last weekend, i went on a retreat in magical ojai called, “writing and the body.” i didn’t know what i was signing up for, really. it was a christmas gift to myself, booked back in 2015 and forgotten about.
i debated cancelling. some of it involved yoga. i can’t push or pull still, so i’m really good at child’s pose right now, and that’s about it. it also involved writing in front of this epic author, lidia yuknavitch (run, don’t walk, to get her memoir chronology of water) and i’m not a writer and yadda yadda other self-doubts.
but, i put on my big girl pants and went down to ojai. i cried a lot. i learned that crying is a language. i slept in a yurt. i got some stories out of my throat. i held space for others as they worked through their traumas, their abuses, their broken relationships. and the mantra that they repeated to me all weekend was, “we got you.” can you imagine sitting in a room with 40 women who are all looking at you, with love and compassion, and really feeling that truth? lidia said to me, to all of us, “we are the rest of you.” i’ll share one of my unedited jottings from the weekend below, as i prepare to return to work after medical leave tomorrow. the blood is still pooling around my surgical site. and, unfortunately, my doctor realized there is a suture stuck in my breast cavity, poking through my pectoral muscle and into my skin. it’s hurting, and the only way to get it out will be in my next surgery. so, i’m sitting with the pain and discomfort and reminding myself that i’m still here, able to feel pain and discomfort.
beyond all of that, BAYS is launching our third book on wednesday. yes, really! agony and absurdity: adventures in cancerland. it is available on amazon, kindle and ibooks, and you can pre-order now. our launch party is wednesday, and my pops just flew in for it today. i’m so incredibly proud of this book, these 40 other authors, and helping give rise to their voices. and thankful for my co-editor sisters laurie and robin.
here goes…
alive body blood. it doesn’t dribble, drop-dropping like a slowed-down metronome. it floods, pools, screams to the trauma, working its blue crimson miracle through the networks of creeks, tributaries, and rivers, reaching the distressed place. it brings its heat. the trauma site is raw, a cracked open place, black, necrotic. is it dead? no, no. it’s alive. an alive body. the blood mending, enveloping. its molecules like builders of a lattice frame, all connected, holding each other together, becoming a whole again. xo m
C. S. Lewis, A Grief Observed: “Grief is like a winding valley where any bend may reveal a totally new landscape.”
The switchbacks are dusty. Her eyes are bloodshot, the broken capillaries shooting flames. Her skin is starting to burn. Maybe it’s just the sun, or maybe it’s a heat from within. Can a person burn from the inside out?
She climbs and climbs. Passing through gradients of plants—the grasslands, the tall frothy fennel greens laughing at her, witnessing her struggle, offering her nothing. The desert scrub, the creosote bushes with their impenetrable leaves, letting nothing out either, no sustenance for her. And the hot air upwelling the sagebrush scent, but not holding it long enough for her to take it in, enjoy anything.
She trips, her ankle catching on a sharp rock, a rock that’s been there for years, maybe even millennia, longer than her, than all of us. It tumbles down the side of the mountain, gathering speed as it goes, like a sparking comet, setting off a torrent of other rocks in its wake, all going down, gravity pulling them, to the valley.
How’s the saying go, the tougher the climb, the bigger the reward?
She wants to meet them at the top of the mountain. She wants to see them again, Erin, Sarah, Shannon, Heather, Valerie, Cherie. She wants to embrace them, to be held by them. There will be others, but they won’t be there yet. They still have time.
The last turn of the trail, a razor-sharp curve, treacherous for even a seasoned hiker, a traveler who thinks she’s sure-footed and doesn’t even need to look down at the path to check herself.
Then, the plateau, an expansive, empty tabletop, a wind-whipped wasteland.
Where are they?
They’re all supposed to be here, to let her know they are ok, blossoming even, that the place beyond this place is worth the climb too.
The sagebrush scent wakes up her nostrils, her soul. It doesn’t float away this time.
My relationship to my father was largely unexamined. A patriarchal figure who orbited my carefree childhood with BBQ and law & order, but was somehow gentle, emotional, easily hurt by words and betrayals. Some say his heart on his sleeve, recusing baby bunnies and nursing them to health. Citizen of the Year in my speck of a hometown, because of his generosity. And his loving hands tending a well-planned and pruned landscaping around our turn of the century farmhouse – the envy of the neighborhood.
But I saw him wash my brother’s mouth out with soap, Dial, in fact, the liquid kind. All for calling someone a “butthole,” which, I wondered, don’t we all have?
That soap though was enough to keep me in line. And he beady brown eyes when they shot me “the look.”
On the day I graduated high school, he shaved his beard. The one he started growing when my mom was pregnant with my brother, 6 years my senior. I couldn’t do the math, but saw it for what it was – the end of an era in childrearing and beginning of an empty nest. What would he do without all of us at home?
My dad made me cringe, during these early adult years, want to hide in fact, which I did under my hoodie when he didn’t give any fucks to drive down a sidewalk full of people at my new university because it seemed more convenient that way, like he had the right of way and could get closer to my dorm door. There were a lot of moments like this.
He made my heart swell though when he stayed up all night with my grandma, his mother in law, as she vomited and bled and needed new bandages after her drive-by mastectomy.
He gave me pause when he cried when meeting his first granddaughter.
Who is this person? I found myself perplexed.
It took my 24 years to see that he was as messy, full of juxtapositions and contradictions as much as any human being. And another 8 years to realize how much I loved him, watching him I the hospital bed, small, quiet, and smelling of Dial soap.
The switchbacks are dusty. Her eyes are bloodshot, the broken capillaries shooting flames. Her skin is starting to burn. Maybe it’s just the sun, friend and foe, or maybe it’s a tear from within. Can a person burn from the inside out?
She climbs and climbs, passing through gradients of plants – the grasslands, the tall frothy fennel greens laughing at me, witnessing my struggle, offering me nothing. The desert scrub, the creosote bushes with their impenetrable leaves, letting nothing out either, no sustenance for me. And, the hot air upwelling the sagebrush scent, but not holding it long enough for her to take it in, enjoy anything.
She trips, her ankle catching on a sharp rock, a rock that’s been there for years, maybe even millennia, much longer than her, than all of us.
It tumbles down the side of the mountain, gathering speed as it goes, like a sparking comet, setting off a torrent of other rocks in its wake, all going down, gravity pulling them to the valley.
How’s the saying go? The tougher the climb, the bigger the reward? She wants to meet them at the top of the mountain? She wants to see them again – Erin, Sarah, Shannon, GG, Heather, Valeria, Cherie. She wants to embrace them, to be held by them. There will be others, but they won’t be there yet. They still have time.
The last turn of the trail, a razor-sharp curve, treacherous for even a seasoned hiker, a traveler who thinks she’s sure-footed and doesn’t even need to look down at the path to check herself.
Then, the plateau, an expansive empty tabletop, a wind-whipped wasteland.
Where are they?
They’re all supposed to be here, to let me know they are ok, blossoming even, that they place beyond exists and is worth the climb too.
The sagebrush scent wakes up her nostrils, her soul. It doesn’t float away this time.
“keeping vigil at the bedside” is a phrase that’s been rolling around in my head for awhile now. at what point is something major behind you, even when it feels ever-presently beside you? when do you move on, devoting your attention to other crises? when do others move on, seeing that you will in fact live, that you’re ok and they’ve helped get you through the worst of it, or that the rubbernecking of the wreckage isn’t as gruesome as it could have been so let’s keep driving away?
i kind of feel like i’m floating in that space. i had a mastectomy, an amputation. but it was my sixth surgery in this crappy hand. i’m hardly a novice now. i know the order of name, birthdate, blood pressure, temperature, pulse-ox vitals. the telltale steps backwards then forwards in recovery. the emotional highs and lows.
but, i’ve had to go back on intense antibiotics for over a week now, because this red ring around my breast, “a bullseye” my surgeon aptly called it, won’t recede. there is throbbing and heat. but, i don’t have a temp and no marked swelling. so, it could be, simply, healing, my body knowing what it needs to do to re-establish blood flow in the area, rebuild the capillary networks that were severed by the surgeon’s knife. and, the only way to know for sure is to open me back up. my surgical team (and i) will do everything possible to keep that from happening. maybe staying on this septra antibiotic ’til kingdom come. maybe getting into the hospital for IV antibiotics. those are the 2 options right now. i head into the doctor later today so we should know more. i imagine (or hope?) i’ll stay on the septra. even though my tum hurts on it and i’m sleeping pathetically. better than a one-way ticket to a crappy hospital room without a view though.
it dawned on me during this recovery that i was technically diagnosed with Stage 0 breast cancer in my left breast. sure, it wasn’t invasive and it definitely wasn’t stage IIB and into my lymph nodes like my first diagnosis, but it’s still a diagnosis. not as traumatic and jarring. but something.
i know that some pioneers in the medical community (my UCSF surgeon included) are trying to get away from calling this “cancer,” or even staging it. because some women can live with it forever, never having it turn into invasive disease. but then for others, the watching and waiting approach just proves useless as the cancer grows. and no one understands the rhyme or reason either way.
last week, my oncologist expressed her happiness with my surgical decision and that she thought it was best. that’s a strong statement when really, the decision was left up to me. but, i’m hearing that same response often from all corners of my care team. so i have to take comfort in that.
but still, that’s where i am today. the long slog is still the long slog. so i wait, keeping vigil at the bedside.
that’s how healing goes. i’m always reminded of the double meaning of “patient.” i’m a patient, who must be patient. but there is really only so much patience a person can have.
the good news is in though: my pathology came back, and there is no invasive cancer. only the areas of pre-cancer that we already knew about. no cancer surprises, sneakiness, or jiu jitsu.
that’s the best news we could have hoped for.
however, after getting off the phone with my doctor that evening, i couldn’t take a deep breath. i felt like i might hyperventilate. the feeling persisted over the next several days. i medicated in various ways–ativan, narcotics, pot gummies, gabapentin (this new neurological – hot flash prevention med i’m on), even a sip of wine (AMA), straight from the bottle. i listened to guided meditations. i watched HGTV. i got click-happy on amazon.com. i stood in the shower and let hot water scorch my back (without getting my bandages and drain wet). i bossed my parents and mike around (aka hitler style).
but, on tuesday, late in the afternoon, the switch flipped. i could breathe. the sun was shining. i was mobile. oh happy day!
my surgeon and therapist explained that this happens for a few reasons. PTSD, obviously. then, all my energy going into the surgery, mentally preparing for it, where afterwards, all that anxiety has nowhere to go so it comes bubbling up, lodging firmly in my chest. and then all the anesthesia, pain meds and counter-effect adrenalin pumping through my body. my acupuncturist described my pulse this week as “surging…too much. like you just took speed…wait, did you just take speed?” nope.
my surgeon also said that she expects this to come in episodes for the next 4-6 months. i appreciate her straight talk.
to fill you in on the surgery itself and some of the absurdities of the whole enchilada…
because i can’t have IVs (or blood pressure for that matter) in my right arm, because of the removed lymph nodes and fear that sticks would cause lymphedema, my left arm is the game in town. but with the left side being the surgical side this time, and wanting to keep that as free as possible, the pre-op nurses said that my IV will definitely be going into my foot. ouch! to make me feel better, they said some babies get the IV in their temple. no, that did not make me feel better–poor babies! so leading up to surgery, that was what i was MOST stressed about. how would i get up to go to the bathroom without getting tangled? the nurse told me to bring pants to be comfortable for my stay. how would i get the pants over the IV though? my BAYS ladies came through and i had many offers of tear-away pants as a solution. how would the sensitive top of my foot handle a needle? i put lidocaine cream, leftover from chemo, on my feet en route to the hospital. i was working all of my phone-a-friend options.
that morning, while waiting nervously in pre-op, and after a lot of back and forth with the nurses, anesthesiologist, and surgeons, they decided that my left arm would be just fine. and if necessary, they’d change it to my foot during surgery.
ok, one problem solved.
coming out of surgery, still with my IV in my left hand (yay! small victory!), i was in recovery for a few hours longer than planned. they couldn’t get my pain under control. oddly enough, the oxy wasn’t doing shit. who knew a person could be resistant to oxy??? i described my pain as i got a line drive straight to my chest, i was at a 6 out of 10 on the pain scale. maybe a 7. not workable. they switched up my pain meds and i went down to a 1-2. much better. and with all those narcotics, too, came nausea. that has mostly subsided this week now, thankfully, as has my sore, scratchy throat from the intubation tube. the general anesthesia is perplexing too, as i seem like i’m totally with it, present, but then have zero memory of many conversations, hours and minutes. i imagine its cumulative, and this being my 6th (!) surgery makes me even foggier. thank god i’m off work, to spare all of my co-workers my 30-something senior moments.
the surgery lasted 5 hours, instead of the planned 3 hours. why? because, i had a “sneaky big breast.” wait what? my last day in the hospital, my surgeon visited. she asked, what size bra did you wear? i said, maybe 34B or C. she said, nah. nah. you’re a DD. oh man, i wish i had know that all along!
with the combo of tearaway pants and DDs, there has to be a stripper joke in there somewhere.
then, when being wheeled in my bed from recovery to my hospital room, we rolled by a “lactation room.” i later explained to my family how hilarious it was that i passed a lactation room. because i would NOT be needing that anymore! they chalked it up to pain meds and the deep recesses of my brain…but i’m going to find that damn lactation room and take a pic to prove it.
oh, the last thing i’ll share is the other wonderful thing about my surgeon: she sings a song of your choosing, when you come into the OR, kind of as a lullaby to relax as you drift off into unconsciousness. my song was the nina simone version of “ooh ooh child.”https://m.youtube.com/watch?v=3aoCqU4QcZo. it resonates with me so much and what i hope for, for myself, you all, and of course the world. things are gonna get easier. things’ll get brighter. we’ll walk in the rays of a beautiful sun, when the world is much lighter…
xo and thank you for all the messages, texts and emails and everything else too – m
i wrote this last week when i had an infection scare. all is clear so far though, but we are to watch it and take my temp often. infections at surgical sites can happen at the drop of a hat. i’m off pain meds, largely, and the drain is out, thankfully. missing my parents and happy to have mike home. xoxo m
Thank you so much for all of the support and for continuing to follow along here after all these years.
Meaghan is out of surgery and resting in recovery. She is still pretty sleepy but her color is good. The surgeon reported that they got all of the tissue and did not have to take any nodes. She also thought the tissue seemed normal to her but they sent it along to pathology. So the reports have been positive thus far and we’ll learn more during our luxurious stay here at UCSF for the next day.
Meaghan or I will report again soon once we have more updates. Rink and Kathy are here as well which is a great help to us.
Thank you again for all the support, prayers, good vibes, thoughts and whatever else that has been sent. All are appreciated.
it is a serious thing // just to be alive / on this fresh morning / in this broken world.~mary oliver i’ve been working with a leadership coach for the past few months. recently, i had a big a-ha moment, and it has to do with anger. my personality type does not do well with anger–being angry, having someone be angry with me, being around anger, and so on. i’ve always know that anger can make me feel physically ill. even when mike’s voice has a tinge of anger, i get stomach vibrations.
ok, so what?
my coach pointed out that when i should, rightfully, be angry, i tend to brush it off, put it away, never visit it again. my homework: get in touch with my anger.
this explains a lot to me, in how i’m processing the horrible state of the world. in how i dealt with every single flight the past 3 months being delayed, cancelled, or with lost bags. in how i vomited for 5 hours straight one night last week with some strange vertigo-inducing virus. in how i spent the last week searching every nook and cranny for a lost library book, only to have it turn up right in front of my face. in buying a hard-boiled egg at a restaurant to crack it open and have the un-boiled egg run out. oh, and in how i’m handling my mastectomy on tuesday. big and small and big.
i know i SHOULD be angry. i just don’t know how. do i scream? do i punch something? do i cry? do i pop bubble wrap?
i spent the past week with friends at a wedding, and in my hometown with my family. it was so special to see so many loved ones in such a short time (and being in staunton for tour de donut and ribfest made for a few extra tasty lbs). but, in the process of trying to get in touch with my anger, i was instead feeling…apathetic, even a bit numb, and, ultimately, sad.
i did some digging around and found this quote by liza palmer: anger is just sad’s bodyguard.
maybe that’s it. maybe i’ve lost all my armor, my defense mechanisms, my immunity. all my body guards. and all that’s left is sadness. without anger, sadness is there, exposed.
mike and i went to chemo with my dad this week, and we visited with their favorite nurse, sally. she’s had major health issues of her own and we sat, commiserating. sally spouted off one of my favorite mary oliver quotes–tell me, what is it you plan to do with your one wild and precious life? and it prompted me to dig into my mary oliver files. re-reading her writing made me shed some tears. maybe tears of anger, maybe of sadness, maybe of love and life. it’s all the same, though, isn’t it?
so, one last mary oliver poem, wild geese, to set us off. it also happened to be one of my friend erin’s favorites. You do not have to be good. You do not have to walk on your kneesfor a hundred miles through the desert, repenting.You only have to let the soft animal of your body love what it loves.Tell me about despair, yours, and I will tell you mine.Meanwhile the world goes on.Meanwhile the sun and the clear pebbles of the rainare moving across the landscapes,over the prairies and the deep trees,the mountains and the rivers.Meanwhile the wild geese, high in the clean blue air,are heading home again.Whoever you are, no matter how lonely,the world offers itself to your imagination,calls to you like the wild geese, harsh and exciting –over and over announcing your placein the family of things.
tuesday will be here soon, and then it will be done. the pathology report will be here soon, and then it will be done. sadness and anger and the soft animal of my body. xoxo
in one of my first blog posts to Caringbridge, back in 2012 (yes, 2012), i lamented how disruptive cancer was and is, how i was supposed to go to iceland and italy and so many other places. i feel as though i’ve been so lucky to be able to shake a fist at cancer and go. go go go. to all those places and more.
instead of detailing the incredible-ness that is italy, i’m pasting a story that my dear friend erin wrote to us. part of it is also published in the last BAYS book. i have no doubt that if she were still alive, she’d invite me over for a sampling of italian red wines and ask me to regale her with stories of our trip, what it was like to ring in our fifth anniversary on the grand canal in venice with an aperol spritz in hand, how it felt to bike through the streets of florence, ogle at the world’s most precious works of art, eat gelato in the cinque terra, navigate the cheese counter in bra, and linger together, holding hands, over the views of the italian alps in tuscany. the story erin shares has many layers, but her description of italy was that of which we experienced. and we’re grateful.
I read the recent posts with so much consternation, so much sadness for the anxiety and the anger and the infuriating contradictions in ‘recommendations.’ I fight with all of it too and have been on every side of this debate, from my post-diagnosis juicing regimen (beets, carrots, fresh turmeric root!) to my full-throated refusal to give up yet another aspect of my life that matters to me. Sick of quinoa and green tea, I have thrown up my hands and said ‘I can’t live the rest of my life like I’m on a cleanse.’
But, I had a vision this morning. I want to sweep us all up—every one of us—and fly us to Italy. At least in our imaginations. When I was in my twenties, I lived in Europe, and once, when my parents visited, we went together to Positano. This dramatic centerpoint of the Amalfi Coast is one of those dream-like towns with ice-cream colored houses impossibly stacked on each other, on steep cliffs down to the Mediterranean. One day, on the suggestion of a local, we hiked up, away from the town, even higher on the cliffs—up and up and up. We steadily climbed 1,742 stairs up to the peak, past tiny vegetable gardens wedged in between houses, olive groves and lemon trees on precipitous terraces, until we reached a tiny restaurant with a patio looking down over all we had climbed, the sea sparkling astonishingly far below.
To call it a ‘restaurant’ is actually a misnomer: do not think menus or waiters or even a cash register. It was really two or three rickety tables on the back patio of an Italian grandma, a ‘nonna,’ who was basically letting a few knowing strangers come over for lunch. You ate whatever she brought you, and you blessed every single morsel for the unbelievable tastes it emitted.
Can you picture this? If we were there, there would be no ‘kosher,’ no ‘vegan,’ no ‘gluten-free.’ She would not countenance putting anything ‘on the side.’ There would be squash blossoms picked that day, and pillows of pasta she rolled out on her counter that morning, and tomatoes that would make you think you had never before eaten a tomato in your life. There would be fish, grilled with spices and herbs so insane you would be sucking the bones for every last possible nibble because you did not want it to end. There would most certainly be wine, but washed down with a lot of water, and possibly some grappa at the end. When you finished this meal, pushing the chair back from the table with the sun on your face, every cell in your body would be singing with contentment. Then you would have to figure out how to get back down those 1,742 stairs. Can you feel it? Can we remember that food is not medicine and food is not poison? It is nourishment we need, both body and soul. It is communal and it is pleasurable and it does not have the final word on our future.
I am not suggesting we spend all day in the kitchen. Far from it. Let us just love food more and torment ourselves less. Let us give thanks for the choices we have and try our best not to torture ourselves over them. Let us please remember that if we climb 1,742 steps, we deserve an incredible meal.
thank you for all your anniversary wishes. here’s to another year around the sun for all of us. xo meaghan
keeping abreast | keeping a breast 