On advocating for early cancer detection — no matter what your trusted doctor says. SPEAK. UP.

I was just thinking about all the people in the last year, all of these loved ones who died very shortly after abrupt end-stage cancer diagnoses. It has been awful. Not a single cancer was a so-called “lifestyle cancer” (like lung, which too often is NOT from smoking).

But many might have been treatable with earlier diagnosis.

I was thinking about this, not entirely because of my recent losses, but for the losses of others in my world, the recent losses others have suffered.

I don’t know what the answer is, but please, please, advocate for early detection, and PLEASE question your doctors, who are often awfully hogtied by insurance regulations and have to always treat the simplest symptoms rather than testing for the horrible thing they suspect.

When she was just three, my oldest child went for almost two weeks with undiagnosed pneumonia. Her only symptom was a fever. That’s it. No coughing, no sore throat, no stuffy nose, no rash, no nothing. For days — days, and then weeks — the well-meaning but rule-following doctors put us off for lack of other symptoms. Wait and see, they said. It’s just a virus, they said. Hydrate. Give Tylenol. Eventually, the (way overdue) chest x-ray told a different story. After two weeks, by the time they figured out what was going on, her chest — not just her lungs, but her ACTUAL CHEST CAVITY — was filled with fluid. She needed surgical intervention to save her life, to drain the fluid and repair the damage, and spent more than 10 days in a hospital. (Incidentally, this event may or may not have triggered the years-later onset of Type 1 diabetes, an autoimmune disorder which many experts believe is directly related to an emergent viral or bacterial onslaught, such as was her pneumonia.) Had anyone done the chest x-ray earlier, just days or a week earlier, perhaps the outcome would’ve been different. On many levels.

But insurance companies — and because of that, well-paid and well-intentioned doctors — don’t approve anything at first. When it could count. Err on the side of statistics is the motto.

After all, most fevers are not chest-cavity-filling pneumonia. I get that. But an x-ray after, say, day four? Maybe justified. Maybe more than justified.

And then there is this.

My dad died of end-stage, too-late-undiagnosed liver cancer, but his doctors for many, many months treated his symptoms with prescriptions aimed at relief of reflux and related stomach issues, never once scanning for something else — despite his prior cancer history.

My mother-in-law is battling for her life. She conquered cancer twice before, yet despite that documented history, no doctor was able to effectively test early on based on her new complaints. The protocol was just not approved, based on a checklist which had nothing to do with any apparent rational thought. She bested cancer twice before and might lose the war now simply because nothing was done sooner. Because steps could not be skipped.

It’s not entirely the fault of the medical practitioners.

As patients, we are routinely assessed by medical professionals and treated for the simplest diagnosis. Because that is the rules of the insurance chart. You can’t move up the chart unless all the other steps are checked. There are rules for tests, depending on age, medical history, cancer statistics, etc. Days, weeks, months pass. And all the while, disease marches on, destroying everything in its wake.

I had a mammogram today. Not because it’s on the medical charts as “necessary” (I think I might be younger than the recommended age, but these days only just?) but because 7 years ago I had a lump.

It was a scary time, that lump and all the lumpy-related scans and biopsies and nights cuddling with four kids under the age of five and reading Good Night, Moon and The Very Hungry Caterpillar and Where The Wild Things Are and wondering when someone would give me an answer and whether or not I would be alive to see my four tiny kids be potty-trained, never mind being alive to see them get married and have babies of their own so I could know they read Good Night, Moon or the story of Max  — or all the stories yet to be written — to those yet-c0nceived babies I absolutely would spoil in the way only grandmas can.

I wondered whether or not I would be alive to see my babies get to third grade.

It was a scary time, and thankfully, that ended okay. So now I get an annual test. It’s not the best way to spend part of the day, but the clear scans make the boob-smushing worth it.

Yet many women of my age (mid-40s) don’t have this exam. (Insert gratitude here for my lovies who survived even worse than I went through.)

Even more of us don’t get colonoscopies.

Insurance companies are even starting to question the funding of routine pap smears for anyone younger than, oh, 80 or something?

And almost no medical practice authorizes the regular chest screenings of patients who smoke (choose to smoke? Are addicted to nicotine? Maybe that’s why they don’t authorize tests? Because dirty smokers deserve to die?)

Almost none of us are screened for heart disease, other than through lifestyle questions.

I am in awe of the medical tests we have available to us in this lifetime. It is STUNNING to think of what doctors can see, can visualize, can touch and fix with all this technology! What we can do healthwise — what illnesses we can stop, what awful we can fix — it is amazing to consider.

We HAVE to become a society that not only expects, but demands our trusted doctors (not the faceless robots that answer our button-pushing insurance phone calls) to err on the side of caution. We HAVE to insist on something more than the wait-and-see. We deserve more than the lowest-common-denominator health care.

We have to insist on early testing. By doctors — not the paid lobbyists. We have to insist that doctors be allowed to save lives, and not just the lives of 3 year olds whose moms write poignant essays on social media, or the lives of all people who shop at Trader Joe’s and Whole Foods and somehow proved something about their commitment to quality of life and are subsequently more deserving than everyone else, especially those who eat hot dogs. Or Cheetos.

We have to insist that everyone deserves proactive health care, that no one should be denied appropriate care because some chart dictated otherwise.

Babies, moms, dads, drummers, cashiers, homeless, lawyers, teachers, taxi drivers, florists, waiters, mail carriers, the owner of the yarn shop in the town square.

Everyone deserves more than the lowest-common-denominator health care.


Even the dirty smokers.




To Kegel, or not to Kegel?

I was totally going to start this post with some kind of reflection or explanation for my lack of blogging these past two months — something funny and clever about my failure to keep a non-resolution resolution just a few days after the new year.

YawnThen I was like, *yawn.* People reading this are mostly parents too, who know all about work and bills and kids and illnesses and clutter and injuries and errands and conferences and all the blahbidy blahs that come with life. I don’t have to write about that today.

Nope, today I’m going to blog about the one thing that concerns Moms everywhere — incontinence.

I mean, we’re still in the cough and cold season. Which makes for a lot of knee crossing.

I gave birth to four good-sized babies in five years. And, with all due respect to Dr. Kegel, that’s a whole lot of stretching out. Given that I’m not made of elastic, well, let’s just say it’s not all snapped back yet.

This is all on my mind today because, in the middle of de-cluttering my computer files, I came across this bit of writing from the end of January, when I was still in the throes of an awful, lingering, hacking-up-my-lungs cold:

Note to Dr. Kegel:

Your “exercises” are a BIG FREAKIN SCAM.

You go ahead and push out multiple kids from your girl parts and see how well those parts rebound even after YEARS of doing all those squeezes (and yes, I mean doing those exercises watermelonwith all the peace and serenity and focus and commitment of the good and powerful mom who did that birthing and the pushing with complete joy and purpose and without any medication at all, which is to say all the joyous and blessed pain that comes with squeezing a watermelon out of your vagina).

Dr. Kegel, after all that pushing and tearing and widening and re-sizing, YOU sneeze without crossing your legs and see what happens. YOU get bronchitis and then you’ll know what constant coughing and mucous-expelling and re-applying sanitary napkins have in common.

YOU get yourself a female pelvic floor, and then we’ll talk.


Mothers everywhere

So, what say you, ladies? To Kegel, or not to Kegel?

When life gets twisty…

I am almost failing my post-a-day goal! But today was a crazy one. It went something like this:

Child mentions physical concern.sick kid

Parent schedules doctor’s appointment for later in the day.

Doctor confirms concern, sends parent and child to hospital for further testing.

Parent and child go to hospital and wait.

And wait.

And wait.

And get awaited-for test.

Results are positive, less extreme than feared. Medicine and follow-ups prescribed.

Parent and child return home after six hours at various medical facilities, for a quick dinner, hefty doses of intense medicine, and bed.

Waiting parent consumes wine and gives thanks for positive diagnosis, which didn’t included the very much feared surgery, or worse, the unspoken but consuming fear of a suspicion of malignancy.

Child is sleeping. Parents are fed and relaxing. Thanks are being raised for this moment, when all is well and the future is hopeful.

And an extra prayer is being sent that the doctors are right.



Please, that they got it right this time.


The pressure of January 1st

I’m very glad January 1st is almost over. It’s a lot of pressure, this one little day out of so many, pressure to make resolutions and plan life changes and carpe diem and all that stuff.


I don’t like to make resolutions any more. I used to — I’m a huge fan of lists, and crafting a Things To Do or Accomplish in the New Year List used to make me happy. But then I’d always get to December and realize that I hardly did any of the things on my list, and the failure make me depressed. I mean, what’s the point of making a list if you can’t check things off? So I stopped making the darned list.

Lately, what I do, ’round about this time of the year, is think about how I’m going to live better. Just little things. Remember that I don’t need to save all the vegetables for the kids — I need them too. Get some more fresh air. Stretch. Laugh. Possibly come up with a system of organization that once and for all relieves me of all the clutter.

My sister, who’s a health coach and possibly the biggest cheerleader anyone could ask for, recently wrote about New Year’s and talked about the idea of “do overs”:

I like to think of the new year as a do-over! Did something you tried not go so well?  What if you yelled “do over” like we did when we were kids and tried again?  What would your life be like if you gave yourself permission to let go of your disappointment and try again?  Why don’t you take this year to find out?

Isn’t that a great way to look at it?

This year I’d like a do-over. To try every day to just be a slightly better version of the last-year me.

I’m also going to challenge myself to blog more. My cousin did a great project last year — a picture that captured a moment of inspiration or beauty or challenge — and she posted one a day. I’d love to try that, but, frankly, I don’t go to that many places which would make for a boring 365 pictures. But could I do a blog post a day? Hmm….perhaps.

The other thing I’d like to accomplish is to finish my novel’s revisions and start submitting it — AND work on a new one.

That’s it. Humble goals. Live better. More vegetables. Fresh air. Stretch. Laugh. Write more. *

Happy New Year!

*Notice that none of this mentions my husband or children. That’s just because, really, a better me is good for them, too. It’s an all-around win!

A Stanley Cup for the Bruins — but we’re celebrating another victory.

Today, thousands of hockey fans are celebrating the victory of the Boston Bruins over the Vancouver Canucks to win their first Stanley Cup in nearly forty years. There will be parties and parades and champagne and beer and music and applause and speeches and smiles.  Today, Boston hockey fans celebrate a huge victory.

Here, in my world, we are also celebrating a victory.  We won’t have parades or beer or speeches, and while there is always music and a whole lot of smiling, we aren’t doing anythingspecial.  In fact, it might be that no one in my family but me is thinking about this milestone — surviving the first year of life with diabetes.

Last June, Mitzi was recovering from her week-long hospital stay,  and we were all adjusting to the news that our world had changed forever.

It’s funny.  It occurs to me that I haven’t really written anything about what it’s been like the past year.  I thought it, writing about our new normal, from time to time, but never did.  Perhaps it was because I didn’t want to be a writer who could only write about her child’s illness.  Perhaps it was because my child and her illness was pretty much all I thought about every day — whether in the front or back of my mind, it was always there.  And because of that, when I sat down at the computer, perhaps writing was my escape.

Perhaps I was just grieving.

All parents have hopes and expectations for their children — I don’t mean the dreams-of-Harvard-or-sports-star variety, necessarily.  We hope that they will be happy and healthy, and survive adolescence relatively unscathed, and become happy, healthy, honorable adults.  Stuff like that.  And when you are suddenly informed that your child has an illness or a disability, your world shifts.  Your future shifts.  And you must shift with it.  For parents — unlike kids, who adjust far more quickly — that means grieving and letting go of whatever expectations you had.

We make new ones, of course, and certainly a diagnosis of diabetes is not as severe or shocking as another diagnosis would have been.  But life has changed.  My child will face challenges every day that before simply did not exist.  And as the parent, I have to not only deal with the challenges with my child, I have to help her learn to deal with them on her own, too.

So, the first the shock, then the grief over the loss of a future you expected.  And all of Kubler-Ross’s stages of grief likely follow:  the anger, denial, depression.  I think that this is where my mind has been, even though you wouldn’t have seen it, to look at me and talk with me and watch me do my motherly thing to keep my kid healthy and be an equally good mom to the other kids as well.

But, yes, I have been angry — at God, the universe, the injustice, no one in particular.  Angry because there’s actually no one to blame, and for crying out loud, if I could find someone to blame, I could find a solution (or at least something to punch).  Angry with that feeling of helplessness, my inability to change anything, which is just about the darkest pit a parent can visit.  Angry that I had to visit that dark pit of helplessness and still find a way to smile and love and be a good mom and wife.

Angry?  Yup.  Not always, but sure, sometimes it spurted out of me at odd moments, for no obvious reason.  Denial?  Well, it’s kind of hard to deny the obvious, especially when you have to constantly watch what your kid eats and give her a bunch of shots every day.  But maybe denial in the form of not really talking about much, and by not talking about it much, maybe denying that it was basically the focus of our family.

Depression?  Sure.  Living with the diagnosis is exhausting.  Thinking about it all the time is exhausting.  Riding the roller coaster of blood sugar levels — the way they change swiftly, unpredictably, shockingly — is exhausting.  Some days I was just.  So.  Tired.  Sleep was good.  Awake was bad.  Depression?  Yes, some.  Not every day, not all the time, but it was there.

And here we are today, a year later.  Acceptance?  I suppose.  I’m not angry any more — okay, I have my moments of frustration, particularly over the last month since Mitzi started her insulin pump, which was a new learning curve, almost like starting over.  But I’ve accepted life as it is.  I’m still exhausted.  I still get sad that Mitzi has to call me from school to see if she can have a cookie for a friend’s birthday, sad that the school nurse emails me throughout the day with blood sugar numbers, sad that the diabetes adds an annoying complication to my daughter’s childhood, just as she is starting to knock on the door of puberty (behind which is a whole host of new and foreign complications, also known as The Teen Years).

Sometimes I just wish that she could be like every other kid, footloose and fancy free.

And in a way, she is.  Over the past year, Mitzi has at times been annoyed, frustrated, angry, sad, and just moody about having diabetes — but mostly she is just the same smiling, ultra-creative, independent, first-born-bossy, mega-Harry Potter-fan self.  Having diabetes is just another part of her, like her freckles and big feet and great blue eyes.

She recently told me that it was hard for her to remember what it was like Before.

That’s really what matters, of course.  The time of Before has pretty much ceased to exist for Mitzi, who is young enough, resilient enough, to only know how to live in the Now.  Her aspirations and dreams remain what they are — there is nothing she cannot do! — and will continue to grow with her.  For her, there is no grief, only hope.  And that helps me leave the grief behind and find acceptance.

So today I celebrate this milestone, quietly, to myself, because it’s a good one.  We survived.  We got to the other side where our future is spread before us.

It’s not a bad view, at all.

You can have my cupcake when you pry it from my cold, dead hand….

Well, it’s about time we did something about the pervasive health hazard that has taken over our schools — the evil birthday cupcake.

This long-overdue action was taken locally by the wise leaders of schools in Mansfield, Mass., (here’s the Boston Globe story), saving hundreds of kids in that town from the ravages of butter, chocolate, and sugary frosting.

Thank God.

School officials cite the alarming rise in childhood obesity and a spike in food allergies as support for their decision.  And they’re not alone — many districts in Massachusetts and other states have started a serious crackdown on sweets.

Whew.  Now I won’t feel like such a dork when I hand my kids a slice of watermelon with a candle in it for their birthdays, as Janice King, president of our state’s School Nutrition Association, has suggested be a better option.

Except, I can’t, at least not for my oldest child.  She’s diabetic.  All those fruit sugar carbs are a big no-no for her.  Sorry, Janice.  How about a nice bowl of spinach? 

The funny thing is, the school cafeterias probably are a bigger contributor to the poor diet of our kids than the occasional birthday treat.  I know.  I get a monthly printout of each lunch — every component broken down to grams of protein, fat, carbs, calories, etc. — in case Mitzi wants to buy lunch one day.   Sure, there are choices that are better than others — an iceberg lettuce salad, for instance — but really.  Are your third graders choosing that over chicken nuggets?

I understand the issue of food allergies, sure.  It’s terrifying to know that there are foods out there that could make your kid sick — possibly kill her, if not handled immediately.  I get that.  Because diabetes is a little like that — without taking insulin, any carb, be it sugar or flour, fruit or cracker , can cause my kid harm.  It won’t kill her, you say?  Well, she spent three days in intensive care last year with blood sugar so high it almost killed her.  As a parent, it’s my job to make sure that she doesn’t eat what she’s not supposed to.  It’s my job to teach her the rules, enforcing them, working with other adults around her to ensure her health and safety.

But I have never, ever told another parent that HER kid couldn’t have a lollipop or candy cane just because it’s a danger to my kid.

Perhaps if I lived in Mansfield, parenting a kid with food concerns would be easier.

As for the other argument — the one about our kids being fatter than ever — maybe the school committee in towns like Mansfield should reinstate daily gym classes instead.  Calories in, calories out.  You eat, you move.  If you move less than you eat, you get fat.  When kids have virtually no time during the day to run around, they are likely to put on weight.  It’s that simple.  It’s not the birthday cupcake once a month that’s doing it, folks.

Oh, Jen, I hear you say, the kids have all that time after school to run around and get exercise.  Well, you might be right.  They might have that kind of time — if they don’t have to go to after school care because they have parents who work.  Or if they can find time after the hours of homework they get.  Or if they among the very few children who can play freely in their yards and neighborhoods, riding bikes and building forts and shooting hoops and skipping rope.

Aha!  How about, before singing Happy Birthday, we have the class do fifty pushups?

Every day well-meaning adults do what they can to protect kids from harm, real or perceived.  And we should — we’re the grownups, after all.  But we’re going about it the wrong way.  Simply eliminating access to something is not going to teach your child anything about making choices.   It’s a very big world out there, and unless you plan on accompanying your child for every second of it, she is surely going to face a conflict and have to make a choice on her own.   How will she know what to do, if she’s never done it before?

As for birthday cupcakes, well, I’ll keep baking them and serving them.  Some kids, like my own daughter, won’t be able to indulge.  But that doesn’t mean her brother or sisters can’t — or the other kids in the world.  For my daughter, I’ll make something else.

And don’t worry — at our family parties, I always offer fruit salad.  And I’ll make sure to run the kids ragged to make sure the cupcake won’t tip your bathroom scale.

As for the grownups and your celebratory indulgences?  I’m afraid you’re on your own for that one.  No one’s banning truffles and champagne.

At least, not yet.

Waiting for the rain

One of the reasons I haven’t been blogging lately is I feel as though were I to say half of the things on my mind, you’d think I was nuts.

But here’s the truth:  some days I’m too much in my own head to write.  Some days, anxiety chokes me until I can’t breathe, until I want to throw up.  It makes my skin hot and crawly, and steals my voice.  On those days all I can do is power through, be the best parent I can under the circumstances, and hope to ride it out.

And yes, I take medication, but some days it’s not enough.

To stop the shakiness and nausea I clean.  I can’t sit still.  I wander from room to room, picking up toys and shoes and balls of lint, things that on normal days would be invisible to me.  I scrub the floorboards in the kitchen and scan the ceilings for cobwebs.  I let the kids watch too much TV and help themselves to snacks.

I first began to suffer this debilitating anxiety when I discovered the lump in my breast.  Getting a clean bill of health, getting a prescription, starting a new routine of exercise and yoga and meditation all helped.  But as life went on, those things went by the wayside.   Slowly, old habits and fears crept back in — I started smoking again.  I worried that a chest pain was a heart attack, a hemorrhoid was cancer.  Since Mitzi’s diagnosis I’ve been too focused on what to do for her to think about how I felt about it all.

So here I am today.  Hands shaking, heart thumping.  Phantom worries swirl around me and I have to remind myself to breathe.  The only thing that keeps me from crawling into a dark closet is my children.  For them, I’ll stand up and breathe and help them make play dough and splash them in pool and do the best I can, all the while hoping that tomorrow will bring rain, and peace.