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.)

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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!”