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