Document it

I’m still trying to emerge from the foot injury, trying to inch towards something that feels like a stretch of uninterrupted good health (whatever that feels like). Last night, though, I went to bed with a headache, and this morning it was bad too. I was sensitive to light and noise. I felt dizzy. I’ve never been a migraine sufferer, though, so I kept feeling it might be something else.

When you have cancer, your “something else” can be quite extreme. I’m not sure if I’ve used this phrase here before, but when you have cancer, you become a hypochondriac with cause. You interrogate every slight symptom, because you remember the last time you had a bad headache and it lasted three weeks and suddenly you woke up one day and you had trouble talking.

You also remember the last time you got dizzy spells was when you were training for your big bike ride, and then you remember that you just joined a gym this week and have been going at it full tilt for three days straight, and not necessarily refueling adequately, because you have this stupid notion that carbs are keeping you at this weight (when it might very well be the fault of your meds), and that the extra weight isn’t helping your foot recover.

I saw Dr D (the ophthalmologist) yesterday and he proclaimed an end to my latest bout of iritis. As soon as my head stops hurting I’ll wear contact lenses again for the first time in ages. (Which means I’ll need to confront how much older my eyes look.) Dr D also has plantar fasciitis. When he told me, I high-fived him. I mean, what else is there to do? We compared remedies. I taught him a new stretch.

J got out of bed this morning when I begged him through the pillow covering my eyes to make me some eggs. He came back with the most delicious omelette I have ever eaten. (J never, ever fails to rise to the occasion.) And I ate in bed even though it wasn’t my birthday, or Mother’s Day. That alone made me feel much better.

The headache is still there, though — I can feel it behind my face just waiting its turn to come back. No gym today. No ill-advised starvation tactics either. I am in survival mode.

The onset of the headache also came on a very heavy day for me. Last Thursday, a documentary filmmaker I met in the neighborhood came to film an interview with me, about how I cope with cancer, for a project she would like to get off the ground. I was okay for about the first 20 minutes, after which point I cried intermittently on camera for the duration. (I begged her to edit out any really ugly crying.) She asked me a lot of questions about the chronology of my illness, about how it felt and how I coped, and she even flattered me by quoting things I’d written here on the blog (some of which I could barely even remember having written!).

And she asked me how I stay hopeful. That was the hardest thing to answer, I think. The fact is, hopefulness isn’t a conscious choice I make. It’s more that the alternative, the “succumbing to despair,” doesn’t sound very attractive to me. I have young kids. It feels like despair would be a very self-indulgent pose to strike. I won’t do it until it’s absolutely necessary, and if that’s five minutes before doomsday, so be it — unless somehow I can get an extra five minutes.

Last weekend, a friend’s daughter spent some time with us, she too with a documentary project in mind. She’s a photography student, and was assigned to document children growing up in New York City. I’ve avoided sharing photos of my kids here, but these are too good not to share, so I’ve selected a few where you can’t really see their faces. And one of me, which I like, in spite of how I look. And which I like because it’s a stern warning to me, that if you ever let a photographer into your home, you might spend even thirty seconds thinking about what you’re wearing.

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Pink (NOT Pinkwashing) for health

This is the month of the Pink. Pink-tober. The month during which nearly every commercial entity in the US feels it needs to weigh in on breast cancer by turning everything in sight pink. The origins of painting the world pink are sinister and cynical.

Another blogger I have been following, at the small c, posted her thoughts on Pinktober recently. (As a breast cancer patient, I feel she is both more qualified and more entitled to weigh in on this.) She tells an unpleasant tale of a television appearance she and a friend were solicited for, which was initially presented as a way to raise awareness about breast cancer, but was actually actually going to be a completely scripted, absolutely not genuine representation of two friends with breast cancer. It doesn’t surprise me in the least that this was the aim of the producers — to shove aside anything the actual sufferers of a disease might have to teach people, in the interest of advancing their own narrative about cancer (right or wrong).

My cancer does not have quite the brand recognition that breast cancer does. It isn’t even in the top three in terms of market share. Add to this the fact that my treatments, immunotherapy and targeted therapy, aren’t part of most people’s cancer lexicon yet (although immunotherapy is starting to be something that people recognize, more and more).

The official color of melanoma is black, which means on any given day, I’m an ambassador for my brand, but no one realizes it, because I live in New York City, and people tend to wear a whole lot of black here. Immunotherapy, as its major proponent, the Cancer Research Institute, has decided, is represented by white. (A yin-yang situation, when it comes to melanoma, which was one of the first cancers to be successfully contained with immunotherapy.)

Strangely enough, and even more so because I don’t ever wear pink, and have never surrounded myself with things pink, it has taken on a layer of meaning for me that is, if not health-focused, at least health-adjacent.

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Pink heals (cancer & heels)

Pictured, my morning dose of Tafinlar, one of the two targeted therapies I take — although Mekinist, which I take at night, is pink too) — and my beloved pinky ball. I first came across these balls in use at my favorite local exercise studio, where we use them while standing against a wall, to roll out tight spots on our necks and shoulders. Lately, the pinky ball I bought for home use has been keeping the blood circulating in my left heel, as I struggle with plantar fasciitis. (Not included in this photo: My Prednisolone eye drops, which have a pink bottle cap, and which help when the pesky uveitis that is a side effect of my treatment shows up.)

I understand, and deplore, the hijacking of Pink(TM). But on a personal level, I guess I’ve become a fan of the therapeutic pink things in my daily orbit.

And also a fan of the poem reprinted here, by my late friend Sarah, who had something different to say about pink. (I still miss her.)

It will all make sense eventually

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I Find The Railings To Be Counterintuitive, by Jon Fravel on Flickr, licensed under Creative Commons

I’m still dealing with my hurting foot. It gets better and worse, depending on how much bandwidth I have to devote to it. When the kids aren’t in school, as they were not for two days this week, and will not be for two more days next week, I have to give myself over to their need to be amused. (Which means to hell with self-care, usually.) But this week, I took them to the transit museum, one of their favorite spots, and did not do too badly. They’ve been there a million times, so I would park myself strategically on a subway bench or bus seat and wait until they were ready to move on. Wherever possible, I paused on a staircase to stretch my Achilles tendon, which tends to bring instant relief.

This week, I also took the kids for their first dermatologist appointments. I was an adult before I saw a dermatologist for the first time. But my children don’t have that luxury anymore. They have family history. I am their family history. I filled out two sets of forms for them, conveying this information, even though the doctor is my own doctor, and knows very well what is going on. When the assistant came in, though, she went through the questions as though I had left the forms blank. She asked, in front of the kids, “Any family history of skin cancer?” YES, I glowered. “Oh! But not melanoma, right?” she replied. I almost bit her head off. Meanwhile, the kids seemed too preoccupied with exploring a strange new exam room to notice her carelessness. At least I hope so.

In the end, all was fine. Young A doesn’t have the dread molluscum contagiosum on his elbows, as the pediatrician had suspected. Just dry skin, maybe a touch of eczema. Young J has freckles, like me, but they haven’t spread all over his body, as mine did. And if I have my way, they never will. Both kids swore a solemn oath to the doctor, that they would always wear sunblock and protective clothing, and in that moment I instantly began worrying about them at sleepaway camp next summer, without me around to do quality control on their sunblock application skills. I guess there is some time to practice.

I’ve also discovered that my sore heel, rather than needing a lot of cushioning, actually does better with a more rigid support and a bit of a heel on the shoe. My strappy summer sandals came in handy as I walked around with the kids in unseasonably warm temps this week. My fall boots have been coming in handy when it’s cooler out. That leaves my sneakers, which at present seem to cause me more pain than any other pair of shoes I own!

When you can’t count on your sneakers for relief, everything seems topsy-turvy. Counterintuitive. “Fair is foul and foul is fair,” the witches in Macbeth chant.

A fellow melanoma traveler pointed recently on her blog to a study done in Italy, of twelve patients on the same BRAF/MEK inhibitor therapy that I am on. Each patient had serious reasons for suspending treatment, having to do with side effects. Half of the group relapsed (with two dying), and half did not.

I’m not yet seasoned enough to read these papers dispassionately. I scour the table of data on the patients, hunting for anyone remotely like me. I compare their side effects to mine. I wonder what their names are, and what their families are going through, and where in Italy they live.

And I realize that as long as this treatment is working for me — and it is working, and I’m so grateful for that — I don’t really need to ask about going off the meds. That isn’t a reasonable goal, since I’m doing well on them, and they haven’t given me fevers or damaged my heart (knock wood) or elevated my liver function very often.

Just some eye troubles which I know how to manage. Just a three-hour fast, twice a day. Just a calendar pockmarked with appointments for scans, checkups, reminders to recount and reorder meds. Life with cancer. Possibly improved by a little punctuation: Life, with cancer.

Hallelujah, and more needles

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North American porcupine (Erethizon dorsatum) close up, by Tatiana Gettelman on Flickr, licensed under Creative Commons

I went for my second acupuncture session yesterday. I knew what to expect (a little ouch and a lot of ahhhh), which made it both easier and harder to withstand the jabs that hurt. The sole of your foot is a pretty unpleasant place to get stuck. I hope you never need to find that out.

But generally, things seem to be easing up. I realized my sneakers were making things worse, so I switched to some fall boots, and my heel feels much better now! Back to the usual, more familiar discomfort of my toes feeling crunched…

I realize I never reported here on the results of last Thursday’s brain MRI. Everything looks fine. There were no new spots, nothing has started growing again. It was a busy day in Dr K’s office, so Nurse Practitioner A and Dr K saw me in a pre-exam room, and had their first look at the images as J and I sat there, clasping hands and waiting for a verdict. There was nothing to report. Sweet, sweet nothing.

So instead, Dr K (who is extremely understated) decided to let me know just how extraordinary my progress has been, and let me know that he’s been seeing similar progress in a lot of his other patients who have brain metastases of melanoma. He collects the MRI brain images of his patients for slides (since his specialty is gamma knife surgery), and he said he now has too many of these progress slides. What a wonderful surplus to have.

He also said that I’d already far surpassed the survival rate for brain mets. I didn’t press for statistics, because I know those change all the time, that data is being compiled as we speak of survival rates with the drug therapy that I am on. I don’t typically search for data, because I know that my (former?) classification as Stage IV is a meaningless one, and therefore the other data I might find is probably suspect, too.

But my curiosity got the best of me, and when I got home from the appointment, I did search for information on how things were before my current therapy was widely available. According to this review article published in 2013, the median overall survival rate for people like me was four months.

It has now been 18 months since my brain metastases were found. Almost a year since my “touch-up” gamma knife surgery for one tumor that had begun bleeding, with Dr K opting to treat it noninvasively instead of with open brain surgery, which many of his colleagues had advised. He said it was a gutsy move on his part not to listen to them. I am so glad he had the guts.

I don’t think a day passes that I don’t think about Kate the Great, wishing that drug therapy for metastatic melanoma had achieved this kind of success for her, and for many, many others. We do still need more good slides, Dr K. We need millions of them.

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.