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[cancer] Class privilege and chemotherapy - Lakeshore
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Jay Lake
Date: 2010-08-02 05:20
Subject: [cancer] Class privilege and chemotherapy
Security: Public
Tags:calendula, cancer, health, healthcare, seattle, work
I was having breakfast with calendula_witch and markferrari this past Saturday morning at Portage Bay Cafe in Seattle's U district. The wait staff were moving back and forth, every one of them fast on their feet, when it occurred to me to wonder how someone with a job like that would have fared through the chemotherapy regimen I just endured.

That in turn unfolded to realization that most people working in the service industry would be at risk of their livelihood in my situation. I spent the last two months of chemo sitting down, and moving very slowly when I was up, the two months before that not so much better. A job that required me to be on my feet all day, or driving a vehicle to service calls, or shifting stock or pulling parts, would have been impossible.

How would a waiter, or a plumber, or bookstore clerk, maintain their livelihood through such an experience?

I am lucky. I have a well-paid job that mostly involves sitting still and thinking. Or reading and writing, but those are still essentially sitting and thinking. I have a job I could meet the requirements of even through the worst of chemo. A high-end, white collar job open only to someone with a decent-or-better education and the life skills to navigate corporate politics and policies, and the intricacies of American business.

Even then, if I'd been a daily commuter, I'd have been sidelined badly. That my sit-down-and-think job is work-at-home employment meant I was almost perfectly suited to continue through chemotherapy without financial or workplace disruption.

This strikes me as class privilege, a benefit of being a (relatively) high end white collar worker with seniority both in my field and with my employer. And therefore, ultimately a benefit of the accident of my having been born white, male and middle-class into a household with high educational and professional expectations that was able to raise me with the skills to meet those expectations. I cannot imagine the stress of making my living as a waiter at Portage Bay, then having to accept the time and energy limits I endured in the chemotherapy process. That's completely outside the narrow medical issues, and even largely outside the issues of insurance coverage and so forth.

Do oncologists take this sort of thing into account? Do employers with shift work and hourly wages allow this much latitude to their employees? Watching the wait staff made me realize how damned lucky I have been, and continue to be. As brutal and difficult as this all has been, I keep finding new things for which to be thankful.

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Jay Faulkner
User: jayphoenix
Date: 2010-08-02 12:36 (UTC)
Subject: (no subject)
Your post is very thought provoking.

I live/work in the UK where the NHS is most definitely a good thing as, if I get ill, I get looked after. I don't have to worry about how to pay for treatment, I just have to worry about getting better.

On top of that I also work for the Government where, like you, I am in the luxurious position of being relatively senior in my field/department. One of the 'perks' of my job is that, if I do get taken ill and need time off, I get full pay for six months and half pay for a further six months. That is a year where, in the case of a serious illness, I only have to worry about getting better.

If I worked in the service industry, here in the UK, I would have to worry about finding a new job if I was unable to do it through illness ... which, obviously, must make getting better harder.

I hadn't really thought of that previously (probably a benefit of 'privilege' is that one doesn't think of it, it just 'is') but I have ... and am ... now.
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cathshaffer
User: cathshaffer
Date: 2010-08-02 12:37 (UTC)
Subject: (no subject)
Yeah, cancer or any chronic illness is tough for people doing hourly labor without disability benefits. Blue color workers with union jobs usually have pretty good disability insurance, and if you are going through chemo and have a physical job, you pretty much have to take disability. The vast majority of people with cancer are older, and thus less likely to be waiting tables or climbing up on roofs, but being stricken with cancer at a point in life when you are depending on a job like that is a whole other kind of suffering. My friend Kevin who passed away this spring worked in uniform sales, and he was never able to work through a chemo cycle. His employer was great about giving him leave, though.

Actually, I think you've been unfortunate not to have better coverage for long term disability, because I know it's been tough for you to work full time through this. Even though it's not physical labor, desk work can be very exhausting.
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cathshaffer
User: cathshaffer
Date: 2010-08-02 12:39 (UTC)
Subject: (no subject)
I also know someone who got fired from a job with decent benefits when she told her employer she had cancer. It's illegal, but I don't think she had the energy or means to sue him.
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Eposia
User: eposia
Date: 2010-08-02 13:41 (UTC)
Subject: (no subject)
My surgery happened in a teaching/charity based hospital, so I have a bit more awareness of the poverty end of things even just by proximity. The hospital has a deal with the pharma companies to get things like chemo drugs for low or no cost, and they charge less for surgery than some other places, but since we had no insurance at the time of service nor Medicaid, our surgery bill easily topped 30K$.

And yes, there are no charity-based programs that I easily encountered that do any kind of job skill retraining or short-term disability work help for poverty-level cancer or chemo patients.

If I did not have a husband willing to work to bring in the financial portion of things while I've been sick and recovering, I would probably have had to go back to live with my parents in order to survive cancer, surgery, and whatever comes next. Most of my non-writer training is in restaurant management, large animal handling, and other on-your-feet, high-energy-output jobs, and I unfortunately got cancer at the beginning of my writing career, so I don't even have income from that yet.

Thanks for seeing through the window of your inborn privilege enough to write about it! Part of what frustrates me daily is how few of the otherwise intelligent and insightful people I know and love actually push themselves past that uncomfortable boundary to look at how the other sides live.
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Jay Lake
User: jaylake
Date: 2010-08-02 13:55 (UTC)
Subject: (no subject)
Thanks for seeing through the window of your inborn privilege enough to write about it!

What boggles me is that it took me this long to even *notice*. Which is, I suppose, why they call it 'privilege'...

Sigh.

I am glad you guys were able to make it work.
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User: joycemocha
Date: 2010-08-02 14:28 (UTC)
Subject: (no subject)
Imagine being a teacher and going through chemo and radiation.

I've known two of them, both with breast cancer. I also know an eleven-year survivor who just fell apart when she had a scan come back looking hinky. Fortunately, it was a false positive, but she literally could not face going through it again.

Since I've gone into teaching, I found out that it is one of the highest risk occupations for breast cancer. You can't keep working through chemo and radiation as a teacher--you work as long as you can, then take sick time and hope to hell you've accrued enough or that your district allows for the use of a catastrophic leave bank, and that your friends and colleagues have enough leftover sick time to donate to your catastrophic leave account.

Most teachers usually have extra sick time, unfortunately. We tend not to take it because prepping for the substitute is often more work than dragging our sick behinds to work and dealing with the little darlings.
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Jay Lake
User: jaylake
Date: 2010-08-02 14:48 (UTC)
Subject: (no subject)
I have to say, having just finished six months of chemo hell, the prospect of another six months starting this fall is pretty damned devastating...
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inflectionpoint
User: inflectionpoint
Date: 2010-08-02 15:11 (UTC)
Subject: (no subject)
This.

This is why I'm delighted that the city of San Francisco adds a small tax onto every restaraunt meal to work toward service workers all getting paid leave. Some jobs don't include paid sick leave, unless you're in SF! It's work sick or don't get paid at all.

Good observations.
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e_bourne
User: e_bourne
Date: 2010-08-02 15:21 (UTC)
Subject: (no subject)
My sister retired when she was diagnosed. This is pretty much white privilege in that she could retire, had a pension coming, and was 60-ish. Her husband was already retired so they just shifted gears and became old early. Her commute into DC was over an hour a day. Impossible.

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Jay Lake
User: jaylake
Date: 2010-08-02 15:28 (UTC)
Subject: (no subject)
Yeah. My retirement assets got wiped out when the Internet bubble burst, a combination of equity loss and having to eat them during 2 years of unemployment. So that's not an option, and may never be.

Sigh.
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shelly_rae: Texas Long Horn
User: shelly_rae
Date: 2010-08-02 15:50 (UTC)
Subject: (no subject)
Keyword:Texas Long Horn
My first diagnosis came just as I started college at an expensive university on full scholarship. When I was told by the docs that they couldn't cure my cancer I left school--didn't seem quite so important. I did finish the semester--with As (yay me). When things changed and I reapplie,d that scholarship was no longer available for me. I was not able to go to school full time anyway, so I did the community college thing, got an AA degree. We grew up poor so my parents, while they helped with food, could not pay for college so I worked, finished chemo, healed, took classes. It took me almost ten years to get my BA, another five to do the MA. But if I had anyone to support? None of that would have happened.

I lived out of my VW van for much of the post "cure" time. I regularly stopped in at a commune in Capitola where I could do laundry, shower and stuff in exchange for cooking, dishes, and gardening. I visited people but I did not "live" anywhere. If I had gone home to the farm or back to the rez I would have been far from the doctors. But I had no money for rent so I did what I could.

Insurance didn't cover my "cure" as it was experimental. The hospital, a teaching hospital, took me on as a charity case and saved my life but everything was accounted for, billed. I think only my youth and NA tribal status allowed them to write all that off. Is that class priveldge too?

Having been through much of your treatment with you I know that you got far better care, followups, and had nicer surroundings. But one can't really compare a charity hospital in SF with a private one in Portland.

I'm awfully glad you're here.

Oh look into your insurance and see if there's an extra policy that covers everything. I cannot recall what it's called but it's out there.

Anon
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Jay Lake
User: jaylake
Date: 2010-08-02 15:52 (UTC)
Subject: (no subject)
And I am glad you are here. Our paths were very different, and I have benefited from a great deal of both luck and privilege. But as we both know, it's a stone bitch no matter what. :(
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(no subject) - (Anonymous)
Pam
User: musingaloud
Date: 2010-08-02 16:46 (UTC)
Subject: (no subject)
CA has a pretty good state disability program. Sometimes too good, as it's taken advantage of quite often. But still, I was surprised reading all this, I thought it was a federal thing, but now I realize it is state disability. Payroll taxes. I don't know what the cost to the employers is, but the employee amount isn't all that big of a bite. I don't think it equals 100% of your pay, but I don't think it's as low as 60%, either.
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W. Lotus: Peaceful
User: wlotus
Date: 2010-08-02 17:10 (UTC)
Subject: (no subject)
Keyword:Peaceful
I am amazed at how aware you are of your privilege. Many of us are not.
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Jay Lake
User: jaylake
Date: 2010-08-02 17:14 (UTC)
Subject: (no subject)
Thank you. Your comment is especially ironic to me, given that for a whole swathe of people in SF's corner of the Internet I am the poster child for ignorant, arrogant white male privilege. (No, I don't understand it either.)
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User: saoba
Date: 2010-08-02 18:03 (UTC)
Subject: (no subject)
What do they do?

In one case I am familiar with- the 19 year old dropped out of cosmetology school, her 20 year old husband continued to work his warehouse job with almost no benefits, friends helped them afford to break their lease and move in with housemates elsewhere rent free and those same friends paid a share of the household's bills so someone could stay home and help care for her, take her to appointments and sit with her during inpatient chemo.

Her husband had to keep working or there was no insurance.

Without that help I suspect she would not have gotten the aggressive treatment her cancer needed. And I very much doubt she'd be alive and healthy and the mother of two today.

The short answer is they work until they can't and sometimes even longer and they go without treatment they need.
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They Didn't Ask Me
User: dr_phil_physics
Date: 2010-08-02 19:47 (UTC)
Subject: (no subject)
See, this is what I want to hit people over the head with. How can we have the Best Health Care in the World such that it cannot be dared to be tampered with and the so-called Obamacare is Teh Evil, when it is patently obvious that a whole lot of people are either in no position to get sick, or if they do, might end up getting care while homeless or "forced" to work or other situations which are clearly counterproductive to getting good health care?

This blame the patient for getting sick routine is really bullshit and needs to be called bullshit. (sigh)

Dr. Phil
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User: tillyjane
Date: 2010-08-02 20:41 (UTC)
Subject: medical costs
Jay asks: "Do oncologists take this sort of thing into account?"

My sense of it after years in the medical care world, is no, they probably dont. I think from the doctor's POV one recommends the best possible practice, and its up to the patient, the payor, and the billing office to work out the rest. This can be extremely burdensome on the patient. If the patient says "No, I cant afford it" the doctor may be able to fall back to a next best option. Or not, if there's none that meets the current standard of care.

I often have to work with my internist on meds, to get a generic when at all possible. He now knows we're going to have that conversation and will offer the option when its available, but I think its only because I have pushed the issue over and over.

Ive been profoundly grateful all along that you had a job that you could do during the miseries of chemo. In my public health life I saw way too many who couldn't.

Here's to you, my dearest, long life and good health

TJ
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auriaephiala
User: auriaephiala
Date: 2010-08-02 21:44 (UTC)
Subject: (no subject)
Coincidentally, this was in today's newspaper:

(And this is in Canada!)

http://www.ottawacitizen.com/health/Poor+people+less+likely+survive+cancer+than+rich+study/3349993/story.html

Poor people less likely to survive cancer than the rich: study
By Meagan Fitzpatrick, Postmedia News August 2, 2010

OTTAWA — Cancer patients from rich communities have better survival rates than patients from poor ones, according to new Canadian research.

The study, being published Monday in the American Cancer Society's journal CANCER, found significant differences in the survival rates of patients from various socioeconomic backgrounds.

With several different cancers, patients living in lower-income communities had a greater chance of dying prematurely than patients from higher-income areas, the study says. [...]
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fledgist
User: fledgist
Date: 2010-08-02 23:38 (UTC)
Subject: (no subject)
The poor frequently live foreshortened lives in which disease plays a large role.

I think you're being very honest about your privileges of class, race, and gender. That's to be applauded.
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slweippert: Muse laughs
User: slweippert
Date: 2010-08-03 03:08 (UTC)
Subject: You're joking right?
Keyword:Muse laughs
"Do employers with shift work and hourly wages allow this much latitude to their employees?"

No. Employers in those industries replace you.
For example please see this panel from A Year in Waiting.
http://big-big-truck.com/ayiw/11.html

Any job I have had in my life, from legal assistant to massage therapist, if I was in your situation, I would have lost my job and then my life. Period.

This is why people who are lucky enough to have good medical insurance from a job like yours believe that we have such a great medical system in the USA.

I have friends who still don't understand why health care was/is such a big deal in Washington D.C.



Edited at 2010-08-03 03:09 am (UTC)
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Jay Lake
User: jaylake
Date: 2010-08-03 12:15 (UTC)
Subject: Re: You're joking right?
This is why people who are lucky enough to have good medical insurance from a job like yours believe that we have such a great medical system in the USA.

You'll note that I am not one of those people who think everything is so great, and I *am* one of the lucky ones.
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