For Jo and John: Let’s put an end to the caricatures

According to the American Cancer Society, more than 15 million people in the United States have been designated as cancer survivors in 2016.

A few days ago, I met one of those survivors, a woman I’ll call Jo, at the gym when I was meeting with a staff member there. Jo came over to say hello when the staff person called her over for an introduction. She too worked at the gym.

As she leaned over to greet me, I immediately noticed Jo’s bald head and knew instantly, in the way we sometimes just “know,” that her hairless condition was not a fashion statement. Unlike that of the male staff member I’d been talking with, a bald head on a woman is often a telltale sign of cancer treatment.

Jo looked vibrant, was energetic, and seemed happy to chat for a few moments. In our short conversation, the staff member noted that Jo was being treated for cancer, at which point Jo interjected “breast cancer,” and quickly summarized the treatment she’d begun: surgery, chemotherapy, and radiation. The too-common triumvirate of cancer treatment.  When she mentioned that she had just finished her rounds of Adriamycin, was moving on to Taxol, and would then have radiation, her words raced down the circuits in my brain, which arrived at the conclusion: triple-negative.  The same type of cancer I had.

I didn’t confirm whether this was in fact what she was dealing with, but I did nod in recognition, explaining that I had gone through that same treatment and, holding up crossed fingers on both hands, was doing fine. She grinned, turned to the staff member, and joked about how someone had given her a breast prosthesis that squeaked. The staff member commented that Jo’s dog would certainly like that, and they both laughed. The conversation, brief as it was, was filled with laughter and jokes, and Jo went off down the hall in good spirits.

The last few weeks have also brought attention to another cancer survivor: Senator John McCain. His scenario is vastly different, not just because of his age or his previous diagnoses of melanoma. The glioblastoma discovered in his brain will, not too long from now, take his life. Nonetheless, he rallied and returned to Washington to cast a vote on the current proposals for revising our healthcare system.

These are the public faces of cancer patients — the ones that we, the public, expect, even demand, to help us conquer our own fear of a frightening illness.

Despite their outward appearances, however, we can’t pretend to know what either of these people – or any of the other 15 million cancer patients — look like or feel in their private moments because those aren’t the moments we see – or want to see. Those moments would render us fearful and helpless. In my own slog down Cancer Road, I can tell you there were many moments of terror and times when I just had to sit down and cry. But in public, I was that smiling, upbeat woman, making jokes about how the glow in my skin from the Adriamycin probably meant I was radioactive.

Are there moments of despair for Jo and John?

Very likely.

Will we see them?

Probably not.

What we also see is the public’s reaction to people given a cancer diagnosis. Well-meaning attempts at encouragement and humor in the case of Jo. Demands and expectations of performance by Senator McCain.

I admit to being slightly put off by the dog-toy joke, as it seemed to make too light of what I know to be a terrifying situation. But Jo didn’t seem bothered; she was even engaged in the joking. But that was her public face. As she walked away, I wondered how quickly the smile evaporated from her countenance.

I found myself angry at the responses to Mr. McCain’s announcement, which were of two varieties. The media focused on the theme of the soldier returning to battle and therefore deserving of the spotlight, which burdened McCain with having to play the hero. Many people posting on social media, however, were quick to disparage him for his stance on political issues, which seemed a version of kicking the man while he was down.

In both cases, the cancer diagnosis erased the individual and the focus became how each one was behaving in light of it. What society expects from cancer patients is the caricature – the upbeat smiling woman, makeup in place, chattering brightly about how well she’s doing. The upright and serious man, carrying on heroic business in the face of adversity.

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Chain Reaction

chainlinkIf you’re unfortunate enough to have to go through chemotherapy, the oncologists and nurses who support you through the ordeal are pretty good about telling you what to expect. The infusion nurses, especially, know the realities of chemotherapy and are wonderful supports.

Hair loss, nausea, fatigue.  The list of side effects can be pretty lengthy.

They may even tell you how each chemical dripped into your veins can affect different parts of your body. Doxorubicin is hard on the heart and taxol, if it doesn’t cause an immediate and deadly allergic reaction, can lead to neuropathy, which appears as tingling, numbness, or even pain in fingers and toes. Fortunately (pain-free fingers crossed), I seem to have dodged those particular problems.

In general, the reports tracking the side effects of chemotherapy stop at about the same time the clock stops on tracking survival after cancer – 5 years. I haven’t yet investigated why 5 years is the magic interval, but if patients make it to that point without a recurrence of cancer, they are usually considered to be in long-term remission and the oncologists turn their attention to those just entering CancerLand. Follow-up visits to the oncologist might cease entirely, and your health care reverts to your internist or primary care physician.

But that doesn’t mean that cancer, or its aftermath, is done with you. The reason we speak of remission, rather than cure, is that, for many cancers, there’s no guarantee you’re cured until you die of something else. And even if you are cured, remnants of the experience – like ongoing neuropathy or fatigue – might remain. New problems might also arise many years later in a maddening, slow-motion chain reaction.

That’s where I find myself now, addressing the next link in the chain. The first links were the tightness in the chest muscles from surgery and radiation, the random pains that still shoot through the scars, and the numbness under my left arm. Then came the transient bouts of lymphedema in the arm where numerous lymph nodes were removed. And now, a diagnosis of osteoporosis, which will likely lead to the ingestion of more chemicals, this time to bolster the bones.

To be honest , I can’t blame it all on the cancer and treatment as I have several of the risk factors for bone thinning – Caucasian background, family history, and low body weight. But I’ve also been careful to follow the guidelines about weight-bearing exercise, calcium and vitamin D intake, and a healthful diet. So how is it that, instead of maintaining or increasing bone since my first bone-density test 5 years ago, I’ve seen a decrease?

There’s only one answer to that question – chemotherapy.

As it turns out, there’s a bit of research showing a connection between chemotherapy and osteoporosis. But except for my naturopath’s oblique mention of a potential “degenerative process,” I heard nothing about what chemo can do to bones.

Knowing about that connection wouldn’t have changed my mind about treatment. And I know other cancer survivors who are dealing with much more than I am, for a much longer time. We would all choose our same treatments again because that’s what saved our lives. Like any other major life decision, you never really know what it is you are choosing. There’s never a guarantee of how things will turn out.

But every time a new problem comes to light, one that can be directly related to the cancer or the treatment, we cancer patients stumble and sag, carried back to the days we hoped we’d gotten beyond, when the darkness was constantly visible, not a shadow in a far-off corner.

Take that money (and those genes) to the bank

penny2A couple weeks ago, I called my health insurance company because I finally got the EOB (explanation of benefits) for the genetic test I had back in December. The total amount billed to insurance by the medical center was more than $5,000. Of that total, the insurance company paid a bit less than half.

Before I had the test done, the genetic counselor told me that the company doing the test — Ambry Genetics, one of the companies I could choose from depending on which version of the test I selected — would call me to authorize any out-of-my-pocket cost above $100. As I never got a call from Ambry, I assumed that $100 was the most I would have to pay. Not a bad price if it bought some peace of mind.

(Note: Your mileage may vary. Insurance companies do not always cover genetic testing; they usually require a definite indication of a genetic risk because of personal or family health history.)

But here’s the truth of it. My out-of-pocket cost was – nothing.

Nothing.

Not even one bright, shiny, Lincoln penny.

According to the insurance company, by law, the testing company cannot bill me. So even the $100 I was expecting to pay remains in the bank. And that’s good news.

The other good banking news appears in this paragraph on the report of my test results:

“If you have a personal history of cancer, you may wish to pursue DNA banking. DNA banking involves providing a DNA sample to a facility who will store it for a set period of time. Since it is always more informative to perform genetic testing on someone who has been diagnosed with cancer, DNA banking helps ensure that your DNA sample would be available to your family members, should additional genetic testing options become available in the future.”

This was the first I’d heard of DNA banking.  But as this chart shows, the list of gene mutations – and the related cancer syndromes – that can be tested for is lengthy and ever-changing (note the recent additions in red). As the field of genetics grows, allowing us to track our individual health inheritance, so grows the need to compile and update the genetic formulas that affect us.

The various cancer-related DNA banks scattered in research facilities around the country DNAhave been collecting data on cancer genetics for a while. As is too often true with technology, however, there’s a compatibility issue that impedes researchers who want to collect, access, and compare information in their study of cancer.

But now, the National Cancer Institute has launched a project they call the Genomic Data Commons. Researchers in this project are collecting, standardizing, and streamlining access to these data sets from cancer patients across the country. The project is part of President Obama’s National Cancer Moonshot, spearheaded by Vice President Joe Biden, whose son died of cancer. So far, the data collected equals 4.1 petabytes (petabytes!) of information (1 petabyte = 1 million gigabytes).

Whether it’s about the money or genes in the bank, the situation for those of us affected by cancer grows a little brighter.

And the Answer Is In

The phone rang promptly at 8 a.m. this morning and, still clad in my pajamas and robe, I noted the caller ID on the screen and knew the answer I’d been waiting for was on the other end of the line.

I let the phone ring a third time so I could acknowledge the moment I was in.  The next moment, when I picked up the phone, would change my future one way or the other.

Mercifully, the answer I got from the genetic counselor was the one I’d been hoping for.

Of the 17 genes tested from my blood sample, none showed a mutation related to breast cancer.  Not BRCA 1 or 2, not PALB2, not BRIP1, nor any of the remaining genes, too many to be named here, that increase the risk.

If you saw me today, you might have said that I stood a little straighter, breathed a little deeper, and felt a little lighter.  You often don’t realize how heavy a burden is until you can put it down.

 

Waiting for a Phone Call

 

phoneNext Thursday morning, at precisely 8 a.m., I will find out the next step in my ongoing journey in Cancerland, a place you can never really leave once you arrive. That is the time I have set aside for a phone call from the genetic counselor I met with before Christmas. This will be the third conversation I’ve had with the counselor, but this is the critical one because it determines what I do next: fall back into the web of anxiety and ongoing medical procedures, or take one very deep, free breath.

My first conversation with the genetic counselor was about 5 years ago, after I completed treatment for breast cancer. My oncologist suggested that I consider getting a genetic test to determine whether the cancer I had was related to a mutation in either of the two most popular genes that cause it. (I say “most popular” because, as geneticists are discovering, there are other genes involved in breast cancer).

On the appointed day, I drove the 90 minutes up the freeway to the counselor’s office, where we reviewed every piece of family healthy history that I could recall –which relatives had died and which were still living, the cause of death of each deceased relative, and the health conditions in the relatives still alive. I did my best to remember every story, every shred of health information I’d picked up over the years of being part of this family.

Yes, there is my grandmother who had an undefined breast cancer around 1970 that eventually recurred and took her life about 12 years later. And yes, there are various other relatives who had cancer of various types:  colon, bone, and skin. But no other instances of breast cancer and none of ovarian cancer, the two telltale markers of a genetic propensity for people like me.

This recording of my extended family’s health history took quite a bit of time that day. One advantage of having a large (nominally Catholic) family is that you’ve got lots of opportunities to spot any patterns of illness, cancer or otherwise. Among my 4 siblings, 9 aunts and uncles, and 35 cousins, my family health map was pretty clear of signs of a genetic problem.  The counselor thought it was not likely I had the bad genes. And so, I decided then not to have the test.

The next conversation with the counselor was about 3 years ago, when I learned a close relative had also been diagnosed with breast cancer. I called to determine whether that occurrence increased the likelihood of my having the genetic flaw.  But the other relative had a different type of breast cancer, at a different stage of life, and had been on hormone replacement therapy. The counselor’s answer was, once again, “not likely.”

So, you may be wondering, why the third conversation? Why ask again when the odds seem ever in my favor?

Here’s why:

The research on breast cancer is constantly evolving, and there is more and more evidence that the type of cancer I had – triple negative – is driven by genetics more often than the “garden variety” hormone-related breast cancers. Oversimplified media reports imply that most breast cancers are related to gene flaws, which is simply not true.  Only 5% to 10% of hormone-positive breast cancers relate to genetic deficiencies, but the burgeoning research on triple negative cancer shows that as many as 15% of these cases relate to genetics. Though that number is far from a majority, the possibility is great enough to make testing reasonable.

The other factor is that Myriad Genetics, the company that initially developed the genetic test for BRCA1 and BRCA2, was forced to give up its patent on these genes in 2013. This ruling by the U.S. Supreme Court meant that other companies were free to develop genetic tests for breast cancer (and Myriad could no longer get away with charging several thousand dollars for the test).

So, when my oncologist once again suggested the genetic test at my checkup back in November, I decided I’d bite the proverbial bullet and get it done, if for no other reason than to find out whether my children would have anything to worry about.

The test itself is simple – they draw blood and send it off for analysis. The results, however, may not be so simple.

First, there’s a choice of which test to take:

  1. the one that checks for only BRCA 1 and 2
  2. the one that also looks for other genes implicated in breast/ovarian cancer (PALB2, BRIP 1, and another whose name I can’t recall)
  3. or the one that finds every genetic anomaly you have (as far as they can be currently identified)

In other words, the choice is this – how much anxiety do you want to introduce into your days?

In my situation, it no longer seems enough to look for just BRCA1 and 2. But I also don’t need to worry about a bunch of genes that might not be functioning properly but aren’t causing trouble and about which I can do nothing. So I chose the second option.

Ten more days to wait for a phone call.

Ordinary Moments

About 6 years ago, I noticed changes in my breast that eventually led to a diagnosis of triple-negative breast cancer. Six years later, I am ever grateful for the simple fact that I am alive.

But over these past 6 years, I’ve been plagued by the idea that – having survived a potentially deadly disease — I should be doing greater things with my life. This idea, I suspect, is one of the unmentioned after-effects of cancer, promoted by all the smiling faces on survivorship posters, the Facebook people who post their travel photos, the TV ads that show active people feasting on the very air. Look at all those survivors  – starting foundations, running marathons, changing the way the world spins.

And here am I, doing the dishes, going to the grocery, taking the car in for repairs. These are the activities that occupy what seems to be an excessive percentage of my days. I don’t know how to start a foundation. What’s more, I don’t have the drive or energy to find out. I gave up running long ago, a casualty of laziness and sensitive joints. Sometimes, it’s all I can do just to put three somewhat healthy meals in my mouth in the course of a day.

Make no mistake: I have great faith and belief in the everyday work I do – teaching, writing, looking after my family – simply because I believe these activities are important, if only to me. (No one has ever accused me of lacking ego!) But always there is the nag in the back of my head who says: “Why aren’t you doing more with your life?”

It’s a never-ending trap, this idea that we should always be doing something more – that who we are and what we do is somehow never enough. The size of this trap expands exponentially once you’ve been seriously ill, the product of the idea that contemplating death imbues a life with greater meaning and therefore greater action. This trap can be as psychologically damaging as the illness itself because of the guilt attached: “I’ve survived, so surely I’m supposed to solve world hunger?”

And that’s why I’m glad to see a change in focus in the ads now broadcast by a nearby cancer treatment center. Finally, here’s an ad that dismantles the trap, that reflects the reality of most of us who survive treatment. We mow the lawn, we make toast, we sort the laundry. I don’t like the implication in this ad that cancer is now an everyday occurrence – a speed bump on the way to the grocery —  and I chafe at ads that pit a center’s survival rates in a marketing competition against others. But I am glad to see the expectations made realistic. Life after cancer is pretty much as it is beforehand — full of ordinary moments.

Five years on: What does survival mean?

December 31, 2014, was not just the last day of last year. For me, it was a significant point in my cancer journey – that landmark day that marks 5 years since the end of chemotherapy, the point at which my oncologist started the survivorship clock.

Those 5 years have brought me from a place of terror to one, I hope, of realistic adjustment to the idea that I won’t live forever and that, regardless of appearances, the only real control I have over my life is within my small realm of influence – what I choose to do or not do. I still think about having had cancer every day, sometimes throughout the day, but these thoughts echo from the back of my mind; they rarely take a position in the front.

I still occasionally wonder what I did to bring on the disease, though a recent study suggests what I’ve ultimately come to believe — that in many cases, cancer develops simply as a matter of “bad luck.” Still, although I’ve changed habits that might have led to my developing cancer, I can be prone to that same panic I felt at my initial diagnosis when some new pain shows up.

Why do the cancer gurus set the critical point to determine survival at 5 years and not some other time? After all, I know a few people who were given a clean bill of health at the 5-year mark, but later were taken from us by a recurrence of the very cancer they thought had been conquered.

Here’s what the Mayo Clinic has to say about those 5-year survival statistics, which clarifies the factors influencing survival about as much as they can be. If you want even more details, especially about those long tails in the survival curves, take a look here. And as noted in this chain of posts, lots of factors influence the choice of a 5-year time point for analyzing survival.

Whatever the reason, it’s a date to acknowledge. In my own case of triple negative breast cancer, the more critical time point seems to be 2 to 3 years after diagnosis when (statistically speaking) the cancer is more likely to recur. Although I passed that mark a while ago, the 5-year point is equally important. Besides being the cut-off for the data, this is the point when oncologists tend to turn the care of cancer patients back to their primary care doctor. So the 5-year time point also marks the end of a long-term relationship with the doctor who served as a guide and security blanket during a harrowing time of life.

Besides the legion of thoughts about survival, my diagnosis of cancer left me with the feeling that I should be doing greater things with my life — establishing a non-profit foundation, for instance, or helping to solve world hunger. But here I am, going about my days much as I did before – getting the kids to and from school, teaching writing classes, walking the dog (sometimes).

Outwardly, my life looks very much like it did before my diagnosis, and even my hair has returned to its normal state (albeit with a few more gray hairs). Inwardly, the course of my thoughts is very different. I worry more about possible health risks for my family, yes, but I am also better at recognizing the value of my work, my relationships, and even the boring minutes of the day.

In his book Man’s Search for Meaning, Viktor Frankl notes that “What matters, therefore, is not the meaning of life in general but rather the specific meaning of a person’s life at a given moment . . . Man does not simply exist but always decides what his existence will be, what he will become in the next moment.” In other words, I can decide that, at this moment, what I’m doing has meaning simply because I have decided that it is meaningful. I may not be in a position to solve world hunger, but I can do what I can where I am.