Art Linkletter, Bill Cosby, and those in their footsteps have thoroughly proved that kids do say the darndest things. But when it happens at your own dinner table, you definitely must take stock.

I realized tonight that despite my valiant efforts at “normalcy” (whatever that is), I really wasn’t fooling my 10-year-old. He stated right to my face that he’d had quite enough of my meanderings through the healthcare system.

In response to my explanation about an upcoming hospital stay, he didn’t miss a beat: “Is it life-threatening?”

This is the kid who cuts me no slack. He’s the one who looks for buttons to push, always finds them, and even creates new ones. Face of an angel, soul of a hurricane. So, his question was a good one. Because yes, without the hospital stay, it is life-threatening. But with it, we — as a family — have fewer worries.

So the challenge as a mom is to not take this personally and to inject some humor. Does he really care that I’ll be away overnight? Of course not! It means late bedtime and possible x-box. Does he love me? Of course he does! I’m his mom.

Would I have it any other way? Not on your life.

It is Thanksgiving eve. Despite the recommended four-day refrigerator thaw, my bird is still frozen. While he takes a salt bath to “chillax” a little, I’ll be making a pie and prepping brussel sprouts. But, before I do … a moment at the keyboard.

This holiday will be the first for my family without my grandfather and my older brother. I was able to write a tribute post to Granddad but can’t yet put my brother’s passing into words. I’m not sure that I ever will.

There is something ultimately unfair that the 97-year-old died hale and hardy from complications of a fall, while the 50-year-old withered away in six months from cancer. A few days before his death, Granddad was whistling for the dining room waitress to bring him his chocolate pudding after each meal (poor form, but he did have a charming, dairyman’s way about him). A few days before my brother died, he was in hospice, writhing in unrelenting bone pain from esophageal cancer, which had metasticized to his lungs, kidneys, liver, spine…everywhere, it seemed, except his poor, suffering brain.

Oddly, in a way, they went together—just a few months apart. The day I helped transition my grandfather from the hospital to the hospice on the West coast of Florida, my brother confided he was too sick to make it over from the East coast to say good-bye. His back hurt terribly and he couldn’t keep food down. He said he preferred to remember Granddad as full of life as he was, so he wouldn’t make the trip. My mother and I urged him to go to the ER. He said he would let us know how he felt.

By the time my grandfather died, my brother had gone back to his internist, who sent him directly to the ER, which immediately admitted him with Stage IV esophageal cancer. I still don’t understand it. Probably never will. He was discharged to endure four months of cyberknife surgery, chemo, and radiation. The only time he admitted he was very ill was on the drive from the oncologist’s office to the hospice.

Realizing this is not the most “peppy” Thanksgiving post ever, my message is this: give thanks for what you have, when you have it. If we take competition and comparison out of the equation, we can each say we have lived life to the fullest. Life, ultimately, is a journey of one.

And now, back to the kitchen. Wishing you a peaceful Thanksgiving, full of who and what you love.

“That which we call a nose,
By any other name would smell as sweet.”

Or “sweetly,” depending which way the wind blows.

Apologies for mixing poets, metaphors and verb forms, but that’s just the kind of summer it’s been. It’s a time of mourning with lots of loss, sickness, life changes, and now my nose. It’s no longer the nose I was born with, thanks to heredity and youthful stupidity on sunny beaches years ago.

My nose has been called many things over the years. Ski slope. Kitty. Pug. But I always loved it, small and turned up as it was. When I was four years old, we were in Philadelphia getting off a city bus to see a tourist site. A woman stopped my mother and said, “If I had that little nose, I would hold it up in the air as high as I could.” To her, it was the perfect nose and deserved to be worn proudly.

With biopsies and band-aids leading up to the surgery, my secret sorrow has been on display for several weeks. But on Monday at the surgical center, grief took center stage. When the doctor began the numbing shots, I let out a wail and commenced braying like a stuck donkey while hyperventilating my way through sheer mortification. How perfect to be in the first treatment room, kitty corner to the front desk and adjacent to the waiting area. Do you apologize? Laugh it off? Keep crying? I tried a combo approach.

But wow did those shots hurt, way worse than the ones for the biopsies. My second round of weeping began after the tissue analysis. The good news was, the first two Mohs samples had removed all the cancerous cells. The bad news was, as I looked down at the diagram she drew of the recommended reconstruction, I could see the two bloody pits where nose used to be! Eeesh.

I was on board with the reconstruction plan, but then again — how could I not be? Who am I to argue with the woman who holds my hope for a complete, healthy nose in her talented grasp? Since my teeth were aching and we definitely didn’t want me braying again, it was time for more shots.

Incisions were made, tissue tugged and placed, and two rows of stitches completed for each closure. The first round of each suturing made a clicking sound; the second was good old-fashioned needle and thread. Somewhere along the way I asked if they could please just hit me on the head and knock me out, but that wasn’t an option.

As the final step in each phase, the smell of cap guns filled the air as the surgeon cauterized “for a better cosmetic result.” She was aghast at my comment but I thought everyone of a certain age had owned a cap gun as a kid. The technician agreed with me: caps, which definitely beats thinking about what we were actually smelling!

By the time I was waxing poetic about the complete Laura Ingalls Wilder series to keep myself distracted, the surgeon began sawing off my ear. Not really, but it sure sounded like it. As she cut the graft to fill in the left side of my nose, her assistant cranked up the best hits of the 1930s and ’40s. (Note: cardiology and skin cancer offices cater to a similar demographic.)

What an ordeal — for us all! I feel so fortunate the philosophy of the Skin Cancer Surgery Center is very caring, hands on, and patient centered. (But I really do wish they had knocked me out; actually, they probably wish they had too.)

I talk a lot about post traumatic stress disorder in SCAD patients, and do believe it plays a role in our recovery and future health care experiences. It was so comforting that the surgeon took time to hear my feelings about earlier scars from open heart surgery. Her reassurance that she will do whatever it takes to heal my nose successfully is heartening. At 48, I plan to have several decades left to wear my nose proudly through life.

I just hope I don’t sneeze for another year or two.

For more on the various forms of skin cancer, symptoms, and treatment, check out: Skin Cancer

Granddad Bass OriginalYou are probably familiar with the African proverb “it takes a village to raise a child,” popularized in America as the title of Hillary Clinton’s book in 1994. Over the years, it began to take a village to do most anything — yet a cliché stops being a cliché the moment our experience speaks to its meaning.

Recently life taught me it DOES take a village. Birth, growing up, survival, death – it all takes a village.

A few weeks ago, my 97 year-old grandfather fell for the last time doing things his way (let’s just say he insisted on standing and letting go of his walker). He broke his pelvis, collarbone, and elbow (again). While in the hospital, he developed internal bleeding and sepsis. By the time we arrived, his speech was unintelligible, but he could nod and shake his head to communicate. (The last words we understood were those when he saw my mom, greeting her one final time with his trademark, “Hey babe.”) All things considered, our last few days together were good ones. When he was awake, his eyes were bright. He laughed at a joke. But severe seizures had set in and it was time to make the decision.

I was astounded by the care and concern of each person we met – nurses, technicians, respiratory therapist, transport staff, hospital social worker, and internist. In their own ways, they gently urged the right thing for him, which was inpatient hospice and palliative care. In hospital, they were doing their jobs and treating symptoms – even doing a CT scan to try to determine the cause of his seizures. In hospice, he would receive pain medication to control the seizures and peacefully pass.

The hospice staff each were angels personified. I could have never imagined that such a place existed and that people devoted themselves to the delicate transition between life and death. I brought my grandmother to spend two afternoons with him, and she held his hand reliving their life of more than 77 years together. And then he slept.

Granddad’s experience sounds almost like the perfect way to go. Yet how many of us will be so fortunate? He was a cat with nine lives, and toward the end, was helped by my mother, my grandmother (who, even at 95, doted on him), the staff of a wonderful assisted living facility, rehab therapists, a part-time caregiver, and ultimately strangers – the staff at the hospital and hospice. I believe it is a tribute to him and all that he did for others in his lifetime that he lived so long and touched so many.

Today, we are fortunate that the village extends to the virtual world. If my grandfather had been born in 1966 instead of 1916, perhaps when he had his first heart attack at age 46, he would have told his family instead of keeping it a secret until his second one decades later.

In family lore, his “spell” was nerves, and the doctor advised him to find a hobby. In true dairy farmer fashion, he decided to fish. Never mind that he had no place to fish. He dug out not one, but two ponds on his 80-acre farm and stocked them with bass and bluegill. Some of my fondest memories are of fishing with my grandfather. It took until I was 28-years-old to finally catch a bass, and he was so proud of me. It was 6 pounds 10 ounces, rivaling the 8 pounder he hooked when I was small.

If his heart disease happened today, maybe he would go online to explore what to do to prevent future heart attacks. Or maybe, his mystery heart attack was a spontaneous coronary artery dissection, or SCAD, like mine. Today the technology exists to know the answer. In Pimento, Indiana, circa 1962, the doctor handed him unidentified prescription pills in a pocket-sized brown paper bag with instructions written by hand. Everyone did what “Doc” said, even though they weren’t exactly sure why. His advice to go fish, though, you can’t argue with that.

Granddad — your village misses you!

Why, yes … yes she has!

You know at gatherings, when people haven’t seen each other for a few years, generally some speculation ensues. Real or fake?  A lift or good genes? And in the most severe cases, who is that stranger?!

The Bionic Women (and friend)

Well, with great pride, the three of us pictured at our 30th high school reunion can state without a doubt, we definitely had some “work” done. Some serious work. From left to right: heart attack from spontaneous coronary artery dissection, repaired with double bypass surgery; an acoustic neuroma, successfully removed through brain surgery; and open heart surgery to graft an aortic aneurysm and perform a mechanical valve replacement. (No health issues for our lap man — he’s just a very funny accessory!)

It wasn’t by design, but we saved the shop talk until the very last. As people said good-byes and drifted out the door of the heartwarming gathering we’d enjoyed, the three of us found ourselves together. Like a last minute huddle, reliving the not-so-great highlights of our years since high school and gearing up for the time until our next reunion. By way of illness, we share a language and awareness you only gain through experience. We are well, at least for the moment, and that is truly all each of us ask. Because as we learned the hard way at an early age, things can always get worse. But day by day, they can get better too.

Thirty years have passed. It was enlivening to realize that within each of us, our 18-year-old selves still flourish. The bikini days may be gone, but I’m much happier being bionic!

[Correction: A Dose of Reality regrets our misstatement that "the bikini days" are over. Rock it, girl!]

 

I speak for those who can’t speak tonight. I speak for those who’ve been brushed under the rug by slight-of-hand. I speak for the dead.

We’d all like to believe that if we control our risk factors, listen to our bodies, and call for help when in need there would be no heart disease. No heart attack. No stroke. No death.

Yet we all know the truth, which is women do the right thing every day and die anyway.

Whether from congenital defect, unmanageable risk factors, or un-researched biological boogeyman, women die from heart disease every minute of every hour of every day because we haven’t devoted the attention, research dollars, or sweat equity to keep them alive.

Don’t insult my intelligence by telling me that awareness of heart disease will keep me alive. I literally could teach a course on Spontaneous Coronary Artery Dissection (SCAD) to med students today and die of a second heart attack from SCAD tomorrow because the data hasn’t been funded to explain my disease or prevent my death from it.

Talk to me about answers. Show me cradle-to-grave assessment, risk management, and care. Act upon my crisis.

Women die every minute of every day because death from heart disease isn’t yet lucrative or sexy enough for our health care and research establishments to act.

I’m fighting hard until I Go Dead for Women.

Nope, not a typo. Just a tribute to 2012, which truly was a lifetime crammed into 12 months. With a pattern of amazing, great, good, fair, fine, and ending up fantastic – I have no complaints!

As a family, we finished the year stronger and more focused than ever. As a mom, I earned intangible payoffs seeing my little boys become ever-nearer the age of young men. As a person, I experienced the fulfillment of hard work blooming into an adventure of hope. Nothing in life is certain, of course, but now more than ever, those of us with spontaneous coronary artery dissection (SCAD) have a growing body of research to look to from a dedicated research partner, Mayo Clinic.

What we are learning isn’t pleasant. Even though we each were assured that SCAD doesn’t recur, it does. Even though the party line has always been, “it’s rare,” it isn’t. Even though we’re told SCAD is a fluke, it does have associated conditions, such as FMD, which can create additional devastating health problems, such as kidney failure and stroke.

So, for those out there who believe SCAD is actually rupture of atherosclerotic plaque (i.e., it’s “our fault”), you are wrong. And if you’re one of the nonbelievers still of the mindset that interventional cardiologists cause dissections during unnecessary catheterizations, you’re wrong too. Sure, surgical accidents happen but for our population, “spontaneous” is the operative word. We still don’t know the “why” of SCAD or exactly what to do about it, but the Mayo Clinic SCAD research team is making progress.

For me, this New Year’s Eve wasn’t about auld lang syne, it was about turning the page on a life in the year — and it was a doozy. Cheers to you and 2013!

The boys and I went to a movie on Friday. And it was so efficient!! And I kept thinking, “if AMC theatres can do it, why can’t Carefirst Blue Cross Blue Shield?”

Our “appointment” with “Wreck-It Ralph” was arranged electronically. In a very harried 15 minutes on my computer at home, I activate our frequent movie viewer card (we don’t see all that many) and purchased our tickets online. The frequent viewer card allowed me to waive the processing fee. It also allowed me to show up at the Swamp Fox 22, bypass the day-after-Thanksgiving lines, swipe my card at a kiosk to generate tickets, and proceed to the snack area where I received YET ANOTHER privilege in reduced prices. And then I enjoyed a movie on top of it all.

So my proposition is this: Carefirst knows everything about me; I even have a Carefirst debit card that can retrieve my high-deductible info in micro seconds.

Explain to me why Carefirst and my health care providers require me to repeatedly explain myself and my health care information to them? Why can’t it all be on my card (since most of it is already)? Just think: one swipe, and your medical history, benefits info, and payment summary could be transferred.

You’d receive efficient, appropriate care, and still have time for a movie.

Today’s theme is “I want to change THIS about healthcare…”

The word that first came to mind for me was disconnect. At a time when the greatest effort ever is being made to involve patients, integrate specialties and improve the health care process for all Americans, I still can’t help but feel there is a giant boulder in the way. Or some kind of undercurrent — like we’re buzzing along under the impression that all is well but not quite recognizing a key factor to success.

As always, it’s the little things that make me feel this way. My primary doctor, who technically should be my gatekeeper to care and coordinating my health, will no longer write prescriptions for drugs he isn’t doling out. I was so proud of myself for scheduling an annual visit where I could streamline care and not “over inflate” my copay use by seeing specialists. But my primary would not write refill prescriptions for me. Plavix? “Well, you’ll have to ask your cardiologist about that.” Eye drops? “Oh no, that’s up to your ophthalmologist to refill.” And so on.

Whatever happened to coordinating my total care? The primary doc’s role now seems truly to be “concierge” in the guest services capacity. My visits now consist of blood work followed by his recommendation to see a laundry list of specialists.

So if that’s the way it’s going to be, my primary doctor now holds only one purpose in my life: antibiotics for the occasional sinus infection.

Because I get the sense we don’t have a partnership any more. Rather than waste a copay on him telling me to see a specialist, I’ll just ramp up more health care costs for Carefirst BC/BS by seeing specialists at my own discretion. I’ve met my astronomical deductible, so what the heck — why not?

It’s a shame. We may have a hard working team of health care providers, insurers and advocates, but without a good coach, we can’t win. We need engaged, appreciated primary care physicians to lead patients to victory — even the smallest ones — in health care.

Creating a play list to represent spontaneous coronary artery dissection is a challenging task! Just a few ideas to get started. Which songs would you add?

Torn, Natalie Imbruglia
Illusion never changed into something real
I’m wide awake and I can see the perfect sky is torn
You’re a little late, I’m already torn. Torn.

Little Talks, Of Monsters & Men
You’re gone gone gone away
I watched you disappear
All that’s left is a ghost of you
Now we’re torn torn torn apart, there’s nothing we can do
Just let me go we’ll meet again soon…
…Some days I feel like I’m wrong when I’m right
Your mind is playing tricks on you, my dear
‘Cause though the truth may vary
This ship will carry
Our bodies safe to shore

Time of Your Life, Green Day
Another turning point

A fork stuck in the road
Time grabs you by the wrist
directs you where to go.
So make the best of this test
and don’t ask why.
It’s not a question
But a lesson learned in time.
It’s something unpredictable
but in the end it’s right.
I hope you had the time of your life.

Stronger, Kelly Clarkson
What doesn’t kill you makes you stronger, stronger
Just me, myself, and I
What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone

Dog Days are Over, Florence and the Machine
Happiness hit her like a train on a track

Coming towards her stuck still no turning back
She hid around corners and she hid under beds
She killed it with kisses and from it she fled
With every bubble she sank with her drink
And washed it away down the kitchen sink

It’s My Life, Bon Jovi
This ain’t a song for the broken-hearted
No silent prayer for the faith-departed …
It’s my life
It’s now or never
I ain’t gonna live forever
I just want to live while I’m alive

Stereo Heart, Gym Class Heroes with Adam Levine
My heart’s a stereo
It beats for you, so listen close
Hear my thoughts in every note o-oh
Make me your radio
Turn me up when you feel low
This melody was meant for you
So sing along to my stereo

One, U2 with Mary J. Blige
Well it’s too late, tonight
To drag the past out into the light
We’re one, but we’re not the same
We get to carry each other
Carry each other
One…

Put a Little Love in Your Heart, Annie Lenox and Al Green

You see it’s getting late
Oh please don’t hesitate
Put a little love in your heart
And the world will be a better place 

 

My Body, Young the Giant

My body tells me no 
But I won’t quit 
Cause I want more

 

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