girl at large

Where The @#%* Are All My Spoons and Other Parenting Mysteries

I am missing almost all my little spoons. Twenty four years, two continents, three cross-country moves, countless apartments. And now? Gone. Where? WHERE DO THEY GO

Why does every daycare, every camp, every school, every aftercare have to have their own version of the same forms? WHY ARE THERE SO MANY FORMS

Why isn’t there just one portal that holds all the current health, vaccine and contact records? Then the damn daycare, camp, whatever can just enter their social and bingo there’s all the info. Where is that app?

Speaking of portals…WHY ARE THERE SO MANY PORTALS? And why are they all so very very bad?

No, I cannot remember my username and password. Please torture me for the next hour by sending or not sending or texting or not texting the link and/or the code to reset my password. Oops, sorry, let’s start with the username. And a xanax.

The smells. Diapers were nothing, those contents are supposed to smell and we got used to it. Modern diapers and diapering equipment are chefs kiss compared to decades past. No, this is a new phase, an era….THE SHOES. WHY DO THE SHOES SMELL SO BAD.

Tote bags. Weekend bags. Hobby bags. Overnight to Grandma’s bags. Swim class bags. Things to do on vacation bags. Road trip car food bags. Beach bags. Swimming pool bags. (yes they are different). The bag of bags. Canvas, vinyl, leather, plastic, straw, even rubber. Zippered, not zippered. Long handles, short handles. This one’s too heavy. This one’s too small. I need more pockets. Damn, why do I keep forgetting things in the pockets? Graduated smaller zipper pouches that go inside the bags. A pouch for this, a pouch for that. WHERE IS THE PERFECT BAG

Why does the pant waist get so much bigger? Kids mostly grow up more than they grow     out. Waist fits? Great, these pants are actually capris, yes kiddos capris are in. Length right? Waist is size of a tractor tire. Sorry kiddo, I have to safety pin these in like six inches. WHY CANT THEY MAKE PANTS

Water bottles. WHERE DO THEY ALL GO AND WHY DO WE NEED THEM

Shoe sizes. Is a Little Kid 13 the same as a Big Kid 1? Is this brand US, UK or Euro? Is Walker the same as Toddler? WTF is Junior?  WHY IS IT SO COMPLICATED 

Safety. I can’t drive them unless they are buckled into a car seat that is anchored to the car, inspected by the Fire Dept. There are four stages of car seat, all required by law, all tested by the government. Car seats even expire! I can’t put my kid in the front seat until at least age 13. HOW IS IT LEGAL TO PUT THEM IN A CANVAS BICYCLE TRAILER

WHAT IS WITH THE GOLDFISH

 

 

 

Big T and little t

Trauma.

A popular word. A challenging word. Who does it belong to? Who qualifies? How do we value all the pain, without making the suffering all the same value? Does it have subcategories? Is it a spectrum?

I’ve struggled with the Trauma term, I don’t use the word for myself. It’s everywhere, for every range, rightly or wrongly, of bad situations. My therapist has diagnosed me with Medical PTSD, of course, medical trauma. Technically in the DSM maybe yes, but spiritually I reject it. I have all the privilege, means and support to treat the traumatic effects of what I call TAMS (The American Medical System). I may be experiencing traumatic things, but do I suffer from Big T Trauma? I don’t think so. 

I don’t feel guilty often, I don’t give that emotion much room to inhabit. But I do feel guilt, Big G guilt, when I think of using “Trauma” for myself.

Today, in chemo, I had an intense experience that told me, like a one-act play, exactly why.

An older gentleman in the infusion bay, the only other patient in the room with me, began talking to his nurse. She listened as she ran his IV. His voice was clear and steady; we made eye contact and acknowledged with a nod that I was listening too…

“When I came back from Vietnam it was really hard for me.

It really messed up my life.

When I went in a bar, I had to sit in the corner, with my back protected.

Not sure why I’m talking about this now. Sometimes you just need someone to listen.

What you did wasn’t right.

I didn’t like killing people.

You see some hideous things that exceed anything you’ll see here ever even as a nurse.

A whole different world that you don’t want to be a part of.

You’re trained to kill.

You’re trained to ignore pain.

Ignore death.

Ignore everything.

It’s a mental state I can slip back into by accident sometimes.

If an officer approached me and I didn’t think it was legal, if he touched me I’d claim self defense. I’d hit him right in the throat first shot. That’s an easy take down, you know?

You get into that mode you don’t realize what you’re doing.

I try to control myself and not get into that state of mind.

I could become very very dangerous to many many people even at 76 with the cancer.

I’ve got gas masks for my whole family.

I’ve got my m16, all kinds of weapons.

Just in case.

And my for my mental well being I want to be prepared.

I’ve got probably 4000 rounds of armor piercing ammo down there.

I don’t tell anybody that.

You’re the first person I’ve told that.

I’ve got a vest for all my clips, special ops stuff.

I put on that camo gear and I’m right back in that mental state.

Why am I telling you this?

Probably because I had some bad dreams about it last night.

I don’t really dream about it anymore, it came out of nowhere.

Here’s a quote you should remember—

“For those who fought for it, freedom will have a taste that the protected will never know.” It’s on my old Zippo.

I’m an old warrior fading away.

I want the best for everybody and I can’t do it.

It’s out of my reach.

I have a heart now that I didn’t have before.

You want to reach people. You want to help everybody if you can, that’s where I am now.

I brought my kids up right.

They’re a lot different than what society is today.

I brought them up as caring, giving people.

My mental state wasn’t too good when I had them.

You can only do so much.”

 

 

The Heart’s Folly

 

 

 

 

 

 

 

 

 

 

 

Just remembering that Valentine’s Day I was at the gyno for a LEEP procedure and the receptionist gave me a single rose…

That Valentine’s Day I took the bus to Rocky Roccoco’s with my best friend and we got the heart shaped pizza and balloons together.

That time I got the courage up to ask someone on a date; we arranged to meet at my place for dinner and he BROUGHT HIS LAUNDRY.

That Valentines Day my best guy friend who I secretly crushed on took me out dancing to our favorite club where that night he met the gal he married.

That Valentine’s Day my boyfriend gave me generic lube. GENERIC.

That Valentine’s Day dance at the all-girls boarding school, a girls-only dance. So no funny business. The nuns knew, right? They knew. 

That time the officiant asked the guests to raise their hand if they’d been married twenty five years or longer and my DAD raised his hand with his SECOND wife. (We like her, fyi, it was just kinda funny)

That Valentine’s Day morning when the unhoused gentleman on the corner had a lady friend and I didn’t.

That time someone said “There’s a lid for every pot” and Mom said “Poor Kate, she’s such a skillet”

Ah, romantic love.

 

 

 

 

These Things I Know

 

 

 

 

 

 

 

 

 

 

 

 

 

These things I know about The Holidays:

He will say “What did we get the kids?”

You will buy too much and yet not get something “right”.

There will either be no snow or all the snow.

The cat/dog/hamster will barf/poop/die.

You will forget to send a card to that one person who will remember.

The tree will be lopsided or scraggly or expensive or all three.

Church will either be your shelter or your nemesis.

If the car got paid off this year, it will break down.

You will fret about something no one, not a soul, notices.

A family member will freak out, flake out or drive you out.

The lights will be tangled.

The batteries will be dead.

The butter/milk/flour/eggs, no matter how much is purchased, will run out.

You will deliver a gift to a neighbor you see about once a year, usually in the spring.

You are too old to shovel. Seriously. Put the shovel down.

Kids will stay up too late, awaken too early, peek too soon, nap too long, eat too much, and be too too much.

…(warning, seasonal sappiness)…

I also know not all kids will be loved. Not all countries will be at peace. Not all homes will be warm or safe. Not all checks will clear. Not everyone will have what we have this season, and though my hands are chapped, my feet ache and my wallet is empty, I hope our hearts will be full. 

And maybe a little tipsy.

 

The Likes We Need

 

 

 

 

 

 

 

 

 

While preparing my paintings for the Shorewood Artists Guild show, I pulled everything out in front of me, all my curly papers gathered together for the first time. Little paintings, bigger paintings, big pieces that failed, sweet little unfinished pieces I had been disappointed with that now look so good, piles and piles of work. I’m so proud of the work I’ve done, the skills I’ve learned, the commitment I’ve kept to my late night art desk.

Painting, for me, is an exercise in hope. Hope that I’ll get it right next time, hope that the magical mistakes will indeed be magical, hope that a little more practice will firm up that new skill, hope that my people will LIKE my paintings. I’ll admit it, I paint for likes. I paint for myself, but also for the outer world, to say, hey, I’m here and I’m hoping you like me. All of us want that, in some way.

Validation.

Acknowledgement of our experience, our struggle, our pain, and our wins! Validation. It’s the gift and the curse. Powerfully uplifting when we receive it, devastating and corrosive when it’s missing. Why do we feel invisible without it?

I’m working on validating myself, thank you Therapy. I’ve chased validation for a long time, in my identity as a “real artist”, now it’s here and I feel great. Proud, energized, motivated and so supported. The art show night was a big win for me. 

And, as life likes to do, it reminded the very same week that some validation we may never receive, despite how hard we try. Letting go of that hope is hard and sad. For me, that feeling cannot be painted over, it will likely linger for a long time. But I can stop begging for that “like”. That hope has to go.

But I can be proud that I was just as committed, did the work, and tried to improve my skills. Sometimes the canvas just isn’t there.

Seeing Myself

 

 

 

 

 

I’ve been working with a therapist for the past year to deal with the fear, grief and upheaval of metastatic cancer life.

Dealing with cancer now brings up a lot of stuff from back then. All your old messed up shit comes rising up to the surface when you think about your mortality. So we talk about now, and we talk about back then, and we talk about how they connect. And how to free myself from some of the old shit, so I can face this new shit. Oh the irony! Figuring yourself out just in time to die.

In the spring, she suggested I may be ADHD, and recently we dug a little more in to that. I know it’s trending, I know everyone is TikTok-diagnosing, especially women and later-in-life diagnosis—-but hear me out!

What if…

What if my anxiety…

What if my anxiety and depression…

What if my anxiety and depression and crushing sense of perpetual

failure…

What if all this time, it’s been ADHD?

I was skeptical. Another diagnosis feels like another burden. I have never once thought that ADHD might apply to me. I just don’t fit the stereotype I have in my mind. And no other therapist has ever mentioned it—however they have “diagnosed” me with social anxiety disorder (nope), panic attack disorder (nope), borderline personality disorder (big nope!), and more… So what is one more wrong label?

But also, what if this is the right label?

I made a list for Dr.B. I listed all my ADHD-like behaviors, my quirks and work-arounds, things I avoid, things that make me uncomfortable, memories of school and childhood that rang ADHD bells, my struggles at work and with emotions. I wrote it all down.

It was six pages. Bullet-pointed, categorized and described in great detail (usually in parenthesis).

At todays appointment she laughed conspiratorially and said “This was a joy to read. This is hyper focus. This is a rabbit hole”. Yes, she said, waving the six pages, THIS is ADHD!

And it’s gonna be fine.

Island Time

 

 

 

 

 

 

Madeline Island was so beautiful. My paintings, however, were not. It was a glorious week all to myself, surrounded by magnificent views of prairie, woodlands, lagoons, bluffs, and mighty Lake Superior. The instructor was also superior, ahem, Mr. Superior. And that’s all I’ll say about that.

So, the instruction wasn’t a good fit for me, but the classmates, food and painting locations were perfection. Though I didn’t produce any work to brag about, I did rekindle some dormant skills—

Painting from life

Value studies

Bullshit detecting

I’m beginning to really enjoy this Watercolor-Menapause-Yoga Pant-No BS phase of life.

Good Scrolling

 

 

 

 

 

 

 

 

 

Today was a Bed Day. For every three to four Doing Stuff days, I have one Bed Day. I’m working hard to suppress the bad feeling about staying in bed all day (thanks a lot capitalism, Lutheranism and midwestern mythology). I’m working on accepting my “new normal”.

The best part about the new normal is Mama’s Bed Time. It’s my favorite time of day. 

Tonight, I had them both laughing and squealing at cat videos I had saved for them. They LOST THIER SHIT. I haven’t heard them laugh like that in months. 

So, now I’ll be staying up all night tonight saving stories and reels and TikTok’s of all the funny cat things. 

Trust Me, This Was Hilarious

 

 

 

 

 

 

Me: “Therapy was tough this week. She suggested I’m holding on to this grudge because it’s easier and less painful than facing my mortality.”

Mom (aged 79): “Well, I’m having to come to terms with it too.”

Me: “What is that like for you?”

Mom: “Losing you is going to be hard.”

Me: “Wait, who are we talking about? YOU or ME?! Do you think you're going to outlive me?!”

Mom:  “Oops”

Little Moments

 

 

 

 

 

When I got home from the hospital, the first thing I did was take a long shower and do all the things—shampoo, fancy body wash, every lotion I own. The kids, who didn’t know I was out of the hospital, came home about an hour later and ran right up the steps to jump on me in bed. 

“Mama’s home!!”

“How did you know I was here?”

”We could smell you!” 

 

 

 

I’m So Sick of This

 

 

 

 

 

 

 

 

Cancer blew up my life, sepsis has blown up our summer. We’ve had to cancel two of our little summer adventure trips, reschedule our beloved Shaker Village trip, and I missed my painting retreat on Madeline Island.

The Madeline Island art school was kind enough to let me roll over about half the cost to another session, so I’m going at the end of the month. But it’s not the same teacher or focus. It’s a bummer.

The summer weekend trips have given me so much escape…I would guess most people can see the “bucket list” drive I’ve had for them. More than once I’ve pushed myself too hard to make a drive, or to do too many activities. There’s a frenzy behind the fun.

I wanted another summer of making memories and getting out in beautiful landscapes…me walking behind the kids as they run on a beach or explore a new park, thinking of my death. Thinking of my absence in their lives and desperately trying to fill the time with fun and novel places. Hoping they remember us as an intact unit. Hoping they remember me.

This  “Phase 2” of my cancer has been really hard. In some ways harder than Phase 1. Phase 2 started when they found the cancer cells in my ovaries in September. In a day, everything changed. I went from holy cow I think I might be ok for a long time and only having to take 1 cancer drug (with no side effects!) to crap this thing is never going away and all the chemo and complications since. My therapist said I haven’t even processed that yet. She’s right.

I’m pissed. This is so unfair. I did everything I was supposed to do, I suffered stoically through it all. And I STILL am the loser.

Stage 4 is a strange thing. It’s death and yet we keep living. It’s invisible yet we are being slowly murdered. The treatment saves your life but alters your life beyond recognition. How can I be grateful for that? I’m not. I’m really really pissed.

I want my summer back. I want my life back.

Blackberries and Whiplash

 

 

 

 

 

 

My arms and hands are bruised from the many many blood draws and IV sticks. My veins became unruly by day two, my skin blooming with purple and green blackberry splotches after every failed attempt.

There was never more than three hours of uninterrupted sleep. The second day, my plantar fasciitis erupted out of no where—-excruciating pain when I put any weight on my heels. Hobbling to the bathroom with an IV pole, a failing bladder and useless feet made a few nights almost unbearable.

I had sepsis. Staph entered my blood stream most likely through my port; it’s not uncommon and one of the most dangerous complications of cancer treatment. It’s also awful. 

Just two short days before I was admitted, I had my 3-month CT scan. It was completely clear!

And again, we hardly had time to absorb and celebrate the (incredibly!) good news before this latest set back grabbed me by the collar. I feel like half of myself. Paul is full time parent, part time nurse, and somewhere in there he is also holding down his job. He doesn’t complain, but I know he feels the sting of the whiplash too, can’t we ever just get a break?

 

Pick Two

 

 

 

 

 

 

 

 

It’s been almost a week since we returned from our epic Nebraska road trip, but I’m not yet feeling back at home. We returned Tuesday evening and went right back to work and school, and for me, Chemo on Thursday.

I’m having a hard time with this treatment, physically and emotionally. Steeling myself for bad side effects when the initial chemo had an end date was easier. This chemo has no end date, except when it fails me and the cancer spreads, which, hopefully, isn’t for a long time, as in years. So, we HOPE for YEARS of this…

Here, have some steroids with your chemo to protect your GI tract and prevent shock. Don’t worry, after four days of insane hyperactivity you will crash into exhaustion and nausea. Also diarrhea.

Nauseous? Take this. It might make you drowsy. DON’T OPERATE MACHINERY UNTIL YOU KNOW. 

This medication is for your heart, very important, but it causes blurry vision.

This medication, for something else entirely, can also cause drowsiness and blurry vision. Which one is the culprit? Who knows?!

This medication causes dehydration. STAY HYDRATED AT ALL TIMES DURING CHEMO.

But not too hydrated, because you know, diarrhea.

This is another medication for the nausea that won’t get better, it will most certainly make you drowsy.

Here are some progressives for your computer work. They could help or they could make your vision and headaches worse.

Here is an anti diarrheal. Oops, constipation!

This one should help more with the diarrhea but it causes dizziness. Good luck with the nausea. 

WHAT DO YOU MEAN YOU'RE TIRED AND CAN’T SEE? 

 

Can I just go back to where I could sleep in and only had to focus my vision on prairies?

Memory Gravel Road

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Our trip to Nebraska is full of nostalgia, memories and memories being made. There’ll be more to write (and paint) later, but for now, this gem.

Charlie: “Pioneer Village is the BESTEST thing I’ve done in my entire life! Well, almost”.

Me: “Almost?”

Charlie: “Yah, I don’t know yet”

Me: “What do you mean?”

Charlie, gesturing wide: “Well, I DO have MORE life”

Artist Statements

 

 

 

 

 

 

Bald Reality 

I’m a middle aged, menopausal midwestern mom with a chip on her shoulder about unrealized artistic potential. I have deep-seated insecurities about my ability to create “real” art and be a “real” artist. So, I use self deprecating humor to dodge any real discussion about my goals or vision. Also, I hate the word vision. I don’t have one, I just like to paint. Somewhere along the line I learned to feel better about my own abilities (and lack of education) by internally judging other amateur artists work with snobbery. I did this the most when I wasn’t actually doing any drawing or painting at the time myself. Ick. I own more than one fancy camera and I pretend to know how they work. 

 

What I Thought I Was Supposed To Achieve To Count As A Real Artist and Valuable Human Being

I received my BFA from bladedah blah expensive art school and my MFA from another urban and urbane school far away from where I grew up. Though steeped in family artistic roots, I left my midwestern home for more exciting and interesting locales around the world. I have shown in NYC, Chicago, LA, and throughout Europe where I honed my skills in oil painting, photography and print making. Currently repped by gallery such-and-such in LA and fabulously dressed by so and so for every gallery opening. (That last part is all I really want).

 

Where I Want To Be

I like to paint. I’m growing my skills, and really enjoying watercolor. I grew up surrounded by creative art makers, hobbyists and doers that influenced my interest and knowledge of all sorts of art and crafts. Currently, I make paintings of open, natural places that I visit, landscapes and places that bring me mental peace. I use my photos for reference and my memory for expression. I make paintings in between raising two kids, working and having life-long treatments for stage 4 metastatic breast cancer. No, I don’t want to paint about that. I paint to escape that. I don’t want to sell a lot or have shows, not really, except to make people happy. I love to give paintings to people who enjoy them.

Mothers and Community

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Someone once said that my Mom and I are so alike we “are like one person”. That was odd, and kinda creepy. We are our own people, but I think, given some grace, what they meant was that we are in synch, simpatico, strongly bonded.

We are close, but able to have conflict. Loving, but not best friends. She is a mom, not a buddy. And thank goodness, because when I fucked up or when I was fucked up or now as my life is getting fucked up, I needed a MOM. This Mom.

This woman who in just two months has been elected to the residential committee, taken on shifts at the gift shop, joined the annual festival committee, and is currently mid-coup in the garden club…this working mom who anonymously paid for braces and eyeglasses for strangers kids. This artist who got bored sitting on the board so decided to actually work IN the domestic abuse shelter. This traveler who never before sailed or spoke another language who sailed the Mediterranean in her sixties. 

This bright light, an Eldest Daughter and my North Star. Also, one hell of a stealth farter. Seriously, don’t get behind her at the Target.

 

Outdoor Dreams

 

 

 

 

 

 

 

 

 

The arrival of midwestern Spring has been slow and temperamental. The kids have been restless and temperamental.

I ask them to play outside for at least a few minutes every night after dinner. I have visions of their youth spent playing in a bucolic garden, on a leafy charming street of bungalows as the sunlight dims and the vintage streetlights glow…

So far, I’ve had to bring them back inside for screaming at “bloody murder” levels because:

-The hose was too slippery

-Felix told Charlie he was annoying

-There was a puddle

-Charlie had the worst day of his life, EVER

-The cat got out (and just sat there, but still caused screaming)

-Someone put a sock on someone’s head 

The Yoga Lady Has No Robes

 

 

 

 

 

 

 

I had an unsettling interaction with a provider this week. I was seeking some physical therapy relief for my Woody Fibrosis Neck (caused by radiation), chest scar adhesions, and restricted range of motion on the right side.

Pretty basic stuff that my usual PT handles well, but this provider was recommended to me because she does Myofascial Release, a relatively new massage/PT technique. The hope was it might do wonders for the chest adhesions and fibrosis especially. What was not new, to me, were the red flags of a provider who doesn’t really get it.

There was no robe to change in to, and the therapy space was….not ideal. Strike one.

Then she did the dreaded head tilt, heart clutch and “I feel sooooooo baaaaaaaad for you”. Strike two.

Then, as we reviewed my medical history:

Tsk tsking when I said the insomnia is caused by the steroids.

Saying “Well….” when I said the anti-estrogen therapy was causing joint and muscle pain. 

And on and on, finally culminating in a devastating dismissal of my very real experience when she scolded me. “You have to get out of your Thinking Brain and do the work to get into your Feeling Brain”.

Lady, what I have to do is get out of here. 

Fear and 50

 

 

 

 

I’ve been ruminating on being 50, dying younger then I planned, and what I want to be when I grow up.

It’s been a challenging few months; the recent down slope of this Cancer roller coaster has been a long, slow descent this winter and now into spring.

I’m working on a larger scale painting, something new and also challenging. Charlie visits my table each evening and offers his critique:

“I like it, it looks just like the picture except without that leaf”.

“I’m getting nervous.”

“Afraid you’re going to fuck it up?”

Oh darling yes. Exactly. 

‘Tis The Season

The season to be overwhelmed, over budget and over scheduled. I’m opting out of a lot of things, streamlining the holiday chaos. But tonight we could not escape.

There are TWO parties tonight. One birthday, one holiday. For kids. The kids explain the parties:

“Mine is a sleep under but you don’t have to wear pajamas. You can wear regular clothes. But maybe bring a blanket. I wanna bring a small blanket, not a big blanket. No, not that one, a different one.”

”Mine isn’t sleep under, but I need a separate bag for my clothes just in case we decide to change it to a pj party. No, my backpack is full, I neeed another bag. No not that one, a different one.”

“Becky may not like the book, but that’s ok because maybe her sisters will like it. I don’t like it but thank you for getting it for her. I rewrapped it for you”

“It’s casual, it’s not like a grown up holiday party, I don’t have to dress up, it’s CAAAAASUUUUUAAAL Mom”

”There will be kindergartners there, and I don’t know any of them!”

”There’s probably some sort of food there, I’m hungry”

“It’s low key, but for the gift exchange I absolutely have to have a pickle keychain.”

“Has the pickle key chain arrived yet?”

“Has the pickle key chain arrived yet?”

“Has the pickle key chain arrived yet?”

“Has the pickle key chain arrived yet?”

 

One party is 5:30pm to 9pm, the other is 6pm to 10pm. My bedtime is 8. As Paulie, ever the modern parenting hero, rounded them up in to the van, I reminisced about my own elementary school years, particularly 1979—

Me: “Mom, I never get invited to birthday parties or sticker parties and I have no friends”.

Mom, acrylic nails drying, drags on a menthol Benson & Hedges: “What do you need friends for?”

 

Hospital Saga, Part 4. Gratitude Edition

It was a rough week, made rougher by interrupting a holiday. Though, honestly I didn’t mind the timing that much because my customers were also unavailable. That was one less thing I had to worry about. An empty inbox is very healing.

Also very healing are all the wonderful, thoughtful, courageous people in our lives. Thank you ——-

My rock of a sister-in-law who was unfazed by the dramatic change in plans, and cared for my kids for four days, keeping them full of Thanksgiving treats and distractions.

My other rock of a sister-in-law who always says insightful and compassionate things and keeps everyone up to date, even while juggling other family situations.

My dear friend who bought and delivered new flannel pajamas. I won’t call for a ride to the hospital, but I will text request a friend to buy me luxury lounge wear.

Mom. So many things, lots of phone calls and letting my boys sleep in her room. And loving them.

Dad. All the medical advice and empathy. I heard you talking to Paulie, you really delivered the steady presence he needed.

My Portland friend, who called me immediately at the hospital and said “WTF Cheese?” which is EXACTLY what I needed to hear at that moment.

My kind and generous next door neighbors who offered to spend time with the kids every few weeks so that if there’s an emergency they will feel comfortable with them. We hadn’t gotten around to arranging those visits yet, and look what happened! We will fast track that plan now.

My sister, who listened to probably waaaaay too much confusing medical stuff, when I was confused myself and also losing my words (medical brain fog), she is my best listener. A service that cannot be over valued.

The meal service delivery guy who quietly said “I’m praying for you” every time he put my tray down. 

My brother-in-law who just glides in and cares for the kids without ever a complaint or even a sigh. He’s our last minute guy, and always always happy to help. Also, very dapper. 

My deeply kind co-worker who takes on everything I send her when I’m dealing with this stuff, and best of all, she JUST DOES IT WITH NO QUESTIONS. 
 
My “It’s such a small-world” friend and neighbor who delivered yet another treat bag of PERFECTION. Only another harried mom would know to include juice boxes.

The Coven! (Can we let the name be known?). I’m tearing up right now. You made and delivered an entire white trash Thanksgiving meal, WITH FLOWERS AND NAPKINS (fancy white trash). Who knew my some of my closest friends were at school board meetings?

The doctor who didn’t laugh when I REQUESTED a Foley catheter. Don’t judge. Peeing in bed when you’re  hooked up to an IV and have a vaginal birth + menopausal bladder is goddamn heaven. They should make home versions.

And Stevie. Shhh, don’t tell anyone Stevie but I missed you the most.

Hospital Saga, Part 3

Diagnosis (sort of)

So, I was admitted for hypoxia and suspected congestive heart failure. My oxygen level was low and that troponin level (heart damage indicator) was high. On the second night I had an “attack” of pericarditis, an excruciating and frightening episode of extreme chills and intense chest pain, caused by inflammation of the sack around the heart. Enter the “Rapid Response Team”. Exit Paulie’s composure. 

For the next five days they lowered my blood pressure, raised my blood pressure, increased my oxygen, decreased my oxygen, raised my heart rate, slowed my heart rate, dehydrated me, rehydrated me….felt like I was a set of human Etch a Sketch knobs. This way, no that way, up no down. And let’s wake her up every hour and poke her tiny veins just for fun.

On day four, they did a cardiac Stress Test. This is usually done on a treadmill. For patients like me, who can’t do that and are hooked up to a bunch of IVs, they do a chemically induced stress test. In other words they hook you up to a bunch of wires, tell you to wiggle your feet and then GIVE YOU A FUCKING HEART ATTACK.

Worst. Experience. Ever. I’ve had chemo, radiation burns and torn during childbirth. No comparison.

After I recovered from that, and was breathing without oxygen for two consecutive days, I could be discharged. It took a day longer than we hoped because no one was available to do the cardiac CT over the weekend. The Stress Test, Echocardiogram and Cardiac CT showed that my heart has no blockages or other traditional causes of heart failure. Good. My ejection fraction was down from my normal rate, so my heart was weak. Chest xrays continued to show fluid on my lungs, because my heart wasn’t pumping at full strength. Not so good.

So what happened?

The consensus is that the oral chemo Lapatinib is the most likely culprit. Her2NEU chemo agents are known for this issue, thus the frequent baseline Echocardiograms I’ve had every six months through my treatment.

So, they’ve added four more medications to the mix. I wore a heart monitor device for three days to collect data on my rhythm (I was tachycardic occasionally). I have a cardiac MRI next week, more blood work and the usual round of appointments. Lucky for me, my care system has a cardiologist specializing in chemo related heart issues. He’s 12, but I trust him. He and my oncologist will consult and decide what to do next. In the meantime, I’m going slow, conscious of every breath and I hate stairs.

Speaking of heart stopping moments, I already got a “We reject your hospital stay claim because your doctor has not sent proof it was medically necessary” insurance letter. Bwaaaaaaahaaaaa, ok.

Hospital Saga, Part 2

Within minutes at Urgent Care, we realized it wasn’t urgenty enough, so we zipped down the road to the Emergency Room.

The secret to fast service? Chest pains and a Smurf-like complexion.

My oxygen level was 76, my chest had a tire on it, the portable chest X-ray showed my lungs were full of fluid. The moment the nurse flung back the curtain and said “Yep, you’re getting admitted”, I relaxed, gave in to the situation and absolutely luxuriated in the oxygen.

The days that followed were a mess of medications, IVs, blood thinners, heart monitors, scans, machines, a lot of 3M products, and many many faces behind medical masks. I had to tell the story of my symptoms and answer how are you feeling so often that I currently cringe when anyone, very well meaningly, asks how I am. 

Triponin is a protein the heart excretes when it’s damaged. A normal level is zero. At admission, mine was 6.  Three of the days in the hospital were just waiting for that to go down. It did, and was almost normal by discharge.

I’m still absorbing everything that happened. I’m honestly confused and a bit traumatized. It’s a struggle to find any humor in this part of the hospital saga, so this post is rather unsatisfying. But, my situation is also unsatisfying, at least until I get new plans from my doctors.

And also a do-over for Thanksgiving with my family.

Hospital Saga, Part 1

It started Saturday, I assume as a virus. Chills, fever, and an intense headache. Covid test negative. Then a strange stiff neck, like a vise. More fevers and chills, still Covid negative.

Feeling a bit better on Sunday, ok this is just a cold or flu. Terrible body aches, but no cough and no congestion, the fever broke. Monday I stayed home to rest and in case I was contagious. Another Covid test negative. 

By Tuesday I was short of breath. But that’s a side effect I’m used to, so it was manageable. Until it wasn’t. Tuesday night I slept sitting up, increasingly alarmed at how ashen I looked and how my chest was tight. I messaged my nurse navigator.

Wednesday morning, Paulie took the kids to school and then headed to an ENT specialist doctors appointment for which he’d been waiting many weeks. I labored to breathe and knew when I saw my nurse flash on my phone what she was calling to say--“You have to go to the ER, I’m worried about a blood clot.”

Ok, scramble to send a few messages, get Paulie on the line. We decide, I DON’T KNOW WHY, that he should complete his appointment and then come take me to Urgent Care.

At this point, my face is grey and my lips look like two dead alewives. I’m crawling on the floor so I don’t fall or pass out in the house alone. It takes me an hour to put on pants. And by pants, I mean underwear.

Meanwhile: 

 

General:

Patient is a pleasant well developed male in no distress.

Patient is able to communicate without any problems.

Voice is normal.

Affect is normal and patient is alert.

Head appears normocephalic and without evidence of trauma.

Facial strength appears adequate.

 

Ears:

External auditory canal shows significant, severe bilateral cerumen impactions which extend all the way down to the eardrum on both sides. These appear to have been pushed in some how. These are carefully and meticulously removed under direct visualization using a combination of instruments including otoscope and suction. This requires moderate to severe effort of about 10 minutes. Patient tolerated this procedure very well and there are no complications. After removal he notes improvement in his hearing in both ears.

 

 

EAR WAX. They removed his compacted EAR WAX.

 

All The Screaming In My Head

"You can beat this."

    No, I can’t. Nothing I do will change how the cancer acts or how I respond to the treatment. 

"You're so strong."

    No, I'm not. I'm just silent. If I gave voice to what I really feel, I'd physically and mentally crumble and I can't afford that. It's not strength, it's just lack of a safe space to be as weak as I actually am. 

Related: "You'll keep fighting."

    What? What is fighting? I do the treatment, I suffer and I wait. There is no fighting. Nothing I do or don't do has any effect on the cancer. It's all just suffering. And at some point, there will come a time when I can't "fight". What then, am I a loser? There may come a time when I refuse more treatment. For the love of god, when I quit "fighting" respect me. Every day, someone in one of my support groups dies. They "fought" the same as me. Cancer doesn't fucking care.

"You have so much to live for."

    NO FUCKING SHIT. We all do. I'm 100% aware of how much I love my children and how much they need a mother. That love has zero effect on my ability to be cured of cancer or how much I can tolerate the suffering of treatment. This is the cruelest "well meaning" thing people say to me. It's also sexist. I wonder how many sick fathers get this same platitude. Also, I WANT TO LIVE FOR MYSELF. Big secret---kids are not the first thing a critically ill person may think of. It may be, as it is for me, themselves. I want to live not for my kids, not because of my kids, but for ME to enjoy my kids. But first, I want to live for myself, as a whole person separate from being a parent. I am more than a vessel for my children. 

"It could be worse."

    Could it? What flavor of dying is better? Yes, there are versions of my cancer, of all illnesses, that are "worse" or where treatment is more debilitating. But it's all dying. It's all suffering. It's all terrifying.

"At least they caught it now."

    Yes, catching it now is so much better they say. Better than what? I would rather not know. Because knowing now is still only knowing the risk, the ax over my head, the doom. Not knowing was freedom. And no one knows, or at least they won't tell me, if finding the spread now truly improves my outlook. Because all we really learned is that it's still lurking, and the scans can't see it. So, it just confirmed that I'm a walking game of pop-goes-the-weasel. It's gonna get me, and I have no idea when or where. 

Today my therapist advised sitting with the emotions, all of them, that are here and that will come. She also approved all the ice cream.

At The Speed of Cell Division

Well, that was fast. 

I had a clear PET scan on August 24th, just a day before my prophylactic hysterectomy surgery. A week after surgery, when meeting to review my medication switch, my oncologist reviewed the scan results and used the word “remission”. It was the first time I felt truly hopeful and relaxed. I even asked awkward Dr Puffer for a hug and he obliged with a smile. I’m not a hugger, he’s not a smiler. It was a great day.

 

Paulie said, and thus cursed us, as we drove down the familiar hospital drive, “Well,we won’t have to be back here for a long time!”

The total hysterectomy surgery had gone well, no complications and manageable pain. In my mind it was the last step, the last hurdle, in my treatment. I had decided some time ago that I wanted to have all potential cancer bags removed at some point, but the Lynch Syndrome genetic diagnosis made that an imperative. Lynch Syndrome raises my risk of uterine cancer by 60%. Medication (Tamoxifen) can suppress estrogen, which fueled my cancer, but ovary removal and a different medication (Aremidex) is even better. So, bye bye cancer bags. 

The past three weeks since surgery I’ve been resting and adjusting to the new anti-estrogen medication (called AIs or aromatase inhibitors). Basically, life without hormones. Not a huge sacrifice, and I felt fortunate to have the option. Feeling pretty good, like I crossed a finish line.

 

So…about that other shoe.

 

On Monday, the test results from the hysterectomy pathology came back. There were breast cancer cells in my ovaries. 

 

That means the cancer spread beyond the “region” and did not have a complete response to the Chemolite™️. Though it’s not back to square one, it’s a set back, and completely unexpected. This is quite a rare occurrence. In Dr Puffer’s words “I couldn’t believe what I was seeing on the screen. I really don’t know what to say.”

 

And I don’t know what to feel. I was so excited and free, I didn’t even write that celebration blog yet. 

I’ve said before that the first thing cancer does is take over your schedule. So, I’m in a familiar place again, the hospital and lots of tests. Yesterday an ECHO to test my heart again, and more blood work. Next week is a brain MRI and a bone density scan. All in preparation for beginning an oral chemo regime (Lapatinib). It’s not as rough as full on IV chemo and hopefully I tolerate it as well as I did the Chemolite™️.

 

It may not be as rough but it sure feels like a major blow.

Life and Photosynthesis

Mom: “I finally figured it out! I finally realized why you got so into plants!”

Me, and all my house plants around me in the corners, listening.

Mom, enthusiastically: ”You were desperate to keep SOMETHING alive!”

.
.

.

Me: “You mean I was interested in being surrounded by living things?”

Mom: “Oh, yes, that does sound better.”

Using Your Words

I think a lot about Charlie going from age 3, still potty training, to age 6, starting first grade, during The Pandemic. And The Cancer. It’s been tough on the little guy. On all of us.

He can be demanding, he talks constantly (and I mean CONSTANTLY), and he’s stubborn. And he hates change. And he’s inflexible. He’s also incredibly quick minded and loves a debate. Did I mention he’s stubborn? I have had many days when I was at the bottom of my parenting skills for this style of child. 

But lately, I’ve had break through moments. Not him, he’s the same Charlie. But I’ve had a few aha parenting moments. I managed to listen at just the right time and the little bugger said some profound things. Things like “Thank you Mama for talking to me like that, I like it when we have these big talks.”

Noted kiddo, noted. More one-on-one talks, got it. I’ll do more big talking, you do less discussion of “Mama’s diddly do” at school…deal?

 

Renovations and Revisions

I had my chest revision surgery on Thursday. Some women are built so that the initial mastectomy surgery, if they go Flat, leaves a pleasing flat and smooth chest. Others, usually those built like me, are left with a moonscape of craters and lumps. Needing second surgery, usually a day surgery and relatively minor, isn’t unusual.

I had, as my child described it, “two little matzo balls” in the middle of my chest. The extra skin where the stitches came together under my arms left me with annoying flesh pillow corners, called dog ears. The center nubbins were always sore, and the difference between contours of the radiated and non radiated sides was very noticeable. The non cancer side had what we named “the crumb catcher”, an odd fold of skin by my rib cage.

I’ve been very content to have chosen AFC (Aesthetic Flat Closure). Fewer surgeries, less risk of infection, no foreign objects in my body. And after a lifetime of backaches and blouses that wouldn’t button, I feel lighter and sleeker. But the final results needed some work.

I’m very sore, and bruised like I was in a car wreck, but this is the first procedure that was completely  my choice and solely to make me feel better.  I had to wait a year after radiation to get the revision surgery done, so it was a very happy day.

Also a long time coming is the upstairs renovation—dividing the large bungalow train cars of oddly shaped rooms into proper bedrooms and putting in four—-FOUR—-closets (!). One wall came down, two more went up, and the oddball cupboards and arches got filled in. We salvaged four of our original solid wood doors; after stripping and painting they look amazing. (How is it possible we still have five more unused doors in the basement?). We started the project a few weeks ago, the painters are almost done, it should all be wrapped up soon. 

So, I’m sitting up recuperating in my comfy bed, hoping the skin under my bandages is smooth and pretty, enjoying the new pocket doors and cheerfully painted walls.

OMG I just realized the paint color I picked is nipple pink. 

Abortion Made Me A Good Mother

I’ve written and rewritten todays post, alternating between feeling bold and feeling uncomfortable. Here goes bold:

Abortion made me a good mother. When I was 17, my birth control failed. I knew immediately that abortion was my choice. I knew I was supposed to feel bad about it, and I did some performative dramatics about it, but truly all I actually felt was deep relief. And a little embarrassment.. I WAS careful, I did know how to prevent it, I thought I did everything right. It still happened.

But what didn’t happen, thanks to a legal abortion clinic in my state, and a wonderful doctor and nurse team who cared for me with respect and kindness, was the implosion of my life. Or my boyfriends life. He went to college, I went and did my thing. We avoided poverty, disrupted education, coerced marriage and a handful of other negative things. Also we didn’t have a child. Because we didn’t want one. And that was my right. My choice, and the absolute right choice for me.

Ten years later, it was the right choice again. Again, I was careful, and it happened anyway. This time was harder, I was older and “should” have been ready, but my boyfriend was not supportive, and I was broke, drinking a lot, and suffering with depression. I felt a little bit worse than the first time, but mostly because I loved a guy who didn’t love me back the same. I knew, again with relief, that I made the right choice. I couldn’t parent then, and not with him.

Another ten years after that, I have a wanted pregnancy that ends in a miscarriage almost immediately. Then, quickly after that, a successful pregnancy and my family begins. The family I knew I could support, knew my body and mind could handle. The family I could never have had if I was a teenage mom or an unstable parent. 

Why do I even need to explain or defend myself? Self determination, the ability to decide if and when to reproduce, was fundamental to my life, to my growth and ability to be a contributing, stable person in this world. It was my body, my life, my health, my path to choose.

That has been taken from us, taken from our kids. I thought it couldn’t happen, but here we are. I don’t know the path ahead, how we restore our full rights. I know that I am grateful for the people who fought before me, and I am indebted to them, for the realization of my full potential, and for my beautiful family. 

Family Project

It’s the most embarrassing time of the year.

The windows are open and

Mama is hopin’ that no one can heeeear!

The family is yelling, the neighbors are selling

To get out of heeeeeere! 

It’s the most embarrassing time of the year!

There’ll be voices to lower,

Unless there’s a mower!

Siblings are out of control

Soon the whole block will know

It’s the most embarrassing time of the year!

 

 

 

 

This Again

Me: I’m exhausted. I sleep all day and am still exhausted.
Radiation Oncologist: Fatigue is normal after treatment.

Me: I forget things, I can’t focus, I feel like a constant failure at work, I’m easily overwhelmed.
Therapist: Try making lists.

Me: My nails are still brittle and cracking down to the quick. 
Nurse: Oh nails are the worst, they take the longest to go back to normal after chemo.

Me: My joints ache so much and I feel weak. 
Physical Therapist: Do your exercises!

Me: My tongue is gross. 
No one: nothing, because I didn’t tell anyone about that, ick.

Me: I’ve gained ten pounds really fast. 
Oncologist: So good to have your appetite back!

My period: Vanishes, then stays for twenty days.
OB/GYN: Let’s do a transvaginal ultrasound and then a hysteroscopy!

Me: I am more depressed than before.
Psychiatrist: Let’s try adding a new med.

Me: I’m cold all the time, I can’t get warm. 
Husband: I turned up the heat. 

Me: Maybe we can just double check and do a thyroid test?
My thyroid: IT’S ABOUT FUCKING TIME

 

*I have radiation-induced hypothyroidism. The radiation field for breast cancer can often get close to the thyroid gland and cause this problem. My radiation treatment was even higher up the neck and literally aimed directly at the damn thing, so who knows why I wasn’t screened more proactively…Anyway, it’s a relief to know. I started medication tonight, see you in 4-6 weeks, I’m going to bed. Also, it took awhile to get the blood test because I WAS TOO TIRED TO GO.

No Harmony Yet

Start painting again they said, it will be good for you they said. It will help your anxiety my therapist said.

So far my accomplishments include spending the kids college funds on supplies, hiding off camera during video classes and defending my water bowl from Stevie the cat.

A few sketches and paintings have worked out as intended, but, in the way paintings can do, a few images have turned against me. This little house in New Harmony, Indiana for example…I’ve been up nights trying to get the damn thing right. A happy little travel study has morphed into a frustrating test of my patience. 

Like the end of active cancer treatment, when I “should” feel healed and happy, it’s a work in progress.

Late Stage Romance

“Sorry honey, I had a big cabbage slaw salad yesterday.”

“That’s ok, I just dropped a huge bomb in the bathroom”

Happy 10th anniversary my love. 

Wanna Try That Again?

I’m helping Mom complete an online health questionnaire, an important one for an upcoming appointment. It’s long, it covers a lot, and it’s challenging to do even without vision loss. I’m reading from the screen…

Me: “Ok, Mom here are the social support questions. Answer either True, Mostly True, Somewhat True, False, Mostly False, or Somewhat False—‘I have someone I trust to help solve my problems.”

Mom: “False”

Me: “Really, are you sure about that?”

Mom: “Totally, I don’t trust anyone to solve my problems”

Me: “No one? You have no one to help with your problems?”

Mom: “Not that I can think of”

Me, laugh yelling: “MOM I’M LITERALLY RIGHT HERE HELPING SOLVE YOUR PROBLEM!”

My favorite part was Paulie snorting from the other room.

Wonderful, Lovely Disaster

I haven’t hit upon a charming story to tell about our First Born Spring Break Road Trip. It was fun…but it wasn’t. The weather was crummy, and I was sooooooo tired, but that wasn’t the problem. It just wasn’t…the same. Some parts of the journey felt as heavy as the cloud cover; the buoyancy of the past trips was missing.

Two years have passed since our last Spring Break Road Trip. Two terrible, roller coaster, frightening, serotonin-sucking years. I’ve changed, I’m still changing. Mom is slowing down. Felix is no longer content to be toted around odd museums and yarn stores, he wants to DO KID STUFF.

My sister saved the trip. I would have curled up into a whimpering ball if it weren’t for the distractions of her personal Memphis tours, warm home and lovely meals. And thank heavens for their trampoline.

As Felix launched himself in it, I saw, right in front of me, in his rare genuine grin, how desperately we need some lightness. Some relief, some perspective on our troubles.

Tonight, when I bemoaned my day as a disaster, and called myself a total disaster, Felix said “You're a wonderful, lovely disaster”. He hugged me tight…

…then, his thin arms still around me, he asked for more iPad time. Kids, they bounce back. 

What Is Normal?

I’m alive!

Crap, I almost died.

Wait, I could still die of this, I’m just in remission.

Chemo worked! Hooray for medical science.

Chemo nearly killed me, how the hell did I get through that?

I’m so happy the scan was clear.

I’m so angry this happened to me.

Omicron! Back to masks!

Spring! Off with the masks!

 

One of the side effects of the cancer defense drug Tamoxifen, which I started taking again this week, is intense mood swings. This also applies, I can say now from experience, to cancer “recovery”. 

I’ll take it over the alternative, of course. But like all things we survive, it doesn’t make you stronger, it just becomes part of you. The new you. The new normal.

“Mom Tries” Award Winner

 

I’m processing last week’s good cancer news, though it’s been a confusing jumble of emotions. Switching from crisis mode to maintenance mode is not speedy. I feel that I am experiencing many of the emotions I set aside in the past sixteen months, unleashed all at once. Also, I have medically induced PMS (another story for another day). So, I’m fun.

The kids are continuously processing their losses and fears as well. Some days are deep discussions of death and questions about religion; other days are equally emotional requests for pizza and Mario Kart.

The world is also a tumultuous jumble of loss and fear…and war.

I’ve been extra careful not to talk about scary world events around the kids, so instead today I decided to tell them that the neighbors dog died.

🤦🏻‍♀️

The Cheese is Free (for now)

Cheesy triumph pose, Bayfield Wisconsin 2021

It’s cliche and cheesy, the breast cancer survivor photo. This one was taken after I made it up a steep walk through a root-covered woodland park in Bayfield this September. I was celebrating using my last squeeze of strength that day, and most satisfyingly, having surprised my family. They thought I was resting on a bench waiting for their return. I thought I was resting on a bench waiting for their return! But after they disappeared into the leafy ravine, I willed myself to get up and try.

I was only five months out from the double mastectomy surgery, about two months out from the end of radiation. I had extreme radiation-related fatigue (intense!], trouble breathing, and was not even half way through fourteen rounds of Chemo Lite™️. It was a little dirt path, more closely resembling a shortcut trampled into the vegetation than a trail. It was not designed to be hiked. I, too, am not designed for hiking. But I did; I gathered my strength and slowly made it through. 
     
In all it’s corny, cheesy, arms up glory this shot is also a fitting image for today’s news.

Yesterday’s PET scan shows No Evidence of Disease. No lesions, no spread, no enlarged lymph nodes…there is no detectable cancer activity. NED—No Evidence of Disease the doctors say. Sometimes called remission.

I call it the top of a very long, very tough climb.

Pickle Jar

 

I’ve been dragging my chemo-fatigued ass across town each Thursday night after work, shuttling Felix to his rock climbing class. The parking is terrible. It’s dark. I worked all day. And it’s cold. Did I mention the parking?

But I love seeing him suit up on his own and scramble up that wall with growing confidence. And I adore our time together, just the two of us, encouraging each other.

Tonight, I had a conflict and Paul took him instead. And tonight Felix, for the very first time, MADE IT TO THE TOP!

I screamed with excitement when I saw the picture. And then I screamed goddamn it I missed it! Am I a sports parent now?

Sweet Spot

photo by Charlie Rossetto, b. 2016-

Lemons are my comfort food. I slice them and eat them straight, I have since I was a kid. Not great for tooth enamel, but excellent for eating my feelings. Mom once sent me a boarding school care package that contained only a Prange’s sweater, two sleeves of saltines, and a bag of lemons. Oh, and a post-it note that said “mom”.

I’m in a bit of a seasonal funk and have been taking a bowl of lemons to bed each night. Today, Paulie ran to the store for a few essentials…

Mind of someone who does not have SAD: “I got you Meyer lemons, I thought you’d like them because they’re sweeter?”

Mind of me: BUT I WANT THE SOUR

Creativity

It’s cold and miserable outside, and I’m forced to work from home again (thanks a lot unvaccinated virus mutating hosts). To battle the predictable winter blues, I’ve done a few zoom watercolor classes and some paint sketches of our trip. It’s pleasant to doodle in my front sunroom, though I can’t decide which I prefer—the cold chill of the single pane windows behind me, or the annoying crinkling sound of the wind against the plastic wrapped windows in front of me. Either way, only the images I create have any warmth. 

Speaking of creative outlets—-this morning, Charlie appeared at the end of our bed with these expressive black lines on his face, hands, legs and feet. 

“Charlie, what happened?”

”I fell!” 

“Over and over again?” “Against a marker?”

Yep. From what I can decipher, he fell and happened to get marker on himself once. Then he laid down with different parts of his body against the open marker on the floor and MOVED HIS BODY to make the marks. 

The View From Here

Fairhope, Alabama 

It’s been a strange holiday season. The new variant has scrambled plans; we didn’t feel comfortable doing inside family gatherings while my body is still processing chemo for another three rounds. But after two years of practice with masks and the kids finally fully vaccinated, we can navigate a road trip and outdoor public spaces. I feel a nagging discomfort about those choices—-will we have a break through infection any way? When people say they understand, are they just being nice? What risks are we taking that we didn’t see? What time with extended family and friends have we lost that we will regret?

Is there a German word for fear of future regret?

I struggle with regret; neglecting the signs of cancer haunts me daily. When I think of dying younger than I intended, I regret the anxiety that ruled so much of my life already lived. The anxiety that kept me from traveling, the anxiety that kept me working overtime for free, the anxiety that kept me banging my head against brick walls, the anxiety that told me I’d never be a real artist, the fear that kept me from saying what I really felt/wanted/needed. Most of my regrets come not from mistakes I made in my choices or because of my shortcomings, but from staying silent, eating my thoughts and not saying simply Yes or more often, No.

I’ve said No this year more than ever before, and each time the internal suffering was so absent I didn’t even recognize the sensation. The anxiety groove in my brain had nothing to play, and I sat in the unfamiliar feeling of relief. And no one yelled at me. The terrible consequences of saying No were…imaginary. 

I’m not cured, not of cancer nor of anxiety. But it seems possible now, that maybe, I’ll be able to live with both. As I photograph my little family, I had seen them moving forward without me in the photos and in my mind. But I have put myself in the frame again, ever so cautiously saying Yes.

The Twelve Days of…

On the first day of chemo my doctor gave to me a puncture and an IV.

On the second day of chemo my doctor gave to me two mouth sores, a puncture and an IV.

On the third day of chemo my doctor gave to me three barf bags, two mouth sores, a puncture and an IV.

On the fourth day of chemo my doctor gave to me four shooting pains, three barf bags, two mouth sores , a puncture and an IV.

 

On the fifth day of chemo my doctor gave to me fiiiiive kinds of poooooop, four shooting pains, three barf bags, two mouth sores, a puncture and an IV!

 

On the sixth day of chemo my doctor gave to me six nights a sweating, fiiiive kinds of poooop, four shooting pains, three barf bags, two mouth sores, a puncture and an IV.

 

On the seventh day of chemo my doctor gave to me seven scans a scanning, six nights a sweating,  fiiiive kinds of pooop,  four shooting pains, three barf bags, two mouth sores, a puncture and an IV.

 

On the eight day of chemo my doctor gave to me eight aides a helping, seven scans a scanning, six nights a sweating, fiiiiiive kinds of pooop, four shooting pains, three barf bags, two mouth sores, a puncture and an IV.

 

On the ninth day of chemo my doctor gave to me nine fingers tingling, eight aides a helping, seven scans a scanning, six nights a sweating, fiiiiive kinds of poooop, four shooting pains, three barf bags, two mouth sores, a puncture and an IV.

 

On the tenth day of chemo my doctor gave to me ten hours a sleeping, nine fingers tingling, eight aides a helping, seven scans a scanning, six nights a sweating, fiiiiiiive kinds of poooop, four shooting pains, three barf bags, two mouth sores, a puncture and an IV.

 

On the eleventh day of chemo my doctor gave to me eleven platelets working, ten hours a sleeping, nine fingers tingling, eight aides a helping, seven scans a scanning, six nights a sweating, fiiiiive kinds of pooooop, four shooting pains, three barf bags, two mouth sores, a puncture and an IV.

 

On the twelfth day of chemo my doctor gave to me twelve email surveys, eleven platelets working, ten hours a sleeping, nine fingers tingling, eight aides a helping, seven scans a scanning, six nights a sweating, fiiiiiive kinds of pooooop, four shooting pains, three barf bags, two mouth sores,  a puncture and an IV!

Holiday Helper

Back story:

We’ve been working on cleaning up the disastrously cluttered basement, and have unearthed some forgotten projects. Paulie hung up a swinging cocoon chair for Felix, taking two or three attempts to find a spot to anchor it securely in the old lathe and plaster bedroom ceiling. He left one rather sizable hole. The Hole the kids call it. The Hole has produced a few nightmares, and at least one stink bug.

Today’s story:

Over the summer, Felix accidentally saw our Elf (of the famous Shelf). At the time I hastily invented a very unbelievable story about parents having the elf doll that then gets imbued with magical elfin spirit or some such thing. Kinda creepy really.

Anyway, I figured by now he knew the truth of the Elf, and though he still quite vocally believes in Santa, perhaps it was time to recruit him to be my Elf helper. I read somewhere that is one way to handle it when kids stop believing.

So, I explained that though the Elf isn’t real, the magic feeling is and he can now help me keep it going for Charlie. I probably spoke for too long, with too many explainationz….as I usually do when faced with what I think are Big Parenting Moments…at first silence, then—-

Felix: “Well, thanks a lot for ruining that, Mom! I believed your story!”

Also Felix: “Can I put his butt in The Hole?”

 

‘Tis The Season

Should I Eat These Crackers (nuts, cookies, olives, etc)?

Are they unopened? —-then probably not.

Are they a brand you don’t recognize or usually see in the cupboard? —-probably definitely not.

Are they fancy? —-oooh, probably really shouldn’t.

Is it December? —-Danger danger danger

 

Did you answer yes to two or more of these questions?  If so, don’t you dare eat those crackers, they are for COMPANY.

COMPANY! 

Been There, Done That

Next year, I might give the kids gifts on Thanksgiving. By that day the kids have outgrown last years jackets and are down to one glove between the two of them.  My resolve to hide their new coats, gloves and hats is gone before the pumpkin pie is.

This morning, Felix was distressed that he couldn’t find his coat. Not in the house, not in the van. He gets so anxious as it is (mornings are tough), I was glad I could be the hero and not just the parental nag for once. Up from the basement I emerged triumphant with the most amazing, most warm and most “cool” new ski jacket. Whew.

Tonight, chit chatting about our day, Felix said he felt guilty about ruining a Christmas surprise with the coat. Then, he explained, after exploring the cool new jacket’s NINE pockets, he felt even worse that he also ruined the “cool ski pass surprise”.

Crap. The ski pass. Felix thought I had gotten him a ski trip to Germany for Christmas.

I didn’t.

What I DID do is get him a second hand ski jacket that has BEEN to Germany.

Bless his heart, he thinks that is EVEN COOLER.

 

Joy Is For Everyone, isn’t it?

My favorite ritual is nail night. Charlie pulls up a chair and plays salon. The first time that he asked “Can I tell you about my day?” I thought oh can you ever!

Sometimes it’s his actual day, but more often it’s a pretend day, all the yummier.

Charlie: “I went on a journey with my family for work. We took a train, to Texas, yes Texas I think. We had to inspect some some concrete, yah concrete. Then we built a house close to Japan. Then we came back home for a little snack and then I came here”

Mama: “Wow, sir, I bet you are ready for some pampering! Let’s pick colors”

Charlie: “I’d like the blue grey for my fingers and the bright pink for my toes because it reminds me of my kids.”

And so it goes, as he wiggles and I dab, I learn about this guy in the concrete business who has two kids, is divorced from their mom, but takes them all on his train trips….

…Until the five year old returns and asks me in a quiet voice to remember to take the polish off on Sunday night so the people at school don’t tease him again and say that nail polish is only for girls…I hate that part.

 

Fuck It Friday

In a valiant effort to reduce our TV time, we’ve designated nightly themes—Monday Movie Night, Tuesday Game Night, Wednesday Art & Crafts, Thursday Cozy Book Time, etc.

We love TV, and our iPads and our phones and I don’t feel any shame in that. We consume what I think is the very best in education and entertainment…The Muppets, The Simpsons, etc. But winter is coming; when it’s dark and cold we do screen overload.

So, week one of Mama’s big plan. We’ve watched The Little Mermaid, played something called Clack!, doodled and painted, and had a nice quiet evening reading.

We've also had a long week—math homework, customers, bloody noses, Big Meetings, doctors appointments, holiday anxiety, moody meltdowns and all the usual chaos. Tonight, we’re done—

I’ve been in bed since five, Paulie ordered two pizzas, the kids went through a six pack of soda, all the iPads are in use simultaneously and the TV is playing YouTube videos.

We call it Fuck It Friday.

How Blue Is The Sky There?

I have an email account for Felix just for the purpose of two apps, a by-product of Covid remote school. Sometimes I look at it to see what it’s like to have an empty inbox.

To feel the cool, fresh breeze against my brain. The nothingness, the sweet calm.

No one asking “Did you get my last email?”. No one reminding me to resend the attachment that was, in fact, attached. Not a need to reply “per my last email..highlight highlight highlight”. No chains of Reply All that have NOTHING TO DO WITH ME OR MY JOB. 

What is that like? What color is the sky there? Are the birds always singing? When I see the blankness of that screen, I hear birds. Sweet sweet birds.