Tag Archives: cancer

Well, THIS isn’t good.

Haven’t been posting much the last month, because my blood counts were in a slump and I didn’t want to worry relatives who might be reading this. But now that horse is out of the barn door, since a bone marrow biopsy this week showed that, five months or so after my transplant, my cancer has come back. I won’t know until Thursday what the docs at Johns Hopkins are recommending for me.

Obviously, this sucks. It is really not what I wanted, and I was just starting to think that this whole crazy transplant vs. cancer thing might really be working out in my case.

I feel a weird sense of clarity, kind of like what I felt when I got diagnosed with this cancer last year. Partly it’s that I clearly need to focus on short-term goals: eating (I lost a few pounds in the last month of suspense, and keeping my weight up is important), staying connected with people, and being careful to avoid germs, and any risk of hitting my head while my platelets are so low.

Partly, though, it’s because I woke up Friday morning with the following song lyric running through my head:

In the shadows, frightened, we deny you, hiding, locking all our doors
But when you find us, you remind us–
You say, “All I have is yours.”

It is a good song (“Won Our Hearts”), and people should check out the album, by Chris Hoke/Tierra Nueva, on iTunes. Sometimes the recording quality is a little homespun, but that is because Chris is busy working on life-changing Bible studies with imprisoned gang members.

To be honest, at this particular moment I’d rather have more of a Proverbs/Psalms kind of vibe, with God healing my body and giving me long life here on earth and (in my case, adopted) children. And that could still happen–possibly through medicine or, as always, if God wills it. I’m certainly not giving up on either. But this song is what I get right now, so I’m sticking to it.

Raspberries with melted fair-trade bittersweet chocolate on the side.

I’m also taking this time to enjoy fresh raspberries (miraculously still available at the farmer’s market today though I didn’t get there till noon), not to mention showering without any tubes coming out of my body. Because everyone should enjoy those things.

…

HECK yes, you need health insurance

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Two weeks from today you can sign up to buy individual health insurance even if, like me, you’re a cancer survivor who would have had a zero chance of buying an individual policy under the current system. I say: good, because you need health insurance. This. Means. You.

This isn't about your feelings on Obama--it's about your feelings on unforeseen medical emergencies.

This is about *unforeseen medical emergencies*, not Obama.

I think it’s a shame that health-care reform has been labeled Obamacare, because then people project their feelings about Obama onto it. (Personally, I support many of his policies, but I’m strongly opposed to the killer robots.) But I strongly support the U.S. federal mandate–and subsidy–for uninsured individuals to get health insurance, which kicks in January 1 of next year.

I say this because, back when I was 34, it would have seemed reasonable for me to not have health insurance: I have never smoked a cigarette or been overweight in my life, and I have long eaten a diet rich in fruits, veg, and whole grains. Then I got cancer. Twice. No clue how I’d have paid for the chemotherapy or bone marrow transplant if I had not, fortunately, had good insurance at my job. What’s more, it would probably have taken a lot longer for me to get diagnosed in the first place if I’d had to pay out of pocket for primary care, and thus been reluctant to go pay for a doctor visit just based on a slight persistent cough and general run-down feeling.

It’s also true, by the way, that insurance companies have a fiduciary responsibility to their shareholders to try to avoid selling cancer survivors like me health coverage. Fortunately, I love my job and don’t particularly want to be self-employed, but if I wanted to start my own business before 2014 I’d be completely unable to because, as I mentioned already, I’m super aware of how people need health insurance.

I don’t blame health-insurance corporation officials for doing their jobs, but I am sure glad that, starting in 2014, the government is doing its job of requiring companies to sell insurance to people like me with pre-existing conditions. And that only works if everyone is required to have insurance, because that’s how insurance works. (Thanks to Obamacare, children with pre-existing conditions are already able to buy insurance.)

I’m pretty peeved that all of this has become a political football. Please read how health-care reform actually works, and if you don’t have insurance, sign up for it instead of taking some kind of principled stand for your right to freeload off the system if you ever get a serious illness.

Let’s Talk Sky-High Medical Costs (and one thing that doesn’t suck about the Cheesecake Factory)

The New York Times recently had a great piece about how any given medical procedure in the U.S. almost always costs more–often many times more–than the same darn thing in other rich countries. This is probably the biggest reason why U.S. medical spending per person is maybe twice that of other rich countries, with worse health outcomes. I’ve been following this ever since I wrote an article about it, Sky High and Rising, for Sojourners magazine, where I work (normally, I mean–I’m out sick now).

The NYT article is great and you should read it right now (though Dean Baker points out, as he is wont to do, that it ignores the huge effects of medical patents). And I like that the article has space at the bottom for people to add their own responses to several related questions.

But I think most people were way, way off when they responded to the question of how it would affect them if doctors provided upfront price lists for procedures. I am all for transparency, but just having price information without other information could be worse than useless:

-For one thing, it could lead people to decide between doctors or between hospitals based on price without knowing how good the doctor is. You might either wind up choosing the cheapest, or using price as a proxy for quality and choosing a more expensive one, but you’re not making an informed choice.

-To get information about how good a doctor is, you can’t just go with patient satisfaction (which is based more on bedside manner) or even with how many patients get well–you’d have to factor in how sick that doctor’s patients were beforehand. (This is the kind of thing that the new Accountable Care Organizations, which pay for medical results rather than piled-on procedures, are taking a hard look at).

-On top of knowing how good various doctors were, you’d have to know how important a given procedure is, if you didn’t trust your doctor–presumably one goal of knowing the price is for you to decide whether the procedure is worth it for you at all.

-While it is a great idea for there to be some system-wide effort to see whether medical procedures are effective, it is a terrible idea for even well-informed consumers to take calculated risks. I’m a prime example. In 2005, I had a mild cough that wouldn’t go away, and I felt run down. As a healthy, nonsmoking person in my mid-30s who exercised regularly–and who was living on a nonprofit salary–if I’d had no health insurance, I might have deferred going to the doctor much longer than I did. Indeed, it two two or three doctor visits before they took a chest x-ray and determined that I did not have the expected walking pneumonia, but rather an apple-sized tumor next to my lungs. If it had taken me longer to go to the doctor, who knows whether they’d have been able to cure me? Thank God I did have health insurance with a reasonable copay (thanks also to Sojourners and Kaiser Permanente).

-I can personally verify that, if you get a serious illness, you are going to get way more information than you can handle. I am a smart person. I have an Ivy League doctoral degree. But when I get told I have cancer, it’s really hard for me to take in all the information the doctor is telling me about it, even when the doctor is excellent at communicating (and when I haven’t just started to flat-out cry).

So what do I think we should do, if not give everyone way more information than they can handle and then let them suffer the results? I think that the medical system should do the hard work and build up the expertise to develop standards of care, and follow them. I was inspired by this article in The New Yorker about how medicine should have the level of quality control that characterizes the Cheesecake Factory. The comparison is pretty ironic, as the Cheesecake Factory’s stomach-turningly insane portion sizes (a single entree, without drink or dessert, can have more than your whole day’s worth of calories and five times your day’s recommended saturated fat) are just the sort of thing that fuels the U.S. obesity epidemic. But hey, irony is everywhere.

Have Cancer? You Are Now Officially Brave and Noble

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The first time I survived cancer I noticed that a large number of people told me I was brave. As I was actually pathologically anxious, this was a little disconcerting, as it made me feel as if people were not paying attention. (I know, being brave often means making tough choices despite fear–but all I chose was to do exactly what my doctor told me to, because I was scared of dying, so that does not count as exceptionally brave.) The best I can say for myself was that I was not afraid to ask for prayer or help, but as I have pretty much no innate sense of medical privacy and I really needed help, this too was much more survival instinct than courage.

Eventually I gave up on trying to convince anyone that I was not brave or noble. If you have cancer and do not happen to be brave and noble, I recommend not arguing with people about this. Yes, it’s annoying that people are misperceiving you, but there are way worse labels you could get stuck with. Besides, there is nothing you can do about it—if you spat in someone’s eye, they would probably interpret that as a brave and noble triumph of the human spirit over the dry mouth that comes with chemo.

Basically, when people say “you’re so brave,” here’s what they mean:

“Our society has focused so much on separating us from any familiarity with death—by worshipping youth, by walling off death behind hospital doors, by displaying dead people at funerals only in an embalmed and painted state—that I not only fear death, but also have no experience thinking about it. People in previous centuries hoped to see death coming days or weeks in advance so as to have time to compose their souls to meet their Maker, but I hope to die instantly in my sleep so that I’ll never have to think about death even for a minute. Therefore, the fact that you may be thinking about death makes me regard you as someone somehow separate from and more powerful than me.”

Or,

“Consumer society encourages me not to think about God, the sacred, or anything more transcendent than romantic love (which is the most transcendent thing that can still be used to sell a car or a bottle of soda). Death reminds me of the transcendent idea of the afterlife, so when I personally encounter someone who might encounter death, particularly at an earlier age than expected, I see that person as having a numinous aura around her, which I vaguely interpret as nobility and courage.”

Or,
“I feel empathy for your pain and want to say something encouraging, and I’m either not religious or I’m afraid that if I tell you God is with you I’ll be pushing something on you which you might disagree with. Our society believes in selves far more than it believes in God, so I will offer your self words of praise, even though they might not be remotely accurate.”

There you have it: it’s not about you. It’s just something people feel compelled to say. Ignore it and move on.

Besides, if my experience is any indication, eventually surviving cancer may make you somewhat more brave (not sure about the noble).

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.

Tag Archives: cancer

Well, THIS isn’t good.

HECK yes, you need health insurance

Let’s Talk Sky-High Medical Costs (and one thing that doesn’t suck about the Cheesecake Factory)

Have Cancer? You Are Now Officially Brave and Noble