LifeAfterDx--CGM Chronicles

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012

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Location: New Mexico, United States

My name is William (a.k.a. “Lee,” which is short for Liam, which in turn is short for William). I'm an Author, Type-1 Diabetic, Pumper, Diabetes Educator, and medical technology critic. I'm 47-years-old, and father to nine-year-old Rio and husband to Debbie, a Type-2. I suffer from impaired hypoglycemia awareness; which means I can’t feel my hypos. Scary stuff. I’ve been as low as 35 without a whisper of a symptom. LifeAfterDx was originally started to chronicle the early Continuous Glucose Monitoring (CGM) technology. I was the 30th person in the United States to wear one of the original Guardian RT units. With the exception a few brief, terrifying months, I've been continuously hooked up to one system or another ever since. After I had said all I felt there was to say about CGM I branched out to other diabetes technology and politics, and the continuing adventures of Rio.



Wednesday, February 15, 2012

The BIG event

White.

Everything is white. Pure. Almost blinding. No texture. No shape.

Just white.

“Walk towards the light,” a female voice calls out to me from the distance, her tone lyrical. Musical. Beckoning. Then I hear a delighted laugh, “Close you damn eyes, Wil. The light’s going to blind you.” It’s one of the nurses, teasing me.

My face is covered in a sterile field. A surgical drape with a small hole in it for the doctor to work. My eyes are coved by the soft textureless paper. My face is numb from the local anesthesia. I’m feeling very relaxed. This must be what it’s like to float in one of those sensory isolation tanks.

There’s a vague sense of pulling and tugging. But I have no real idea what’s happening. Is he just starting? Is he half way through? Is he almost done? I have no idea. But he’s sewing up my face before I was even 100% sure that he had cut it out yet.

Three stitches does it. Plus some very expensive medical-grade superglue called dermabond, to help hold my face together and keep the cut from bleeding.

And it’s over.

Just like that.

Done.

Well, fuck. That’s kinda anticlimactic.

Of course, if you think about it, in a perfect world, all medical procedures would be anticlimactic. Next, I’m sitting up on the gurney. Joking with the staff and feeling vaguely like my face must look like the Michelin Man’s. I don’t want to be overly vain, but I’m dying to see what I look like. Last night I trimmed my beard further down my jaw than ever before in my life, and tighter to the sides of my mouth to give the doctor the required quarter inch cutting room around it.

I ask Rio, Do I look more like a pirate or a highwayman? He turns his head to first one side, then to the other, considering carefully. “Highwayman,” he declares, definitively.



Stolen from Laura L. Cochrane

Oh. Don’t get me wrong.

I’ve seen the highwayman beard.

But I want to see my new highwayman scar. My face is so numb I have no idea if the cut is big or small, up or down, left or right. The doctor is very satisfied with his handiwork. “You can keep trimming your beard this way if you like,” he tells me. “There’ll be no trace of the job when it heals.”

Wil Dubois. Author. Educator. Highwayman.

Time to order new business cards.

But before I get to meet my new face, I get to meet it.

I roll the jar of clear fluid around and around, peering through the slightly milky plastic. It is also white. But not a clean white. It is an ugly white. Strange. Alien. About the size and shape of one of Rio’s baby teeth. Just-for-in-case; the whole thing is slated to go for a second biopsy. I don’t know if we’re being extra-careful, or if the doctor saw something he didn’t like when he took it out. This is not a man you’d want to play poker with. His face gives nothing away.

My face is feeling more and more like a balloon now, even though it is technically baby-tooth smaller, I bum a makeup mirror from a nurse. The incision is smallish. Clean. Simple. The stiches short and neat.

Yeah.



















Very highwayman like.



Monday, February 13, 2012

A post card from the middle-of-nowhere

Rio and I were playing with fire.

Or was the fire playing with us? Funny thing about fire, you can never be sure.

Oh. I guess I’d better give you some background. We live in the middle-of-nowhere. No really, we do. Google middle-of-nowhere and you’ll see a picture of our house. Well, somewhere in the pile of 24,700,000 Google hits for middle-of-nowhere you’ll find it.

Living in the middle-of-nowhere has its good points and its bad points. You cannot, for instance, have a pizza delivered at 11:30 at night when you live in the middle-of-nowhere. Nor can you get a cup of Starbucks without driving 83.7 miles, unless you brew it yourself. On the upside the view from the middle-of-nowhere is a view of everywhere else. And that’s a pretty awesome view, indeed.

Our cozy (code word for small) kitchen and dining room has one wall of glass looking out over mesa lands with views of the distant Sangre de Cristo mountains. Well it does during the spring, summer, and fall. Now in the winter it has a view of black. Because, when you live in the middle-of-nowhere the sun has already set by the time you get home from work or school in the winter.

So in the winter time, we try to bring back some life and warmth to our table by burning candles at dinner. Right now we have this iron rack that suspends three colored glass vases that hold tea lights.

After dinner one night a month or so ago, as we were putting out the candles, Rio and I starting talking about fire. I explained to him that like us, it breathes, eats, produces energy, and grows.

Do you think fire is alive? I asked him

“Hmmmm….” said Rio, as he thought long and hard about it. “Maybe so.”

So last night, as he blew out each candle in turn, I heard him say:

“Goodnight.” Huffff.

“We’ll light you tomorrow.” Huffff.

“See you at dinner.” Huffff.

Yeah. I know. That story has nothing to do with diabetes, and pumps, and CGM.

Or does it?

It is our gear that lets us live to share moments like this one.

Oh, and speaking of gear… bring your ear over closer. Shhhhhhh! Top secret! I can’t tell you any more about it today, but very soon I’ll be posting more. A whole lot more.

We’re going to have a brand new piece of gear coming to live with us.

And you’re going to want to read all about it.

Tuesday, February 07, 2012

It now has a name

It is a neoplasm.

Now, you may not know this, but tumors, masses, and neoplasms are all different words for the same thing. They, in the most basic English, are abnormal growths of body tissue. Neo from the Greek for “new” and plasm from the Greek for “growth.” Neoplasm simply means “new growth.” And neoplasms come in two flavors: Black Hat and White Hat.

Black Hat neoplasms are malignant. That means cancerous. Which would be bad fucking news indeed.

White Hat neoplasms are benign. That means non-cancerous. Which would be good fucking news indeed.

My pet neoplasm, according to the pathology report, is wearing a microscopic White Hat. It is benign. Harmless, beyond being ugly. But still, it has to go. You know, before it decides to change sides and become something else. Oh, and I get to choose its method of execution.

I can have it shaved off with a surgical razor. But it might grow back.

Or I can have the little bastard frozen off. But it still might grow back.

Or I can have it excised. Cut out roots and all, once and for all, at the cost of a small scar.

I’m already feeling the rush of joy that James Bond villains must get when planning the super-spy’s demise.

Monty, I choose door number three.

Wednesday after next, right before lunch, it has a date with a scalpel.

Monday, February 06, 2012

No news is know news

Still waiting...

Sunday, February 05, 2012

What? Me? Worry?

I really wasn’t worried. No, I wasn’t. I swear.

Not until all my loved ones started freaking out.

Not until all my doctor friends started calling and emailing with their “I sure it is nothing to worry about… unless… well unless it’s (fill in your favorite long multisyllabic scary-sounding Latin word here). Then you’d be in trouble… But that’s not too likely, so I’m pretty sure it is nothing to worry about…”

Thanks guys.

You know that fear is highly contiguous, right?

But even though I wasn’t really worried about it, apparently my body was. And I know that because of this:

Yes another old friend has come back for a visit. That’s not a really, really, really retro iPod I’m wearing. It’s a TENs unit. In case you’ve forgotten, that stands for Therm… No… Trans… well, fuck, I can’t remember what it stands for and I’m too lazy and in too much pain to look it up right now. But it’s an electrical current generator that attaches to pads taped to your body that then send electricity into your bod to overload the electrically-powered nerve endings near the site of an injury so the pain signals to your brain get scrambled. It’s really the high tech version of smashing your hand with a hammer to take your mind off the pain in your foot.

But it does work.

Long-time readers will recall that about a year and a half ago my back got so jacked up that I wore a TENs 24-7 for months.

I hadn’t had any trouble since then until today. Today, reaching for a box on a shelf I felt that OHSHIT feeling you get just before your back goes out. I imagine it must be the same feeling you’d get if you lost your footing and fell off of the Golden Gate Bridge. Yeah, you’re not hurting yet (as you are simply falling through the air) but you know you’re going to be hurting any secon--- ARRRRRRRRRRRRRGGGG.

Once I could breathe again, which seemed like hours, I got myself to a wall. Leaning on a wall is a great way to keep from falling down. About an hour later I got from the wall to the medicine cabinet, washing Flexeril down with red wine—not recommended, according to the bottle, and I’m not to operate heavy machinery, either. It’s OK, I’m pretty sure word processors aren’t really considered heavy machinery. Then I chased the Flexeril down with 800mg of Ibuprofen for good measure.

You would think I’d be feeling no pain, but you’d be wrong.

So I broke out my old TENs unit; it’s pads, tape, wires, and connectors looking like a foreign language that I should know how to speak, but just can’t quite grasp. It had been a while since I had used it. It took me a while to remember how to worked.


Further proof that when it rains it pours.

Anyway, sometime this next week I should get the results of the biopsy back. It will probably prove to be nothing.

But I wonder… how long will it take for my back to recover?

Thursday, February 02, 2012

Apparently I’m a jackass and a bonehead

As of last night, all the women in my world are mad at me. By the end of the day today, no doubt, all the women in the entire world will be mad at me.

Why, you ask?

A lapse of biopsy etiquette on my part. You see, yesterday’s post was damn near real-time. I started writing it immediately after it happened. The punch biopsy was just before lunch and my cheek was so numb I was afraid I’d bite myself if I started eating. And I wanted to capture the smoke-snake image in words while it was still dancing across my retina.

The entry done, minutes before my first afternoon patient, I quickly posted it to the internet and got on with my day.

I did not, however, call my wife first.

Or my mother.

Or my sisters, my niece, my mother-in-law, my gal friends, my female editors, my lady colleagues, my woman associates, my girl fans, my mistress, or my maid. OK, I made up that last part. I don’t have a maid.

So I’m a bit unpopular right now.

But this does pose a legitimate question of medical ethics for patients. Who do you tell what, and when do you tell them? Right now we know nothing. Why worry people? Of course, blogging about it lets the cat out of the bag and isn’t helping my argument… I confess, I always forget that many of my loved ones read my blog. My bad. But this is still a question patients have to wrestle with every day. And one I don’t think that we, as a society, talk about enough.

Now back to all the pissed-off women. In my own defense, it’s not like Debbie was totally out of the loop like the time I had all the symptoms of a heart attack and drove myself to the ER only to come home hours later with a bouquet of flowers, pills, reams of instructions, and missing patches of chest hair from the EKG. This time she was the one who insisted that I get a medical opinion about it.

And it’s not like she stumbled across the post by accident. I sent her an email telling her to check it out. I guess she expected the doctor to say it was nothing to worry about. It never occurred to her I might be getting a same-day biopsy.

She’s freaking the fuck out. And she’s pissed. And she’s worried. It would be kind of sweet if it didn’t come with all the insults and foul language and flying dishes.

Me? I don’t know what to feel. But I do know I don’t like one other aspect all too common in modern medicine: waiting. Now, you all know I have a well-documented (but currently medicated and controlled) eBay addiction. But eBay stresses me out as much as it makes me happy. Waiting to see if I’ve won or lost can put me in a near catatonic state. And even if I win, I hate waiting for the damn delivery. If I want something, I want it now. Not in two weeks. Not next week. Not tomorrow. Not this evening. Not in an hour. I want it NOW.

Of course in this arena of medicine, waiting is just a fact. There is no speeding it up. And there is no point in letting your mind run down dark alleys while you are waiting. It will be what it will be, and I’m not thinking about it until I know what it is I need to think about.

But to preserve my sanity, like avoiding eBay, I am so avoiding entering dermoid cyst or melanoma into a search engine.

At least until the biopsy report comes back.

Instead, today, I’m spending my time at online florists. Sorry ladies.

Wednesday, February 01, 2012

Because God thinks diabetes isn’t enough for me to write about

Blue-grey, the smoke wafts upwards into the brightly lit concave mirror, a long thin snake twisting round and round, upwards—like a snake charmer’s cobra. No flute here, only the hissing, snapping, crackling noise of the surgical cauterizer. There is no pain, but the smell is awful. The smell of burning flesh.

My flesh.

More hissing and crackling. More smoke rising up into the operatory’s mirrored light above me.

There was more vascularization than expected. The damn thing didn’t want to stop bleeding after the punch biopsy. That means it has it’s own blood supply, what ever it is. I have to wait a few days or a week to find out if it is just a garden variety dermoid cyst or a melanoma. It has features of both and yet doesn’t quite look like either.

The stupid little thing was right under my nose all along. Well, under and to the right, actually. I’ve had a Marilyn Monroe beauty-mark mole on my cheek since I was a kid. My beard hides it, so I never gave it any thought for years. Then two nights ago I was resting my face in my hands (exhausted, not crying) when I felt the lump.

What the fuck?

Off to the bathroom. A good light and a good mirror. Pulling my graying beard hairs aside I find my mole has transformed. No longer chocolate brown and flat, it’s angry red. Poufy like a party balloon. Bigger. Edges not quite regular, not quite irregular.

Ut-oh. This can’t be good.

First thing this morning the doctor studied it, “Well, this has to go,” he stated flatly after looking it over. “But we need to be smart about it.”

Smart, in this case, means knowing what it is youre going to cut off, before you cut it off. So he did a punch biopsy, cutting the edge off of whatever it is, removing a small three millimeter core of flesh, which, as I write this, is floating serenely in formaldehyde in a plastic sample jar on it’s way to the regional medical center’s lab. There it will be sliced impossibly thin, stained with various dyes and stared at under microscopes. A clinical police lineup.

Then we’ll know what it is. If it’s harmless, it still has to go, but can simply be cut off my face with only temporary damage to my beard. But if it’s… umm… you know… less than harmless, then my life will get more complicated than it already is.

But at least I’ll have a lot to write about. But for now, the waiting begins.

Tuesday, January 24, 2012

Smoke detector batteries

Damn. Ambushed.

I didn’t even feel it coming. Of course. I never do.

But where was the frickin’ DexCom? It’s supposed to prevent things like this.


47 mg/dL flashed at me from the face of the Presto Meter.

Hello low. I haven’t seen you for a while.

I don’t know if it was the surprise, or the lack of sugar reaching my brain, but I just sat there like an idiot, staring at the number.

Rio leaned over to look at the meter. “Hey, there’s only two digits!” he said.

Then he jumped up, shouted “Hooray!” and bolted from the room. About 30 seconds later he came bounding back in waving a glucagon emergency kit, “I’ve been dying to use one of these for years!”

Fucking Christmas in January.

When Rio turned five I taught him how to use a glucagon ER kit, and he’s been dying to stick me with it ever since.

Lucky for me, his mother intervened first, with glucose fluid. Then a brownie, then potato chips (we can argue about optimum choices some other day). Then a bowl of cereal. Then crackers. The low was a stubborn bastard. I’m not sure how or where it came from, but it took almost 100 carbs to get my head above water again. And poor Rio didn’t get to use the glucagon.

Good thing, as it turned out.

About an hour later, my brain functioning again (at least as well as it ever does), we decided to review the somewhat obtuse inject-mix-pull-inject process of using the ER kit. That’s when I noticed the expiration date.

Oops.

My break-glass-in-case-of-emergency to save-my-ass medication had expired.


Two years ago.



Sunday, January 15, 2012

Quick and easy diabetic meals

Sysy of Girl’s Guide Fame emailed me the other day, wanting me to join in on an email-based “collective, constructive, and tasty” diabetic recipe exchange.

(((groan)))

I love Sysy, but I hate these email things.

The instructions said it should be something quick and easy that you make when you are short on time.

I actually have only one recipe that fits the bill:

Open microwave, insert box.
Check nutrition facts label.
Multiply carbs by severing size on box and enter result into pump.
Wait for both sets of beeps (microwave and pump).
Serve and enjoy.

Sunday, January 01, 2012

Another year, another copyright

© 2012 William “Lee” Dubois

...and so, my friends, we begin our 8th year together at LifeAfterDx...