I have some bad news, I have some good news, then some more bad news, followed by more bad news. Let me explain.
The insurance company paid for all of the preliminary testing and consultations at Northwestern, this past Monday and Tuesday. Things were looking good.
Then, the Medical Director at the insurance company decided to, unilaterally, deny the treatment at Northwestern, saying that there is no evidence that proton therapy is any better than gamma ray radiation therapy. He is sticking to his guns on that, even after two appeals. So, that's the first bad news.
The good news is actually amazingly great news. Northwestern Chicago Proton Center has reviewed my case, and decided to wave all costs for my treatment! Proton Beam Radiation Therapy has been around for years, but is still seen as experimental by insurance companies. They feel that my case, being as rare and unique as it is, is the perfect example of what proton beam is designed to do. With all of the imaging from my CT Simulation, they will simulate two models - one using gamma ray, and the other using proton beam. I will be a case study for the future of the program. And yes, it will be in writing as a legal contract.
The objective is "cure". They assured me that (1) cure is within their reasonable expectations, and (2) they will pour into it every resource they have to ensure a cure, because it is just as important to them as it is to me. That is just amazing. Thank you all for your prayers - that's a God thing.
OK, now for the second bad news. At the risk of repeating myself, remember me saying that Medical Oncology is completely separate from Radiation Oncology. Medical Oncology handles the chemo portion of the treatment. When Medical found out that Radiation got a waver, they went to the board and asked for a waver as well. The board said, "The reason we gave radiation the waver is because the insurance company wouldn't pay for the treatment because it is not available in their network. The insurance company will pay for chemo because it is available in their network. So, no, you don't get a waver. Tell the patient to get chemo in Wisconsin, and radiation here." Medical Oncology is still going to bat for me, and they said that the board is willing to hear good reasons for why they would make an exception. There is also a possibility of grant money to pay for it. So, it's not a done deal yet.
Logistically, it would be almost physically impossible to get chemo in Wisconsin, and radiation in Illinois. The closest hospital in the network is still four and a half hours away. If it could be scheduled perfectly, maybe it could work, but that would mean a lot of driving for me with the physical effects of chemo in my veins.
We'll keep working on that.
The third bad news. Part of the reason for writing this blog is to keep everyone informed as to what is going on. I know that there are a lot of you that worry for me, and I appreciate that, but the truth is that I have cancer. Not only do I have cancer, but I have a rare, fast growing cancer. And, again, not only that, but it is tracking along my cranial nerves. I can tell you exactly where it is by the symptoms that I am experiencing. It's bad, and it's getting worse. I don't see the point in telling the story if I don't tell the whole story.
My latest symptom is that my left eye is no longer tracking with my right eye. In other words, I go cross eyed when I try to look with both eyes. Dr. Akthar is reviewing the latest MRI to see if he can find for sure what is causing it, but we can pretty much assume that the tumor has now reached my sixth cranial nerve that controls the muscles of the eye. It's kinda crazy since I have 20/20 vision in both eyes. I see perfectly, just not with both eyes at the same time. It's not all that debilitating. There are plenty of people out there that only have one eye, but it does take some getting used to. As a word of warning for all my Northwoods friends, if you see me in my truck, I am driving with one eye closed! Steer clear!
I was born with a pretty bad astigmatism in my right eye. It measured 20/400 on an eye chart, so I always relied on my left eye to see. That made me left eye dominant, even though I am right handed. Through the magic of Lasik Eye Surgery, my vision was corrected to 20/20 in both eyes. But still, my left eye remained dominant. This makes it particularly challenging when trap shooting, since your dominant eye should be looking down the barrel, and you should have both eyes open to see a wider range.
I can drive perfectly fine seeing with my left eye, while my right eye is closed. Honestly, it's like it's always been. But wow, trying to drive with my left eye closed is down right scary. I don't know what I would do if I lost my left eye. So, please pray for that.
My medical oncology team up here is trying to put together a plan B scenario, just in case we have to do chemo in the Marshfield network. That would not be ideal, so let's pray that some grant money comes through. That's my best hope.
Radiation hasn't set a start date yet, but last word was that they were hoping for March 8th. The chemo side will have to be straightened out before it can begin.
I want to thank Craig & Theresa for their generosity in allowing me to stay at there house for the first couple of weeks. That is a huge blessing. Tony & Cindy have offered for me to stay with them, after that. The plan is coming together.
I'll keep you posted as new things develop.
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