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