Shine

Yesterday as I was driving my son to his high school, traffic reports advised that a close-by road was closed because of an accident. I avoided it on my way in but had to drive past on my way to work. News crews were everywhere. Hm, I thought. Must be a big accident.

I googled once I got to work and read this:

Earlier this morning, the driver’s mother called 911, according to a recording of the call.

She said he left their home in White Oak in the middle of the night. He has expressed suicidal thoughts and has been depressed, she told a dispatcher.

A tracking device inside her son’s green, 1998 Toyota Avalon showed the vehicle was stopped where the highway ends just before Montgomery Road, she said.

It also indicated the vehicle was going 112 mph, she told the dispatcher.

The mother said she feared her son’s vehicle had crashed, and he was not picking up his phone.

Out of the ordinary. As both my children are in high school, I felt queasy.

Sure enough, later in day I read that the driver was a senior at a local high school and had died. Local outlets report that the crash is under investigation – no references to the early morning report about the mother’s 911 call.

If you find yourself thinking, “Out of respect for the family” or “Now’s not the time” I ask you two questions:

  • Is suicide the only cause of death that is withheld out of respect for the family?
  • If not now, when?

I’ve argued here before that sticking mental illness into dark, shameful corner respects no one. We have to shine a light on the issue of mental illness and depression before we can begin to understand it.

Here is a list of resources I’ve posted before.

Most important:

Crazymaker

A few years ago, I read a book called The Artist’s Way by Julia Cameron. Her words helped me frame out some of my own nebulous ideas, none more so than her concept of Crazymakers. The name pretty much says it all – people who bring chaos into your life. As much as I have found crazymakers and crazymaking appealing in the past, I’ve leaned that life alone can leave you wondering which way is up. I need people I can count on. Why spend time with people who can turn a calm lake into a wave pool; choppy waters into a tsunami?

As the saying goes, the personal is the political.

There is something very wrong with our country.

I noticed an uptick in collective madness when Obama was elected. People still claim he is a gay Kenyan Muslim who hates the United States. In 2008, I called it the Death Rattle, firmly believing that ugly ideas like racism, classism, and this insipid American idea that we are products of our own bootstraps were expressing their final gasp.

I think I might have been premature. Now I think this is a two men out in the bottom of the 9th situation. When you’re down and nearly out, you take risks you might not otherwise take. As in, Go Big or Go Home.

Hence, Donald Trump.

I’m not going to try to make sense of yesterday’s crazy crazymaking because that’s how crazymakers suck you in. But here is some work others have done.

Smart people believe that Trump’s slim margin of victory in three swing states can be attributed to Comey’s actions during the election season. Now, for these same actions that Campaigning Trump and Senator Sessions used to praise, President Trump has fired Comey, in a terribly unprofessional way. Could it be that he’s trying to shut down the FBI investigation into Russian election tampering? If not, why fire him now for actions taken almost a year ago, when Comey is knee-deep in this work?

And then, in perfect crazymaking form, Trump tries to twist it around this morning, saying that HRC supporters should be happy since they didn’t like how he handled the Clinton email situation anyway.

Mr. President, it is absolutely possible for a person to believe that Comey should have been fired AND question your timing and method. Lots of people reject the “ends justify the means” philosophy of ethics.

Adding to the crazy tornado is the way the alternate universe spins this – as a punishment for NOT prosecuting HRC, even though the memo says something entirely different. In fact, this firing, we are supposed to believe, is about the mistreatment of HRC.

Crazymaking might work temporarily to keep North Korea on it’s best behavior but it also directly contradicts the notion that in the United States, laws matter more than any single person.

I think we’re in the wave pool, heading straight into the tsunami. I told my son today that I feel we’re at some sort of turning point. In the muck of it all it’s impossible to know which way this is heading but I have a pit in my stomach.

Will our elected leaders have the guts to put the long-term health of the country before the possibility of short-term gains by the party?

I’m afraid they don’t do anything unless their jobs are at stake. That sort of pressure is up to me and you.

Pre-Existing

Where you live should not decide
Whether you live or whether you die
~ U2

Following up on a comment Cancer Curmudgeon made on my post last week, I want to be clear: I am in no way suggesting civility = roll over and die. I do believe some methods are more effective than others but that’s purely a matter for the individual to decide.

One fight that’s near and dear to me and to lots of my fellow bloggers is access to health care.

I get my health insurance through my husband’s employer, for which I am quite grateful. My cancer diagnosis coincided with the Great Recession and along with all the other reasons I had to be scared, the possibility that he might lose his job definitely qualified for the “stare at the bedroom ceiling at 3 AM” list.

I knew I was virtually uninsurable and that cancer treatments would financially ruin us. My chemotherapy treatments cost around $17,000 each, radiation was $500 per zap, I don’t even remember what my two operations cost.

Heck, even with insurance it’s expensive. Our annual out of pocket maximum is almost $10,000. Here’s the thing – I’m incredibly grateful for what I have. Not only has my family been able to access top-notch care, but I have never had to choose between health care and life’s other necessities like food.

Still, I breathed a sigh of relief in 2010 when the ACA passed and I knew my worst-case scenario of ruinous uninsurability was eliminated.

A short sigh.

Now we’ve got talk of repealing the ACA and reintroducing high risk pools. If you think that sounds like a good idea, please read this article from the Kaiser Family Foundation about pre-ACA high risk pools.

For starters, my state didn’t even have one. The offerings of those that did often came with premiums as high as 200% of the market rate, capped lifetime coverage at $1 million, and excluded pre-existing condition coverage for as long as 12 months.

Better than nothing?

Maybe.

I suspect that in the deep, dusty recesses of our collective mind, there lies a thought that maybe I should pay more because I didn’t always behave responsibly. Sure, I may have engaged in some behaviors that increased my risk for developing cancer during my misspent youth.

Here’s the thing though – you probably did too. Why one person develops cancer and another doesn’t is, as of today, unknown. So the next time you hear someone has lung cancer rather than asking if she smoked, get down on your hands and knees and thank whomever you thank that it wasn’t you.

Not convinced? Look at my kids. They both have Celiac Disease, as we discovered earlier this year. It’s a serious and not well understood auto immune disorder that has no cure. There’s a genetic component to it but some people carry the mutation without developing the disease for reasons also unknown. When a person with Celiac eats gluten (a structural protein found in wheat, rye, and barley), part of the immune system kicks into overdrive and attacks the small intestine. The small intestine stops functioning normally, interfering with the absorption of nutrients like iron. It’s a permanent, life-long disorder and the only treatment is to never ingest gluten.

In other words, a pre-existing condition.

Still don’t care? Take 15 minutes to watch this incredibly moving monologue from Jimmy Kimmel. Stick with it through the end. Bravo to Kimmel for putting this out there.

Remember — when we speak in esoteric terms of freedom and the supremacy of the individual, real people on the ground are suffering. You’ll never make this country great by reserving health care only for those who can afford it.

The Limits of Civility

As a native Midwesterner, I believe in the importance of civility. It’s one reason our current federal government poopshow drives me so crazy. I think people who allow themselves to be pulled into incivility are both coming from and heading toward a dark place. It’s a symptom of deeper problems – the slippery slope of dehumanization that occurs when we assign people to broad categories defined by one-dimensional traits and the dangerous belief that a person who disagrees with you is your enemy. It’s born of the habit of thinking the very worst of people and grows by finding ways to reinforce those twisted beliefs, discarding all evidence to the contrary.

It’s not just them, of course. In fact it’s not them at all. It’s us – the conversations we engage in, the ways we interact online, how we choose to spend our time.

I live in a small city just outside of Cincinnati that sprang up as a river and train stop town, became a resort area city dwellers to escape hot polluted summers, remained a sleepy rural outpost for a long time, and recently transformed into an in-demand place to raise a family. A lot of the historic charm is still here and the former rail lines have been converted into a fairly well-known bike trail. Even here, yes, in a town called Loveland, unseemly behavior at city hall meetings have hit the news. A finance committee member is embarrassed to live in our city and I think lots of us agree with him.

I cringe and wonder why these people can’t behave themselves. Not only is it uncomfortable, it’s counterproductive. Invariably, the focus becomes the bad behavior not what’s going on behind the curtain. Style over substance. Reality TV star over policy wonk. And, yes, I do realize that this might be the strategy. That’s another topic entirely.

Lately I’ve wondered if my preference for politeness is really all it’s cracked up to be or if I’m looking for another empty suit. Am I craving a thick enough veneer to keep me comfortable or something more meaningful?

If my Midwestern sensibilities are too quaint for you, I’ll up the gravitas ante with one of my favorite lines from Audre Lorde.

 

We won’t change the system by using the same bullying tactics that got us here in the first place. True, meaningful change comes not just from the what we produce, but in the how we got there. It’s no good to live in a town that looks like Mayberry if everything changes when the doors close and everyone has had a couple of cocktails.

I do believe that the golden rule matters. It sets the tone and signals a healthy environment. But it can only take you so far. It only really matters if it’s backed up by a commitment to respect – a basic belief in the dignity of everyone. Because if you don’t believe that we are all worthy, politeness is just as fake as Mayberry’s Hollywood set.

You can’t hide character either.

The good news is that you can build it. The first step is the hardest and loneliest work of all – an honest assessment of what’s behind your veneer.

Do You Offer Multiple Child Discounts?

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.

No longer allowed in my house.

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.

Yes, comparing it to that bad mother in The Sixth Sense would be overly-dramatic, but I don’t like it anyway.

The bread has about 14 slices per loaf. You can buy a case of 8 loaves at Amazon for $48.22. I used to buy bread for about $1.99 per loaf ~ One loaf per week for two kids. The same meals will cost about 5X more now.

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.

A Navigation

The rich stay healthy
While the sick stay poor

U2, God, Part II

Who, me?

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).

Good villi/Bad villi

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.

Believing Shannon

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.

This one is different.

You can read the official story here. This is mine. 

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?”

Crap.

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.

I hope she believed me too.