's 30th birthday was on April 16th! It was a very low key day as per his request. I had started to formulate a plan for a surprise party of sorts, but then I quickly realized, after hinting around the idea that it was definitely not a good idea for him. Brian is not the surprise party type. I am! I told him when I turn thirty there had better be a great surprise party to rival all other surprise parties! To which he replied, "well it isn't really going to be a surprise then is it?" which as everyone knows is not the point ;)  Anyway, we had a nice day that day. We went out to dinner at Johnny's which is our favorite Italian place in town, and then came home and ate cake that my mom brought us. My parents got a smoker for Brian, and to my surprise, he was so excited that he didn't even have that "gift-receivers remorse" he is so apt to experience. I could almost see his mind  immediately fill with visions of smoked meats dancing in his head.

On Wednesday, I took Brian to the airport to fly out to Utah for Matt's graduation. I had a bad feeling, but I figured it was just because that would be the first time we were away from each other since the surgery, and so far away. The doctors were confident that he was fine to travel and even took him off of his seizure medicine two months early so he decided to go. Thankfully, he met up with his mom and dad and they shared a hotel room because lo and behold, in the middle of the night on Friday he had another seizure. I got a call at about 3AM from Greg letting me know that aside from biting his mouth really bad again, he was okay and at the ER and they would call me with details. I can't express the feelings of utter despair and hopelessness that descended upon me in that moment. Luckily, my sister was spending the weekend with me and she was there  because I was literally trembling. I called my parents and they drove all the way to Bartonville just to be with me. I was under the impression that he wouldn't have any more seizures because the neuro NP assured us that the only reason he had the first one was because of the tumor. All sorts of thoughts were running through my head, did he have another tumor that they missed? Is he ok? Is he afraid? What if he needs another surgery? I even started looking at plane tickets to get myself out there.

Kim called next because they needed some info about his meds, and then later I got one more call to let me know the preliminary CT report looked clear, and I got to talk with Brian for a minute. This time, when he woke up he was extra confused because he wasn't home. He said he just let the paramedics do what they needed to do, but he was very out of it. He didn't know why his mom was there, he couldn't remember Matt's graduation, and he had no idea he was even in Utah. But at least he didn't think he was 18 this time :)  The doctor heard his history and decided it was best that he go ahead and fly home on Sunday as planned and check in with his doctors at home. So Sunday, Alissa and I picked him up. I had a Creamy Lime Pie waiting for him so he had a slice of that and then we went to dinner at Grandma and Grandpa Branch's. After that, Brian went to sleep and slept until about 9:30, and then got up, but then went back to bed with me at about 10:00 and slept all night. He was just exhausted.

I called on Saturday and talked to the emergency line at the INI clinic and the lady was exceedingly rude and told me that the line was for emergencies only and I would have to call back Monday morning. I guess I am a little unclear on what constitutes an emergency to these people. I thought they would want to know that their patient that they took off of seizure medicine two months too soon and who had another seizure in a different state, that they released to travel, two months after major brain surgery and a brain cancer diagnosis, was an emergency, but evidently, it is not.

Monday morning Brian called the nurse practitioner, and she called me back at about 11:30 in the morning and said we were too fast. She was going to call us that day because they had already heard what had happened. Anyway, she said it was her mistake taking him off that medicine. She usually leaves patients on it for at least three months, but because Brian is so young, she thought he would be okay. I asked her what the harm would have been in leaving him on it for the three months. There aren't any side effects or contraindications with his other meds, and then she got defensive and told me that she takes responsibility for this, "but then again she takes responsibility for things that aren't her fault all the time."  WHAT? EXCUSE ME? I couldn't believe she got so arrogant with me. This seizure WAS her fault and she needed to take responsibility and shut up as far as I am concerned. I am done being nice with these people. I feel like they are so disorganized and its very frustrating because this is my sweet husband and whether we talk about it or not this is a life or death situation.

We met with the oncologist on Thursday and he said Brian's blood counts look great which is good, but he is supposed to start his second round of chemo TODAY, and as of last Thursday they hadn't even called it in yet. I really don't think it is my responsibility to call his doctors office two weeks before he needs his chemo (because that is how long we were told it takes to get it) and make sure they call it in, but it looks like going forward I will be taking that on too. I am just so upset about this. They need to get organized. Its a nightmare. I want to get a second opinion, but Brian wants to wait until July when the oncologist specializing in primary brain tumors gets back from his fellowship at Duke University. I don't care if we have to go to Mayo or someplace else, but if things don't improve we are going somewhere. This laissez-faire attitude is not working for me.

That is it for this update. I am working on ways I can monitor my stress level and mood so that I don't get consumed with this chronic stress and worry. For now, here is a great quote from Pres. Uchtdorf that a sweet fellow blogger posted last week. It really helped me to realize that even in the midst of despair and worry, we are never forgotten. Check out her very uplifting blog here!