girl at large

How Blue Is The Sky There?

I have an email account for Felix just for the purpose of two apps, a by-product of Covid remote school. Sometimes I look at it to see what it’s like to have an empty inbox.

To feel the cool, fresh breeze against my brain. The nothingness, the sweet calm.

No one asking “Did you get my last email?”. No one reminding me to resend the attachment that was, in fact, attached. Not a need to reply “per my last email..highlight highlight highlight”. No chains of Reply All that have NOTHING TO DO WITH ME OR MY JOB. 

What is that like? What color is the sky there? Are the birds always singing? When I see the blankness of that screen, I hear birds. Sweet sweet birds.

We All Have a Strength

Charlie asked me to explain Daylight Savings Time to him on the walk to school today. After fumbling and failing miserably as we walked across the school yard, I said “Shush we’re walking through all the sixth graders and I still have anxiety.”

I then proceeded to explain Anxiety with the knowledge and confidence of a TED speaker.

History zero. Mom one.

 

 

This Again

Some of it is rather twee, and I am very very rusty, but I’m doing this again.

And by this I mean spending all my money on supplies.

No Shit

My nurse navigator shared some “interesting news” with me this past week. At a big Breast Cancer conference, a study was released that shows Kadcyla (my post surgery infusion chemo) is radiosensitive.

In layman’s terms, it makes the side effects of radiation much more intense, and they start sooner.

NO SHIT I TOLD YOU FROM THE FOURTH RADIATION DOSE.  

Apparently they are now revisiting all their patients on the same regimen currently in radiation and “watching them closer.”

You’re welcome. 

I’ll never forget saying I can’t swallow and they said “already?”

Unsend Unsend Unsend

I use my work calendar as my personal calendar too, for tracking appointments and school events, things like that. And doctors appointments, lots of doctors appointments. I copy or “invite” Paulie to them so we can arrange pick ups, etc. Very handy for the usual family logistics.

Today I was double checking my schedule when I noticed that I had invited a Paul to my gynecologist appointment next week. A Paul. Not MY Paul.

To my gynecologist appointment. That I had titled “Kate’s Coochie Check Up”.

I invited a CUSTOMER.

AND HE ACCEPTED.

 

Eat Pray Paint (barf)

I’m taking a watercolor class this morning. I don’t like school. Cancer has been hard, but school was my first trauma. Charlie gave me some drawing advice: “Remember to do as many details as you can”.

Mom said I’m going to love it. A Saturday morning watercolor class during breast cancer treatment, a middle aged woman trying (again) to paint— it’s so cliche. 

If I walk in and smell the menopause, I’m outta here.

Wednesday The 13th

L
Audubon Center 2020

St Joe 2021

Another October.

Last year, during the diagnosis, I wasn’t sure there would be more Octobers. You can see it on my face, I thought I was possibly leaving my kids. In the days following the diagnosis, we walked the soggy beach, my camera thumping against my hip, tears in my eyes. I tried to steel myself for the treatment to come. I was so sad for the new reality facing my family. Even if I didn’t die immediately, I knew this experience would affect them, change the dynamic of our unit, alter their childhood. And I wondered if Paulie and I might splinter; better unions than ours have failed under less. I don’t ever want another of those Octobers.

I had my infusion on Wednesday this week, the 13th. Exactly one year ago to the day that I had my heart-crushing “Cancer Team” meeting. I was so hopeful for that meeting. The three weeks prior had been barrage of tests and biopsies, and at each appointment always the same promise of the Fantastic Cancer Team approach. The Team Meeting is when I’d meet my oncologist, my surgeon, the radiation oncologist, even the physical therapist. All those wonderful experts there to see me through this thing.

In those frightening, unsteady days, I clung to that meeting.

Paul and I held hands in the room, anxious and yet still hopeful. We were getting the best possible care, the best approach, the Team. Then a sole doctor walked in, sat down, slid the Kleenex box across the table, and said there’d be no other team members joining us. The air left the room and left my body. 

And with it, my hope.

That is how they told me I’m stage IV. I’m only now, a year later, as I emerge from the fog of treatment, absorbing how cruel that was. And how it damaged me. I’ve been obsessed about the IV, haunted by it, I can’t let it go, I can’t integrate it.

Because, here’s the thing. They had not yet done the bone scan or brain mri. But one pesky lymph node chain in my neck had glowed on the PET. That one fucker crushed my entire outlook. I wish I had known that meeting day that it was the only, little thing making me IV. 

In the torturous days that followed, I had a bone scan and brain MRI. Both were completely clear. In some staging scales, that means I’m stage III. And most importantly, it means I have no disease outside the region, except for those neck nodes.

Had we known that on Team Meeting Day, I might have actually met my team. And I would have been spared some agony.

Of course, I did eventually meet them as my treatment shifted gears when the chemo was so successful. I was not at all amused having to tell them each individually my story all over again each time. Gee, if only we’d had that Team Meeting. 

So, here we are again in misty October. I’m still fearful, but also cautiously hopeful. The family is intact and resilient, if a little hooked on doughnuts. I’m still here, it’s only my boobs that aren’t. 

Birthday Season

Marking time can be a delicate and dangerous thing for me; as another season passes and annual events return, my emotions range from contentment to despair.

Felix once asked me, at about the age of five, the meaning of “bittersweet”. After I explained it, he said “Oh, I know that feeling.” And I know that he did, my old-soul son. 

This October holds both the anniversary of my diagnosis and the birthdays of my loves Paulie and Felix.  My loves are so beautiful. The leaves are golden, the ground is damp, and the very air is bittersweet.

In The Company of Dangerous Men

You were arrogant, and set me up to be attacked. You literally lay in wait for your moment to belittle me, a stranger to you.

You enjoyed being superior. 

You, who do not know me at all or our company’s history or policies, called me a hypocrite.

 

You opened our relationship with an attack that you enjoyed doing. Your body language (leaning back in position of power, tapping my business card, legs crossed) said I’m pulling a power play and I’m enjoying it. 

 

Me, in the position of lesser power because I am your guest, I am trying to keep your companies business and I make my living literally by whether or not you buy from me, AND because I’m a woman, had few choices.

 

When I tried politely to tell you what it was like to be us, how you were WRONG, you spoke over me, interrupted me and argued meaningless points like “stormed out” vs “walked out”.

 

At one point, in pathetic desperation, you pointed your finger at me and accused me of being biased. Why? Because I lumped you and your companion in the same category, the category that suffers from so much bias (eye roll). That category is “rude people”. If you don’t rein in your companion’s atrociously bad behavior, guess what, you are also guilty.

 

You took every opportunity to prove your weak WRONG point, and didn’t consider for a moment that you could be wrong until I showed a visible emotional reaction, stood up to leave and told you that I couldn’t work with you.

 

Only when threatened with me quitting/firing you did you stop to consider my position.

 

When you did apologize you didn’t apologize for your initial behavior or your behavior at our meeting but for “causing you stress”. A classic move, blaming my reaction to the problem instead of owning your WRONGNESS. You made it about my feelings instead of your feelings which were superiority, inferiority (because making this point was so important to you I assume you are actually quite insecure in your own abilities) and power. You literally looked satisfied when you used the word hypocrisy. It was delicious to you. You enjoyed making someone else feel discomfort and fear.

 

You were so committed to being right that you then continued to bring up another point, this one truly meaningless, just to stick it to me. Pointing out a minor website error benefits nothing except your own sense of self importance. When I said you probably have to do a hard refresh to see the update you then went BACK TO YOUR OFFICE TO DO THAT just to prove me wrong. I said well, maybe it just got missed, it’s not a big deal.

 

When I checked later, because the website is also my responsibility among all the other jobs I have to do to keep our business rolling through crises after crises (one of which has been exacerbated by anti-maskers like your buddy), it turns out you are WRONG AGAIN. I said do a HARD refresh, which is different than just refreshing your browser. The error you referred to was indeed already updated at the time of our meeting. Of course, it was my own insecurity that made me double check. Here I was, reacting to you, taking my precious time to double check a minor error WHICH DOES NOT MATTER.

 

It only mattered as a tool for you to again show your arrogant superiority over me and make me uncomfortable while trapped in your presence.

 

You are an asshole.

 

 

The Dork Bucket List

Earlier this week a colleague said they would soon be turning forty. I said congratulations, oh your forties are going to be great! He shook his head and raised his eyebrows, incredulous…what? 

I always knew I’d enjoy being any age but 20. I recall my thirties being the decade of anger, but a good motivating anger. I felt confident that I would hit my stride in my forties. I’ve also been fortyish for quite a long time…

At 16 I stole my parents car to go to Chicago to visit the museums.

When I was 28 I really really wanted to go on a cruise of Norway that featured tours of ancient mills and tapestry museums, guided by a textile historian. 

When I lived in France, I took painting classes at a holiday destination designed for retirees, which I adored.

When I was 35, I couldn’t get the coastal weekend place I really really wanted because it was a 65+ community.

These were also my peak crochet years.

It’s not a secret that my mortality is on my mind, that this summer’s weekend adventures are bittersweet and often booked with a frantic sense of doom. Restricted by covid, treatment schedules and reality, my travel bucket list no longer includes Denmark, Japan, South Africa, Spain or even Canada. It’s now the Wisconsin bucket list. 

This weekend’s adventure was in beautiful Bayfield. We ended our visit with a walk around town. As we turned a sunny corner, right there in front of me was an unexpected reminder that I’ve always wanted to visit every standing Carnegie Library…a physical reminder of all the dorky things I want yet to do.

All I really want is to be middle aged for a really really long time.

Seriously?

Covid limbo work times have been interesting, and odd. We are busier than we have been in months.  Eighteen months of pent up demand has been unleashed all at once. Also unleashed—every bad customer’s bad behavior. 

This week I had a live chat customer who asked a question that required a little research. I asked if I could email them the answer later in the day.

”I prefer not to give out my email address”.

Um, ok. Bwaaaahaaaa. On my side of the LiveChat interface I can see their IP address, how many times they’ve visited the website, what pages they’ve visited and for how long…and a live map of their location.

But ok, keep that email to yourself. 

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 Mozzarella  (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.