The kids didn’t want to go march with me on Sunday, so J took them out and I went with some friends. To rally at Battery Park against the latest evil pen-stroke.
People espouse resistance like it is easy. It hasn’t been a month yet. It doesn’t feel easy. What it does feel, though, is necessary. Essential. I have heard from friends abroad who are sad, horrified, sick at what this country is going through. Even if they live in countries that have seen more than their share of bad governments. Somehow they thought we were immune. Somehow we thought we were.
America was a big experiment. The experiment was designed thoughtfully and somehow, with plenty of mishaps, it lasted 241 years before a bunch of louts came in to smash all the glassware they could find in the lab. That’s the image that came to mind today, as I walked through the snow.
I’m having trouble with the fact that as things unravel on a national plane, for me they are going well. My health is on an even keel, and I’m making a lot of connections that are helping me expand my fledgling translation business. Last night and today, I spent some time networking, which for me centers around finding the most enjoyable people in the room to talk to, whether or not they can “help” me. I’m an introvert at heart (when I’m not on Decadron) so spending extended periods of time meeting new people exhausts me, spiritually. But I am excited to keep making progress, making contacts, and eventually even make money.
Add my political exhaustion to my spiritual exhaustion and it’s a wonder I can get out of bed. (I always find a reason, though. Sometimes the sole reason is breakfast.)
I didn’t want to post today. Hell, I barely even wanted to get out of bed. I know many of you feel the same way. And some do not. However you feel, you should know that so many people had hoped this day wouldn’t or couldn’t arrive, that even our nation’s laws might somehow prevent it… and then the day arrived anyway.
This post has nothing to do with my health.
I was just out doing errands and the hush over my little corner of the city was absolute. It feels empty. It feels like it did after the election, and after September 11, although the fear of imminent physical danger is perhaps not as acute.
After September 11, in the climate of fear and heartsick grief that permeated NYC, I happened upon a book on my shelf that I hadn’t read before, and it was just the right size to carry in my purse, so I took it with me on every subway ride. It was Robinson Crusoe. I had bought it at some point with a view toward self-improvement via filling in the literary gaps I created by not majoring in English.
It was a strange choice. But I found solace in it while traveling underground. A narrative of post-traumatic stress and shattering loss that spoke to me deeply:
I walked about on the shore lifting up my hands, and my whole being, as I may say, wrapped up in a contemplation of my deliverance; making a thousand gestures and motions, which I cannot describe; reflecting upon all my comrades that were drowned, and that there should not be one soul saved but myself; for, as for them, I never saw them afterwards, or any sign of them, except three of their hats, one cap, and two shoes that were not fellows. (from Chapter 3, “Wrecked on a Desert Island”)
After a particularly stressful time of waiting for scan results in July 2015, I visited the Morgan Library, and J and I gawked at the treasures on display there. One of the emphases of the collection was editions of Robinson Crusoe, in different formats, editions, and languages. Several shelves of it. It was good to be reminded of it again.
I wasn’t intending to find a companion read to the post-election, but then the library recently notified me that a digital copy of a book I’d requested was finally available. I downloaded it and am reading it on my phone, which is even more portable than that pocket edition of Robinson Crusoe. It is also aimed at filling a knowledge gap, this time of American history. It is Bury My Heart At Wounded Knee, the story of the opening of the American West from the perspective of the Indian peoples who were massacred and displaced by it, starting with Columbus.
The massacres begin immediately. There are brief, sometimes hopeful alliances which are always shattered by wanton greed and propped up by Manifest Destiny. There are tests of endurance which boggle the mind. I’m still at the very beginning of the book, but I am already astonished and inspired by the determined survival of Manuelito, the Navajo war chief who succeeded in resisting military oppression and the removal of his people via forced march to the Bosque Redondo reservation. After several years, a surrender takes place, a treaty is signed (Manuelito is one of the signers), and the Navajo are allowed to return to their lands. This is the haunting image of Manuelito after resisting surrender to the military as long as possible:
… Manuelito limped into Fort Wingate with twenty-three beaten warriors and surrendered. They were all in rags, their bodies emaciated. They still wore leather bands on their wrists for protection from the slaps of bowstrings, but they had no war bows, no arrows. One of Manuelito’s arms hung useless at his side from a wound. A short time later [Chief] Barboncito came in with twenty-one followers and surrendered for the second time. Now there were no more war chiefs. (Chapter Two, “The Long Walk of the Navahos”)
I worry about fatigue and whiplash. I worry about sustained resistance to the things that outrage us, over the long term. There is a lot to worry about, and it feels difficult to situate myself, so I’ll focus on what I know and how that can be projected and emanate out into wider spheres. Among so many, many things:
My health is important – Access to quality healthcare for all is important. I am an immigrant – We must continue to value immigrants in our nation. Language(s) and culture are important to me – Culture must remain an American value. Peace, security and prosperity are important. I have reasonable doubts these values are prized by, and can be achieved by, a narcissistic kleptocrat.
America, from today we now star in a reality show of our own making. We must try however we can to change the script.
MRI day today. Usually I start a post before the fact, and then do some post-scan editing with the end of the story. Perhaps today I’ll just leave everything as is. Just registered. They tell me they are running on schedule.
I think I’m officially in the translation biz now. That seemed to confirm itself yesterday, when I was in the midst of working for free on a sample of a memoir by a noted singer (I won’t say any more unless I get the gig), and my email served up a new offer of paid work from the last client I did something for in December. I wouldn’t call this an actual income yet — the IRS may beg to differ — but it is so exciting to apply my brain in this way, after what feels like a considerable hiatus of brain-worthy activity (weekly meal planning notwithstanding).
When was the last time you really celebrated your brain? Fed it with brain food (actual food, or something to kick its thinking up a notch)? It is easy to take for granted the precious commodity we each house inside our pumpkins.
They called me in after I got to the pumpkins. Good thing, I think, because the new MRI waiting area is basically the corner of a hallway, on a balcony overlooking the hospital’s main lobby, and there are some mobiles installed there which might have made me crazy if I’d stared at them too long. I don’t mind hospital art, when it doesn’t look like a fourth grader repurposed a year’s worth of plastic sheet protectors and turned them into art for Earth Day.
Kevin walked me back. He gave me an opportunity to show what I know about scan day. Smart guy. I know everything. Am I wearing any metal? No, I am not. Does Kevin have to ask if I’m wearing a bra? Yes, he does. It is a sports bra. That is OK with Kevin. I volunteer that I have some hair pins which I will of course remove, along with my glasses.
Lockers are finicky and strangely shaped and the key is tricky. There is some kind of water damage to the wall in the MRI suite. Every time I visit the hospital I am aware of it as a living, breathing entity, just as much (hopefully) as its inhabitants. Maybe I pay more attention to the building than to the people. I don’t want to see anything, you know? I am selfish and self-centered on scan days.
I ask Kevin why the IV hurts more than phlebotomy. He said it is the catheter that must hurt. I’m not fond of the IV. Once, back when my scans were two months apart and synced up on the same day, I had to walk six blocks with an IV in my arm, gift wrapped under bandages. It felt wretched and weird, like wearing my underwear outside my pants.
I should let you know that I know now that my scan was fine. I had high aspirations of live-blogging scan day for you. That isn’t how scan days go, though.
During my time in the tunnel, I lie there and listen to the loud machine sounds and look at my feet in the mirror that’s in front of my face and kind of wonder if it’s weird that I don’t get freaked out about being enclosed in a loud tunnel for 30 minutes. Towards the end of tunnel time, I always fall asleep, so when they unceremoniously slide me back out, I’m always a bit groggy and wishing I had a few more minutes. Then I text J and let him know he can walk over to meet me at Dr K’s office for the MRI reading.
Today, J was a step ahead and was already waiting for me. That gave me a boost. Just because I’m cheerful when I report for scans doesn’t mean this whole business isn’t just a little soul-crushing for me.
We went to Dr K’s office, the computer froze when I was checking in, and half the waiting room was off limits due to repairs inside the ceiling. The hospital was really struggling to keep itself together today. The staff computers have screensavers that flash staff-directed messages like “Demonstrate meaningful use” which is aimed at getting staff to get patient data and interact efficiently with computers and what, play less solitaire? (* my brother texted me later to clarify that meaningful use is not what I think it is) In all the years I’ve been going for treatment, I have never seen one staff member who looked like they were slacking in any way. Not once. The medical assistant who took my vitals today moved so quickly I thought she might sprain something.
Nurse Practitioner A came in, made chit-chat, but she knows what we are really there for. She pulled my brain up on the screen. One of these days I’ll get myself an atlas and really study up. It unnerves me not to know what I’m seeing, and when they are scrolling through the images looking for malignancies is not the time for me to ask for a brain anatomy lesson. I feel lucky to have this in-depth view of my brain, yet stupid not to know what I’m seeing. Lucky + stupid = my default condition in life, it sometimes seems to me.
Nurse Practitioner A says she doesn’t see anything, but cautions that Dr K is the final arbiter. After a few minutes, Dr K comes in. Today, he brings a radiation oncologist with him, who is working on a study or a paper or something.
After Dr K looks at my brain and pronounces it good (always, always bringing up images from the worst days to compare, to highlight, to show how far I’ve come) he goes into a part of my patient record I haven’t seen before. It is super detailed. It shows every single phone call I’ve made to every doctor, going back to the dawn of time. It showed my phone call to Dr P’s office yesterday, informing them that my latest eye thing was not another uveitis flare-up, but rather a totally unexciting and conventional sty, and that yes, I will go back on my meds now. (I got a one day break out of it. I used that time to eat unbounded by fasting for meds. Of course I did.)
He highlights a couple of dates and pulls up some memos about me for his colleague to read. I don’t get closer to the screen to try to read them, because I just got good news about 45 year old me, and I don’t want to read about the 43 year old female who presented with multiple brain metastases of melanoma. She is me, but also not me.
A few neurological benchmarks out of the way, like asking about my balance and energy level, and I’m done. He says to come back in three months, and then perhaps we’ll extend to four. Perhaps the beginning of a long goodbye.
There is Greek food for lunch on scan day. It always scratches an itch for me, and there is always Greek food near hospitals. I choose something healthy, spinach pie and salad, but then undermine myself by helping J finish up his less healthy choice.
Today, we also stop at the old deli on the corner that has a tantalizing display of cookies in the window. We go in and buy a small box of them, and when we ask where they are made, the counterman confesses they get them from Brooklyn. Which is where we will take them. Cookies for us and for the kids, who didn’t know today was a scan day for me, but will find out my good news now when I pick them up, hug them tight, and give them a dose of sugar for good measure.
I’m keeping promises to myself, day by day. Keeping myself accountable to a plan that will have me achieving certain things in a certain period of time (but always, always allowing for things not to go quite the way I intended). As has always been the case with me, progress isn’t linear — it always comes in fits and starts. I’m not a worker bee. I’m more like Frederick, the dreamy mouse in the children’s book by Leo Lionni, who doesn’t help the other mice gather nuts and corn for winter. He sits around and as an excuse for not pitching in, he says he is also storing up for winter – words, “for the winter days are long and many, and we will run out of things to say.”
At least that’s how I’ll chalk up today, leaving laundry in suspended animation all over my bedroom while I first went to an exercise class and then the gym, then came home and spent the rest of the afternoon working on building up my fledgling translation business. Speaking of which…
Today I saw a mockup of the packaging for a DVD for which I translated a essay, and got a check in the mail the same day for my work. I was feeling pretty good by dinnertime, even though our cupboards were fairly bare and the leftovers we’d projected would feed the whole family were barely enough for two growing boys. Note to self: Having leftovers now means make a double batch of whatever you want to be left over.
I feel torn between extremes these days, anxious about what is ahead for our nation even as I see that progress eventually can arrive. Last Friday I took the boys to see the beautiful new Second Avenue Subway stations, the first three to open since the line was proposed decades ago. I was surprised and then amused to see the New York State motto on the beams:
That’s a funny thing to put above a stairway, after all. On the other side, the beams are emblazoned with E PLURIBUS UNUM. We can be a little cynical, and say these words are there to acknowledge State and Federal funds that went towards the construction of the new stations. But I will prefer to think of them as reminders: Of unity, which I hope may yet be possible, even if we don’t know the form it will take. Of always aiming upwards (even when you’re descending to catch a train). Of Latin, the language of the gravitas we as a nation so badly need to reclaim, and the root of the three languages I’m looking towards to form a new career.
I had a followup appointment with Nurse Practitioner R today. This happens at the halfway point between CT scans. It is usually a friendly, checking-in type of visit (there is some bloodwork).
Today, I brought a camera person with me. Through a local group I’m part of in Brooklyn, I met Elyse Neiman Seiter, a filmmaker who is preparing to launch something called Mindful Films. She asked if she could make a short film about my cancer experience, and I said yes.
Elyse visited me at home last fall to interview me (I made a few jokes, but also shed some tears, during that interview), and our family was caught on camera doing some routine family stuff (I’m hoping some of my witty repartee with Young J while we prepared chicken cutlets makes it to the final edit). Today, Elyse joined me on my visit to the cancer center. I’m looking forward to seeing the film that results, and seeing this project take off!
It was interesting today to have someone sitting across from me on the train, capturing the ride to my appointment. I was not allowed to use my phone, which is my habitual time-killer, so I noticed things. A new poem up for Poetry in Motion. A new ad campaign. The new, extra stops on the subway now that the Second Avenue line is (at least in part) completed. Two subway workers got on. They assumed Elyse was heading up to the new subway stations to film.
Although I have now probably been to Dr P’s office dozens of times, bringing another person with a camera with me actually did change my perspective a bit. I noticed things in the waiting room that I usually don’t see, namely, countless pamphlets and reading material about melanoma. I typically ignore these because as soon as I open one I’ll see a bulleted list to help you establish just how fucked you are, and guess what? Brain mets are not very good! I know I have managed to beat them back for a good 20 months now, but it’s always so nice to have a reminder that the mere fact I had them at all dooms me.
Once I got in the exam room, and my vitals were taken and I was waiting to see Nurse Practitioner R, Elyse wanted to get some footage of me looking at one of these pamphlets. It was, in fact, something dressed up to look like an actual magazine. So I pretended to be excited to see it (“Ooh! The latest Advanced Melanoma! I’ve been waiting for this one!!”) Between that and a pamphlet for Tafinlar and Mekinist I had picked up in the waiting room, we were in stitches.
My visit was unremarkable ( I scheduled my next CT scan and EKG for next month), so I’ll give you a taste of what the finest in melanoma drug marketing looks like these days.
This first set I call: GET OUTDOORS, GET MELANOMA, GET TREATED, GET BACK OUTDOORS
Then, there are the people sandwiched between the dreaded white parentheses. As if having advanced cancer were not enough, the people in these photos have a constant floating reminder of how their lives or those of their loved ones may eventually turn out to be a footnote… a faint echo… a parenthetical statement.
Fishing and camping is apparently a big draw for people on my meds. The depiction of these activities reminds me of a joke I read years ago. A young boy goes to a store to buy a box of tampons. The clerk says, “Are these for your mom?” And the boy says, “No, but I saw on TV that if I get these, I can go swimming and horseback riding and all kinds of fun things!” I’m waiting for my invitations to fishing and camping expeditions. I’ve been on the meds a while now, so I’m not really sure what is taking so long.
The patient magazine was full of helpful articles, as the cover attests:
You might find it a little confusing to see Jimmy Carter’s name above a face that looks more than a little like George W. Bush’s. It baffles me too. But you should know that Jimmy Carter was the best thing ever to happen to melanoma marketing. Until his highly publicized “cure,” melanoma was fumbling around blindly, without a famous name to attach itself to.
Advanced Melanoma is aware of the zeitgeist of these 20-teens. It knows you thought about following Whole 30 for about 20 minutes on New Year’s Eve, right before you ate some more chocolate. So they helpfully provide a stock photo of a carb-less meal to signal that while your diet may not have caused your melanoma, and while proper nutrition may or may not affect your chances of survival, there is incontrovertible evidence that seeing a photo of grilled chicken and veggies will make you want to change your life. In some way. In any way. Maybe you’ll take a different subway train home!
I loved this stock Caregiver photo. It hits all the right notes. It is obvious no one in this photo is remotely related to one another. And everyone is listening attentively to White Guy talk about his twin brother George’s battle with cancer and just how big the fish were that they caught on their latest outing.
I’ve saved the best for last, of course. On the last page of Advanced Melanoma, this arresting image accompanied a piece about making sure you keep seeing your dermatologist.
Elyse and I had several theories, but I like this one best: We are seeing an incredibly limber and committed melanoma patient do a full backbend and contortion routine. She has bent herself backwards in half and is examining her own butt cheek with a scope, as the caption suggests. (Elyse posited that the dimensions of the rear evoke a Kardashian.) I’d love to hear what you see here — it is richer than a Rorschach blot, allowing for endless interpretation.
Lest you think I was lacking in any seriousness whatsoever today, I did make my usual inquiry as to what the targeted therapies I’m on might have to do with my suddenly (as of this past year) wonky menstrual cycle. I’ve raised the issue before, and been told that nothing indicated it was related. Today, Nurse Practitioner R said there might be a link. The reason the link isn’t well-established is that so few younger (premenopausal) women are on these medications (meaning perhaps that none were part of the trial). I’m lucky that I’m no longer thinking in reproductive terms, but I hope for the sake of women younger than me that the link is eventually identified, and crucial information is given to patients.
Life in this liminal zone of taking meds whose long-term implications are still quite poorly understood can be confusing. You look for whatever helps you. (I choose to laugh.)