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... Continue reading

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. Continue reading

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... Continue reading

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... Continue reading

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... Continue reading

“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... Continue reading

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... Continue reading

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. Continue reading

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. Continue reading

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. Continue reading

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?... Continue reading

This is the first three week cycle where I didn’t get the cytotoxic chemo drug in my infusion. I had no idea. I don’t think I really grasped how sick I was even on my “good days”. There was a predictable rhythm the fourth, fifth and sixth cycles—I was “fine” for three days after infusion (thanks to steroids which had their own awful side effects but made me feel false energy), then sick for ten days and then “ok” for seven days before the next round. I was not fine. I was not ok. Today is the first day I... Continue reading

This is the time of year we usually plan our spring break road trip. Me, Mom, Viv and my copy of Historic Hotels of American hitting the road. Last year, we canceled at the last minute as COVID was closing in and states were closing down. This year I hoped to do a localized version, perhaps a trip along the Mississippi River in western Wisconsin. But I hadn’t booked anything yet, because you know...cancer. After five months of chemo, this week was scan week. Monday was my PET scan, Tuesday we got the results. As my oncologist said, in his... Continue reading

Thank you Internet, today was a good day. We managed three big wins you and me together: I successfully won a medical billing dispute. We completed the registry for Viv’s two week summer camp. And best of all, Mom got her vaccine! It’s been a very good day. I’m going to bed now to savor the relief. Continue reading

The monochromatic outfits we all loved have to be inspired by The Crown, don’t make fun of the Queen ever again. Men need better dress up clothes. Get some interesting coats dudes. Bernie is in front of me at the post office every time. Every event needs a mascot. I didn’t know it was Gaga because I had on only audio at that moment, I thought it sounded weird. I am clearly not musical. The whole of my creative life will not add up to one tenth the impact of one line of Amanda Gorman’s poem. I was on the... Continue reading

I can’t tell you how much it means to see these two together. It’s been a hard hard year, this kiddo needed this buddy so bad. It’s a daily joy to watch Viv be responsible and empathetic, learning how to take care of a living thing. My favorite moments are when he’s worried that Stevie isn’t warm and comfortable at all times. Viv’s favorite hoodie is frequently found gently placed on Stevies snoozing back. For my reflective and reserved child, who misses classmates and playgrounds, running errands and seeing grandparents, this little friend has woken something up that has been... Continue reading

The timing of the fourth round of chemo, just a few days before Christmas, sucked. I was the sickest during the height of home bound festivities. Chemo day itself is not hard. After chemo is hard. Like the unexpected (and rarely talked about) challenges after childbirth, the after affects of chemo are less known, wildly varied, and involve a lot of fluids. I’d been overdoing it for the holiday for weeks; keeping busy keeps my mind off the illness. Making good things happen for the kids keeps the darker thoughts at bay. Sometimes, in the early morning when I was... Continue reading

Me: “Charlie, how many cookies have you eaten?” Charlie, gesturing adorably to the nearly empty tray: “I’ve eaten all the ones that are missing” Continue reading

Tomorrow is chemo round three and I’m sleepless on steroids and dreading it so here is a picture of how my husband arranges the kids’ treasures after a pandemic Autumn walk. At least when he leaves a mess on my desk he does it correctly. Continue reading

The thing about chemo nurses is they will cheerily ask “So, what did you do this weekend?!” like you didn’t spend it: having diarrhea being constipated feeling nauseous feeling dizzy taking nausea medication that makes you dizzy counting hives having bloody noses counting pills, writing it down and then immediatly forgetting what you've taken being cold, then hot, then cold gargling with baking soda and salt gargling with apple cider vinegar having bone pain sleeping not sleeping while everyone else is sleeping moisturizing your bald ass head Continue reading

(This is my favorite photo of exhaustion.) I’m in the infusion room right now and all the nurses are talking about the next phase decisions coming down from their organization leadership. So far I’ve overheard chat about—-surgery and electives are going to be stopping, procedures that might have been overnight admissions are now only proceeding if the patient can tolerate same day outpatient, they started another tier of hazard pay at +$30/hour, “But what difference does that make if you get quarantined and yeah you made all that extra money but you get back to regular when you’re off and... Continue reading

Halloween 2020 is testing the creative powers of parents across the country. Tonight I’m thinking about my greatest parenting triumph when at seven o’clock on a work night we made a Batman costume from household items (including a tarp, duct tape, construction paper and shoelaces) in ten minutes so Viv could go to the elementary school monster mash party at the very last minute and then promptly take it all off to jump around in a cafeteria with a throng of sweaty seven year olds. We did not take a single fucking picture. So, here is photo of Viv the... Continue reading

So the best fix for mouth sores from chemo and the pain of thrush, also caused by chemo, is a prescription mixture called Magic Mouthwash. It wasn’t provided in advance, or even mentioned by my chemo nurses. Typically around 50% of chemo patients experience canker sores, mouth sores, mouth pain and/or a thrush infection. Many experience a change in taste so extreme that even water tastes bad. Water. This is me. After some back and forth with the nurse line and doctor, we finally got the prescription called in for Magic Mouthwash today. But it’s not covered by my insurance.... Continue reading

I have breast cancer. It’s an aggressive type, fueled by my own hormones, and like a constellation it has traveled in a great arc from my breast to my sternum, out to my arm and up past my clavicle. I won’t go in to the story of how I was diagnosed, why it wasn’t caught “earlier”, or the howling anguish of the last thirty days. Not yet. Today I’m ready only to say that things look bleak but also better than they did a week ago. It’s all horrible but also I’m very lucky. I feel like shit but I’m... Continue reading

I’m trying to convince Paul to be on time for this morning’s grocery store pick up appointment by just going in his pajamas. He won’t do it. “Paulie, have you seen how people dress here?! Even in your pajamas you have more buttons on right now than the average Wisconsin man at a wedding!” Happy Birthday my love. Next year will be better. Le Mans is waiting for you. So are the groceries. There’s booze in that order, get going. Continue reading