bonds & tamoxifen

Sometimes the only way to end a week arguing with doctors about your surgery date is to share a bottle of really good wine with someone who you may never have become friends with if it weren’t for cancer. These people come into your life suddenly and without warning, becoming people who’s friendship is deeply and instantly and awesomely important. Cancer bonds. They aren’t like regular bonds, they are a thousand times stronger and forged in the instant that two people inhabiting the same space utter, together, that there is/was cancer lurking. Cancer can make bonds risky, because the possibility that one or both of you could perish in the near future is in your face real, and is basically the reason you can bond so quickly, because you share an understanding of this absolutely insane, totally inconceivable to everyone else reality. And so last night I went out with my cancer-bonded friend Julia. She is one of the ones who gets it. She can pour wine and lament the randomness and toast the end of chemo in a single breath. I am grateful.

The kind of information these cancer friends have is invaluable. A common side effect of chemo, and of hormone therapy- read, tamoxifen- is hot flashes. I am unsure whether I have had these or not. Julia informed me hot flashes “kind of feel like a hot yoga rush.”Because she agrees with me that seven weeks is too long to wait from the end of chemo until my surgery, Dr. G. prescribed me tamoxifen early. Tamoxifen is a drug that will block the production of estrogen in my body. For the next ten years. Ten years. The first night I took it, I was hot. So hot.

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So now I’m wearing tank tops in the rain, and swallowing a drug that will put me in false menopause for ten years, and taking a lot of vitamin D in hopes of saving my bones from osteoporosis. Yah, that’s right. A four page laundry list of side effects, including blood clots, weakened bones, joint pain, swollen hands, hot flashes, and so much more was given to me when I picked up my three-month supply of this drug. It has a very low compliance rate- 25% of folks choose not to take the estrogen blocker, preferring to take their chances at a life well lived with estrogen. For three days, I’ve complied. I could write an entire blog post on tamoxifen, but mostly I feel ambivalence. I’m afraid of having a recurrence, certainly, and so I swallow the pill, and I wonder how each tiny white tablet will wreck havoc inside of my system. How long will it take, and for what kind of uncertainty? People have recurrences, on and off tamoxifen. It lowers rate of recurrence by 10%. Percents only matter when you’re on the right side, though. Ambivalence, indeed.

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Because she agrees with me that seven weeks is too long to wait from the end of chemo until my surgery, Dr. G. prescribed me tamoxifen early. Tamoxifen is a drug that will block the production of estrogen in my body. For the next ten years. Ten years. The first night I took it, I was hot. So hot. Julia informed me hot flashes “kind of feel like a hot yoga rush.” So now I’m wearing tank tops in the rain, and swallowing a drug that will put me in false menopause for ten years, and taking a lot of vitamin D in hopes of saving my bones from osteoporosis. Yah, that’s right. A four page laundry list of side effects, including blood clots, weakened bones, joint pain, swollen hands, hot flashes, and so much more was given to me when I picked up my three-month supply of this drug. It has a very low compliance rate- 25% of folks choose not to take the estrogen blocker, preferring to take their chances at a life well lived with estrogen. For three days, I’ve complied. I could write an entire blog post on tamoxifen, but mostly I feel ambivalence. I’m afraid of having a recurrence, certainly, and so I swallow the pill, and I wonder how each tiny white tablet will wreck havoc inside of my system. How long will it take, and for what kind of uncertainty? People have recurrences, on and off tamoxifen. It lowers rate of recurrence by 10%. Percents only matter when you’re on the right side, though. Hard to know. And so I swallow.

Ambivalence, indeed.

 

 

 

being in relation & being outside the contours

“Why are you doing that?”

“Breast feeding isn’t all its chalked up to be. Trust me.”

Sometimes, the exercise study can be like a cocoon. Safe. Funny. Silly. A top secret gym with frosted windows. A place to exchange notes on mastectomy. A place to talk about tamoxifen. A place to be with other women who have breast cancer.Today, I went to coffee with some of them, trying to reach out beyond the normal younger few I congregate with. In the chatter, someone asked why I was having a mastectomy. Why, she implored, are you doing that? While it seems like that last place my choices should policed, it isn’t the first time- and this policing of my choices by other women with breast cancer is exactly why I congregate only with the younger few. I didn’t want to have to justify my decisions to this woman. Another followed up by stringing together an opinion about keeping the other breast to breast feed, peering out over her glasses and telling me “breast feeding isn’t all its chalked up to be. Trust me.” How different it would have been, if she had said, “For me, breast feeding wasn’t all it was chalked up to be. I struggled because….”

I wanted to shut them out. I wanted to go back to talking with the others about vegan mac’n’cheese and fake eyelashes. Someone piped up, explaining, justifying for me. But still. I didn’t go to lunch. There is an ache in my belly too deep. Of all people, these are the ones who should understand the way cancer severs choices, obliterates options, narrows possibilities. Of all people.

We do not live in each others’ bodies. We don’t get to extract our experiences and explain life to another, each of us has such radically unique experiences that attempting to compare, contrast, explain away is not productive, but rather, painful. I find that people all around me lately are drawing lines of comparison between their own experiences and my cancer experiences, which is preposterous- even if they have cancer! Sorry dudes and dudettes, but you don’t get to do that. It isn’t cool. I was so grateful for A and T, sitting around the table, standing up for my decisions. Those are the kind of people I want to surround myself with, the kind of people who center themselves in their own experiences in relation to me, not in comparison.

Being in relation. It means sitting with the unknown. I worked out next to a woman who said to me today, in relation to my blog, ‘some of the things, I was like, oh, yah, totally, and other things, I was like wow, that’s so different than my experience.’ I was so grateful at her recognition that we all have such nuanced experiences. Being in relation, not in comparison, means grasping at your own mis/understanding without using it to explain or justify or enforce. Being in relation isn’t about what you know of your own experience breast feeding, having a surgery, getting cancer, going into mastectomy. Being in relation is about knowing that what you know about any of these things is your own, and being in relation is about knowing that someone else could know something totally different, could want to grow their own knowing, could have a radically different experience than you. Being in relation is gentle, thoughtful, eyes wide full, curious. Being in relation is being open to surprise, thinking quietly, embodying namaste to the other.

But the problem, of course, is that being in relation has limits.

Community building- which I think the exercise study fosters for some- has edges. By definition, community building is about exclusion. It’s a community because someone is outside of the contours, and inside there is a familiarity. Today, I was outside of the contours of this breast cancer community. The lines were drawn, as they always are, in the off-handed comments no one remembers and the way shoulders shrug and the lifted eye brows. I was so clearly, so solidly, outside of the lines.

“Why are you doing that?”

“Breast feeding isn’t all its chalked up to be. Trust me.”

Trust me, she said. Trust me, and maybe you can come inside the contours of this community. Why are you doing that, she asked. Explain to me, she asked, and her painted-on-eyebrow never left its raised position. The contours of what fits, how it fits, who fits were crystallized in those moments. My choices, my body, me created a fissure to wide to hold the community gently together. Inside. Outside. Community. This isn’t mine.

“Why are you doing that?”

“Breast feeding isn’t all its chalked up to be. Trust me.”

My communities are fractured and reflected in facebook chats with people I only know through their digital presence, in epic text message conversations and coffee dates, on twitter and in chemo rooms when I breathe a sigh of relief to see someone sitting in the chair across from me who would be my friend in real life. 

I’m not sure I’d know these women otherwise. Some of them, I might. It’s not even really about age, but lifestyle. Some of us share particular ideas and dreams and experiences and habits. I’m excited I get to celebrate the end of chemo with my yoga-cancer-buddy. Her life has parallels with my own, there’s something there beyond the rapid division of cells. But today, as is often the case in groups of women with breast cancer, the lines were so clearly drawn, and I was outside of them.

 

 

moments

Sammy called me this morning, frantic. The car was missing. Last night, I parked it on the corner. This morning, it was gone. He needed to go to work. How had our one-year old Prius vanished? We had four phone calls in a five minute period. All four were haphazard, fragmented, incomplete. I straddled my bike on the corner of Broadway and Ash, and dialed the impound lot. Sammy called back. I disconnected the impound lot. No car, frantic Sammy on the line. I was the one who used the car last. Where was it?

You know that kind of moment? Frantic, scared, incredulous, the moment when you need the world to stop so you can right everything immediately before you lost your brand new car right when you have a seventeen page to-do list? Cancer is like that, but the moment doesn’t right itself. Instead the world spins in slow-motion while you stand there and get dizzingly sick from chemo, and you are trying to hear but you are too tired, and you are straddling your bike  but you can’t hold on because your hands are swollen as f*ck and tender and blistering, and there is someone offering you three different flavors of a re-hydration drink but you can’t quite reach them, and your pounding heart is seventeen hundred times louder than the very busy intersection. The moment lasts six months.

Then, after being in this moment for six months, you can clip your helmet back on and start peddling, and at least get to the next intersection, where the crossing guard is Dr. Yoga-Surgeon. It will probably be the worst intersection because it is the intersection at which you will volunteer your arm to a nurse who will wiggle a needle into your vein even though you detest needles, and you will wake up hours later after Dr. Yoga-Surgeon amputates a body part that is intimately a part of how you understand your entire way of being in the world. Dr. Yoga-Surgeon will leave that body part in a specimen jar in a drawer at the cancer agency and it will never feel pleasure, it will never go topless in the sunshine, it will never overflow out of a push-up bra, it will never be whistled at by an inappropriate someone, it will never feed a baby, it will never bounce around in a built-in-bra tank top, it will never shimmy in between your shoulders (ok it never did that anyway, but now it really won’t). It will never do those things ever again because it will be in a specimen jar in formaldehyde at the cancer agency and the top of the jar will probably gather dust as it sits in its spot on a shelf with all the other cancerous, amputated breasts who’s owners traveled this particular and harrowing path.

This intersection will be worse, but before you even get there you find yourself weaving through a gauntlet someone called a street. It is a gauntlet. Broken glass pops your tires. You weave through cars and you carry in your backpack a prescription for a medication that will cause false menopause and block all estrogen in your body, all folded up with your list of dissertation references that somehow still has a thousand errors. The medicine will make your bones weak and your belly flabby. You haven’t fallen off your bike in years, but you skin your knees and your chin and your left elbow when you fall off again and again and again and again. Even though all the knobby points of your body are bloodied from the number of times they have scraped asphalt, there’s some really warped cheerleaders silently screaming about positivity, and you could care less because you think they must be dead cheerleaders come back from the worst Halloween you can remember. Their costumes are terrible. The phone rings, and you ride one-handed while listening to your doctors’ secretary explain something that makes no sense. You wonder about gender and why you never realized how much you loved your breasts. You pause on the curb to download medical articles so you can explain to your doctors’ secretary, so she can explain to your doctor, why she makes no sense. The clasp on your helmet clatters to the ground and that’s the loudest sound you hear even though there are trucks blowing carcinogens into a cloud right in front of you. You begin emailing with your cancer-buddy about the media-archive-storytelling-young-cancer-project you need to do more than you need to breathe, and in rapid-fire style you hammer out a goal broader than the sky itself. What kind of activism would it take, you wonder, to throw the trucks that make clouds of carcinogens off the edge of the world? The amputation intersection is a mirage in the distance, and you cannot tell how close or how far the amputation intersection is from where you straddle your bike, you only know that like you desperately need to start your media-archive-storytelling-young-cancer-project, you  desperately need Dr. Yoga-Surgeon’s secretary to change the number of days until the mirage is closer.  It would be ironic, asking her to move the mirage, if you had time to think about what a mirage is. But meaning is lost, vocabulary woefully insufficient, language has never seemed more destitute. The feminists/poststructuralists/queer theorists/critical decolonial thought producers had better get to making up some words with slashes and dashes and lots of letters in between, new words, words we’ve never heard of, sounds that have yet to roll around in our mouths, but probably we will also have to make up a whole new alphabet for this one. Language fails. Metaphor fails. Mirage fails. This is these days between chemo and surgery. The only respite is yoga. The bike isn’t allowed inside the yoga studio, but Dr. Yoga-Surgeon is there, and so you know it’s not a dream.

In case you were wondering, the car was moved, towed to the other side of the street. Thank you, tow-truck, for not towing to the impound lot. I left it too close to the driveway. That worked out a little better than cancer.

 

because it’s ridiculous

Because it’s so ridiculous, I have to tell this story.

The other evening, I was meeting someone for dinner. I had a crazy day, so I went to half a yoga class. I left, and found myself showering with one other woman who also snuck out early. She was super chatty about the heat and the teacher and the sweat and….

She asked why I was bald. I explained I have breast cancer and she gasped in horror that “You are so young!” So far, totally normal in my world. That’s what everyone says. What she did next was not what everyone does.

Butt-naked, she stood in that locker room and she asked me to feel her breasts for any lumps. “Ohmygod,” she gasped, “you must feel mine and see if I have any!” And she was totally serious, offering me her two giant breasts for all the feeling up I wanted.

I, of course, was awkward. Here was this woman, offering me her two giant breasts, and she was naked, and I was wrapped in a towel, and I was late for a dinner and there was no one in the locker room and also, I was bald, which started the whole thing.

When I turned down the opportunity to rub little circles on her breasts while we stood in the locker room, she then proceeded to stand with one leg up on the bench and give herself a breast exam, asking for my tips and tricks along the way. Because I have so many tips and tricks. The only time I did a breast exam, I found a lump. I’m more likely horribly bad luck.

Oh, it was weird. Oh, it was awkward. Oh, I cannot stop laughing because it is just beyond insane. Cracks me up every time. This is my life people. This really, actually happened to me. And it is just hilarious.

 

 

the view from here

Community & Care

I assume that there was a time when the doctor lived down the road and everyone knew each other. I read about these times in “Little House on the Prairie” and other books that my brother and I relegated to the category “olden days.” I suppose I’ve experienced these places and ways of being in community, too- in Latin America I have lived many places where the doctor lives down the road (sometimes in a giant purple house). I don’t wish to romanticize this kind of small-town way of knowing and being, and nor do I want to consider small-town antiquated, old, not modern, or backwards, but rather I want to notice something.

My plastic surgeon goes to my yoga studio. It’s very clear we have the same favorite teacher because I always see her at this teachers’ class. The first time I saw her there, I was unsure it was her. I wondered. I stared. I wondered if she had a sister or a twin who looked alike. I wondered if I was mistaken, having only met her once. But at the end of the class, she touched my shoulder and said hello. This was definitely my plastic surgeon. I see her now, regularly, at yoga. We exchange a hello, sometimes a few words or a conversation.

It is shocking, even to me, how much more willing I am to ask questions, divulge information, and discuss options with this doctor- simply because I see her outside of her office on a regular basis! She is part of a wider yoga community, and knowing I’ll see her in itty-bitty shorts sweating gallons takes the edge off of the power dynamic that we naturally experience as doctor and patient. I think she feels it too, and she is one of the only doctors who will ask me if I have read X article or researched X option, which is pretty awesome because most of the time, when I tell a doctor I have read X article and researched X option, they quickly correct me, regale me with the related research, and move on, knowing full well they know more than I do. But the plastic surgeon doesn’t do that. She knows I have researched, she knows I know my body, and she knows she’ll see me at yoga. She’s still certainly the expert in the room, and I’m still squarely the patient, but the dynamic is different. Sure, we could chalk up the difference to being about oncology and critical chemotherapy treatments versus less-critical reconstruction with multiple functional options. But still. There’s something more there we would be missing, if we dismissed it that way. Besides, I’m still more willing to engage this doctor in conversations about all kinds of breast cancer related things than I am most of my other very capable, very awesome doctors. Our dynamic makes me wonder about how our communities are connected, and what it would mean to invest in particular communities where doctors and patients know each other, practice yoga together, attend the symphony together or bump into each other at talks and conferences. And so I wonder- what might it take to connect patients and doctors outside the examination room or before they meet in the OR? And would it matter, in terms of care, at all?

yes, chemo is over.

Yes, my chemo is over. Yes, that is great. I’m glad I’m done. And I’m not really “celebrating.” The people I can “celebrate” with are the other people who have had chemo. They grasp the muted, warped celebratory nature of the end of chemo. It’s a sigh of relief, but we all know it’s not really over. It’s over for me, but my cancerbuddy is stuck at the Cancer Agency, while they pump her full of poison and try desperately to save her life. It’s over for today, but there will always be a lurking fear of recurrence or worry of a new cancer. So sure, I look forward to toasting to the end of chemo with my yoga-teacher-breast-cancer-buddy. I know that the other young people I know at Callanish who have/had cancer will totally get the complexity. I can chat with my mentor about the pending boob amputation and feel secure in her recognizing and remembering how it felt for her. I can, and do, easily reach out to the people who can relate, and I know that I am surrounded by these kinds of supportive people, spaces, and communities. Though I am awesomely supported, it doesn’t make me want to celebrate with any kind of real gusto. Chemo is over, but my cloudy family history hovers, marred by the tumultuous relationship between my aunt, my uncle, and my father. Chemo is over, but involuntary body modification that will reorganize how I think about my body, my gender, my sexuality looms.  Chemo is over, but tamoxifen- the drug that will block estrogen production in my body- has yet even to begin. It’s over but not really.

So chemo is over. I want to lay in the sun forever. I want to  jump in the puddles and feel the rain seep into the toes of my running shoes. I want to stop listening to the pointless chatter. I want to know what matters. It just feels like so much more matters, now. When I say more, I don’t literally mean, more. I mean bigger, I mean more expansive, I mean wider communities. It seems like what matters is not how much money you can save or spend or lose, but rather, what matters is how you use your resources to create the life you desire, to mold your home into somewhere warm and safe and comforting, to connect to the communities around you in vibrant and creative and intellectual ways. So I urge you to do what makes you feel good, to try new things and places and people without worrying what they think or how you will fare, to get outside and move. And then, to think about what matters. To make a difference in the world about something that actually matters, in your own small and joyful and stubborn ways.

 

 

 

something slightly off

There is something slightly off about this most recent breast cancer “post” everyone is sharing on Facebook. You know the one, this one. It’s about a woman who’s ten or so friends shaved their heads bald for and surprised her, all at once. I can’t quite exactly pin my finger on why the constant sharing of this video is unnerving, but every time I see it on Facebook I kind of wrinkle up my nose and roll my eyes.

Noticing the amount of eye-rolling I was doing every time a Facebook friend shared this thing, I started to wonder if I was jealous? Was I jealous because my friends didn’t all shave their heads at once for me? No, not really. It might actually be kind of weird if my friends did that. Or maybe not, maybe it’d be totally awesome. I don’t know. That wasn’t it, though, the reason I was so annoyed. Someone told me people sometimes shave their heads to be “in solidarity.” Then I remembered a conversation I had with one of my closest friends, about solidarity. That was it.

Gerdi’s friends say they realized that shaving their heads was the least they could do, and that they learned hair didn’t matter. Umm. Ok. I wonder how actually shaving your head actually does something for Gerdi, or for breast cancer? Enter this whole “solidarity” thing. Of course, shaving their heads doesn’t make them “feel” what Gerdi feels, and I imagine they know that. So, they were in solidarity.

Except Gerdi wasn’t there with them. The video shows them shaving their heads, to later surprise her. They were in solidarity but they forgot to get Gerdi’s consent to be in solidarity with her. The head-shaving was about them, not about their friend Gerdi with breast cancer.

Being in solidarity with someone or with a community requires partnership. Conversation. Ongoing consent.You don’t get to just pick someone or some cause or something and be in solidarity. It’s an ongoing, negotiated relationship with the people/person/thing/community with which you are in solidarity. I am certain we have feminists of color and those writing about advocacy and ally-ship to look to for advice, insight, scholarship, experience about this particular relationship. Solidarity isn’t something you get to do to someone else, especially when you claim solidarity without discussing, including, negotiating with who ever you are in solidarity with, in an ongoing way. You don’t get to decide to be in solidarity: you get invited to participate precisely because you can check your own privilege and own up to the times you f*ck up, because you will, and that is OK. Being in solidarity is a privilege, and claiming solidarity without a negotiated relationship is seriously disempowering, invisible-izing, and even hurtful to the community of people you are “in solidarity” with.

The sharing and re-sharing of this video seems to say, “I am sharing this, and this is my act of solidarity, too.” And yet, no one asked. Sharing doesn’t imply actual engagement with breast cancer, or those of us who have it. It merely is a contribution to an over-saturated communicative environment where sharing this video shows a kind of awareness, a softness, a sweet hopefulness about cancer. Ya know? And this thing gets shared without any relationship to the actual community of people living with breast cancer. When someone shares this video, they are situated as caring, aware, oh gawd, even “in solidarity.” They get to be part of/in solidarity with/sympathetic to the cancer community, and sharing lets you do it without any engagement with the actual cancer community. That is what irks me so about this video and the way it is traveling rapidly through my networks.

So again, it’s not the video. It’s the way it moves. And if you want to be in solidarity with someone, anyone, something, somewhere, some issue, then get close to that community, know that community, ask to support that community, deal with f*cks ups between yourself and that community, actually engage with that community.

And then maybe you can be in solidarity.

bo/ald

Today, I was bald. Bald in the street. Bald shopping. Bald eating a doughnut. Bald drinking early gray tea and gossiping with my friend A. Bald picking up an iPhone case that doesn’t fit my iPhone from FedEx. The thing about being bald? It’s bold. It’s brave.

Also, I did bald karaoke. I mean, I didn’t actually get to sing bald, because the bar was packed, but I was at a karaoke bar birthday party and I was bald and it was kind of awesome.

The other day, I was in yoga. There was a bald man practicing next to me. I was wearing a scarf. And I was like, since when do men have a monopoly on bald? I mean, really. So I took my scarf off, and I was bald, and I touched my forehead to my knee in standing head to knee like a bad-ass. Which of course, led to me going bald-shopping, bald-biking, and bald-doughnut-eating.

It occurs to me that we ought to think more carefully about our days. About how we are in the world. About how we express our love and care and hope and fear and surprise. The chorus of an old campfire song comes to mind:
On the loose to climb a mountain, // On the loose where I am free. // On the loose to live my life, // The way I think my life should be. // For I’ve only got a moment, // And a whole world yet to see, // And I’ll be searching for tomorrow, on the loose.

It’s true. We’ve only got a moment, and the whole yet to see. What part of the world will you see? We live in a world vast enough, unknown enough, big enough that an entire commercial jet can vanish, and we can not know where it is, we can not know how to find it. There is so much we do not know. We live in a world, where sometimes, cells can morph and multiply uncontrollably, and we do not know how, or why, or how to fix it, or if we’ve fixed it. We live in a world where it seems like we can know everything, but really, there is such a vastness out there that we do not know, that we cannot know.

And so it makes sense, given that we play on the terrain of so much not yet known, to be bold. To live our lives “the way I think my life should be” because after all, “I’ve only got a moment, and a whole world yet to see.” Today, I was bald, and people looked. I could see it as their eyes squinted, and I could have captioned their thought bubble “Does she have cancer? Did she just shave her head? Why would you do that if you didn’t have cancer? But she’s so young. Could she have cancer?” And yet, all I can think is, who cares about their stupid squinty-eyed thought bubble? For I’ve only got a moment, and a whole world yet to see….

Being bald feels fearless. It feels strong. It feels b<o/a>ld, with an appropriate possibility for slashes and dashes mid-word. It feels unapologetic. Maybe I should do it more often. After all, we’ve only got a moment, and we just don’t know how long our moments will last.

the view from here

***does anyone know why this post is showing in italics? I can’t change it! so annoying!

I think I will be OK after this. I have one chemo left, a unilateral mastectomy shortly there after, and in a few years, a prophylactic mastectomy for the other breast. Sure, we can’t know what the future holds. But mostly, life just continues.

Lots of people I’ve met in cancerland have gotten crappy news lately. Life-changing news. News that startles. News that takes your breath away.

And what I realize today is that we are all trying precariously to balance and we are all in such different situations and all we can do is ground ourselves in what is right and true and real for each of us, and hold our friends’ hands really tight when things are really wobbly.

So tonight, I’m grounding in what I know to be real and true and good for me: I am getting through this, I have responded well to the treatment, I will have a surgery, and then I should be OK. My cancer seems to be manageable, at least in the present. I have been really supported by the most awesome family and friends and my the best Sammy ever. It’s been about four months of the strangest journey ever, and its not over yet, but there is a light at the end of the tunnel. There’s still another chemo and many days of bone pain and not being able to sleep for lack of being able to be still. Then of course, the mastectomy. And then the dreaded tamoxifen I hear horror stories about at every turn, for ten years. But we’re still trucking. And it’s important to recognize that things are really going fairly OK. I mean as OK as they can when things are going in cancerland.

And so that is why it is important for me to ground in what it is real for me, and open my arms really wide to my peers, and do whatever I can to make sure that I see things about cancer- treatments, politics, cultures, worlds- change.

So here’s some photos from the past many weeks.