onion skins and playlists

 

hugowhat - 1.jpg

I laid the travel Thai yoga massage mat out in the study and now Hugo doesn’t want to leave. I can’t really blame him. 

 

We’ve had a really wonderful summer so far this year; plenty of rain, with lots of bright, clear days and the cool, crisp New England evenings I remember from my childhood. Good for evening bonfires, great running and hiking weather. I’ve been taking long country drives, collecting plants for dye work and soaking it all in. “I’d love to hang out, but later- I’ve got to go out and collect wildflowers for work,” is now something I’ve said more than once to friends, which tickles me to no end.

I’ve been spending the last week all up and down my end of the state, talking to friends who own businesses about getting bits and pieces of their discarded food/ veg matter for class this fall. The vineyard a few towns over is going to donate red wine pomace for the kids to use in natural dyeing, and the co-op is looking through their “naughty” veg piles as well- and setting aside onion skins for us, because can you ever have too many onion skins? NOT IN MY WORLD, children. (Em, if you’re reading this, I’m coming for you, too.) I have a fabric shop working with us, and it’s all really just coming together in this wonderful way. I wanted to help highlight small local businesses, as well as keep costs down (I’m here for the tiny brains, not to get rich, clearly), but I wasn’t sure how it would go, given how new we are here. I’m really excited about how well this is shaping up.

Our freezer is gradually filling with freezer bags of flowers and leaves- we never really keep food there, it’s basically an ice- cream-only zone, so it’s not an inconvenience, but as I realize that the season is coming to a close I begin to consider a larger freezer or renting space in friends’ homes. Is this the sign of a problem? Do they make tiny beer-fridge sized freezers that I could keep in my wee studio? Hrm.

This process has been such a sweet and meditative distraction through the stress and hurry of the last few weeks; very thoughtful, so much lovely chemistry, and great gobs of time spent in my car driving through the countryside. I make a lot of jokes about how different our lives are here, but there’s something magical to this place, and I can always head outdoors here to feel better. I’ve needed that a fair bit in the last few weeks.

I’ve been talking about it a bit here and there, but last month I did some genetic testing and came up positive for a BRCA 2 mutation. It isn’t a huge surprise given my family history, but I needed a moment to sit with it, regardless.

I didn’t inherit much from my mother, for which I am grateful; we have what could only be called a challenging relationship if the little which lies between us could be termed a relationship at all. One needs to relate to another person to have a relationship, and it’s been over twenty years now since we’ve had any real engagement with one another. It’s all right: I think we are both better this way; we could never seem to stop doing one another harm. Daily reminders would be painful, though, and I am relieved to have dodged that bullet; as far as I can tell, the only significant things I seem to have inherited from my biological mother appear to be my voice, some auto-immune issues, and the BRCA mutation.

I didn’t know to look for BRCA issues until recently, although I suspected it might be something I might need to look into sooner or later- my grandmother had breast cancer, and her mother, my great- grandmother, had had issues as well. I grew up with the image of cancer as our family boogeyman; my mother’s mother, Barbara, seemed endlessly ill before dying young of what appeared- when I was a kid- like her millionth bout with cancer, and my mother drilled home that I would need regular checkups, possibly more than other women, due to our family history.

I spent childhood summers with my grandmother, Barbara (and my grandfather, Paul), at their home in Florida every summer until I was about 10 or so, which sounds idyllic but was actually a lot of wildly different things: a relief from my mother’s uncomfortable, creatively abusive home; a glimpse into how godawful my mother’s childhood might have been (being abused by your abuser’s abuser is, truly, an eye-opener); long hot summer afternoons on my sparkly magenta bicycle; the smell of hard liquor at mid-day; evenings spent collecting locusts and geckos; and Hank Williams, Johnny Cash, and Loretta Lynn on the stereo, real low, always. My memories from that time are fragmented, scarce, but incredibly vivid where they exist.

I remember waiting for Barbara to get ready- not for anything in particular, just waiting as she dressed, put on her makeup, did her hair. My mother wasn’t that sort of woman- as a kid, I always got the impression that she believed makeup was for “lesser” women, although now I think she might have just been uncomfortable with it. Kiddo used to observe me getting ready for my day or an event in this way when she was little, too: watching my habits, learning, waiting to craft her own rituals.

Barbara had undergone mastectomy without reconstruction- this was in the 1980s, so I don’t even know what the options were (and I sort of doubt insurance would have covered it, regardless). She would hang her breast form in a silky pouch off the doorknob leading to her master bath while she showered. Between the very existence of a “master bath” and the silkiness of the bag she used, I found everything about this arrangement extraordinarily super-fancy-lady and would sneak the bag off the door so I could play with both it and the prosthetics inside.

These memories, they’re both nostalgic and horrible; I recall being completely fascinated by the alterations in my grandmother’s body (her altered chest, her later colostomy) in a completely blase way. This was just life, with Barbara, as she lived it.

I meet with surgeons in a few weeks; it’s The Thing As It Is Done, but I’ve got complicated feelings to work out beforehand. We are one year, one month past my mother-in-law, Lorene’s death from stage IV colon cancer, and that’s weighing pretty goddamned heavily through all this, even as I’m trying to make my own decisions. Separating what I- what all three of us- were feeling and thinking 13 months ago (two years ago, four years ago, five and a half years ago, what seems like this all-encompassing, horribly failed hope) is incredibly difficult. There isn’t anything we wouldn’t have done, before or during, to prevent her very bad death.

It’s taken me years to love my body, to greet it with joy and affection. MS brought me to that point, but MS also made that really hard. Well, being in a female-coded body in this society made it hard, really, but that’s a different post for a different day- my point is, I’ve invested a lot of energy and work into loving the life out of this disabled body, and while I’d give my ovaries away on a street corner (ovarian cancer is really hard to detect and will kill you stone dead in a minute, friends) I’m apparently far more attached to my breasts than I thought- other than in the typical and obvious ways, I mean. Who knew? While I’ve always identified as a woman, I’ve jumped all over the place as to how femme I’ve presented. I keep coming back to very core concepts, though; I nursed. I hug my chest when I’m sad, or scared, or even just tired. Being able to run down stairs (or at all) bra-free might be rad, but I’m just not feeling it. I don’t know. A mastectomy feels like the mutilation of healthy tissue, and while I know that isn’t necessarily the case, I’m very unsure of it.

I’m also not really feeling implants, and I’m about 100% certain I don’t have the body fat for any other reconstruction, although I’ll know for sure soon. At a BMI of 17.8- understanding that BMI is bullshit, obvs- I’m still pretty meh here, though. Thanks for the killer metabolism, Dad! I genuinely love it, except basically this one time. 🙂

I’ve created a playlist because I’m a child of the 1990s and that’s how I deal with all of my feelings. It’s still being refined, but I’ll put it up for August: sharing is caring, babies. It doesn’t make any sense whatsoever, like all the best playlists, and includes Beth Ditto, Wu-Tang, Elliott Smith, Gillian Welch, Meshell Ndegeocello. (Sound like your thing? Are you on Spotify? I can share it with you there, too.)

I’ve had several folks ask me how to get through rough stuff lately, which I find both funny as hell and seriously touching; thanks, you guys, for thinking I might know what I’m doing, honestly. I don’t, but I have wicked good book recommendations. Pema Chodron’s Comfortable With Uncertainty and The Places That Scare You keep me upright when things get tight and tough. Want to add a suggestion? I’d love to hear what you read/ do/ watch when it feels like it’s a bit much. We are still waiting on Kiddo’s testing, and until we hear more on that I for sure could use a couple more ideas.

 

 

  One thought on “onion skins and playlists

  1. Gail Rector
    July 31, 2017 at 1:59 pm

    Why I Jump
    and
    Fall Down 7 Times, Get Up 8
    Both by:
    Naoki Higashida

    • August 1, 2017 at 8:46 am

      ❤️❤️❤️ Thank you! Added to my queue!

  2. July 31, 2017 at 8:04 pm

    Oh Honey,
    Your story has so many parallels…
    Too many…
    As a result, I can imagine what you are going through. I bless that you are articulate, and clear-headed enough, to isolate the issues that surround this.
    There are no guarantees, even with surgery. So, even if you do, be aware you still need to maintain vigilance.
    A friend of mine recently just scraped through on the right side of life after a battle with peritoneal cancer (linked, in her case, to her BRACA mutation), in SPITE of radical surgery. In fact, her surgery had made her a little complacent and she nearly didn’t make it. (She blogged her journey from discovery of status, surgery and then cancer if you want to read her story http://squawkingalah.com.au/should-i-chop-my-tits-off/)
    Not all cancers are created equal either. My own recent breast-cancer sat very low on the reproductivity scale so, lumpectomy and 6 weeks of radiotherapy was all I required.
    I’m not really saying anything useful here.
    But your post moved me deeply and I wish you all the very best.
    Cheers
    Karin (AKA The Knitting Man Recommends… IG)
    P.S. Yes, you can get bar-fridge-sized freezers.

    • August 1, 2017 at 8:51 am

      Ha! I KNEW I couldn’t be the only person who needed a teeny tiny freezer! Thanks for that!

      And see, that’s where I get so stuck- the medical is so confusing. There’s evidence that mammograms aren’t as effective as they are proported to be, which is the scary thing about NOT having a mastectomy, but then there are the associated cancers. My great grandmother had peritoneal cancer too and damn, that’s just horrible. Regardless, it’s definitely going to mean adding more… the only word I have is “medicalization” to my life, which is already tough. It’s fine, but I’m already kind of used to that life. I could really see how that would be very very difficult to adjust to for so many people.

  3. Sheila Richardson
    August 2, 2017 at 5:25 pm

    Hi Sara,, sorry about your bad news. I am four years out from breast cancer – the good kind, estrogen and progesteone receptor positive. Mastectomy and five years of estrogen suppressor are my only therapy. My cancer was caught on mammogram (which I have had annually since I was 25). Well, one of them. I had a non-invasive DICS, and a surprise on MRI: a second cancer that was already invasive in the same breast. Both were so small that they were completely removed in biopsy…no cancer was found in the removed breast. I had a reconstruction (I am/was a 38DDD) and a lift on the uninvolved right breast which left me with a sexually numb and painful to the touch breast. The pain, which really wasn’t so bad, has gradually faded to numb. The mastectomy was never painful…the only distressing part was the drains. They made me feel sick. I was so much better when they were out about day 8 (?) and went back to my full time job at three weeks. I am BRCA negative; my sister had breast cancer at age 35, I was 56. The sporadic nature of breast cancer makes it a puzzle to decide the best course. I didn’t feel any remorse at having my left breast removed…once I knew about the second, invasive cancer. I was thinking lumpectomy with the first DCIS, but that was not to be. I do regret the lift, because of the numbness. But I’m alive. I have annual mammograms and have had two repeat unnecessary MRIs because my doctor is a frigging sweetheart who understands that the “bad” cancer was only found on the MRI. I sympathise, and empathize with you, as you make your decision. I can tell you that sex is different without breasts, and I do miss that. I don’t know how I would make your decision. I have children and I as the sole support,of our family, so I need to work and be healthy. If you are taking votes, I would have the surgery.

    • September 16, 2017 at 1:16 pm

      You know, I’m getting advice from absolutely EVERYONE these days, but I’m interested in hearing from people who have had these procedures (for BRCA or cancer related reasons or not) most of all. Or maybe at all, period? What I mean to say is thank you, though. I want to hear anything you have to say, a LOT, and I’m really grateful for anything you have to share.

  4. August 2, 2017 at 7:35 pm

    Yes, you will have to add “medicalisation” more.
    You mention that mammograms don’t always detect. True.
    They can cause cancer too!
    One fact with their not working is the quality and quantity of breast tissue (a very interesting area in itself… dense breast tissue now being linked to chronic inflammation… immune system…MS???).
    It’s a minefield of possibilities, probabilities, stabs in the dark and frequent whoops!
    It made me so cross.
    Some breast cancers abut the chest wall…
    I hope Tracy’s blog was of some interest to you.
    Good luck.
    Keep informed. Second, third opinions and ask questions. I’m sure you know all this crap.
    And that get that bar-freezer….
    Cheers
    Karin

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