shoes. and other things (e.g., why i write).

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.


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