keeping abreast | keeping a breast

thanks for all the warm birthday wishes. they were on par, because paired with radiation, i’m getting hot. but my birthday was wonderful.

i’m about to enter week 3 of 5 weeks of daily radiation, and like all my treatments, i’ll be so happy when it’s done. everyone told me it would be no big deal, that going in every day would be the biggest annoyance but that physically, i wouldn’t notice anything until week 3 if i noticed anything at all. so i prepared for that.

i’ll go back to the beginning of it before coming back to now. radiation therapy is a local, targeted therapy that works by damaging the DNA of cancerous cells. although in my case the doctors are unsure if it will make a difference, they want to be cautious and aggressive because of my age and type of cancer.

the week before radiation was to begin, i had a 2-hour appointment with the radiation oncologist (different from my primary oncologist) and all the technicians.  most of it was me topless laying on various tables with my arms elevated above my head. i got 7 tattoos all across my chest so that lasers know where to line up for each treatment. i also got a cast or bolus made of my chest. and a CT to see where my heart and lungs are to try and avoid them.

unfortunately the tattoos are nothing to write home about and look more like blue freckles. and the bolus, well i just had to share a picture of me wearing it on the radiation table. yes, i get to keep it after treatment is over. and no, this is not me at my finest but if you can’t share your bolus photos, what can you share?

anyway, the rad. oncologist takes all this info into a computer to calculate the radiation field and my daily dose of radiation.  meaning, where and how much. my field is from the center of my chest to my armpit and slightly up my neck. this is because of the lymph nodes that lit up with cancer on my PET/CT in august, some near my sternum and the rest in my armpit. the how much question is something i don’t understand, except that the daily does of radiation to my heart and lungs is ~137 grays (a fancy unit of measurement). apparently a chest x-ray is several thousand grays to your heart and lungs, and flying in an airplane gives a whole body low level of radiation. so my doctor coaxed me to believe these ‘therapeutic doses’ are going to be safe for life. ugh.  she showed me a lot of fancy images on a computer screen too, which gave an air of certainty and legitimacy. that and she’s a walking encyclopedia of statistics.  but still, all of these treatments carry risks (radiation therapy can cause my expander to fail, give me a broken rib, or a second cancer or sarcoma in 20 years too, among other pleasantries).

a few days later, i went in for my dry run (dukies, as an aside, i kept thinking of our dry run to the duke/yale career fair in dC, and it’s all i could do to keep myself from giggling on the radiation table). they made sure everything was lined up and the dosage was appropriate. i do appreciate all the redundancy and double-checking in their system, especially around something so technical. my rad. onc said they are ucsf’s only department to do this, because it’s so expensive. yikes. i started radiation that day, april 22. i go every day at the same time, and treatment lasts about 15 minutes.
every other day, i wear the bolus to target my skin. or they tape it to me, to the table. with a mastectomy, the breast cancer can reoccur locally in the chest wall or skin. so during radiation, the skin is actually a major target. if i had a lumpectomy, the radiation would target the breast tissue instead.  i don’t have any tissue left, just a thin layer of fat and skin. so here we are.

back to now. unfortunately, radiation hasn’t been no big deal. day 1: pins and needles and shooting pain. how is that possible when the surgery took out all my nerve endings??? the rad. oncologist said she rarely sees this and was surprised given that the dosage hadn’t added up to much yet. ever since then, i have shooting pain up my armpit and into my chest. there’s that, and the sunburn started late the first week, rather than the third. the doctor has given me various creams to apply morning and night, and my acupuncturist has added some in as well. this week because of a rash across my chest, they added a topical antibiotic too. i alternate between crying and laughing about it. i don’t want to be special or have uncommon side effects. really. flo, the radiation nurse, and i have gotten pretty close.

i also took a few evening naps last week and am noticing the radiation fatigue catching up already. it is true that so many residual side effects from chemo and the past 9 months linger on, largely unnoticed until really noticed.

i had a nightmare last week, that the team of doctors told me i’d have to radiate my whole body instead with a lot of needles. i was strapped onto the table and screamed, “you have to kill me to save my life!” so many undercurrents here.

i guess i’m sharing all this with you to be clear on the reality. most of my days and moments are generally happy and pleasant. i’m upbeat. but there is a lot festering below the surface that is easier to write about, with the journal as my outlet. some of the posts can come across as melancholy, but it’s the reality. for me being continuously positive isn’t genuine or helpful. my humor, and husband, are still in check though.
may 28 is my final radiation treatment.  the burn peaks a week afterwards, and the other side effects are cumulative for awhile longer too, so the doctor monitoring will continue.

life goes on. you’re busy. i’m busy. spring has sprung a lot of babies to welcome to the world.  cailyn to ashley and harper, sam to anne and mark, soloman to jocelyn and mike, dave to emily and dave. happy mothers day!!!

as my grandpa pop just said in a letter to us: “hi to all the shigs at sea.” i have no idea what it means, but i like it. [update: we got clarity from pop, and it was during WWII each morning on a ship in the aleutians and south pacific, the captain would say, “good morning sailors and all the ships at sea.” shigs, ships. same difference.] 

xom

hiya.

long time, no talk.

i’m here, still plodding along. i started radiation last week, and i’ll share more on that….um…*unique* experience soon.

in the meantime, i want to close the loop on my expander. because it’s weird and complicated and misunderstood. 

during the mastectomy surgery, they remove all the breast tissue. we then had a few options–do nothing and leave the skin without a nipple, immediate placement of the silicon or saline implant, or temporary placement of this plastic expander under the pec muscle. for lots of reasons, i chose the last one. having the muscle on top can provide support. it can also help avoid some of the visual rippling effects of the final implant. however, it can be riskier with radiation (e.g., it could all collapse and leave me with nothing) and does mean more procedures.  in 6-12 months, i’ll have another surgery to swap it out for the final saline implant. we get to choose the final shape and size later, but let me tell you, you haven’t lived until you’ve tossed some saline implants in the air.

for the 6 weeks after surgery, i had weekly appointments with the plastic surgeon. he’d slowly fill the expander with saline each visit; the goal was to stretch my pec muscle and match my breasts in size. the pic here is of the big ass needle and syringe with 50cc of fluid that was about to get stabbed into my breast. totally crazy (sunglasses for scale, btw.). the little plastic contraption on the tray is a magnet, used to find the magnet in my expander to insert the needle into. let’s just say it didn’t feel awesome going in and the stretched muscle is sore for a few days afterwards. mike sitting there watching the injection could literally see my boob getting bigger. science. while we knew the breast weight removed (376g, fyi) and tried to calculate how much saline to put into the expander, it was ultimately a visual decision (~350). kind of not science. i mean, i could have upgraded one side to a double dd, but stuck with the matching barely c.

i have a love/hate relationship with the expander. it makes me essentially look normal to you and able to wear clothes and a bathing suit just fine, even. however, it feels like i’m wearing a rock strapped to my chest. like, be careful when we hug so that you don’t get a black eye. because my breast nerve endings are mostly dead (more on that in the next post), i find myself bumping my expander into things (e.g., the fridge door) and only feel it when it gets super compressed.  it just doesn’t know its own boundaries. i have physical therapy twice a week, where they move the expander around to ensure the pec muscle stays over it and it scars the way we want it too. i’m supposed to do those moves 30 minutes a day too, along with a bunch of stretches to get my range of motion back. the expander is sore and feels like it’s sitting high up at my throat most days. there is also a big divet at the top of the expander, which can happen after removing so much tissue to start.  the plastic surgeon said he could fill with stomach fat later to smooth it all out. silver lining?

another crazy thing about the expander is that i need to be extra careful about infections. i have a sore throat that’s graduated into a cough, so my radiation oncologist got me started on a z-pack today. apparently any kind of infection can travel in your blood stream and land around the expander, causing big big problems. yoi.

my chemo-induced acid reflux has popped up again, and i have some canker sores. i realize that no matter how much i feel as though i’ve turned a corner, and i have, all of that shit my body endured over the last 9 months is just below the surface waiting to rear its ugly head. and sometimes i run into a boundary at 60mph. splat.

anywho, just wanted to check in. mike and i went to joshua tree and palm springs last weekend. my summary: glorious, hot, hiking, eating, convertible, art, margaritas. we need another day/month/year of that.

i’m also glad that my last post on helpers could help some of you. thank you for reaching out to share your stories.

miss your face and looking forward to seeing many of you soon.

xom

i received a surprise set of envelopes in the mail this week from the ‘fish project,’ or beloved work colleagues who were together in portland for an annual retreat. i’m calling it a school of fish, pictured here, because these people have taught me so much over the almost 9 (!) years. i’ve been lucky enough to be part of their group. so clever and thoughtful, which is the not surprising part. thank you to all the CGBDers. i missed you. i hope beto et al poured one out for me. and you’ve saved me a seat in nebraska.

i started back to work full time last week. on friday evening, i instantly fell asleep in a comfy chair. talk about going from 0 to 60 mph. it’s been hard, in both the physical and mental aspects, and that i still have a lot of appointments and needs for recovering and healing. and, i don’t know what my boundaries should be or are until i hit one. like, hard. brick wall hard. splat. i’ve never been really good at establishing and following through on boundaries anyway (like that yoga class in the middle of the work day that i always refer to, or even eating lunch outside and not at my desk. or going to bed at a decent hour, because bedtime is when you start cleaning the house, researching vacations, or super serious conversations with your partner, right mike???). but no time to start like the present. i equate the last week and a half to building the car while i’m driving it. it’s hard to understand and simultaneously communicate my physical and mental limits.

now that the likely worst physical parts are over, it seems difficult for people to understand why i may need more time off work in the future. all of the treatments are cumulative, i know for sure. a good friend also pointed out to me that i communicated early on in the diagnosis that, while things could change, work would be a helpful, constructive distraction. it was. i worked through the big gun chemos. and i only took days here and there when the side effects were too much, like i was throwing up and couldn’t see straight or too achey to focus (side note: i won’t speculate on the quality of my work since august…sorry barry and team and grantee and partners!).

i was in survival mode, marching week to week with my plan in place. i didn’t have time or energy or capacity to mentally process what i was going through. that is clearly starting to happen now though. and for me, that’s a different kind of exhaustion and challenge. add in the normal job tasks, things like processing super minute details, multi-tasking, holding several trains of thought at once to make a point, or long and focused conversations…and a full day of them, and i’m spent.

comparing chemo and surgery to the aftermaths of chemo and surgery are analagous to comparing pecans to walnuts. they are both nuts, in their own ways. and both make me a little nuts too. you know what i mean. bad jokes aside, for now.

so i’m figuring the work thing out. and getting used to, i guess, living with uncertainty more broadly. and thankful for a team and workplace who is ok with that too.

this brings me to another reflection. everyone’s cancer experience is different. just because i worked through chemo, doesn’t indicate anything about anyone else. what i mean by that: say you share an observation with another cancer patient like, “oh, i know a woman who worked all through her chemo.” well, this implies that the person you’re talking to should be doing that as well. it’s hard not to say things like that, because you want to be upbeat and positive or relate to that person. but sometimes comments like that have left me feeling horrible, that i’m not doing enough or i’m not super human. i also have to laugh (uncomfortably) at how often i’ve heard: “my aunt/acquaintance/mom’s best friend had X cancer.” me, “oh, how is she?” “she died.” eek. please don’t do that. sometimes, even hearing the success stories of people who have overcome it doesn’t help, especially when you’re in the middle of the shittiest of the shit. because if you’ve heard one cancer story, you’ve heard one cancer story. as i’ve commented before, even breast cancer, one of the most common, is super varied (there are so many types–invasive, in situ, lobular, triple negative, her2+, estrogen negative, progesterone positive, pre or post menopausal, etc etc as your eyes glaze over).

i’ll write more in the future about what support has resonated most with me. everyone is different and things can change day to day, hour to hour. but there are some universal things in there.

and then a related observation: everyone’s cancer frame is different. cancer is often commented on as a war or something to fight, destroy, conquer. other frames i’ve met are coexistence. or a race to be won. or something to ignore. or welcome as an invitation to view your soul in a new way. or show up and get through the treatments for. i’m not really violent (my one wish really would be world peace…well, selfishly, maybe no debilitating diseases) and can’t even watch criminal minds too late in the evening, so the battle frame didn’t cut it for me. during the roughest chemos and surgery fears, i focused on my breath and pushing out my diaphragm. breathing in all the love and support from you, and exhaling all of the dying cancer cells.

even the survivor frame, or someone who has gotten through adversity, doesn’t work for people (see: last blog post on waiting for the other shoe to drop. and google what it means to jinx something). survivor can seem too heroic. some people like thrivers, as it implies a mastery and hope, moving beyod trauma to find meaning and purpose. navigator and veteran also come to mind. others just don’t want to be labeled at all and want to instead forget about the whole thing, or at the minimum, not be thought of as a defeated, helpless victim or sickly patient. maybe instead of fighting the cancer, they are ok living with it. or are just ok.

the language of stable, remission, and cure are very slippery too. after treatment is over and there is NED (no evidence of disease), does that mean i’m cured? or in remission? we won’t know until we know. aka we don’t know.

i admit though, we (me included) all love a good survivor story and are in awe of real life miracles. like the story of david and goliath, we’re drawn to them and hearing about triumph, a win for the little guy, clenching victory from the jaws of defeat. it just doesn’t work for everyone, all the time. how about just being me again, not identified by my right breast and its stupid cancer? (side note: when i tell you i have breast cancer, don’t look at my breasts. i know it’s hard not to do, it’s almost sub-consious even. if i told you i had testicular cancer though, would you look at my crotch? that’s what i thought.).

anyway, i don’t know what i am or want. i’m ok with whatever you call me for now, until i come up with something that fits. in talking yesterday with a co-worker who has lived with and through cancer, he commented that we’re now part of this exclusive club that we never signed up for. but which has given us this depth of nuanced understanding about each other and, at our best, about life.

i learned this weekend that a BAYS sister, who i’ve written about meeting in december, passed away. and as was shared in my alumni magazine, a classmate also died of stage iv breast cancer. and gravity, wants to bring me down. stark reminders of the reality of this disease, of bodily lives gone before they were able to be with us through all the seasons, to borrow from an email from my dad. i’m trying to get that wording right, because in many ways, these people live on in all of us and the things they gave us, taught us. but i like that analogy, that we don’t know how many seasons we’ll be part of and we all hope to live to winter and live through a long, beautiful winter at that.

we can try our best to celebrate the other seasons too, if they are all we are given.

thank you, and talk with you soon.
xom

since my diagnosis, i haven’t felt like shopping much (at least for clothes that is, home goods are another story). feeling bad about how i feel and look doesn’t lend itself to wanting pretty things, at least for me. yoga pants and chuck taylors are my uniform. i haven’t bought a new pair of shoes in a year. shocking to some of you, i know. especially my co-workers who would share in my delight when a zappos delivery came fairly frequently. i mentioned this to mike and he didn’t believe it, but at the same time appreciated it as the numbers guy. anyway, speaking of shoes, i know one of my biggest challenges going forward is moving through and beyond the feeling that the other shoe is going to drop. that i’ll get metastasis. and my number will be up.

as long as i can remember, i’ve had the sense that i would die young. no reason for this in particular, i’ve just always felt this way. to be completely transparent, not knowing if i’d have kids or not stemmed from this. i just figured i wouldn’t be given the opportunity because i wouldn’t live long enough.

that might be jarring for you to read. i’m sorry.

when i got diagnosed, while it was shocking and distressing and continues to be, part of me wasn’t surprised. it felt like this was part of the plan all along. and getting an aggressive metastasis is part of the plan too. and doing this blog as a way to share information about young women with breast cancer and show one way to live through an illness feels like it’s my contribution to the world. and once that contribution is up, so is my time.

my therapist has been talking me through post traumatic stress. one of the symptoms of PTSD is this sense of impending doom or waiting for the other shoe to drop. add that with my pre-cancer feelings and it’s fuel for a big ol’ emotional storm.

we received news that one of our partners in british columbia, pam, passed away this weekend.  we are all thinking of her extended west coast family and her big, sweet and kind heart. statistically i know that more people are living with and through cancer longer. the sad reality of cancer is that people die all the time though.

i’m sharing this in a very matter-of-fact way because it’s sometimes easier to detach from it. now my therapist and i are working on rewriting the story, or stories, i have created for myself. we come up with ways to recognize those thoughts, think about how they are useful or not, and write alternative endings. or as i mentioned in an earlier post, unpacking and repacking the emotional luggage (luggage sounds better than baggage, cargo, freight, etc).

these thoughts can be paralyzing, but even if all this happens as a part of me thinks it will, so what? well, i don’t particularly want to die as i’ve mentioned before. i’m not afraid of pain or suffering anymore, especially as discomfort has been the price of admission into deeper feelings and thoughts. i would hate any grief of loved ones left behind. the uncertainty about what happens to us after we die is also somewhat distressing (heaven, hell, reincarnation, worms…i don’t really have a strong sense of what it is). but the most difficult part of dying for me is missing out on life and all of the amazing things and people in the world. (as an aside, this is an interesting thought exercise about dying. what is it that you’re most afraid of? we are a culture don’t talk about this much, or celebrate it at all).

in the meantime, then, i write. and journal. and chronicle. 

we started this blog in august as a way to share information in one place about my treatment. it was selfish, so that we didn’t have to repeat ourselves. in a way, it’s continued to feel selfish, as it’s my journal and space to process what’s happening and go below the surface level ‘how are you’ conversations. if you read along, you might feel the ups and downs too. it’s provided therapy for me, much like i’ve read about how writing helps take control of the memories in other situations (see the iraq veteran’s writing project as just one).

as i progress in treatment, other goals i’ve thought of for this blog are education about a super common cancer (1 in 8 women will get breast cancer. 1 in 8!) whose treatments are varied, complex, and still a bit of a mystery; sharing the challenges of a young person living with cancer; and unveiling simple truths about the human experience that we all share but don’t always talk about. illness and grieving have shifted from being a community process to a private one in our culture. i loved this article from npr last week (caring bridge gets a shout out – whoot!) that talks about the uptick of blogs focused on illness and death and how that may be changing the american culture in a positive way. death and taxes – those things are the only certainties, right???

it’s not a goal but an unintended surprise has been the support we’ve received through the blog. it’s tremendous and brings us incredible joy, warmth, and tenderness and a kick in the pants every once in awhile. we’ve also loved hearing from you, about you, your thoughts and what’s happening in your lives; in a way, we feel more connected to more people in a deeper way than ever before. it’s reminded us that we’re not on our own, everyone experiences trauma, it’s normal and natural and a journey we are making together. 

it also feels like a throughline for me. while an undergrad at notre dame, i did social science research with cindy bergeman; she studied how social support contributes to resilience in battered communities. we interviewed holocaust survivors and african-americans who came up through the civil rights movement (i cringe thinking of my naive 19-year-old self asking these phenomenal individuals all sorts of questions). her research shows that people with strong social support networks live much longer, having higher resiliency. an article came out last year in psycho-oncology where increased social support from family and friends for young women facing breast cancer increased survival rates significantly.

so when i say you’re my immune system, i’m not kidding (and all you people at tides canada who are doing hemp seeds in your blueberry smoothies and forgoing daily cokes for me, gracias).

it is hard not to feel valued, that your life is worth something, when so many people are sharing their messages of support with you. i hope you are having the same experience, because i value each of you and your contributions to the world, and to my life too.

that’s what i have for you today. i know my contributions to the world aren’t up yet, and it’s time to go shoe shopping. in the meantime, a sweet hug to pam, wherever she is. our hearts are heavy.

xom

we’re getting new windows and a door in the west side of our very old house. the early winter rains hit here the hardest, leaving some moisture behind for the start of sneaky dry rot.

the full-lite door was installed yesterday, and it’s amazing the new light coming through it and how the whole space is transformed.

it’s an effective parallel to my life. big storms. fresh start. new light. when you peel back the layers, though, you find the scars.

i have hair now, eyebrows too. and with the help of fabulous latisse, some eyelashes. i could likely pass for a woman hard core enough to buzz cut her hair. when walking in the neighborhood, little kids don’t open-mouth stare and at the grocery store, the check-out clerks don’t search my face trying to figure out what is different, what is missing (all of that took some getting used to, but there are only so many hats that are comfortable and not too hot and not too cold, or wigs that don’t itch terribly. eyebrow pencils are work. sometimes you just want to be free. this was the first time in my life i was physically different, in the minority, for an extended time. a definite growth opportunity for being comfortable in my own skin.).

all in all now, no one would automatically assume i’m a cancer patient.

it’s tricky, because we all want to put that behind us. with hair, there’s a sense among you that, “it’s over. she’s back. normal again. we can breathe, move on.” i’m not back. i’ll never be back, even when the heavier treatment ends later this year. i’m changed and am living life differently, or have plans to live life differently. and there are scars–both literal and emotional–that will stick with me. i was struck at the commonweal retreat by how many women mentioned this challenge of being done with the toughest treatments like chemo but not being back to themselves. whether it be their appearance, chronic fatigue, memory issues, or anxiety, they don’t feel like jumping for joy. and the outside pressure to move on exacerbates things.

something else i’ve been thinking about stems from quotes on scars my friend julie sent. i liked this one the most:
“contrary to what we may have been taught to think, unnecessary and unchosen suffering wounds us but need not scar us for life. it does mark us. what we allow the mark of our suffering to become is in our own hands.” – bell hooks, All About Love: New Visions

ok ok, and this one too:
“sometimes it’s the scars that remind you that you survived. sometimes the scars tell you that you have healed.” – Ashley D. Wallis, Sometimes

we’re all healing in our own way and time.

this connects to a timely book i just finished on post-traumatic stress and post-traumtic growth called, what doesn’t kill us – the new psychology of post-traumatic growth by stephen joseph (i promise i’m sprinkling in some of the fun reads that you’ve sent!). we’ve all heard of PTSD and are familiar with it in soldiers. studies come out frequently now about how other life experiences, including breast cancer, can cause PTSD.

similar to the five stages of grief i’ve shared on the blog last fall, the psychology field recognizes five stages of trauma: outcry, numbness and denial, intrusive re-experiencing, working through, and completion. these aren’t set in stone or necessarily experienced in this order. over the past 8 months, and even today, i can pinpoint going through, or being in, many of these stages. like when i’m frozen and unable to make even the smallest decision. or sitting in disbelief that this is my life and if i think about the reality too long or hard, a pandora’s box will open and i’ll disappear. or when i forget that i had chemotherapy, or cancer for that matter. or in the early mornings when i can’t sleep and instead march through the 5 months of chemo bit by bit in excruciating detail. or feel like many days, i’m levitating above myself just like watching a movie. i found this attached picture mike snapped during one of my infusions. i’m not recognizable.

this new field of post-traumatic growth is akin to the chinese character for crisis, which conveys a 2-fold message: one of danger and the other of hidden opportuity. it implies that through adversity, it’s possible to come out on the other side, sometimes stronger and more philosophical about life. it does not imply that trauma should be void of suffering, distress, and difficulties in even simple day to day activities. or put another way, just because you live through a trauma doesn’t mean you have to become socrates or superwoman.

post-traumatic growth can lead to a deep awareness of truths – truths that we all know are there but now actually have a more mature, ripe or relevant meaning, like: life is uncertain and ever-changing. it can also lead to facing, and denying, some deep-seated cultural mores of the west: the world is benevolent; we are invulnerable to misfortune; the world is controllable, predictable, and just. cancer has thrown all those out the window.

through trauma, becoming aware of these things can provoke changes in the way people talk about themselves, the way they feel about life and the way they go on to lead their lives.

this is largely what i feel like has been happening…cancer has redefined the familiar, removing the hooks on which i hung my identity. so i find myself packing and repacking my emotional luggage. searching for meaning and reauthoring the story of my life, at least in my own head. it reminds me of a favorite writer viktor frankl and his deeply touching words: “when we are no longer able to change a situation, we are challenged to change ourselves.”

i’ve been asked by many people what my big learn is, if i’m going to change careers, or make some kind of dramatic shift in life. surviving treatment has been enough of a big learn, that i can do it, have done it. as well as body image and what is beautiful is deeper. other stuff may come later. or it may not. again, post traumatic growth doesn’t have to be dramatic to be dramatic.

i keep coming back to these things, and writing helps me think through them. so you’re getting the unpolished drafts of my processing here (hopefully you don’t have the sentiment that was shared with me in a writing class years ago: “you can’t polish a turd.”).

in other news, i continue to get weekly fills of my temporary expander, and it’s almost the same size as my other breast (note: size not shape. the shape is almost like a football. ugh.). PT really helps calm the pec muscle down as it’s being stretched over the expander. i also had my regular infusion this week (it’s an IV for an hour or so every 3 weeks through november). the drug herceptin is technically chemo, but it’s like chemo 4.0 as it’s more targeted with fewer side effects. hence my hair coming in. we have to get echos every 3 months to make sure my heart continues to take herceptin well enough.

long road, long journey. as the scars turn to healing, light gets let in, slowly slowly. that’s the image i’ll leave you with on this rainy SF night. thanks to you all – and happy easter!
xom

i mentioned going on a retreat for young women with cancer this weekend. spending time together with these women was transformative. they absolutely got what i’ve been through without explanation (we could skip the surface-level conversations and go right to the core, quickly realizing that cancer patients at our best don’t waste time, mince words). they taught me things, revealing truths and fears and hilarities in their own experiences. some of the women are stage iv. some are thinking about end of life decisions. while others are out of treatment and hoping to lead a life that will help avoid reoccurrence. though if we learned anything from this experience, it’s that nothing is certain. we all know the statistics by heart.

one shared experience is how others, and each of us, have tried to pinpoint what caused this. as people, when we see a comrade come on hard times, our mind tries to compartmentalize what’s happening and reason out why the tragedy won’t happen to us.  for breast cancer, i can’t count how many times people asked, after sharing my diagnosis: do you have a family history? no, no family history. nope, no family history. ah no, no family history. i find myself now circumventing this to save that person’s breath by announcing, “i have breast cancer with no family history!!!” (as an aside, there is a spectacular book of comic sketches by the late miriam engelberg called, “cancer made me a shallower person.” i laughed out loud when reading it, because she started doing the exact same thing.). 

as miriam points out, what people want is reassurance that they’re safe.  i’ve experienced or heard about this coming across in other ways too, beyond the whole family history/genetic angle.  i can see wheels turning in people’s minds as they talk with me…internal monologues like, “oh, she doesn’t have a spiritual practice.” “oh, her diet is not as good as mine.” or, “she doesn’t work out as much as i do.” “she isn’t as balanced as i am.” there’s a smugness to it that i instantly recognize.  but i can’t stay upset about, because i’m sure i did it too, and will do it again. (side note: the genetic elements of cancer are persistently reported on, but the majority of breast cancer cases, and most other cancers too, are not related to family history. we just. don’t. know. shit. about why this is happening. my guess is the toxic soup we live in. but i digress).
one of the things i did in our downtime this weekend is chronicle a list of reasons why i think i got cancer. now rationally, i know this is preposterous. we’ll never understand why i got it.  why me? well, why not me? if you’re human, you’re subject to wins and losses. and, spoiler alert, it’s a matter of time before tragedy, upset, and grief find you. they found me earlier than anticipated. my project is to accept the cards i’ve been dealt. or not accept them but move around and past them. cancer is a great equalizer. 
but anyway, this list. some cancer patients don’t go through this self-blame. i have, in an intense way. maybe it’s part of the New Perfectionism that our American culture is obsessed with. whatever it is, i’m going to share it with you exactly how i wrote it in a stream of consciousness. and then i’m going to light it on fire in the backyard. if you read it, and think to yourself, “oh god, i do that.” well, as one of my retreat friends pointed out when i shared this list, “you were just living.” and living i was. and living you are.  as the retreat facilitator said of an african proverb, “when death finds you, make sure you’re alive.” trying to be perfect is boring anyway.

here goes:

• drinking too much growth-hormone-infused milk as a child and into my 20s
• binge drinking in high school and college
• eating too much cheese as an adult
• drinking unfiltered water from our 1908 pipes for 5 years
• flying too much and going through airport x-ray machines too much
• work stress and figure-my-life-out stress
• eating too many corn dogs in college
• not sleeping enough hours each night
• being on the pill for 15 years
• not having kids in my 20s
• not exercising every day
• enjoying bacon in my omelette during weekend brunch
• caving into hamburger cravings
• putting this weird cream on warts on my fingers for a year that one was supposed to stop if one got pregnant (upside: the warts went away)
• not using sulfate-free body products or aluminum-free deodorant until recent years
• not using bleach-free tampons
• dry cleaning work pants
• not having a religious practice

yeah, that’s right. holy shit, eh? it’s like the airing of grievances, but directed at myself. now it’s out there and we can move past it, or at least work on moving past it. 
a few last thoughts. i’ve been fascinated by comments that reflect on my strength going through this. yes the life-saving treatments negatively impact my quality of life, ironically. and they suck and are brutal and at times even barbaric (e.g., kill all your cells? check. lop off your breast? check.). but they are the best we have. and if you find yourself with a cancer diagnosis, you’d likely do the same exact thing. because the choice you’re making is to live or not live.

and speaking of living, my favorite moment of this past weekend was in an interview with an doctor who specializes in breast cancer and clinical advocacy (e.g., you hire her to stay on top of the research relevant to your case and advocate for certain things with your oncologist, when the oncologist’s incentives may not be aligned with your best interest. sad that her job is even necessary.).  one of the metastatic women in our group was given 2-4 years to live. the doctor responded to this statement, “excuse my french, but bullshit. cancer statistics are old. by the time the longitudinal data get compiled and peer reviewed and published, they are so irrelevant. there are new treatments coming online all the time that the old data don’t involve. don’t pay attention to any lifespan numbers that you’re given because they are, in fact, bullshit.” to see my friend’s eyes light up. it’s like she was given a new lease on life. and i was lucky to be there to witness it.

i got to spend time going over my case with this doctor. we talked a lot about whether or not to do radiation. she said i’m at the edge of knowledge, and at the annual breast cancer conferences, she’s seen people get close to fist-fights about this topic. they don’t know if it will help me or not. but her advice, echoed by all of the metastatic women: “take the path of least regret.” that settled it for me, so radiation it is. even if there’s a chance my interim implant could collapse. i start a 5 week course towards the end of april.

thanks, as always, and talk with you soon. in the meantime, yay for farnosh and marino on the healthy baby girl nazanin! and, for the image, pat, of driving a tractor to the post office. and sabine, for the beautiful hummingbird. enjoy the attached pic – my mom made this while visiting and clipping through our old magazines. kind of a cancer ransom note. i love it.

xom

ps the first and subsequent showers have been AMAZING!