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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  • Mothers and Community

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    Someone once said that my Mom and I are so alike we “are like one person”. That was odd, and kinda creepy. We are our own people, but I think, given some grace, what they meant was that we are in synch, simpatico, strongly bonded.

    We are close, but able to have conflict. Loving, but not best friends. She is a mom, not a buddy. And thank goodness, because when I fucked up or when I was fucked up or now as my life is getting fucked up, I needed a MOM. This Mom.

    This woman who in just two months has been elected to the residential committee, taken on shifts at the gift shop, joined the annual festival committee, and is currently mid-coup in the garden club…this working mom who anonymously paid for braces and eyeglasses for strangers kids. This artist who got bored sitting on the board so decided to actually work IN the domestic abuse shelter. This traveler who never before sailed or spoke another language who sailed the Mediterranean in her sixties. 

    This bright light, an Eldest Daughter and my North Star. Also, one hell of a stealth farter. Seriously, don’t get behind her at the Target.

     

  • Outdoor Dreams

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    The arrival of midwestern Spring has been slow and temperamental. The kids have been restless and temperamental.

    I ask them to play outside for at least a few minutes every night after dinner. I have visions of their youth spent playing in a bucolic garden, on a leafy charming street of bungalows as the sunlight dims and the vintage streetlights glow…

    So far, I’ve had to bring them back inside for screaming at “bloody murder” levels because:

    -The hose was too slippery

    -Felix told Charlie he was annoying

    -There was a puddle

    -Charlie had the worst day of his life, EVER

    -The cat got out (and just sat there, but still caused screaming)

    -Someone put a sock on someone’s head 

  • The Yoga Lady Has No Robes

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    I had an unsettling interaction with a provider this week. I was seeking some physical therapy relief for my Woody Fibrosis Neck (caused by radiation), chest scar adhesions, and restricted range of motion on the right side.

    Pretty basic stuff that my usual PT handles well, but this provider was recommended to me because she does Myofascial Release, a relatively new massage/PT technique. The hope was it might do wonders for the chest adhesions and fibrosis especially. What was not new, to me, were the red flags of a provider who doesn’t really get it.

    There was no robe to change in to, and the therapy space was….not ideal. Strike one.

    Then she did the dreaded head tilt, heart clutch and “I feel sooooooo baaaaaaaad for you”. Strike two.

    Then, as we reviewed my medical history:

    Tsk tsking when I said the insomnia is caused by the steroids.

    Saying “Well….” when I said the anti-estrogen therapy was causing joint and muscle pain. 

    And on and on, finally culminating in a devastating dismissal of my very real experience when she scolded me. “You have to get out of your Thinking Brain and do the work to get into your Feeling Brain”.

    Lady, what I have to do is get out of here. 

  • Fear and 50

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    I’ve been ruminating on being 50, dying younger then I planned, and what I want to be when I grow up.

    It’s been a challenging few months; the recent down slope of this Cancer roller coaster has been a long, slow descent this winter and now into spring.

    I’m working on a larger scale painting, something new and also challenging. Charlie visits my table each evening and offers his critique:

    “I like it, it looks just like the picture except without that leaf”.

    “I’m getting nervous.”

    “Afraid you’re going to fuck it up?”

    Oh darling yes. Exactly. 

  • ‘Tis The Season

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    The season to be overwhelmed, over budget and over scheduled. I’m opting out of a lot of things, streamlining the holiday chaos. But tonight we could not escape.

    There are TWO parties tonight. One birthday, one holiday. For kids. The kids explain the parties:

    “Mine is a sleep under but you don’t have to wear pajamas. You can wear regular clothes. But maybe bring a blanket. I wanna bring a small blanket, not a big blanket. No, not that one, a different one.”

    ”Mine isn’t sleep under, but I need a separate bag for my clothes just in case we decide to change it to a pj party. No, my backpack is full, I neeed another bag. No not that one, a different one.”

    “Becky may not like the book, but that’s ok because maybe her sisters will like it. I don’t like it but thank you for getting it for her. I rewrapped it for you”

    “It’s casual, it’s not like a grown up holiday party, I don’t have to dress up, it’s CAAAAASUUUUUAAAL Mom”

    ”There will be kindergartners there, and I don’t know any of them!”

    ”There’s probably some sort of food there, I’m hungry”

    “It’s low key, but for the gift exchange I absolutely have to have a pickle keychain.”

    “Has the pickle key chain arrived yet?”

    “Has the pickle key chain arrived yet?”

    “Has the pickle key chain arrived yet?”

    “Has the pickle key chain arrived yet?”

     

    One party is 5:30pm to 9pm, the other is 6pm to 10pm. My bedtime is 8. As Paulie, ever the modern parenting hero, rounded them up in to the van, I reminisced about my own elementary school years, particularly 1979—

    Me: “Mom, I never get invited to birthday parties or sticker parties and I have no friends”.

    Mom, acrylic nails drying, drags on a menthol Benson & Hedges: “What do you need friends for?”

     

  • Hospital Saga, Part 4. Gratitude Edition

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    It was a rough week, made rougher by interrupting a holiday. Though, honestly I didn’t mind the timing that much because my customers were also unavailable. That was one less thing I had to worry about. An empty inbox is very healing.

    Also very healing are all the wonderful, thoughtful, courageous people in our lives. Thank you ——-

    My rock of a sister-in-law who was unfazed by the dramatic change in plans, and cared for my kids for four days, keeping them full of Thanksgiving treats and distractions.

    My other rock of a sister-in-law who always says insightful and compassionate things and keeps everyone up to date, even while juggling other family situations.

    My dear friend who bought and delivered new flannel pajamas. I won’t call for a ride to the hospital, but I will text request a friend to buy me luxury lounge wear.

    Mom. So many things, lots of phone calls and letting my boys sleep in her room. And loving them.

    Dad. All the medical advice and empathy. I heard you talking to Paulie, you really delivered the steady presence he needed.

    My Portland friend, who called me immediately at the hospital and said “WTF Cheese?” which is EXACTLY what I needed to hear at that moment.

    My kind and generous next door neighbors who offered to spend time with the kids every few weeks so that if there’s an emergency they will feel comfortable with them. We hadn’t gotten around to arranging those visits yet, and look what happened! We will fast track that plan now.

    My sister, who listened to probably waaaaay too much confusing medical stuff, when I was confused myself and also losing my words (medical brain fog), she is my best listener. A service that cannot be over valued.

    The meal service delivery guy who quietly said “I’m praying for you” every time he put my tray down. 

    My brother-in-law who just glides in and cares for the kids without ever a complaint or even a sigh. He’s our last minute guy, and always always happy to help. Also, very dapper. 

    My deeply kind co-worker who takes on everything I send her when I’m dealing with this stuff, and best of all, she JUST DOES IT WITH NO QUESTIONS. 
     
    My “It’s such a small-world” friend and neighbor who delivered yet another treat bag of PERFECTION. Only another harried mom would know to include juice boxes.

    The Coven! (Can we let the name be known?). I’m tearing up right now. You made and delivered an entire white trash Thanksgiving meal, WITH FLOWERS AND NAPKINS (fancy white trash). Who knew my some of my closest friends were at school board meetings?

    The doctor who didn’t laugh when I REQUESTED a Foley catheter. Don’t judge. Peeing in bed when you’re  hooked up to an IV and have a vaginal birth + menopausal bladder is goddamn heaven. They should make home versions.

    And Stevie. Shhh, don’t tell anyone Stevie but I missed you the most.

  • Hospital Saga, Part 3

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    Diagnosis (sort of)

    So, I was admitted for hypoxia and suspected congestive heart failure. My oxygen level was low and that troponin level (heart damage indicator) was high. On the second night I had an “attack” of pericarditis, an excruciating and frightening episode of extreme chills and intense chest pain, caused by inflammation of the sack around the heart. Enter the “Rapid Response Team”. Exit Paulie’s composure. 

    For the next five days they lowered my blood pressure, raised my blood pressure, increased my oxygen, decreased my oxygen, raised my heart rate, slowed my heart rate, dehydrated me, rehydrated me….felt like I was a set of human Etch a Sketch knobs. This way, no that way, up no down. And let’s wake her up every hour and poke her tiny veins just for fun.

    On day four, they did a cardiac Stress Test. This is usually done on a treadmill. For patients like me, who can’t do that and are hooked up to a bunch of IVs, they do a chemically induced stress test. In other words they hook you up to a bunch of wires, tell you to wiggle your feet and then GIVE YOU A FUCKING HEART ATTACK.

    Worst. Experience. Ever. I’ve had chemo, radiation burns and torn during childbirth. No comparison.

    After I recovered from that, and was breathing without oxygen for two consecutive days, I could be discharged. It took a day longer than we hoped because no one was available to do the cardiac CT over the weekend. The Stress Test, Echocardiogram and Cardiac CT showed that my heart has no blockages or other traditional causes of heart failure. Good. My ejection fraction was down from my normal rate, so my heart was weak. Chest xrays continued to show fluid on my lungs, because my heart wasn’t pumping at full strength. Not so good.

    So what happened?

    The consensus is that the oral chemo Lapatinib is the most likely culprit. Her2NEU chemo agents are known for this issue, thus the frequent baseline Echocardiograms I’ve had every six months through my treatment.

    So, they’ve added four more medications to the mix. I wore a heart monitor device for three days to collect data on my rhythm (I was tachycardic occasionally). I have a cardiac MRI next week, more blood work and the usual round of appointments. Lucky for me, my care system has a cardiologist specializing in chemo related heart issues. He’s 12, but I trust him. He and my oncologist will consult and decide what to do next. In the meantime, I’m going slow, conscious of every breath and I hate stairs.

    Speaking of heart stopping moments, I already got a “We reject your hospital stay claim because your doctor has not sent proof it was medically necessary” insurance letter. Bwaaaaaaahaaaaa, ok.

  • Hospital Saga, Part 2

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    Within minutes at Urgent Care, we realized it wasn’t urgenty enough, so we zipped down the road to the Emergency Room.

    The secret to fast service? Chest pains and a Smurf-like complexion.

    My oxygen level was 76, my chest had a tire on it, the portable chest X-ray showed my lungs were full of fluid. The moment the nurse flung back the curtain and said “Yep, you’re getting admitted”, I relaxed, gave in to the situation and absolutely luxuriated in the oxygen.

    The days that followed were a mess of medications, IVs, blood thinners, heart monitors, scans, machines, a lot of 3M products, and many many faces behind medical masks. I had to tell the story of my symptoms and answer how are you feeling so often that I currently cringe when anyone, very well meaningly, asks how I am. 

    Triponin is a protein the heart excretes when it’s damaged. A normal level is zero. At admission, mine was 6.  Three of the days in the hospital were just waiting for that to go down. It did, and was almost normal by discharge.

    I’m still absorbing everything that happened. I’m honestly confused and a bit traumatized. It’s a struggle to find any humor in this part of the hospital saga, so this post is rather unsatisfying. But, my situation is also unsatisfying, at least until I get new plans from my doctors.

    And also a do-over for Thanksgiving with my family.

  • Hospital Saga, Part 1

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    It started Saturday, I assume as a virus. Chills, fever, and an intense headache. Covid test negative. Then a strange stiff neck, like a vise. More fevers and chills, still Covid negative.

    Feeling a bit better on Sunday, ok this is just a cold or flu. Terrible body aches, but no cough and no congestion, the fever broke. Monday I stayed home to rest and in case I was contagious. Another Covid test negative. 

    By Tuesday I was short of breath. But that’s a side effect I’m used to, so it was manageable. Until it wasn’t. Tuesday night I slept sitting up, increasingly alarmed at how ashen I looked and how my chest was tight. I messaged my nurse navigator.

    Wednesday morning, Paulie took the kids to school and then headed to an ENT specialist doctors appointment for which he’d been waiting many weeks. I labored to breathe and knew when I saw my nurse flash on my phone what she was calling to say–“You have to go to the ER, I’m worried about a blood clot.”

    Ok, scramble to send a few messages, get Paulie on the line. We decide, I DON’T KNOW WHY, that he should complete his appointment and then come take me to Urgent Care.

    At this point, my face is grey and my lips look like two dead alewives. I’m crawling on the floor so I don’t fall or pass out in the house alone. It takes me an hour to put on pants. And by pants, I mean underwear.

    Meanwhile: 

     

    General:
    Patient is a pleasant well developed male in no distress.
    Patient is able to communicate without any problems.
    Voice is normal.
    Affect is normal and patient is alert.
    Head appears normocephalic and without evidence of trauma.
    Facial strength appears adequate.
     
    Ears:
    External auditory canal shows significant, severe bilateral cerumen impactions which extend all the way down to the eardrum on both sides. These appear to have been pushed in some how. These are carefully and meticulously removed under direct visualization using a combination of instruments including otoscope and suction. This requires moderate to severe effort of about 10 minutes. Patient tolerated this procedure very well and there are no complications. After removal he notes improvement in his hearing in both ears.
     
     
    EAR WAX. They removed his compacted EAR WAX.
     

  • All The Screaming In My Head

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    "You can beat this."

        No, I can’t. Nothing I do will change how the cancer acts or how I respond to the treatment. 

    "You're so strong."

        No, I'm not. I'm just silent. If I gave voice to what I really feel, I'd physically and mentally crumble and I can't afford that. It's not strength, it's just lack of a safe space to be as weak as I actually am. 

    Related: "You'll keep fighting."

        What? What is fighting? I do the treatment, I suffer and I wait. There is no fighting. Nothing I do or don't do has any effect on the cancer. It's all just suffering. And at some point, there will come a time when I can't "fight". What then, am I a loser? There may come a time when I refuse more treatment. For the love of god, when I quit "fighting" respect me. Every day, someone in one of my support groups dies. They "fought" the same as me. Cancer doesn't fucking care.

    "You have so much to live for."

        NO FUCKING SHIT. We all do. I'm 100% aware of how much I love my children and how much they need a mother. That love has zero effect on my ability to be cured of cancer or how much I can tolerate the suffering of treatment. This is the cruelest "well meaning" thing people say to me. It's also sexist. I wonder how many sick fathers get this same platitude. Also, I WANT TO LIVE FOR MYSELF. Big secret—kids are not the first thing a critically ill person may think of. It may be, as it is for me, themselves. I want to live not for my kids, not because of my kids, but for ME to enjoy my kids. But first, I want to live for myself, as a whole person separate from being a parent. I am more than a vessel for my children. 

    "It could be worse."

        Could it? What flavor of dying is better? Yes, there are versions of my cancer, of all illnesses, that are "worse" or where treatment is more debilitating. But it's all dying. It's all suffering. It's all terrifying.

    "At least they caught it now."

        Yes, catching it now is so much better they say. Better than what? I would rather not know. Because knowing now is still only knowing the risk, the ax over my head, the doom. Not knowing was freedom. And no one knows, or at least they won't tell me, if finding the spread now truly improves my outlook. Because all we really learned is that it's still lurking, and the scans can't see it. So, it just confirmed that I'm a walking game of pop-goes-the-weasel. It's gonna get me, and I have no idea when or where. 

    Today my therapist advised sitting with the emotions, all of them, that are here and that will come. She also approved all the ice cream.