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.

Jill

In my imagination, at least, Jill looked a bit like me. She also looked like Erin Karpluk, the Canadian actress who starred in Being Erica. She had a laugh that lit up the room because it was loud, sudden, and bold.

We met when I was teaching history and social studies at Newton North High School. My partner from across town had to bow out of a trip to China, so Jill stepped in, fluent in Chinese, travel, and Newton education.  Jill was easy to travel with, or perhaps ideal. She would fearlessly try food, experience, or social interaction. She simultaneously had an open mind and a sense of humor. In my mind, we were always friends, even as our lives took us in different places.

After Jill moved first to New York and then to London, England, I made a point of seeing her when I could and staying in occasional touch.  Jill earned a degree in social work and had a vibrant social life. She organized domestic workers in New York and sought out new adventures in the UK with her partner of many years. We kind of lost touch but also lost opportunities to reconnect as life got busy, and my moving and having two small children did not help.

One night when I was doing dishes, The Historian came in and said, “Um, do you know what’s going on with Jill?” to which I said that I did not. “I think she has cancer. Actually, I think she may have died.” I had to sit down. A little internet searching showed that this was, indeed, the case. In the time since I had lost touch with Jill she managed to be diagnosed with a rare and aggressive cancer and to die. I learned of her death only as the 1-year anniversary of her death approached, as friends commented on FaceBook that they were looking forward to gathering in commemoration of Jill. My searching did not reveal much, or maybe I could not stand to seek out more information, so sad and ashamed was I not to be more a part of Jill’s life in those difficult late times. I had always thought that we would reconnect at some point, but instead I spent a few days of my early 40’s wandering through life thinking, “I will never get a chance to tell Jill how much I loved her.” I hope she knew, but I doubt it.

This taught me many things, like that life can be fleeting and terribly unfair. My searching showed that Jill died surrounded by caring people that she loved, reminding me that my own piece of her life was probably quite small and not terribly significant. At the same time, she inspired me to later shoot my mouth off to various friends, telling them, “If I ever get cancer, I’ll be sure to let you know!” Well, that was brilliant. Because now I have cancer, and now you know. I never thought I was going to have to make good on that brilliant promise.

I am very grateful to our mutual friend Annie for sharing with me more about Jill’s life. A few months ago I even mustered the presence of mind to send her family a sympathy card – proof that it is never too late or the wrong time, or at least that’s what I believe. But there’s only so much strength that I have. I remember the last message that she sent me, and I do not have to look it up again: “I was at the theatre last night, and I thought that I saw you!”

Why Get a Second Opinion?

It’s basically the difference between being a grateful user of public services and being a consumer. This is the second opinion in Canada vs. the U.S.

When I was diagnosed with breast cancer, I learned that second opinions aren’t really done in Canada, or at least not if you have confidence in your doctor(s). First I was diagnosed by my excellent family doctor, then sent to the breast care center for biopsies and further diagnosis, then to an oncologist at the local cancer program for more specific diagnosis and treatment.

As I understand it, it was a matter of the luck of the draw that I was paired with a medical oncologist (MO) who was caring, conscientious, and well-versed in the latest treatments. After all, I saw a lot of doctors (family doctor, surgeon, interventional radiologist, radiation oncologist, pathologist, etc), but it is the medical oncologist who is mainly responsible for my care and who has seen me often enough to likely be sick of me and the plaid flannel dress that I have come to favor, especially in cold hospital rooms.

An American friend who was treated for cancer locally many years ago explained, “Second opinions are not really a thing here. People will get squirrelly if you ask for one.”

And yet, all the Americans wanted to know if I was going to get a second opinion, as if not getting one would be irresponsible. “I’m pretty sure that the second opinion is that I still have breast cancer,” I noted.

But the fact is that only about 6-10% of breast cancer patients have metastatic breast cancer at the time of diagnosis (de novo). Being diagnosed at age 44 puts me well below the median age for breast cancer patients, an age where cancers are more likely to be aggressive, but patients are more likely to respond well to treatment. I read through the treatment guidelines and noted that they are the same for women with breast cancer, regardless of what age they are diagnosed or whether or not their cancer is de novo or a recurrence. It seemed to me that these variables introduced some wiggle room into the question of how to treat me.

In addition, we got convincing email from our American friends noting that for many American oncologists, a second opinion is a standard practice and a sign of having made a thoughtful choice when you do sign on for treatment with your oncologist. The principle of leaving no stone unturned as you think through what kind of diagnostic testing and treatment makes sense for you makes sense, even in the Canadian single-payer sensibility.

So we went to Toronto and met with a MO who has treated hundreds of patients like me, and she did not have anything new to suggest. We went full steam ahead with the standard chemotherapy treatment and, lo and behold, I did have a great response, even what is called “a complete response,” meaning that my cancer was undetectable. Until it wasn’t anymore, and I found out that I needed brain surgery.

Fortunately, my MO was supportive of getting a second opinion, something that a friend has suggested as generational. Under insistence from my parents and path smoothed by one of their friends, I scheduled an appointment with the excellent breast cancer team at Dana-Farber Cancer Institute in Boston for right after my brain surgery last November.

To cut to the chase, how did I process this question of whether or not to get a second opinion? And why does no one seem to talk about it, at least in Canada. Here are some of my thoughts.

REASONS NOT TO GET A SECOND OPINION

  1. Treatment will be the same. If treatment for your condition is well-covered by clinical guidelines, then a second opinion will probably yield more of the same plans and decisions. The same is true for the diagnosis, if it is not likely to change or if the original testing is complete and thorough.
  2. Your case is going through a tumor board. Yes, it’s actually called that, when a lot of different doctors in a cancer centre get together and review your case. They talk through the ambiguities and everyone gets the benefits of multiple minds focused on the case. This is an example of how medicine can be a very collegial and collective enterprise, and of how you can have several different clinicians’ problem-solving applied to a problem without ever leaving home.

REASONS TO SEEK A SECOND OPINION

  1. Your doctor is a quack. Thankfully, none of my doctors have been quacks, and the world “quack” amuses me plenty. However, I think the specter of the quack hangs over any patient who wants a second opinion, whose doctor has to think, “Does this person think I am a quack?” while the patient is also thinking, “Does this doctor think that I think that s/he is a quack?”
  2. You are part of a fast-changing field. Knowledge about cancer is changing every day, and new clinical trials pop up every day. In many cases, those who seek a second opinion feel like they need to find out what the state of knowledge is elsewhere and whether their case would be seen differently there.
  3. Your case is somehow different or special. For me, I was diagnosed at age 44 for a cancer in which the median age is much older. Should the fact is that I am able to tolerate more aggressive treatment be factored in to my treatment plan? Should the extremely aggressive nature of my cancer?

Notice what is not on either of these lists is, “You have confidence in your doctor.” I assume that this is true either way, and I also assume that more than one good doctor might have different views on the same case.  I am assuming, in short, that the doctor is not a quack.