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The Shape of Cancer (graphics heavy)

by Izzy Fri Aug 10th, 2007 at 01:49:08 AM EST

There are certain things in life that are too large and complex to take in as a whole.  The mind simply balks at certain prospects.  The enormity of some things can't be felt all at once lest the heart becomes too heavy.  We can only be guarded, glance at them, let in just a little.  

Cancer is one of these things.  They tell you to face it head on, but they're wrong, it's impossible.  You've got to deal with it in pieces.  Meet it obliquely.  Think of it in bits.  Feel it in moments.  

Let your guard down, take too much in and you're caught overwhelmed, catching your breath, collapsing into a seat, buckling at the knees, not knowing what to do next.  

Cancer is simply too big.

My dad's type is small for a cancer.  It's aggressive, but hasn't spread.  It's one of the most treatable types.  We're lucky I suppose.  He was diagnosed in March and I've been meaning to write about the financial aspects of our ordeal.  I got my parents' permission months ago.  It seemed to me it would be an informative and useful thing to do, to show people what it's like to be sick in America.  

And money is straightforward enough.  I envisioned telling you about my parents' budget, outlining their monthly medical expenses, describing the intricacies of their insurance coverage, damning the medical industry with facts and numbers.  No need to get all emotional about it, it's all there in black and white.

But I've found that I can't write that imaginary article.  I've tried, but things are all tangled up somehow in everything else.  They've become fragmented. I'll start with a fact and find it stuck to a feeling.  I'll relate an action and find it wrapped in a memory.  I've lost the ability to be linear.

Here's a piece of it:  The man I call my dad is really my step-dad.  I wasn't even small when he married my mom.  I was fully grown at the time.  Yet he's been my only dad and a word that once meant nothing to me is now filled with love and memories.  He's a good and kind man, always young at heart.  He was a journalist for 40 years, but he'll correct you if you call him that.  "What's a journalist anyway," he'll say.  "Sure they went to college, but can they write?"  He calls himself a newspaper man.  

He tells a great story, my dad, and he loves a good laugh.  He's got a big heart and has led a big life.  He's been a wonderful grandfather for all of my son's twenty years.  We walk into the hospital every day now to get his radiation treatment and we pass through this lobby.  

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I think it's designed to impress, but it doesn't.  It's just too big.  I know my parents feel it, too.  My dad shrinks a bit in his wheelchair every day and I get angry at this excessive lobby for making my dad feel small.

His heart's another piece:  He went in for a physical in the early 90s and ended up having a quintuple bypass.  His heart was so bad they wouldn't even let him walk up the steps to the hospital.  Although he was a union guy and had good insurance, the medical bills wiped out their savings.  Not long after, he was forced into early retirement.  He wasn't so young at heart after that.  His life started shrinking then.  So did their finances.

As we walk through the hospital to the cancer center, there are so many nice touches -- soothing aquariums, beautiful flowers, even a grand piano --

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-- but I can't enjoy them.  I'm thinking about the money, the costs.  I suppose in this system it makes sense -- they have to attract customers, make a profit.  I wonder about the people who do these jobs -- tend the garden and clean the ponds -- do they have health benefits?  Can they afford treatment here?

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It doesn't seem right to be so concerned about money at such a time.  It seems so grubby and mean.  But there's the reality of a fixed income and no amount of staring at fish can distract me from that.  It's consumed me these past weeks.  I've gone over and over the budget and the numbers don't work.  They have insurance.  It all seems reasonable at first -- $15 co-payment for the doctor, $30 co-pay for specialists -- it doesn't seem that bad in pieces.  As a whole, though, it adds up.  It crushes.  Two visits to the doctor and three to specialists just last month -- $120.  And they already pay $226 a month for my mom's insurance and $95 a month for my dad's.  Not to mention over $600 a month for the medications, and that's just the co-pays.

The last visit he was supposed to get a shot and they sent us home instead.  It cost $1,500 and needed pre-approval from the insurance so we had to wait.  The co-pay on the shot would be 33%.  And the bills had come in for the tests, the ultrasound, the CT-scan, the MRI -- almost $800.  They didn't have it.  

A few years ago, my dad's pension people had informed him they were canceling his $20,000 life insurance policy and replacing it with a $10,000 health savings account.  What seemed like an affront at the time now felt like a godsend.  I spent two weeks going through all their paperwork, statements, receipts, frantically trying to get reimbursed for expenses paid over the years to cover the current expenses.  

And they won't even tell us how much the radiation will cost.  They claim not to know, but said it will be "thousands."  We're wondering how long that ten grand will last, if it will get them through these 42 days.

I know my dad is thinking of this as I wheel him into the cancer ward.  There's an indoor fountain and various art that I presume is supposed to be comforting.  "What is this, a museum?" my dad asks.  

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The waiting room is pleasant and has its own pond just outside the window.  

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There's coffee and tea, magazines and a puzzle.  A fridge stocked with juice and fattening nutrition drinks.  We all grab drinks every day, working off the same impulse -- might as well get what we can out of them.

That first day my dad looks down.  I'm staring at the pond and I suddenly see him.  I see him objectively -- the newspaper man with the big life is gone for now.  The survivor of the Great Depression, the Air Force man, the jazz musician, all distant memories.  I see my dad, my son's beloved grandpa, looking fragile in this room.  He's sick and he's suffering.  What's worse, he feels like he's a burden.  He fears he can't pay for all this and feels he failed somehow.  He told us the other night that we'd be better off without him.

I reach over and pat his arm.  We're not sappy people, neither of us, and we take some pride in that, but he clasps my hand on his arm and tells me he's so happy he has me for a daughter.  That he's proud of me and that I've made his life so much better than he'd imagined.  I kiss him on the top of the head and say I love him too.

When the technician wheels him out to the treatment room, I sit for a minute and am suddenly consumed with fury.  I am incensed at this system that profits off the sick.  I am enraged that it's made my dad feel small.  This is a place where people come to face death.  A place of healers and transformations.  If that's not sacred then I don't know what is.  

For a moment I feel strong in my rage and I want to tear the art off the walls and smash the windows and run the moneychangers out of the temple.  But just for a moment.  Nothing will be solved by a smashed vase.  Nothing will be solved by one person.  The problem is too big.  The rage quickly passes and I'm just tired and sad.  I go sit at the table and stare at the puzzle for awhile, but I can't get a single piece to fit.

I feel I should say that all the doctors, nurses, and technicians couldn't be nicer.  And I know this sounds embarrassingly hokey, but somehow it gives me hope to see those puzzles being completed.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Fri Aug 10th, 2007 at 01:53:02 AM EST
Sorry for your troubles, Izzy. You know, I moved from America, at age 53, in 1990, not because i wanted to escape America, but I had a new French wife and had always wanted to live in Paris. (Things were not so bad in the U.S. in 1990.) After reading this diary and all the diaries by NYC Eve on Daily Kos, I now feel that I have escaped America, and thank my lucky stars every day. I hope you can fix it over there.

Hey, Grandma Moses started late!
by LEP on Fri Aug 10th, 2007 at 02:44:14 AM EST
[ Parent ]
Thank you, LEP.  It is a hellish situation over here.  I'm glad that people like Eve are trying to fix it.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Fri Aug 10th, 2007 at 03:08:01 AM EST
[ Parent ]
I wasn't sure I should post this because it might insult people who left the U.S. by implying they had ulterior motives in marrying their spouses, which isn't my intent (the Taoist paradox about human language being insufficient to describe exactly what we mean just will not let me go). But this reminded me of something.

When I saw SiCKO I of course stayed for the credits, in which Moore had a note about www.hook-a-canuck.com, for Americans wishing to marry Canadians for the health care. It was funny, but am I the only one thinking that this is pretty much the same as being a mail order bride or groom? That things have gotten so bad here that something once considered the territory of melodramatic legal TV shows, used only by those from what we pretentious Americans considered poor, developing, or crumbling nations, is now a possible route for us to "a better life"?

I haven't looked at the site, so I'm not going to assume anything about it other than it's probably a regular dating site, where you have to find someone that, you know, you can actually get along with. :)

I'm not talking about people who marry someone who just happens to be from outside the U.S. or those who (semi-)jokingly ask about marriage for EU citizenship-- I'm also not trying to insult anyone or cast aspersions, or anything like that (and I really don't blame anyone for considering marriage as a way out, either).

Of course I have to end this by asking which ETer is gonna marry me to get me out of here when it all hits the fan. ;)

by lychee on Sun Aug 12th, 2007 at 02:11:23 AM EST
[ Parent ]
Good luck to both of you. May everything go well and recovery be quick.
by lychee on Fri Aug 10th, 2007 at 03:39:31 PM EST
[ Parent ]
I am incensed at this system that profits off the sick.

And not just the physically ill, but many other kinds of sickness too.

We're a few years behind you here in the UK, but unless something changes I'd guess we'll be seeing the same scenes here within ten years. France is looking increasingly attractive.

I hope they sort things out for your dad, anyway.

by ThatBritGuy (thatbritguy (at) googlemail.com) on Fri Aug 10th, 2007 at 04:00:56 AM EST
Thanks, TGB, and good point about the other types of illness.  I have relatives in Britain, so have been keeping a wary eye on what's happening to the healthcare system there and, especially, long-term care, which is another thing I didn't mention.  I remember way back when, my step-grandmother's mother was in a lovely nursing home and it cost either nothing or next to it.  Now my step-grandmother herself is in a home, and it's basically going to cost her all the assets she had.  Still, I think when her assets run out she'll still get care.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes
by Izzy (izzy at eurotrib dot com) on Fri Aug 10th, 2007 at 02:05:08 PM EST
[ Parent ]
So sorry to hear about your problems.  My dad died of cancer but that was years and years ago.  They have much better treatments now.

This worry about money when one is sick cannot be helping a person to heal.  What a shame that such a wealthy country allows its sick people to suffer so.

by zoe on Fri Aug 10th, 2007 at 06:01:51 AM EST
Good diary Izzy.

Hang in there.  It's an outrage that, at a time like this, people have to spend their time ploughing through paperwork and crunching numbers and trying to figure out how to make the numbers work.  

And, of course, the numbers never work.

by Maryb2004 on Fri Aug 10th, 2007 at 10:31:31 AM EST
Good to read that the treatment has finally started. Rage can be an ally and can help to move through difficult situations. But tough situations like this can also create even deeper bonds of love between people. So, I hope things will work out for you all.
by Fran on Fri Aug 10th, 2007 at 02:50:37 PM EST
Thank you for sharing your experience, Izzy; such a wonderful piece. Hugs and good wishes for to you and your family.
by iamcoyote (iamcoyote at gmail dot com) on Fri Aug 10th, 2007 at 04:33:11 PM EST
Izzy, thank you for writing this.  I wish your dad and your family find peaceful times to be together and soothe all the roughness of this process.  

Please tell him that he will never owe a thing to the system, but the other way around!

Our knowledge has surpassed our wisdom. -Charu Saxena.

by metavision on Fri Aug 10th, 2007 at 05:55:24 PM EST
Izzy, I spent most of yesterday trying to think of how to respond to your diary.  I started writing three or four comments and deleted them because they just weren't right.  I'm not sure this one's right either, but I feel like I have to say something.

Some of you know that the reason I've been scarce around here lately is because I'm dealing with my own medical "challenge."  I came back to the States a few weeks ago for what's considered a fairly minor or routine surgical procedure to repair a fairly common injury.  I've come to the conclusion that there's no such thing as "minor surgery," because the recovery so far has been much more difficult than I expected, both physically and psychologically.  But I am recovering.

But this trip to the States has been a re-introduction to the joys (snark) of the US healthcare system, not just in relation to my case (I have good insurance, which I've never actually used for anything before) but in the cases of my relatives and neighbors and friends here.  It seems like I'm surrounded by people (neighbors, relatives) who are facing huge "health challenges," some of them that are (unlike mine) life-threatening or permanently disabling.  I've stopped counting the number of healthcare horror stories.  Each of these people has not just his or her own medical condition to worry about, but also faces a maze of insurance forms and bureaucracy, sometimes shoddy medical care, negligent staff in rehab facilities, shockingly expensive prescription drugs, and overbooked doctors.  (There is, astonishingly, only one rheumatologist within 50 miles of my parents' community, which is jam-packed with retirees and, presumably, lots of arthritis patients.)

Dealing with serious medical issues is hard enough, physically and psychologically, even for someone like me, who's relatively young and healthy, with good insurance and a good prognosis -- it's been depressing and energy-sapping for me even though I expect to recover.  It is a whole order of magnitude more difficult for someone with an uncertain prognosis, someone who is coming to realize that the vigorous person she used to be is not who she is anymore.

Our healthcare system should be helping people meet those challenges, helping them face those difficulties.  Instead, our healthcare system is adding to them.

I'm angry and frustrated and wondering exactly how bad it's going to have to get before We The People rise up and demand that this change.

Anyway, Izzy, thanks for this heartbreaking diary, and for putting a face on it all for us.  And good luck to your Dad and the rest of your family.  And good luck to you.

by the stormy present (stormypresent aaaaaaat gmail etc) on Sat Aug 11th, 2007 at 02:43:12 PM EST
I wondered why you barely posted.  I hope it goes easy for you and I'll send good thoughts.

Our knowledge has surpassed our wisdom. -Charu Saxena.
by metavision on Sat Aug 11th, 2007 at 03:09:00 PM EST
[ Parent ]
Thanks, stormy -- this comment seems just right to me.

It's good to hear from you, although I'm sorry to hear it's been so rough.  I hope you'll feel much better really soon.

Maybe we can eventually make language a complete impediment to understanding. -Hobbes

by Izzy (izzy at eurotrib dot com) on Sat Aug 11th, 2007 at 03:11:27 PM EST
[ Parent ]
Good to hear from you stormy and at the same time I am sorry to hear that your recovery is more difficult than expected. Lots of goods thoughts for you and your recovery and I hope you are back soon. :-)
by Fran on Sat Aug 11th, 2007 at 03:47:47 PM EST
[ Parent ]

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