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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  • Yes Really

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    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

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    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

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    “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

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    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

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    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

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    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

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    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

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    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

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    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

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    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?”