girl at large

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?

 

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.

 

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. 

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

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.

‘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! 

Unsend Unsend Unsend

I use my work calendar as my personal calendar too, for tracking appointments and school events, things like that. And doctors appointments, lots of doctors appointments. I copy or “invite” Paulie to them so we can arrange pick ups, etc. Very handy for the usual family logistics.

Today I was double checking my schedule when I noticed that I had invited a Paul to my gynecologist appointment next week. A Paul. Not MY Paul.

To my gynecologist appointment. That I had titled “Kate’s Coochie Check Up”.

I invited a CUSTOMER.

AND HE ACCEPTED.

 

Wednesday The 13th

L
Audubon Center 2020

St Joe 2021

Another October.

Last year, during the diagnosis, I wasn’t sure there would be more Octobers. You can see it on my face, I thought I was possibly leaving my kids. In the days following the diagnosis, we walked the soggy beach, my camera thumping against my hip, tears in my eyes. I tried to steel myself for the treatment to come. I was so sad for the new reality facing my family. Even if I didn’t die immediately, I knew this experience would affect them, change the dynamic of our unit, alter their childhood. And I wondered if Paulie and I might splinter; better unions than ours have failed under less. I don’t ever want another of those Octobers.

I had my infusion on Wednesday this week, the 13th. Exactly one year ago to the day that I had my heart-crushing “Cancer Team” meeting. I was so hopeful for that meeting. The three weeks prior had been barrage of tests and biopsies, and at each appointment always the same promise of the Fantastic Cancer Team approach. The Team Meeting is when I’d meet my oncologist, my surgeon, the radiation oncologist, even the physical therapist. All those wonderful experts there to see me through this thing.

In those frightening, unsteady days, I clung to that meeting.

Paul and I held hands in the room, anxious and yet still hopeful. We were getting the best possible care, the best approach, the Team. Then a sole doctor walked in, sat down, slid the Kleenex box across the table, and said there’d be no other team members joining us. The air left the room and left my body. 

And with it, my hope.

That is how they told me I’m stage IV. I’m only now, a year later, as I emerge from the fog of treatment, absorbing how cruel that was. And how it damaged me. I’ve been obsessed about the IV, haunted by it, I can’t let it go, I can’t integrate it.

Because, here’s the thing. They had not yet done the bone scan or brain mri. But one pesky lymph node chain in my neck had glowed on the PET. That one fucker crushed my entire outlook. I wish I had known that meeting day that it was the only, little thing making me IV. 

In the torturous days that followed, I had a bone scan and brain MRI. Both were completely clear. In some staging scales, that means I’m stage III. And most importantly, it means I have no disease outside the region, except for those neck nodes.

Had we known that on Team Meeting Day, I might have actually met my team. And I would have been spared some agony.

Of course, I did eventually meet them as my treatment shifted gears when the chemo was so successful. I was not at all amused having to tell them each individually my story all over again each time. Gee, if only we’d had that Team Meeting. 

So, here we are again in misty October. I’m still fearful, but also cautiously hopeful. The family is intact and resilient, if a little hooked on doughnuts. I’m still here, it’s only my boobs that aren’t. 

Birthday Season

Marking time can be a delicate and dangerous thing for me; as another season passes and annual events return, my emotions range from contentment to despair.

Felix once asked me, at about the age of five, the meaning of “bittersweet”. After I explained it, he said “Oh, I know that feeling.” And I know that he did, my old-soul son. 

This October holds both the anniversary of my diagnosis and the birthdays of my loves Paulie and Felix.  My loves are so beautiful. The leaves are golden, the ground is damp, and the very air is bittersweet.

Strange Things About Breast Cancer

People, including friends and family, will become afraid of you. Afraid of the mortality you represent, afraid of what to say, afraid to acknowledge your tragedy.

 

Other people, sometimes surprising ones, will step forward into the uncomfortable space and be there for you.

 

Paper gowns fit no one.

 

There’s a secret code for getting a complaint, especially a pain one, taken seriously. You must say it at least twice. So rather than wait a week in between appointments, complain loudly and repeatedly at the first opportunity.

 

People take the easiest path. If I had been able to schedule my mammogram screening right in my obgyns office rather than have to visit a website that wasn’t working and then call a separate location that put me on hold for twenty minutes after which I gave up and forgot about it for a year…well, I might have caught it “earlier” and suffered slightly less. Like programs that automatically enroll folks in a 401k, with an opt out method rather than opt in, it should be designed for the imperfect human users that we are. It would save more lives if providers directly scheduled important routine screenings while you are still in your doctors office, still in that ill fitting gown.

 

The radiation machine looks like an enormous kitchen aid mixer.

 

Chemo and other breast cancer treatments can affect even your eyesight! Generally, the treatments will leave lasting changes to your body. Even those that “beat it” will live the rest of their days with painful side effects, medication reactions and surgery limitations. Our grief for the body we last had on the ultrasound table is deep and lasting.

 

I’m not claustrophobic, I just don’t like CT, MRI and PET tubes. If it was a spa bed, a tanning bed, even a middle row airplane seat, I’m ok. Scan tubes make random horrible noises, slide you in and out and sometimes oddly up without warning, like you're a hot dog on a malfunctioning 7-11 machine.

 

Straws are your friend, I underestimated them.

 

Staging is misunderstood. It’s not only about time, size or spread. It’s mostly about biology—the type of cancer cells. Take that + cell grade + cell growth speed + cell hormone receptor status + location + size + spread and then you get the stage. But stage is not the same as expected outcome. It is only helpful in planning the treatment, and even then, it’s the biology that’s informs most of that. It’s main purpose is in tracking statistics for hundreds of thousands of patients over decades. Stage is your Breast Cancer ID, it is not you, it is not your prognosis. It’s not even a complete view of your disease. *Except stage IV. 

 

*Stage IV is the redheaded step child, the thinnest last chapter of every breast cancer book, the island on which I found myself. Because stage IV breast cancer diagnosis is so closely associated with time (vs biology and location), it’s loaded with guilt and shame. The emphasis on “early detection” over the last two decades has been lifesaving, but also detrimental. Detection is detection, and disease should be detected as soon as it’s possible, and sometimes it’s just not possible before it’s location or size is beyond the region of the breast. And that can happen between mammograms, that can happen, with some kinds of tumor biology, in just months. And without a single symptom. Which brings me to…

 

Lumps. Yeah, most breast cancer patients never felt one. Most obgyns didn’t feel them. Mine didn’t. I had four tumors, never felt a single one, even after I had an MRI SHOWING ME EXACTLY where they were. They were only 2cm, and deep in my tissue. Self exams are being phased out by the worlds top two breast cancer authorities. Relying on self exams should not be a thing. Self awareness,however, that is a thing. If you notice a change in skin texture, size, nipple shape or pulling in/staying erect, or of course a lump, go in to your doctor for a screening. 

 

You get stupid rewards like bell ringing and certificates because they can’t give you a clean bill of health. That’s not a thing for most breast cancers. Even the acronym is depressing…NED, No Evidence of Disease. Not No Disease, they best they can say is no proof of it. Which also means no proof that it’s not there.

 

Surgical drains are strange! They are REVERSE IRRIGATION TUBES INSIDE YOUR BODY. Shudder.

 

White breast cancer is different than Black breast cancer. Screening rates, detection rates, survival rates, and treatment outcomes are all significantly lower in the Black population. That has to change. I don’t know how to help that happen, but I’m learning how to pay attention to it. Asking the question “How are you addressing the disparity?” of every organization I’m working with or touched by in this process is a place to start. 

 

Staying Flat, (not having breast mound reconstruction) is not a de facto option provided at all mastectomy consultations. Most patients have to ask for it, and many still face a horrible disfiguring assault on their body called Flat Denial, where the breast and/or plastic surgeon leaves large flaps of empty skin behind during surgery “in case you change your mind”. This happens even when patients clearly request Flat without reconstruction. Flat is a very valid, and very healthy (fewer surgeries, no foreign objects, no risk of infection or complications) choice. Advocates are working hard to educate both patients and providers, but it shouldn’t be so hard. 

Diarrhea comes in so many many forms. Who knew?

 

All the providers assume I’ll want falsies. Nope. Flat is good. They even say things like  “but insurance covers them!”. Um, ok, but thats still not a good enough deal.

 

The “at least” trap is inescapable. I hate it when people say it to me. “At least you caught it now”, “at least you have support”, etc. I hate it. And yet, I caught myself saying it just the other day. I think it is a natural human instinct to find the thing that can make something survivable, to grasp for that buoy. Perhaps our language around it is lacking. I will have more grace next time.

 

Where are my nipples? Like, what do they do with them? 

 

Full Upright Position

Paulie is serving us pretzels and ginger ale in bed tonight because Charlie’s class is pretending to go to Israel this week and Charlie first freaked out about going on a plane without his family, and then once we explained, was totally bummed about not getting to experience flight. Paulie brought them to us on a little tray. 

And that is pretty much all you need to know to understand just how much of a hard working, caregiving dork this guy is.

 

Holy Crap That Was Awful

This is the first three week cycle where I didn’t get the cytotoxic chemo drug in my infusion.

I had no idea.

I don’t think I really grasped how sick I was even on my “good days”. There was a predictable rhythm the fourth, fifth and sixth cycles—I was “fine” for three days after infusion (thanks to steroids which had their own awful side effects but made me feel false energy), then sick for ten days and then “ok” for seven days before the next round.

I was not fine. I was not ok. 

Today is the first day I feel like I did in September. Less a few side effects still lingering (neuropathy, finger nails, cold bald ass head) of course.

I can’t explain how chemo toxicity inhabits your entire body. And when it’s absent, your entire body is released. Like childbirth, I can already see the visceral memories of my chemo side effects fading. The suffering of this treatment phase is over, my energy is returning. 

Don't tell Paul yet, I want dinner in bed again tonight.

Love Language

 

 

 

 

Tomorrow is chemo round three and I’m sleepless on steroids and dreading it so here is a picture of how my husband arranges the kids’ treasures after a pandemic Autumn walk.

At least when he leaves a mess on my desk he does it correctly.

Legendary

Halloween 2020 is testing the creative powers of parents across the country.

Tonight I’m thinking about my greatest parenting triumph when at seven o’clock on a work night we made a Batman costume from household items (including a tarp, duct tape, construction paper and shoelaces) in ten minutes so Viv could go to the elementary school monster mash party at the very last minute and then promptly take it all off to jump around in a cafeteria with a throng of sweaty seven year olds.

We did not take a single fucking picture.

So, here is photo of Viv the year before, as Frankenstein’s monster.

 

DIY Chemo

So the best fix for mouth sores from chemo and the pain of thrush, also caused by chemo, is a prescription mixture called Magic Mouthwash. It wasn’t provided in advance, or even mentioned by my chemo nurses. Typically around 50% of chemo patients experience canker sores, mouth sores, mouth pain and/or a thrush infection. Many experience a change in taste so extreme that even water tastes bad. Water.

This is me.

After some back and forth with the nurse line and doctor, we finally got the prescription called in for Magic Mouthwash today. But it’s not covered by my insurance. The pharmacy mixes it for $138.00. Unmixed, the ingredients are $18.00.

Guess which way Paulie went.

 

This Is Not A Journey.

I have breast cancer. It’s an aggressive type, fueled by my own hormones, and like a constellation it has traveled in a great arc from my breast to my sternum, out to my arm and up past my clavicle. 

I won’t go in to the story of how I was diagnosed, why it wasn’t caught “earlier”, or the howling anguish of the last thirty days. Not yet.

Today I’m ready only to say that things look bleak but also better than they did a week ago. It’s all horrible but also I’m very lucky. I feel like shit but I’m also ok.

Journeys are fun. This is not a journey. I hope, someday, it will be just a story.

 

Crap Year, but Always a Quality Man

I’m trying to convince Paul to be on time for this morning’s grocery store pick up appointment by just going in his pajamas. He won’t do it.

“Paulie, have you seen how people dress here?! Even in your pajamas you have more buttons on right now than the average Wisconsin man at a wedding!”

Happy Birthday my love. Next year will be better. Le Mans is waiting for you. 

So are the groceries. There’s booze in that order, get going.

Winning Parenthood

Here is a photo of 3 1/2 year old Charlie painting the basement wall during quarantine to show that Paulie isn't always a softie.

Paulie and I have long argued that he dotes on the kids too much. Of course, the other side of that argument is that I am Slacker Mom. Or Strict Mom. Or just Exhausted Mom.

 

Tonight, as usual, tired Paulie was drawing pictures of the full cast of The Muppets on demand, making multiple snacks, and sitting in a chair 5" off the ground. I offered to take care of the kids the remainder of the night so he could go rest early. Two minutes later Charlie announces it's nighttime, puts down his crayon and goes up the stairs by himself. He gets undressed and tucks himself in. Viv makes them self an ice cream treat and then follows.

 

So, I'm either Slacker Mom or completely, 100% totally boring to my kids.

 

 

 

Dad Jokes

Thanksgiving at the Osthoff, 2019.

This is the first weekend away that we forgot to pack the stroller...and turns out we don’t need it. Another parenting milestone. Paulie has also reached a new level...a new level of Dadness.

We treated ourselves to a couples massage.

Me: “This will be fun, we’ve never done a “couple” thing before!”

Paulie: “Sure we have, we have a “couple” of kids!”

ba dum bum

Traffic and Weather Together on the 8s

Charliepants: "Mama, can you put on your talking show?".

Mama,smiling and thinking: See, all the NPR will pay off. Screw Paulie and his Arthur and his singalongs and his knowing all the names on Paw Patrol. Little kids DO like the things I like. I AM a fun mom.

"Oh honey, do you like mama's talking show?" 

Charliepants: "No, YOU do."

 

Papa’s Day

A little tidbit to share in honor of my kids papa whom I could not have done a better job selecting. (Yes, I turned that accolade right back to myself. Sorry not sorry I’m really proud of that accomplishment; ie: powering through my fertile thirties solo and happy).

Me: “Thanks for picking up greek food, that’s just what I needed, I’m so tired from work tonight.”

Charming Husband: “Not all gyros wear capes!”

 

This Is Why We’re Married and I Love You

I’m standing in a contraption that stretches my calf and foot to relieve the pain of my plantar fasciitis, stretching my arms up along the wall, wishing for help to pull the ache out.

Me: ”Remember when they used to put people on the rack? Wouldn’t that feel good now?”

Paulie: “And throw a little heat underneath it” 

#imnotworthy

Tonight is Charliepant’s first night in his big kid bed. While I was doing laundry or Facebooking or reading or something, Paulie made him his very own cardboard version of Bert & Ernie’s headboards.

Because, as Charlie says: ERNIEBERT! ERNIEBERT! ERNIEBERT!

(Also, as I write this, Viv is sitting next to his new bed reading him a night night story because she “likes spending time with him”). 

What They See

It’s been an exhausting few weeks.

My community is in an uproar over the highschool production of To Kill A Mockingbird, which exposed the school’s ugly power dynamic, ineffective school board governance, and of course, very loud obnoxious white lady style racism.

We spent a week vacationing with family up north, with all the emotional weight, good and bad, that entails. Note: vacationing with a six year old and a two year old is not vacationing; it’s a trip away, yes, but not a vacation.The school district’s survey to gain support for a $55m to $120m referendum came out (I’m part of a small group trying to get the financial facts and consequences out to the public). I somehow got myself on the Beautification committee of the PTO. There are fliers to hand out, doors to knock on and troops to rally. And parent teacher conferences were on Thursday.

Oh, and while we’re were at it we refinanced the house, with all the paperwork and worry that involves. On Wednesday, after five years of doing everything else ourselves in this fixer upper, we finally signed the construction contract for the complete gutting renovation of the kitchen and first floor. Good grief. Also, I guess I really live here now.

I’ve spent a lot of time these past two weeks thinking about what I want my kids to be exposed to, what kind of community I want them to grow up in, how my values aren’t always reflected in this village.

I’ve also been caught out a few times on my own internal village, how we don’t always live our values right here in this house. Teacher conferences gave me a glimpse of Viv’s world (all week she’s been telling her class stories of the wonderful time she had at the cottage!). I’m freshly aware of how we talk to each other as Charlie explores the boundaries of being a bossy two year old, tests out “No!”, and imitiates Mama and Papa with his dollies. I’m not always proud of what is reflected. 

But, I learn. And I grow. And when ashamed, I try really hard to step forward with new approaches instead of retreating into old habits.

In the end, when they are grown and reflect on their upbringing, I hope their view of their family is like Viv’s clandestine photo portrait of us. There we are, tired and resigned. But together, and with faint smiles on our faces. At the table with each other and not too much yelling.

We Met for the First Time Six Years Ago Today

You are six years old today, and right now you are a humid little lump sleeping next to me in Mama’s bed. “Mama Time” you call it. 

It’s been six years, but I still don’t know exactly what I’m doing. Each time I get confident, each time I get the routine down, you go and change on me. In the proverbial leaps and bounds you make your way through stages of childhood, often leaving me behind in the cliche dust. 

But I do know these things:

Your first best friend was named Julian and you greeted each other with a hug every day and cried when you had to part.

You say Gwanma. And Nonna. And have never confused the two.

You want to be a monkey when you grow up. And also a teacher. And a race car driver.

You are 100% right when you say pants with pockets only in the back are stupid.

Charlie will never have a better guide than you.

You own your Papa’s heart, and almost more importantly, his growth from a pretty darn good person to an amazing person.

You bite your nails, out of nervousness, and I worry about that. But you also are trying to quit, of your own choice, and quitting a habit is the hardest thing a human brain can do. So if you can’t, I got you. That goes for every thing. Every single thing.

 

Home Fires

In a stunning reversal, I like my house and hate my husband. Ok, so that's too strong, but I'm cranky this morning. And we're not seeing eye to eye. But, like all our marital storms, this one will pass.

What will stay, I hope, is my new satisfaction with the house. The painting continues, one room at time, through the first floor. We literally have just one painter working in the house each day, the painting company is fitting us in between other jobs. Which wouldn't be that unusual except that typically they run a crew for this amount of work---walls, ceiling, then sanding, priming and two-coating all that trim. The playroom ceiling had to be stripped of falling ancient wallpaper and practically replastered. Davis, whom I have yet to meet in person, arrives after we leave for work and leaves before we return. Our very own magical painter elf. This is very our style of working with the trades---not needing a schedule or having a deadlin has its cost benefits. And makes the drive home from work more exciting; oh the anticipation!

Adding to the feeling of CLEAN the paint has given the house, the three new light fixtures have changed my outlook on everything. Literally. I can now see just exactly how filthy, grungy, and dark the house was. Why did we wait so long? Oh right, because we needed a shower, and garage doors, and our own bedroom.

Paulie did put up all three lights. And installed dimmers. Ok, truce.

 

 

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All The Little Things

 

When I wore my favorite dress on my birthday and forgot that the fourth grade teacher did "birthday spankings". He made me crawl through the "spank machine" of my classmates legs as they paddled my bottom, at the end of the tunnel he put me on his lap, lifted my dress and spanked my bottom.

 

When the gym teacher asked if I could "run with those things".

When my freshman (high school) roommate came over to my bed while I was sleeping, woke me up and made me pretend to give her finger a blow job in front of her gaggle of friends to humiliate me.

Every single time someone said "but you have such a pretty face".

When the doctor, during my very first pelvic exam, slapped my thigh and said "What are we going to do about these saddle bags?"

When the school president asked "Which one is the smart one and which one is the pretty one?"

The time the guy started to go anal without asking.

The time the guy creeped his hand over to caress my thigh while his other hand was holding the hand of his girlfriend on my couch.

The time the two male business partners started talking about a female vendor: "How could someone that good looking smell so bad" as we waited for the meeting to begin. When the next party arrived, who was male and not their employee, they stopped talking.

The time a grown man pinned a sixteen year old me against the pole on a crowded train car and rubbed himself against my backside until he was yelled at and ran off at the next stop.

Every single time someone assumed that fat is an insulator from assault and a barrier to love.

 

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This Guy

We're having a little family do today. I mentioned in passing that I wished the garbage cans weren't so visible. Five minutes later, he's building a screen.

 

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Touché

"I'm disappointed, Charlie's eyes are turning dark.They were so light for so long, I had hopes they would be green like mine. Looks like they are going to be brown instead, I'm so bummed".

"Why so bummed?"

"I don't know, don't you wish a little bit that your kids look like yourself?"

"They do look like me, they have brown eyes."

 

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Nailed It

That time we were standing waiting for the Max train in Portland and it began raining and you asked if I wanted your umbrella and I said no (because I used to live there and I know better) and then you said, with admiration, "You're so durable."

That was the most romantic thing you ever said to me, because it's how I think of myself. You nailed it. And you daily nail this marriage and kids (and mother in law) thing. Thank god, because sometimes, on the tough days, I'd rather be out walking in the rain. Happy Anniversary Paulie!

 

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Darkest Before the Dawn

Parenting is a nocturnal experience. We four are still in one bedroom, in our separate sections, but still all in together. Each night is a campsite of mysterious thumps and hums; something is always vibrating. Previous silence is filled with sniffles, snores and baby wheezes. We are awakened by coughs, hunger cries, dead batteries. I am awakened by my own worry, restless until I check the crib. In turns, and as often both at once, we tend to the little ones through dusk and midnight and early dawn.

When the adult bedroom is at last habitable, it may take me many nights to get used to the quiet. Or not.

 

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47, 4, 4 months

Yes, those are birthday candles in corn muffins. October is a month of milestones. Paulie turned 47, Vivi turned 4, and Charlie grew into his 4th month. Celebrations would be nice, but an organized gathering, an organized anything (!), seems out of our reach these days.

Who can bake a cake and make dinner and wrap presents and what presents? who picks up the kids and we're out of diapers and Viv needs a haircut and am I still nursing and I have to work in Chicago tomorrow and go get milk again at Walgreens.....Mostly, we are keeping our heads above water.

But in a quiet Sunday morning, at last, I can reflect. And all three of my people are asleep. Thank god.

 

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Papa Said It

"Parenting is one small indignity after another; from my robe falling open at inopportune times, to the goldfish I just snacked on that I'm pretty sure had been on the floor". -Paulie

Add to that:

-Changing a diaper on a public restroom floor.

-An Uncle asking "Is the baby under here?" as he lifts the nursing scarf away.

-Wishing I had more of those mesh underwear from the hospital.

-Closing the bathroom door for those five sweet minutes alone.

-Shaving the left leg on Tuesday, the right leg on Wednesday.

-Seriously discussing the merits of Nurse Holly's (of Doc McStuffins cartoon fame) record keeping (the Big Book of Boo Boos) with the three year old.

-Assembling any stroller, swing, bouncy chair, or car seat together without divorcing.

-Milk in the cabinet, coffee beans in the fridge, toothpaste in the kitchen, crackers in the bathroom.

-Asking "Is this poop?" more than once a day.

 

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Five Weeks

Charlie is five weeks old tomorrow. I have aged five years. Some highlights:

-"Am I wearing pants? Not 'should I wear pants', but can you tell me at this moment do I have my pants on?"

-"They are so cute so that you won't kill them" (thanks Grandma)

-"The sheets were always so scratchy" (birth story from another era)

-"Your boob looks like a weapon"

-"Uh oh mama, he fell off your boob!"

-The third sling is the charm. Or the fourth...

-"What are you going to do for three whole months?" (Apparently maternity leave is a vacation)

-We have enough baby blankets. What we need is a Walgreens platinum card. That's a thing, right?

-"It goes up his butt til the stopper then you listen for the whistle"

 

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One Row At A Time

 

The bathroom is finished! It took a year, but at last we have a working sink, toilet AND shower on the second floor. Our tile guy, dear and beloved Scott, did our job moonlighting between a day time tile gig and a night shift driving gig. So, one row at a time, over the past four weeks, our complicated patterned shower tile was installed (and Scott was made dizzy).

And of course, a shout out to this guy, for doing everything else that makes a bathroom a bathroom (and a house a home):

 

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The Ring of Fire Is Not About Johnny Cash

The second baby is both easier and more difficult. I knew what was coming, so I dreaded labor and delivery. My experience with Viv was so tough, I feared a repeat. And no, "getting a healthy baby at the end" does not erase a bad birth experience. It certainly helps over the alternative, but a crummy time is a crummy time.

The birth plan this time around was certainly more flexible (and less lengthy--"Take it as it comes") but still focused on as natural as possible. When baby was breech at 36 weeks and my conservative OB/GYN firmly announced it would be a c-section if he didn't flip by 38 weeks, I was in a panic. I saw the chiropractor every other day, did accupressure and stood on my head for twenty minutes each night. A surgeon's daughter avoids surgery like the proverbial plague.

Lucky me, it worked!

I was so relieved to avoid a scheduled c-section that I didn't see the preeclampsia coming. A few spiked blood pressure readings didn't alarm me, but sharply declining platelets and scary liver function readings did. A scientist's daughter also knows when to trust the numbers. It's a good thing I'm so organized and had wrapped up work a week before my due date, because it was time to get that baby out!

 

-When faced with an unknown, Paulie goes to his comfort zone. As we were scrambling out the door Saturday morning for the emergency induction, he vacuumed the cars. Both cars.

-When your childcare plan (i.e. Grandma) says they are going on a winery tour the weekend before your due date, be sure to ask WHERE. Do not assume it's local. It's more likely, inexplicably, in Appleton. By charter bus.

-Intravenous Magnesium is the devil. The devil that saves your life, but the devil.

-I've never been so happy to get a catheter. Or had such a deep, meditative exchange with an anesthesiologist.

-Doctors tell, and you think you understand and nod your head like you understand. But after the doctor is out the door moments later, the nurses interpret. And then you truly DO understand. You understand that the nurses do everything. And then they also clean up your food tray.

-"Why does the window hurt so fucking much?!?" I asked Paulie over and over during transition. I had an area in my abdomen, near my hip that the epidural didn't take effect on. It happens sometimes. The nurse explained it to me, calling it an epidural "window", while Paulie was in the bathroom. As he leaned over the bed to comfort me, he was so perplexed when I grunted "No, godfuckingdamnit it's not about the blinds".

-Pushing when I felt like it, as I felt like it without the sitcom "push push push" count down was so much better. Pulling on a towel like a rope, with both Paulie and the doula pulling in the other direction was brilliant. That baby popped out in thirty minutes!

-A doc who saves your stuff (as one observer noted "She worked the hell out of it") is forgiven for all else.

-My hair looked amazing.

 

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Dad vs Daughter (or Science vs Disney)

Viv: "Look Papa, that airplane is making a line in the sky"

Paulie: "That's because the turbine engine makes water and it's cold up there so it makes a vapor trail".

Viv: "Oh, it's like a magic princess!"

 

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Before & Before

While Mom, Viv and I were road tripping, Paulie was home working away on the bedroom. Out came the groovy orange closet, fluorescent lights, acoustic tile ceiling and dark faux wood wall paneling.

Underneath the 70's vintage cladding were remnants of a 70's teenage graffiti conversation, complete with sketches of guitars and booze bottles. This house has history. If the previous owners kids ever pop by, I want to ask about "taking Mary to Nino's". No need to ask about the window screen missing a neatly cut 2" square of mesh. I think I can guess.

 

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The Joys of Late Pregnancy

Me: *sneeze*! "Honey, can you get me a tissue?"

Paulie: "Here you go my love".

Pause.

Me: "You thought I was going to use that on my nose, didn't you?"

Paulie: "I did, I really did."

Happy Anniversary darling!

 

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Charlie Prep

Getting ready for Baby #2's arrival has included lots of preparatory conversations with Viv. We cover sharing, gentleness, jealousy...all the expected topics for a soon-to-be-sibling. Turns out, as I listen to our household with my mind on adding a new baby to the mix, it may be Paulie that needs the prep talk.

He has a hard time seeing Viv as the toddler she is; he is emotionally about one year behind in her development. He is frequently stunned at her ability to do things herself. Tasks I've had her do on her own for months he routinely does for her. Come baby time, he's not going to have the time or energy for all that dotage, as I remind him often. Viv reminds him too:

Paulie, behind her on the way down the stairs: "Careful Vivi, hold the railing".

Vivi: "Papa, I know what I'm doing!"

 

 

 

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Hello Charlie

We get the set! Number two is a boy. I didn't know Paulie wanted a boy until the most recent doctors appointment. When I asked him why he hadn't mentioned his wish to me, he said "I didn't want to be 'that guy'". He was totally "that guy" when he threw his arms up in the air touchdown style in the ultrasound room.

We both agree, it's not about having a boy, it's the thrill of having the set and never again having to field the question: "So, are you going to try for another?"

 

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Three

Viv is a world. She is a toddler. She has dollies and friends and likes and dislikes. She has opinions. She sings to herself. She sings to us. (We call it Toddler Opera). She is curious, she is cautious. She is simultaneously infuriating and fascinating. She is three years old.

Me, at the end of a long day: "I'm pooped".

Viv, from the back seat: "Oh Mama, in your pants?"

 

Alone Time

Believe it or not, I'm glad to have this goofball back home.

Progress!

After at last convincing Paulie that hiring another man to work on the house is not the same as having another man sleep with me, we have bathroom progress!

The crew got the shower walls framed in, the new subfloor completed medicine cabinet roughed in, and the walls prepped for tile...in one day.

We started the bathroom one year ago next week, planning at the time to complete it in only one week. I said "we will not be defeated". We were totally defeated. We surrender.

Old house, we give up on doing it ourselves. We promise from now on just to throw wads of cash at you dear Kenmore Place. Please return the favor some day.

 

 

 

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The Light at the Back of the Garage

I've never been so thrilled to see a garage wall! The two crumbling broken windows in the back of the garage were replaced with gleaming bright glass block today.

It's a small thing, but a huge improvement. The garage wall is my last view when I leave for work each day, and my first impression when I come back home after a long day. I couldn't take looking at the oozing "Great Stuff" around the frames of broken glass panes any longer. Dave the Glass Block Guy to the rescue.

Paul's Fathers Day gift may have to be painting the garage. Because, of course, now the rest of the garage looks worse by comparison. But that means we need next to pour a new floor....and add a work bench...and a while you're at it add a lift...

 

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Oops

Viv: "I saw your trunk today Papa"

Papa: "You saw my what?"

Viv: "You have a trunk like an elephant!"

Exit bathrobe, enter pants.

 

 

 

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If Not Now...

Before:

After:

Little bits of progress...or, resignation. This kitchen cabinet, the only kitchen to speak of, is supposed to be ripped out some day. But, at our pace of Demo Quickly-Rebuild Never, I've forbidden it's removal.

So, in quiet acceptance of the fact that I have lived in this fixer for two years, and will probably do so for twenty more, I painted it.

New house Motto for 2015: If not renovated, at least less gross.

 

 

 

 

 

 

 

 

 

 

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