Jill

In my imagination, at least, Jill looked a bit like me. She also looked like Erin Karplunk, 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.

Vocabulary Lesson, Part 2

Building on my earlier Vocabulary Lesson post, I have some more advanced vocabulary here. It’s a little technical, but it helps to spread some knowledge around that better reflects the state of what cancer patients go through today.

Prognosis – this is the third rail of conversation with cancer patients. Conversationally, prognosis means what physicians predict what is going to happen to the patient, and when. However, physicians know that they are terrible at this, and good doctors will refuse to give prognoses all the time. I have heard a lot of cancer patients complaining that when (probably well-meaning) people ask about their prognosis, they feel like they are looking for the “expiration date” that must be stamped on them somewhere. You know, like the perfectly nice person I see in the grocery store who brightly says, “But your prognosis is good, right?” Or the hairstylist who says, after I explain why I lost all my hair, “But everything’s good now, right?” Or the other hairstylist … what is it with hairstylists?  Maybe I’ll write a whole other piece about this one, but the bottom line is that no one can predict what your prognosis is because surprise is always part of the picture. I can tell you what the median survival time is for patients with Stage IV breast cancer, but that won’t tell you much about my case.  I offer this as the only topic to be avoided with cancer patients.

First Line/Second Line Treatment – this was a new one to me, but it’s extremely important. The First Line Treatment in chemo is whatever your oncologist puts you on first, usually according to whatever the clinical guidelines tell him/her to do. When that appears to be not working anymore, because cancer finds a way around most treatments, s/he puts you on the second line treatment. In Ontario, the government funds two lines of treatment, so the decision to switch from one to the next takes on a lot of clinical significance.  If I’m reading the NCCN guidelines correctly, the largescale data says that there’s no additional benefit to treatment beyond 2 lines of therapy, so this is Ontario’s reasoning.  It also takes on emotional significance for the patient, who may be known to say things like, “I failed Ibrance after 8 months”! But never, “Ibrance failed me.” Discuss amongst yourselves.

Targeted Therapy – not all treatments are chemotherapy. Increasingly, cancer patients on targeted therapies that aim to interrupt specific traits in cancers, such as proteins or hormones, rather than attacking all cells, as chemotherapy (cytotoxic) drugs do. For example, for HER2-positive patients like me, who are between 15-20% of breast cancer patients, we are likely to get Herceptin and Perjeta, which are HER2-targeted drugs, at some point. These drugs are considered very good and have dramatically increased the prognosis of patients like me.

Second Opinion – this is also a funny one. A second opinion is when you go to another professional to find out how they see your case. I learned from experience that second opinions are often verboten in Canada because why would you imply that you weren’t already getting the best possible treatment in our amazing OHIP system? The tricky part is that I am American, and my family still resides in the U.S., where second opinions are basically required of everyone and if you don’t get one you might as well announce to anyone who will listen that you don’t care about your own health or the quality of your care. This is one of the many subtle differences between Canada and the U.S. that are very easy to overlook until you bump right up against them. Yeah, more on this one later, for sure.

Back in December, there was a lot riding on my laparoscopic surgery.  You see, I had this growth that was showing up in my pelvis, and no one could say for sure what it was unless we got a sample to the pathology lab. Was it cancer, showing that something new and dangerous was growing in my torso? Or was it just one of those things that grows in your pelvis? An attempt at an ultrasound-guided biopsy did not work out, but if it proved to be cancer, then we would have to move from a first-line treatment to a second-line treatment. So I had my ovaries removed — as one does — and learned that the growth was actually just regular benign fibroids, so I get to stay on my first-line targeted therapy, for now.  Woo-hoo.

A Vocabulary Lesson, part 1

From the always-wise Susan Gubar:

For most people with cancer, life has conventional stages that I can sum up with acronyms: B.C. (before cancer), A.D. (at diagnosis), S.S.N. (some surgical nightmare), RATS (radiation therapies), ICH (in chemotherapy), followed by IRS (in a remission of some number).

Like a growing number of patients today, I inhabit a less familiar state: maintenance. This new phase presents a viable alternative to remission which, I sometimes feel, is not everything it is cracked up to be.

recent article in the New York Times chronicled quite vividly the author’s experience of trying to communicate with people about living with stage IV colon cancer. This article got a tremendous response from people, and it made me realize how lost we all are when it comes to talking about cancer, or about any chronic illness really. We live in a culture where it’s not okay to be ill in public, but at the same time we have this amazing growing ability to diagnose people as chronically ill when they might have previously looked “normal”. And we have a growing disabilities rights movement that is all about making sure that everyone is accommodated in public. So we have sick people walking around looking well, which probably isn’t a new thing at all, and no one knows what the right thing to say is.

The bottom line is that there is no right thing to say. The ability to let go of the need to say the right thing is a wonderful gift, I’ve discovered, as is my tolerance for awkwardness. I am so grateful for the many people who have braved being awkward or inappropriate when they did not have the ‘right thing’ to say was but did not let that stop them from reaching out to me or being with me or my family.  And, luckily, once I threw away any semblance of propriety I opened myself up to hearing what was on people’s minds. If you’re looking for a way to do this, it’s always helpful to acknowledge that some things are terrible, that you’re sorry that your friend is going through this, that you feel sad or anxious, etc.

In the spirit of helping, I put together a list of the some of the terms that are important to cancer patients but where we don’t seem to be working from a common definition.

Cancer – I gave myself an easy one to start with. Cancer is the growth of abnormal cells, mutated from the patient’s own cells. There are many – perhaps countless – types of cancers, so when I was diagnosed with breast cancer, I learned that it has both types and stages, which change how you might treat it. Everyone can have their own theory of what causes cancer, but it’s still pretty mysterious. For example, the majority of breast cancer patients, like me, do not have any ‘risk factors’ in their history such as smoking or having a family member with breast cancer.

Guidelines (also Medical Guidelines, Clinical Guidelines) – this is a really important one. During the past few decades, there has been a movement towards Evidence-Based Medicine (EBM) that analyzes published research in different fields to come out with guiding statements about how patients should be diagnosed and treated.  They are often pointed to as the “gold standard” in knowledge of a particular condition. In the case of cancer, my understanding is that doctors tend to follow the guidelines set out by the National Comprehensive Cancer Network. This means that there is something in writing that should conform to the empirical evidence of as many cases as possible. In my case, Ontario tends to adopt the recommendations of NCCN, resulting in top-quality care available to patients like me. The downside is that guidelines devolve from large-scale research, so they may not address key variables in your specific case (like, for example, the fact that I was diagnosed before the age of 45 with stage IV breast cancer). Also, guidelines lag behind the actual research, so in some cases guidelines may be behind the latest treatments for your particular case.

NED/NEAD/No Evidence of Active Disease – this is a key term for people with stage IV cancer because for most oncologists there is no ‘remission’ for us. Instead, the goal is to get to a state where medical science has beaten back any evidence of disease. For many patients this is Holy Grail of cancer treatment because NEAD status means that everything is working. But achieving NED status does not mean that cancer is gone, as Beth Caldwell wrote: Hope is like a rope that kind people who just don’t get what metster life is like will throw down to you and say, ‘Here, climb this.’ But the problem is, the higher you climb, the harder you fall. And you WILL fall. NED doesn’t mean cured. The cancer is still in there, trying to figure out how to overcome the drug I’m on and start growing again.

Stability – much like NED, this is seen as a good thing. When scans show that tumor(s) have not progressed, then a patient is regarded as being in a state of stability. For most oncologists, like mine, this is seen as a sign that treatments are successful because the cancer is in check.

Progression – this is when cancer is growing where it is or is detected in a new spot. This is generally seen as cause for different action because previous treatments were not totally working.  I’ve come to think of progression as being the thing that is around the next corner. You never know what it’s going to be. I never thought it would be brain tumors, but for me it was brain tumors.

Last fall, I went from a state of NED to progression very quickly when tumors were detected in my brain. Then I had successful surgery and radiation followed by a period of recovery, which is where I still am. Since the beginning of this year, I’m back on maintainance therapy, getting an infusion at the chemo clinic every 3 weeks because the guidelines say that that is the right thing to do. Apparently, there is this thing called the blood-brain barrier that means that drugs that are working from the neck down don’t work the same in your brain. Previously, researchers thought that the brain contained a barrier that keeps the chemo drugs out. Now, they’re not so sure why it is that the brain will grow tumors that they body won’t. The latest crop of cancer drugs have been controlling the growth of cancer well enough in the body that we are, apparently, seeing more and more brain tumors because these drugs just don’t work as well in the brain. When I was diagnosed with breast cancer I read that I had less than a 1-in-5 chance of brain tumors, now it’s looking more like 1-in-2.

 

“Who is your audience?”

When you are in our forties, it’s probably normal to spend your birthday thinking about death. But when I think about death, I really think about death, and then I think about how that’s just not comfortable for most people I know. In fact, thinking about feelings is not very comfortable for most people.

“Who is your audience?” asked my husband and most thoughtful reader recently.  The question made me think. The audience is, of course, you, if you are reading this. My goal is to ask the questions, “What does it mean to live well with illness? What does it mean to live meaningfully and critically with illness?”  So I guess that my audience is the people who care about the answer to these questions.

Plus, I’m a social scientist at heart, so my answers to these questions are grounded in the real things that we do every day, in how they make me feel, and in what they do to our larger politicized worlds. So if you’re still reading this, then you are my audience. You might be like me, someone who is living with and thinking about illness. Or you might be like the many people in my life who are helping someone they love deal with illness and are curious about what that involves. Or maybe you are both, or somewhere in between.

I remember when I was first diagnosed with breast cancer, one of my first questions was, “What is this thing, and how do I live with it?” I could not bear to look at the websites for breast cancer-related organizations and support services because they did not seem to understand who I was. For one thing, they most often featured photographs of breast cancer patients as happy, attractive, white, thin, affluent women who were facing illness with a sense of positivity and uplift. Recently I attended a lecture by a PhD student who had done a critical discourse analysis of several breast cancer survivorship-related sources. She noted how prevalent images were of women with their families, as if these pictures say, “Women are important because they have families.” Not, mind you, because they are people. Maybe this is one of the things that I was responding to.

The few organizations that were different were like a breath of fresh air, and I responded to them immediately. These were organizations like ReThink Breast Cancer and The Underbelly and the Metastatic Breast Cancer Network, organizations that have a stated mission that includes serving women like me with Stage IV breast cancer and who understand the breast cancer experience as one that is complicated, scary, and never-ending. It’s an experience that my brain seems to be always processing, whether I want it to or not.

I also discovered the blogs, memoirs and discussion boards of breast cancer patients. This was a source of bracing honesty, speculation and meaning-making. One of the first blogs that I came across, for better or for worse, was Lisa Bonchek Adams’ account of her own experience with breast cancer, which ended with her death in 2015. Lisa was a great writer and a very woke patient who also had training and experience as a social worker, so her blog reflected the concerns of someone who knew what other patients worried about. In Reading and Writing Cancer, Susan Gubar has written about the influence of Adams and her blog as an important service to patients, so no need to retread here. I have already noted that chronicles like hers have helped me to understand that there are so many ways that this disease can go, and there are so many ways that we can respond to it, and they are all legitimate. The web of stories that we offer up to each other is a way of sharing our experiences and acknowledging the commonalities in our very different predicaments. I am eternally grateful to all of the people who make their experiences public to increase the visibility  of this experience. Thank you, Beth Caldwell, Teva Harrison, Nina Riggs, Ann Silberman, and many anonymous others.

Last winter there was a CBC documentary called Cracking Cancer that followed the work of the POG clinic at UBC. For the documentary, several stage IV cancer patients allowed themselves to be recorded and interviewed at some very vulnerable moments so that members of the public like me could watch them and say, “So this is what it looks like to lives with a very bad cancer diagnosis as it progresses.” My mother watched the documentary at my urging, and said, “Look at how this normalizes the experience!” even though watching it was not easy and was not meant to be easy.

On a personal level, a few of the women I know have shared their own intimate experiences of illness with me. I won’t expose them here, but I just want to say how much it has meant to me when they have shared what it is like to live with a body that is somehow marked as weak or defective or non-obedient. Their experiences are with me always as I think about what it means to live with illness. Within the circle of my acquaintances, I have friends who have led by example as they have coped with chronic conditions that include: arthritis, diabetes, cancer of various types, asthma, COPD, heart disease, IBS, celiac disease, infertility, various complications of pregnancy, and who knows what else.

The need to keep the image of living with illness or disability a dark and shameful secret is one of the things that drives me. After processing my own illness, I came to realize that I have not done anything wrong, that being ill and dying are just part of the human experience, and if I try to keep them secret I’m stigmatizing myself. So I put my own embarassing or unattractive or unstandardized experiences out there to try to widen the circle of what kinds of experiences are out there. I’m hardly the first, but more stories have to be visible to normalize what is actually a very normal experience. Thank you again, Renee Lansley, for introducting me to the work of Rosemarie Garland-Thomson, who draws out connections between feminism and disability. She offers the Misfit as an image of the person whose body does not conform to the rational, male ideal, which, make no mistake about it, is a feminist mission.

And, of course, many disabled people write outside of the standard journals because they lack the institutional capital that makes them academic feminists. More recently and more colloquially, my attention was drawn to a New York Times series on living with disability. This recent article by Elliot Kukla has a lot of good things to say, but I picked this to share:

Like many people, I had once measured my worth by my capacity to produce things and experiences: to be productive at work, share responsibilities at home, “show up” equally in my friendships and rack up achievements. Being sick has been a long, slow detox from capitalist culture and its mandate that we never rest. Slowly, I found a deeper value in relationship beyond reciprocity: an unconditional love and care based in justice, and a belief that all humans deserve relationship, regardless of whether we can offer anything measurable back. In these discoveries, I’ve been led by other sick and disabled people, whose value had always been apparent to me. Amid the brilliant diversity of power wheelchairs, service dogs, canes and ice packs, it’s easy to see that we matter just as we are.

 

Lesson #3: Do not tell your children that everything will be okay

When I first found out that I had breast cancer, first I freaked out quite a bit. I don’t want my kids to have to have a sick mom. Or even a dead mom. But then we had to decide what to tell our children. Luckily, it was summer and they were scheduled to spend a couple of weeks with relatives, giving us some time to plan.

When they came back we sat them down on the couch and told them that I had been diagnosed with breast cancer and that we were facing a difficult and uncertain year of treatments ahead.  We showed them these videos and told them that they were allowed to ask any questions that they wanted, even though we might not be able to answer all questions that they had.

Even back then, knowing only the partial story – I had not yet completed my “staging” – we resisted the urge to tell them that everything was going to be okay.

Pro Tip: Do not tell your children that everything will be okay. 

This was difficult because as parents we’re trained to keep telling our kids that everything will be okay, but really there is no way to guarantee to kids that this is the case. Even when we thought that my cancer was probably curable and survivable, we knew that the odds were not perfect.

Pro Tip: Do not tell your children that everything will be okay when it is obvious that it is not. 

Also, as soon as kids are old enough to grasp that you have a serious life-threatening illness, they are old enough to define “okay” for themselves. In truth, my kids will be okay, and they are supported better than many. They have, at the moment, two parents, four grandparents, eight terrific aunts and uncles, seven first cousins that they love, two second cousins that they see regularly, and countless friends and relatives who love them. Most of these people will be there for them for a very long time. They live in a peaceful, orderly place, where they always have enough to eat, a roof over their head, and access to excellent education and health care. In many ways, they are ahead of where I was at their age, so you can see that they will be okay in the big picture. At the same time, it would be unfair to tell them that it will be okay.

We consulted a few of the experts on family communication within our personal circles, and guess what – there’s no good way to spin this! It turns out that we essentially did the right thing. Experts like my sister, a clinical social worker who has seen many families through crisis or our local friend who has a history of working with troubled children, will say helpful things like “know your kids”, “always tell them the truth”, “have a good relationship with your children”, “maintain open lines of communication”, “know that when kids are acting out that’s probably a sign”, etc. A few good pieces of advice that we received:

  • Kids need to hear something many times for it to sink in. Like most pieces of advice, this is not just true for kids.
  • Keep routines the same, as much as possible. This is a good guideline to live by, especially after the principal at the kids school told them that it would be fine for them to be absent if they need to. (Don’t tell the kids she said this.)
  • Remind kids that they are loved. Check.
  • A dear friend and amazing librarian scoured up some of the best titles she could find. There are good books for dealing with early stage breast cancer, and good books for dealing with bereavement, but I don’t think there are good books for dealing with chronic illness or late-stage cancer. Still looking, though inquiries to the MBC community have yielded nothing.
  • Don’t push the talk therapy if they don’t seem to need it – this is intrusive. We did send La Neige to some sessions with a therapist, and that was helpful but not a magic answer.

A dear friend of mine is currently a nurse intern at a Very Big Name Research Institution in the US, and she just completed a short course on end-of-life care that is both practical and reflective of all the latest research. What did State-of-the-Art End-of-Life Care Course say about death and children (besides that, I’m not kidding, you only get one shot at death so you had better do it right)? According to the latest research, the more children are involved with a parent who is actively dying, the better for that kid. They will thank you later. Well, no, they won’t, really.

This little revelation happened to coincide with a bad time for me, when I had to drop everything to lie down and cry because I had no energy for my normal life and because my head just hurt too much. My daughter got to see me cry, so obviously we are all about doing the right thing here.

Meanwhile, The Prophet, who gained his nom du blog partly from the etymology of his name and partly from his innate spirituality, said when told about my cancer, “You tell me that I shouldn’t be sad, but I don’t feel like being happy.” When I was first diagnosed we had our wonderful Rabbi D over to just remind us that she is there for them. She blessed two mezzuzot that we had put off hanging on the front and back doors, so now every morning The Prophet pats his hand on the mezzuzah and then kisses his hand on the way out. At first I thought that this was just a fluke that I witnessed, but then I saw that he does it every day, even when he’s in a hurry. I asked him why later, and he said, “I don’t know why I do it, but the day just wouldn’t feel right if I didn’t.”