Last week’s post discussed the high price of health, using my 16-year-old daughter’s recent diagnosis with Celiac Disease as an example.
Her doctors recommended all first degree relatives have a simple screening blood test to measure the level of antibodies that do the small intestine damage. Since my last post, screening showed my 15-year-old son has it too. In fact, his number is high enough that there is really no doubt that he has it.
However, the “gold standard” of Celiac Diagnoses in the USA is the endoscopy and biopsy. Elsewhere in the world, his numbers would exempt him from that step. I don’t really know enough of the science to understand why, but I can see the benefit of scoping for the extent of damage.
Apart from the expense of this procedure, the worst part as a mother is that the accuracy of this test depends on his continued digestion of gluten. Since we are not Children’s Hospital’s only patients, we are put into the scheduling system and have to await our turn. While we wait, I have to feed him food that’s harming him.
Speaking of expense, have you ever priced gluten-free food? Thanks to the trendiness of the gluten-free diet, there are a lot of good options but holy cow. I bought a large loaf of bread (family sized) for $9 last week.
So if you’re looking for me, I’ll be over here learning how to make my own gluten free bread, scrubbing all visible and invisible poison crumbs from my kitchen, and monitoring my bank accounts.
Again, and I can’t say this enough, I know we’re the lucky ones. We can afford the insurance necessary to get this done, we have access to one of the best pediatric gastrointestinal teams in the country, we had the confidence to pursue this for our kids. And while it won’t be easy, we can afford the coinsurance and the $9 loaves of bread.
When I first got health insurance in my early 20s, I didn’t think about it much. There were several plans to choose from and I picked the cheap one with a certain cartoon dog.
That’s the privilege of health.
While I was stashing new cards in my wallet once a year, systems were becoming infinitely more complex: my body, the health industry, the number of people for whom I was responsible.
In 2008 I was shocked to learn that each of my six chemotherapy sessions cost over $17,000. Each of my 20+ radiation therapies cost $500. Add in the remaining year of Herceptin infusions, a couple of hospital stays, a double mastectomy and the costs skyrocket.
Anyone who’s ever read one of those Explanation of Benefits (EOB) from an insurance company knows there is a little hocus pocus going on here. There’s the sticker price ($17,000 per treatment, for example) and then there’s the negotiated rate – what the doctor has agreed to accept from the insurance company. Then you have a contract with your insurance company – they pay part and you pay part.
I have forgotten the exact total, but I know my year of treatment exceeded half a million dollars in negotiated rate dollars. I had to pay about 10% of that. A significant chunk, no doubt, but I figured it out and came out a whole lot more humble about health insurance.
A couple of years went by without much incident and I got a little lazy again about keeping up with changes.
In last month I’ve gotten intimately reacquainted with the process. This time it’s my 16-year-old daughter who went through a diagnostic process for Celiac Disease (CD).
First a few words about CD. Because current fad diets often include a gluten-free component, CD is widely misunderstood. It’s not an allergy or a sensitivity, it’s an auto-immune disorder that requires a genetic mutation, some (yet unknown) environmental trigger or triggers, and the ingestion of wheat, rye, or barley. If you have CD, eating gluten containing products causes a certain antibody to go nuts and attack the small intestine. The small intestine has little fingers (villi) that wave around and absorb nutrients. In CD, those villi become flat and stop doing their job, particularly in the top of the small intestine where iron and vitamin D are absorbed. There’s no cure for CD, no medicines to treat it. For most people, the elimination of wheat, rye, and barley will allow the small intestine to heal over the course of about a year. The risk of CD is long-term – without dietary compliance there are serious, even fatal consequences.
Ok, back to insurance.
There is a protocol for diagnosing CD. It starts with a couple of blood screening tests to check for the levels of those antibodies. If those tests indicate CD, you need an endoscopy and biopsy. Under anesthesia, they insert a long camera down the throat, through the stomach, and into the small intestine. The gastrointestinal doctor (GI) looks for the flattened villi and takes several small samples to send off to the lab to check for CD damage. If that comes back positive, you have a diagnosis and have to eliminate all gluten from your diet forever.
My daughter’s diagnostic cycle took about 4 weeks. Here’s a rundown of the medical expenses. Sticker prices.
Doc visit for blood test: $290
Lab Costs for blood test: $469.27
Appointment with Gastrointestinal Doctor at Children’s Hospital: $590.32
Outpatient Operating Room Services: $6,808.06
Charge for Doc who performed scope/biopsy: $1,592.28.
Lab costs for biopsy: Dunno – haven’t gotten the EOB yet.
Costs for follow-up with GI, more lab tests to check blood counts, and meeting with dietitian: Dunno – that was yesterday so we haven’t gotten the EOB yet.
Our current insurance is “consumer-driven healthcare.” We pay a certain deductible before the insurance kicks in. Some years we don’t even hit that deductible. This year we already have. Of that deductible, the company reimburses part and we can save for part pre-tax. Of course the amount you have pretax is determined the year before, before you know what the year will hold for your family health-wise. The rest you pay like any other bill.
Once you meet the deductible, the insurance kicks in, generally 80% of services are covered until you hit the out-of-pocket maximum. When you file your taxes, you can deduct any medical expenses that exceed 10% of your adjusted gross income.
Our particular plan automatically reimburses us for the portion of our deductible the company kicks in or we have saved until we run through all that money. I pay the doctors when the bills come in.
I hope you haven’t fallen asleep yet.
Here’s the thing — I’M NOT COMPLAINING.
In fact, I feel stupid lucky that we were able to figure out my girl has this relatively rare disease, that the damage can be reversed, that I have both the time and brain juice to advocate and keep track of the financials, that my family can afford the high price of health care (and gluten-free food – YOW$A).
Undoubtedly, a lot of moving parts had to work in harmony for us to get here.
There are people who don’t have the support, the resources, the access to information, access to a doctor, the confidence to pursue a rare-ish diagnosis, and the money to pay the bills. Is our response to them – Oh well, better luck next time??
They deserve good health just as much as my family does. These are the people who need our help.
Cancer is pretty much all downside, delivering devastating blows to the mind-body-spirit trifecta, but the far and away worst damage comes when friends die. I’ve lost people diagnosed before me, after me, those younger and older than me, people who sat with me in the treatment suite and those I never met face to face. I’ve cried, I’ve raged, I’ve shaken my first at the empty sky.
Shannon’s dad and my dad worked together at the Cincinnati Enquirer. They were close friends, Shannon and I were the same age so I heard about her through most of my childhood. We’d spent some time together as teenagers in the 1980s but our connection remained once removed – we were the daughters of good friends with big personalities.
My father died in 1992 when I was in my 20s, I met my future husband shortly after and we created a family who only knew of younger days through the stories I chose to share. There’s a freedom that comes with escaping the full weight of the past but also an unmoored feeling of belonging nowhere.
In the early 2000s, I enrolled my preschool-aged daughter in Sunday School at my parish. One day at pick-up, a smiling face came up to me and said, “Do you remember me?”
I suck at that game and always end up feeling like a chump. Almost always.
This face I knew.
Shannon had been looking for me because she’d seen my daughter weeks before and knew that girl had to be my daughter.
That’s ninja-level recognition skills.
Our oldest kids were the same age and started school together in the same first grade classroom. We got to know each other as adults and parents but our shared history felt like family to me. Like those fading roots.
The summer before our kids started second grade she called me. They’d found cancer in a Fallopian Tube. No worries, she told me. This was a speed bump. Docs gave her an 87% survival rate and she was going to have a little chemotherapy to make sure.
I knew zilcho about cancer then. But 87%, I thought. That’s a B and she says she’s going to be fine. So I believed her and by wintertime she hosted a jewelry making party to thank everyone for their support. Her hair was growing back; she was all smiles and proclaiming life was good.
I believed her.
The summer before third grade started I called her. This time I had the cancer and I wasn’t nearly as sunny. I got a 67% survival rate diagnosis. That’s an F. But she told me not to worry – those numbers include all of the old, fat, and unhealthy people too. It was one of my first laughs at cancer, but her husband had been transferred to Houston. They were going to move before I even had my first treatment.
Before they left, she came over to offer herself as proof to my children. The hair grows back, she said. Look at me, she said, I’m fine. Your mom will be fine too.
They believed her. I did too.
Things weren’t always so fine for Shannon in Houston. What they’d found in Cincinnati was actually ovarian cancer, a nasty and persistent disease. She learned she carried the pernicious BRCA mutation. The ovarian cancer returned, spread, and eventually outsmarted all conventional and clinical trial medications. She engaged hospice this January and died on Valentine’s Day, nine years after the original diagnosis.
I don’t have words to elucidate the stark facts. I know there is immeasurable pain today in her close-knit family. Her sister, her parents, her niece, her nephew, and of course her children.
But she told me before she died that she was at peace.
I believe her.
She hoped her final days would be peaceful ones too. I told her I was sure they would be.
“It’s time to put aside our differences and come together as a nation,” say people in power.
Translation: Sit down and behave. Don’t give us any trouble.
Nah, nah, nah. While my hopes were crushed in November, my memory wasn’t magically erased. I remember how y’all acted from 2008 until November 7, 2016. I remember the bloomers and tri-cornered hats. I remember all the names the first family was called. The now-POTUS was the face of the birther movement. ‘Nuff said.
“The Democrats haven’t learned the lesson of the election,” say the pundits and gloaters.
Nay! We learned. Our neighbors either endorsed Trump’s bluster and bravado or didn’t think it was significant enough to disqualify him. Whether a person voted for him because of his outrageousness or despite it is a distinction without a difference.
I used to believe that we all wanted the same thing, we just believed there were different ways to go about it. I’m not so sure anymore. I suppose if you dig deep enough, the common urge toward happiness is there, but move beyond that very base level and it seems I’ve been wasting my time. I’m afraid I’ve done little more than soothe myself by clinging to the belief that we share the same core values.
Another lesson learned? America, which markets itself as a democracy, actually has a system that can put the minority party in power. Folks find that unsettling. There’s nothing childish or spoiled bratty about it. It’s an affront to our learned sense of what this country means.
When toddlers are first becoming socialized, it’s typical to see them playing side by side instead of engaging each other. They’re doing their own thing in the same vicinity. As they mature they start playing together – learning to give and take, to win and lose, to negotiate rules.
These cries to “get along” seem to be cries for thicker coats of veneer. We don’t want harmony, we want the appearance of harmony. People are demanding politeness. One lesson I learned during the Obama administration is that politeness has its limits.
While we go about pretending everything is alright, resentments burrow and grow in the fetid darkness of hushed silence and rot a person from the inside out like a blight. We’re just placing a thicker, penetration-proof coating on our comfortable bubbles. Thick bubbles let us take the easy way out – creating two-dimensional caricatures out of people who disagree with us and demonizing the dreaded other.
We can continue to live like toddlers play – side by side. Or we can begin the real work of healing. It’s is risky and hard and scary and guaranteed to change you.
If you want to make this country great, take the risk to change yourself. If you want the country to stay on its current path stay in your poo-flinging corner. Call people who disagree names that strip them of their humanity, insist that they sit down and shut up, blame them when things don’t go well.
If you’re ready to be the change, here’s a familiar place to start. It’s out of my usual wheelhouse, but it’s a prayer I remember well from parochial school youth. Whether you believe in the same dogma of the writer or not, I challenge you to stay open to the deeper, unifying truth.
Peace Prayer of Saint Francis
Lord, make me an instrument of your peace:
where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy.
O divine Master, grant that I may not so much seek
to be consoled as to console,
to be understood as to understand,
to be loved as to love.
For it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying that we are born to eternal life.
My grandparents on my father’s side were Irish immigrants. I don’t remember them talking about why they left but I know people don’t just pack up and leave everything they know if their life is hunky dory.
Thanks to the magic of the internet and many hours of work, I have located some of my grandfather’s immigration records. All this comes from the Liberty Ellis Foundation.
He departed from Queenstown (now Cobh) on April 9, 1911 and arrived at Ellis Island on April 16th. The ship’s manifest says he’s 20 years old, but I don’t think that’s accurate. Other records show he was born in 1893 and I know his birthday was August 11th, so he was 17. He sailed on the Laurentic, a ship owned by the White Star Line.
Here is the ship’s manifest with my notes.
Page 1: The headers
Page 2: Passenger 24 – William Forde of Tuam, Ireland. Father’s name is William, final destination is Cincinnatti (sic). It looks like he was traveling with Passenger 23, John Monahan, also from Tuam and also going to Cincinnati. I’ve confirmed that they were neighbors in an older Irish census. By the way, one of the most surprising parts of my research is that our last name was spelled Forde. By the time my dad was born in 1926, it was Ford and I have no idea why.
Page 4: The second set of headers. Please note the top line. He was a steerage passenger. You’ve seen Titanic, right? They were the people crammed into rooms in between the regular decks. They did most of the dying when the Titanic sank in 1912. I have read that the White Star Line tried to clean up these third class accommodations to attract immigrants and have no first hand accounts of the conditions on the Laurentic. But they were, by definition, not first class passengers.
Page 5: He paid for the ticket himself. He had $15 with him. His aunt, Mrs. W.A. Herne (her name was actually Herron) lived at 451 E 5th Street in Cincinnati. He was 5’8″ (also a stretch, I think) and claimed to be neither a polygamist nor an anarchist. The log indicates he was not crippled and was in good physical and mental health. Apparently that was the extreme vetting of the day.
I think remembering this matters, even if my grandparents wanted to put it behind them. My best guess is that they left Ireland in search of opportunity, prosperity, and the chance to build a better life. Living with the recent memory of the Irish genocide probably didn’t help them want to stick around either.
In America, the Irish were discriminated against and caricatured as shiftless, roving gangs of violent drunks. Catholics were distrusted because of their mysterious and misunderstood allegiance to a foreign religious leader. An entire political party formed out of the fear.
In 2017, that sounds ridiculous, just as our current Muslim hysteria will sound to the future.
Nativism has always been with us; we bury its history because of shame and our silence emboldens it for a new generation.
A sweeping tome such as The Gene deserves more than one post.
One of the most enlightening parts of the book is Mukherjee’s way of defining illness – not as an objective measurement but as a mismatch between a person and his or her environment. Something becomes an illness when it prevents the patient from reaching his or her desired goals. As usual, context matters.
ADHD, he cites as an example, would not have hindered our hunter/gatherer forbears. It might have even helped them navigate risky, hostile, and unpredictable environments. But today, we expect our children to sit still for long stretches of time in the classroom. Since ADHD can be disruptive to our current systems, we have come up with ways to diagnose and treat it.
I think the biggest elephant in the room about our increasing genetic knowledge is the answer to a deceptively simple question – “Ok. Now what?” Akin to the early detection conundrum in breast cancer, precise test results aren’t a solution. Although we detect cancers early, we don’t know which cancers are indolent and which will become deadly. Most importantly, if the cancer does metastasize, we can’t cure it. Likewise with the BRCA testing – we can tell a person of the increased likelihood of breast or ovarian cancer but we can’t say what kind, how lethal, or when it will happen. Indeed, there is a chance that the person carrying the mutation will never develop cancer. Risk reduction for these people often includes the complete removal of healthy breasts and ovaries. How valuable is the early detection if the Ok. Now what? options are limited?
I have a friend whose son has Down Syndrome, meaning he carries an extra copy of a chromosome. As of today, this is immutable. Prenatal tests can diagnose it but cannot predict what the eventual child’s life would be like or what his/her capabilities will be. If a pregnant woman finds out her fetus will be born with Down Syndrome her only remedy is abortion.
My friend is the fiercest Mama Bear I know and her son is thriving in a traditional school setting. It hasn’t always been easy but spending time with this special family is bound to make you a better person. Over the years I’ve asked myself why anyone would consider this boy to be ill or disabled. It seems just as reasonable to think that Down Syndrome might be a variation, like blue eyes, and not something that needs to be fixed or eliminated.
(NOTE WELL – I am not here to debate morality. I believe in a woman’s absolute right to make her own decisions. My bubble doesn’t include having walked in those shoes so I don’t pass judgment.)
The ancient Greeks passed along a multitude of valuable ideas and systems that shape our society such as a groundbreaking model of self-rule, the Olympics, and didacticism. Unfortunately, they also saddled us with this notion that there are objectively perfect forms. Of course if we believe perfection is a single, achievable outcome that exists out there somewhere, we’re going to chase it like Gatsby and his green light.
As discussed before, that can lead to downright evil outcomes like the Holocaust. Our ideas of what perfect means change over time, limited by both cultural norms and our inability to recognize the shortcomings of our own bubbles. Plato, the guy who talked about the perfectibility of forms, considered tallness to be perfect. Another philosopher in another society could come to the opposite conclusion. Since perfection is a matter of taste rather than a measurable objective, it is subject to all sorts of winds of change.
Given the unacknowledged limitations of our own bubble, it seems entirely possible to me that editing out genetic imperfections will bring unintended consequences. What else might we eliminate, either because we don’t full understand how all our genes work together or we ignore the full implications of so-called flaws? There are myriad theories about the imperfection of our ancestral geniuses. Michelangelo displayed symptoms of autism. Hemingway was bipolar. Einstein might have been dyslexic. Google it. There are plenty more.
I don’t mean to diminish real suffering. After all, Hemingway committed suicide at 61.
Before we start messing with traits we decide are undesirable, we need to understand the implications. Could we have had Hemingway’s brilliant writing without his mental illness or did his mental illness prevent him from achieving more?
Until we know the answer to that, we need to proceed with caution.
Eight years ago I was ecstatic that our nation hit a milestone with the inauguration of the first African-American president. It seemed we had turned a corner both in racial symbolism and in core values. All seemed possible. A young president with a beautiful family close to my own children’s ages who campaigned on hope, on light overcoming darkness, on further perfecting our union was just what the doctor ordered.
Speaking of doctors, the 2009 inauguration happened a day before my mastectomy, just a couple of weeks after I finished my 6th and final chemo on Christmas Eve. I crassly commented (under the influence of morphine) that I’d gotten rid of three boobs in 24 hours. No doubt, the rising tide of optimism lifted my boat during those dark, bald days.
For eight years, the White House was full of grace, intelligence, and integrity. Now we’ve been whipsawed back to darkness. An unsettling uncertainty lies ahead but I assure you that dawn always comes.
I’ve lived that Truth.
I bet you have too.
I’m not planning to watch the inauguration today. I respect that Mr. Trump is (almost) our president and will do my best not to call him names if I find myself under the influence of morphine. The peaceful transition of power has never been more impressive, in my lifetime at least, because for the first time I had doubt that it would happen.
And I do hope that he is successful in bringing America together, in fixing the healthcare system, and in enabling the disenfranchised.
An America greater than the one we celebrated on 1/20/09 is hard to imagine. But we created that and we can create more. As we plow forward as one nation, don’t forget the poem Elizabeth Alexander’s read into the sharp sparkle of winter air.
Praise Song for the Day – Elizabeth Alexander
Each day we go about our business,
walking past each other, catching each other’s
eyes or not, about to speak or speaking.
All about us is noise. All about us is
noise and bramble, thorn and din, each
one of our ancestors on our tongues.
Someone is stitching up a hem, darning
a hole in a uniform, patching a tire,
repairing the things in need of repair.
Someone is trying to make music somewhere,
with a pair of wooden spoons on an oil drum,
with cello, boom box, harmonica, voice.
A woman and her son wait for the bus.
A farmer considers the changing sky.
A teacher says, Take out your pencils. Begin.
We encounter each other in words, words
spiny or smooth, whispered or declaimed,
words to consider, reconsider.
We cross dirt roads and highways that mark
the will of some one and then others, who said
I need to see what’s on the other side.
I know there’s something better down the road.
We need to find a place where we are safe.
We walk into that which we cannot yet see.
Say it plain: that many have died for this day.
Sing the names of the dead who brought us here,
who laid the train tracks, raised the bridges,
picked the cotton and the lettuce, built
brick by brick the glittering edifices
they would then keep clean and work inside of.
Praise song for struggle, praise song for the day.
Praise song for every hand-lettered sign,
the figuring-it-out at kitchen tables.
Some live by love thy neighbor as thyself,
others by first do no harm or take no more
than you need. What if the mightiest word is love?
Love beyond marital, filial, national,
love that casts a widening pool of light,
love with no need to pre-empt grievance.
In today’s sharp sparkle, this winter air,
any thing can be made, any sentence begun.
On the brink, on the brim, on the cusp,