girl at large

I like to write about life when you have a job, some kids, a fixer upper and a fatal disease.

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  • Wednesday The 13th

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    Audubon Center 2020

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    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

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    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

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    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

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    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?

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    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

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    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

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    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

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    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

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    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

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    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.