Category Archives: Cancer

Got a Story?

On Monday, September 25, 2017, the Senate Finance Committee will hold a hearing on the disgusting excuse for a GOP replacement plan for Obamacare — the “GOP Doesn’t Give A Shit Plan” I believe is the working title for the bill.

The Senate Finance Committee is looking for stories.  Healthcare stories.  What your life is like as a person with health issues, or with family members with health issues.  Or with the expectation that some day you will fucking get sick.

Comments can be submitted to this email address:

GCHcomments@finance.senate.gov

Comments are due by noon, Monday, September 25.  Go on over there and give them a piece of your mind.  Or hell, tell them what I think if you’re at a loss for words.  Or just say:  “This bill sucks.”  Copy your message to your own Senators (addresses can be obtained via Senate.gov).

It’s important.  Because look at this:

Cassidy-Graham

I cordially invite you to post a link to your own story here on my blog.  Hell, I’m not using it much these days!

Me?

Well, you know the story I will tell.  About what can happen when a person has no insurance.  Of course you do.  But just in case you’ve forgotten …

* * *

The End of My Rope

Friday, the first of October, 1982, was a really bad day.

Actually, it was a mostly normal day even after I found a memo and a pamphlet in my office in-box. The law firm where I’d worked for more than three years had just changed health insurance companies. The information about our new policy, beginning November 1, 1982, three weeks before my scheduled surgery, would be with Liberty Mutual. I didn’t give it a thought.

But Andrea, one of my bosses, suggested I give them a call. “You’d better make sure they know about your operation and don’t need more information.”

So I called the number on the brochure.

Forty-five minutes later, Andrea found me at my desk, staring blankly at the ‘Sitting Duck’ poster hanging on my wall. It showed a white cartoon duck wearing sunglasses.  He’d been enjoying himself, sitting in the sun in a turquoise blue lawn chair on the side of his house, sipping a soda.  But he was looking in wide-eyed surprise over his right shoulder at two bullet holes in the wall.

Sitting duck poster

Poster by Michael Bedard
http://www.mbedard.com

I knew that if I looked over my shoulder, I’d see some bullet holes as well. I was that sitting duck — I always seemed to be dodging bullets.  Life with chronic illness had become one fucking thing after another.  Now, just when I’d accepted and agreed to the surgery that so terrified me, my insurance was gone.  BANG! BANG!

“What’s wrong?” Andrea asked.

“It’s not covered,” I said, numbly, without a hint of emotion. Then I began to hyperventilate. “’Pre-… pre-… pre-existing condition,’ they said.”

“What?”

I explained what I’d been told, that the new policy didn’t cover anybody for 30 days and that it didn’t cover pre-existing conditions for a year. The firm had changed insurance to save money. Their decision would cost me everything. Everything.

I didn’t want to have the surgery — it terrified me. But I’d adjusted, accepted that I was, in spite of my attempted denial, quite sick, and that I had to have the operation. But I couldn’t possibly pay for it. Where was I going to get the tens, maybe hundreds of thousands of dollars I’d need? I lived pay-check to pay-check, and rarely had a nickle to spare; I had no savings. My parents were retired, living close to the bones themselves. My siblings were likewise broke. And I had insurance!

Loss of the insurance meant one of two things.  I could have the surgery that I really didn’t want to have anyway and pay for it myself. Or I’d face another year of ever-worsening illness — hemorrhages, bleeding, weakness, diarrhea.  Dr. C had been clear — my colitis was not just going to go away, as much as I wanted it to.

Without insurance, even if I could convince my surgeon, the hospital and the zillions of other folks involved in a major operation to actually do the surgery on someone without insurance, I knew that I would spend the rest of my life trying to pay the bills.  Bills that would have been covered just the day before.

My mind whipsawed between the injustice of the loss and terror at what would happen to me if I didn’t have that damn operation.

Andrea came around to my side of my desk and put her hand on my arm. “We’ll figure this out, Elyse. It’s late now, everybody’s gone. But we’ll work this out on Monday.”

She sounded reassuring; I was unconvinced.

“Really, it’ll be OK,” she repeated. “But in the meantime, I need you to …”

Her voice trails off in my memory. Andrea was a compulsive workaholic, an A-type personality. Work always came before anything else. Other people at the firm thought it was annoying, insensitive, or worse. But for me, it helped. It was exactly what I needed. It took my mind off me. I did what she asked, finished up and went home.

Of course I fell apart once I was home and told my roommate, Keily, the news. I ranted, raged, and cried — I wallowed all evening.

“I don’t even want to have this operation,” I shouted as loudly as I could to Keily as I sat in the bathroom, the door open. My gut, naturally, was erupting. It almost always was by then, especially when I was upset. Cramps. Diarrhea. Blood. Urgency. My shitty symptoms mocked me, proving that I couldn’t avoid the surgery. That I couldn’t put it off until my insurance kicked in. That I was totally screwed.

Keily sat outside the bathroom at the top of the stairs, stroking Goliath; that was her perch as I got sicker and sicker. She sat there and talked to me. She kept Goliath out of the tiny bathroom (Keily’s only successful effort at getting the Goose, as we nicknamed him, to obey.) That night, she held Goliath, and soothed him and me at the same time. She let me vent, rage, rant.

“It’ll work out. There’s some mistake. They can’t just do this to you. You need to trust the folks at your office.” Keily said repeatedly.

“You mean the ones who agreed to the new policy?” I wasn’t in a mood to listen.

That night I’d skipped Goliath’s after-work walk. It was getting on towards 10 p.m. and he needed to go out. I needed to do something else, or at least cry somewhere else. Walking clears my head, lets me figure out how to fix a problem, helps me find an answer. I knew a walk would help.

“Do you want me to come?” asked Keily. She often did, and that night she was concerned. I was so shaky and upset.

“No, thanks, I think I need to be by myself,” I responded. “I’ll be OK.” Actually, I was wishing I could leave myself behind. I was sick of me. Sick of sick me, anyhow.

So Goliath and I got into the VW and headed to the Capitol grounds, where we walked most nights. It’s such a beautiful, inspiring place. Plus for a woman walking her dog, it’s perfect. Of course it’s well lit — you can see it for miles. But there are also security patrols that never bothered us but nevertheless made me feel safe. A 120 lb. German Shepherd helped make me feel secure, too.

It was a clear night, with a half-moon casting shadows from the beautiful cherry and oak trees, from the enormous rhododendron bushes and other carefully tended shrubs across the expansive West Lawn. Nobody else was in sight.

I let Goliath off his leash. Deep in my own thoughts, I didn’t pay much attention to him. Unusually, he stayed right with me that night. He was as worried as Keily.

I cannot believe this is happening to me, I thought, rage building again at the injustice. Because my whole entire adult life had been focused on making sure I had health insurance.

From the time of my first hospitalization at 17, I had lived my life — made every single decision — with health insurance in mind. My dreams of acting, of singing, of writing? Of doing whatever the hell I pleased? They’d all been flushed down the thousands of toilets I’d had to rush to over the 10 years since my diagnosis.

After my first hospitalization, and with word from the doctor that my ulcerative colitis would likely flare up repeatedly throughout my life, my parents forced me to go to secretarial school – a career path that had never figured into my plans. My mother was an office worker and she’d always hated her job.  It seemed boring and demeaning. Secretarial work had once been a good career path for bright women. But that, I thought in my young “know-it-all” way, was no longer the case. Mom was stuck with it, and she and Dad stuck me with it, too.

I complained bitterly; I was talented, funny, smart. It wasn’t fair.

I was wrong about both the work and the women who worked as secretaries. I quickly became pretty ashamed of my attitude, and some of the secretaries I knew became great friends.

Still when the chance emerged to turn a secretarial job into a job as a legal assistant, I jumped at it. In the job I’d had now for three years, I wrote for a living, analyzed legislation and regulations for the firm’s clients and learned about U.S. politics and policy. It was a terrific job. The firm had been good to me. And my parents were happy because I was still working in an office. With health insurance.

Another wave of anger came as I walked down the groomed hillside.

And then I saw it. Something I’d never seen there in the dozens of times I’d walked that route. Inexplicably, on the West Lawn of the U.S. Capitol Building, there was a pole sticking out of the grass with a chain attached at the top, and a ball hanging down.

Tetherball.

I walked up to it and started smacking that ball. I’d only seen cheap sets with rope attaching the ball to the pole. This one had a strong chain that was covered in a canvas sheath. But instead of improving my mood, hitting the ball deepened my feelings of desperation.

SMACK. I hit the ball as hard as I could. “MY BODY HATES ME!” I shouted as I pushed the ball around the pole.

WHACK. “MY LIFE SUCKS!”

SLAM. “Fucking, fucking FUCKING INSURANCE!

SMACK, SMACK, SMACK. “Hopeless. Hopeless. Hopeless.”

With each hit of the ball, I pushed myself towards the end of my own rope. There was no way to unravel all the problems I was facing, the problems that kept expanding.  Just as I thought I’d licked one, it would multiply. No way to fix all the crap that kept piling up. Crap that I suddenly felt that I was facing alone.

That was the moment when I realized, with surprising clarity, that life just wasn’t worth the trouble. At least mine wasn’t.

I decided at that moment to hang myself. I would hang myself from the tetherball chain on the grounds of the U.S. Capitol.  It suddenly became the perfect solution.

I saw no way out. I couldn’t continue, didn’t want to continue. And I’d gotten way past the amount of shit I could deal with.

I sat down on the grass on the hill just above the contraption and allowed myself one last cry. Naturally I didn’t have any Kleenex. Snot running with my tears did not make me feel any better.

The first problem I discovered was that I couldn’t quite figure out what to call the thing. It seemed important that I know what to call it if I was going to die on it.

I wondered: Is it a tetherball set? A tetherball apparatus? A tetherball thing-y? I didn’t know the answer.

Goliath tried to distract me, to cheer me and when that didn’t work, he sat down next to me and let me use his shoulder. He tried to lick my tears away, but they kept coming. He butted his head into me. But he got bored with my misery and wandered away.

I didn’t watch where he went, I didn’t care. It didn’t matter where he went, what he did. Whom he harassed. I was done.

The decision was made.

I got up and walked up to the tetherball thing-y and realized what I hadn’t noticed before: that the chain was actually quite short. Too short, possibly, for my plan. The ball itself fell to just the height of my shoulder.

I was shocked. How am I going to do this?

I reached up, stood on my tippy-toes like a kindergartner, grabbed the chain in my left hand, and tried to pull it down a little more. But it was a chain, so it was very strong and not at all stretchy. It was also pretty thick, about 2-1/2 inches wide and not terribly pliable.

I stood there, grunting, sobbing, trying to stretch my body. I held the ball and the bottom of the tether chain in my hand, trying to figure out a way to make this work. Wondering if I could quickly have a growth spurt.

How can I get this short thick thing around my neck?

Even on my tippy-toes and pulling it as hard as I could, it wasn’t long enough. It just reached from my chin to my shoulder — not even half way around my neck!

What sort of an idiot designed this damn thing with an impossibly short chain? I wondered. You can’t even smack the ball around the pole more than a couple of times.

Not to mention that it wasn’t at all helpful for putting me out of my misery.

I pursed my lips and moved them from side to side like Charlie Chaplin’s little tramp. I rubbed my chin and scratched my head.  Tried to solve the shortcomings.

Naturally, other problems popped up too.

What can I jump off of?

Of course, the answer was “nothing.” I was on the manicured grounds of the Capitol. I couldn’t pile up debris and jump off of it because there was no debris. The neat grounds rarely had much in the way of move-able objects.  I was starting to get annoyed.

I want to die. Now. Tonight. On the tetherball thing-y. How the hell can I do this?

There on the West Lawn of the United States Capitol Building — with security patrols passing every 10 or so minutes — I was hell-bent on committing suicide by tetherball.  I was trying to stretch, to grow, to find a ladder, a chair, anything I could jump off of with a piece of US Government-issued sports equipment wrapped around my neck. Wanting to and trying to die.

And then it hit me.

Or rather, he hit me. Goliath, of course.

SLAM! Something hard hit the back of my legs.

“Owwww!”

From somewhere on the grounds, Goliath had picked up a huge stick – an uprooted tree by the size of it. It was at least five feet long and four inches around. His mouth was stretched to the limit holding it. And he’d hit me with it in the back of my legs.

WHACK! He did it again. I turned and saw that he’d lowered his chest towards the ground into a bow. He kept his rear end high in the air, wagging the whole back half of his body ferociously.

He’d had enough of me feeling sorry for myself. It was time to play. So he rammed me with it again.

“Owwwww, Goliath STOP THAT!” I commanded.

He didn’t listen. He went around to my left and hit me with it again. His eyes caught the moonlight – they sparkled. He was laughing at me.

SLAP! “Owwww, NO! That hurts. Cut it out!”

He bounced to my right side with the long thick branch firmly in his mouth. Pretending to loosen his grip on it. Teasing me. Trying to get me to play. Wanting me to reach for the stick, which he would never give me.

(Come on, Mom, catch me!) He was play growling at the stick and at me. He bowed again, swung his head to and fro, and the long stick swung left to right, wobbled up and down. It got stuck in the ground for a second, and then he forced it back out again with a flick of his massive head. Goliath came close to me and then bounded off with his treasure. Circling me. Approaching me, but backing off before I could get to him. He never got close enough for me to grab that damn stick.

(Come on, Mom, try to grab it!) We were going to play, whether I wanted to or not. And he hit me with the damn thing again.

“Give me that stick!” I ordered. He wouldn’t. He danced around me and the tetherball thing-y and bashed me and the pole repeatedly.

I’m not sure if he knocked me over or I sat down in defeat, crying. He bashed it into me a few more times, but then lost interest. Goliath dropped his weapon — well out of my reach — and sat down beside me. He put his paw on my lap, his head on my shoulder and nuzzled me. Chewed at my hair and my ear. Let me scratch his ears.

“You silly Goose.” I said pulling his ears and tail affectionately. Hugging him. “You’re gonna kill me one of these days.”

I knew then that I couldn’t kill myself, that night or any other. Nobody in their right mind would take my stupid dog.

*     *     *

I learned when I went back to work on the following Monday that the person I spoke with at the insurance company was wrong.  Mistaken.  My company’s coverage was considered continuing coverage and so my condition was insured.  I had my surgery and became healthy for the first time in about a decade.

Since the election, and especially since seeing the appointees to healthcare-related positions in the upcoming Trump Administration,  I have been haunted by the memory of the night I nearly ended my own life in a fit of desperation.  And while I think we can all agree that it was the silliest suicide plan ever devised, that misses the entire point.

And that point is that folks who lose their insurance or who are without insurance are often desperate.  And close to the end of their rope.  I certainly was.

How many other Americans have been in that position?  Hundreds?  Thousands?  Millions?  How many think, consider, and/or attempt suicide?  How many will in the future without Obamacare?  Without Medicare?  Without Medicaid?

The New England Journal of Medicine reported the following:

First, many suicidal acts — one third to four fifths of all suicide attempts, according to studies — are impulsive. Among people who made near-lethal suicide attempts, for example, 24% took less than 5 minutes between the decision to kill themselves and the actual attempt, and 70% took less than 1 hour.  (Miller and Hemenway, 2008)  (Emphasis added.)

I am not a traditional candidate for suicide, I don’t have the risk factors.  But I was, literally, at the end of my rope because of a combination of constantly dealing with a difficult disease, being broke because I was young and just starting out, and suddenly losing my insurance.  I would have had a huge financial burden I would never have been able to pay off.  All through the bad luck of bad health.  Simple bad luck.

When I hear the anti-Affordable Care Act folks preaching about how we need to get rid of Obamacare, I want to share the story of my desperation.  Because a flawed system is better than the old system, where pre-existing conditions — the very thing that makes insurance absolutely necessary — will be the very thing that made insurance coverage impossible.  There are problems with Obamacare.  But we need this program or we need a better program.  Going back to the old system is already unthinkable.  And the solutions I’ve seen from the GOP will not keep people like me with treatment options, out of medical bankruptcy, or away from desperate action.

Health insurance for many people makes the difference between life and death.  Literally and figuratively.

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Mike Who?

A public service announcement brought to you by FiftyFourAndAHalf (courtesy of Dailykos.com)

Who is Mike Pence?

I mean besides Donald Trump’s VP candidate who gets almost no coverage in the press.

He’s the guy who decided to defund Planned Parenthood!

 

 

So tonight, when (if) you watch the VP Debate being held here in Virginia, remember that misogyny comes in quieter forms too.  Like from those gentlemen who simply want to make sure that women have lots of babies and no access to healthcare screening for breast and ovarian or for sexually transmitted diseases.

It’s a health issue.

It’s an economic issue.

It’s common sense — keep public funding of organizations who serve the public.

pp

Google Image

Elections Matter.  Vote on November 8.  And not for Pence!

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Scientific studies

A good part of my job is to look at scientific studies and figure out if they represent good science.  You’d think they’d hire an actual scientist to do that, but, really it’s not necessary.  There are a handful of rules good science follows, and then there is a lot of common sense involved.  I can follow rules, and I am bogged down with common sense, so I am fairly good at analyzing a fair percentage of them.  If the studies look at science that is over my head, or if it involves statistics, I give it to somebody else.

It turns out, I’m not the only non-scientist who looks at scientific studies!  I’m not even the only funny non-scientist who does.

On Sunday, John Oliver took a look on Last Week Tonight.

For the entire version, which Word Press won’t let me post because it’s too long, click on this link.

And don’t believe everything you read.  Or hear.

 

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Filed under 'Merica, All The News You Need, Cancer, Drugs, Health, Health and Medicine, Huh?, Humor, Science

Reality Doesn’t Make It Onto the Nightly News — or into State Legislatures

Congressman Luis V. Gutierrez schooled the House Republicans on the Oversight Committee a few weeks ago when they held a hearing on Planned Parenthood.

Naturally, this dose of reality didn’t make it into the news reels.  Pity, because Congressman Gutierrez is correct.

At the Federal level, at least for the near term, any anti-abortion (aka “Pro-Birth”) legislation will be vetoed by President Obama.  It is protected by the U.S. Constitution, as decided in 1973 by the Supreme Court in Roe v. Wade.

Sadly, though, the same is not true of efforts by the States.  Because those legislatures, run in many cases by the GOP, keep enacting laws that step by step make it more difficult for women to get access.

  • Mandatory Ultrasounds
  • Requiring physicians to have admitting privileges at local hospitals
  • Prohibiting abortions after 20 weeks (about the time some of the most severe abnormalities become apparent)
  • Restricting access to “morning after” pills
  • Compulsatory parental consent (including in cases of rape and/or incest)

The list goes on.

Just as bad, are the healthcare rights they want to take away from women, many of which are provided to us by Planned Parenthood.  Mamograms.  Cancer screenings.  Contraception.

So while we can be thankful for Congressman Gutierrez, and know he’s right at the FEDERAL level, there is a whole lot of work to be done to protect women’s rights at the State level.

Elections matter. 

There are some coming up on NOVEMBER 3:

Governor:

  • Kentucky
  • Louisiana
  • Mississippi

State Legislatures:

  • Louisiana
  • Mississippi
  • New Jersey
  • Virginia

Mayor:

Anchorage, AK; Arlington, TX; Charlotte, NC; Colorado Springs, CO;* Columbus, OH; Dallas, TX; Denver, CO; Duluth, MN; Fort Wayne, IN; Fort Worth, TX; Greensboro, NC; Houston, TX; Indianapolis, IN; Jacksonville, FL; Kansas City, MO; Knoxville, TN; Lincoln, NE; Memphis, TN; Montgomery, AL; Nashville, TN; Philadelphia, PA; Phoenix, AZ; Raleigh, NC; San Antonio, TX; San Francisco, CA; South Bend, IN; Tucson, AZ; West Palm Beach, FL; and Wichita, KS

* Mayors races have some interesting consequences, too.  I wrote about the last mayoral election in Colorado Springs in this post.

Special thanks to Melinda, my very extended family member, who shared this video link.  And thanks to Wikipedia for the list of states/cities with elections this November.

27 Comments

October 11, 2015 · 0:00

No Satisfaction — No Sat-is-FAC-tion

When I look at today’s GOP, I just don’t understand why they are so fired up at tearing down stuff that helps people.

I mean look at them. They want to gut programs that have helped millions:

  • Social Security (Happy 80th, BTW!  Here’s to 100 and more!)
  • Medicare
  • Voting Rights
  • Immigration

.

Have you heard the latest?  Donald Trump proclaimed that the 14th Amendment — the one that grants citizenship to anyone born in the United States — is unconstitutional.

That Furball, The Donald, wants to pretend that rights that are in the Constitution are, well, unconstitutional.  And the rest of the clowns are falling all over themselves to agree with him!

Ummmmm, do they even have a clue that “Constitutional” means,well, in the fucking Constitution?

Apparently not.  Because, you see, these folks just can’t get no … <i?they can’t get no.  No no no…</i>

Of course, I found this at The Last of the Milleniums.  Where else?

And you know what?  I’m pretty sure these comedians in the GOP won’t stop until there is nothing left of what has made our country great.

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My Candidate for President — 2016

I have a pretty good track record in choosing Presidents.  Sometimes, I’m way ahead of the game.  I decided in 2004 that I wanted Obama for President.

Obama at the 2004 Democratic Convention

Obama at the 2004 Democratic Convention (Google Image)

Sadly, I didn’t notice him on the ballot for a while.

This time around, I haven’t been able to decide. Hillary?  Bernie?  There are things to recommend each of them.  So what is a good citizen to do?

Well, today I have my answer.  I know who I’m going to vote for. I know who I will work for.  I know who will solve one of the major problems the world faces today.

Please join me in supporting the candidacy of Donald Trump:

Google Image

Google Image

Because Donald Trump stated the following:

Donald Trump says if he gets elected president, he would have to change his hair style because he wouldn’t have time to maintain it, as he would be working his butt off in the White House.…[Emphasis added]

The world will be a far, far better place.

*     *     *

I found this, along with a zillion other brilliant pictures at The Last of the Millenniums.  He’s got a gift for finding the really fun stuff.

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Hey Doc? Do I Need This?

Perhaps I mentioned it a time or two, but I am something of an impulse buyer.  I succumb to all those “buy one, get one free” offers.  The “50% OFF!s,”  and, naturally, every sale.

Huffington Post Picture

Huffington Post Picture.  I just don’t get enough opportunities to use it.

 

The other day, I had to make an appointment for a medical test at a large DC hospital center.  Because I am a patient extraordinaire, I have all my tune ups and oil changes done at a major medical center.  The hospital version of Jiffy Lube.  I like feeling like my surgeons are on the cutting edge, and that my gastroenterologists are qualified to show others just what to put into my orifices.  I do not like amateurs poking about where I can’t see them.

But now?  Modern healthcare is just getting better and better!

Because there are all kinds of deals available.  I can shop for services at my local hospital!  How can you beat that?  You see, the MBAs have taken over healthcare.  So it’s just another consumer good.  Right?

In fact, I learned that I can purchase all kinds of pancreatic treatments!  Really!  Right there at Georgetown!  I can even, if I want, sign up for a pancreatic transplant!

But WAIT!  There’s MORE!

I can get deep brain stimulation!  I’m told while waiting on hold to make my doctor’s appointment, that it can treat (not cure) not just my GI problems, but illnesses, syndromes and conditions I don’t have!  Imagine that!

Yup!  I can treat not just my depression or bipolar symptoms, but my Parkinson’s Disease symptoms, too.  I’m not sure if I have to wait for those to develop first, or if I can just plunge right in and treat em.

Of course, I’m hoping that once my brain has been deeply stimulated,  I will come to understand why the MBAs think that someone with poo problems (and who spends way too much time with doctors and getting other treatments for the condition she is waiting on hold about) might enjoy some additional time in the hospital.  Because we all know just what a hoot those procedures can be.  Not to mention the designer gowns you get to wear.  Ammirite? 

Perhaps I can organize a girls’ retreat with my besties!  Hey girls, this gastric bypass is on me!

I’ve learned that I can have bloodless surgery at Georgetown, too.  I’d hate to make a mess.

The kidney tumors I also don’t have?  You guessed it.  They can be gone in no time.  Still gone.  Or maybe “Gone again” is the accurate description.  How about “Gone with the Wind?” Or is that mixing up body systems?

As soon as the lines open on Monday, I’ll be calling again.

These deals won’t last forever!

 

 

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