Prickly

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Needles, California, by Ken Lund on Flickr, licensed under Creative Commons

Desperate times call for drastic measures. You might think I’m talking about the election. But you’d be wrong. It is the last thing in the world I want to talk about. We’re in a state of national emergency. Everyone is pointing at things and saying what they saw and is historically appalled. But we are all looking at a third thing. Time to face each other. Look each other in the eyes and see if we can say those exact same words, have that same swagger, shimmy those shoulders.

No, my desperation has been quiet and intense. The plantar fasciitis has gotten the best of me, and Nurse Practitioner K noticed, last week when I was there for my checkup. She noticed, even though that isn’t exactly her job. Except it is — it is her job. I mentioned I was tired and she said there was no medical reason, so it had to be that I’ve stopped exercising, that I’ve been extremely limited in my movement, because every other step spells shooting pain every time my heel strikes concrete, which would be I-don’t-even-want-to-know-thousand divided by two, every day. My right knee has even started hurting, in sympathy, and because my entire alignment is off.

Nurse Practitioner K is intuitive. A regular Miss Clavel. So she exhorted me to try acupuncture for my foot. She also knows me well enough that she knows I’m the kind of patient who will follow up on this sort of suggestion. I called up a place that same afternoon. They offer “community acupuncture” at a lower cost, at certain times of the week. I booked a 9 a.m. appointment for today, which by Friday night had been changed to tonight at 8:15. I guess there are perks to having a flexible schedule.

I’d tried acupuncture once before — my regular doctor practices it, this being Brooklyn and all — but hadn’t been all that impressed or convinced by it (one session, with the aim of improving my lung chi after a very bad pneumonia). I haven’t had a chronic condition like this in a while, though, if ever. Nothing as hard to solve as this, although I’ve tried a splint, stretches, frozen water bottles, tennis balls, and more stretches.

I had been planning to drive to the clinic, which is close by but not close enough to walk, with my bad foot. Then it got late. I found myself doing something very uncharacteristic, and calling a car service. I arrived early, and filled out a ream’s worth of forms. This seemed serious.

My acupuncturist, L, came out. He was friendly. He ushered me into a consultation room that looked like a place you’d go for therapy. There was a tissue box in easy reach. But I didn’t cry. I felt at ease. I had watched a video on YouTube of an acupuncture session for plantar fasciitis. There were only two tiny needles. Surely I could handle those!

When I finished talking, L said he was game to try to help me… but that I should understand the needles might hurt. Because there would be a lot of them. All around my heel, and ankle, and on my calf. I felt a little deceived, but I wasn’t going to be scared off. I thought about all the pain I’ve experienced in the past few years: The injection of four radioactive tracers around the site of my melanoma (like being injected with fire); the radiation burn; the slow healing from it; three weeks of colitis. I stacked everything up, added two natural childbirths to that, and said to L, “I think I can take it.”

By the time we finished talking it felt super late. There weren’t many people left at the clinic. I went into a treatment room that was divided by a curtain, the other half darkened with another patient enduring her treatment there. I had to lie face down, put my face in one of those donuts they have on massage tables, which, regardless to which angle they are adjusted, always make my sinuses drain right into my nose so that I have to mouth-breathe. Deep breathing wasn’t a bad option as L prepared to stick me. Was I ready? he asked. Of course I was, thumbs buried inside my tightened fists. I always squeeze so much harder than I need to. An overreaction that makes almost anything more endurable. He tapped around the area where the jabs would be, sneakily. Of course none were all that bad. I inhaled sharply when I felt each sting, but that was it. Then there was just the hanging out, on my face, heat lamp trained on my foot, in a dark room with a needled stranger on the other side of the curtain. She and I were sharing an experience that was anonymous, but somehow moving. I felt cared for, deeply and completely. I had met someone who would try to take my pain away. And at a discounted price to boot! How often can we say a day ends like this? I go back Saturday. I can’t wait.

Acupuncture as a metaphor machine for this election? I don’t know, maybe. Stop fighting with what is hurting you. Accept help from qualified professionals. Leave your comfort zone — which may have turned uncomfortable, even toxic. What feels painful in the moment might be the thing that can heal you.

5777

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Mystic apple, by Angela Maries Henriette on Facebook, licensed under Creative Commons

Bring it on, new year. Bring on health, for me and my loved ones and friends. Bring on serenity, and bring an end to the most unpleasant Presidential election cycle I can remember.

I stayed close to home today, my parents’ home, since my foot still hasn’t improved enough to risk the day of museumgoing that J and the kids did. I didn’t exactly loaf, though. I made gefilte fish from scratch, cementing my knowledge of the family recipe for the ages, every single, idiosyncratic step, from “plug in the power converter for the European mixer and grinder attachment” all the way up to “taste test.”

I spied a project to work on while working on the fish, and that was a towering stack of recipe printouts and cookbooks on the corner of the kitchen counter, which threatened to topple over onto the dish drainer. My mom went along with it, even though it was the last thing in the world she wanted to do today. She eventually recycled about 95% of the recipes, and the rest we filed in a three-ring binder separated by category. We reshelved the cookbooks. And I got to feel like I’d done something good today. (I should turn my attention to my own home next — there are plenty of opportunities to feel good there!)

If you’re celebrating this turn of year, or even if you just need, at this point in the year, to feel like something new and shiny is beginning, then I wish you a happy one. A feeling of fulfillment that can come, regardless of whether you’ve sorted through a pile of long-unattended papers or not, whether you’ve reckoned with your demons or not.

There is always time for more reckoning. I know not everyone approaches this holiday in the same way. Whether you’re dining on heirloom recipes, or whatever you feel like cooking tonight, I’m sending you thoughts for a sweet, happy and healthy year. I’m glad to still be here to celebrate another one. This year, I’m thinking hard about what I want the next year to be, because I’m feeling lucky enough to assume I’ll be around for it.

The eye has it

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¡Eye caramba!

Annnnnd I have iritis again. Just one eye. Same eye where it flared up this summer. It snuck up on me, this time — a couple days of feeling uncomfortable in my contact lenses, then seeing it not improve much when I switched to glasses. Luckily, no pain or sensitivity to light this time. I went to Dr D’s office yesterday morning (above photo is from there, just one corner of a tiny exam room that is stuffed with lots of… international stuff). A medical student was shadowing him for the day. I’m sure she was surprised to encounter such an odd bird first thing in the day. I told her, cheerfully, “You’ll probably never see this condition again!”

So I’m back on my regimen of eye drops (including the ones I bought in Italy — who says I didn’t bring back any souvenirs?). And my plantar fasciitis is as painful as ever. And I’m on a break from the cancer meds due to the eye thing, so all restrictions on when I can eat are off. Which means… nothing very good.

At least I hauled myself back to the gym this morning, first time in over a month. Resilience is not easy for me, but I have so many opportunities to learn it, I have to believe I’m getting a little better at it.

People are strange

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Stranger, by Dennis Skley on Flickr, licensed under Creative Commons

I’ve been fine, just fine! A little busy lately. And surprised to suddenly feel busy. I had a dream last night that I was giving birth. A very kind friend on Facebook suggested that one interpretation for this is, I have some kind of project that will soon come to fruition. To which I say: YIPPEE! (And also: When that happens, will someone please let me know?)

I recently picked up a book that spoke right to my heart. When Strangers Meet: How People You Don’t Know Can Transform You is a small book by Kio Stark that reveals the pleasures of talking to strangers. (You can get a sense of the book in Stark’s related TED talk on the topic.)

I’ve always been fond of talking to strangers. It’s probably one of the reasons I doggedly insist on living in a big city, instead of moving to where the air is cleaner and the housing stock is cheaper. I have to believe that a good portion of the people I encounter in a given day living here agree with me — that contact with strangers is not only a must, but a bonus to living cheek-by-jowl with people you aren’t related to. Even a grocery shopping trip can put me into close contact with strangers here — at the food coop we belong to, you can borrow a cart to get your groceries home, and a fellow member who is on duty as a cart walker goes with you, and then returns the cart to the store for you. I have had fantastic conversations on these ten minute walks.

I hope I am transmitting my enjoyment of talking to strangers to my kids. Stark, who has a four-year-old daughter, talks about observing, as they walk around the neighborhood, how her daughter “sort[s] strangers,” figuring out who to greet, and what to say, based on her mother’s choices. The way we categorize others is the foundation for our interactions with them, Stark says, but the fact that the “us and them” approach to categorization worked at earlier periods in human history, does not mean it is always relevant to be wary of strangers now. Certainly not when I’m walking around my neighborhood. (And yet, it would still be relevant if I were to approach the owner of a 24-hour fried chicken restaurant in New Jersey, who scatters bombs in his spare time.)

Another aspect of stranger interactions that Stark brings up is “fleeting intimacy,” the kind we share in passing on the street, waiting in line, or riding the train. The importance of seeing and being seen is at play here, Stark says — when you speak to someone you normally wouldn’t, when you have some small interaction with them, under the umbrella of the transitory moment you share, it can buoy you. Lift you. Your existence in the universe is acknowledged, and confirmed.

When I was on steroids last year and the year before, I suddenly couldn’t stop talking. People who knew me recognized it as a personality shift. I also talked to plenty of people I didn’t know, or hadn’t known very well, before the medication transformed me into a hyperloquacious flaneuse, always on the lookout for the next transformative conversation on the street. I never really interrogated the reason behind my sudden, urgent need to talk to everyone. And now, suddenly, it becomes clear. My existence was under a serious threat, back then. Each day, each hour, there was a chance the meds wouldn’t work, the tumors wouldn’t respond to the lasers. The weight of that knowledge was considerable. I would have easily retreated inwards, were it not for the medication that was making me suddenly sociable. Talking to people helped me confirm I was still here, and that this fact of my being here mattered, and it made me feel good enough to want to keep being here. What an amazing thing to realize, a year plus after the fact: Talking to strangers isn’t just a hobby. It is an act that might even improve your mental state, when you are under extreme stress.

Stark’s book concludes with a section called “Expeditions”: exercises you can undertake to put yourself in contact with strangers. Some (“Say Hello to Everyone”) are more easily accomplished than others (“You Don’t Belong Here” sends you into territory where you clearly don’t belong, with all of the dread associated with that for a functional introvert like me). All of them are worth considering, and maybe, eventually, doing.

While my period of uncontrollable interactions with strangers has (thankfully) passed, I still continue to seek out opportunities for these moments, the ones you walk away from keeping a smile on your face, long past the time it should have evaporated.

Metasta-versary!

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Double Rainbow, by James Wheeler on Flickr, licensed under Creative Commons

Two years ago, yesterday, I showed up alone (bad move) at the cancer center for results to a CT scan, and got a nasty surprise — tumors found on my lungs. I learned that my existence on this planet was no longer under warranty. Actually, I learned the biggest secret of all — that no one is covered under warranty, that that’s just something we sort of assume if we’re ever going to manage to get out of bed in the morning.

It’s been a hell of a two years since then. But it hasn’t actually been hell all the time. I’ve been lucky. I’ve met a lot of amazing people. I’ve been helped by people I’ve never met. I’ve gotten to know or learned about many people living with cancer. And I’ve mourned people who didn’t get to survive. I’ve raised money for research. I’ve learned how to advocate for myself in the face of monolithic health care bureaucracy, and how to manage the side effects of my medication, about which there is still very little understanding among medical professionals. I learned there is a pharmacy at the Vatican, and it’s one of the busiest in the world. I’ve sung as part of a feral choir, backing up one of my favorite bands in the world.

I’ve also spent a lot of time in bed. My mattress and I have a very deep and complicated bond. It isn’t the healthiest relationship, because my bed is a classic enabler. And it’s so hard to break up with the place where you spent your very hardest moments. (Also? You need to sleep in your bed, every night.) I’m aiming to forge a new relationship with my bed, a more professional one, hopefully. Wish me luck.

And — since I don’t do this enough — I want to thank you. Yes, you there, reading this. You didn’t have to, but you did. That means a lot.

Gone fishing

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It tasted... pink.

I’m just keeping a little quiet these days. Nothing to worry about. The kids will finally head back to school in a couple of days, meaning I’ll be able to reconstruct my thought processes and compose coherent sentences more frequently. And exercise. Yes.

I finally had a glass of rosé the other night, since everyone seems to be drinking it. It tasted just like the cheap bottles of white Zinfandel I used to buy myself back in my early 20s, when I had the impression that doing that made me very sophisticated. It tastes about a half step removed from a wine cooler. Perhaps I am missing the point? Anyhow, it was pink, and I do like to drink and eat pink things on occasion. I guess I’ll just focus on the pink drink being lemonade, going forward, unless someone can suggest a pink wine that will really blow me away.

Next post will probably be a book review, since a new one just arrived. It’s about why and how to talk to strangers. Stay tuned!

Trough *

(* The meteorological one, not the one at which animals eat.)

Another CT scan tomorrow (chest, abdomen, pelvis — because my head is covered by the MRI, and below the pelvis is… expendable, I guess?).

You’d think a scan would hardly make me bat an eyelash now. But you’d be wrong. It’s pretty hard to forget the sneak attack melanoma perpetrated on my lungs — almost two years ago now — and thus, hard to put out of my mind the notion it could happen again, perhaps in another organ, or, even worse, the same ones (meaning the meds have stopped working). Asymptomatic maladies are the worst. The very definition of a mindfuck.

Still, there is always the way of distraction. We went to the beach yesterday. Not the one we meant to go to, on Fire Island, because somehow between J and I we were too distracted or beach-starved to realize the GPS was routing us past Jones Beach first, and then another 20 minutes down the road. Instead, we mistakenly opted for Jones Beach, which has much nicer landscaping on the walk from the parking lot:

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Beach-bound.

We had a lovely time, regardless. None of us got too much sun (though the half of our family that freckles, freckled), and for perhaps the first time ever, the boys were too busy jumping waves and laughing maniacally when they were smacked by them to do much sand castle building or digging.

During an idle moment, when the beach got crowded, I asked Young J to look around at the different groups of people and decide which group he’d like to be part of when he gets older. The boisterous (drunk) people with the loud music? The huge extended family with their extensive feast? He said he’d probably come to the beach with his wife and kid.

We had a cloud looming over all afternoon. At one point, it seemed like certain doom:

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Perfect beach weather (... if you've had melanoma)

But not a drop of rain fell while we were on the beach, though I would have been happy to retreat to our tent and zip ourselves inside it during a storm.

I wasn’t thinking much about mortality all day, until we got back to the parking lot and were confronted with it, in the form of a bumper sticker:

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Subjunctive tense / Heaven

The sticker reads, If you were to die today (already a tricky sentiment to express on a moving vehicle — is it wise to keep death at the forefront of your mind while driving?) and the blue word indicates… is that the driver’s choice? Their conviction? Did the sticker come with a red Infierno sticker with a down arrow, so you could choose? It all seems so fishy, because it’s so binary. I’m no longer convinced of binarity, as a general concept. And certainly not when it comes to post-death reality (which in Judaism is known as the world to come).

All I need to do when I want to think about mortality is ponder my skin.

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Summer legs

When your skin is the thing that has turned against you, there is no escaping the reminder of it. It is always there. A low-level warning. I’ve always liked my freckles, their seasonal proliferation. It is still, even several years into this cancer journey, hard to accept my skin as being my greatest liability. I still leave the house hatless, or without a speck of sunblock on, sometimes. (And that is not due to ignorance, not at this stage. Stage four, I mean. Or wherever in the now-useless staging scheme I may currently be.)

The weather is cooler, cloudier, this afternoon. A trough is a transition, after it comes a resolution. Tomorrow the scan, Wednesday morning, the verdict. In between: More loving, parenting, despairing, rejoicing, scheming, cooking. The living I do without stopping to marvel on a regular basis that I have been able to do it for this long.

One remembered, and another leaving

I shared my pain with you when Kate Boone died in April. I was grateful to be able to share her story with you. And I have been grateful to get to know her mother, a little, on Facebook. She published a final blog post on Kate’s blog yesterday, taking us through Kate’s final days, speaking about her pain, and telling us some things we didn’t know about Kate the Great. I urge you to read this monumentally moving post.

Via Facebook, I also learned about another melanoma patient in New Zealand, Jeffrey Paterson, whose disease first struck him young (age 16). He is now 23, and he and his family and friends have made valiant efforts to raise funding and awareness about funding for melanoma drugs in New Zealand, a country with one of the highest incidences of melanoma in the world. His struggle to have his medication funded is one that is all too common.

Unfortunately, his disease has progressed beyond his treatment options, and he has started hospice care. I’m so sad that yet another life is ending much, much too soon.

A series of unfortunate events

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falling-piano illustration, by Frits Ahlefeldt-Laurvig on Flickr, licensed under Creative Commons

Reentry from the trip has been rough. Following the uveitis drama, when we got back, I developed some sharp heel pain which turns out to be plantar fasciitis. I got that under control by stretching and not walking around the house barefoot. And then — reproductive system alert — after a 129-day absence that had me hoping I was perhaps done once and for all, my cycle returned on Sunday (not the kind you ride for charity, and btw yes, you can still donate to that, through the end of the month!).

Yesterday, I dragged myself out of the house and did the week’s grocery shopping. I wheeled two boxes of groceries back home in a cart I borrow from the store, and because it is a coop, this means someone who is a shopper-member, just like me, walks home with me and then takes the cart back. I had a dandy conversation with the walker yesterday, about the array of oral hygiene products for sale at the coop.

When I pull the cart into the front garden, I have to take the boxes out of the cart, carry them up the stoop, then inside, then up one long flight of stairs to our apartment. Somewhere during my climb of the stoop with two boxes stacked on top of each other (to be efficient and not make two trips), I did something to my right shoulder. The good one. The one that, to date, has never slipped out of place, forcing me to wrench it back into place while wailing in pain. No, that’s my left shoulder. And now my right shoulder — actually my whole right arm, and even my back and my head, a little bit — hurts. Did I mention that because I’m on Tafinlar and Mekinist, I can’t take any of the good anti-inflammatory drugs (ibuprofen, Aleve) that normal people may turn to when they are in this kind of pain? I get Tylenol, and, per the instructions of the doctor I saw last night at Urgent Care, Prednisone for a couple of days. I waited to take it until this morning, since I know how sleepless it makes me. (It was simultaneously great and awful to be able to come home, open up my giant pharmacopoeia, and find plenty of Prednisone, in the right dosage amount, left over from November 2014. Yes, it is apparently good for three years.)

I’m hoping this is the last of the series of shitty things to happen. And I’m going to post again later with some much sadder news from the melanoma world at large, lest you think I can’t see past my own navel here (or my own busted shoulder, as it were).