girl at large

I like to write about life when you have a job, some kids, a fixer upper and a fatal disease.

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  • Wonderful, Lovely Disaster

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    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?

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    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

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    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)

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    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

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    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

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    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

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    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

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    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…

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    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

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    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?”