girl at large

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

recent posts

about

  • At The Speed of Cell Division

    8DC1D41D-5D7D-42E8-AA4E-ECB0692F8E4E

    Well, that was fast. 

    I had a clear PET scan on August 24th, just a day before my prophylactic hysterectomy surgery. A week after surgery, when meeting to review my medication switch, my oncologist reviewed the scan results and used the word “remission”. It was the first time I felt truly hopeful and relaxed. I even asked awkward Dr Puffer for a hug and he obliged with a smile. I’m not a hugger, he’s not a smiler. It was a great day.
     
    Paulie said, and thus cursed us, as we drove down the familiar hospital drive, “Well,we won’t have to be back here for a long time!”
    The total hysterectomy surgery had gone well, no complications and manageable pain. In my mind it was the last step, the last hurdle, in my treatment. I had decided some time ago that I wanted to have all potential cancer bags removed at some point, but the Lynch Syndrome genetic diagnosis made that an imperative. Lynch Syndrome raises my risk of uterine cancer by 60%. Medication (Tamoxifen) can suppress estrogen, which fueled my cancer, but ovary removal and a different medication (Aremidex) is even better. So, bye bye cancer bags. 

    The past three weeks since surgery I’ve been resting and adjusting to the new anti-estrogen medication (called AIs or aromatase inhibitors). Basically, life without hormones. Not a huge sacrifice, and I felt fortunate to have the option. Feeling pretty good, like I crossed a finish line.
     
    So…about that other shoe.
     
    On Monday, the test results from the hysterectomy pathology came back. There were breast cancer cells in my ovaries. 
     
    That means the cancer spread beyond the “region” and did not have a complete response to the Chemolite™️. Though it’s not back to square one, it’s a set back, and completely unexpected. This is quite a rare occurrence. In Dr Puffer’s words “I couldn’t believe what I was seeing on the screen. I really don’t know what to say.”
     
    And I don’t know what to feel. I was so excited and free, I didn’t even write that celebration blog yet. 
    I’ve said before that the first thing cancer does is take over your schedule. So, I’m in a familiar place again, the hospital and lots of tests. Yesterday an ECHO to test my heart again, and more blood work. Next week is a brain MRI and a bone density scan. All in preparation for beginning an oral chemo regime (Lapatinib). It’s not as rough as full on IV chemo and hopefully I tolerate it as well as I did the Chemolite™️.
     
    It may not be as rough but it sure feels like a major blow.

  • Life and Photosynthesis

    8D292D46-4635-4625-B1EA-0EA1A962D6C5

    Mom: “I finally figured it out! I finally realized why you got so into plants!”

    Me, and all my house plants around me in the corners, listening.

    Mom, enthusiastically: ”You were desperate to keep SOMETHING alive!”

    .
    .

    .

    Me: “You mean I was interested in being surrounded by living things?”

    Mom: “Oh, yes, that does sound better.”

  • Using Your Words

    0D578EF2-9BE1-44BC-8A37-E868446677C7

    I think a lot about Charlie going from age 3, still potty training, to age 6, starting first grade, during The Pandemic. And The Cancer. It’s been tough on the little guy. On all of us.

    He can be demanding, he talks constantly (and I mean CONSTANTLY), and he’s stubborn. And he hates change. And he’s inflexible. He’s also incredibly quick minded and loves a debate. Did I mention he’s stubborn? I have had many days when I was at the bottom of my parenting skills for this style of child. 

    But lately, I’ve had break through moments. Not him, he’s the same Charlie. But I’ve had a few aha parenting moments. I managed to listen at just the right time and the little bugger said some profound things. Things like “Thank you Mama for talking to me like that, I like it when we have these big talks.”

    Noted kiddo, noted. More one-on-one talks, got it. I’ll do more big talking, you do less discussion of “Mama’s diddly do” at school…deal?

     

  • Renovations and Revisions

    0F1F9959-D763-429F-94D1-924F839EE1F5

    I had my chest revision surgery on Thursday. Some women are built so that the initial mastectomy surgery, if they go Flat, leaves a pleasing flat and smooth chest. Others, usually those built like me, are left with a moonscape of craters and lumps. Needing second surgery, usually a day surgery and relatively minor, isn’t unusual.

    I had, as my child described it, “two little matzo balls” in the middle of my chest. The extra skin where the stitches came together under my arms left me with annoying flesh pillow corners, called dog ears. The center nubbins were always sore, and the difference between contours of the radiated and non radiated sides was very noticeable. The non cancer side had what we named “the crumb catcher”, an odd fold of skin by my rib cage.

    I’ve been very content to have chosen AFC (Aesthetic Flat Closure). Fewer surgeries, less risk of infection, no foreign objects in my body. And after a lifetime of backaches and blouses that wouldn’t button, I feel lighter and sleeker. But the final results needed some work.

    I’m very sore, and bruised like I was in a car wreck, but this is the first procedure that was completely  my choice and solely to make me feel better.  I had to wait a year after radiation to get the revision surgery done, so it was a very happy day.

    Also a long time coming is the upstairs renovation—dividing the large bungalow train cars of oddly shaped rooms into proper bedrooms and putting in four—-FOUR—-closets (!). One wall came down, two more went up, and the oddball cupboards and arches got filled in. We salvaged four of our original solid wood doors; after stripping and painting they look amazing. (How is it possible we still have five more unused doors in the basement?). We started the project a few weeks ago, the painters are almost done, it should all be wrapped up soon. 

    So, I’m sitting up recuperating in my comfy bed, hoping the skin under my bandages is smooth and pretty, enjoying the new pocket doors and cheerfully painted walls.

    OMG I just realized the paint color I picked is nipple pink. 

  • Abortion Made Me A Good Mother

    D727D72E-3B12-4F79-883F-729D1F9EFCE8

    I’ve written and rewritten todays post, alternating between feeling bold and feeling uncomfortable. Here goes bold:

    Abortion made me a good mother. When I was 17, my birth control failed. I knew immediately that abortion was my choice. I knew I was supposed to feel bad about it, and I did some performative dramatics about it, but truly all I actually felt was deep relief. And a little embarrassment.. I WAS careful, I did know how to prevent it, I thought I did everything right. It still happened.

    But what didn’t happen, thanks to a legal abortion clinic in my state, and a wonderful doctor and nurse team who cared for me with respect and kindness, was the implosion of my life. Or my boyfriends life. He went to college, I went and did my thing. We avoided poverty, disrupted education, coerced marriage and a handful of other negative things. Also we didn’t have a child. Because we didn’t want one. And that was my right. My choice, and the absolute right choice for me.

    Ten years later, it was the right choice again. Again, I was careful, and it happened anyway. This time was harder, I was older and “should” have been ready, but my boyfriend was not supportive, and I was broke, drinking a lot, and suffering with depression. I felt a little bit worse than the first time, but mostly because I loved a guy who didn’t love me back the same. I knew, again with relief, that I made the right choice. I couldn’t parent then, and not with him.

    Another ten years after that, I have a wanted pregnancy that ends in a miscarriage almost immediately. Then, quickly after that, a successful pregnancy and my family begins. The family I knew I could support, knew my body and mind could handle. The family I could never have had if I was a teenage mom or an unstable parent. 

    Why do I even need to explain or defend myself? Self determination, the ability to decide if and when to reproduce, was fundamental to my life, to my growth and ability to be a contributing, stable person in this world. It was my body, my life, my health, my path to choose.

    That has been taken from us, taken from our kids. I thought it couldn’t happen, but here we are. I don’t know the path ahead, how we restore our full rights. I know that I am grateful for the people who fought before me, and I am indebted to them, for the realization of my full potential, and for my beautiful family. 

  • Family Project

    CA6FEC5C-838D-4E98-AB8F-92E680B30BEE

    It’s the most embarrassing time of the year.

    The windows are open and

    Mama is hopin’ that no one can heeeear!

    The family is yelling, the neighbors are selling

    To get out of heeeeeere! 

    It’s the most embarrassing time of the year!

    There’ll be voices to lower,

    Unless there’s a mower!

    Siblings are out of control

    Soon the whole block will know

    It’s the most embarrassing time of the year!

     

     

     

     

  • This Again

    E14B3CB3-AA36-45A0-A654-2C3BD048E6ED

    Me: I’m exhausted. I sleep all day and am still exhausted.
    Radiation Oncologist: Fatigue is normal after treatment.

    Me: I forget things, I can’t focus, I feel like a constant failure at work, I’m easily overwhelmed.
    Therapist: Try making lists.

    Me: My nails are still brittle and cracking down to the quick. 
    Nurse: Oh nails are the worst, they take the longest to go back to normal after chemo.

    Me: My joints ache so much and I feel weak. 
    Physical Therapist: Do your exercises!

    Me: My tongue is gross. 
    No one: nothing, because I didn’t tell anyone about that, ick.

    Me: I’ve gained ten pounds really fast. 
    Oncologist: So good to have your appetite back!

    My period: Vanishes, then stays for twenty days.
    OB/GYN: Let’s do a transvaginal ultrasound and then a hysteroscopy!

    Me: I am more depressed than before.
    Psychiatrist: Let’s try adding a new med.

    Me: I’m cold all the time, I can’t get warm. 
    Husband: I turned up the heat. 

    Me: Maybe we can just double check and do a thyroid test?
    My thyroid: IT’S ABOUT FUCKING TIME

     

    *I have radiation-induced hypothyroidism. The radiation field for breast cancer can often get close to the thyroid gland and cause this problem. My radiation treatment was even higher up the neck and literally aimed directly at the damn thing, so who knows why I wasn’t screened more proactively…Anyway, it’s a relief to know. I started medication tonight, see you in 4-6 weeks, I’m going to bed. Also, it took awhile to get the blood test because I WAS TOO TIRED TO GO.

  • No Harmony Yet

    53E3909B-6B76-4560-8A40-2DC2053E3E32

    Start painting again they said, it will be good for you they said. It will help your anxiety my therapist said.

    So far my accomplishments include spending the kids college funds on supplies, hiding off camera during video classes and defending my water bowl from Stevie the cat.

    A few sketches and paintings have worked out as intended, but, in the way paintings can do, a few images have turned against me. This little house in New Harmony, Indiana for example…I’ve been up nights trying to get the damn thing right. A happy little travel study has morphed into a frustrating test of my patience. 

    Like the end of active cancer treatment, when I “should” feel healed and happy, it’s a work in progress.

  • Late Stage Romance

    F0A87A5B-1927-450B-9D2D-48301F6ADB71

    “Sorry honey, I had a big cabbage slaw salad yesterday.”

    “That’s ok, I just dropped a huge bomb in the bathroom”

    Happy 10th anniversary my love. 

  • Wanna Try That Again?

    A0492E7B-0828-4C04-9BAD-9A6377D9010A

    I’m helping Mom complete an online health questionnaire, an important one for an upcoming appointment. It’s long, it covers a lot, and it’s challenging to do even without vision loss. I’m reading from the screen…

    Me: “Ok, Mom here are the social support questions. Answer either True, Mostly True, Somewhat True, False, Mostly False, or Somewhat False—‘I have someone I trust to help solve my problems.”

    Mom: “False”

    Me: “Really, are you sure about that?”

    Mom: “Totally, I don’t trust anyone to solve my problems”

    Me: “No one? You have no one to help with your problems?”

    Mom: “Not that I can think of”

    Me, laugh yelling: “MOM I’M LITERALLY RIGHT HERE HELPING SOLVE YOUR PROBLEM!”

    My favorite part was Paulie snorting from the other room.