girl at large

The Path

As school starts and summer ends, the weather shifts, and annual transitions begin again, I’m experiencing intense emotions about my diagnosis and treatment. 

Previously, I didn’t understand the anniversary trauma that others felt about deaths, divorce or other losses. It confused me—surely you feel grief at any and all times of year? Why is an arbitrary date on a wall calendar more upsetting than any other day?

Now, I get it. For me, it’s not the specific date but the repeat of the markers of time. The return of the same season. The repeating events like back to school, getting mums, putting up the storm windows. Those things you do now that you did then too, or at least until your world stopped.

Cancer owns your schedule. The first thing it does is stop time. Then it overtakes all your plans, current and distant.

I’ve mentioned invisibility before, it is here again. I feel physically better than I have in months, I have been able to enjoy many more activities and look more like “myself” now.  My skin isn’t so grey and my hair is back, though ironically it is more grey. I am visually much “better”. 

This pain now is inside, invisible, and it is intense. I’m reliving the diagnosis, the walk down the hall to ultrasound, the devastation of hearing stage IV, the excruciating wait for bone scan results.

I will never “graduate”, I will never get a clean bill of health, I will never “beat it”. While the path after diagnosis was relatively clear—a treatment plan is a plan after all; the road ahead of me now is unknown, and I’m really scared.

 

The Subtypes

The Mozzerella  (a solid packed in water)

 

The Club Sandwich (layers of constipation and diarrhea)

The Scooter (sometimes also called the Squeezer)

 

The Pressure Washer

 

The Hot Pressure Washer

 

The Fluffy 

 

The Green Monster. (You ate nothing green, you drank nothing green, it’s just green for no reason)

 

The Sequel (I didn’t like the first one)

 

The Last Train (one more time before bed)

 

I know it so well and yet I still can’t spell it.. diareea, diharehea, diereha…diarrhea!

 

Strange Things About Breast Cancer

People, including friends and family, will become afraid of you. Afraid of the mortality you represent, afraid of what to say, afraid to acknowledge your tragedy.

 

Other people, sometimes surprising ones, will step forward into the uncomfortable space and be there for you.

 

Paper gowns fit no one.

 

There’s a secret code for getting a complaint, especially a pain one, taken seriously. You must say it at least twice. So rather than wait a week in between appointments, complain loudly and repeatedly at the first opportunity.

 

People take the easiest path. If I had been able to schedule my mammogram screening right in my obgyns office rather than have to visit a website that wasn’t working and then call a separate location that put me on hold for twenty minutes after which I gave up and forgot about it for a year…well, I might have caught it “earlier” and suffered slightly less. Like programs that automatically enroll folks in a 401k, with an opt out method rather than opt in, it should be designed for the imperfect human users that we are. It would save more lives if providers directly scheduled important routine screenings while you are still in your doctors office, still in that ill fitting gown.

 

The radiation machine looks like an enormous kitchen aid mixer.

 

Chemo and other breast cancer treatments can affect even your eyesight! Generally, the treatments will leave lasting changes to your body. Even those that “beat it” will live the rest of their days with painful side effects, medication reactions and surgery limitations. Our grief for the body we last had on the ultrasound table is deep and lasting.

 

I’m not claustrophobic, I just don’t like CT, MRI and PET tubes. If it was a spa bed, a tanning bed, even a middle row airplane seat, I’m ok. Scan tubes make random horrible noises, slide you in and out and sometimes oddly up without warning, like you're a hot dog on a malfunctioning 7-11 machine.

 

Straws are your friend, I underestimated them.

 

Staging is misunderstood. It’s not only about time, size or spread. It’s mostly about biology—the type of cancer cells. Take that + cell grade + cell growth speed + cell hormone receptor status + location + size + spread and then you get the stage. But stage is not the same as expected outcome. It is only helpful in planning the treatment, and even then, it’s the biology that’s informs most of that. It’s main purpose is in tracking statistics for hundreds of thousands of patients over decades. Stage is your Breast Cancer ID, it is not you, it is not your prognosis. It’s not even a complete view of your disease. *Except stage IV. 

 

*Stage IV is the redheaded step child, the thinnest last chapter of every breast cancer book, the island on which I found myself. Because stage IV breast cancer diagnosis is so closely associated with time (vs biology and location), it’s loaded with guilt and shame. The emphasis on “early detection” over the last two decades has been lifesaving, but also detrimental. Detection is detection, and disease should be detected as soon as it’s possible, and sometimes it’s just not possible before it’s location or size is beyond the region of the breast. And that can happen between mammograms, that can happen, with some kinds of tumor biology, in just months. And without a single symptom. Which brings me to…

 

Lumps. Yeah, most breast cancer patients never felt one. Most obgyns didn’t feel them. Mine didn’t. I had four tumors, never felt a single one, even after I had an MRI SHOWING ME EXACTLY where they were. They were only 2cm, and deep in my tissue. Self exams are being phased out by the worlds top two breast cancer authorities. Relying on self exams should not be a thing. Self awareness,however, that is a thing. If you notice a change in skin texture, size, nipple shape or pulling in/staying erect, or of course a lump, go in to your doctor for a screening. 

 

You get stupid rewards like bell ringing and certificates because they can’t give you a clean bill of health. That’s not a thing for most breast cancers. Even the acronym is depressing…NED, No Evidence of Disease. Not No Disease, they best they can say is no proof of it. Which also means no proof that it’s not there.

 

Surgical drains are strange! They are REVERSE IRRIGATION TUBES INSIDE YOUR BODY. Shudder.

 

White breast cancer is different than Black breast cancer. Screening rates, detection rates, survival rates, and treatment outcomes are all significantly lower in the Black population. That has to change. I don’t know how to help that happen, but I’m learning how to pay attention to it. Asking the question “How are you addressing the disparity?” of every organization I’m working with or touched by in this process is a place to start. 

 

Staying Flat, (not having breast mound reconstruction) is not a de facto option provided at all mastectomy consultations. Most patients have to ask for it, and many still face a horrible disfiguring assault on their body called Flat Denial, where the breast and/or plastic surgeon leaves large flaps of empty skin behind during surgery “in case you change your mind”. This happens even when patients clearly request Flat without reconstruction. Flat is a very valid, and very healthy (fewer surgeries, no foreign objects, no risk of infection or complications) choice. Advocates are working hard to educate both patients and providers, but it shouldn’t be so hard. 

Diarrhea comes in so many many forms. Who knew?

 

All the providers assume I’ll want falsies. Nope. Flat is good. They even say things like  “but insurance covers them!”. Um, ok, but thats still not a good enough deal.

 

The “at least” trap is inescapable. I hate it when people say it to me. “At least you caught it now”, “at least you have support”, etc. I hate it. And yet, I caught myself saying it just the other day. I think it is a natural human instinct to find the thing that can make something survivable, to grasp for that buoy. Perhaps our language around it is lacking. I will have more grace next time.

 

Where are my nipples? Like, what do they do with them? 

 

Summer of Confidence

We went to the pool today. I had enough energy to do two things, which is a lot. Charlie, who is afraid of the shower, spent an hour directly under the spray nozzles getting drenched.

Felix showed off his head dunking, bubble blowing and dog paddling. The bike riding continues to be a success, and he now has permission to ride down the block alone. I rarely worry about my oldest; he’s cautious, thoughtful and always observant:

“Why do they call it a milk shake? It’s already made, it should be a milk shook.”

Little Wins

Last spring, as we settled into a work-from-home, school-from-home, freak out-from-home routine, I often felt helpless. Helpless to stop the pandemic, helpless to keep my job afloat, helpless to keep my parents and in-laws safe…I knew how to hunker down; the 24 hour domestic family maintenance wasn’t hard. It was a lot like maternity leave, which still felt recent.

But the unknown. The uncertainty. The lack of answers for the kids. I didn’t know what to do. One evening early on, I gave the kids donuts in bed because I thought we might all die and that would be a nice final treat. I wanted to comfort them like that scene in Titanic when a mom tucks her two littles into bed. Dramatic I know, but in the early days we didn’t know how it spread, didn’t know how deadly it was, didn’t know anything except that someone I worked with died in his bed after feeling ill just a few days.  Anything was possible, including the worst. And for many many many, the worst is exactly what happened. 

Most mornings, we walked the kids over to Mom’s. Felix tried his scooter. He fell. He walked it some days. Other days he scooted a bit. And then, one dappled day, he was gliding down the block.

I cried. It was the most beautiful thing I had seen in a very long, anxious time. He was free, like a scene in The Ice Storm when the girl glides her bike down the hill, unaware her mother is watching with awe and envy.

Today, more than a year later, we are safer and yet still unsure. The unknowns are more unknown.  Sandwiched between the start of the pandemic and whatever phase this is now, was also cancer and loss. Every day has been a singular challenge.

And also today, out at the playground, Felix tried his bicycle. He rode in a sweeping arc, smooth and free. It’s most gorgeous video I have ever seen.

A bit dramatic, I know, but Mama never learned. And I’m so damn proud. 

You Are Not Entitled To My Life

“I’ll need you to be masked”

“That’s ok you can wear a mask”

“I know, but I also need you to wear a mask”

“You need ME to wear a mask?”

”Yes”.

”We can talk about that back in my office”

“I’m not meeting with anyone who's not masked, just like my email explained. I’m immune compromised, I’m a cancer patient”.

“I’m a cancer survivor too. And I’ve already had it”

“I’m in active treatment. Please wear a mask”

”It’s a pain”

”It’s my life”

“Fine”. Asks receptionist for a mask.

“The mask they gave me sucks, I’ll have to go to my car to get a better one.”

“Ok, I’ll wait right here for you.”

“Sorry but I despise masks”

 

Thanks for valuing my life less than your mild discomfort.

When You’re Feeling Low, You Always Can Count on Pat

I was showing Mom today how my range of motion has been affected by radiation. Lifted my left arm well over my head, stretched it to touch my right ear, all good. Lifted my crooked right arm and it barely went above my shoulder…

Mom: “You have to do something about that!”

Yes, thanks mom.

 

Some other recent Pat moments include:

“You look less, you know, cancery.” As my hair was growing in.

“Well it sounds like you have a ways to go”. When I was lamenting that I just wanted chemo to be over.

“I’m not saying I’m making it up, but in my head…” I laughed so hard I forgot what this was actually about.

“You look fine”. As I adjust to dressing flat, bought an entire new wardrobe and invested heavily in Sephora. Fine? Fine? 

Oh Pat.

Little Consolation

This is Nibbles. He was lost yesterday, sometime between daycare and Nonna’s house, somewhere between backpacks and car seats and playrooms.

I found him late at night, just in time to take bedtime from tears to tucks. 

And that’s about the only thing I managed to feel good about this week. I’m feeling defeated. I’m in the last long stretch of active treatment, or so we presume, until the next scan reveals my future, if I have one. The chemolite™️ side effects are accumulating, making my energy sputter out by 2pm, and introducing a new hell of intense joint and muscle pain. Work is no longer the reliable escape it once was; as people leave for better jobs and the economy has fits and starts, it feels too precarious. And Covid is roaring back, making the recent brief joys once again scary and risky for me with my damaged immune system, and of course my kids are still vulnerable. 

Most distressing, Paul’s Dad, Rocky, my children’s stalwart grandfather, died two weeks ago after suffering a year of congestive heart failure. I will write a tribute to Rocky another day, and it may be private. It’s not entirely my place. But I do want to share that we are grieving, and I’m struggling to help my kids understand.

Sometimes it’s all overwhelming, and I just can’t do much more than scroll, or sleep, or cry. 

Some nights, you are just inconsolable until Nibbles is back where he belongs.

Rebound

I was out at a customer visit this week, the first time in a long time. It’s still awkward, I’m rusty at my in person communication, especially with new clients. Of course some new clients are also rusty with their manners, but that’s another story.

But my selling muscles will return, and now that demand is finally coming back too, the timing of my physical healing couldn’t be better. I am so grateful for that timing. Feeing physically better as the weather warmed up and being able to work as the office world wakes up has been a gift.

Me and Milwaukee are on the rebound. Also, there’s some sort of sports thing going on.

Happy and Lucky

Felix is a name that stems from Latin meaning "happy" or "lucky".

It is also the name my oldest son has chosen for himself. 

We are so happy and lucky to be supported and surrounded by love; and to be the parents of the most stoic and hilarious straight-man kid you’ve ever met.

Clear Air

I snapped today. One of my cancer care team said “warrior” one too many times and I finally let them have it. As much as my squeaky, raw radiation laryngitis voice will let me anyway.

I hate warrior/hero/battle culture. I am not any different than any other cancer patient. It’s all suffering. We all suffer. When someone just as “strong” as me dies, what does that say for the strength of their fight? The depth of their will? Nothing. Because it’s not a fair fight. Warriors choose to go to battle, heros are heroic because they choose to go in to danger when others shirk. No one chooses cancer.

Give me the space to be weak. Just because I’m not crying in your office doesn’t mean I don’t cry in my car. Telling me Im strong because I’m “doing it all” while I’m in treatment? Ugh, it’s not strength, it’s reality. I still work because I have bills to pay. I still take care of my kids because they live in my damn house (LOL).

Cancer don’t care. My doctor should.

The Growth That Doesn’t Kill You

Now that we can be social again, I get a lot of questions about my cancer. Some are kind, some are strange, most are simple enough—the basic how are you doing/feeling/coping. Once in awhile a query is profound. A very dear friend, with a talent for getting to the heart of the matter, especially when it’s your heart itself, asked “Has this experience changed how you relate with your father?”

pow. In fact, it did. 

My drive to treatment is about twenty minutes each way, thirty when I take the prettiest lake route. I enjoy it, and with the spare time I make speaker phone calls.

Me: “Hey, Siri, call Dad”

Siri: ”Sorry, you don’t have a Dad”

Bwaaaaahaaa.... so, this experience has changed Robert to Dad in my phone and in my life.

 

p.s. did I mention the friend is also my hair dresser? Skip the therapist, get your hair done.

 

Happy Happy Happy

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 chatter. When you are excited, you get so animated that you literally pat your own legs with a little drum roll, as if your body cannot contain the feeling and it must be released. Charlie, you are the happiest being I have ever known. 

And, as my mother says to me each year, I’m so glad I had you.

 

Burned

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.

Holding On To The Feeling

 

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 butter and fan the apples out fancy just like the restaurant!” the kids say...

 

ps. Also, Charlie is back to being mostly naked.

Yes Really

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 week four? But no fever?”

 

TEST RESULTS COME BACK

Nurse navigator: “You have an infection and also your red blood count is way down! Are you sure you didn’t have a fever?”

Radiation Oncologist: “No wonder, well we can’t do any radiation until you are well, you have this infection! And did you know your blood count is so low?”

Surgeon: “Oh, you totally have an infection, that’s probably causing all the pain”

Oncologist: “Your very low red blood cell counts would indicate fatigue, are you fatigued?”

Chemo Nurse: “Girl I just saw your numbers, you are so sick! Let’s get these meds in you and get you out of here”

 

Waiting Is The Hardest Part

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 the end of the day I’m curled up like a roll-poly bug. The swelling moves across my chest and sides and back again like gelatin. Where there is swelling, there is usually pain. I’m now able to rise out of bed from a completely flat position by myself, which is an improvement. For the first two weeks I had to be propped on a wedge with additional pillows wedged in on each side. Paulie compared it to packing in a driver for the race.

Three things I have learned during this process:

1) There is no standard of care post-mastectomy. All my online support groups are clattering with conversations about my doctor said this, that doctor said that. Even from my own cancer team, I got conflicting advice for post operative self care.

2) Infinitely more money, time, and research has gone into building fake breasts than healing chests. Just put like 1% of that please to post surgery healing and flat closure techniques pretty please, a pittance.

3) Dressing with a flat chest and finding clothes that will flatter me is not a problem. I repeat, NOT A PROBLEM. To all the dear Facebook ladies who worry that they won’t find tops that look good after their mastectomy, ahem, I see you wearing nothing but sports team sweatshirts before too.

 

In The Trees

“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 who have had cancer and those who haven’t, that compared to chemo, surgery would be easy. “Compared to everything you’ve been through...” they said. “Piece of cake” someone said.

Nope.

 

I think this has been harder for me than chemo. Not in the way most people assume, I don’t feel that much sorrow over losing my breasts. It’s the loss of mobility, of strength, of thoughtlessly living in my body that I grieve.

 

It’s awful. 

I’m hunched forward, the skin and muscles tightened like an arthritic hand. Lightening strikes of nerve pain shoot across my chest and sides. Each movement is a pull on a slot machine of sensations. Not all are pain, but none are pleasant. Fatigue is my new base line, I have maybe three good hours a day. I can’t lift my kids, I can’t pick up anything off the ground. In a house with young children and their debris, in a life usually spent doing and making, cooking, cleaning, working, gardening, creating....this is debilitating.

I’m hopeful that physical therapy will help, and my chiropractor, and time. But holding space for all I have lost, and rejecting toxic positivity cancer culture, is important to me now. I will never be the same, and I’m sad about it. 

Sunny Days

 

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 tearing up.

We have hoped for this day, I have feared this day might not come, we have judged our every move from getting groceries to attending school on its possible effect on this getting to this day. We have endured hospital stays where we couldn’t see each other, holidays apart, long nights scared that we might lose someone before we saw them again. 

I am deeply grateful for science, for logistics, for pharmacists, even for website builders. The string of people required to get those shots in our arms, it’s amazing.

Despite all the current social chaos, the heated climate (both figurative and literal), we are an amazing society when we want to be. 

 

Spring Is So So Close

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. 

Full Upright Position

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.

 

Pancakes

      


 

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. 

Some Days

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? Some days the outside pressure to perform as a parent delivers a lot of internal guilt and self doubt...

...some days, your daycare sends proof! Bwaaahaaaaaaaaaa

Holy Crap That Was Awful

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 feel like I did in September. Less a few side effects still lingering (neuropathy, finger nails, cold bald ass head) of course.

I can’t explain how chemo toxicity inhabits your entire body. And when it’s absent, your entire body is released. Like childbirth, I can already see the visceral memories of my chemo side effects fading. The suffering of this treatment phase is over, my energy is returning. 

Don't tell Paul yet, I want dinner in bed again tonight.

Spring Is Coming

 

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 very understated way, the results are “a dramatic improvement”.

The tumors are gone. The lymph nodes, all of them, are clear of cancerous activity. Gone.

It’s the best possible result from chemotherapy. It’s most likely because my breast cancer type is known to respond so well to the HER2neu agents combined with the chemo drug. The care team will be proceeding “like they would with someone who is stage 3”.

I’ve been absorbing the news, staring at the images. Already, I’m inundated with information about next steps, doctors appointments to be confirmed, calls and texts to schedule surgery. It’s all happening fast, like the initial diagnosis. The first lesson of cancer is it controls your schedule. 

I may have been pulled from the brink, but I can’t pull anything past Mom!

As I explained that my surgery will be scheduled for the middle or end of March...

“So no trip then?”

 

A Good Day

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.

Inauguration Hot Take

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 Ohio turnpike (excellent waysides!) when I heard the American Carnage speech; I’ll always remember the camaraderie with other carloads of women’s marchers headed to DC as we listened.

I was not ready to love Garth, but there it is, I do.

I really really want a hard copy of this week’s Scholastic.

The leadership of one person does make a difference. The integrity and dedication of a team of many competent people makes a difference.

We have a lot of work yet to do. 

There Will Be A Buddy Movie

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 so dimmed. 

Also he would probably ditch the cat in a hot second if it meant more time on the Nintendo Switch but whatevs.

Christmas Chemo

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 moving that damn Elf, despite my efforts to suppress them, my thoughts turned to cancer and not wrapping paper. 

 

Why are there so many types of diarrhea?

Is this what my bare head felt like when I was a newborn?

Just how many red blood cells does a person need?

Why do I crave a pineapple upside down cake?

Why did no one tell me about the bloody noses?

Someone needs to make nice plastic flatware.

Contacts, contact + readers, glasses, glasses then readers, back to contacts. Will I ever see right again? 

My fingertips are numb. Or are they just cold? 

I really didn’t ever need to see my fupa in that bald condition.

Why does it take all my energy to text someone back?

If I just stop going to chemo and pretend this never happened, what then? (Being mortally ill without ever feeling sick is very very strange)

I really don’t want to draw my eyebrows in again today.

How many more Christmases do we get?

Ok, time to think about something else and pack the ornaments and tears away. Goodbye Elf. It’s been fun, but it’s over. It’s not you, it’s me. 

Holiday Mood

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”

Love Language

 

 

 

 

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.

Simple Questions

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

 

Chemo In The Time of Covid

(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 you have all that hassle for your family and get sick yourself”

Etc, etc. It is very different chat than three weeks ago when my chemo nurse freaked me out sharing her unsafe Halloween party plans. Wisconsin is currently exploding; for weeks now we have been one of the six worst states for cases, geographical spread and hospitalizations. Tragically, the death rate will follow the same trend.

Even little things are affected by the recent surge and hospital overload; for example the hospital pharmacy is perpetually backed up. I’m on hour two waiting for my meds that were supposed to start at 10am. And of course Paulie couldn’t even be in the building this time. Previously he could at least be in the waiting area, and he could be in the room at the diagnostic appointments, but no more for any new patients now. Can you imagine getting your disease diagnosis and prognosis news alone?

I’m glad they instituted the changes for safety but for total patient care it fucking sucks. I really feel for anyone needing medical care during this time.

Stay vigilant everyone! I know we are fatigued; its exhausting to maintain a constant Threat Level Ten. Hopefully our new leadership will give us the scientific information, competent pandemic team, and compassionate & coherent speeches we all need to persevere and push through to better days, with more lives saved than lost.

Legendary

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 year before, as Frankenstein’s monster.

 

DIY Chemo

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. The pharmacy mixes it for $138.00. Unmixed, the ingredients are $18.00.

Guess which way Paulie went.

 

This Is Not A Journey.

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 also ok.

Journeys are fun. This is not a journey. I hope, someday, it will be just a story.

 

Crap Year, but Always a Quality Man

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.

Pat In The Covid Era Is Still 100% Pat

   
 

We helped Mom move into a new apartment in her building the first week of July; one that is just a bit roomier so she can have more studio space, and it has an updated kitchen. She had quite literally worn out the previous unit’s 1970’s era kitchen. I’m still haunted by how close in time frame that move was to our Covid exposure, but somewhat relieved when I recall that we were extra diligent about masks and keeping physical distance, especially from Mom. And the kids haven’t been in her presence at all since they had returned to daycare. Still, it was a close one, and it nags at me.

So, we certainly don’t see Mom in person at all now. But that doesn’t stop us from getting the new place set up right. Some things don’t change, life marches on, furnishings must be arranged. I mean, have you met me? And we all know Pat hasn’t changed. Her reply to my photo messages for example:

“No I threw those pots in Chicago. Yes it’s a crock pot. One fan for head the other for feet. glad to make your day. Mom”

 

 

The Call Is Coming From Inside The House

The night before the positive case notice, when we still had summer at our house.

There’s a lot of Covid information out there, and a lot of it is confusing. Sometimes there’s a source that combines smarts, facts and a style of communicating that really works for me. Below is one of those posts, and very timely one to boot.

This bit of critical information became very real to us when I asked my physician father if we had to be masked indoors all the time with Charlie even if there was a good chance of already being infected (it was 10 days from exposure to test).

He explained that the initial amount of virus as well as EXPOSURE OVER TIME can affect how sick you get even after initially infected. That bit of information, easily absorbed in a visual and visceral way, made it much easier for me to embrace this whole-family, always-masked Isolation stage with a bit of hope. Having an action that I can take to help my family is taking back a little bit of my role as a parent.

The saddest thing for parents and caretakers is when this thing gets in your home. Until now, this house was our safe place. The very place where we had stayed for so long to protect them.

——-

Here is the post I’m referring to:

Hi, I'm back as Robin-Schoenthaler-the-Boston-cancer-doctor-who-writes-about-Covid.

(And it’s okay with me if you want to share.)

Today I’m talking about how Masks May Be Magic.

Massachusetts is still okay, trending up a bit in terms of numbers of cases but hospitals are fine, deaths are low.  

The rest of the US outside of the Northeast:  it’s just unspeakable.  The numbers are unfathomable.  

How bad is it? 

Here’s an analogy:  

More or less, the US is having one Wuhan a day.  Remember how terrible Wuhan was and ended up being?  That many cases are happening every day in the US.  

Here’s some statistics: 

How fast are cases exploding? 

0 cases to 1 million cases: 98 days

1 million to 2 million cases: 44 days

2 million to 3 million cases: 27 days 

3 million to 4 million cases: 14 days

 

Here’s a story: 

Every Thursday night I listen to this whiz kid Infectious Disease doc from Texas talk about Covid.  She talks non-stop for an hour and whips through about 55 papers, summarizing study after study after study.  She’s like the kid in high school who was absolutely the smartest person in the room and made it look easy; she’s amazing.  

At a recent broadcast she was quoting a paper and all of a sudden she started crying.  I couldn’t even figure out what was happening (I was doing dishes in my Eternal Multitasking Fashion) but when I stopped loading the dishwasher and looked at my computer screen, there she was, wiping her eyes and weeping.  That’s what life is like in Texas.  

In the midst of this misery, let’s talk about something positive.  Let’s talk about masks.  

I love masks.  Right now they feel like are like our magic protectors, like holding garlic up in front of Dracula, or wearing a special amulet that keeps the evil eye away.  

Or maybe like wearing a condom and not getting syphilis.

Why are masks particularly important with Covid?  

Well, as with Everything Covid, “we are building the plane while we fly it.”  We are accumulating data as fast as we can and some trends look promising. While some of this may change over time, for now this is what we know.  

First off, it appears, unbelievably, that the rate of people who are infected but have no symptoms is around forty percent.  (These are people who had positive nose swabs but stay completely asymptomatic.)

FORTY PERCENT!  It’s awesome that four out of ten people don’t suffer from the disease at all, don’t have long-term sequelae, etc.  

But it also means four out of ten people who have Covid have absolutely no idea they are infected, don’t know they’re contagious, don’t realize that every time they speak/yell/cough/sneeze they may be spewing tons of infected confetti all over the place, don’t know they may be an actual danger to family and friends. 

But if they're wearing a mask, they’re not so dangerous.  

There is now a good amount of research, old and new, showing masks filter out the majority of viral particles.  All masks matter, to varying degrees.  Without getting into a song and dance about the exact numbers, here’s the basics: 

 --N95s are better than surgical masks

 --cloth masks are way better than nothing

 --two masks (one on me, one on you) are better than one

 --having it on your chin doesn’t work 

Masks can work to protect other people from your infection. 

and

Masks can work to protect you from other people’s infection. 

and furthermore

Masks can work to protect you from getting ANY virus inside you. 

Masks can protect you from getting LOTS of virus inside of you.  

You always need a certain amount of viruses spewed at you like the above mentioned confetti to get sick. It can’t be just one solo virus — it has to be thousands.  Masks have been shown to cut those numbers down.  

Even better, there is evidence that the volume of virus that gets into your mouth or nose is related to how sick you get.  So when you wear a mask and hang out with people wearing masks, early studies seem to indicate you are increasing your chances of having milder disease. 

It even appears that masking increases the rates of being asymptomatic!  In some very interesting early studies, we are seeing this happen. It’s happened on cruise ships, it’s happened in food processing plants — even in the midst of big outbreaks, infected people who use masks are more likely to be completely without symptoms.

When we don’t wear masks, we have more deaths. We saw this so tragically in Italy and New York among health care workers. 

When you do have places mostly masking (eg >80%) you may well see fewer deaths.  San Francisco (a great masking place, like Boston) has had ONE death since July 16 despite 1500 new cases.  And deaths have stayed low post-surge in the Far East countries where masking is part of the cultural norm and most countries where masking had been mandatory. 

This is not to say that masking is a miracle cure-all; we still need physical distancing and hand washing and staying home when sick.

Still, what a lot of reasons to wear a mask: 

 — you don’t have to walk around with the guilt of being Patient Zero

 — you have less chance of getting it

 — you probably have a higher chance of being asymptomatic

 — you may well have less chance of getting super sick

 — you may have less chance of dying of it

And you won't make your doctor burst into tears in the middle of a presentation.

by Robin Schoenthaler July 26, 2020, Facebook.

In No One We Trust

I had a blind spot.

I wear a mask all day at work, we require our customers to do so too, and we control the entry to the store to keep capacity low. We only see my mom outdoors, and with masks on. We’ve cancelled every trip, even Elkhart Lake because the hotel didn’t have a mask policy for guests. We haven’t set foot in a store or a restaurant since March. Paulie is working from home indefinitely. Viv’s two-week day camp doesn’t allow contact with parents, requires masks when indoors (yes for the kids too), does temperature checks and screening. Viv’s regular summer daycare has the same tight procedures—no parents in the building, masks, no crossover with groups of kids, temperature checks and screening.

Charlie.

Charlies daycare, which we started back five weeks ago, just didn’t ramp up the way I expected. Their occupancy when we started was super low, and I saw masks on about half the parents. When I saw an unmasked parent, I just waited in the car to time my pick up or drop off after they exited. They had hand sanitizing stations, closed early for daily cleaning, and a list of covid protocols that included social distancing, no room crossing, etc.

But the two biggies—controlling entry in the building and masks. On those they seemed to drag their feet. I kept nudging; I asked, I wrote. When I sent a list of my concerns, especially compared to the two other centers we experienced doing it better, they only made the two smallest changes on my list. They buried their response to the mask question in a technical non-answer four paragraphs down. As the numbers continued to rise these last two weeks my gut said something isn’t right.

But my heart.

My heart just didn’t want it to be true. My heart kept saying:

We love Miss V. Charlie loves Miss V.

I want him to have that same experience in her room that Viv had.

We love Miss K and Miss C and Miss A. They know him, they care about him. They know his stubbornness and laugh at his silliness. And Miss S! Miss S who recorded story time EVERY DAY for weeks during shut down! 

He needs the interaction, he needs to see his playmates.

He’s so much better since he’s been back! Behavior, attitude, resiliency!

He’s so much happier and energetic.

He loves his playmates, he talks about them all the time and is so happy to see them every morning.

He needs the routine.

I don’t want to abandon my friends. My co-parents. (Daycare providers are our co-parents.)

 

I kept thinking, maybe just need more time to get it, they will see the writing on the wall with the numbers. Maybe they have good reasons, maybe I just don’t understand, maybe there’s something they know that I don’t? (about daycare regulations). These people take care of my family. They are part of my family structure. They are trusted. But, but...why is the director not wearing a mask? Why is the owner dodging my questions? 

The day that we finally said, nope, they have to adopt masks or we will pull him out, the day that we had finally decided was our deadline, was the literal day that they had a teacher test positive. One of Charlie’s teachers. 

As I communicated more these past two distressing days with other parents and teachers, it became clear that we were not alone in our concerns. And that we had been misled. They had not been truthful when I asked if other parents had concerns. It is clear they had no intention of ever adopting a mandatory mask policy. In fact, in the days just prior to the positive case, they had received an exception to the City of Milwaukee mask mandate that they had ACTIVELY APPLIED FOR. 

When we picked Charlie up, in total crisis mode, I asked the OWNER of the center, “Why no masks!?”

She replied “Well, we encourage masks”, as she handed me the Close Contact Exposure notice from the health department

”Will you make them mandatory now? Now that you HAVE A POSITIVE CASE? They reduce transmission!” I screamed, unable to contain my rage.

”Well, it depends what you read, not everyone believes...” Believes. That word.

This is the insidious danger. This woman, who controls the livelihoods of 20+ people, who had power over the well-being of 40+ families and children, doesn’t BELIEVE in masks.

And that failure to understand science, that failure to trust experts, that failure to see your community and employees and clients as worth taking extra precautions for, that failure to see your organization as part of the larger fabric of society has broken our lives.

And our hearts.

 

--------

(7/21 Update and Clarification: they applied for an exception to the City of Milwaukee mask mandate for children age 3. They complied with the City of Milwaukee ordinance for adults (staff, teachers, parents) to wear masks IN ONLY THEIR LOCATION THAT FELL UNDER THAT ORDINANCE. They did not apply that same protocol to their other locations, because, as they repeated in two emails and a phone call, our location's municipality did not have an ordinance). 

Big Thoughts for a Little Guy

“Firefighter Dan came to our school Mama and we sat outside and he put on a funny mask and we got to talk to him and ask him questions after he gave us badge stickers”.

Oh, what question did you ask Firefighter Dan, Charlie?

“I asked him about the Great Chicago Fire”.

Wait, what? You asked about what?

“Yep, but Firefighter Dan didn’t know too much”. (shakes head)

A Little Bit of Fun

Things are not back to normal. They shouldn’t be. The kids are back in daycare and I’m back at the store, which means no other activities for us, our exposure is just too great. I’m worried for myself and for others. I’m worried I’ll give it to someone. So, while the rest of the world returns to entertainment and bars like nothing ever happened, we are doing a daily balancing act.

To treat the kids this weekend to a bit of at-home summertime “normal”, I ordered a HUGE inflatable kiddie pool water park thingie...

It came in a tiny box.

This is going to be fun.

Scary New World, Same Idiots

I went out beyond my house yesterday for the first time in many weeks. My exciting adventures out into the world have never before had such a modest destination. How did it feel? What thrilling things did I experience? First, I have forgotten how to drive. And Brown Deer Road is still uuuuuuugly.

When the governor relaxed some restrictions for retail businesses last week, I was extremely nervous. I felt pushed to move faster than I could be ready for, it moved the timeline up by two weeks. But I was coming around, with every preparation it got easier to imagine a store being open. And now finally having help (PPP funding means my furloughed coworkers are back!), I felt a bit better that it could be done safely. I was beginning to see the path.

Then, wham, the court knocked down the Stay At Home order, and people got stupid. 

Driving out to the shop I saw many groups of clustered people, very few masks, stores open, clumps of people waiting in unspaced lines and inside small stores, non-family groups walking...a city-wide rush to be alive. All made worse by a sunny day.

Driving down three commercial strips I could see many examples of good Covid and bad Covid practices in action, sometimes right next to each other.

Crowds of people waiting inside closed doors at the Jimmy Johns? Not good. A cluttered second hand junk stop with no clear shopping path? Not good. Groups of friends outside catching up and loving on a neighbors puppy dog? Nice, but not good. The lake must be the new destination for lesbian couples because no way dozens of pairs of walking ladies are all each related.

You know why I get upset when I see someone out without a mask? Because even though yes, you probably don’t need it on a solitary walk, I don’t know your plans.

I don’t know when I might turn a corner and my solitary walk bumps face first into your solitary walk. I don’t know if you have a mask in your pocket and just needed a break. I don’t know if you aren’t wearing one because you forgot it, or because you don’t care about the risks to yourself and others. No mask leaves so many questions.
Wearing a mask says you’ve taken the time, the effort to be safer. It takes effort to get one or make one, it takes priveledge in many cases. A mask is a sign that you’re taking this seriously and I can trust you. And if you are privileged, helllloooo my white lady neighbors...who the fuck do you think you are not to wear one? Oh right, that says exactly who you are.

Back to my drive...from the road I could see that Traders Joes has it right, with spots marked outside where folks were waiting 6’ apart (actually looked like maybe 8’). I felt confident that I could go there and be as safe as possible. (If I ever dared into a grocery store again. I have got the online ordering & random night time delivery thing down, love it, might never go back).  The risks are too high, the chances too random to allow myself to feel anything but secure.

But that’s just my concern for myself and my family. What about the employees? The staff that have to be there to serve and corral the reckless? Try to manage customers and sanitation when the company didn’t get them enough equipment or instructions? Who do you think you are to put your need for a sandwich above their health and safety? Who are these corporations that have opened without proper training, supplies, and support? I won’t be a part of that. If my destination doesn’t do it right, I’m not going.

As you can see, I even like my parking socially distanced.

 

Winning Parenthood

Here is a photo of 3 1/2 year old Charlie painting the basement wall during quarantine to show that Paulie isn't always a softie.

Paulie and I have long argued that he dotes on the kids too much. Of course, the other side of that argument is that I am Slacker Mom. Or Strict Mom. Or just Exhausted Mom.

 

Tonight, as usual, tired Paulie was drawing pictures of the full cast of The Muppets on demand, making multiple snacks, and sitting in a chair 5" off the ground. I offered to take care of the kids the remainder of the night so he could go rest early. Two minutes later Charlie announces it's nighttime, puts down his crayon and goes up the stairs by himself. He gets undressed and tucks himself in. Viv makes them self an ice cream treat and then follows.

 

So, I'm either Slacker Mom or completely, 100% totally boring to my kids.

 

 

 

Timing Is Everything

(Delivery truck and crew by Viv, circa 2018)

Pro Tip: when supporting small and mid-sized businesses, keep to the services and products they have OFFERED. Don’t ask for more. Don’t ask for an exception. Don’t ask for shit Karen. 

The phased back to work plan can work, but only if we observe all the safety guidelines. The next phase can’t happen is the first phase fails.

Don’t assume everyone has the capabilities to meet those safety procedures right this minute. Just because they technically CAN do business doesn’t mean they are READY to do business.

Many businesses laid off and furloughed their staff.  Bringing staff back too soon is financially risky, and not the right decision for folks who make $50k or less. Many staff CAN’T come back because they have underlying health conditions or are caring for their own families. Or they don’t want to because they know their job functions are inherently risky or that their employer may not be capable of making their work environment safe. Or they may just not be ready to come back for WHATEVER DAMN REASON THEY HAVE THAT IS NONE OF YOUR BUSINESS ACTUALLY.

Businesses literally probably cannot physically do more than what they offered you. Be grateful.

Covid Kids

Easter is a bit different this year. No big beautiful family meal at Aunt Lisa’s, no dressing up fancy and no Easter egg hunt at the park. Instead only six eggs to color, scrounging up strange kitchen drawer candy, raiding the present closet for a basket filler.

This is week four of the quarantine, week four of the emotional roller coaster, first full week of homeschooling, second week where I have no sales team left to work with, fourth week of no customers, fourth week of no answers. 

What will the kids remember? The tears and arguments? The short tempered parents? Being separated from friends and grandparents?

Probably not. They are ages three and seven. They will remember the year the Easter Bunny brought legos instead of marshmallow eggs. (It’s a dangerous precedent really.)

I remember in tough times, not the trouble itself so much as the comfort my mom employed. Sometimes it was for her comfort, like her favorite food (creamed eggs on toast), sometimes for our comfort like holding my head in a certain squeeze, or reading at the end of her bed.

I don’t need the iron this morning, or a fresh pair of tights, or a pan of food to bring, or to rush out the door hollering to “get in the car or else!”.

But I sure do need some hope.

Some hope to help me take these six eggs and, like the lemon to lemonade adage, make something of them. Maybe egg salad. 

But not creamed eggs on toast. Because it’s gross.

At Home Learning

I’ll always question why I asssumed it was safe to have the kids at Grandmas house the first week and half. Once I developed a cold (only one day of low fever, no other covid symptoms), it came crashing down on me just how selfish and risky that was. I hope that lesson wasn’t learned too late.

Now that they are at home with us all day every day, I’m learning first-hand how amazing Grandma time was —activities, schedule, lessons schoolwork. And the snacks! Oh the snacks. I’m finding out just how impossible is it to Work From Home and Parent At Home and Also Be A Teacher. It is impossible.

You know those work-from-home memes about discovering the “work personality” of your spouse? Paulie is about exactly what I expected, though slightly more organized. In contrast, during their first classroom video meeting, I was surprised to find out my kid, my very quiet kid, is the bold over-sharer! Good to know.

And one final lesson during this pandemic—the entire first two weeks I thought “WFH” stood for What Fucking Hell, not Work From Home.

I like my version better.

The World on Fire

This has been one of the hardest weeks of my life. We say that and then something worse happens. I began this blog because of 9/11. 

This is worse. Worse personally because I have more to lose. Professionally because I have more responsibility. Emotionally because I also lost a friend to fucking murder last week. And for the world, because it involves the entire world. (Though the fallout of the wars after 9/11 would also qualify but who’s keeping track).

In trying to make sense of what we are facing with this virus, I’ve been overwhelmed by the scientific information, underwhelmed by the government response, and feel generally confused.

The post copied below really helped me today.

I was finally successful in quitting smoking years ago because I heard a radio snippet beautifully describing what is actually happening to your lungs during morning cough. The lungs sweepers are waking up and sweeping out the junk like seaweed in the waves and when you take that first delicious morning smoke, that puts them to sleep and they wilt and stop working and that is why the cough subsides.

This firebreak analogy speaks to me in the same powerful way:

——————————-

 

Hi Friends:  It has been a week since my last post.  If you understood it, you realize that the increasing numbers of people with Covid 19 in the US are what we would have expected.  We have had an escalation of interventions as a reaction to the numbers which might give us pause to think we are worse off.  This is not true.  If you shoot an arrow, it takes time to hit the target.  If you intervene in a pandemic, it takes 4 weeks to know if the intervention was successful. On March 9th, the cover of the New Yorker showed our president with a mask over his eyes. Since then, the arrows have been launched..  Let me provide an example of what is happening that I hope helps you understand our current situation.

 

Imagine a huge forest.  Lightening hits a tree, a fire starts and begins to grow.  Smoke is seen but no sky jumpers are sent in because the lookout person is probably exaggerating. (This is the point at which we could have confined the virus).   The fire grows out in all directions getting larger and larger.   It becomes impossible to ignore and the decision is made to create a firebreak.  The firebreak needs to encircle the entire fire. Measures are taken and creation of the firebreak is underway.  (Increased testing, social distancing, and closing public places) The bosses know the fire is increasing, and nothing can be done to save the trees between the firebreak and the flames.  (The current numbers we are seeing).  Will their intervention hold?  As the fire comes closer, the bosses question whether it is big enough to hold back the umrelenting inferno.  They evacuate houses on the non-fire side (Telling people at high risk to stay home and call for extra help.)  The bosses recognize that when the fire hits the firebreak, sparks will fall all over the forest and they will need to be aggressive in trying to put them out.(Without testing, the sparks are landing and we do not know where to start stomping them out.)  If there are too many new fires started, the firebreak only slows things down but still allows time for more help to arrive in the form of more weapons (Testing, drugs(Remdesivir is going into a large study) and vaccines) or rain (Summertime and the realization that the vast majority of trees will withstand the fire, i.e. big Minnesota pines survive and then release pine cones only after heat! )

 

Our fire, Covid 19, is a nasty bug that first emerged in an outdoor open marketplace in Wuhan, China in early December.  The person who contracted the virus unfortunately got on a subway in a metropolis of 11 million people. The virus was officially recognized when 41 people came down with pneumonia 27 of whom had been in this same market and 14 from other parts of the city.  On Jan 1, China informed the World Health Organization (WHO) and closed the market. CV 19 then spread from Wuhan to a cruise ship, to a megachurch in South Korea and to a mosque in Iran. The germ loves crowds and hitching rides on asymptomatic people. Italy went from 3 dead to 3000 in one month. 

 

In three weeks or so, we should be able to see if our current actions, our firebreak (Social distancing and school closings etc.) have helped.   Nothing has happened this week in the U.S. that was unexpected with regard to the number of people infected. All of these infections are the result of our past inaction.

 

So, what to do? Try to ignore the daily heat being generated in the media.  Limit your TV watching of news and social media because it is designed to increase anxiety. There is a lot of nonsense, too.  NPR is calm and does a nice summary.  (Yesterday’s newscast ended with a performance by Yo Yo Mah, the famed cellist.  ‘Songs of Comfort’ provides a way to use the arts as a positive resource in times of crisis). If you are restricted to a home quarantine, stay put along with anyone who lives with you. (My suggestion.)  Interestingly, we are in a phase where the absolute risk of an individual contracting Covid 19 in the next three weeks is low. (The fire is small compared to the forest).  The reason we have built a firewall is to eliminate the possibility of a person with Covid 19 from passing it on to others.  If restricted to home… learn from the cloistered nuns.  Set up a daily schedule of routines. For example,  I no longer have a swimming pool to go to, so I started Yoga. Joan is learning the Ukulele.  Bake bread.  The Washington Post reminds us that Isaac Newton had to leave the university in 1665 because of a plague.  He went to a farm to think.  It was during this time that he began his work in calculus, theories on gravity and light. Thinking and research at home may lead to something.  Have your uninfected neighbors help you by bringing supplies to your doorstep when they go out.  (Work out a neighborhood system).

 

The average incubation period for Covid 19 is about six days, and the main symptoms last on average six days.  Then recovery. The average time to hospitalization from onset of symptoms is about six days and marked with shortness of breath and fever. If you have symptoms of “flu” at this stage in the epidemic, you probably do have the flu, and not Covid 19. It would be nice to have testing available to find out and we will soon.  The recognized cases will rise as we do more testing and stop missing mild cases.  the death rate is the number to watch regarding progress.  Four weeks from now, we will see if we have slowed this thing down. It will be brutal for awhile.   It is hard watching a maelstrom rushing toward you hoping the firebreak will hold. We live with anxiety or faith.  Personally, I do believe I hear planes coming with lots of fire retardants!

 

If you want to imagine killing the nasty virus, imagine doing this experiment.  Fill a sink with water.  Pour some cooking oil over the water’s surface.  Then add one drop of liquid soap.  Instantly, the oil’s film will disappear.  Just like a virus membrane!  That is what soap does to this virus.  Wash your hands frequently and always for 20 seconds to get that soap in all the little crevices.   In the end, there is no doubt, Covid 19, the fire, will end, and we will move on. We will be funding NIH and CDC a lot more! I hope these thoughts provide additional context for whatever you are experiencing and help with your understanding.  (John Bachman Facebook 3/19/20)

Unlearning Society

I honest to god was shocked when I found out intersex “correction” surgeries on newborn babies are still happening. I thought that doctors would use some other more modern scientific method to determine gender. Of course at the time I ignorantly assumed gender was always in some way physical (chromosomes?). I know better now.

I learned that these surgeries were still happening during a casual discussion of all the various ways gender occurs naturally and how far we’ve progressed in understanding. Or so I thought.

As my physician father said, “It’s not a medical problem, it’s a society problem”.

Ok boomer, you’re right on this one. :)

(I’m referencing this article:https://www.cnn.com/2020/01/10/us/intersex-surgeries-gothere/index.html)

 

 

 

These Are The Best Days

Today three-year-old Charlie grasped me from behind with both of his little stick arms, buried his face in my ass crack and said “Your butt is amaaaaaazing!”

Happy Birthday me.