Seeing Thestrals

I found this lovely write-up on Pottermore, when I wanted to find out how to spell thestrals the other day:

Manifesting as black, skeletal, bat-winged horses, but invisible to all who have never been truly touched by death, Thestrals have a somewhat macabre reputation. In centuries past the sight of them was regarded as unlucky; they have been hunted and ill treated for many years, their true nature (which is kindly and gentle) being widely misunderstood. Thestrals are not marks of ill omen, nor (their spooky appearance notwithstanding) are they in any way threatening to humans, always allowing for the fright that the first sight of them tends to give the observer.

Being able to see Thestrals is a sign that the beholder has witnessed death, and gained an emotional understanding of what death means. It is unsurprising that it took a long time for their significance to be properly understood, because the precise moment when such knowledge dawns varies greatly from person to person. Harry Potter was unable to see Thestrals for years after his mother was killed in front of him, because he was barely out of babyhood when the murder happened, and he had been unable to comprehend his own loss. Even after the death of Cedric Diggory, weeks elapsed before the full import of death’s finality was borne upon him. Only at this point did the Thestrals that pull the carriages from Hogsmeade Station to Hogwarts castle become visible to him. On the other hand, Luna Lovegood, who lost her own mother when she was young, saw Thestrals very soon afterwards because she is intuitive, spiritual and unafraid of the afterlife.

We finished the Harry Potter books as a family earlier this fall. It was great, and hats off to Rowling’s tremendous world-building, and to The Historian’s amazing reading aloud talents. A few days later our local bookstore announced that it was having a Harry Potter event. I didn’t know if it would be a big deal, but then I walked in the door to find the store full of little kids in black capes with Griffindor scarves, round glasses, and drawn on lightning scars. We got a free Lego Snitch. It was the cutest thing ever, you guys.

The Thestrals, and the books in general, show us that kids are drawn to darkness. Probably we all are, since it reminds us that we are all so resilient and capable of handling so much. It’s something I wonder about–is it fair to bring so much uncertainty to my children? As a parent, you’re supposed to be a constant source of strength, not a source of weakness and uncertainty. Much as I don’t feel like the best mother in the world, I do my best to be there for the people that I want to take care of, and it is an honor to do so.

I’m still on this kick of thinking of Nina Riggs’ The Bright Hour. I grew up in a pedagogy that says that the more critical you are, the smarter you are. I have been trying to fight this my whole life, so let’s push back on this together. The fact that I have anything critical at all to say about Riggs’ beautiful work is astounding to me. There’s this line that people love and respond to. Of her two boys, she wrote, “Their very existence is the one dark piece I cannot get right with in all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.” Isn’t that an amazing line? And yet. I have a love-hate relationship with that line because Nina was clearly so much more than a mother. It is a beautiful paradox that she saw herself this way. Reducing women to their existence as mothers is one of the modern gender problems that we just haven’t solved yet.

My children got to see me at my most vulnerable, waiting for the paramedics and being hospitalized; and that is probably okay. When I got home from the hospital, I was able to say to each kid separately, “I’m sorry you had to see how unwell I am. I don’t know what it’s like to live with the stress that you live with. But if you want to tell me about it, I want to hear what it’s like.” I’m still waiting.

Before I got so sick I was reading Malignant Metaphors by Alanna Mitchell, a Canadian science journalist who was confronting her own fascination with cancer when her brother-in-law was diagnosed with melanoma. The book was brought to my attention by K, a helpful doctor friend. You know how I’m always looking for metaphors? Well, so is Mitchell. Near the end she writes,

So, cancer as an ecosystem. Cancer as a chemistry experiment. Cancer as a creative cooking recipe, or as a complex video game. I don’t mean this to be comprehensive, but simply the spark to a conversation. The point is that meaphors can evolve. We just need to give them permission.

I wonder what it would feel like if cnacer were a dance, like the example of the argument Lakoff and Johnson write about in their book on metaphor. What would it feel like then? The person with cancer would be a dancer, creating art and maybe beauty and maybe life. Dances take different forms. Some are anarchic. Some dissonant. But they are always radically personal. It’s hard to feel polluted when you dance. Hard to feel as though your very self has been erased.

What’s next for books, you ask? The next family book will be …

frankenstein

because Victorian proto-feminists!

Also, for a recipe, La Neige and I made spaghetti and meatballs last night. It was not at all kosher, since I used some pork and buttermilk in the mix, but it was delicious. I used this easy marinara sauce recipe, and I can and did eat the leftover marinara sauce with a spoon.

Healing

A useful bit of information to squirrel away is that the body does not necessarily respond to your commands. No matter how much I lie on the couch and say, “Okay, brain, time to regenerate: Go!” It does not go, and I get up just as wobbly and inarticulate as I laid down.

I came home from the hospital on an increased dose of dexamethasone, the high-impact steroid that I prefer not to be on. The good news, dear reader, is that I believe that being on dex makes me write more because 1) I sleep less, and 2) I believe that I have important things to say that you need to read. This latter point is probably as harmless as it is dubious.

So I’m tapering off the dex, a prospect that makes me lie on the couch extra and hope for the best. I get up to cook and do whatever, but I am lucky enough to have few demands on me.

In other news, R/The Historian took me back to Hamilton on Friday, where the radiation oncologist pronounced me to be responding well to treatment. Last week I saw the medical oncologist, who adjusted my treatment schedule to try not to stress my system with a new drug until after the holidays, when I will probably move on to TDM1, which is the second-line treatment for HER2+ breast cancer in Ontario. Moving to a second line is a bitter sweet move, but it makes sense for where I am at. Honestly, being on a first line treatment for as long as I have — more than 2 years — is pretty great, I think.

This brings me to a burning question that I have had, and that is what is it that oncologist hope for? And do they dream of electric sheep? As Nina Riggs wrote,

Whatever it is in oncologists that makes them want to be oncologists — that crazy mix of fierceness, optimism, arrogance and compassion — I get a contact high from it. It’s like love at first sight, or touching something on fire. It’s like making a choice and refusing to look back.

Much as I’m told otherwise, I try to be the good patient, and I am grateful for the expertise of the excellent oncology team that I see regularly here in London. I wonder what is “good enough” for the team, especially in a bewildering time when we’re told that patients should be the ones to lead with their conception of quality of life, etc. I do my best — who has two thumbs and maintains a weight of 120+ lbs?  

It’s winter again, here in late November. I hate the short days, the bare trees, the icy sidewalks. I hate that I have fallen into some sort of pattern where I feel good during the summer, when it’s nice to be outside, and I feel especially rotten in the bleak winter months. It just exaggerates the normal order of things around here, except that many of the smart Canadians escape to Florida or the Caribbean. Fly away, Canadians!

My favorite new recipe recently is this white bean recipe that I snaggged off the NYT while they were offering the recipe for free to their Weeknight Recipe Newsletter subscribers. I will reprint it here for free, in protest of the NYT policy of no longer giving recipes out to their digital subscribers.

Cheesy White Bean-Tomato Bake

YIELD 4 servings

Ingredients

  • 1/4 c extra virgin olive oil
  • 3 fat garlic cloves, thinly sliced
  • 3 Tbsp (or more!) tomato paste
  • 2 (15-oz) cans white beans, such as cannelllini or Great Northern
  • 1/2 c boiling water
  • kosher salt and black pepper
  • 1/3 pound mozzarella, coursely grated (about 1 1/3 cups)

Step 1–Heat the oven to 475 degrees. In a 10-inch ovenproof skillet, heat the olive oil over medium-high heat. Fry the garlic until it’s lightly golden, about 1 min. Stir in the tomato paste (be careful about splattering) and fry for 30 seconds, reducing the heat as needed to prevent the garlic from burning.

Step 2–Add the beans, water and generous pinches of salt and pepper and stir to combine. Sprinkle the cheese evenly over the top, then bake until the cheese has melted and browned in spots, 5-10 minutes. If the top is not as toasted as you’d like, run the skillet under the broiler for a minute or two. Serve at once.

That time I woke up and found myself staring at a radiation gun

Honestly, when the best news that you have to share is, “It turns out, I didn’t have a stroke, probably!” it’s not been the best week.

WhacAMole

The whole thing probably started at the end of September. That’s when I had my last brain MRI. There’s this thing that every cancer survivor knows about called “scanxiety,” and that’s the feeling of unease that comes over you when you have to be scanned for new signs of cancer. My usual way of dealing with scans is to dissociate and tell myself that there isn’t anything there that wasn’t there before, but for some reason I was extra uneasy about this round of scans because it had been too long since I had gotten bad news–not especially functional, I know. Anyway, when the nurse from my oncologist’s clinic called and wanted to set up an appointment to talk in early October, it didn’t come as a big surprise. The scan, it turned out, showed a new tumor in my cerebellum and two tiny, tiny tumors in my brain stem, where you really don’t want tumors, apparently. The good news is that there are some excellent developments in radiation therapy, and now we have radiation robots that are as good as surgery, offering cyber-knife and gamma-knife, if only one’s long-suffering husband and friends are willing to drive one to Hamilton for the treatment. What a time to be alive! And so that is how I found myself in Hamilton for treatment the week before last.

The picture above shows the scene that awaited me when I got off the elevator on the second floor of the Juravinski Cancer Centre in Hamilton. I do not recommend sending any patients to a place that has a big sign that says, “Supportive Care.” For one thing, as a doctor friend pointed out, all care should be supportive. For another thing, for me, “supportive care,” is a euphemism for palliative care. But the doctor was young and enthusiastic. I quickly agreed to come back for the new scan and the appointment to have my face fitted in a new plastic mask to keep my head still during the radiation treatment.

And so I was scheduled for 4 radiation treatments. I did 3 that last week of October, and I felt pretty terrible each time, coming home to moulder on the couch and watch tv. The radiation technician assured me that I shouldn’t be feeling symptoms so quickly, and it must all be in my head. Now, I’ve gotten through a lot by just breathing deep and shutting my eyes–going under for surgeries, countless IV placements, MRIs and CTs, accessing my port-a-cath with a big old needle, spinal taps, etc–but that moment of waking up from a nap to find myself face-to-face with a big radiation gun pointed at my face was up there with the weirder of moments. It probably wasn’t pointed at my face as much as it was pointed at my brain stem, but still.

I had a normalish Saturday and then collapsed on the floor on Sunday morning. I had been feeling weird and went to go lie down on the couch. Next thing I knew, I was on the floor, and The Historian was trying to help me up, having hit my head and lost consciousness on the way down. I helpfully said, “Nwaaa! Nwa! Ma jouwnawu!” R helped me onto the couch, which I was clutching at and told me to look at him, but I couldn’t keep my eyes open. I was hot and cold at the same time and clutching at my fleece. La Neige held my hand while R called the ambulance because I couldn’t walk to the car. The Prophet hovered anxiously for a while and then disappeared. In just a few minutes the ambulance arrived and the paramedics decided to take me to the hospital across town with the excellent neurological ward. I got to be on the stroke protocol! They tried to put an IV in in the ambulance, failed thanks to my tiny veins, and plopped me into the CT when I got there a few minutes later. It turns out that the CT was not conclusive, and I had to stick around for the MRI. The symptoms I was feeling were not to out of the ordinary for someone getting high doses of radiation to a sensitive and small part of the brain, but they were not typical or a best-case scenario, either.

This was the beginning of 2-3 days in hospital. It wasn’t so bad, but I did have doctors and nurses coming around on a regular basis to assess my progress. I had double vision and slurred speech. The speech pathologist put me on a special diet because my swallowing was not great. I could not read or speak or drink tea – OMG, who was I, even?

R brought the kids to visit every evening, and that was nice. In fact, their cuddles made everything better, as you can imagine it would. On Tuesday evening of last week I got to go home. My parents were kind enough to drive up on Monday, and did everything they could to take care of the kids and make sure that I was comfortable. I am mostly better, although I can’t read much and my speech still sounds pretty terrible. I went home on increased steroids, and the MRI seems to show that I did not have a stroke, so, again, great.

It’s been a tough week for all of us, and I am still shaky from all of it. I went to see my medical oncologist yesterday, and he assured me that I am in the best hands that I can be, so I went back to Hamilton today to get my last dose of radiation. That was tough, I even came home with my radiation mask as a souvenir.

I cried in the parking lot and even during my last radiation session, after the technician assured me that crying would not get in the way of the radiation. Now, probably at least half of you who have managed to read this far are thinking, “You’re allowed to cry every day, if you want to!” But it’s a funny thing, it doesn’t actually make me feel better, so I don’t do it all that often. It’s just all so much to put my family and friends and body through. It feels like this is not supposed to be our lives right now. It reminds me of The Bright Hour, the memoir by Nina Riggs about her experience with breast cancer. I’ve written before about how comforting her beautiful prose is for capturing this difficult experience and her amazing attempts to be herself through all of the horror of it, but there is something else, too. And that is the feelings of sadness, of shock. of betrayal, that lurk beneath the surface as you read. She doesn’t come out and say it, but it’s a difficult road to be on, and not one easily put into words.

In search of codpieces in Stratford

At the beginning of last week I came across an article about a sale this weekend at the Stratford Festival’s Costume and Prop Warehouse. Already a huge fan of Stratford, I decided that I needed to go.

My husband, The Historian, was not convinced. “So you’re not going to come home with an armload of codpieces?” he asked.  N, who enthusiastically came along with her family, announced, “I make no promises regarding codpieces!”

Early Saturday I told the kids, “Time to get dressed! We’re going to go shop for codpieces.” When asked, I explained to The Prophet, “It’s a piece of a costume that covers your penis!” Then we sat down for breakfast, but every time we caught each other’s eye we giggled. There was a lot of giggling. Penis, penis, penis.

La Neige asked, “Mom, have you been taking marijuana again?” I hadn’t! First of all, you may know that recreational marijuana was legalized last Wednesday, and, true to Canadian form, nothing dramatic happened. Future historians may note that I received 3 emails from the kids’ school informing me that cannabis is prohibited on school property. Also, there was a spate of articles handwringing over the impact on driver and workplace safety, and there were noticeable disruptions in the supply chain for those of us who acquire it for medical purposes. It prompted some discussions with our children, leading me to conclude that cannabis is simply not at all alluring when you know that your mother takes it for her cancer.  Whew, crisis averted.

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The sale was so great! We waited half an hour in a giant Disney-World-length line to get in, but we got to see costumes and props from many of their productions. We didn’t find anything that we needed, and I deflected the temptation to come home with a costume just because I wanted a piece of Stratford. We got to see the racks upon racks of clothing divided by gender, time period, and article of clothing.

 

 

I am suffering a little bit of non-buyer’s remorse for not coming home with a crazy helmet, those ship masts, or a piece of the floor from that play about the Bronte sisters that I liked so much. Our friends bought a giant–like crib-sized–foam piece of toast, and it was the talk of the sale. While utterly useless, we were told that the company did not fully want to part with it.

The plum torte that we had for breakfast before we went is the New York Times‘ most requested recipe of all time. We also had (it for dessert the night before with vanilla ice cream. It is delicious, gorgeous, and dead easy. According to Smitten Kitchen, the recipe was first printed in the Times in 1983. For the flour I used mix of Bob’s Red Mill All Purpose Gluten Free Flour and almond flour, and it worked fine. I will not link to the original recipe because I’m mad at NYT right now for putting up a paywall for its recipes. Instead, I will reprint below.

(Edit: I’m not opposed to paywalls in general. I believe in paying for media. However, I have been paying for a digital subscription to the NYT for as long as they have existed, and I am mad that my basic digital subscription does not include access to recipes.)

IMG_0664[1]

New York Times Plum Torte

INGREDIENTS

    • 3/4 cup PLUS 1 or 2 tablespoons sugar
    • 8 tablespoons (1 stick) unsalted butter
    • 1 cup unbleached all-purpose flour, sifted
    • 1 teaspoon baking powder
    • 2 eggs
    • Pinch salt
    • 24 halves pitted Italian (aka prune or purple) plums
    • 1 teaspoon ground cinnamon, or more

PREPARATION

1. Arrange a rack in the lower third of the oven. Preheat the oven to 350°F.

2. In an electric mixer, cream the 3/4 cup sugar and butter. Add the flour, baking powder, eggs, and salt and beat to mix well. Place in a 9- or 10-inch ungreased springform pan, or you can use a pie plate or a cast iron skillet. Cover the top with the plums, skin side down. Mix the cinnamon with the remaining 1 or 2 tablespoons of sugar and sprinkle over the top.

3. Bake for 40 to 50 minutes, until the center tests done with a toothpick. Remove and cool to room temperature or serve warm.

Adventures in literacy

Someone wrote kindly to ask how my kids liked sleepaway camp. Basically, they loved it. They got to water ski and mountain bike. They faced down homesickness and had complete freedom over what to eat and were in a beautiful wooded setting. The Prophet is now taking archery lessons with 10 other future Katniss Everdeens. Camp is awesome!

Now we are transitioning to a new school year, and it is clear that you can say anything you want in my house as long as it is related to the Marvel Superhero Universe. We are working our way through a confusing litany of loud, interrelated movies. I need to go to the library and pick up the next one, whatever that is.

We are also reading the seventh and final Harry Potter book. It’s very good. No spoilers, please. Everyone here is technically on Harry’s side, but we really care about the more complicated and interesting characters–Luna, Neville, Snape, etc. I SAID NO SPOILERS.

Obviously, we take our literacy seriously. To this end, I have been making a nuisance of myself by investigating the state of cursive in my kids’ school. The state, it turns out, is confusing. You see, cursive is listed as a skill that students should be able to draw upon in grades 3-5 in the Ontario language curriculum. However, it is treated as “optional” by teachers, principals, the school board, and the provincial Ministry of Education. I know because I have spoken with all of them.

But wait, it gets more complicated. When I spoke to the principal, she explained that there are too many “mandatory” elements in the curriculum for teachers to be able to spend time on “optional” ones. Hmm, that makes it sound like it’s not even an option.

To make matters more confusing, the curriculum dates back to 2006 and has not been officially updated since then. It’s almost as if some people are trying to take cursive out of the curriculum without bothering to actually take it out of the curriculum.

The recent literature that I found seems to suggest that learning cursive helps the brain to develop and makes kids better writers. What literature, you ask? Why, this literature, as summarized below:

  1. Writing notes by hand has been shown to support better learning than taking notes on a keyboard.
    Mueller, P. A., & Oppenheimer, D. M. (2014). The pen is mightier than the keyboard: Advantages of longhand over laptop note taking. Psychological science, 25(6), 1159-1168.
  2. Other types of writing cannot be substituted for cursive, as far as the brain is concerned. Writing in cursive uses parts of the brain that are distinct from what you use when writing in print or when typing on a keyboard.
    Berninger, V. W., Abbott, R. D., Jones, J., Wolf, B. J., Gould, L., Anderson-Youngstrom, M., … & Apel, K. (2006). Early development of language by hand: Composing, reading, listening, and speaking connections; three letter-writing modes; and fast mapping in spelling. Developmental Neuropsychology, 29(1), 61-92.
    James, K. H., & Engelhardt, L. (2012). The effects of handwriting experience on functional brain development in pre-literate children. Trends in neuroscience and education, 1(1), 32-42.
  3. Handwriting instruction results in better writing. Writing by hand has been linked to higher order writing tasks, such as word selection and the organization of ideas. When handwriting is automatic, the cognitive load of writing is reduced so that students can focus on composing their ideas.
    Berninger, V. W., Abbott, R. D., Swanson, H. L., Lovitt, D., Trivedi, P., Lin, S. J. C., … & Amtmann, D. (2010). Relationship of word-and sentence-level working memory to reading and writing in second, fourth, and sixth grade. Language, Speech, and Hearing Services in Schools, 41(2), 179-193.
    Medwell, J., Strand, S., & Wray, D. (2009). The links between handwriting and composing for Y6 children. Cambridge Journal of Education, 39(3), 329-344.
  4. Kids must achieve automaticity, or fluency, in basic skills before they can go on to higher order thinking skills. If they do not do this, their working memory will be burdened with basic skills.  Achieving automaticity requires direct instruction and supervised practice.
    Santangelo, T., & Graham, S. (2016). A comprehensive meta-analysis of handwriting instruction. Educational Psychology Review, 28(2), 225-265.
  5. Cursive writing has noticeable benefits for people with dyslexia and other learning disabilities.
    Berninger, V., Wolf, B., (2009) Teaching students with dyslexia and dysgraphia: Lessons from teaching and science.  Baltimore: Paul H. Brookes, Publishing Co.
    Montgomery, D. (2012). The contribution of handwriting and spelling remediation to overcoming dyslexia. In Dyslexia-A Comprehensive and International Approach. InTech. Available at http://cdn.intechopen.com/pdfs/35808/InTech-%20The_contribution_of_handwriting_and_spelling_remediation_to_overcoming_dyslexia.pdf.

My dear husband is concerned that I may turn into some back-to-basics nutcase. “Don’t you have more important things to worry about?” he asks. More important than whether my children’s school teaches reading and writing? No, not really. Sure, there are other important things to worry about, but more important?

The recipe you need

If the worst thing that happened to me last week was that I bought organic ghee at the supermarket and I got it home only to discover that it was not made from grass-fed cows, then I would be having a pretty good week. So let’s just act like that was the worst thing that happened last week.

Because I spend too much time online, I discovered this recipe for quinoa black bean tabbouleh, which is so nice to have on hand. Plus, gluten-free and dairy-free. Maybe I’ll bring it to a potluck this weekend.

But wait, there’s more! Do you know about chimichurri? It’s like Argentinian pesto. My friend D described it as a “jar of deliciousness.” It’s an herby, tangy sauce/condiment that you can put on anything. My brother-in-law Scott serves it with steak.

We put it on steak for The Historian’s birthday, and then I put the leftovers on avocado for lunch the next day. It also tastes good on potatoes, chicken, and probably shoe leather.

There is disagreement about this online because it looks like it’s usually made with parsley, which is fine, but Scott makes it with cilantro, and it’s amazing.

Scott’s Chimichurri

1/2 c. cilantro, minced
1 shallot, minced
4 cloves garlic, minced
1/4 red pepper, minced
1 medium tomato, minced
1 T salt
1 T paprika
1 T oregano
1/4 c red wine vinegar
1/4 c water
1/4 c olive oil

  1. Combine cilantro, shallot, garlic, pepper, and tomato and mix together. Add salt, paprika, and oregano. Let sit a while – an hour or so.
  2. Add vinegar, water and olive oil. Serve or keep in the refrigerator.

My marijuana experience

One could be forgiven for thinking that if someone lived in a place where medical marijuana was legal, it would be easy to access. One might think that someone would be prescribed marijuana on request if they were experiencing the pain and nausea that goes with Lyme Disease, chemo, and brain surgery, but one would be wrong.

In my experience, doctors have been more eager to prescribe me opiates–which I would rather not take–than cannabis. The first time that I asked for a prescription for medical marijuana, I was told that my symptoms were not appropriate for that, and I was prescribed something else, which I dutifully took. The second time I was told that my oncologist will not prescribe or refer to a cannabis clinic, and I was sent to a doctor specializing in symptom management, or palliative care, and I was prescribed something else. But on this occasion I heard my nurse in the next room arguing with the doctor, saying something like, “I just don’t think it’s fair that all of these patients come in here asking about this, and we won’t help them at all.”

The third time I asked about getting medical marijuana (in May), the palliative care doctor told me that she would refer me to the cannabis clinic, but I should take an artificial cannabinoid that she prescribed in the mean time until the referral went through. The fourth time I asked (at the end of June), the palliative care specialist said that she did not understand why the referral had not gone through yet and she would check on the referral and resubmit it if necessary. The fifth time I asked the same doctor about it (yesterday), she said that she never said that she would submit the referral, but if I really wanted it she would submit it now.

The truth is, I’m a little mad. I’m not even counting the times that I sheepishly asked nurses if they would check on the referral, and they said that they would. I don’t like being on the receiving end of gaslighting just because the medical establishment does not want to prescribe a drug that is proven to work against pain, nausea, appetite loss, and other symptoms that are connected with cancer.

If all goes correctly now, it will have taken me a year to get medically approved marijuana. I am writing this despite feeling lots of shame and embarrassment. Every time that I bring this up, I have to face the weird, implicit assumptions and the feeling of judgment from health care professionals. And if I am experiencing this, then other patients are too.

There are some people for whom a day when you take cannabis is just Thursday, but for others it is a big deal.  Ontario is poised to make recreational marijuana legal and it is so common that Tweed, a leading purveyor of cannabis products, had a promotional tent up at London Pride last weekend. I regularly see their ads when I scroll through New York Times articles. Yet try to be so bold as to ask about it in a medical setting and you get . . . nothing. Literally, nothing.

Here’s something that everyone should know. There is plenty of shame and embarrassment that comes with having stage IV cancer. There is no need to pile more on by passing judgment on patients who just want to try another thing.

Sleepaway camp

That picture there? That’s a picture of my son on the bus bound for camp.

One day you look at your kid, and you realize that they are no longer a little kid. Maybe you saw them playing with their young cousins, or you took one shopping for rain boots and had to get them in an adult size. You twisted and turned your life around for the past decade-plus to raise little kids, and that part of your job is done.

My biggest regret? That we did not mark the kids’ heights on a wall as they grew. I was too OCD to write on a wall, and I figured that I could always do it later because I had their heights. The problem is that sometimes there isn’t a later.

 

We dropped the kids off at the bus for sleepaway camp, and it was hard. They were nervous, we were nervous. La Neige had been there before, so we knew that it is an awesome camp, no worries there. But are they old enough, resilient enough, to manage life without me for a week-plus?

I’ve been reading this book on child development by Alison Gopnik called The Gardener and the Carpenter. It’s all about the unpredictability of parenthood, which I’m trying to make sense of right now:

The first dilemma comes from the tension between dependence and independence. Parents and other caregivers must take complete responsibility  for that most utterly dependent of creatures, the human baby. But they must also transform that utterly dependent creature into a completely independent and autonomous adult. We start out feeding and changing diapers and physically holding our children most of the day, and doing all this with surprising satisfaction and even happiness. We end up, if we’re lucky, with the occasional affectionate text message from a distant city. A marriage or friendship that was like either end of our lives as parents would be peculiar, if not down-right pathological. Children move from a dependence that is far greater than that of the neediest lover to an independence that is far greater than the most distant and detached one.

Now that the kids are at camp, no one needs me, neither actually needing me nor thinking they need me. When I come downstairs in the morning, there is no flash of shadow accompanied by the pitter-patter of small feet going to the bathroom and then dashing back to bed to read, moving like the velociraptors in the first Jurassic Park movie.

On a positive note, camp is something we have chosen. This camp happens to be a Jewish camp, and so I told The Prophet, when he said he was nervous, “One reason we send you is so that you can be surrounded by Jewish people. It’s probably better than a trip to Israel, right?” To which he replied, “There are people of all different religions in Israel.” He kind of had me right there, but it was also not the time to trot out the lecture on my feelings about diversity in Israel.

And as long as we’re being political, there are hundreds of children who have been illegally separated from their parents at the border. I mean, as I write this, there are still hundreds of kids who have not been reunited with their parents. When I found out about this policy, I reacted like someone who had found out that they had a dangerous bug on them. I was like, “Oh my God, make it stop right now.” And while I have not, thank goodness, been forcibly separated from my children, I recently had the other experience with a Lyme-carrying tick.

The thing about parenthood is that no matter how good or bad you are at everything else in your life, you matter more than anything else to this one person. Even an inadequate parent is irreplaceable to their child. We’re driven to have children and to care for children. (Not that I’m knocking my child-free friends, because you guys are awesome, too.) How can the US pursue an illegal policy that takes this thing, this very basic human right, away from one child, let alone hundreds of them?

For my own peace of mind as well out of duty to protect my children as best I could, I reached out to the camp director to find out what the tick protocol was. After all, lots of parents may be worried, but not all of them got Lyme disease from a tick this past May – which I did! As you can imagine, this was absolutely mortifying to La Niege. I had to explain to her that I could not possibly be the most worried Jewish mother that the camp director talked to that day.

Back home, I wallowed at the thought of having grown children. I called my friend N, a skilled and compassionate mental health care provider. She responded by singing me the beginning of “Sunrise, Sunset” from Fiddler on the Roof, reminding me that my concerns are neither new nor original. Thanks a lot, N. Out of sheer concern for my emotional well-being, she agreed to go to the movies with me.

I heard a funny quote on the episode of GLOW that I watched on Netflix last night. Narrating events in the ring, a sneering announcer asked, “And what’s a mother without a daughter? She’s just a person!”

Leggings are not pants

It’s summer, so I just read yet another article online wringing its hands about dress codes as applied to girls’ dress. These articles come out every damn year, and I have something to say about them.

A few weeks ago my daughter was getting dressed for school, when I looked at her and sighed deeply before saying, “Are you really done getting dressed? You know that I don’t allow you to wear leggings to school.” We have few rules about dress in our house, but what we have is motivated by my belief that children should look appropriate. This translates to meaning that leggings are not pants. If you choose to wear leggings, then you wear something like a skirt or dress over them. (Or shorts, which is a look that also fits the letter of the law in this case.)

La Neige responded by pulling her tshirt down as far as she could and saying, “But I thought my butt was covered by my tshirt?”

I looked at her and thought, she doesn’t look terrible. Actually, she looks fine. The leggings were not super-tight, and she can probably get away with wearing leggings and an oversized tshirt. But then I remembered that this was not about looking good or attractive, it was about looking appropriate for school, so I laughed at her attempt to pull her tshirt over her butt and said, “Could you put a skirt on over that? Then you won’t be wearing leggings as pants.”

So there’s the key, it’s about looking appropriate for school. Yes, I’m a bit of a dinosaur who clutches her pearls and says, “Kids should dress appropriately for school!” True, I was one of the last people on earth to accept that it was okay to wear black or white to a wedding, and it came as a shock in the ’90s when people started wearing jeans to work. I was a teacher back in the day when all girls’ tshirts were too short to cover their belly buttons, and I found this strange. The other side says that if it is a distraction for girls to display their belly buttons in school, then it is the fault of those who are looking, not of the belly buttons.

This may be true, but I still want to believe that there is such a thing as dressing appropriately for school, and that school is a place where you go to learn and to speak out with words and not where you go to be looked at. My daughter complains about having a dinosaur for a mother, but I think it is a relief for her to know that there is zero pressure on her to look attractive for school.

A few years ago my kids’ school council was debating the school dress code, and some of the mothers pointed out that it’s hard to find girls clothes that meet the dress code. Girls shorts are short and summer dresses and tops usually have spaghetti straps. Yeah, so retailers make money off of selling clothes with less fabric for girls. Duh. I mean, my daughter’s shorts might be made of less than half the fabric of some of my son’s, even though he is 3 years younger.

Being a brilliant – if ashamed – consumer, I snap up longer shorts when I can find them and occasionally buy boys’ shorts for her. Disclosing this caused one mother to say with disdain, “My daughter would never go for that.” If I remember correctly, this was the same mother who argued that the school should not be enforcing any dress code because the parents’ judgement is paramount: I would not let my daughter go to school looking like that.

In this moment, I realized that this mother and I were speaking two different languages. I wanted a dress code that supported my desire to help all children look appropriate for school. She seemed to want a dress code that supported her goal of having her daughter look attractive for school.

I don’t speak that language, and I don’t know how to. All I know is, I want a dress code that supports all kids in looking appropriate. To me, appropriate means that underwear is not visible in school, and kids wear clothes in which they can play on the playground, participate in gym class, sit with limbs akimbo in class, and generally move comfortably, all day long. Also, leggings are not pants.

[Edited to add: The more I think about it, the more I realize that my thinking about girls and how they present themselves at school is influenced by Peggy Orenstein’s book Girls and Sex: Navigating the New Landscape, which I enthusiastically recommend. An interview with the author is available here.]

Second opinion, part 2

So I got a second opinion at the Dana-Farber Cancer Center last fall. If I had been expecting something big and different from my consultation there, I would have been disappointed. If, like my husband, I was looking for confirmation that things were already going as well as possible, then I went to the right place.

Once it became clear that we were definitely going to Boston, a number of things happened. For one thing, my plans became divided into “before” and “after.” It became something big that was going to determine what happened next. Thanks to the connections of a family friend, I was able to get an appointment with one of the world’s top oncologists in the team there. My own terrific oncologist here in London had done a fellowship there, and facilitated matters helpfully, since the transfer of medical records is still supposed to happen by fax (???), thus upsetting my geeky husband for, like, the rest of time. Quite a few people, from the neurosurgeon to the oncologist, mentioned that they were curious to hear more about what I learned in Boston.

It’s always a pleasure to go back to Boston! So we drove there, stopping at Rob’s parents’ place one night so as to stay in Canada, where I have actual health coverage, for as long as possible. Then our friends Kathryn and Ned generously had us stay with them in Cambridge, from which we were able to walk, on a gorgeous fall day, to the Dana-Farber Cancer Centre, which I had by then come to think of as the Centre of the Universe. As we turned onto Longwood Avenue, it was funny to think about how a street that for me had always signified a busy place to be avoided, was a busy mecca for patients from around the world. Here, it seemed, every building was named after an important donor, and deliverers of care rushed off to their important jobs.

From there we went to the International Patients Office, which is I guess where international patients go. As we listened to the families around us speaking Mandarin and Arabic, it was a nice reminder that people come from all over the world to consult at the CotU. Then we had to go up to the billing office and pay for our consultation because money and health care must never be separated in the U.S. Finally, we went to the actual breast cancer floor and met with a fellow to go over my medical history, before meeting with the medical oncologist and his coterie of fellows.

As I wrote earlier, there was not a whole lot new in these meetings. I had to explain to the fellow who took my health history that Ontario will not pay for more than 2 lines of treatment, so the decision to switch to a new one was a big decision. He was surprised at this, having seen an American woman just that morning who was on her SEVENTH line of treatment. Everyone was impressed with the quality of the records that had been sent from Canada, and everyone wanted to oooh and ahhh over my excellent brain surgery. “What brain surgery?” the fellow joked after running me through the requisite assessments. Also, the fact that I walked there from Cambridge was a matter of some comment.

In fact, no one knows what to do about these troublesome brain tumors, I was told. Previously these have been attributed to the “blood-brain barrier,” which was viewed as not letting drugs in to the brain. But the oncologist told me, “We’re rethinking the blood-brain barrier and why the brain seems to be extra hospitable to tumors for patients like you.” There are quite a few clinical trials happening at CotU right now, and none of them are quite right for me. I’m doing too well on the standard of care to warrant doing anything different. But! I can come back when I’m not doing as well.

I find this a fairly reassuring place to leave things, since I learned that I’m getting very good care and doing well, and that I’m living at the edge of knowledge right now, with my body getting the best that medicine has to offer, and clinicians, I hope, working on developing more treatments for people like me.