Last fall, Typepad, the blog service I used, shut down. I crossed my fingers and downloaded my 24 (twentyfuckingfour!) years of blog entries and moved it all to WordPress. So, here it is. Now, I just have to get back to actually writing!
girl at large
I like to write about life when you have a job, some kids, a fixer upper and a fatal disease.
about
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The kids left the screen door open. Something flew by my head on the porch. The streetlights came on, the corner bar clinked. Summer night in Shorewood.
I’m cozy in bed, pillowed in and hydrated, when I hear a commotion downstairs. Paul was dodging a bat that was flying in fast circles around the living room ceiling.
He didn’t get it that night, it swooped past the broom and disappeared into an unknown cranny in this old bungalow. We slept with the bedroom doors closed, looked up rabies, looked up pest control, shrugged and waited.
The next night, from my perch reading in bed, I saw a fuzzy black smudge fly, fast and low to the ground, down the hallway! Paulie leapt into naked action, armed with a random piece of pottery and a laundry basket. I ran, gingerly, downstairs for the broom. On my way back up, I scooped up Stevie who was sitting obliviously on the stairs.
Down the hall, I swing the dust pan at the black smudge flapping toward me, batting it back to Paulie. He managed to swat it, dazing it severely, and scoop it with one swift gesture into the garbage can.
Panting, as he slide by me with the captured critter, “Oh good, you’ve got Stevie safe”.
Safe? Yes, THAT’S what I was doing, keeping Stevie safe! Yep, got the cat right here, tucked safe and sound away from the bat, under my arm…
Who’s going to tell him?
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Thyroid: Let’s be really, really cold on a sunny day.
Hysterectomy and estrogen suppressants: Oooh let’s do a random hot flash right now!
Liver disease: No mimosas for you!
Lymphedema: If I swell just right she’ll never get out of this fancy shirt.
Chemo stomach: Let’s have raging indigestion and nausea at the same time, at the favorite restaurant.
Bladder: Let’s behave like she just had those babies yesterday.
Someone insulted my body a few weeks ago. This body? You’re telling me I need to change this body? This amazing, sturdy, resilient, cancer-treatment-surviving body? No way, I love this beat up ol’ thing. It’s been having a rough time recently, but eight and twelve years back just look at what it made. ❤️
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La Posada Resort, Santa Fe, New Mexico.It’s wonderful to be traveling again! Our First Borns road trip days are behind us—long 8,9 hour driving days, multiple states and lots of stops are in our proverbial rear view mirror. But adventures by plane! That we can do. Between the three of us we have one good set of ears, one good set of eyes, and five functioning knees. So, far, that’s all we’ve needed in sunny Sante Fe.
I’ve had to cancel planned trips to Santa Fe twice! We cancelled our annual spring break trip altogether two years in a row —in March 2023 Mom was just moving back to Milwaukee and in 2024 I was sick. It’s hard to think about those opportunities lost; as Mom ages and Felix grows up and I decline…there are only so many years left for adventures with my bookends. Only so many days left for artsy cafes, spring sunshine and laughs like these.
Mom and Felix on sharing a bed:
Mom: ”How many beds are there in our room?”
Me: “There are two queen beds and only one person who’s paying for them”. (I really wanted to say “and there’s only one Queen” but I knew Mom would take that title).
Mom, describing that Felix has gotten so much bigger and moves around a lot, “Ok Felix, I know what we can do, we can put a pillow between us, build a little pillow wall.”
Felix: “Pillows don’t protect me from farts Grandma”.
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Hi there Wisconsin State Politician,
I'm writing in SUPPORT of the bill to regulate pharmacy benefit management companies and require them to pay independent pharmacies at the same rate as others, and to give patients the right to choose their pharmacy without penalty or significant cost difference.
I’m so glad I caught news of this bill on WPR!
I’m living this problem in real time. I have Stage 4 Metastatic Breast Cancer; my medical condition is complicated and complex. I take about 20 pills each day. My local pharmacist, found after a long and frustrating year of switching pharmacies because of mistakes, bad service, lack of communication (Walgreens, MetroMart, CVS, etc) was the answer. My local independent pharmacy and their staff pharmacist have been an integral PART OF MY TREATMENT PLAN.
In January, I was informed by my insurance (Blue Cross Blue Shield) that ExpressScripts, who manages my prescriptions (apparently? News to me!) requires me to have 3-month supply prescriptions for three of my prescriptions. And to continue paying my reasonable co-pays, those prescriptions can ONLY be filled by ExpressScripts partners, which gave me only two choices, neither of which are my current pharmacy. One of the choices near me (Walgreens) has MADE ERRORS with my medication and I refuse to use them. The other was mail order which means I’d have no relationship with a pharmacist and my current pharmacist handling all other medications may be in the dark.
There’s a long story of phone calls, back and forth, mistakes, delayed medication, paying exorbitant amounts for carry-over pills while waiting for mail order pills to finally get approved and shipped, paying more overall for copays by comparison, etc. There were tears. There are still tears.
Being able to select my pharmacy and pharmacist is critical to having control over the quality of my medical care. The first thing Cancer does is take control; my health insurance shouldn’t also take control of access to my medication and my choice of best providers.
Thank you for taking note of my message, and for the work you and your team do!
Sincerely,
Kate Mikkelsen
Shorewood, Wisconsin -
Ativan + The Bear Hug ⭐️⭐️⭐️⭐️⭐️
My new cancer center at Froedtert has me seeing every possible specialist they have, and they have them all! Next week is the liver clinic, but this week was all about veins.
I had another venogram and angioplasty today in the day hospital. It went well, no complications. I’m home resting.The subclavical vein on the right was very scarred and nearly closed again, but the balloons worked and opened it up enough. The left side vein is totally blocked, nothing can be done there. My body is make new collateral veins to compensate, but it’s still more blood to move than I have pathways to move it. Add the lymphedema, (though it’s much better too) and I’m an enormous puffer fish. With a defective fin.My right arm is swells up and down unpredictably, I’m losing hand grip and my shoulder range of motion is limited. Though that might not last long with my new physical therapist! I jokingly asked if she grew up on a farm and I was not disappointed. Girl is going to get my arm rotating as fast as she can shoe a horse or do any other farm thing requiring large hands and brute force. My lymphatic physical therapist, though a gentler touch, is another wonder worker, and of course, being Italian from Milwaukee, is probably Paulie’s cousin. Physical therapy three times a week, arm compression pump an hour every day, a range of humiliating exercises involving rubber straps, foam noodles and ice packs. I do all the things. And still, the swelling, the skin turning purple, the pain continues. So, that’s why I was a guest of Interventional Radiology again today.I was awake for the procedure this time, I’m not sure why they couldn’t do the full sedation like the last one back in July. It was uncomfortable to see the room, the lights, the machines, all the people. Feeling all the things being done—monitor stickers, oxygen nose thingies, IVs, shaving (!)…I try to imagine pit lane but it’s more like Thanksgiving when the disposal clogs. A lot of very busy people in a small room but really only one does the dirty work.
Wait, am I the pipes in this scenerio? ((Shakes head to clear mind)).The plan is to have this procedure every four months or so; my Doctor says I’ll need to “come in for regular tune ups”. I wish I had better understood the complications and risks of radiation. I would have still done the treatment, but I would have preferred being more prepared, more aware of all the things that can happen, the other structures that can get damaged (thyroid, woody fibrosis, dry eye, lymphadema). Is the medical system ready for the number of longer term cancer survivors they’re creating? I don’t think so, not yet.Am I ready to see improvement in my wrestler-neck and big round moon face? Yes! Please let this work. It might be vain, but I don’t look like myself, I don’t recognize my face. AND NEITHER DOES MY PHONE! 🤦🏻♀️ -
I’m listening to Heather Cox Richardson’s politics chat; she’s explaining that she doesn’t like to use the passive tense. The passive tense has no actor, the passive voice is vague, it’s not clear who is doing what. She takes this thought from school writing class to current day politics; she is my #1 choice for the proverbial perfect dinner guest.
Passive Tense. A perfect description of my current state. Passively scrolling, physically and emotionally tense. Blankly following routines, carrying tension like an accessory.
I’ve been in my own head for weeks, ruminating on painful memories, scrolling for hours. Focusing on one pain rather than all the others. None of which I can control.
I can’t control the government, I can’t control the effects the executive orders will have on our healthcare for Felix. I can’t control my job; I can’t control the market that affects my sales. I can’t control my cancer; I can’t do a damn thing except wait for it to spread. I can’t control my chemo; I passively accept the sickness in exchange for the (fingers crossed) benefit.
I can’t control my arm—it swells and shrinks randomly, without reason, and without regard to my regime of exercise, physical therapy, and compression pumping. My entire chest twitches and contracts with the strain of a work day, typing, standing, driving, reaching. The tension in the fibers, skin, thin muscles ratchets tighter and tighter until bedtime. Pain settles in with me each night. Like everything else, it’s out of my control.
Rather than settle on any of the above issues, my mind returns like a gerbil wheel, to the last messages my estranged siblings sent to me. Over and over I analyze, reread, rethink, re-argue. It’s hurtful, almost physically, deeply and relentlessly. The scab picking cliche applies. I don’t know why I continue to ruminate on a hopeless situation for months and months, but I’m sure my therapist is tired of hearing about it.
Is this grief?
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Our gender clinic has “paused” taking new patients. Appointments and therapies have been cancelled. My son’s next appointment is “safe” for now, but only because he’s already on the medicine. If this had happened just nine months ago, we wouldn’t be able to get it at Children’s. We would be scrambling to find options. Like other families are scrambling right now. Like families in 25 other states have been doing for years. And no one knows if things will change again—will the clinic close completely?
I really didn’t think Children’s Hospital of Wisconsin would cave, but the wording of the trans-hate executive order is such that they could lose ALL their federal funding, not just federal funding for the gender clinic.
What the republicans said they would do, they have done. How could you know my family and still vote for him?
I don’t get it.
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I thought I could handle it. I thought—we are privileged, our support circle is strong, we have medical contingency options. Just put our heads down and shoulder on for four years in our blue bubble and we will be ok. And we will be. (Lots of folks won’t be ok and aren’t ok and I think of that every day and every day I try to learn, advocate and act in ways to help/support/ally.)
But today I am not ok. Read this shit. Read it. It’s the effing official White House website. This is the leadership, what should be the moral symbol of our fledgling country. Read it and try not to cry. I couldn’t.
Where are their hearts? Where is the science? What happened to truth? No one is mutilating their child, we are loving them.
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2025, What Do I Want From You?
Revenge
To be right
Validation
Information
The truth.
Clarity
Unconfusion
To be a little less alone.
To be seen.
To be undead.
To be valued.
To understand.
To help.
To be witness.
To be witnessed.
To grow.
To have fun.
To enjoy the now.
To be free of intense regret.
To share in safety.
To feel secure.
To feel solid ground during tough times.
To feel solid ground during tough conversations.
To be courageous.
To be the recipient of courage.
Healing Conversations.
Kindness
Compassion
Empathy
Help
Communication
Connection
Response
To have trust in a response.
Trust
Hope
Acknowledgement
Space for grief.
To be companioned in grief.
For my grief to be real.
To be worthy of my feelings.
To allow myself to be as sick as I am.
To stop the voice that tells me I don’t deserve to have more sympathy or compassion or consideration.
To stop the voice that tells me I’m not really as sick as I act.
To stop the voice that tells me that what I wish for is too much to ask of anyone.
To stop the voice that tells me I’m being melodramatic.
To stop feeling like I’m overreacting.
To stop needing attention.
To be successful in getting attention.
To stop having hope.
And yet to not give up hope.
To stop wasting time.
To continue to believe that they are better people than they seem right now.
To have hope that this can be better.
To continue to believe that they are capable.
To be seen as the adult that I am.
To know them as the adults that they are, without an outdated script.
A new chapter.
To write a new a now, a new future, to build.
To create.
Before it’s too late.
Omg I had to end in a dumb-ass rhyme.How cliche.
How trite.
How absolutely accurate.
girl at large 
