Monday morning quarterbacking

Well, it’s been quite day with many phone calls and frustration trying to get information. But here is what we know regarding the hospital situation. My insurance company did not see a cancellation of the contract with the hospital when I called this morning. However, they did caution me that it could come through at any time, or already be in place and they didn’t have notification at their level yet. They advised me it would be wise to get my treatment at another facility where I knew my care would be covered. I called the hospital infusion center again around 1:00 pm, and my nurse there told me people were being denied treatment today cause the computers were showing their insurance was cancelled when she tried to input their info. That was the deciding factor for us. We had already alerted my nurse at Stanford this morning regarding the situation. She was able to get an appointment for me for my chemo at 4:00 pm tomorrow afternoon, so we have a long day ahead of us tomorrow. I’m grateful the drug I get this week doesn’t make me nauseated. It’s about 500 miles round trip and my treatment will only take a few minutes – that is, after they access either my port or a vein. I had blood work this afternoon (which looked really good!), so I won’t need to have that done tomorrow or wait for those results.

The nurse at my local doctor has been on the phone endlessly today, as well, trying to make arrangements for all their patients. There is another hospital in town that will take over, but there are people like me who are on special protocol treatments from larger medical facilities using specialized drugs. She is hoping that they will agree to carry my drug and treat me there. I just hope the nurses there are familiar with it since they haven’t been using it. She’s not sure she can have this in place for me on Friday, but hopefully before my next treatment cycle begins. So, it is up in the air whether I’ll need to go back to Stanford on Friday to complete this cycle, but we’re prepared to go if it is necessary.

So, regarding my port: They did another fluoroscope, which is like an x-ray, to see what could be done. This is the 3rd doctor I’ve seen now regarding my port – the first one put it in and then two others who have tried to see why it won’t work. Here is what we learned today – the tubing is long and loose and is moving around. When I lied down during the procedure today, he was able to manipulate it so he could access it. He said he couldn’t guarantee that it wouldn’t happen again; just the difference of sitting up or lieing down could cause it to move when it is loose like that. It just the way my body is made. He said to be sure to tell them at Stanford that I probably need to be lieing down when they try to access it. The nurse at my local doctor told me this afternoon that they’ve seen all kinds of weird problems with ports over the years. It did make me feel better that I’m not alone, but it also makes me realize why they were hesitant about whether the port would help or not. I’m sure it has been a tremendous help in many cases, but so far, not in my case!

Thanks for your prayers today! Please pray for us this week with all the added travel for my treatments. Steve & I both feel like we’re trying to catch a cold and we really need to stay healthy so my treatments don’t have to be delayed.