Metastatic Breast Cancer–the Ugly Stepsister

Before I was diagnosed with metastatic breast cancer (MBC), I confess that I didn’t know much about it. I assumed, as many probably do, that Stage IV breast cancer occurred primarily among people who hadn’t caught the disease early.   There was the very public example of Elizabeth Edwards, whose initial tumor was a whopping 9 centimeters, and who then faced a metastatic recurrence—and eventual death—a few years later.   And, like many, I suppose I had drunk a bit of the pink Koolade that “early detection” is key—that lives are saved when women get mammograms, their tumors are small and haven’t spread, etc. Since I fell into this category, I certainly thought—and hoped—that I was among them.

The facts are quite different. The incidence of de novo Stage IV, or metastatic, breast cancer is very small, less than 10%. The remainder of cases come from women like myself, many of whom got regular mammograms, were diagnosed with early stage disease and then had a recurrence. (It should be noted that there is NO effective screening tool for women under 40—mammograms have limited utility in younger women who have denser breast tissue than their older counterparts). Up to 30% of women with early stage disease, in fact, will go on to develop metastatic cancer, sometimes many years later—and this includes women who had Stage 1 or even Stage 0.    Because so little money goes into research for a cure (only 7% of research dollars in the U.S. and U.K. go to metastatic disease, the only kind that kills) scientists simply do not understand yet why—despite treatment– the cancer lays dormant, sometimes for a decade or more, and then recurs elsewhere in the body. The bottom line, scary as it is for women who have had early stage disease, is that at this time, you simply cannot know if you are part of the 70% majority or the 30% minority.

Statistically, we don’t even know how many women and men are living with metastatic breast cancer, because data is only tracked on the original diagnosis. Estimates put the number in the United States at about 150,000, but when a metastatic breast cancer patient dies, their original diagnosis—in my case Stage IIA—follows them.

Because of all the hype about mammograms and early detection, the focus especially in the United States—and more importantly, the funding– over the last thirty or more years has been on awareness and on ensuring that women get screened. This is not to say that mammograms and self exams do not have their place—they do. But to imply that they have improved survival is simply false. The same number of women (and a few men) are still dying of this disease as they did 40 years ago—40,000 per year, or 108 every single day.

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Partly for this reason, you will not find many fans of the Komen Foundation, the ultimate pink juggernaut, among those who have metastatic disease. Despite the fact that Susan Komen herself died of metastatic breast cancer, the cruel myth has been perpetrated by the Komen Foundation that survival rests in the hands of the patient, through early detection. According to one Komen ad, “What’s the key to surviving breast cancer? It’s you.”—the clear implication being that if you get metastatic disease, it’s your own fault.    As noted above, fewer than 10% of women are initially diagnosed with Stage IV (which has a 23% five year survival rate), the rest—assuming they are of an age when a mammogram is even a useful tool—may still face a recurrence even if they have been diligent about screening.  Komen has generally minimized any publicity of Stage IV or metastatic disease patients during Breast Cancer Awareness month, instead choosing to focus on the “feel good” message of early detection and cure, replete with dogs dressed in pink bras.

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A recent report on the global status of MBC (Advanced) concludes that research on metastatic breast cancer has not kept pace with advances in other forms of cancer, such as melanoma and lung cancer.   The report recommends a much more aggressive approach to investigating the genomic underpinnings and improvement of outcomes in metastatic disease.  Organizations such as Metavivor and the Breast Cancer Research Foundation spend the bulk of their donations on research into metastatic disease, and are, in my opinion, a much better investment than Komen and their pink dogs with bras.  If this is a cause that speaks to you, I encourage you to check them out.

Across this Land

2016-06-21 18.49.55I have relatively few items on my bucket list, but traveling by train across the United States was one of them. When I was 5 or 6, my grandparents took the California Zephyr from Chicago’s Union Station to San Francisco. I remember being fascinated by the letters and postcards they sent along the way, as well as the exotic gifts they brought me from California– including a pair of blue Chinese-style silk pajamas which might have been my first exposure to anything Asian.  My dad also loved train travel and his highest compliment for a cup of coffee in a restaurant was that it tasted like “dining car coffee,” a reference to the exquisite meals that used to be served aboard trains in the United States.

2016-06-22 06.49.32Although I had taken the Empire Builder from Chicago to Seattle once a long time ago, I had never traveled the entire length of the U.S. from New York to California.   So, this past week, Marty and I boarded the Cardinal, which runs from New York to Chicago via the Smoky Mountains, and then the Zephyr from Chicago.   Altogether, the trip took three nights and four days.

2016-06-21 12.47.27The scenery along both routes is both beautiful and informative—the majesty of the Smoky and Rocky mountains, the grandeur of the Colorado River, the eerie Ruby Canyon which is reminiscent of the Grand Canyon, and miles and miles of industrial corn fields and ethanol production facilities on the heartland stretch, as well as orchards and occasional wind farms when you reach California.  The train riders included a wide variety of people, from families to international travelers, who, like us, wanted to experience the full length of the United States from the ground.

2016-06-21 09.38.52The conditions of travel, however, are not those of former days. This was no surprise to me as I have often traveled by train since moving to the east coast, and am familiar with both the equipment breakdowns and delays associated with Amtrak (both of which occurred on this trip, as well).  Overnight travel poses additional challenges as the sleeper car rooms –even the largest ones–are about the third the size of a cruise ship cabin, and don’t allow for much maneuvering, and parts of the track, especially on the Cardinal, are quite rough (the Zephyr route is much smoother, especially through the western states) leading to disturbed sleep.  In addition, because of the extreme heat in the west, there were stretches where the train could only go 15 miles per hour due to the expansion of the tracks and safety concerns. The food is not bad, although certainly far from the service and ambience provided in my parents’ and grandparents’ era.   For part of the trip, likely because of the medication I’m on, I was also not feeling that well, which didn’t help. Despite the beautiful scenery, the hot shower and comfortable bed that awaited us in San Francisco were most welcome.

 

 

 

Omega Institute

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I am at Omega Institute this week. I wrote about this previously, a couple of years ago. It’s a place I come to at least once a year, to relax, renew my spirit, and feel the calm and peace of these wooded surroundings in upstate New York. As I wrote then, a former Jewish arts camp that fell on hard times and closed in the mid 1970s, Omega was purchased in the early 1980s  by Elizabeth Lesser and Stephen Rechtschaffen, both writers and teachers in the fields of emotional intelligence, healing, and sustainability.  It offers weekend and weeklong courses in a wide range of fields–writing, creativity, yoga, healing, meditation, sustainability, veteran’s issues, and leadership, to name just a few.  Over the course of the twenty years I’ve been coming here, I’ve sampled quite a few of these.

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I have always just come for a weekend, never having the luxury of time to do one of the five day sessions until now. I am finding the longer period even more restful and renewing than the weekend sessions.  Although I am no longer to do some of the things I have done in the past–such as the four mile run around the lake that abuts the campus– I have made some nice connections with other participants, and finding some wonderful support here as I have disclosed my situation to others.

Although in the past the population has seemed heavier on the female side, I am noticing more men this time. I have had some very interesting conversations with a few of them, some of whom are business people or ex-military (one is on the board of a Fortune 500 company).  It occurs to me that when we work with people in a business setting, we often have no idea of the multi-faceted dimensions of their lives, and such conversations are not really encouraged, either–one gentleman who is  working in a management capacity noted that he really could not disclose widely that he was spending the week at Omega in a meditation class.   It is as if we bring only part of ourselves to work, and have to park the rest outside the door.

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Tomorrow, I’ll have an hour long session of Reiki—a Japanese relaxation and healing technique that is now offered, usually in shorter sessions, in many hospitals and oncology centers, along with nursing homes and hospice settings.  When I was at Dartmouth, a talented practitioner in the chemo infusion area was able to relax Marty’s  aching shoulder in just a few minutes,  without physically touching him.   Who knows how any of this stuff works? I have stopped asking such questions and approach these modalities—many of which have Asian origin—with an open mind.    As I have quoted before, in the words of Shakespeare, “There is more in heaven and earth, Horatio, than is dreamt of in your philosophy.”  I seem to get almost daily reinforcement of that when visiting a place like Omega.

 

Old Friends–and New

Over the past several weeks, especially since I began writing this blog, I have had several contacts from old friends—in some cases, people I haven’t seen in years. This has been an incredible joy and a great comfort.   I’m aware that sometimes people experience isolation in circumstances like mine—it is not easy to be present with someone who has a terminal illness. It can be scary, and sometimes people—even people you have been close to– just don’t know what to say or how to be, so they avoid the situation entirely.

That hasn’t happened, and I couldn’t be more appreciative.   Besides immediate family, several have visited, or met me in a mutually convenient location. This has included friends from all stages of my life: my college roommate who lives a couple of hours away, the husband of a friend from graduate school who is also a good friend, a friend I knew from Japan who drove down from Canada, and most recently, friends from Michigan and a high school classmate I have known since kindergarten. My cousin also flew up from Tuscaloosa—a real schlep– for a long weekend. Visits and halfway get togethers with others are in the planning stages.   And several others have posted comments and memories on my blog or on Facebook, or sent me emails.

This is not to give short shrift to more recent friends, especially those I’ve made since moving to New Hampshire. My Sunday running group has stayed in touch, even taking me out to lunch, and local friends have checked in, walked with me, given me rides to medical appointments, and otherwise been very supportive. I’m very grateful for all of this.

Perhaps the most interesting part of reconnecting with people you have known a long time, especially those from  youth or early adulthood, is our memories. Many are shared, of course, but the ones that are most fascinating are the ones each of us have that the other either doesn’t remember at all, or recalls only after being reminded. A case in point is my recent reunion with my high school classmate. We had the same teachers in elementary school, and each of us had memories from the second grade. Mine was that, to settle us down after a fit of giggling, we were sent to the principal’s office. She had no memory of this. Hers was that I encouraged and egged her on,  to get the requisite number of stars for memorizing our times tables, after I had done so myself.   “You were so compassionate,” she said—what a tribute to a second grader!  I don’t recall this at all, though I greatly appreciated the compliment–I am not sure I could think of myself as aspiring to be compassionate, or even valuing this quality, until many years later, after much life experience.

The other thing is how you can pick up with someone, after not seeing them and leading separate lives, even after many years. Whatever connection we forged when we saw each other much more frequently, including our memories (whether shared or those we remind the other of)  somehow remains intact.   Social media has helped a lot in renewing many of these connections, but I’m also grateful for the opportunities to see people in person.

It is a truism, certainly one that teachers often experience with their students, that we can never really know or appreciate the impact we have on others.  These contacts, both old and new, are helping me reflect on the whole arc of my life—from childhood, to family connections, to adulthood, to the more recent past since I came to New Hampshire.  It’s a real blessing, and I thank you all.

 

 

 

 

 

Being and Not Being

sky-moonlight-nature-night-stars-clouds-rain-landscape-moonAs I have grown older and dealt with the death of close family members as well as some friends, it has struck me how differently people deal with the prospect of death—even though it’s something that comes to all of us.    There are those who die suddenly and/or tragically before their time, but among people who have a longer off ramp to the process, some “rage against the dying of the light,” some go in fear and even denial, and others let the tide go out gently. Some are willing to talk about it (clearly I’m in that category) and others are not.

Even though my family examples are mainly of those who lived long and full lives, their stories vary. My maternal grandmother, who once opined that “when people die, they just die,” did exactly that. After a short period of failing health when she was in her 90s, she was admitted to the hospital on a Thursday, and died that Sunday.    She also seemed unafraid to confront the prospect of death.  My mother and her sisters were in horror at one Sunday gathering when, as my arthritic paternal grandfather sat down with difficulty beside her, my grandmother asked him bluntly, “Now, Mr. Hennigar, how old are you going to be on your next birthday– if you live until then?”

My mother, on the other hand, lingered in a nursing home for nearly two years, wasting away.  In the years leading up to her death, I could tell that she was terrified—she did not want to speak of even the prospect of dying. My father, also in a nursing home in his last year of life, was much more accepting. About six weeks before his death, he took my hand in his and said simply, “Darling, I’m dying. I just can’t put anything in my body, any more.”    The day before he died, the distinct smell of macaroni and cheese—my favorite dish as a child—wafted through his room, even though it was mid -afternoon and nothing like it had been on the lunch menu that day. I took this as a sign that my mother had arrived and wanted me to feel her presence, as well. My dad went calmly and peacefully the following morning.

But perhaps the person from whom I learned the most was my paternal grandfather, who died when I was 29.  I had a very close relationship with him, and although two of my other grandparents had died when I was younger, I was at an age when my world construct had evolved to be open to the more spiritual aspects of life.

In his mid-80s, my grandfather developed a heart blockage, and we took him to the University of Michigan hospital for one of the very first pacemakers to be installed in a patient–-his surgery was even filmed by the U-M medical school.   In those days, pacemakers were clunky objects that protruded from the chest, and had to be replaced every few years. My grandfather lived to have two such replacements before dying from natural causes at 95.   The first replacement went well, but during surgery for the second, something went wrong, and my grandfather’s heart stopped during the procedure.

When he got out of the hospital, he seemed both excited and sobered.   It turned out that during the time his heart stopped, he had had an out of body or near death experience.   These were not well publicized at the time, as they are now. He wanted to talk about it. My parents seemed oddly dismissive, but I was fascinated. He described the things that many people who have had these experiences relate—a warm white light, a loving presence, the sense of other beings who had passed before him, an overwhelming peace. “I have lost any fear I had of death,” he pronounced. “If that is the place I am going, it is a wonderful place to be.”

A few years later, just weeks before he died, I visited him in the nursing home—I was home from Tokyo, Japan, where I was then living.   He was not able to speak much, but he kept talking about needing “to get around the corner.” Over the next few weeks, I had a series of dreams in which my grandfather was wandering in a black and white forest, just out of reach of a lush green area of trees and fields.   I could see the whole vista in the dream, but realized that he could not.   His physical condition continued to deteriorate and he lapsed into a coma.  On a mid-August Saturday morning in Tokyo, I woke with a violent start and sat up in bed. A few minutes later, the phone rang—my father was calling with the news that my grandfather had just died, almost at the exact moment that I awoke so suddenly.

In the weeks that followed, I had a few more dreams—in one, my grandfather’s eye was a vivid blue orb that pulsed a beautiful light.    At some point, the dreams stopped, and my own process of mourning my grandfather’s death moved along, as well. I have not thought of this time in many years, nor have I felt my grandfather’s presence as I did then, yet I realize that these memories form a kind of backbone in my construct of death.   Of course, from this side of the divide, there is nothing we can know for certain. But the famous words of Hamlet come to mind: “there are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.”