welcome to my 100 day project! i’ll be writing a bit each day, sometimes on the blog, and sometimes just in my journal.
i’ve never been one to set new year’s resolutions. but this year, i learned about a different approach. it’s about choosing a word or set of words to describe how i most want to feel throughout 2016. the idea is that if i keep these words top of mind, i’ll orient my days, actions and thoughts towards things, people, and experiences that invoke the desired feelings. kind of like “if you build it, they will come.”
after rolling many around like a scrabble game in my head, i’ve landed on two words: alive and clear.
alive. i want to consider my breathing. to physically move each day. laugh and play. notice my grey hairs when they catch the light. hear my heartbeat between chapters of good books. surge adrenalin for respectable reasons–like traveling, being in nature, and doing things that put me just on my learning and doing edge. watch my hands move as they cook up nourishing california produce or work some magic with my right brain and the hot glue gun of a crafternoon.
clear. with my thinking and my actions. to see things for what they are and recognize what my sphere of control is (and is not), and in this, to tolerate complications. and when opportunities arise, understand why i’m saying “yes” or “no” to the invitation.
if you want to do a 100-day project, i’d love to have company. and if you have words that set your 2016 on the best path for you, that can serve as a loadstar and be rubbed as talisman for when you most need a reminder of our human ability to renew and set intentions, please share them here too.
as my poppo used to say, i wish you good health and happiness for 2016. because you’re right, that’s pretty much all there is to it.
I’ve started this post umpteen times in the past few months…only to stare at the blinking cursor. It’s not writer’s block. Nor is it that I have nothing to say. On the contrary, I have so much to say, too much to say, really. Some of the headings on my page of false starts have no apparent connection. When I typed them out, you might wonder whether I’ve either suffered a brain injury or am epically failing at a word association game: cat afraid of piano, book, hummingbirds, genetics and a smoking gun, MBA, bacon, roof, pink, menopause, altars and grief. Read into that what you will.
If I told you that I was too busy or too tired to write those posts, I would be piling on to the most boring discourse of our time (who isn’t busy and tired?). Instead, as my friend Laurie describes it, I haven’t created the opportunity to “drop down in a more contemplative space.” It’s true.
And then there’s this: every moment of every day, we are all receiving new waves of information. Someone once told me to not to let myself be moved by every wave that comes in, to find a firm place to stand and try not to react to each piece of information as it arrives. Makes good enough sense. However, I wonder if I’ve gone so far in that direction, that I’m not truly contemplating, even “feeling” any more (or maybe it’s the baby dose of Lexapro I’m on for the hot flashes keeping me numb? Maybe it’s the chemo and menopause giving me brain fog?).
I meet so many newly diagnosed women in my role in BAYS. To my complete surprise, my cancer experience seems so distant when I’m tending to their needs. I have compassion for them and am able to sit with their fears, but worry that I’ve become hardened. Or, that I’ve forgotten what those viscerally dark days felt like. And really, though, I am hardened and forgetful. Is my brain’s protective instinct, to block those memories out in order to cope and get out of bed in the morning, that overriding?
And, when is the last time that I’ve cried? Like truly shook with sobs and dripped snot? I cannot remember.
My biggest fear in all this is that I’m not being moved enough. That I had a crystal clear sense of who I was and where I was going in those viscerally dark days, and poof, it’s now gone or buried too deeply to retrieve.’
All cancer stories have heavy endings, regardless of the stage of disease. I now know that both facing an early stage cancer diagnosis, like I did, and then fighting off a reoccurrence or metastatic diagnosis for the rest of my life, like I am, is heavy. I also know that I’m riding this pendulum of love and grief, health and sickness; we all are. There is no perpetual balance to be attained. It’s only to be perpetually sought.
So being inspired by my friend Suleika, I’m going to embark on a 100 day project and it’s going to involve writing something each day, maybe something small in my journal or some bigger reflection or musing here on the blog, to continue teasing apart these feelings. It will start in January, when many good intentions start…but it won’t die like so many other resolutions about 30 days in. It will be a goalpost, and a gift to myself that I’m committing to drop down into that contemplative space. And by putting it out here in the world, that means I actually have to follow through.
A few other things to mention in a round up.
The Shivering in a Paper Gown book launch was fantastic, with over 100 people in attendance. Erin’s husband, Micah, read her piece, and Sarah’s mom, Shirley, read her piece. So powerful, so raw. And we got to repeat it at the LitCrawl festival too. And in part of the book publicity, Laurie and I got to be on public radio KPFA discussing the realities of life as young women with breast cancer. You can listen to the podcast here. I was also interviewed as a member of BAYS by a local news station, KRON 4, in response to the American Cancer Society’s new screening guidelines. And BAYS members were featured in a local news story about writing through trauma, as it’s so important this topic is getting noticed. These were the positives during October. I didn’t rant about Pinktober on the blog this year, yet noticed an uptick in news stories around the failure of the pink ribbon to do much of anything, except make breast cancer seem like a minor annoyance and as treatable as the common cold. So a friendly reminder to Think Before You Pink. And if you have the opportunity, advocate for any funds raised to go towards research for a cure and prevention, including toxic and chemical safety.
The LoveTwelve Calendar that I’m in is getting released later this month. That still feels like a dream.
My pictures from India will get sorted over Christmas, promise. I’m happy to share them because so many of you helped me get there. In fact, I get to host Thanksgiving with 2 of my dear friends and roommates from the trip.
If silly insurance contract negotiations get finalized, I will have another surgery as part of reconstruction in January. And then on Friday, I’m heading to Myanmar for a vacation with 5 close girlfriends. The country’s first democratic elections are happening now, so will be a fascinating time to travel there. We planned this trip over a year ago, with one of many goals to make sure I’m feeling alive. Funny how things work out sometimes.
dear friends,i’ve been dark on the blog, but it’s largely because all of my creative energy has been going into something special – the second bay area young survivors (BAYS) anthology, shivering in a paper gown.
i’ve had the incredible privilege to co-edit the anthology, pulling together 29 other authors and their moving, honest and raw styles. the book provides the real stories behind breast cancer. far from the trite and saccharine, the authors’ combination of dark humor, sass and solidarity throughout the challenges of a life-threatening disease shine through. the personal narrative stories beg the reader to step into the space that cancer has razed, to consider what is most beloved and cherished, and to ask what the sum of one’s life will be. as we see it, this anthology is relevant to cancer survivors and those who have gone through trauma. while the authors’ common bond is cancer, the stories cover the topics of: body image, parenting, spirituality, social support, emotional renewal, and end of life choices.
so, pick up the book, send me your feedback and thoughts, post a review on amazon, and just smile knowing that for every book you purchase, you’re providing a woman with breast cancer with a monthly support group service.
and while i have you, do you want to help BAYS meet our annual budget and fundraise, with just the literal click of a button? the sonoma west medical foundation named BAYS as their recipient if they win a pink glove dance competition for breast cancer awareness. just click on this link and vote for the sonoma west medical foundation (http://www.pinkglovedance.com/videos/2015-video-voting/non-bed-healthcarenon-health-organization/son…). you can vote every day with as many email addresses as you have! and please pass along to your networks. this would mean so much for us to win, to provide even more support groups, social and educational activities, and scholarships for our 350+ members.
to file in the “completely cool and unexpected” category, i’ve been selected as 1 of 12 women cancer survivors to be featured in the LoveTwelve pin-up calendar. and, the Bay Area Young Survivors (BAYS) is 1 of several nonprofits that will benefit from the calendar sales – incredible!
so why is this cool?
the whole premise of the nonprofit LoveTwelve is that the healing power of photography through make-believe and story-telling is more than just an image on a glossy page. while every woman’s cancer journey is different, in one critical respect, it is the same: cancer strips away a woman’s comfort and familiarity with her own body, making her feel less (or should i say that cancer stripped away my comfort and familiarity with my own body, making me feel less). so, each year, LoveTwelve invites twelve women from diverse backgrounds and circumstances to share our stories, pose in our annual vintage-inspired pin-up style calendar, and become Love, Twelve Bombshells.
“What is REAL?” the Velveteen Rabbit asked the Skin Horse one day.
“Real isn’t how you are made,” said the Skin Horse. “It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.” “Does it hurt?” asked the Velveteen Rabbit. “Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.” “Does it happen all at once, like being wound up,” he asked, “or bit by bit?” “It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand. But once you are Real you can’t become unreal again. It lasts for always.” ____________________________________________________________________________________________________ When Mike and I got married 4 years ago, we had several of our favorite passages framed to greet guests at the ceremony. This one made the cut. And over the past several months (years?), I keep asking myself, “What is real?” Did I make this life up? Did I really go to India, volunteer with tiny people, make an impact, get my heart crushed, and travel around the country alone, pushing my comfort zone? Did I really canoe in the Utah backcountry, kayak in Wyoming white water, eat street tacos in Mexico City, drink wine in Portugal, see Trombone Shorty at JazzFest in New Orleans, walk on a glacier in Iceland, listen to Evensong at St. Paul’s Cathedral in London, and pick agates on the beach in northern Haida Gwaii…with new and old friends? Did I really only see Mike for an hour on our 4th anniversary on May 28? Did I really share the most rewarding win in my professional career via the Marine Planning Partnership, after 10 years of being part of the slog? Did I really lose another friend, Heather, to this dreadful disease? Heather, who wore a superwomen cape while we paddled between towering cliffs and hiked among ancient Native American dwellings? Whose wife and children will carry forward with Heather’s light illuminating the way? Did I really gain 20 pounds this year and have to buy all new pants? Did I really care? Did I really start snoring this year from said weight gain and menopause (myth: stomach sleepers don’t snore)? Did my dad really get diagnosed with a second primary cancer in his bladder, on top of his metastatic renal cancer? Did they really prescribe him with weekly chemo and more IV chemo to come in July? Does my mom really get several hours of sleep each night? Did I really take on co-editing the next BAYS Anthology, rubbing my last brain cells together to make it work, sobbing upon reading some of the stories, and spilling my heart’s contents into my own stories? Did I really do this in honor of my dead friend Erin, after I took over her role as President of BAYS? Did my family really sell my mom’s childhood home, GG and Pop’s home, where we spent so much time just being my whole life, to a young family who will make their own memories? Did another friend really get diagnosed with metastatic breast cancer? And face whole brain radiation as a poor and poorer alternative for “healing”? Did I really have to make the harsh decision, based on new science, to keep on these monthly shots for another 2-3 years? Did all of these friends really bring the miracle of life into the world (the Nedell’s, the Chicago Martin’s, the Zebra’s, the Columbus Martin’s, the Moran’s, the Family-Resendez’s, the Harper’s)? Did it really hit me that this is what it’s all about?
I’m learning how to survive and in the process, how to live. But sometimes I have to touch my feet to the ground, feel the gravitational pull of the earth, tap my hands on my legs, close my eyes, notice the blood pulsing through my head, breath in to connect my body to my soul. Because this is REAL.
Expectations on myself, to figure it all out, to be present, to open my heart wider, to love and be loved. Burning those expectations in a fire that grew so hot it shattered glass and crashed to the ground.
Pure white, spring, rebirth, new year. Every color of the rainbow on my body, on my friends, and in the air on Hindu Holi.
The infinite space of my mind. The choked alleyways, thick with smells of chai and trash and onion, sounds of praying and honking and pots clanging, saris billowing behind in a parade of patterns.
A billion individuals, all moving, weaving in and out of traffic obstacles on foot, camels, elephants, horses and carriages, auto rickshaws, bicycles, motorcycles, buses, juggling every imaginable object—gas tanks, carpets, children, goats, chairs. Together, working in unison, in a symbiosis, forming a living and pulsing organism.
Sacred cows, robed and beaded and revered. A market with raw flesh hanging haphazardly.
Children, charcoal-ringed eyes, learning, looking for approval and a smile, running and laughing and cheering on the cricket game. Working in the fields, hawking flowers, tending to siblings, washing clothes, cooking for the family.
Feeling full. Of curry, friendship, growth, commonalities across cancers and across language and place and religion. Solitary, the only one to make my own decisions.
Taj Mahal, one of the seven wonders of the world. Awe-inspiring. The epitome of splendor, craftsmanship, and riches. Built out of love. It is a tomb, itself next to a Hindu crematorium. On a river awash with trash.
it’s time. i’m packing for india, frantically trying to find my rehydration salts and other tonics to keep me healthy, squeezing in a lot of work assignments and a quick trip to NYC, and crying. i lost another friend to breast cancer yesterday, sweet sweet Sarah. The last email we exchanged was about a dream where she was featured prominently, dancing. her email said: “I can’t wait til I can dress up and dance my butt off again!! Something to look forward to!” heart. broken. husband, 2 babies, too soon.
amidst the chaos at work yesterday, I looked over on my desk and bam, here was Gandhi staring back at me, tucked in between my tchotchkes, stuffed animals, business cards and other sundry desk items. how long has he been staring at me, waiting for me to notice? believe me, Gandhi, you have my attention now.
i’ll be spending my days with cancer survivors via the foundation for a fresh chapter and then teaching underadvantaged children through this nonprofit vidya. and i’m sure my heart will continue to be broken…but ultimately, what is and will be coming in and going out through these cracks and fissures is love.
i may write from india. or i may just save the stories until i can process them without the colorful cacophonous fire hose for the senses country that is mother india.
i wanted to share a piece i wrote after the True North Treks trip for now; they are using it for some grants applications in 2015, and i was happy to contribute my reflections. i imagine i’ll have a similar feelings again soon. thank you for all that you’ve done to help me get there. see you on the other side -xoxom
col·lec·tion
noun \kə-ˈlek-shən\
: the act of getting things from different places and bringing them together.
: a group of interesting or beautiful objects brought together.
Coming into the True North Treks week on Utah’s Green River, that’s what we were—a collection of cancer types from different places brought together. Blood, breast, salivary gland, testicle, brain, colon.
The week on the river created a different kind of collection though, something interesting and beautiful. The collection of what we are—canoers, campers, hikers, paddlers, .
As a young adult going through cancer, my aloneness has, at times, been deafening. I watch my friends move forward with the progression of their lives. They have children and success in their careers. They laugh with a lightness. They go to the gym. They think about life and the opportunities unfolding for them. Whereas me…I sit in an infusion room, getting my 100th blood draw. I wonder if my chemotherapy will leave me infertile. I question if I’ll be able to get another job given my health history. I get fatigued walking around the block. I walk with a heavy mind, thinking about death and the “what ifs” of my evolving cancer story.
Before cancer, I identified myself as a healthy, able-bodied young adult with no health challenges. Then with my cancer diagnosis, that view was turned upside down. And with it, so did others’ views of me. I was the bald one. The pallid one. I evoked pity, sad eyes peering down at me. And I felt it—the “thank God it’s not me.” And even the judgment, like I must have done something to get cancer, eaten/drank/lazy-ed my way into the diagnosis.
Back to the river though. There was none of that. Instead, there was recognition that I am not my disease. It doesn’t define me or consume me. And with each paddle stroke, those cobwebs of my diagnosis drifted away. Paddle. Daily pills. Paddle. Chemo brain. Paddle. Monthly shots. Paddle. Fear of metastasis. Paddle. Paddle. Paddle. Canoers, campers, paddlers, hikers.
On the Trek during our mindfulness exercises, we reflected on the many parallels between the river and our lives. We have no ultimate control of where we’re going, we can only orient ourselves in the direction we want to go and keep paddling. We carve new paths, sometimes bursting our banks in tangled ways and other times with the least resistance. We widen. We deepen. We can dry up, becoming a parched remnant of our former selves, waiting for a fresh storm to reawaken and rejuvenate us. We eddy out when we need to. But mostly, we keep moving forward. We’re never the same, and we’re never still. There are obstacles. They might leave scars, both visible and invisible. But usually around the bend, there are incredible views.
As Lynn Noel so aptly said: “The first river you paddle runs through the rest of your life. It bubbles up in pools and eddies to remind you who you are.”
The True North Treks week on the Green River did just this. It reminded me who I’m not and, more importantly, got me back into the flow and on the path of who I am.
i was just filling out a form for my mammogram next week. one of the questions asked me to “rate my overall health” with possible answers of “excellent. good. average. fair. poor.” i went to circle excellent and then caught myself. really? am i really excellent? frankly, no. but it got me thinking…how do i explain how i am? i wish i were excellent. i used to be excellent. i dream of being excellent. but i’m not excellent. (i checked average if you’re wondering).
it’s mind-numbing to go from being a very healthy – never sick person to a cancer person with lingering cancer side effects. my mind has a hard time processing it still.
i’m on the heels of both a neurologist and radiation oncologist appointment where each conducted thorough exams and ordered up more tests, including x-rays and a whole slough of bloodwork. the theories that they are putting forward are far-ranging, although none address all the symptoms (symptoms being back pain, arm and feet numbness, endless thirst, weight gain, fatigue, and so on):
· an electrolyte imbalance has triggered the neuropathy/numbness i had during chemo to reappear.
· diabetes brought on by the hormone therapy drugs i’m on, which dramatically alter my glucosamine metabolism.
· the surgery that rearranged my back causing muscular-skeletal complications (my physical therapy and acupuncturist are on board with this one too).
· carpal tunnel.
· spine misalignment butonly while in motion.
· thyroid imbalance.
· low calcium.
that there is a lot of what-ifs. all of them would suck in one way or another. and all of them don’t quite feel right…i’m in excellent health dammit!
my favorite quote from it: “Overall, we found that cancer survivors are often caught off guard by the lingering problems they experience after cancer treatment. In the wake of cancer, many survivors feel they have lost a sense of personal control, have reduced quality of life, and are frustrated that these problems are not sufficiently addressed within the medical care system,” said Dr. Burg.
whoever this dr. burg is, i love her.
speaking of gods and love, i leave for india in just over a month (february 26). i love all of you so much for helping me get there. i was walking the other day and the thought popped into my head that my grandparents gg and pop, wherever they are together, love that i’m going to india. that made me smile. i got the good warm tingles. and one last thought on love…well it’s related to love. i’ve recently been through more loss—women through BAYS, a 17 year old acquaintance to a rare lung cancer, and a dear friend with colon cancer being told there are no further viable treatment options. so, hold each other tightly. share your love. pause and look at the wonderful things around you.
i’ll leave you with the daily tweet from one of my favorite bloggers, lisa boncheck adams who is living with stave IV breast cancer: find a bit of beauty in the world today. Share it. if you can’t find it, create it. some days this may be hard to do. persevere.
i grew up next to railroad tracks. most of the time while i’m here, i don’t even notice the trains that speed by, rumbling the house on a regular schedule. when mike is in IL with me, he draws my attention to the trains again and i feel the house shake and the train horn echo in my belly. when i’m in SF or traveling, i wake up through the night when i hear a train passing…groggy with confusion and wonder as to where i am and what i’m doing.
i think of the train as a parallel to grief. sometimes it passes through you, by you, with you, only slightly observed. other times it shakes you, leaving you awake and confused.
as many of you already know, my grandpa, pop, died last friday. he was 93. when his wife GG died 4 years ago, he was ready to be with her then. he’s been patient. we miss him and marvel at the life he lived.
he’d often ask my mom, aunt katrina, or caregivers “why am i still here?” after we swallowed the heartbreak loaded in that question, the answers would come that at times, felt inexact. “God has other plans for you.” “You’re serving another purpose.” “Your work here isn’t done.” and so on…
recently, a new pastor at his church shared this answer with my family: “He’s still here to teach you all how to care for the dying.”
yes.
that got me thinking about what else he taught us all. there is so much in a life well-lived. here are some things that come to mind this week:
you’re never too old to find your voice. pop had to learn how to talk several times in his life—of course when he was little, but also after his aneurysm. and then again, he had to find his voice after GG died, to communicate what he needed and be the one now to share stories and memories.
beautiful penmanship is an art form.
being kind and polite and using manners takes little effort and has huge pay off. but the pay off isn’t the reason to do it. it’s simply the right thing to do to treat everyone as a person, deserving of respect and appreciation. even on his literal deathbed, in likely pain and discomfort, he was using manners. we all think of the nursing home as a place that no one wants to go to die. but the staff there was visibly upset at my grandpa’s downturn and mourned alongside us. it dawned on me that he was sweet to them, always saying “please” and “thank you.” and that is rare and special.
stories, especially painful or complex ones, can take awhile to surface. but once they’re out, they become gems to the listeners.
swinging in the yard with the sunshine on your face is therapy.
a firm handshake is memorable. even when you’re 93 and dying, a strong grip is never to be forgotten.
a nap goes a long way.
especially after a hard day on your feet.
warm food, a blanket tucked just right, and folgers warmed slightly also go a long way…along with stale cookies dunked in that folgers.
faith is powerful.
there is truth in what all the doctors tell us–keep physical, keep active. pop laid brick into his late 70’s. after taking many spills in his 90s, he still never broke a bone and points to all his physical fitness as the reason.
the kind of home to try and build is a welcoming one. it will create love and memories for more people than you realize.
being blind sucks. but with little adaptations and a family who tries to find you all the right resources, you can make it work and still find joy in different things. even climbing ladders to clean the gutters, although that may cause familial strife.
the value of letters exchanged among friends and family is incredible and leaves us with a treasure trove.
that grown men, the oldest of friends and life-long troublemakers together, in the winter of their lives, can hold hands with each other.
freckles are beautiful.
masonry in an incredible art form.
classic American literature is classic for good reason.
a person can truly deeply love another person, traverse many hardships together, and still truly deeply love that person. being open about love and grief is a powerful truth to share.
and, reuniting with your wife, our beloved GG, is pure heaven.
after pop died, my mom lamented that “no one knows our story.” that deep grief that comes with being parentless, grandparentless and being recognized as the family leader now, the patriarch or matriarch of it all. i can empathize in its overwhelming enormity.
my response to my mom, as it is just coming to me: the beautiful thread in all of this is that i’m your story. we’re your story. and we’re all pop’s story. it keeps unfolding with more to come.
a girl walks into a bar with her friend jamie. they drink and dance and meet an attractive guy named julian. he hits on them in a non-creepy way and compliments their dancing. they all reconnect later while getting a drink and strike up a conversation focused on careers. come to find out, he’s a doctor at ucsf. well what kind of doctor you might ask? a radiation oncologist. damn–that’s why you look so familiar, julian! you’ve seen my boobs!!!
true story. the girl is me, jamie is jamie, and julian is one of my radiation oncologists. and he has definitely seen my boobs and even touched them, marveling at my different incisions, and laughing that for exercise, i shoot baskets (do you remember that story? mike about fell out of his chair when i said i shot baskets…and he did again when i recounted the story of meeting julian).
cut to julian being mortified, melting into a puddle on the floor of ye olde beauty bar while michael jackson plays on the remix and the disco ball spins and santacon santas run rampant around us. “you can’t tell dr. fowble! oh my god, i’m so embarrassed. seriously? i am hitting on a patient. oh jeez. i gotta go. i gotta get out of here.” and so on. poor julian. most of his patients are 65+, so why would he confuse me for one of them out on a saturday night dancing? which brings me to my second story, entitled: gout.
what do you get when you cross menopause with vitamin c supplements and a persistent trail of red meat and red wine given my lack of will power around the holidays and a certain husband’s birthday? gout muthafockas! i mean, seriously, what next? WHAT NEXT?! maybe the black lung papa.
oh happy day!
my big toe joints have been swollen and red, on like level 7 shooting pain here and there for the last month, even waking me up at night. after several consultations with my acupuncturist and some mad googling, we put it together. so what’s a girl to do? not drink alcohol and instead consume a ton of cherry juice until i get back to the doctors in january? suuurrreeeeeee. i’ll consume that cherry juice with some mulled red wine. it’s the holidays, harry. my will power is out the window, and hey, the alcohol will numb the pain, right? i have to laugh at it all. ha ha ha. (that’s me laughing).
the good news is…i got hit on (upward tone / question mark?). and i’m going to india and you are all amazing and have contributed so much money. and i get to eat 10 different kinds of christmas cookies made by my mom and spend christmas with whiz and mike in illinois then with family and friends in cleveland right afterwards. and i’m alive. so truly, it is a happy day.
over and out for now. please send extra prayers to my dad, grandpa and friend sarah as they all enter new and different challenges in their lives. and, congrats to carrie and kurt on the birth of braxton and ben, true christmas miracles.
keeping abreast | keeping a breast 