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... Continue reading

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... Continue reading

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,... Continue reading

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... Continue reading

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... Continue reading

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... Continue reading

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... Continue reading

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... Continue reading

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.... Continue reading

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... Continue reading

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... Continue reading

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.... Continue reading

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... Continue reading

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... Continue reading

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... Continue reading

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... Continue reading

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... Continue reading

I’ve been working with a therapist for the past year to deal with the fear, grief and upheaval of metastatic cancer life. Dealing with cancer now brings up a lot of stuff from back then. All your old messed up shit comes rising up to the surface when you think about your mortality. So we talk about now, and we talk about back then, and we talk about how they connect. And how to free myself from some of the old shit, so I can face this new shit. Oh the irony! Figuring yourself out just in time to die.... Continue reading

Madeline Island was so beautiful. My paintings, however, were not. It was a glorious week all to myself, surrounded by magnificent views of prairie, woodlands, lagoons, bluffs, and mighty Lake Superior. The instructor was also superior, ahem, Mr. Superior. And that’s all I’ll say about that. So, the instruction wasn’t a good fit for me, but the classmates, food and painting locations were perfection. Though I didn’t produce any work to brag about, I did rekindle some dormant skills— Painting from life Value studies Bullshit detecting I’m beginning to really enjoy this Watercolor-Menapause-Yoga Pant-No BS phase of life. Continue reading

Today was a Bed Day. For every three to four Doing Stuff days, I have one Bed Day. I’m working hard to suppress the bad feeling about staying in bed all day (thanks a lot capitalism, Lutheranism and midwestern mythology). I’m working on accepting my “new normal”. The best part about the new normal is Mama’s Bed Time. It’s my favorite time of day. Tonight, I had them both laughing and squealing at cat videos I had saved for them. They LOST THIER SHIT. I haven’t heard them laugh like that in months. So, now I’ll be staying up all... Continue reading

Me: “Therapy was tough this week. She suggested I’m holding on to this grudge because it’s easier and less painful than facing my mortality.” Mom (aged 79): “Well, I’m having to come to terms with it too.” Me: “What is that like for you?” Mom: “Losing you is going to be hard.” Me: “Wait, who are we talking about? YOU or ME?! Do you think you're going to outlive me?!” Mom: “Oops” Continue reading

When I got home from the hospital, the first thing I did was take a long shower and do all the things—shampoo, fancy body wash, every lotion I own. The kids, who didn’t know I was out of the hospital, came home about an hour later and ran right up the steps to jump on me in bed. “Mama’s home!!” “How did you know I was here?” ”We could smell you!” Continue reading

Cancer blew up my life, sepsis has blown up our summer. We’ve had to cancel two of our little summer adventure trips, reschedule our beloved Shaker Village trip, and I missed my painting retreat on Madeline Island. The Madeline Island art school was kind enough to let me roll over about half the cost to another session, so I’m going at the end of the month. But it’s not the same teacher or focus. It’s a bummer. The summer weekend trips have given me so much escape…I would guess most people can see the “bucket list” drive I’ve had for... Continue reading

My arms and hands are bruised from the many many blood draws and IV sticks. My veins became unruly by day two, my skin blooming with purple and green blackberry splotches after every failed attempt. There was never more than three hours of uninterrupted sleep. The second day, my plantar fasciitis erupted out of no where—-excruciating pain when I put any weight on my heels. Hobbling to the bathroom with an IV pole, a failing bladder and useless feet made a few nights almost unbearable. I had sepsis. Staph entered my blood stream most likely through my port; it’s not... Continue reading

It’s been almost a week since we returned from our epic Nebraska road trip, but I’m not yet feeling back at home. We returned Tuesday evening and went right back to work and school, and for me, Chemo on Thursday. I’m having a hard time with this treatment, physically and emotionally. Steeling myself for bad side effects when the initial chemo had an end date was easier. This chemo has no end date, except when it fails me and the cancer spreads, which, hopefully, isn’t for a long time, as in years. So, we HOPE for YEARS of this… Here,... Continue reading