[cancer] Following up on recent events, and more on costs

After a good night’s sleep for the first time in a week, I am happy to report that I saw my oncologist yesterday about the recent GI issues. As the day had gone by, my lower GI violence was abated in favor of a sullen ache, so we weren’t doing intervention so much as discussion. They did pull a full set of labs on me, and everything was, in her word’s, excellent. She commented on how healthy I was, beyond the obvious.

Among other things, this indicates that I was not suffering from a GI infection these past days.

I explained how things had gone since last Thursday night, and how desperate I was to have better control if they recurred. We discussed FOLFIRI, my recent diet, and medications. The oncologist was of the opinion that the basic problem is just life on FOLFIRI, but that I may have made it worse by consuming a lot of meat last week. (I was craving meat protein horrendously, so an unusually high percentage of my food intake had been meat.) I made a passing comment about loving cured meats and the link between nitrites and colon cancer. She pointed out that horse had left the barn a long time ago and I might as well enjoy bacon in moderation.

In the end, she prescribed a gas reducer, endorsed the use of kaopectate or other OTCs if I wished, and recommended papaya enzymes as a dietary supplement. She also asked me to eat more yogurt, bananas and pineapple, and to keep the meat content of my diet relatively low.

All to the better.

I was also forcibly reminded of the financial costs of this disease. Due to an unusual confluence of appointments, even with my fairly good insurance, my out of pocket costs for visit copays and pharmaceutical copays this week alone is over $200. That of course doesn’t count against my long-since-met annual out of pocket limitations on my insurance plan.

Think about that. I have done everything right. I have the privilege of being white, male and having a short English name. I have an excellent education, quite a good job, good insurance. And yet cancer is costing me as much as $200 per week in direct, hard costs. How would that hit your household budget?

This actually jibes with my overall estimate of cancer costing me about $10,000 per year. Most of that is healthcare direct, hard costs, a lot of which is front-loaded in the out-of-pocket limitations, but it’s also things like higher energy bills for keeping my house warmer than I would if I were not ill, extra transit costs for trips back and forth to medical appointments, and so on.

So who the hell can afford to be this sick? This eats up a significant percentage of my takehome pay. Even as someone relatively affluent who has done everything right by the American rules, cancer is slowly bankrupting me.

My friends in Europe and Australia and New Zealand aren’t forced to take unpaid leave or burn their vacation to be ill, and they aren’t forced to spend every spare dollar and more to meet the costs not covered by insurance. And their healthcare outcomes are as good or better than ours.

Tell me again why we don’t need a better system of healthcare finance?

Tell me again why ours is the best in the world?

This sucks in so many ways.

7 thoughts on “[cancer] Following up on recent events, and more on costs

  1. Michael says:

    I’m sure you know this already, but if you could try eating lentils and beans to see if you are craving protein specifically, or if you are just craving meat. I would suggest lentils over beans just because they don’t normally cause as much gas and you have expressed problems with that of late.
    Hopefully, they aren’t on your list of food aversions.

  2. pelican says:

    Yep. I moved to Canada three years ago. My health is excellent.

    My first few months here, a weight I didn’t realize I’d been carrying gradually lifted … I realized that if (when) something awful happens to my health here, it will not bankrupt me. I will not need to lose everything and bankrupt my family. I will be okay. If I get cancer, I won’t have to bankrupt myself to get treatment. If I get Alzheimer’s, I won’t have to sell my house to pay for decent nursing home care and then get warehoused when my money runs out all too soon. If I become permanently disabled, my income and thus my standard of living will drop certainly, but I will not be facing homelessness. My quality of life won’t be forced to change- I might need to live more simply, but I won’t be consumed with fear about where my next meal will come from, and I won’t have to choose between heat, phone, or medications each month.

    I work in health care. Dealing with the hassles of the US system was the impetus for my move North, because talking to insurers and watching patients go bankrupt was making me hate my job.

    I’m sorry you’re facing these financial pressures, Jay. No one should have to be worrying about money (any more than they’re already worrying about everything else of course) when they’re facing serious illness.

    Thanks as always for your blog. And I hope your GI system settles down for the remaining rounds- I’ll hope for you it was just too much meat, then too much imodium, and that simple and bland will carry you through the next several weeks.

  3. Cora says:

    Our system is not perfect by any means, e.g. we still get out of pocket expenses (though lower than in the US) and pretty much every self-employed person I know is in a battle with their health insurance company over monthly premiums, since health insurance companies believe all self-employed people are either wealthy or liars.

    But it’s still far better than the US system. For example, my neighbour went through chemotherapy at the same time as you had your first round and he did not have to work through chemo, but had paid sick leave.

  4. Hmmm. My wife Hilde has had a chronic disease (degenerative rheumatoid arthritis) since her 20’s, and $10,000 a year out of pocket is what we generally expect to pay for meds, treatments, co-pays, etc. So I find myself a bit nonplussed to suddenly remember that’s not normal for most people.

    I guess like the infamous frog in the pot of boiling water, we’ve gotten slowly used to it. With a lot of luck and an occasional attack of the smarts, we live pretty comfortably and pay all our bills on time.

    But where that $10,000 a year does hurt us is that we’ve never been able to put as much money into retirement savings as we wanted to, or as much as all the financial advisors say we should. So even after retiring from a 30-year career in the Postal Service, I still have to work close to full-time (for a lot less per hour, but with a LOT less stress than working for the Postal Service; my own medical issues and costs dropped significantly after I left USPS) to make ends meet. I’d really, REALLY, like my retirement years to be like, y’know, retirement.

  5. Reesa Brown says:

    Conputer just ate my comment, trying again. Medicaid covers the hospital stays (3 months and counting this year alone), the doctor visits, some in-home health care and bandages and such with no co-pays. they only cover 3 medications per month, one of which by itself is more than our monthly income. But it doesn’t cover the other 6 medications that add up to more than 200$ per month, or the gas money for the multiple monthly appointments, or the live-in helper to take care of the baby and me without whom we would not have a functional family, or any of the other little things that every month keep us riding the edge of the red. I don’t tend to comment on arguments about health care in this country because all I can hear when people start arguing the other side is “you want me dead; you want me to die; you’d rather me 6 feet under than fix this problem.”

    I’m alive because of the mediocre care we DO have for people in this country, and only then because my mother helps me keep track of all the paperwork which is itself essentially a full time job to track, at least for someone brainfogged by pain and drugs and disabled in terms of mobility to get to all the various offices needed to keep the paperwork up to date.

    I’m thankful Medicaid is there for people like me, even as I’m angry at the hoops they create to jump through for people who metaphorically can barely walk, let alone jump. For those who have never been seriously sick who think they can determine what’s best for people like me…like I said, I have a hard time getting past anger from various sources to talk coherently about subjects like that. I’m glad you and others like you keep bringing attention to the subject. Hopefully someone somewhere will bring helpful and meaningful change to the system. And I’ll believe in the “preexisting conditions won’t matter because of the health care reform” when I actually see it put into action. *insert major skeptical look here*

    1. Jay says:

      Like I keep saying, people who oppose HCR are people who’ve never been seriously ill and had to cope with the system. Which, as you point out, places its greatest demands on people least able to meet them.

      I’m glad you do have resources, however strained they may be. :\

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