keeping abreast | keeping a breast

i recently read an article written by a parent whose child was killed in Sandyhook. in it, she said something so profound: “somewhere on the continuum between overwhelmed and overcoming—that is where a griever lives at all times.” 

today marks 5 years since i was diagnosed with breast cancer. in that universe of grief, i feel both like overwhelmed’s bottom might drop out and on the cusp of overcoming. time goes quickly, it goes slowly. it’s nuanced and complicated. it’s a giver and a robber. in my check up with my oncologist last week, we brushed over this. really anymore with many kinds of breast cancer, there isn’t a magical clock that starts ticking, as the medical community is starting to see distant recurrences, 7, 10, 20 years after an initial diagnosis. and with my more recent diagnosis on my left breast, i’m unsure where to even begin. it seems one is never out of the clear. we’re all chasing life, or running from death. as i’ve said before, it feels both gravitational and refreshing to have a better sense of how i might die. but as i’ve also said, i’d be really sad to die.

i think it’s important to mark the passage of time, with ritual, with myself, mike, my family and friends. those rituals are symbols of the deep work we’re all doing all the time on showing up as a human being. i just finished a book called Tribe by a war correspondent who is trying to understand PTSD and why we’re spiraling into unhappiness writ large. he had an experience with a Native American Tribe that was around grief and reintegration of warriors into the whole community. of the experience, he said, “America is a largely de-ritualized society…but the spirit of community healing and empowerment that forms the basis of these ceremonies is certainly one that might be converted to a secular modern society.” he went on to say that “Humans don’t mind hardship, in fact they thrive on it.” Because it gives purpose, builds community, finds commonality in our shared human experience, reminds us that underneath the labels we give ourselves and each other we’re all the same. 

anyway, i’m not sure what i’m trying to say here. i have gone back through past blog posts recently and partly am in disbelief that any of this happened, and that i’ve share so many personal details with you. i let you in and you joined me. i discovered ritual in writing and listening to what you had to say. i found community in the universe of grief with you, because you’re all bearing a cross too. 

i will never say i’m grateful for cancer, that asshole motherfucker. but i will say i’m grateful for some things that came in spite of cancer. thank you for hanging out in the continuum with me.

xom

you may have heard of the centuries-old japanese art of pottery repair, kintsugi. if a piece of pottery cracks, the craftsmen repairs it with gold, highlighting the fractures and seams. it produces these curiously stunning, imperfectly perfect objects. 

today, i cracked. it wasn’t just at the seams though. it was into a million shards.

i’ve been having headaches off and on for the past month. they can’t be explained away. not allergies, sinus infections, changes in barometric pressure, or altitude. they started before i was flying a lot. my stress level hasn’t changed markedly. everything is as it was. i spoke with my oncologist, and ever the cautious one, she said, “let’s scan you. then we’ll know. and wouldn’t you like to know?” yes. yes, i would.

the obligatory 5-day-waiting-period for insurance passed and, with some pleading on my end, the scheduler got me in as soon as she could. i popped some anti-anxiety meds and met mike at the imaging center where i would get the brain MRI. i didn’t think much about it, didn’t want to think much about it, and only told a handful of people. 

then, the IV was a little challenging to get it. not unusual, but not pleasant either. it dusted up some painful memories of all my blown veins.

i came into the MRI room after getting a metal detector passed over my body. the tech started going through a checklist of questions, mostly about metal. she got to the final one–“any chance you could be pregnant?” i joked that being in menopause kind of puts a stop to that possibility. she confided in me that she is a 14-year-survivor and being in menopause is the pits, her skin without estrogen is so thin and saggy that she looks older than her mom. i felt a little flushed and frustrated that my need to please superseded taking care of myself.

all suited up, in my hospital pajamas and sticky-bottomed socks, i laid down on my back, where the tech got me tucked in, with pads all around my head and earplugs too. she put the cage over my face and started to crank me into the tube. my eyes flew open and the ceiling was about 3 inches above me. and then, i couldn’t breathe. i. just. couldn’t. breathe. 

i squeezed the ball she left in my hand to communicate emergencies, and she came back quickly to crank me out of the machine. uncaged and unstrapped now, convulsing and crying, i could starting heaving big breaths again. confused, my mind asked, what the fuck is happening to me? this was fully unfamiliar territory. i’m an A student. i finish what i start. i have grit. i’ve been through much worse. i know how to busy my mind. i can thrive in small spaces. 

she convinced me to get off the table and talk to mike in the waiting room. he gave me his best pep talk. he came up with ideas for how to spend 45 minutes in my mind in a tube, like to envision our house remodel step by step. he said i could do it. 

not wanting to let us all down, i went back into the tube. this time, the tech put a washcloth over my eyes. and 15 seconds later, it all started over again. snotting, crying, hyperventilating. i needed out of that tiny tube and that damn head cage. no more. not today. maybe not ever. 

while the techs tried to make me feel better (“you’re not the first and you won’t be the last.” “you’d be surprised at how many people, grown men included, that this happens to.” “sure we could get an image in a bigger MRI machine but it’s not as clear and your oncologist wants this one.”) (ok, that last one was a little bit of a guilt trip), i felt worse and worse. 

we came home, and i crawled into bed. i talked with my doctor and she wants me to reschedule for another machine that is a few inches bigger and has music options. still has the head cage though. small upgrades, i guess. 

maybe tomorrow i will be kintsugi, but today, i am cracked.

xo

m

it’s been windy in the bay area this week. and i don’t mean a gentle breeze. it’s more of a blow-you-over freight train. as we’re in the middle of a renovation, the plastic covering our mostly-roofless house whips around, waking me up and causing my heart to beat faster as i wonder what pieces of the house are still standing. this wind is kicking up everything too. bits of trash are rolling down the sidewalk like tumbleweeds, branches are snapping in half, and, well, my stamina is also getting a lashing.

pema chodron, someone whose voice helped get me through chemo, has this saying, “you are the sky, not the weather.” 

but with the state of the world, and, well, life, i feel like the weather.

when the bandages came off after my last surgery, there was an audible, “oh” from the surgical team. it turns out that symmetry and surgical success is never guaranteed. and, i’m lopsided now, so much so that it’s noticeable in clothes. weren’t symmetrical breasts the *one* perk of my cancer bullshit? so that i can wear a v-neck shirt or backless dress without people trying to figure out what is happening with my mangled chest? and wasn’t this supposed to be my last surgery, to put it all behind me?

i’m embarrassed that i didn’t entertain this as a possible outcome. i’m frustrated that my surgeon didn’t mention it. i’m annoyed that cancer has left me deformed. and i’m in the stratosphere in realizing that to try and fix it would require yet another surgery. 

i feel conflicted about another procedure that has no guarantees. and, i probably feel a bit judged too. like, why is she worrying so much about fitting into clothes when she should be grateful to be alive? i’ve thought long and hard on this. it’s my body, the one i gratefully inhabit. that i see every day when i get dressed, or get out of the shower. that others see when i change at the gym. i know i’ll never go back to the “before cancer” me, and i’m working on grieving that, but i’d like to get as close to physically possible as that version. 

so many aspects of a body change with cancer treatment though–name the body part or function, and believe me when i say it’s dramatically impacted. in her last book, glennon doyle melton said, when chronicling her eating disorder, that she seeks a reunion. “there had been a civil war, and my body had ceded from our union. how can i bring it back? i want a truce. i want to be whole. i want to learn to live in this body, in this world, with my people.” 

that. that’s what i want. and world peace. and healthcare and reproductive choice. and relatively matching breasts.
i continue to deal with side effects of cancer treatment and these procedures too. on one hand, i’m so bored with that sentence, am so exhausted to talk about it with anyone. on the other hand, i know that there is a quality of life i can enjoy that is greater than my current state. i’ve been seeing a homeopathic doctor who guessed that my adrenal glands are shriveled up like little raisins. and being in menopause on top of that has kicked out another leg in the stool, leaving me flat on the floor. i hope we solve it and this fatigue and fog can blow away. and i can get some stamina back too, physically and emotionally. 

but, more doctors mean more bloodwork, which means more blown veins and bruises, a few pass-outs, and a new one for me–“milking the vein” to get the blood to flow. it is exactly as disgusting as it sounds. a lab messed up one set of bloodwork, and my primary care forgot to order several other tests, thus requiring two extra blood draws. in the meantime, i’ve been trying to fire that primary care doctor, but because i’m in the middle of a “health event,” (um, not sure when the other side of this so-called event will be?), i can’t change doctors to anyone outside of their medical group. the ball got rolling when the doctor cancelled my appointment when i was 5 minutes late on a rainy monday morning, despite my calling to let them know i was running late, arriving and paying the co-pay, and sitting in the waiting room.

it’s sometimes all just too much. 

but, you are the sky, not the weather.

at least that’s what i’m telling myself today.

be kind to one another,

m

it is both a blessing

and a curse

to feel everything

so very deeply.

-david jones

i’ve been quiet on the blog, ignoring my writing for the recent months. mostly because what i have going on feels small. it feels minuscule when the world seems to be crashing down around me, when people (my dear BAYS sisters) have metastatic cancer and are losing their health insurance and the life-saving treatments that come with it, when women (especially lower-income or Black women) are stripped of access to basic check-ups (check-ups that would catch diseases like cancer), when fear of each other and our perceived differences threaten to undermine human decency. 

the fears that used to keep me up at night–my own illness, will my cancer come back, what it would be like to die and not get to do all i can in this world–are tucked away in a dusty, dark corner of my mind. there are much bigger things that keep me awake now, that make it feel like an anvil is riding high on my chest, and i cannot hold back a sob to save my life. i resent myself and my capacity to feel this…so very deeply. 

and in other dusty, dark corners, i cleaned out my closet last weekend and found all of my chemo hats and surgical drain holders. i remember shoving them there with force, thinking to myself, “if i get rid of them, i’ll jinx myself and end up needing chemo again.” but today, into the donation box they went. i’m done with them, or at least i hope i am, and i hope that no other person has a reason to need them.

fear and hope. they roll around together in the palm of my hand, like a pair of Chinese boading balls, bumping into each, singing out on contact, ricocheting in different directions.

my seventh surgery is tomorrow. it’s a planned one, following the standard sequence of reconstruction. lucky #7 on friday the 13th. following my mastectomy this past july, the surgical team will swap out the temporary tissue expander, remove the rogue stitch, cut out scar tissue that has caused throbbing cording (little threads of clogged lymphatic tubes that stiffen up), and do some extensive fat grafting to smooth it all out. mike and i will likely spend a romantic evening overnight at UCSF. then, i’ll be off work for a month or so and figure it out from there. it seems to take me at least a month to work out the anesthesia (aka i feel dumb and have no short-term memory), beyond getting cleared to lift anything. 

i’ve seen this movie a few times before. going into surgery in february 2013, i was terrified and in hysterics. right now, i mostly feel meh. my baseline has shifted that dramatically.

or, it might be that in the grand scheme of things, this is just that small.

xo

meaghan