Category Archives: Crisis DuJour

Screwed, Blued, and…

TATTOOED!

It’s official. I now have my three tiny blue dots in place and next Monday I start my radiation treatments.* I’d like to say I was totally bad ass when they inked me, but I suspect yelling ‘Ow’ each time they poked me diminishes my street cred.

The weirdest thing about having breast cancer is how absolutely every appointment involves flashing my boobs at someone. Or several someones. Usually in a very chilly room. (Things get kind of pointy, is all I’m saying.)

Radiation, for those of you who don’t know, apparently requires the patient to lie flat, with your feet rubber-banded together, while being hugged by a personally-crafted, bean bag cosy, with your arms resting over your head, as if you were posing in the nude while draped on a fainting couch a la Rose and Jack in that famous scene from Titanic.**

“The last thing I need, is another picture of me looking like a porcelain doll.” The line nobody remembers because they are too busy waiting for the robe to drop.

I’m lucky, I’m not too terribly body conscious, so it isn’t such a big thing to flash the sisters at strangers. But it was pretty weird to do it Monday while contorted into the oddest angle and strapped with VR goggles and a snorkle and noseplugs. I kid you not. I stole the following image from a site describing Breath Holding as a method to avoid damage to the heart from radiation.

This doesn’t feel awkward at all…until your boobs are uncovered like a cold plate of sunny-side up eggs.

The technicians do their best to maintain a patient’s dignity, but when you’ve got to take pictures of boobs to arrange for the perfect angle to radiate while avoiding the heart, lungs, and chest wall, well, things are exposed. Floppy things. Things that look better by candle light…after everyone has had sufficient alcohol to limit visual acuity. I suspect offering to do shots with the staff beforehand would be frowned upon.

I’ll need 16 sessions, or about three-and-a-half weeks, for about 30 seconds of radiation exposure at a time. That’s it. After that, I’m done. And life, presumably, goes back to normal. (With the exception of taking Tamoxifen for five to ten years, but I digress.) I did try to ask a serious question or two about the levels of radiation I would be receiving, but got caught up trying to understand the unit of measure the technician kept using.

“We’ll be dosing you in a measure called ‘CentiGrays.'” Said the young man who was trying to simplify things so I’d understand, but failed to grasp how far he’d have to dumb it down.

“Centigrade? Like temperature?” I ask.

“No, CentiGrays…” He draws out the pronunciation but I don’t really get it until I go home and look it up. “It’s different from measuring natural sources of radiation like gamma rays or neutron radiation. It measures man-made radiation like that produced in a nuclear factory.”

“So, how many Chernobyls is that?” I attempt a joke, but he is very earnest about his job.

He explains some about the exposure for that day’s radiation in scanning me for the coming treatments as being equivalent to about 10 minutes of sunshine. The technician was very comfortable talking about all of these details while adjusting the equipment and getting things set up for the breathing test. He did pick up on my joke though and turned it into a teachable moment:

“Actually, a lot of what we know about treating cancer comes from the results of studies of people who survived nuclear disasters like Chernobyl and Fukushima. We couldn’t test in ordinary research because, well, obviously you can’t deliberately radiate people to find out how they will be affected. But we could study the survivors to find out how exposure and absorption of radiation affected their outcomes.”

I thought about what he said as the machine, weirdly stained year’s earlier by an insulation material, churned. It produces a loud sound to accompany the whirling ring of metal that spins with dizzying concentric force. “This must be what it sounds like as you are sucked into a jet turbine!” I thought.

I lay as still as possible, eyes blinded by the blacked-out vr goggles; the table sucked me into the spinning vortex and my body was exposed to who-knows how many centigrays of radiation so that we could prepare me for the doses I would need to irradiate any missed cancer cells lurking in my breast. I took a weird comfort from the knowledge gained at the expense of people who survived nuclear fallout. Maybe someday, someone will benefit from the treatment of our current practices and eventually, cancer will be a thing that used to happen to people. Back in the olden days.

After the scans and the fun-fun tattooing, I asked the tech a final question. During our chats he’d confessed that he used to teach football while he was training to become a radiation specialist.

“Which is harder to do? Working with cancer patients or teaching boys football?”

After a moments thought, he said, “Working with kids, definitely. They found out I was working with breast cancer patients so they’d ask questions like, ‘Do you see boobs all day?’ They’d ask about that a lot!” His voice is equal parts amused and appalled.

As I was leaving, he handed me a package. “This is for you.”

I peak inside and am slightly flummoxed. There is a waffle weave robe looking like something from Star Wars’ central casting wardrobe.

“So, I’m becoming a Jedi Knight? Does this make me your Padawan?” I eye him, wondering if he will get the reference.

“Just call me Obi-Wan.” He says with a straight face. But then he grins and opens the door to let me out.

I laugh as I leave. This more than anything else I’ve heard today relaxes me. I know I am in good hands. The force is strong with this one.

Asterisk Bedazzled Footnotes:

*I DO NOT NEED CHEMO! Woo Hooo! Whoop it up folks. No chemo. No nausea. No weight loss… (Hmm, well, you can’t have everything.) It’s only a shame that I cut all my hair off before finding out I didn’t need chemo. Funny that. Still, I’m rocking the pixie cut happy to avoid the chemo dragon.

**No, not the “I’m the king of the world” scene…no, not the sweaty-steamy-hand-flattens-against-the-car-window scene…the naked on a couch “I believe you are blushing, Mr. Big Artiste” scene. Believe it or not, I had to watch the YouTube link twice to find a memorable line. Apparently they didn’t waste time creating dialogue when they knew nobody would be paying attention to what was being said.

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Think Pink

Right after finishing GISH, Kiri took a tumble in the hallway. She wrenched her ankle, her knee, and her hip. She cracked her head against the wall. She went camping and got vertigo. Obviously she’s under a curse. (Actually, this might explain more than a few things wrong with her…) Join her internal debate team in figuring out the cure!

Continue reading Think Pink

Boob Job

I’m finally getting around to taking care of a small matter of imbalance. It seems I’ve been a bit lopsided lately. Leaning a bit to the left, if you will. Turns out there’s a reason for that! With the news the doctor gave me, I’ve decided to go ahead and have some work done.

I don’t have all the details yet, but I wanted to keep you abreast of the situation; I’m having a little corrective surgery. Before you panic and start picturing me as a centerfold model in the next AARP circular. It’s nothing that drastic. I’ve just reached an age where the fun-fun mammograms I’ve been having routinely for decades have finally paid off. They found something worth looking for.

To be honest, I’ve been waiting for something to happen for a while. Bad news comes in threes, and after the tree killed our roof two summers ago, and last year we experienced the dubious pleasures of salmonella and the criminal justice system for minor children, I had the feeling the Bad Sh*t Happens Universe wasn’t finished with me. The trilogy was yet to be completed.*

I go through a few more medicinal hoops, ring a few more lab test bells, and the doctors schedule me for surgery in a few weeks. Now all I have to do is tell everyone I know the good news.

In a manner that suits my personality…

I want to have a last hurrah before picking my son back up from camp. I send out a hurried request for a Girls’ Night Out. Friends join me at Noto’s Restaurant on the beach. It’s insanely busy and loud, but has a gorgeous view of Lake Michigan. We chat about everything–which includes someone introducing me to a term I’ve never heard of before. The friend mimes pulling an imaginary peanut M&M from her generous cleavage, saying, “Hashtag: Boob Snack,” and pretends to nosh on it. This seems like a great segue for my announcement.

I order a desert appropriate to the occasion. While handing out our choices, the helpful waiter, Chris, makes the mistake of asking, “So, what’s the big reveal?”

Bodacious Babe Drops the Bombe on the Beach!

In the spotlight, holding up my mounds of ice cream with cherries, I blurt. “I have breast cancer!”

In the appalled silence that follows, the waiter escapes, and I hurry to explain. “It’s really, really small! It’s so small that finding it was very lucky.”

It’s like a micro-tumor. Only about 5-6 millimeters. And today I learned that it is moderately slow growing and is responsive to hormone therapy. I got a grade of Stage 1-A. Or as that doctor put it,”If you have to get breast cancer, this was the best kind to get.”**

Hugs are given and I feel warm and fuzzy, especially after the waiter comes back to tell us he comped me my ice cream! A friend says we should go out more often…and I agree, adding, “We can take turns being the person with cancer to snag a free desserts! Hashtag: Boob Snack!”

We leave the place cackling like mad women and tromp to the nearby beach to take selfies in the sunset. It was the best end to a day a girl can have, surrounded by loving, laughing ladies.

That’s the news, everybody. I go under the knife on August 20th. And while I appreciate thoughts and prayers, I’m even more appreciative of thoughtfulness and practical help. Which leads me to my second bit of news.

Before any of this happened, I signed up to take part in something called GISH, an acronym for the Greatest International Scavenger Hunt (the World has Ever Known) which starts JULY 27th. I’ve never done it before and, from what I understand, I will be performing acts of charity while dressed entirely in cheese, or some other wild suggestion, created by a team of very disturbed/imaginative people.

This brings me to you…my adoring friends, my extended family, and wacky Chicago fan club! (Please note the use of the Oxford Comma per your request, K, J, and MJ!) I hope I may call on you all in my hour of need. If I require someone to go out, dressed like sasquatch in a tutu, to serenade strangers on a street corner while playing a stringed bass (the fish, not the instrument) I am totally playing the ‘C’ card and asking for help. It’s either that, or you get to mow my lawn for me. You decide. But, I’m totally milking this cancer thing for all it’s worth. Consider yourself warned.

Tomorrow I get the kid back from camp. So, if I miss your kind words, know that I will look forward to reading them once life gets back to normal. For a given value of normal equal to infinity plus or minus the deviation of the norm over pie.***

Asterisk Bedazzled Footnotes:

*The third movie is always the one where the hero wins in the end, right? So, it’s all good.

** Unless one could be diagnosed with unnaturally young and perky boobs after 50? It could happen. Right?

***This is not a typo. MMmmmm…PIE!

Divisible by Love

As my favorite tv show—The Big Bang Theory—comes to an end, it wrestled recently with a surprisingly feminist sub-plot: whether or not a woman should want to have children and what it means if she doesn’t. The series frequently pokes fun at parenting including the ambivalence surrounding having kids. Perhaps I have laughed a little too hard at some of these jokes, or maybe I appreciate that someone had raised a question that bothers me in my own struggles with motherhood*.

Continue reading Divisible by Love

Mulan-ing It Up and Deciphering Pernicious Plumbing Portents

Mulan on Rooftop
Definitely Stolen Image…Come on Disney, let me have this one!

In science fiction/fantasy stories, when the heroine has pissed off the gods or broken the ancient talisman of her people, she can go on a quest to redeem her honor. Sure, she may have to crop her hair and dress like a boy to defeat the Hun army…but in the end, it’s worth it.

She returns with the seal of the emperor and is held up as an example of once-in-a-lifetime courage and fortitude. At the very least, she is welcomed back home with cries of “Huzzah” or a marriage proposal.

At what point does our heroine realize that she is in an epic battle for her existence?* Maybe to her it just seemed like a lot of bad luck rolled up on her at once?

I ask this question, in truth, because I think I missed a giant clue along the way.

Or I’ve defiled a temple somewhere and the gods are angry.

I’m not entirely sure when it happened.

But I think it started with the toilet. Continue reading Mulan-ing It Up and Deciphering Pernicious Plumbing Portents

Happy Lousy Valentine

Pick on You to Be Valentine
Pinterest: home of the most disgusting things you can Google.

We were introduced by a friend.

She didn’t know you would be so clingy, so demanding.

Such a total leech.

Sucking the life out of me.

But when you started in on my kid, that was it.

It was time for you to go.

It wasn’t easy.

You didn’t want to leave.

It was clear.

You had to die.

Stuck home on a snow day, I’m Googling ways to end you.

It wasn’t enough to get rid of you.

I had to totally erase your existence.

Clean anything you’d touched like a literal plague.

Boiling all the sheets was easy enough.

But trying to get a kid to sit still, while I tore your influence away one painstaking strand at a time?

Just awful.

Everything had to be examined.

All the lies and denials.

It was a total nit-picking nightmare.

Kiri Louse 2

I went to a specialist.

We went over everything.

Talked about how you wouldn’t let go.

How I just wanted to cut you out of my life so badly I was willing to get rid of anything you held dear.

“Just do it.” I told her. “Quick, like a band-aid. I’ll close my eyes and think of Sinead, Sean, and Shaquille. They’ve made it work for them.”

She talked me down from the nuclear option.

Getting your hair done is usually a calm, soothing experience.*

But getting rid of you was not.

With every stroke, it felt like I was being pulled in two.

As she scorched my tresses in thirty-second blasts, I visualized you frying until your little head popped.

I imagined your tiny death rattle.

And then I went home and cleaned like a woman possessed.

If you’d touched it, into the garbage, laundry, or freezer it went.

And then, I tackled my child.

It wasn’t pretty.

It wasn’t fun.

But it had to be done.

And if you ever come back into my life, I will totally do it again.

Breaking up is hard to do.

But in eleven days, after a repeat cathartic cleansing, it’ll be over.

I’ll finally be rid of you.**

Happy Lousy Valentine’s Day, you creep.

 

Lice Check

Asterisk Bedazzled Footnote:

*I’ve never paid so much to have my hair done only to leave a ‘stylist’ looking more like a train wreck. Except for the time I went to high-end salon and they gave me (without my permission) some godawful cut called a ‘Rachel.’ Looking back, even this experience wasn’t that bad!

**Don’t visit us for at least two weeks to be safe.

Kiri Louse
The price we pay for hugging people.  Maybe my son had the right idea all along.

 

*_____________________________________*

You read this far bonus:

I found a weirdly appropriate book in French while searching for Google images to accompany this post. I couldn’t quite fit it into the above text but wanted to share it with you.

Here is: The Terrible Adventures of Valentine and Her 118 Lice.

Valentine and her 118 Lice

Yes, I’m giving you lice for Valentines.

It truly is the gift that keeps on giving.

 

Featured image available at: https://www.toilette-humor.com/valentines/valentines_heart_rejects.shtml

 

 

What the Flake?

Dear Powers That Be:

I don’t know who you are but you obviously don’t have any school-aged kids at home, or you would understand what level hell you are putting us through. By us, I mean parents who had hopes of getting through this winter alive with our sanity intact. But no. You’ve trapped us in our homes with our children for, FLAKE*, what is it? Ten days now? Eleven? I’ve lost count of how many flaking snow days it’s been. Continue reading What the Flake?

Blow Drying…Please Stand By

In case you are wondering how my year is going and why I am offline…

2019 kind of blows!*

Asterisk Bedazzled Footnotes:

*This is karma in action, I swore I wasn’t going to buy any more tea until I drank all I already have…but I just can’t kick the loose-leaf habit.**

**Fingers Crossed People. Otherwise, get used to the pithy new mode of blogging I can achieve typing with one finger on my cell phone. On the upside, I can now blog while on the toilet. So this is a case of the glass being half full, really.

With Prejudice

I’ve been keeping secrets.

Because I had to.

Because it involved a court case.

That involved my son.

I wrote an anguished post with gut-wrenching pathos at the time it happened.

And I’ve waited until the final hearing to share it.

You may question whether it is appropriate to publish such personal information.

I certainly have.

But, I have decided that if it is at all possible to help another child by sharing what we endured…

…to reach out to other autism families.

…to other police officers.

…to other neighbors.

Then, maybe next time, nothing bad will happen.

Or something better will happen.

Or nothing will happen at all.

And wouldn’t that be beautiful!


Cops
Who did this protect and serve?

June 9, 2018

Dear Officer:

We met today under the worst circumstances. You were just doing your job; I understand that. But I feel I need to explain why I behaved the way I did and, perhaps, you can understand a little bit how the exchange seemed from my side of the handcuffs.

I came to the door, half-clothed and disoriented by lack of sleep, to learn my son had escaped. For fourteen years, I have been responsible for keeping my child safe and I have failed. Again.

But this was different from other times.

The neighbors whose home he entered were sleeping. All they heard was an intruder.

And my son no longer looks like the little boy he is.

When you first approached me, you said something about my son not responding to requests. My reply was not polite.

“Of course he can’t respond. He is a non-verbal autistic!”

You walked away as if you needed space to process that.

So, when you came back and asked me, “Do you realize what might have happened?” I answered you honestly.

“Yes. Yes, I do. It is my greatest fear.”

I was not trying to argue that the situation wasn’t serious. I was just grateful nothing worse had happened. I was focused on making my son feel better, to calm him down right now so he wouldn’t injure himself.

And you wouldn’t let me see him.

You have protocols for interactions. None of the officers would let me approach the car where my son was handcuffed. But I could hear him wailing from where I was standing in my bare feet on a damp sidewalk. You have your emergency response and I have mine.

I have a mother’s need to care for and defend her child. It doesn’t matter that my ‘child’ is five feet eight inches tall and weighs 170 pounds. He is still a child who was crying because you had his blanket, crayons, and papers. Materials now taken away in evidence.

It is probably not expected for officers to feel empathy for the wrong-doer, or his mother. To care about both sides of an equation. Perhaps you were running on adrenaline?

Did you train your firearm on my special need child? He couldn’t follow a simple command like, “Put your hands in the air and get on your knees.”

This thought haunts me.

I later learn, from the reports, that you had to tackle my child to get the cuffs on him. That he resisted and clung to a door frame as he was pulled from the house. This explained the bruises and abrasions.

Trust me, I can picture what might have happened in painful clarity.

In the past, when my son has escaped and entered homes or the nearby church, people have recognized his special needs and things have been okay. Maybe that made me blind to a growing problem.

The fact that my son was wearing a pair of Christmassy pajama bottoms and a Victory Day t-shirt from the school’s special needs programming wasn’t enough to tell you how very special he is.

The training that kicks in and locks an officer into a rigid response doesn’t allow you to recognize my shock and relief at a nightmare that wasn’t fully realized. Perhaps that looked like an insult to you? It wasn’t meant to be.

You couldn’t know that I had been sick with Salmonella. That Friday night was the first night I got any real sleep in almost a week. So, when my son woke at five a.m. Saturday, I was disoriented and put him back to bed. That when he woke me at 6:10 a.m., I was more so. That I fell back asleep is my fault. I promise you, I’m wide awake now.

I am haunted by what might have happened. I am haunted by it every time he is out of sight. I am haunted by a future I cannot see or control but can only dread. Fear never leaves me.

I am grateful that he wasn’t taken into a police station and booked. Thank you for releasing my son into my custody. Even if, like Cinderella, you sent him home with only one shoe.

I had hoped that the neighbors would drop the charges against my son for entering their home and scaring them so badly. But their fear was greater than their understanding of autism or the limits of a system that is not built for children like mine.

I do not blame them. Or I try not to. I understand how it must have looked from their side of the road; I just wish they could see the situation from mine.

Just as I hope you can understand. And that you never learn how it feels to watch your baby in handcuffs, crying and just wanting to go home.

*


Like many unpleasant life lessons, this has been a learning experience.

The wheels of justice move glacially slow. 

We waited weeks for the notice that my son was being charge with first degree home invasion. Then we had to be assigned an attorney by the court. Then there were appearances and reports to submit. The sheer drag time of getting a competency review dulled the initial sharp stabs of terror to a steady, gnawing anxiety.  I cried a lot this summer and into the fall.

During that time, Child Protective Services became involved. I was very grateful for the unexpected kindness of the Children’s Services Specialist who eventually cleared me of charges of neglect.

There were some positives.

The county health organization expedited Alexei’s process for getting ABA assistance as well as Community Living Supports. We are finally getting the help we’ve needed. 

Also, I was able to take advantage of a program through Vivint Gives Back to get a reduced rate for a security system that will wake me up if any one of the doors or windows are opened.

And my son’s window now has security bars, because he can get into trouble even faster than an alarm system can wake me.  (I stopped jerking awake at the slightest noise after these were installed.)

My son’s psychiatrist agreed to let my son take stronger meds to help keep him asleep.

And this week, my son was declared legally incompetent.

The case was dismissed with prejudice. Which is a good thing. It means he can’t be held responsible for his crimes and the verdict is final.

And I can only hope that the next time a family like mine is struggling, that it doesn’t take a crisis to get assistance. And that maybe the neighbors will offer to help make our lives easier instead of harder.

As for me, I spent these months channeling my fears and anxiety into my garden. Every time I had a panic attack or thought about losing my son, I planted flowers. I think I there are over five hundred bulbs and perennials out there now.

So, when spring arrives, perhaps it will bring a promise of better things.

Tulips