Proton, insurance, and speaking of toilets...

As of tomorrow, I will have 3 weeks of proton therapy in the books with one to go! Overall I feel pretty good most of the time, but I’ve had to severely adjust my sleeping schedule. I try to be finished with the chemo routine and in bed by 8 PM each night so that I can get up before dawn. That’s right, not only will I have male pattern baldness, I’m sleeping like an old person (in bed by 8 and up at 5). It’s so delightful! The first day the appointment was late at night but after that, every appointment has been in the wee hours. Today’s appointment was at 6:30 AM and there’s one next week at 6:00, but they are most frequently at 7 AM. This means that I drag myself out of bed, drink as much coffee as I can, and then go to the proton center where my head is attached to a table so that I lay perfectly still while they shoot a proton beam through my head three separate times from different angles. It’s delightful. I know some people like to be strapped down. I’m just not one of them, so don’t be jealous if you are one of those. It’s not like you think- just trust me on this.

I’m sure this is an even more delightful process for my caregivers, who have to help me get there and then wait for me to be radiated before the sun comes up. My mom was here helping for the first two weeks and Lois has been here for this week and next week. If any of you see either of them, you might give them a shout out for being so amazing. I can’t be an easy person to handle. I never do as I am told, I’m cranky (especially so early in the morning), I have to be driven around and directed around things on my left side, plus sitting in hospitals is boring. It’s a pretty amazing feeling to be loved so much that people would do all of this for me. Personally, I’m finding this round to be a bit easier than the last time I did this. Probably because I know what to expect, I have 4 weeks instead of 6 this time, I have the best caregivers, and the fight with insurance was so much easier than it was last time!

That’s right, insurance paid- even if it was somewhat of a confusing ride. The proton center now has a team of people who work on insurance appeals exclusively. Therefore, when we first paid out of pocket this time, they went ahead and started appealing. We were informed that the first 2 appeals were rejected, which we expected, but then we started getting these conflicting letters from the insurance management company (BlueCross BlueShield of TX)). First, we got a letter saying goods and services were approved. I sent it to the team at proton and they had not seen a letter like that before. Then we got a letter saying that we were under external review (meaning an external reviewer would review the previous decision). The team at proton said that someone would have had to apply for the external review and no one did, so they started digging to find out what the heck was going on. Turns out there was a disconnect between the medical review side and the claims side at BCBS. So, basically, the department making the final decision said it was covered but the claims department had not been notified and was rejecting claims (not paying the provider). When questioned by the proton team, BCBS finally said that the case was closed because it had been approved for payment. When questioned further, they stated twice that they did not know the source of the confusion or even how it was approved so quickly. All that was said was, “This is coming from the top.” And NO ONE knows what that means. The CEO? ERS? The pope? God? Who knows! I’m going to assume that somewhere there’s a file with a description of the fight we had last time and someone just didn’t want to rock the boat. Apparently a previous patient went to the national news about this issue in the last year and BCBS is a bit nervous. I just took the opportunity to explain to the proton team that I like to be exceptional and special- it’s just part of who I am. Don’t we all know that? Defying the odds is what keeps me motivated.

In all, I’d say I’m doing well. I’ve had the occasional stomachache, the chemo induced constipation (as always), and a bit of fatigue. Which, of course, has me back to designing my custom toilets made for sitting and throwing up at the same time.

I’m starting to think about additional components for my toilet idea. So we need a comfortable seat for the business on the bottom end. There also needs to be some kind of attachment on the front that includes a comfortable shelf or holder for resting the head. I’m thinking it will be one of those doughnut rings that you put your face into when you get a massage. So you sit on the toilet, rest your face on the stand in front of you, looking through it. Below will be a container for throwing up that has some kind of disposal mechanism where the vomit can be flushed away. The result is a comfortable place to sit while you are trying to go (or in a case where things could be coming out of both ends, which also happens), a comfortable place to rest your head and perhaps sleep, and an accessible place to vomit, all of which can be disposed of with one flush. Of course all would need to be adjustable for height and comfort, as well as easily sanitized. I heard today that the epicenter of Houston’s innovation/technology corridor is going to be 2 blocks from here, so I need to get my prototype together so that I can pitch this brilliant idea to someone over there.

My last proton therapy session is Friday, April 20. I will get the bang the gong once again, hopefully for the last time! Jason and Lois will be here for the gong bang, signing the wall, and the short celebratory photo session. I do miss my guys back in Lubbock, but I will be headed back there after that last appointment and I get to stay for over 2 weeks before my next scan and checkup. Word from Dr. No Naps is that after my May checkup, I will probably be taking the chemo pill at home in Lubbock monthly and only occasionally traveling to Houston for scans and checkups (past experience says once every 4-8 weeks or some sort of schedule like that).

This combination of treatment (proton and chemo pill) worked very well for me in 2016 and allowed me a lot of time before having to move to some other types of treatment, some of which didn’t work out so well. Therefore, I’m optimistic that this will give me another 2 years of high quality life. As my mom likes to say, “We’ll be happy to take it 2 years at a time.”

At the end of the day I can’t complain, but I often do anyway. For those of you who are interested in learning more about proton therapy, the need for it to be a first line treatment for certain types of cancer, and the struggles that people often have with insurance, I will direct you to this web page, where you can read stories from other patients and learn more about this therapy: http://allianceforprotontherapy.org/take-action/. We can be a voice for those who need health reform in order to preserve their lives as well as for those who never had the opportunity.