girl at large

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.

We All Have a Strength

Charlie asked me to explain Daylight Savings Time to him on the walk to school today. After fumbling and failing miserably as we walked across the school yard, I said “Shush we’re walking through all the sixth graders and I still have anxiety.”

I then proceeded to explain Anxiety with the knowledge and confidence of a TED speaker.

History zero. Mom one.

 

 

This Again

Some of it is rather twee, and I am very very rusty, but I’m doing this again.

And by this I mean spending all my money on supplies.

No Shit

My nurse navigator shared some “interesting news” with me this past week. At a big Breast Cancer conference, a study was released that shows Kadcyla (my post surgery infusion chemo) is radiosensitive.

In layman’s terms, it makes the side effects of radiation much more intense, and they start sooner.

NO SHIT I TOLD YOU FROM THE FOURTH RADIATION DOSE.  

Apparently they are now revisiting all their patients on the same regimen currently in radiation and “watching them closer.”

You’re welcome. 

I’ll never forget saying I can’t swallow and they said “already?”

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.

 

Eat Pray Paint (barf)

I’m taking a watercolor class this morning. I don’t like school. Cancer has been hard, but school was my first trauma. Charlie gave me some drawing advice: “Remember to do as many details as you can”.

Mom said I’m going to love it. A Saturday morning watercolor class during breast cancer treatment, a middle aged woman trying (again) to paint— it’s so cliche. 

If I walk in and smell the menopause, I’m outta here.

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.

In The Company of Dangerous Men

You were arrogant, and set me up to be attacked. You literally lay in wait for your moment to belittle me, a stranger to you.

You enjoyed being superior. 

You, who do not know me at all or our company’s history or policies, called me a hypocrite.

 

You opened our relationship with an attack that you enjoyed doing. Your body language (leaning back in position of power, tapping my business card, legs crossed) said I’m pulling a power play and I’m enjoying it. 

 

Me, in the position of lesser power because I am your guest, I am trying to keep your companies business and I make my living literally by whether or not you buy from me, AND because I’m a woman, had few choices.

 

When I tried politely to tell you what it was like to be us, how you were WRONG, you spoke over me, interrupted me and argued meaningless points like “stormed out” vs “walked out”.

 

At one point, in pathetic desperation, you pointed your finger at me and accused me of being biased. Why? Because I lumped you and your companion in the same category, the category that suffers from so much bias (eye roll). That category is “rude people”. If you don’t rein in your companion’s atrociously bad behavior, guess what, you are also guilty.

 

You took every opportunity to prove your weak WRONG point, and didn’t consider for a moment that you could be wrong until I showed a visible emotional reaction, stood up to leave and told you that I couldn’t work with you.

 

Only when threatened with me quitting/firing you did you stop to consider my position.

 

When you did apologize you didn’t apologize for your initial behavior or your behavior at our meeting but for “causing you stress”. A classic move, blaming my reaction to the problem instead of owning your WRONGNESS. You made it about my feelings instead of your feelings which were superiority, inferiority (because making this point was so important to you I assume you are actually quite insecure in your own abilities) and power. You literally looked satisfied when you used the word hypocrisy. It was delicious to you. You enjoyed making someone else feel discomfort and fear.

 

You were so committed to being right that you then continued to bring up another point, this one truly meaningless, just to stick it to me. Pointing out a minor website error benefits nothing except your own sense of self importance. When I said you probably have to do a hard refresh to see the update you then went BACK TO YOUR OFFICE TO DO THAT just to prove me wrong. I said well, maybe it just got missed, it’s not a big deal.

 

When I checked later, because the website is also my responsibility among all the other jobs I have to do to keep our business rolling through crises after crises (one of which has been exacerbated by anti-maskers like your buddy), it turns out you are WRONG AGAIN. I said do a HARD refresh, which is different than just refreshing your browser. The error you referred to was indeed already updated at the time of our meeting. Of course, it was my own insecurity that made me double check. Here I was, reacting to you, taking my precious time to double check a minor error WHICH DOES NOT MATTER.

 

It only mattered as a tool for you to again show your arrogant superiority over me and make me uncomfortable while trapped in your presence.

 

You are an asshole.

 

 

The Dork Bucket List

Earlier this week a colleague said they would soon be turning forty. I said congratulations, oh your forties are going to be great! He shook his head and raised his eyebrows, incredulous…what? 

I always knew I’d enjoy being any age but 20. I recall my thirties being the decade of anger, but a good motivating anger. I felt confident that I would hit my stride in my forties. I’ve also been fortyish for quite a long time…

At 16 I stole my parents car to go to Chicago to visit the museums.

When I was 28 I really really wanted to go on a cruise of Norway that featured tours of ancient mills and tapestry museums, guided by a textile historian. 

When I lived in France, I took painting classes at a holiday destination designed for retirees, which I adored.

When I was 35, I couldn’t get the coastal weekend place I really really wanted because it was a 65+ community.

These were also my peak crochet years.

It’s not a secret that my mortality is on my mind, that this summer’s weekend adventures are bittersweet and often booked with a frantic sense of doom. Restricted by covid, treatment schedules and reality, my travel bucket list no longer includes Denmark, Japan, South Africa, Spain or even Canada. It’s now the Wisconsin bucket list. 

This weekend’s adventure was in beautiful Bayfield. We ended our visit with a walk around town. As we turned a sunny corner, right there in front of me was an unexpected reminder that I’ve always wanted to visit every standing Carnegie Library…a physical reminder of all the dorky things I want yet to do.

All I really want is to be middle aged for a really really long time.

Seriously?

Covid limbo work times have been interesting, and odd. We are busier than we have been in months.  Eighteen months of pent up demand has been unleashed all at once. Also unleashed—every bad customer’s bad behavior. 

This week I had a live chat customer who asked a question that required a little research. I asked if I could email them the answer later in the day.

”I prefer not to give out my email address”.

Um, ok. Bwaaaahaaaa. On my side of the LiveChat interface I can see their IP address, how many times they’ve visited the website, what pages they’ve visited and for how long…and a live map of their location.

But ok, keep that email to yourself. 

The Path

As school starts and summer ends, the weather shifts, and annual transitions begin again, I’m experiencing intense emotions about my diagnosis and treatment. 

Previously, I didn’t understand the anniversary trauma that others felt about deaths, divorce or other losses. It confused me—surely you feel grief at any and all times of year? Why is an arbitrary date on a wall calendar more upsetting than any other day?

Now, I get it. For me, it’s not the specific date but the repeat of the markers of time. The return of the same season. The repeating events like back to school, getting mums, putting up the storm windows. Those things you do now that you did then too, or at least until your world stopped.

Cancer owns your schedule. The first thing it does is stop time. Then it overtakes all your plans, current and distant.

I’ve mentioned invisibility before, it is here again. I feel physically better than I have in months, I have been able to enjoy many more activities and look more like “myself” now.  My skin isn’t so grey and my hair is back, though ironically it is more grey. I am visually much “better”. 

This pain now is inside, invisible, and it is intense. I’m reliving the diagnosis, the walk down the hall to ultrasound, the devastation of hearing stage IV, the excruciating wait for bone scan results.

I will never “graduate”, I will never get a clean bill of health, I will never “beat it”. While the path after diagnosis was relatively clear—a treatment plan is a plan after all; the road ahead of me now is unknown, and I’m really scared.

 

The Subtypes

The Mozzerella  (a solid packed in water)

 

The Club Sandwich (layers of constipation and diarrhea)

The Scooter (sometimes also called the Squeezer)

 

The Pressure Washer

 

The Hot Pressure Washer

 

The Fluffy 

 

The Green Monster. (You ate nothing green, you drank nothing green, it’s just green for no reason)

 

The Sequel (I didn’t like the first one)

 

The Last Train (one more time before bed)

 

I know it so well and yet I still can’t spell it.. diareea, diharehea, diereha…diarrhea!

 

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? 

 

Summer of Confidence

We went to the pool today. I had enough energy to do two things, which is a lot. Charlie, who is afraid of the shower, spent an hour directly under the spray nozzles getting drenched.

Felix showed off his head dunking, bubble blowing and dog paddling. The bike riding continues to be a success, and he now has permission to ride down the block alone. I rarely worry about my oldest; he’s cautious, thoughtful and always observant:

“Why do they call it a milk shake? It’s already made, it should be a milk shook.”

Little Wins

Last spring, as we settled into a work-from-home, school-from-home, freak out-from-home routine, I often felt helpless. Helpless to stop the pandemic, helpless to keep my job afloat, helpless to keep my parents and in-laws safe…I knew how to hunker down; the 24 hour domestic family maintenance wasn’t hard. It was a lot like maternity leave, which still felt recent.

But the unknown. The uncertainty. The lack of answers for the kids. I didn’t know what to do. One evening early on, I gave the kids donuts in bed because I thought we might all die and that would be a nice final treat. I wanted to comfort them like that scene in Titanic when a mom tucks her two littles into bed. Dramatic I know, but in the early days we didn’t know how it spread, didn’t know how deadly it was, didn’t know anything except that someone I worked with died in his bed after feeling ill just a few days.  Anything was possible, including the worst. And for many many many, the worst is exactly what happened. 

Most mornings, we walked the kids over to Mom’s. Felix tried his scooter. He fell. He walked it some days. Other days he scooted a bit. And then, one dappled day, he was gliding down the block.

I cried. It was the most beautiful thing I had seen in a very long, anxious time. He was free, like a scene in The Ice Storm when the girl glides her bike down the hill, unaware her mother is watching with awe and envy.

Today, more than a year later, we are safer and yet still unsure. The unknowns are more unknown.  Sandwiched between the start of the pandemic and whatever phase this is now, was also cancer and loss. Every day has been a singular challenge.

And also today, out at the playground, Felix tried his bicycle. He rode in a sweeping arc, smooth and free. It’s most gorgeous video I have ever seen.

A bit dramatic, I know, but Mama never learned. And I’m so damn proud. 

You Are Not Entitled To My Life

“I’ll need you to be masked”

“That’s ok you can wear a mask”

“I know, but I also need you to wear a mask”

“You need ME to wear a mask?”

”Yes”.

”We can talk about that back in my office”

“I’m not meeting with anyone who's not masked, just like my email explained. I’m immune compromised, I’m a cancer patient”.

“I’m a cancer survivor too. And I’ve already had it”

“I’m in active treatment. Please wear a mask”

”It’s a pain”

”It’s my life”

“Fine”. Asks receptionist for a mask.

“The mask they gave me sucks, I’ll have to go to my car to get a better one.”

“Ok, I’ll wait right here for you.”

“Sorry but I despise masks”

 

Thanks for valuing my life less than your mild discomfort.

When You’re Feeling Low, You Always Can Count on Pat

I was showing Mom today how my range of motion has been affected by radiation. Lifted my left arm well over my head, stretched it to touch my right ear, all good. Lifted my crooked right arm and it barely went above my shoulder…

Mom: “You have to do something about that!”

Yes, thanks mom.

 

Some other recent Pat moments include:

“You look less, you know, cancery.” As my hair was growing in.

“Well it sounds like you have a ways to go”. When I was lamenting that I just wanted chemo to be over.

“I’m not saying I’m making it up, but in my head…” I laughed so hard I forgot what this was actually about.

“You look fine”. As I adjust to dressing flat, bought an entire new wardrobe and invested heavily in Sephora. Fine? Fine? 

Oh Pat.

Little Consolation

This is Nibbles. He was lost yesterday, sometime between daycare and Nonna’s house, somewhere between backpacks and car seats and playrooms.

I found him late at night, just in time to take bedtime from tears to tucks. 

And that’s about the only thing I managed to feel good about this week. I’m feeling defeated. I’m in the last long stretch of active treatment, or so we presume, until the next scan reveals my future, if I have one. The chemolite™️ side effects are accumulating, making my energy sputter out by 2pm, and introducing a new hell of intense joint and muscle pain. Work is no longer the reliable escape it once was; as people leave for better jobs and the economy has fits and starts, it feels too precarious. And Covid is roaring back, making the recent brief joys once again scary and risky for me with my damaged immune system, and of course my kids are still vulnerable. 

Most distressing, Paul’s Dad, Rocky, my children’s stalwart grandfather, died two weeks ago after suffering a year of congestive heart failure. I will write a tribute to Rocky another day, and it may be private. It’s not entirely my place. But I do want to share that we are grieving, and I’m struggling to help my kids understand.

Sometimes it’s all overwhelming, and I just can’t do much more than scroll, or sleep, or cry. 

Some nights, you are just inconsolable until Nibbles is back where he belongs.

Rebound

I was out at a customer visit this week, the first time in a long time. It’s still awkward, I’m rusty at my in person communication, especially with new clients. Of course some new clients are also rusty with their manners, but that’s another story.

But my selling muscles will return, and now that demand is finally coming back too, the timing of my physical healing couldn’t be better. I am so grateful for that timing. Feeing physically better as the weather warmed up and being able to work as the office world wakes up has been a gift.

Me and Milwaukee are on the rebound. Also, there’s some sort of sports thing going on.

Happy and Lucky

Felix is a name that stems from Latin meaning "happy" or "lucky".

It is also the name my oldest son has chosen for himself. 

We are so happy and lucky to be supported and surrounded by love; and to be the parents of the most stoic and hilarious straight-man kid you’ve ever met.

Clear Air

I snapped today. One of my cancer care team said “warrior” one too many times and I finally let them have it. As much as my squeaky, raw radiation laryngitis voice will let me anyway.

I hate warrior/hero/battle culture. I am not any different than any other cancer patient. It’s all suffering. We all suffer. When someone just as “strong” as me dies, what does that say for the strength of their fight? The depth of their will? Nothing. Because it’s not a fair fight. Warriors choose to go to battle, heros are heroic because they choose to go in to danger when others shirk. No one chooses cancer.

Give me the space to be weak. Just because I’m not crying in your office doesn’t mean I don’t cry in my car. Telling me Im strong because I’m “doing it all” while I’m in treatment? Ugh, it’s not strength, it’s reality. I still work because I have bills to pay. I still take care of my kids because they live in my damn house (LOL).

Cancer don’t care. My doctor should.

The Growth That Doesn’t Kill You

Now that we can be social again, I get a lot of questions about my cancer. Some are kind, some are strange, most are simple enough—the basic how are you doing/feeling/coping. Once in awhile a query is profound. A very dear friend, with a talent for getting to the heart of the matter, especially when it’s your heart itself, asked “Has this experience changed how you relate with your father?”

pow. In fact, it did. 

My drive to treatment is about twenty minutes each way, thirty when I take the prettiest lake route. I enjoy it, and with the spare time I make speaker phone calls.

Me: “Hey, Siri, call Dad”

Siri: ”Sorry, you don’t have a Dad”

Bwaaaaahaaa.... so, this experience has changed Robert to Dad in my phone and in my life.

 

p.s. did I mention the friend is also my hair dresser? Skip the therapist, get your hair done.

 

Happy Happy Happy

You turn five tomorrow. Your arms and legs are thin and strong, your eyes are so round and large that in my dreams you often appear as an owl. A loud, slightly bossy owl.

As every second born knows, you will be burdened with the story of being the baby, being the squawker, the pesky little brother. My hope for you is that you get to break free from that some day and write your own story.

And it will be hilarious. The amount of energy you can summon to greet “morningtime!” is amazing, the house rings with your cheerful chatter. When you are excited, you get so animated that you literally pat your own legs with a little drum roll, as if your body cannot contain the feeling and it must be released. Charlie, you are the happiest being I have ever known. 

And, as my mother says to me each year, I’m so glad I had you.

 

Burned

Which one of these is HOT honey? Trick question, they BOTH are!

Eat a spoonful of honey the nurse said. I’m going to recommend eating straight honey the radiation oncologist said. Oh yes, you’ll have to do the honey trick the nurse navigator said. Even my own mother advised honey to sooth my sore and swollen throat, caused by radiation. Alright I’ll go for it I said…

…to all the graphic designers everywhere, please for the love of god test your product labels in dim light, with a Gen Xer without their readers on.

Holding On To The Feeling

 

We have the Adirondack chairs, we have the greenery...can we hang on to the peaceful feeling? Our trip to Kentucky’s Shaker Village was four satisfying days of gorgeous scenery, fresh air, birdsong and heavenly biscuits.

How can just one day back to treatment (daily radiation) and work frazzle me so quickly?! Deep breaths I remind myself, wistfully looking at my six hundred photos of rolling green hills, gravel pathways and spring light. Tonight I resolved to capture some of that feeling at home...

”Let’s eat healthier like we did on the trip” I say.

“Sure, you make us honey peanut butter and fan the apples out fancy just like the restaurant!” the kids say...

 

ps. Also, Charlie is back to being mostly naked.

Yes Really

Intake nurse: “How are you?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted.

Intake nurse: “Oh really? But no fever?”

Blood draw nurse: “How are you doing?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted

Blood Draw Nurse: “You’re having pain? That’s odd”

Radiation Oncologist: “How are you doing?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted.

Radiation Oncologist: “Still?”

Surgeon: “How are you doing?”

Terrible, I feel like crap. I have pain all the time and I’m exhausted.

Surgeon: “Really? At week four? But no fever?”

 

TEST RESULTS COME BACK

Nurse navigator: “You have an infection and also your red blood count is way down! Are you sure you didn’t have a fever?”

Radiation Oncologist: “No wonder, well we can’t do any radiation until you are well, you have this infection! And did you know your blood count is so low?”

Surgeon: “Oh, you totally have an infection, that’s probably causing all the pain”

Oncologist: “Your very low red blood cell counts would indicate fatigue, are you fatigued?”

Chemo Nurse: “Girl I just saw your numbers, you are so sick! Let’s get these meds in you and get you out of here”

 

Waiting Is The Hardest Part

Mastectomy feels as brutal as it looks. I thought I would feel better by now, week 4. Not completely better or healed of course, but much better than I do feel. The three drains are still in, and still producing more than 30ml of fluid each day. One of them, the bugger, likes to produce as much as 100ml in a day. There’s nothing I can do to change that, I just have to wait for my body to absorb more liquid. And wait and wait and wait...

The iron bra sensation (exactly as it sounds) has improved, but by the end of the day I’m curled up like a roll-poly bug. The swelling moves across my chest and sides and back again like gelatin. Where there is swelling, there is usually pain. I’m now able to rise out of bed from a completely flat position by myself, which is an improvement. For the first two weeks I had to be propped on a wedge with additional pillows wedged in on each side. Paulie compared it to packing in a driver for the race.

Three things I have learned during this process:

1) There is no standard of care post-mastectomy. All my online support groups are clattering with conversations about my doctor said this, that doctor said that. Even from my own cancer team, I got conflicting advice for post operative self care.

2) Infinitely more money, time, and research has gone into building fake breasts than healing chests. Just put like 1% of that please to post surgery healing and flat closure techniques pretty please, a pittance.

3) Dressing with a flat chest and finding clothes that will flatter me is not a problem. I repeat, NOT A PROBLEM. To all the dear Facebook ladies who worry that they won’t find tops that look good after their mastectomy, ahem, I see you wearing nothing but sports team sweatshirts before too.

 

In The Trees

“Everyone is different” says every oncology doctor. Recovery from surgery is no different than chemo in this regard. Ask a question, your doctor will give you the no answer answer.

 

So, I don’t even know how I’m doing because there is no yard stick. How am I doing compared to last month when I could shower, reach the kitchen shelf, drive, and put on my own clothes? Much worse. How am I doing compared to others in treatment who have drains for months, infections, seromas and other complications? Pretty darn good.

 

I was told a few times, by both folks who have had cancer and those who haven’t, that compared to chemo, surgery would be easy. “Compared to everything you’ve been through...” they said. “Piece of cake” someone said.

Nope.

 

I think this has been harder for me than chemo. Not in the way most people assume, I don’t feel that much sorrow over losing my breasts. It’s the loss of mobility, of strength, of thoughtlessly living in my body that I grieve.

 

It’s awful. 

I’m hunched forward, the skin and muscles tightened like an arthritic hand. Lightening strikes of nerve pain shoot across my chest and sides. Each movement is a pull on a slot machine of sensations. Not all are pain, but none are pleasant. Fatigue is my new base line, I have maybe three good hours a day. I can’t lift my kids, I can’t pick up anything off the ground. In a house with young children and their debris, in a life usually spent doing and making, cooking, cleaning, working, gardening, creating....this is debilitating.

I’m hopeful that physical therapy will help, and my chiropractor, and time. But holding space for all I have lost, and rejecting toxic positivity cancer culture, is important to me now. I will never be the same, and I’m sad about it. 

Sunny Days

 

Our bubble includes more vaccinated loved ones every week. The stress of waiting to qualify is gone as the age restrictions have been lifted, everyone age 16 and up in Wisconsin now qualifies. I hear fewer anecdotes about not being able to get an appointment and see more postings about “no waiting” opportunities, so it seems the entire vaccination process has improved.

For the first time since last March, Viv was able to visit Nonna. Hugs and coffee in her lovely sunroom, an impromptu knitting lesson. Such normal, small things. So profound I can hardly look at the photos without tearing up.

We have hoped for this day, I have feared this day might not come, we have judged our every move from getting groceries to attending school on its possible effect on this getting to this day. We have endured hospital stays where we couldn’t see each other, holidays apart, long nights scared that we might lose someone before we saw them again. 

I am deeply grateful for science, for logistics, for pharmacists, even for website builders. The string of people required to get those shots in our arms, it’s amazing.

Despite all the current social chaos, the heated climate (both figurative and literal), we are an amazing society when we want to be. 

 

Spring Is So So Close

We went for a little walk around the block last night and Charlie said “I want to go to a restaurant or a cafeteria or maybe a bar”.

We all do Charlie, we all do. 

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.

 

Pancakes

      


 

I had enough energy today to make Sunday morning pancakes. They were very handy for explaining to the kids, and a bit to myself, why surgery day is a good thing. 

Some Days

Some days, you wonder if being a working mom has cost your kids something. Some days you wonder if it’s cost YOU something. Some days you wonder if not joining the clubs, not doing the sports, if skipping the extra classes and early music/art/language classes has cost your child something or will put them behind.

Some days you wonder if you really should have that fear of losing out everyone else seems to have. Did I do enough? Should we have started piano/soccer/gymnastics/swimming lessons by now?

Am I the worst parent ever for doing Saturday pancakes instead of Saturday sports? Some days the outside pressure to perform as a parent delivers a lot of internal guilt and self doubt...

...some days, your daycare sends proof! Bwaaahaaaaaaaaaa