Showing posts with label pheochromocytoma. Show all posts
Showing posts with label pheochromocytoma. Show all posts

Tuesday, June 15, 2021

Pheochromocytoma on TV

I have a voice message from my second husband Ron saved on my phone.

He left it a few years back, before dementia completely took over his mind and before he went into the nursing home (the photo below was before COVID).

I was suprised that, when he'd forgotten so much, he remembered this. Here is the message.

"Just heard something I wasn't expecting on TV. He (Hawkeye) was trying to get hold of his dad. He heard his Dad was sick. He finally got through and some other guy asked him, 'How are you doing?"

And he said, Hawkeye said, "Well, they found some kind of a tumor. They're not sure what it was. So they opened him and found it was a pheochromocytoma."

Then Ron said, "Whoa! I know what that means."

I did a quick Google search before I finished this post just to see how often this very rare tumor has appeared in the media, but I could only find the two references: one that Ron caught, and one that I caught.

Here is a clip of the episode Ron saw. The mention of pheochromocytoma is at the the 11:30 mark.

https://www.dailymotion.com/video/x6tnwg1

Pheochromocytoma is also the second disease mentioned in the "Top 5 Rarest Diseases | House M.D."

However, we did laugh our way through this episode about a prisoner who gets strong and aggressive due to excess adrenalin.

It's not like that. All those excessive catecholamines make you sick, sick, sick. You won't have enough energy to pick fights.

Still, it was cool that it got a mention on House M.D. - with even the other "doctors" on the show coming back with, "But it's rare."

That's what the doctors told me when I told them I thought I had one. My comeback was, "Someone has to have it."

That someone was me.

Which is how Ron knew about it. I'm still thankful today that I tracked my symptoms and shared my findings with the right doctor (several before him did not believe me when I said I had this). 

Pheochromocytomas are rare but treacherous catecholamine-producing tumors that, if not diagnosed or appropriately treated, will almost invariably prove fatal.

Here is a link from the House M.D. episode.

https://www.youtube.com/watch?v=0ZVd0QKvJo8 



Monday, June 15, 2020

10 Surprising Facts About Me

A rare piece of self-indulgence.

For those who'd rather here about my writing updates, a quick summary of this weekend: some reading, some walking, good progress on both The Phoenix and Lycanthropic Summer, and some editing for two clients (first round on a book of short horror stories and third round on a literary novel).

Scant progress on the short story for a special project.

LOTS of great interviews set up for today for Herald-News features stories.

Have a wonderful Monday! :)


10 Surprising Facts About Me


1) I have never colored my hair.

The gray is in there...somewhere. And will eventually overtake all the brown. I'm cool with it.

2) I eat the same thing for breakfast every day.

Banana, cereal (uncooked oatmeal, wheatgerm and reconstituted powdered milk), half a cucumber, water, dark roast coffee

3) My childhood pets were goldfish.

Even if I wasn't allergic to everything else, my grandfather raised goldfish. He had a beautifully landscaped pond in his backyard on Parnell in Chicago (before it was chic to have such things) and built a 90 gallon tank into the floor of his basement.

He griped about the kids who crept into his yard and stole his fish by carrying them away in empty coffee cans ("Don't they realize you need a gallon of water for every inch of fish!" he'd fume) and surprised me on the Christmas when I was nine (the first year I realized Santa Claus truly didn't exist), much to the annoyance of my mother. I named every fish.

4) My favorite activity in the whole world is reading.

The real reason why I write. Writing is work; reading is heavenly. I have to make myself write every. single. day.

But I love great stories. So I keep pushing myself to write one.

5) If you are talking to me on the phone, I am probably walking.

Unless I am interviewing you. If not, I am up and moving. As soon as the phone rings, I am on my feet.

6) I was one of those weird nursing moms who nursed their kids for a long time.

Average weaning age: 4. And lest you think it makes kids "dependent," my six kids are some of the most strong-willed, opinionated, independent group of adults you'll ever meet.

7) I'm allergic to the world.

Real allergies, the stuff that sends people to the ER and and for allergy shots for a long time. Too many to mention all here.

And I have chronic hives, for which I've been prescribed off-label amounts of antihistamines. And asthma. I cover up in the sun or I wind up in welts. I layer up in the cold or I end up in welts.

Molds, trees, grasses, animals, peanuts, sunflower, several antibiotics: the list goes on.

8) I'm alive because I figured out my own rare tumor.

It's called a pheochromocytoma.

I figured it out by tracking symptoms and my blood pressure and glucose levels with home monitoring systems. The endocrine team was impressed at Mayo Clinic in Rochester, although it was pretty scary to have a semi circle of these professionals surround your bed because they're concerned of how sick you are. Especially when you have little kids back home.

This will kill you unless it is discovered and then removed by someone who knows how to handle this tumor, which is a landmine of lethal catecholamines.

Read more about this rare and dangerous tumor here.

9) My husband and I remodeled parts of our property to support a youth group.

Our church had no space for one. So we spent upwards of $30,000 to convert two garages, a wooden shed, and the built another structure to create space for a playroom, work shop, game room, and movie room complete with a state-of-the-art TV (at the time).

We called it The Higher Ark and we ran it from 2005 to 2009 until my husband (who wound up with early onset dementia) was too ill to continue it. He lost his job the following year, and we lost our home (which his parents built) in 2013.

We are now divorced, and he is in a nursing home. But if he was proud of anything in his life, it was The Higher Ark.

10) In 2006, I had a Grammy award-winning singer perform my backyard.

My favorite Christian band is Petra. Its lead singer John Schlitt (all my husband's idea) hung out with the youth group and their families on the feast day of St. John the Baptist that June.

We had a pig roast and John performed karaoke style on our back porch. We have the DVD and newspaper clippings to prove it. The next day, he attended church with us and gave a short performance at our church.













Tuesday, October 16, 2018

Unusual Motivation

Most of us need an inner cattle prod from time to time, and I'm certainly no exception.

I love my job and work a lot of hours at it. I have a large family, and I love spending time for them.
Which leaves not huge amounts of time for working on my own version of War and Peace.

Here's my "inner cattle prod," summed up in a word you've probably never heard: pheochromocytoma

This pesky thing nearly took me out back in 2002. Fortunately, I prevailed, and it did not. Mayo Clinic even sent me a surprise photo of the post-surgical enemy before it was chopped to bits, and I got the satisfaction of shaking my fist at it and exclaiming, "You lost, sucker!"

However, it can bite back. Meaning, it can return.

If it bites back, it bites harder because that generally means malignancy. The only way to keep pace with it is yearly screenings for life, and, trust me, I am compliant. And the screenings have always been normal.

Until this past spring, when the values came back slightly abnormal.

It was a sobering, sobering moment. 

But not a horrible moment. My endocrinologist decided to redo the test in six months as opposed to 12, unless I had symptoms (which I have not). And I decided to delay panic until I had a solid reason for it.

However, knowing circumstances could be get interesting this fall, I decided to use vacation time this year to churn out the rest of Before the Blood, just in case, well, you know. In case life got busier dealing with "it."

And scheduled my annual physical to match that schedule. 

I am happy to report this second screening was completely normal. However, I am officially prediabetic again (I was out of those woods for two years). 

My yearly appointment with my endocrinologist is the day before Halloween (how appropriate). I have a list for her because I'm ferociously attacking the prediabtes.

But unlike many of the characters in my BryonySeries, I'll be hanging around on the life side of the grave for awhile. Or so it appears.

And the prequel is written and in editing. YAY!







Illustration by Matt Coundiff for "Visage." Follow him at www.facebook.com/artbymattcoundiff