Jay Lake (jaylake) wrote,
Jay Lake

[cancer] Field notes from Cancerland, in a deep and dark December

Health metrics

I am tracking an increasing number of health metrics. I now measure my blood pressure every morning along with my weight, and just lately have begun tracking blood sugar as well. The blood pressure measurement is a function of monitoring medication side effects. The blood sugar tracking is because some of the studies I am interested in require a certain range, generally focused on me not being diabetic.

As it happens, I was diagnosed a few years ago as pre-diabetic. Given my current life expectancy, the issue of my potential diabetes has slipped quite low on our list of medical priorities. However, keeping my glucose both low and steady has a number of benefits besides keeping me in range for certain studies. The downside of this, of course, is some of the things I love most to eat (pizza, anyone?) are not conducive to managing blood sugar.

Lisa Costello follows a long term diet protocol focused on nominal-to-no intake of simple sugars and simple carbs. The easiest thing for me to do is eat off her menu, which would benefit both of us. I will have to be careful about feelings of deprivation, which are always the biggest threat to any diet plan I follow. On the other hand, my entire life is made of creeping deprivation these days. Why should this be any different?

Morning routine

My morning routine continues to evolve. Right now I wake up, cuddle with Lisa a bit, go relieve myself (without eating or drinking anything but a sip or two of tapwater), weigh myself, take my blood pressure, check my blood sugar, exercise for 30 minutes, mediate for 8 minutes (I am about to up that to 10 minutes), make and eat breakfast, then blog. I'm trying to sort out if I should re-order any of this activity. For example, would I be better off meditating before checking my blood pressure and blood sugar? All this takes quite a bit longer than my old, workaday morning routine, and I'm not quite accustomed to that, either. I rarely have morning time pressures any more, except for the occasional early appointment or scheduled phone call, but old habits die hard.

Continuing to pursue clinical trials

I have an intake appointment next week after my return from Omaha (one of two days, which as yet not confirmed) for a trial here in the Portland area outside of my treating hospital. There have been a number of phone calls and emails between me, Dad, two different entities at the National Institutes of Health, and my treating hospital about records transfer. Stuff is happening. What it means, and what happens next continues very unclear.

Visiting friends

Between Lisa's family issues and my medical uncertainties, I've been staving off out-of-town friends who want to visit. Unfortunately for me, those medical uncertainties are probably the status quo for the rest of my short life. So Lisa and I are looking at calendars with an eye toward me scheduling people to see me again, except that any plans I make are subject to sudden change or cancellation. This is very frustrating, but as I said to [info]yourbob, this is also me being a dithering idiot, not a dick.

United Airlines

United Airlines has again turned down our request for a refund of the cancelled flights to the UK. I will post a more detailed commentary on this in the next day or so, but I'm very frustrated and more than a little appalled. What the hell is the point of having a compassionate refund policy for medical emergencies (which they nominally do) if a parent's massive stroke doesn't qualify as a medical emergency? It's not like I'm ever going to have a chance to go back to Europe at this point, so a putative fare credit doesn't do me any good.

Disability insurance

Speaking of frustrated, my disability insurance carrier has just taken $8,400 per year out of my pocket through an entirely legal scam protected by the ERISA statutes and associated case law. While the issue is something I might even prevail upon through appeals and legal action, I do not have the time in my life or resources to fight an organization with hundreds of attorneys on staff. Which is precisely what they count on, of course. Better to squash people like me now than open the door to thousands of similar claims. This is an issue which can ultimately only be addressed by Congress, but as the insurance industry has much better lobbyists and makes much larger campaign contributions than any individuals like me ever will, I'm pretty much screwed. As is everyone else ever in my position.

The worst part is, I can't even fight this out publicly, as my carrier has completely legal unilateral authority to modify or suspend payments to me for any cause they care to establish. (Another ERISA scam.) This means that if I make trouble for them, all they have to do is suspend payments while they commence an audit of my claim and I am flat out of money.

It's a criminally stupid system that absolutely privileges corporate capital and shareholders at the expense of consumers in need, and the game is so rigged that it's impossible for an individual to fight. And this is a set of issues that I, like most Americans, was completely unaware of until I fell into the trap.

Welcome to the marvelous land of disability. Our society's treatment of those in the worst sorts of need is criminally immoral. And I say this as one of the luckiest ones in my situation.

ETA: A couple of things I should have noted.

(1) I already have a very competent disability rights attorney advising me. That's how I know what I do about ERISA and the appeals process. Their advice essentially boils down to, "Sucks to be disabled, doesn't it?"

(2) The actual amount of money being taken from with force of law is rather higher than $8,400. The rest of it is being made up by "offsets" connected to SSDI benefits, etc., which serve no actuarial or financial purpose except to reduce my disability carrier's liability exposure, and come at some significant cost to me in terms of tax consequences and so forth. Frankly, that's legalized theft, too, but it only sets me back a few thousand dollars per year. The $8,400 is the amount of my dead loss due to their interpretation of their right of offset, for which I actually have no offset whatsoever.

Tags: cancer, death, family, food, friends, health, personal, radiantlisa

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