cancer

I had my annual mammogram this last Tuesday – remembering how last year’s formerly routine event wound up, to say I was a little nervous is a vast understatement.

Here’s the news: I’m now officially a survivor.

Looking back at the last 372 days, I have to say it’s been quite a ride. So many people have helped me, have lifted me up, have kept me from feeling that terrible aloneness that’s part of fighting a life-threatening disease.

‘Thank you’ sounds inadequate, but it comes from the deepest and most tender part of my heart.

I will finish the first draft of “Cancer for Christmas” by New Year’s Day. Then it’s on to finding an agent, a publisher, or – best of all possible worlds – both. I’ll be reaching out to Save the Tatas and the Susan G. Komen Foundation, offering them a piece of the cover price in exchange for helping promote the book once it’s published.

My goal is to help anyone in the fight – against cancer, or any other life-changing disease – navigate the medical car-wash and manage their medical care for their benefit.

Because if you don’t, no one else will.

2008 has been quite a journey. I’m in an incredibly wonderful place, which I don’t know that I would recognize had I not had my dance with the Cancer Troll.

2009 is already a mortal lock for my best year yet – I wish you the same!

I lost my health insurance the other day – and I’m not going to look for it.

I have reason to be very glad this didn’t happen last year, given the cancer-for-Christmas gift I received at my mammogram last December.

Now that I’m in the self-pay column, I called the imaging practice where my next mammogram will take place to ask what the cost would be.

I have seen Explanation of Benefits (EOB) statements from my insurer – when I had one! – that listed the above-the-line cost as $600 to $1,000. Then there was the ‘negotiated discount’, and the other horse-trading hand signals that brought the cost down to around $350, which the insurer then paid the doctor.

Every EOB I’ve ever seen had this sort of dance on it – high initial cost, the insurer does a ‘look what a great deal we got for you!’ discount jig, and hey-presto, the final price is reduced by 50%-or-more.

So, when I called the imaging center, I was bracing myself for sticker shock.

I did get sticker shock, but in the other direction – a screening mammogram is $135, a diagnostic mammogram runs $120-$180, and ultrasound, if necessary, adds another $75.

Meaning the worst-case cost scenario is….$255.

Mention health care in any circle, and you’ll hear cries about costs spiraling out of control, of doctors who lose money seeing HMO patients, of hospitals taking it in the shorts on equipment and supply costs, of patients paying $200 for an aspirin (I guess that’s ’cause a nurse delivered it in a little paper cup?), of that last week of dad’s life when his hospital bill hit $100K.

Here’s a question – could it just be because of managed care that costs have managed to careen out of control?

I’m old enough to remember that, back inna day, you went to the doctor and paid for your visit on the way out.

If you had a prescription, to went to the pharmacy and got it filled…and paid for it.

Needed lab work? You went to the lab, and paid the bill when it arrived.

You had insurance coverage against the day – which you hoped to avoid – when you’d have to go into the hospital.

Here’s a suggestion for Tom Daschle, and the incoming Obama health care team: you don’t need to invent a new system. Just go old-school, and add technology to it. Give consumers control not just over their care, but its cost.

When you’re in the exam room with your doctor, thanks to managed care that’s you, your doctor, and fifty people you can’t see involved in decisions about your medical care.

That’s fifty people who all want their ‘taste’, who add their cost – for administration, for oversight, for just taking up space in the transaction – to the cost of the actual visit.

That’s the first way to attack cost – admit that the Great and Powerful Oz, the whole ‘managed care’ monolith, is really just a venal clerk behind a curtain who’s inserted himself into the medical care system.

Putting patients back in control of their own medical care – really – would not just help control costs, but it might also drive actual patient ownership of their health. Now there’s an idea.

So here’s a suggestion – kill managed care. And don’t have a funeral.

That’s my story, and I’m stickin’ to it…

My girlfriends Susie Galvez & Mary Foley have posted their most recent Girlfriend We Gotta Talk radio show on their website.

This week’s guest is yours truly, the Mighty Mouth herself, talking about what it’s like to get cancer for Christmas.

It’s quick, it’s fun, and it’s funny – give a listen!

Below is something that my good friend Mary Foley sent out to her Live Like Your Nail Color Club this week. First, let me say this: Grrlz, get your mammograms. Guyz, encourage the women you love to get their mammos. Trust me, it’s a very good thing.

Also, check out Mary’s radio show with Susie Galvez, Girlfriend We Gotta Talk, on Thursday, Oct. 16 at 5:30pm Eastern on WHAN 1430AM in Ashland VA – or as a podcast on the GFWGT website starting on Friday, Oct. 17 – to hear me talk about how a mammogram saved my life when I got cancer for Christmas last year.

Another thing I gotta say: Mary has been one of the MVP’s on my Fight-Cancer team. Bodacious, bold, and fierce. She’s the shizzle, all that and a bag of chips, the whole nine yards, and so much more.

OK – here’s Mary’s message:

Hey – are you familiar with my 4 steps for
doing your nails and living like your nail color?

Today I was thinking about STEP 1.

STEP 1 is called “Preparation” because before you put on new finger or toe nail polish you have to prepare your nails. Take off old polish, trim, file, maybe do a little exfoliation to clean up your cuticles.

Bottom line is that you’re getting back to your naked nails. It’s a great time to reflect on your true, authentic self. So many women put themselves down one way or another. Truth is there’s some really good stuff inside each of us, if we allow ourselves to remember.

To shift from criticizing yourself to recognizing the good stuff, I recommend you ask yourself a simple question while you’re preparing your nails for new polish:

Ask Yourself — > What’s 1 thing I’ve done recently I feel good about & why?

Maybe it’s an act of kindness like calling a friend who had a tough day. Maybe it’s an act of courage like saying “no thanks” to another volunteer activity that will put your sanity on “tilt.”

Take a moment to answer this question. I’m sure you’ve done a thing or 2 to feel good about. Let the good feelings wash over you. Your actions may seem small, but they are powerful reflections of your true, authentic self.

I was thinking about STEP 1 today and my heart is jazzed about my answer to that question.

You can imagine how much of a kick I get out of each nail polish color I create for the Live Like Your Nail Color Club. This month’s color is extra special.

It’s a peachy-pinkish color called “Mammo Mango” I co-created with my friend Casey Quinlan. Mammo is short for mammogram, that test we love to hate, but one Casey has learned to love.

Because it saved her life.

Truth is, if she didn’t get her annual mammogram last December and if she didn’t take charge of her treatment she might not be alive today.

I’m soooo admire how Casey courageously set out to banish cancer from her body. After surgery, chemotherapy, and radiation treatment, the fight isn’t over but she’s winning!

So, I asked her to co-create “Mammo Mango” nail polish. And, I captured her story and put it on a CD. I’m sending one of each to every member of the Live Like Your Nail Color Club this month in their Oct Goodie Package.

We’re celebrating the power of a mammogram, the power of taking charge of your own health, and the power of the human spirit.

Here are 3 ways you can celebrate with us!

1.  Go get your annual mammogram!

Just do it!  Celebrate if you don’t have any problems. Gather your family and friends together for support if you do.

2.  Join the Live Like Your Nail Color Club and put on some “Mammo Mango” polish. Be inspired by Casey’s story. Be proud that you’re in charge of your health.

A 3-month Mini-Membership is only $39, which is small on price but big on increasing your sanity, confidence and fun.

Bet you’ll laugh at the nail color names I created for Nov & Dec.  Check ’em out here:

Live Like Your Nail Color Club

3.  Completely Brand New!  Give a Gift Membership to the Club to a friend.

Someone who is battling breast cancer, someone who won the fight, or someone you know who needs a boost.

Choose between a 3-month Mini or Annual Membership, which includes a bonus Starter Kit with 2 more fun polishes, base coat, top coat, nail file, and toe separators.

I’ll send them a card bragging on you and welcoming them to the Club.  😉

Look for the wrapped presents to click on here:

Give the Gift of Living Like Your Nail Color!

~~~~~~~~~~~~

OK – that’s my story (and Mary’s)…and we’re both stickin’ to it!

As a person participating in the fun-filled romp known as chemotherapy, your ‘umble correspondent has been able to make all sorts of wonderful discoveries.

There was “anorexia”, wherein our heroine was introduced to the practice of picky eating. Not something she had been familiar with previously, at all.

There was “chemo brain”, wherein she learned just how stupid “dumber than a box of rocks” really was. Is. Whatever.

Today, she learned that the two can be combined in new and interesting ways.

Say, f’rinstance, one learns that one’s blood is dangerously low in something called neutrophils – due to the aforementioned chemotherapy’s Sherman-like march through one’s bloodstream toward whatever cancer cells might have the temerity to remain within one’s corpus. (Note – there ain’t none, one just has to run the bases, like any other home-run hitter.)

One reads up on neutrophils, and white blood counts, learning that a diet rich in beef, cooked mushrooms, and red/orange/yellow wegetables is just the ticket for getting that neutrophil level back up to the mark that will prevent our heroine from getting hit with Neulasta. That being the drug used to hammer one’s marrow into manufacturing neutrophils, while also apparently causing bone pain – IOW, not something our heroine is inclined to entertain the deployment of, since she’s got entirely enough chemicals runnin’ ’round her veins, thank you very MUCH.

Anywise, the thought of some yummy beets seems like a good thing, and she hits the local Kroger in search thereof. What ho! Organic beets! With greens on top! On Wednesday, the beets are steamed and enjoyed, with a steak and sautéed ‘shrooms. Yum. She feels better already.

The greens were left in the weg crisper, and today’s lunchtime seemed like just the time to wilt ’em, butter/salt ’em, and get outside ’em. So she did.

Oh – has it been mentioned that a regular side effect of chemo involves the, um, acceleration of elimination of the alimentary sort?

We think she set some kind of land speed record around the time from beet-green ingestion to beet-green removal. The old aphorism about what goes fast through a goose came to mind.

Beet feet, indeed.

The things one learns when one isn’t paying attention.

That’s my story, and I’m stickin’ to it…

For those of you who have been paying attention, you know I got breast cancer for Christmas. I had my first chemo treatment on Monday, 2/11 (in keeping with that holiday theme – Happy Valentine’s Day, early!), and so far the after-effects have been weird, but manageable.  I keep thinking of cartoons where some character starts quivering, and then his head explodes into a Dali-esque fright mask with, oh, a foot springing out of his forehead.

That hasn’t happened. Yet.

What is happening is that instead of my usual eat-like-a-garbage-truck self, I’ve become someone who has to think hard about what might be edible. The data sheet on my chemo cocktail lists this side effect as “anorexia” – which makes me laugh so hard I can barely breathe. My name and anorexia in the same sentence? Get outta town.

The closest analog I can come up with for the current eating sitch is this: back inna day, when I did offshore sailing, there were more than a few times that the rest of the crew was crawling around on the deck, beggin’ to die. At those times, my experience was usually, “well, I don’t feel GREAT, but how about I make some soup?”

The most memorable version of this was twenty years ago, delivering the schooner ORIANDA from Lauderdale to Tortola. The skipper decided to leave Lauderdale literally on the tail of a hurricane (luckily only a weakening Cat 1), just before midnight.

No, it didn’t seem like a great idea to me, either, but a ship is not a democracy.

Another woman on the crew and I had drawn 12-4 watch, meaning we were first up, and would be fighting the Gulfstream by 2am. When we did hit the Stream, we had 15 foot cross-seas and were shipping green water over both bows. Both my watch-partner and I were literally tied to the boat (as one always should be offshore), taking turns steering, which was like trying to wrestle an anaconda. At about 3am, the engine started to sputter (we were under engine and sail power – we needed everything we could get to keep the ship stable!) – the skipper and the mechanic headed into the engine room to see whassup. Diagnosis: busted fuel hose.

The engine room was off the pilot house, which was directly in front of the steering station. In order to work on the engine, the pilot house light needed to be on. In order to see the compass and steer a course, the helmsman needed to have the pilot house light OFF. We struck a
compromise – I would hold the pilot house hatch doors closed and shield them with my body, preventing the light from hitting the helmsman in the face and thereby risking a course change for Havana. Or Maine.

So, there I was, holding the doors closed as heavy diesel fumes rolled past, and the boat tossed around like we were driving through a washing machine on full agitate. Right about then, the 4-8 crew staggered up on deck. The first mate, who had asked me every five minutes before we left port if we had enough Dramamine on board “because sometimes people get seasick on these deliveries”, took over the helm – which was right behind me, remember? – asked the skipper for his course, was told zero-nine-zero, responded “aye, aye, steering zero-nine-….” The rest of his reply was literally drowned out as he started hacking up everything he’d eaten since the Carter Administration.

He continued this until dawn. My watch-mate had to re-take the helm, since first-mate-dude was pretty useless. Really hard to steer while barfing – you tend to drag the wheel over with you as you heave. I’m still holding the pilot house doors closed. So: diesel fumes, a violently ill crewmate less than two feet behind me (at this point, he was like a sodden mass of rags at the bottom of the cockpit…yep, beggin’ to die), and motion so violent that we’re all literally hanging on for dear life.

What I wanted most right then – other than for things to settle down, just a bit, or for blessed dawn to break – was some coffee. And some soup. Which I got, a few hours later, once the dawn did break and I could get down to the galley (I was ship’s cook), clear away the debris from the rough passage, and get things going.

So, chemo “anorexia” for me is more like eating like a 10-year-old. PB&J sandwiches, mac-n-cheese with grilled chicken, chicken noodle soup. My usual chili, garlic, and stinky cheese palate has vanished. It’s only until June, though – who knows, maybe I’ll feel better about bathing suit season after this!

That’s my story, and I’m stickin’ to it.

It’s been a while, so let’s catch up: got cancer for Christmas (whoopee!), and then a New Year lumpectomy, followed by Valentine’s Day chemo. Coming up later this year – Fourth of July radiation, in which I’ll get beamed up by the mother-ship.

Enough of that. Back to another story already in progress.

I’m sure you’ve wondered why I haven’t weighed in on all the twisted tales being told daily – even hourly – by all sides of the current political race. All sides in that sense including the candidates, the flacks, the mainstream press, and “new media”, a/k/a the blogosphere.

The answer there? Exhaustion, pure and simple.

Back inna day, when political noise emanated from just the campaigns and the mainstream press, I thought there were way too many words being used to describe way too little real thought or policy. Adding the chorus of new media voices to that dissonant opera has done…what, exactly? At best, it gives every possible view the opportunity to have its champion, particularly on the media side. At worst, it confuses the hell out of everybody.

This reflects the scattered political landscape this country – and any democracy – has, whatever tidy little bundles history books try to make out of the American past. For every issue: fetal rights, fetal pig rights, gay rights, “sanctity of marriage” rights (that’s got to be a joke, considering the divorce rate in the U.S.?), education, dedicated ignorance (a/k/a “teaching creationism”), there is a candidate that will meet your needs.

Once you pick one…is he, or she, electable? That’s what this long, muddy slog toward the first Tuesday in November is purportedly about. I have to admit, though, that as I watch this horse race, I’m thinking less Lincoln, “To give victory to the right, not bloody bullets, but peaceful ballots only, are necessary”, more Barnum, “There’s a sucker born every minute.”

Remember that old song, “All I Want For Christmas Is My Two Front Teeth”?  A sincere cry, albeit with a lack-of-dentition lisp, for a physical transformation. Just in time for Christmas.

I’ve had occasion to recall that song in the last few days, as well as one of my favorite Jules Pfeiffer cartoons.  In the cartoon, a guy is bemoaning all the things in his life that have been discovered to cause cancer, the most recent being scotch whiskey.  In the last panel of the cartoon, he lifts a glass (scotch, of course) and says, “Whoopee! Cancer!”

This year, I got cancer for Christmas.  Whoopee! Cancer!

Yeah, yeah, I can hear you screaming.  Trust me, it was a gift, and here’s why.  I’ve gone for a mammogram every year since I turned 40.  That’s fifteen of the suckers.  This year, instead of hearing what I’d heard every year before – “see you next year” – I heard this from my radiologist as we looked at my films: ”Hmmm…”  There was a “thing”, and he wanted to take a look at it.

Magnification mammography.  Stereotactic core biopsy (for this procedure, I highly recommend an IPod with volume set to “Stun” playing something like the Clash or Pearl Jam).  A diagnosis where he actually said, “Well, I’ve got good news and bad news.”  You can guess the bad news, right?  The good news is that it’s so small that the only thing that makes it Stage 1 vs. Stage 0 is that it’s an invasive carcinoma.

Why am I telling you about this?  I think you probably have an inkling already.  Girls, get your mammograms.  Get a baseline by 40, and then get one every year after 40.  Guys, encourage the girl you love to get her mammograms. And help her get through what might come after, because it will be infinitely preferable to planning her funeral.

Girls, I know that mammography is a classic example of a medical device made by a man.  I know that you feel like you go in a 38C and come out a 42 Long.  I know that if guys got screened this way for testicular cancer, there’d be some big changes quick.  As much of a pain in the boobs that mammograms can be, this one saved my life.  There was no lump.  Who knows when
a lump would have been palpable, and how far this thing would have spread by then?  I’m glad I don’t have to learn the answer to that question.

I’m taking this as a gift.  I’m also choosing to look at what’s going to get yanked out of me this way – it will be a complete encapsulation of all the anger, resentment, self-doubt, all the crap collected on a 55 year journey.  It’s coming out, and I’m moving on.

Since I’m more of a Druid than anything else at this point, I’m marking the Winter Solstice this year as my Yuletide celebration.  The end of the darkness, and the return of the sun.  An appropriate image for a time in my life where that has, literally, happened.

Happy New Year.