All Aboard

I’m going off the rails on a crazy train…..

As you likely already know, Joe, my brother, isn’t doing well. He continues to lose weight, and every time I see him, he looks weaker and weaker.

I don’t think I’ve blogged about my brother. About 8 years ago he had a very large melanoma removed from the side of his head. He went through a partial chemo treatment, and then life happened. He didn’t finish his treatments. For the past couple of years, he’s not felt quite right, and made numerous trips to various doctors, hoping to find one that would run a PET scan and check for cancer. Last year he went to the Brown Cancer Center, supposedly one of the best in the Country, and they assured him if the melanoma had no returned by now, it wasn’t going to return. They sent him on his way, and told him he would be fine. This summer, he continued trying to get a doctor to listen, and actually do some tests to see what’s going on. It wasn’t until he got sick and went to the ER, thinking he had pneumonia, and got a chest X-ray, and a mass was found on his lung. That was a little over 2 months ago. Since then, we’ve learned that the cancer is Melanoma, it’s Stage IV, and it has spread to various bones, including 7 spots on the spine, his lymph nodes, and various other parts of his body.

Last week he went for a scan so he could be marked for radiation. They said it may be up to 2 weeks before he can start radiation. He goes to the cancer doctor this week to see if they’ve determined which chemo will respond best and help slow the progression. Here we are, over 2 months in, and nothing has been done. I see him gradually decline with each passing week. Sure, he has medication to help with the pain, but right now the best pain therapy would be radiation. While we’re all quite aware there’s so cure for Joe, and this can’t be fixed, we would like to see him live out the rest of his life as pain free as possible. So far, it’s not going so well. Why is everything so difficult?

On the other side, I’m still fighting to get Mya evaluated. I ended up scheduling a meeting with the Superintendent of the school system. It wasn’t until that meeting was scheduled that I finally received a call from the lady over the department that handles the evaluations. Why has it taken 6 months, and a meeting with the Super, to get someone to return my call? When I go for my meeting, I will make it very clear to him that there’s a major gap in the system that needs to be addressed.

I’ve been at this since Mya started Kindergarten, and things are not getting any better. Of course, the anxiety medication has made some major improvements in some areas, but there are other areas where we continue to struggle, and those are only getting worse.

While waiting for the school to call me back, I’ve also had her to the doctor, talked in depth about my concerns, and asked for another referral to the Weisskopf Center. I had to call the office again when I hadn’t heard anything from anyone. And then, when I happened to be in the office for blood work, I asked if she could look and see if anything had been done. Apparently it hadn’t. Go out another 2 to 3 weeks, and I’ve still not heard anything, I try my luck contacting the Weisskopf Center direct. It wasn’t until today that I finally learned her referral was received and processed yesterday. I should be receiving the packet that has to be completed and returned. Once they receive the packet, we will go on a waiting list. I asked about the wait time. 6 months. After 6 months of trying, I get to wait another 6 months.

My daughter is hurting herself, and I can’t get her help. My daughter has so many other things going on, but I can’t get anyone to hear me.

Why does a person have to scream from the rooftop to be heard?

Bob is having some issues that we’re trying to address. Tests ran, more to be done today. He goes for a follow up in 3 months. I’m quite shocked his doctor doesn’t want to see him sooner to go over the results in person. No, his doctor lets the nurse call you with the results. But, what if I have questions that the nurse can’t answer? I have to wait another 2 or 3 days to get the answers? Or, do I do the most logical thing and Google it? There’s fuel for the fire.

This is life we’re talking about. Not a broken bone that can be casted, but hard core serious life issues. Why do I feel like it’s not as important to those that can truly help?

So, this has been my mind clutter for the past 6 months. I think I should probably go ahead and make an appointment for that rubber room. With the paperwork, office visits and wait time I would likely face, I’ll be ready for it by the time the red tape has cleared. 

TTFN!