Category Archives: File Under This Merry-Go-Round Doesn’t Have a Brass Ring

Cancer in abeyance, a cold and broken hallelujah

breast cancer cure

“I’ve heard there was a secret chord, that David played and it pleased the Lord. But you don’t really care for music do you?

Last week I got the news every cancer patient wants to hear: Scans show No Evidence of Disease. My cancer is in abeyance.

“It goes like this, the forth, the fifth, the minor fall and the major lift. The baffled king composing Hallelujah.”

Do I feel a sense of relief? Do I want to scream Hallelujah? Absolutely.

“Your faith was strong but you needed proof. You saw her bathing on the roof, her beauty and the moonlight overthrew you.”

Do I want to believe there was something I did right to make this happen? Yes, again. But I also know better.

“She tied you to a kitchen chair, she broke your throne and cut your hair, and from your lips she drew the hallelujah.”

Yes, cancer has been that evil mistress who has thrown me to the ground, made me say uncle, then laughed at me mockingly as I struggled to get back up. Cut my hair? Hell, she sheared it right down to the scalp. And when chemo was done and it started to grow back, yes, she drew from my lips a hallelujah.

“Baby, I have been here before. I know this room. I’ve walked this floor. I used to live alone before I knew you.”

Even with cancer in abeyance, I no longer live alone. She lurks like a shadow within me, rogue cells slithering undetected in my blood, my bones, my organs. As I get back to my life, I struggle with this acceptance. That it’s not over. That it will never be really over. Not until there’s a cure.

“I’ve seen your flag on the marble arch. [Cancer] is not a victory march. It’s a cold and it’s a broken hallelujah.”

It will return. I try to put that out of my head. I try to celebrate this moment, this win. I celebrate with a broken hallelujah.

“There was a time you let me know what’s real and going on below. But now you never show it to me do you? And I remember when I moved in you. The holy dark was moving to and every breath we drew was hallelujah”

A time when I could trust my body, the idea that if I was feeling healthy, I was healthy. That if everything seemed OK, it was.

“Maybe there’s a God above and all I ever learned from love was how to shoot at someone who outdrew you.”

There was a time when everything was clear cut. When I aimed at a target and hit a bullseye, I was done. I’d made my mark and could move on.

“It’s not a cry you can hear at night. It’s not somebody who’s seen the light. It’s a cold and broken hallelujah”

I can not explain what it’s like to live a life turned-upside down, to fight to bask in the light of good news in this moment, despite the darkness that certainly lies ahead. Yes, it’s a cold and broken hallelujah.

All the same, it is hallelujah, hallelujah, hallelujah.

 – Quotes are lyrics to”Hallelujah” by Leonard Cohen.

 

 

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How one diagnosis can wipe out a lifetime of good choices

medical debtOne of the frustrating things about having a severe or life-threatening illness is that it can in one fell swoop annihilate all the goodwill you’ve earned from a lifetime of good decision making.

And it’s not just your health that’s impacted. It’s finances as well, as I’ve been writing about. One place it can have a tremendous impact is on your credit report.

Credit is a rather fickle thing. I opted to destroy mine by living in France for a year, back when computers weren’t so prolific and it would take overseas bills months to show up on my credit statement. After that, I laid low, spending only what I could afford and keeping only one credit card open. After a few years,  I decided to apply for a car loan, only to find that my credit had repaired itself over time. A few years after that, I found myself nearing 800 – which is an A+ rating – when I went to apply for a mortgage.

And then, something strange happened. Several bills went astray, leading to late payment notifications on my credit report, which penalized me harshly. When my score fell dramatically, I started to pay close attention to how my credit score was calculated and what I could do to improve it. I wrote letters to creditors, then the credit reporting agencies. I was able to get a few of the bad marks removed, but not all of them. Again, time was the great healer.

During that time, Congress passed the HIPAA privacy act which I learned prevented creditors from reporting medical debt, as it violated privacy laws. About that time, some obscure bill showed up on my credit report (which I don’t think was mine) claiming I owed a doctor $35. I cited the act in a letter to the credit reporting agency and had it removed.

Despite that little known loophole, a recent study by the Consumer Financial Protection Bureau found that medical expenses comprise more than half of debt on credit reports and roughly 21 million people with medical debt (which account for nearly half) showed no other signs of financial distress – meaning that up until being diagnosed with something, they’d been making really good choices.

And yet, despite those good choices, in 2013, nearly 2 million people filed for bankruptcy because of medical debt. It was the No. 1 reason for filing, despite many of them having health insurance, according to NerdWallet Health.

The CFPB found that confusing medical bills caused the biggest headache for consumers, leading to credit reporting problems. Specifically, the authors said that it often is difficult to tell from insurance and hospital statements how much is owed, the payment deadlines, and which organization to pay.

Tell me about it. I get a bill from the hospital, another from a doctor that shows she’s discounting a portion of the hospital bill and none of the figures of either bill seem to correspond to what shows up on my health insurance statement. Nor do the amounts owed or paid.

My friend Joan Redding of the Credit Counseling Center – whom I’ll talk about tomorrow – offers some good advice, including negotiating with the hospital before it goes to a collections company, which is where credit problems begin.

That’s where I’m at, at the moment, working with my medical providers to find a solution and doing my best to stay away from tapping my retirement funds.

And I’m hoping a pattern of good decisions will pay off in the end.

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You Can’t Go Home Again

The Me I New

           THE ME I ONCE WAS

As hard as I try, I can’t go back to who I was. There’s nothing like a bad haircut to remind me of that.

I’ve had short hair since chemo ended, now four years ago. My body rebelled after being doused for months in that chemical wash. My nails and hair particularly made their dissatisfaction known, splitting and breaking and refusing to grow. I tried nail hardener and special shampoos, but the only thing that helped was time. My nails at least have started to grow again and have stopped splitting. My hair, though, remains fine and limp and every so often I panic, sure I have a bald spot. It’s no longer the lush locks I had.

I gave up bangs I’d worn since kindergarten for a side-swept pixie cut when my hair finally started to grow back after chemo.  It looked cute and was a departure from the curly, salt and pepper mane that replaced the long, golden hair I’d lost.

Over time, I let it grow in a bit thicker, going for the Robin Wright look in House of Cards. It suited me, even though I never quite felt I recognized the woman looking back from the mirror.

For the first half of this year, I let my hair grow.  I found a haircut that looked something like my old look, albeit a shorter version. And it had the bangs I’d forsaken. I was sure it would be the perfect cut for growing it long again.

THE ME I THOUGHT I COULD BECOME

         THE ME I THOUGHT                        I COULD BECOME

So today, I went to my hair stylist – who rescued my wigs from over-washing-frizz-out as I cried and talked me in off the ledge of vulnerability during my baldness – and showed her the picture of the new look I wanted.  She sized it up, told me I’d need to go a bit shorter in the back, but agreed it could be done.

Except it couldn’t. My bangs no longer sit right on my forehead and the shag layers are flat, making my hair look more like a helmet than tresses. I came home, threw water on it and parted it back on the side, giving it the pixie look I started with four years ago.

Back then, it made me happy. Today, it makes me feel stuck, like the movie Groundhog Day. Every time I think I’m ready to move forward, life takes me back to where I was to start all over again. Whether it’s a cancer recurrence or a starting a new drug treatment or a bad haircut. It’s like a merry-go-round I can’t get off of and there’s no brass ring to grab.

So here I am, back to being a woman I don’t recognize, but no longer having a meltdown over it. Sometimes you walk through a time warp and there’s just no going back. I’m living in such a time.

 

 

 

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