girl at large

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

recent posts

about

  • A Year in Review, More of the Same

    IMG_7355

     

     

     

     

     

    91 Doctors appointments

    54 Physical Therapy appointments

    36 Mental Therapy appointments

    19 scans

    16 weeks medical leave

    11 days in the hospital

    4 days in the ICU

    2 infections

    1 sepsis

    0 concerned calls, texts or emails from my sister and brother.

     

    The number of concerned calls, texts or emails from my sister and brother in 2023, 2022 and 2021=0.

     

    The cold shoulder is not a boundary, it’s a weapon. It’s meant to hurt. It works. It hurts. I give. 

     

    I debated a long time about blogging on this subject. I have been careful in twenty years of public journaling to broach work subjects and family conflicts with sensitivity, or in most cases, not at all.

     

    But I have to process the pain, and this is where I do that work. Here and in the paint pans. I don’t know how to describe what has happened, because I don’t know what has happened, I don’t understand it. In the case of my brother, I literally do not know. Everything was fine (well, not fine, he hasn’t reach out to me at all during my cancer treatment), but then he went from being mildly neglectful to downright hostile, ignoring me and never answering the question of what was wrong? He even blocked me and my husband. (Paulie? Really? Seriously the nicest, most clear-headed, even-keeled person we know? Blocked?).

     

    So, new landscape for me. How to process profound pain and grief while also considering privacy? How to have my say but respect theirs? How can I when they don’t participate? I’m treated as if I’m already dead; ignoring someone with a terminal diagnosis is especially cruel. It feels like a tiny death every time an email, a message, a plea is unreturned.


    I’m invisible, they’ve rendered me voiceless. Except here, so here is where I am. 

     

    Cancer makes strangers of family and friends of strangers. I know two things for certain about cancer—

     

    It takes over your life.

    You’ll be surprised by who shows up and who doesn’t.
     

  • “Can We Talk About How This Is Not Dairy Queen?”

    IMG_8282

     

     

     

     

     

     

     

     

     


    the kids and the Clauses take a coffee break

    “Can we just talk about how this is NOT a Dairy Queen?” It’s one of my favorite quotes of all time, from a visit to a local burger ice cream shack in small town Nebraska that everyone referred to as the Dairy Queen. It was not. It wasn’t even in an old Dairy Queen building. But it was a special memory. And the phrase fits any awkward situation. 

    The Kohler brochure was titled “Winter Wonderland”—horse drawn carriage rides! real reindeer! and Santa!

    The reindeer were 20 bucks to photograph. Also, mange.

    The horse drawn carriage was indeed a carriage and had real live very nice horses, but its path was around the parking lot. And around again. The parking lot.

    The shops are an outside mall, no central interior. It was cold. Windy. Cold. I lost Mom. Walking from store to store, looking for a lost woman who looks like me only deafer, I was also looking for the promised Santa.

    No Santa by the carriages, no Santa by the reindeer, no Santa in any shop. No signs for Santa, no freakin Santa! I found Mom. 

    Fuck it, come on Mom, let’s go in to the grocery store and get a hot coffee and wait for Paul and the kids.

    Paul and the kids…were inside the grocery store getting coffee! Warm, rosy cheeked, smiling. Paul wasn’t getting a coffee for me. Until he saw my face…make that a double mocha.

    It was chaotic, the grocery store and coffee counter had no defined spaces, we were flustered, the lighting was weirdly dark….I make my way to a tiled area of plastic tables and chairs, the “cafe”. I’m making my big-ass-winter-coated way through to a table for us when I realize that the occupants of the neighboring chairs are Santa and Mrs Claus…on break?

    This is it, this is The Winter Wonderland.

    No music, no special chairs, hardly any decorations, no elves. Only two chairs, the dear sweet volunteers and a cheap ass black plastic Halloween bowl of mini candy canes. 

    I had a complete meltdown. Just out of frame is me, the middle-aged woman, overwhelmed mama, head down on a plastic table, sandwiched between aging parents and growing kids, with a maxed out credit card and maxed out senses, sobbing. Which, when you think about it, really is the TRUE sign of the season. 

  • Spuds and Duds

    IMG_2189

     

     

     

     

     

     

     

     

    The kids cos-playing Republicans at the hotel.

    I really try too hard. I try to do too much, too fast, too everything. But damn it, someone has to give this sorry-ass-ragtag-dysfunctional family a nice Thanksgiving!

    My siblings aren’t speaking to me, and that’s all I can say about that. So, it’s us and Mom for the holiday. (Thanksgiving is my side, Christmas is Paul’s famiglia. Marital code 3471.2)

    Thinking about last year, another too-much-too-soon fatigue fest, I decided to stay closer to home and go full luxury.

    KOHLER. The American Club. Ooooooooooohhhhhh. Oooo la la. Or should I say “uh oh”?

    I should have known when we walked through a gaggle of investment bros in Patagonia vests in the lobby…what was I thinking? Ok, so it’s a bit stuffy and outdated, but it will be comfortable and relaxing…

    Our room’s power went out. And got fixed. And went out. And got fixed. And went out again. I have a powered medical device I need to use twice a day. This was not good. But no other rooms near the kids and Grandma were available until the next day.

    Our four spa appointments, tediously made three weeks before on an online platform as complicated as a tax form, were lost. I had meticulously planned for three pedicures at the same time, and then a facial for myself alone. Nothing, not in the system. And no openings at all.

    Ok, let’s try the pool. It was quite nice actually, and we LOVED the free shuttle van. I have to install a sauna in our basement now.

    We were a bit frazzled, and my side effects were in full revenge-mode, even after a nice swim. So, we were hoping for a special, delicious, wonderful Thanksgiving meal to save the holiday. I had made reservations for the Wisconsin Room Thanksgiving by recommendation of Kohler staff —we wanted to have a sit down meal where we could all chat comfortably, even with hearing loss (vs the Thanksgiving Grand Buffet option). It was something to look forward to. It’s The American Club, it’s fancy schmancy, it’s KOHLER. 

    The food was served in…pans? Like…pans. Not sizzling fajita pans (still the height of exciting and fancy in my 12 year old memory), not elegant oval au gratin pans, not a hot cast iron skillet (would have loved a Hot Brown), not even ramekins…pans. Like roasting pans. Think mini lasagnas. Also, actual lasagnas would have been great.

    IMG_9562

     

     

     

     

    The pans had high sides, making it impossible to properly cut the food. We hacked vertically at the filets, glancing around at other tables to see if we were missing something. Like plates. 

    The pans were cold so the steak was also cold. I have a dodgy right arm and Mom is 80, so the strange pans were even more awkward for us, but I can’t imagine anyone being able to satisfactorily slice their green beens in those silly things. 

    They served the boring side dishes family style, which was hilarious—-still no plates! The mashed potatoes, sprouts and stuffing had to go in the PANS. I’m a snob. At a white tablecloth restaurant, for a meal that outrageously expensive, I want my food on a plate.

    It’s KOHLER. They literally make PORCELAIN.

  • Depleted But Not Defeated

    IMG_7412

     

     

     

     

     

    Back in November, I developed Superior Vena Cava Syndrome, (SVCS) caused by the chemo port that was implanted only a few weeks prior. SVCS is deep vein thrombosis of the superior cava vein, the big fat juicy vein that drains from your head, neck, arms and upper chest into your heart. Basically blood clots in your neck and chest. My veins were blocked by clots courtesy of the implanted medical device.

    Symptoms started slow, then blew up over night (the night of my participation in the local art show). My chest, neck and face puffed up like a can of biscuits. My right arm and hand, stripped of a lymph drainage system, also swelled to Michelin Man proportions. My immune system, withering and weak, also suffered another infection. My neck felt strangled by the pressure. The phrase “blood clots” has a powerful terror.

    There is more to the story of that emergency room dash, hospital stay and recovery. At this moment, the angioplasty is in my mind. I had two angioplasty procedures to treat the blood clots. I went under a huge hanging X-ray machine, in a procedure room, with my arms out like a scarecrow, nurses and doctor all around me. I was wide awake. Wide awake when they wheeled me in, wide awake when they jabbed and stabbed for an IV, wide awake when they ran down the checklist and time out. Then, I was finally slightly sedated, but that takes time too. I was awake while they put drugs in the IV, an oxygen mask on my face and performed a dozen small tasks behind and around my head. 

    This was one of many procedures that was frightening, stressful, and cumulatively destroying my mental health.

    Just days after I was discharged, I took the family to Chicago for Thanksgiving. Made the arrangements, got the train tickets, hotel, restaurant reservations, museum tickets, everything. I still had a PICC line in my arm, for injecting antibiotics four times a day.

    I see this picture of us out at Thanksgiving dinner and I see a woman trying so hard to keep it together, to carry on as “normal”, to even inject some fun and adventure for our little troop.

    She’s tired. Tired of cancer treatment, tired of mistreatment, tired of the set backs. Tired of the selfish, petty family bullshit that left her on her own, unsupported, to “save” family Thanksgiving.

    She doesn’t know it yet, but after one more traumatic, disastrous hospitalization she’s going to make some big changes.

  • Cancer Is So Rude

    DSC03916

     

    I was heading to my new breast cancer center, navigating a hospital building shaped like a traffic circle to my first chemo in my new location, my new doctor, my new care team. An unfamiliar space, a familiar procedure. The elevator popped me out at the second floor; I turned to study the direction signs. A tall, loud white woman stood there, at the intersection of the cancer clinics, talking on her phone. Loudly. I can hear everything she’s saying, each sentence more troubling—

    “He doesn’t want to, he doesn’t want to come to the shelter, he wants to die. That’s what’s going to happen, he wants to die and well, let him DIE then.” And so on.

    I pass her quickly, roll my eyes, and walk down the long carpeted hallway (hoping I picked the correct hallway!). Then she does too.  Still talking, marching close behind me for about half my trek. I picked up my pace, annoyed we are both going the same way.

    I lose her before the waiting area. I can breathe again, literally. I slow my pace and focus on preparing my tense body for the upcoming infusion, hoping my veins will behave. Phone Talker had stopped in front of a window, leaning on the sill in a posture of ownership, her voice bouncing off the hard glass. More alarming words spit out, but she’s staying in one spot. In a few more hurried steps, I can’t hear her anymore. Relieved, I check in with the very friendly staff and settle in to a chair facing the sunny windows. Big breath.

    Then, Loud Lady enters, still on her phone. She leans on the reception counter, continuously talking to her phone while the staff check her in. 

    Then she turns back towards my bank of chairs, pacing back and forth, somehow talking even louder.

    “You should have seen it, BLOOD EVERYWHERE!”

    She passes in front of me, a cloud shadow over my head. I lean forward into her field of vision, gesture for her attention and say as gently as possible—-

    “Ma’am, you’re having a very disturbing conversation that we can hear!”

    She turns away from my eye contact, continues with her phone friend, her voice thick with disdain—“She said I’m having a DISTURBING conversation”. She rolls her eyes with her whole body. 

    She continues to move down the hallway, but instead of leaving, she loops back, then back and forth, pacing and talking in front of the twenty people waiting in scattered groups, all of them cancer patients. All of them, all of us, have to be there, have to wait, have to endure her. Because of the check in, I assume she has to have treatment too. This registers but I can’t locate any empathy. She may be one of us, but she’s the shark in our aquarium.

    Exasperated and annoyed to lose my comfy spot in the glassy sunshine, I move to a chair further away, behind a dark sheltering column. Finally I make some distance between myself, fragile and anxious, and the troubling intrusion of Loud Lady.

    Like all my cancer experiences, the problem follows me, invades every aspect of my life and hovers in my vision. Threatens to overpower me. All I can do is move out of the way.

     

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

    IMG_4064

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

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

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

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

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

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

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

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

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

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

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

    WHAT IS WITH THE GOLDFISH

     

     

     

  • Big T and little t

    DSC03242

    Trauma.

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

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

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

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

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

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

    It really messed up my life.

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

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

    What you did wasn’t right.

    I didn’t like killing people.

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

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

    You’re trained to kill.

    You’re trained to ignore pain.

    Ignore death.

    Ignore everything.

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

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

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

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

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

    I’ve got gas masks for my whole family.

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

    Just in case.

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

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

    I don’t tell anybody that.

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

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

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

    Why am I telling you this?

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

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

    Here’s a quote you should remember—

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

    I’m an old warrior fading away.

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

    It’s out of my reach.

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

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

    I brought my kids up right.

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

    I brought them up as caring, giving people.

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

    You can only do so much.”

     

     

  • The Heart’s Folly

    DSC01439

     

     

     

     

     

     

     

     

     

     

     

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

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

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

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

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

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

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

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

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

    Ah, romantic love.

     

     

     

     

  • These Things I Know

     

    IMG_1227

     

     

     

     

     

     

     

     

     

     

     

     

    These things I know about The Holidays:

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

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

    There will either be no snow or all the snow.

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

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

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

    Church will either be your shelter or your nemesis.

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

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

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

    The lights will be tangled.

    The batteries will be dead.

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

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

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

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

    …(warning, seasonal sappiness)…

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

    And maybe a little tipsy.

     

  • The Likes We Need

    IMG_1049

     

     

     

     

     

     

     

     

     

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

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

    Validation.

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

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

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

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