Sunday, December 29, 2013

Whining and Pouting.....

I'm pretty sure most of you know I don't whine and pout about the big stuff.  We've hiked a tough road in our family and done it with our chins up for the most part.  Babygirl spends days in doctors' offices, gets blood work, wears monitors and never complains about any of it.  We've put off vacations, camping trips and family get-togethers and generally made do with whatever, whenever.

So when I get pouty and whiney on the blog you already know that it is about something that is meaningless in the long run.  But I'm going to complain anyway because it is bugging me.  Feel free to leave now if whining annoys you.

Christmas Eve.

There.  I said it.  I'm pouting and whining about Christmas Eve.

Our church has gone from having a choir every Sunday and special music available for all extra services two years ago to having no music program at all now, and we miss it.  We have an elderly organist who is not comfortable coming out for evening services, although she did make herself available for the 7 PM service.  Because there was no accompanist, the 11 o'clock service was cancelled.  This service is one of the special ones that a couple dozen people really, really love - it's quiet, worshipful, meaningful and really is the heart of the spirit of Christmas. 

So we decided to do the service anyway.  My brother agreed to play guitar.  I agreed to sing.  I made myself available to do special music for both the 7 PM and the 11 PM services.

At the 7 PM service I discovered, to my dismay, that 'special music' was listed as the offertory. 

From the non-musical among you, I hear, "So?"  From the musical, I hear the cringing.  The 7 PM service is the family service.  Noisy kids.  Restless, excited kids.  Kids and babies and pre-Santa-hyped KIDS.  Musicians going solo at these services already know that there is going to be a LOT of distraction going on during the performance.  Add ushers with clanking change and collection plates and it's a mighty amount of noise - and I had selected an a capella piece..  Not an easy gig, as they say.  But hey, I know that the person who planned the service is not a musician.  I deal, a capella versus noise, no problem and get over myself. 

For the 11 PM service I tell the lay speaker in charge that I have an additional song to sing for the prelude, since there is no organist.  Okay, cool, he says. 

Eleven o'clock comes.  People sit, chatting and laughing.  I wait.  After a couple of minutes, with the lay speaker standing at the pulpit, I assume he is waiting for me, so I turn on the music and begin to sing.  It's a lovely song, really, in Mary's voice:  "The hardest part of being blest is when the angel disappears....."

About a third of the way through, the inexplicable happens.  The lay speaker starts talking - chatting really, with the congregation, as I sing.  And halfway, he suddenly asks the entire group to stand up and switch from one side of the aisle to the other so he can see them better. They comply, noisily.  I'm still singing behind him.  There is no way that he or anyone else in the sanctuary could be unaware of this.  I contemplate shutting off the CD, letting things settle, and starting over, but....really??  I mean, what does one do?  This fell rather far outside the realm of my experience. 

I finished:  "Behold, the handmaid of the Lord:  Be it unto me according to your word....."

I began pouting almost immediately.  I believe I mumbled to Citygirl, "Now I now what it's like to sing in a bar!" The rest of the service was somewhat better, but when it came to the candlelit portion, they apparently forgot that musicians need SOME light to keep playing.  We'd have been good if anyone had come up and lit our candles.

I made a conscious choice many, many years ago to not use music for my own benefit but rather to leave it in the hands of God.  Perhaps I've gotten too puffed up about it and needed humbling.  And probably someday in the future God is going to give me the NCIS head biff for whining about this, but for now I'm going to admit that my feelings are sincerely hurt.


Saturday, December 28, 2013

Third Year, Week Forty - Photo Shoot.....

The doctor opened the door, catching my mom in profile view.  He stopped, turned around, and told his nurse, "Bring me my camera, please!" 

Not an auspicious start to an office visit with a plastic surgeon.

My mom moved in with us in mid-May.  I can't recall if the lesion on her face was already there, or if it started a month or two later.  It initially looked like a cross between a wart and a skin tag.  Over time it gained a cystic appearance and continued to grow.  It was clear to me that it was going to need to be removed, but then we had the broken pacemaker wire, and Dad and Aunt Squirrely came to visit, and things were generally crazy.  During that October visit my brother came by, noticed it and expressed concern.  It was about half an inch in size at that point.  I don't recall that he noticed it two months ago  during beach week in its earlier incarnation.

The lesion is located on her cheekbone, slightly below eye level and towards the ear.  In the past 3 weeks it has begun to interfere with the position of her oxygen tubing, which must no go uncomfortably either above or below it on its way from her nose to her ear.  When she went in to have her pacemaker wire changed, the cardiologist looked at it, then at me, and said, "What the HECK is THAT?"  I dunno, dude, and we took the same classes, right?

The doctor took measurements:  3 cm x 3 cm x 2.5 cm.  More than an inch wide/high/tall.  It's like she's trying to grow a second head.

The plan:  Remove it on January 14th, local anaesthesia with sedation, and repair it with a skin graft.

The diagnosis (pending actual biopsy report):  Squamous cell carcinoma, an ugly but not ordinarily life-threatening form of skin cancer.  It's going to leave a fairly good sized scar, but it isn't near any of the facial motor nerves, so we shouldn't see any facial paralysis. 

In the meantime, the lesion has taken up residence in the good doctor's photo collection in the "holy crap" section.


Sunday, December 22, 2013

The Year We Saw Santa......

Let me begin by explaining something: My father is a 'Toon. Remember "Who Framed Roger Rabbit"? Characters like Bugs Bunny and Wile E. Coyote are living actors. 'Toons just usually live in 'Toon ghettos where people like us (who are Born, not Drawn) rarely see them. But some 'Toons are drawn so realistically that they can 'pass' as Born people. My father is one such.

I know my Dad is a 'Toon because at least once a year he falls off the roof of a house. And like Wile E., he somehow magically pops back into shape and carries on with nary an ER visit once the birdies stop circling his head. I know he's a 'Toon because he has injured himself with every type of power tool there is, including a chain saw AND a lawn mower, and never received more than an interesting scar out of the deal. I know he's a 'Toon because he's passed the gene on: My nephew once ignited the hair-spray fuel of his potato launcher into his face  (seriously? that phrase belongs exclusively to 'Toon families), leaving him browless and smoking but otherwise uninjured.

There are probably more 'Toons that 'pass' than we realize. YOU might even be a 'Toon and not know it. If you think stilts are a reasonable alternative to walking on the ground, you might be a 'Toon. If you've ever asked a doctor to remove your LAST set of stitches while she is putting in your CURRENT set, you might be a 'Toon. If you can ride a unicycle, well.....sorry, sweet daughter. I can't help my gene pool and I swear I didn't mean to propagate the gene.

What follows is an entirely true 'Toon Family Christmas story.

One magical Christmas Eve, after returning with three kids from midnight mass, my parents tucked us in, and began their annual Santa's-Workshop-in-the-Living-Room event. The gifts that year included a three-piece aluminum kitchen set for me, with an appalling amount of tab A/slot B style construction. My brothers' gifts had some similar degree of engineering complexity, and they worked from after midnight to nearly four AM getting everything constructed, wrapped, and hung in stockings or placed under and around the tree. The beauty of the lights, tree, and gifts always far exceeded anything imagined by Martha Stewart.  My parents were the Masters of Christmas.

Exhausted, they fell into bed. Just as they were closing their eyes........drip. Drip. Drip. Drip.

It was a warmer than usual Christmas Eve. The snow was two feet deep on the roof and there was a rack of beautiful six-foot-long icicles hanging from the roof of my parents bedroom. A lake of water had developed on the roof, unable to drain off because the ice was acting as a dam, holding the melting snow in place. The icy water? Leaking through the roof, straight to my Dad's forehead. No 'Toon takes this lying down!

Leaping snarling from his bed and shoving his Christmas-pajama-clad self into big winter boots, he climbed to the roof behind our bedroom windows with a shovel and began chopping at the ice. Hearing the noise, we children arrived at the windows just in time to see SOMETHING go flying off the roof! Red suit! Santa! WE SAW SANTA!!!

We had frantic whispering match as to whether or not it was safe to go down. After all, Santa mustn't know we saw him! Our parents had always made it very clear that if Santa ever caught us spying he would leave, and take our presents with him!

While we were debating, my Dad was having a Full 'Toon Moment.

He'd fallen off the roof, of course. And he fell for the finest of 'Toon reasons. He was standing ON THE ICE. While he was chopping away, a twelve-inch section detached, and he rode those gigantic icicles into six feet of wet snow. And all the water and slush that had been dammed up behind that ice? Picture Wile E. looking up at that descending anvil. Substitute a thousand gallons of ice water, funneled directly onto Dad's head in a foot-wide stream. Take a moment to enjoy your mental picture of my Dad as 'Toonsicle.

My drenched and frozen father struggled out of the snow and ran for the house. He shivered his way into dry pajamas about ten seconds before we kids came barreling down the stairs, screaming incoherently about our Santa Sighting. 'Toons are nothing if not quick with a clothing change.

My mom simply shrugged and put the coffee on. After all, she'd been married to a 'Toon for years.


Friday, December 20, 2013

Year Three, Week Thirty-nine - Exhausted.....

It hasn't been the best week.  Babygirl made it to school only one day.  Headaches for two days, and now bellyaches for two days.  She's otherwise okay but she looks punkie.

And not so great for me, either.  Sunday evening I had a headache so severe I couldn't even move away from the TV room.  Babygirl brought me medicine.  I was up and down all night, as was she.  And in the morning my head still hurt and I was hung-over from the meds, so I called in. 

Playing catch-up after a sick day is never fun.  And the week just kept rolling bad.  Both my partners have crises in progress, and today I was the only provider in the building who knew anything about the patients (we have a pair of brand-new nurse practitioners on loan.  Our complex patients are stretching them to the max and they need me to be able to help them - while I'm seeing patients and writing prescriptions, evaluating three providers worth of lab and x-ray reports, and putting out fires of every kind). 

Administration has taken some fairly bold steps to make sure I'm not utterly overwhelmed for more than a few days.  Add a couple of holiday short weeks - which may increase rather than decrease the pressure - lord.

I can barely move. 


Saturday, December 14, 2013

Year Three, Week Thirty-eight - The Week in Review.....

Years ago when Citygirl was young, we would go to the beach each year with my older brother and his wife and kids.  He was (and is) a technophile.  He carried his video camcorder everywhere and never turned it off.  And at the end of each day we would hook it up to the TV and watch "The Day in Review."  It was extremely fun in a totally narcissistic way, not counting the upside-down shots of peoples' knees, of course.

I wasn't running a camcorder this week, and I'm rather glad I wasn't.  It wasn't nearly as much fun as a beach week with little kids. 

It started well enough, with our Make-A-Wish adventure.  But Mondays come, every week without fail, and I jumped back into the medical-records-on-computer nightmare that all of my colleagues have been enjoying every bit as much as I am.  By Wednesday morning I was brewing a migraine.  At lunch, the bite I was swallowing met the bite that was coming back up, and I threw in the towel for the day.  I went home to a head-banging afternoon.  Babygirl was home with a headache also.  Misery may love company, but the two of huddled in separate parts of the house, coping as best we could. 

I turned off the lights, put on an ear band to deaden the sound and squinted my way through wrapping a bunch of Christmas gifts.  You know your ears are too sensitive when the sound of scissors through paper and tape tearing is just to loud to bear.  I took a lot of drugs.  Babygirl and I were both up and down throughout the night.  Her room was spotless by morning. I debated calling in for Thursday, but the medication hangover wore off in time for me to function. 

Thursday evening my Mom complained of a cough, and not feeling well.  By Friday evening she was looking 'peaked' (pronounced with two syllables LOL) and not wanting much for dinner.  Hubby and Babygirl had made plans to go out for Indian food to celebrate surviving the week, so we went.  I was fully expecting to spend my night in the ER after dinner.  Never plan an ER trip on an empty stomach, I say.

Oddly enough she was feeling (and looking) much better.  She asked for a grilled cheese sandwich (okay), and this morning she looks herself.  Babygirl and I have her cold now, though.  How she can catch something FIRST when she never leaves the house is a mystery to me.

I went to bed at 10, and woke up at one AM.  By 2 I gave up and went to Wal-Mart.  I mean, why not?  I needed some things, I wasn't going to sleep anyway.... So this morning I am tired. Babygirl and I went to Aldi to finish up the weeks' shopping.  And now I'm contemplating the house cleaning.

I'm grateful that there were no major crises.  But as weeks go, it was a real hoover.


Monday, December 9, 2013


Make-A-Wish contacted us a while ago and asked if we'd like to be Wish Ambassadors.  I'm sure they've discovered over the years that people dig deeper and donate more at a fundraiser if they have a face to connect to the cause.  I spoke to Babygirl about it and she gave a highly qualified 'yes'. She doesn't want to speak.  She's not fond of having people staring at her, but she'll stand by me while I tell the story. 

A couple of weeks ago I received an invitation to represent Make-A-Wish at a fashion show fundraiser at Cornell University.  It's not impossibly far away, it's Citygirl's alma mater, and we have nothing else on the schedule.  Why not?

I bribed Babygirl with permission to wear her new Christmas Eve outfit for the occasion and we were good to go.  Despite ominous weather predictions, the roads were clear, the Christmas music on the radio relaxing, and the speech taking shape inside my head coming along beautifully.  I'd been to Cornell events before - Citygirl organized a few and Hubby and I went.  Hers were centered around meals and wine and were fairly pricey to attend.  We were surrounded there by well-to-do Cornell parents and local foodies, so I planned to tug at some parental heartstrings.

Then I saw our audience.

It turns out that FASHION is an acronym for a group of fashion students raising money for charity.  It is the brainchild of ONE student, and this was its first annual event.  Zak is an admirable young man who apparently began organizing these fundraisers while in high school, and who intends to keep on going matching fashion with charity for the rest of his life.  He got local sponsors (Ann Taylor, Urban Outfitters, Old Navy) to contribute clothing to be modeled.  He rounded up fellow students to be the models and to help with the tech aspects of the show.  He recruited two dance groups to use between lineups to add interest.  He auctioned off a date with two of the models for an extra $90.

The audience of about 200 people were all students - Zak's friends, the models' friends, and random Cornell students who were looking for a different way to spend an evening. 

Not a parental heartstring to be seen.

I listened to them talking at the fundraising table.  I listened to Zak passionately discussing the wishes of "terminal" children.  What these young people needed was vision, imagination.

With Babygirl by my side I told our story, briefly.  I explained that "kidney transplant" and "they all lived happily ever after" are not at all the same thing.  I explained the difference between "life-threatening" illness and "terminal" illness.  I told them about Babygirl's wish process, and the hope it gave us in our darkest hours. 

And then I told them about the wishes.

Learning to scuba dive to go swimming with sharks.  Becoming a princess and dancing with a real prince.  Having a dream wedding.  All-terrain wheelchairs. Paris, sweet Paris.  And they'd ALL heard about the BatKid. 

I told them I knew all about being broke - we had a major illness and a Cornell graduation all at the same time, after all - and appealed to them to not only drop money in the jar but to talk to their parents about donating frequent flyer miles as well as money.  I think I did okay.  Babygirl says I did.

It amazes me, always, what one passionate person can achieve.  I'll say it again:  I look at today's young people and I see hope.


Thursday, December 5, 2013

Year Three, Week Thirty-seven - Three Month Reprieve.....

Today was Hypertension Clinic at CHOP.  This was a new experience for us, so let me share.....

We were scheduled to arrive at 6:45 AM.  Because of a bit of fog we hit the door of the cardiology department at seven on the dot.  We were met by a care coordinator who handed  Babygirl her "passport" - a list of each of her half-dozen appointments for the day with times and locations.  We hustled through some paperwork and went to the echocardiography suite. 

There are apparently more than a few things that doctors do not know about what is normal for kids.  Part of the reason for this clinic is not only to take better care of the kids, but also to establish normal values for blood flow through arteries, thickness of arterial walls, and some other interesting data that have to do with cardiac flexibility.

So this wasn't just ANY echocardiogram.  It was an ultrasound of her entire vascular system from diaphragm to ears.  I have to remind her before she leaves for school tomorrow to check and see if the ink marks on her neck are gone yet.

After those two studies, we hiked off to the lab.

Usually we are the very first people there in the morning.  We get our orders from Nephrology at 7:45 AM and arrive at the lab just before it opens at 8.  But THIS time, we were an hour later than usual.  There was a little backlog.  There was a shortage of phlebotomists.  And there was a screamer being worked on when we arrived.  The screaming (toddler, by the sound of it, and a remarkably articulate one) went on for some time.  Since Babygirl still needed an EKG before seeing the heart and kidney doctors, I told the care coordinator to take her back and get it done.  It was a good decision.  The phlebotomist had just cleared the backlog when she returned.

We arrived for our 9 AM appointment with the cardiologist at 9:20.  Since nephrology was supposed to see her at 9:30, they snagged her, grumbling mightily about the lab hold up and the 'way things USED to be done.'  I sympathize.  The nephrologist du jour was one we rarely see, but he is the one with the passion for fixing high blood pressure in kids, so we got a real vision for his goal:  Establish measurable outcomes and standards for blood pressure management in pediatrics.  As a physician I have to say that this is a much-overdue thing.  I have noticed over the years that most of my students have NO idea that although a blood pressure of 130/80 is okay if you are sixty, it's dangerous hypertension if you are, say, eight.  And frankly, no one seems to know what to do about it even if they know it's a bad thing.  (Yeah.  There's something you really didn't want to know about your kids' docs.)  As obesity and adult-onset diabetes rates rise in children, so will hypertension.

Cardiology basically seconded everything nephrology had to say, but this young and lovely lady did more to encourage Babygirl to work toward a healthier lifestyle in ten minutes than most of the other docs have managed to do in two years.

Then we enrolled in a new study about the cognitive effects of chronic renal disease in children.  It is a one day psychological and cognitive assessment that includes an MRI of the brain.  Babygirl originally flatly refused to consider this unless they would use last year's MRI, which they wouldn't.  But then, she asked me for the Windows Surface 2 for Christmas.  I priced it out, and the answer is NO. 

Suddenly the possibility of a research stipend became much more appealing.

If she participates, she gets $150, free breakfast and lunch, and a $20 gift card, which will go a long way toward saving up for that computer.  I, of course, get to drive.  Since the study will be timed to coincide with our next visit, I can't really say it's costing us more than usual.

And the next visit?  March. MARCH!!!  Her labs were all as close to perfect as we'll ever get.  That's MY Christmas present.