Posts Tagged ‘healthy people’
01.18.2011
Even if you respond well to treatment, survivorship involves making space for the reality of cancer in your life. There may be stretches of time where you do not feel defined or limited by cancer, but it hangs over your head, like the legendary sword of Damocles.
Damocles was a courtier who voiced his envy of King Dionysus’ power and position. The king traded places with him so that Damocles could experience royal luxury, but he also hung a large sword over Damocles’ head, suspended by a single horsehair.
The original tale is meant to illustrate the burdens of leadership. Even though I carry a different burden, the image of the sword keeps coming to mind as I try to articulate the survivor experience.
For us, that sword is simply mortality. I have never been in denial of my mortality. When I have had hard decisions to make or am struggling with balance, I have often asked myself, “If I were to die tomorrow, what choice would I want to have made?” My days have always been numbered in my mind. The finality of life brings clarity.
The difference is between a theoretical experience of mortality and having sat in an exam room with doctors looking at the results of a battery of tests and seeing the serious expressions on their faces. It’s hearing them say that, if you don’t respond to treatment, your chances aren’t good. It’s having to entertain, from moment to moment for months on end, what it might mean if this really is it.
In other words, that sword hangs over all of our heads. The difference is that cancer survivors’ sights have been pointed upward. We have taken in the sharpness of the blade, the fragility of the thread.
Given the progress of science, many of us may have unknowingly escaped the snap of that hair. Maybe we were exposed to the polio virus but, because of vaccination, we are fine. Maybe a water filtration system kept a deadly bacteria out of our body. These lifesaving moments go unnoticed. They do not mark us in the same way the rigors of cancer treatment do. Nobody calls themselves a polio survivor just because they got a shot.
I am learning to live with this dread. And it’s not just because I walked so closely with death this past year. It’s because I know that 30% of women who successfully complete treatment for breast cancer will relapse and develop metastatic disease. I know that mortality rates have not improved much over the past 20 years. An optimist might look at those odds and say that there is a greater chance that you will not get metastatic disease. Most of the time I think that way.
For those of you who have not had cancer, it might even seem like unwarranted anxiety. But consider that approximately 40% of adults have some fear of flying. The odds of actually dying in a plane crash, by contrast, are 1 in 20,000, or 0.005%. Cancer survivors seem pretty rational in comparison.
The dread is there and rears its head sometimes. Yesterday, an article in the New York Times detailed the experiences of women with metastatic breast cancer. It was very sobering and shook me up. I tweeted about it and found that many other survivors –– some of whom have metastatic disease –– were also moved by it. We had a spontaneous twitter support group.
I cannot overstate the value of having a community of people who understand life under the dangling sword. Yet it’s hard to find companions on this journey. Typical support groups are not a match for me because I am unusually young to have this disease. Other women have different reasons for feeling alone.
As Anna explained:
Women with metastatic disease are sometimes shunned by other breast cancer patients because they represent our greatest fear. We treat them as if their condition is contagious.
Even without that rejection, the existential loneliness of survivorship is difficult all around. The people who love us most don’t always understand our angst.
I am learning from my friends, though. They help me see that the trick is not to live in denial. So I read the statistics that I quoted above. I know my odds. As Jody says,
Deb reassured us that life does not end the moment you learn you have “mets”. Yes, it is your worst fear realized, but you are still you. There is still love.
The conversation went deeper. It was as emotional and intimate as Twitter can get.
We were moved by the experience and still tweeting about it this morning:
Of course, since this was Twitter, some weird robots chimed in too:
I love my twitter friends. They give me strength, courage, and company. But the robot got this one wrong. I will do as Jody suggests and look cancer in the eye. I will come to terms with that dangling sword.
But I will never, ever love the mets.
Tags: anxiety, attitude, changes, coping, courage, daily life, diagnosis, grief, healthy people, hope, identity loss, mental health, social media, support, survivorship
Posted in Survivorship | 15 Comments »
10.29.2010
I am a social scientist. I make my living entertaining questions about what it means to be human.
I have entered CancerLand with the same kind of curiosity I bring to any new world I encounter. Along the way, I’ve distracted my treatment-addled brain by pondering some of the essential questions about who we are.
Like, are people inherently good?
With the unbelievable outpouring of love and support I got from friends, family, acquaintances, and even strangers, I am tempted to say yes.
I know my inclination is based on a few things. My treatment is coming to a close and the memory of the worst parts of it are already starting to recede. I also realize that I am a glass-is-half-full kind of gal. The slights fade for me, and the love rises to the top.
I also know that the full story is much more complex. My adversity invites sympathetic bystanders. My illness is a “blameless” one, invoking greater compassion. I am not a person who has neglected my health and is reaping what I sowed.*
In the internet age, folks share. A lot. But I am not, for example, extricating myself from a domestic violence situation or grieving the suicide of a loved one, both of which would be filled with much more psychological complexity. The unambiguous injustice of what I am facing gives me license to be more open and rally people to my side.
So are people inherently good?
A study reported in Scientific American got me thinking about this question again, reconsidering my optimist’s conclusion. Biologically, we are designed to feel repulsion when we see a sick person. The mere sight triggers an immunological response. It makes sense. We need to preserve our own health and well being.
The findings resonate with the accidental fieldwork I’ve done in the body of a cancer patient: the guarded stares I catch out of my peripheral vision, the quickly masked looks of horror on the faces of people who have known and loved me as they see my unhealthy pallor, others’ constant preoccupation with how I look throughout my treatment.
In my culture, we are urged to visit the sick. It’s called bikur cholim. We are taught that “one who visits the sick takes away 1/60th of his pain.” There are even outlines about how to behave — what is appropriate to talk about and the caution not to stay too long.
Some of the things that make us good people come easily. Others do not. And personal history makes some good deeds easier to do than others.
This suggests that our nature isn’t perfect and that, for a variety of reasons, we often need a nudge toward doing the right thing. Clearly, there are solid survival-related reasons for avoiding sick people. But I suppose what separates us from other animals is that we can rise above instinct toward a better self.
In some ways, it’s okay with me to come to terms with the fact that we are not inherently good. We don’t always instinctively do the right thing. All of us can think back to times where we could have acted more nobly or righteously.
Accepting that as true only makes it more miraculous to have had so many people choose to overcome their fears and be there for me when I needed them.
* I don’t really get into the meritocracy of illness — that is, it becomes irrelevant whether or not somebody’s illness was an expected outcome of earlier behavior or genetics. I’m just saying that these attitudes exist and that it shapes how people respond to you.
Tags: changes, coping, daily life, gratitude, healthy people, hope, spirituality, support
Posted in Treatment | 11 Comments »
08.25.2010
We’ve launched another school year around here, and thank goodness, all my kids seem happy.
I too am back at work: writing syllabi, attending meetings, working on my research. I too am happy.
Even though we are only a couple of weeks in, I have already learned the hard way that I am still going to take awhile to get myself up to speed in any way that feels recognizable or familiar.
The biggest difference is that my old fallback, Plan B, is no longer possible.
Working parents probably know what I’m talking about. There is very little room for error when you have your schedule, your partner’s schedule, the kids’ schedules. There are few degrees of freedom. It’s the unexpected things that require a regrouping of Plan A –– a kid gets sick, a car needs repair. Truth be told, even the expected stuff can perturb the delicate balance of Plan A –– early dismissals, dentist appointments.
Up until now, my Plan B has been to take advantage of my flexible schedule. In my job, the work just needs to get done. For most things, it doesn’t matter when or where it happens. I can read, write, grade, review, plan, email at almost any time or place. So my usual way of absorbing these upsets –– my Plan B –– has been to work at odd hours in the evening, often after the kids are in bed.
That time is no longer mine for the taking.
I am lucky if I have much cognitive functioning past 3 PM, let alone 9 PM. This past week, most of my “good work” has to be done by lunch time. After that, I’m able to answer simple emails, file my papers, or straighten my bookshelf, but the heavy thinking time is over.
I am coming up with other ways to insulate my work time. It’s not what I expected, but I think I might pull it off.
My new Plan B?
I’m asking for a little latitude.
The hard part is that I have always prided myself on my punctuality, on making meetings and meeting deadlines. If I say I will do something, I come through. I am having to let that go a bit. Sometimes, I ask forgiveness upfront so that I do not feel the distress of letting somebody down. I’m adding “ish” to any promised deadline. I have to say no to things that are outside of the essential parts of my job, even if I feel a pull toward them for reasons of citizenship or duty.
Because my hair has come back and the worst of my treatment is over, I find that I have to explain myself occasionally. I tell people to think of me as being on energy conserve mode. When I’m on, I work pretty well. But I might unexpectedly need to shut down and reboot. If they still look puzzled, I might truck out the notion that it takes you as many months to recover from treatment as you spent in it.
Eventually, people get it. That’s my new Plan B. I’ll let you know how it goes.
Tags: changes, coping, daily life, essay, fatigue, healthy people, identity loss, parenting, support, survivorship
Posted in Survivorship | 5 Comments »
08.17.2010
The landscape of my friendships has shifted during this past year. Don’t get me wrong. I feel unbelievably fortunate. On the whole, my friends have come through for me in every way imaginable. Some of my friendships have deepened, as people have come to know me differently, have reached out to me in new ways. At the same time, as is inevitable in a crisis, there have been a few surprises in the other direction as well.
I love all the cards my friends have sent me. I look at them when I feel sad.
Yesterday, the New York Times published an essay about how others respond to you when you are in crisis. We know quite a bit about how people respond to their own crises. Ideas like resilience, resourcefulness, support and social networks get tossed around when we hear about what helps people make it through. It turns out, however, that we know very little about how people respond when those near them are in distress.
I have thought a lot about this because my circumstances have put me in an extended state of neediness. Between losing my step-brother and my own diagnosis, I have become a person who undeniably relies on others. I also look at others whose crises have hit close to home, like my friend’s recent death. Many of the tears I shed at his memorial service came out of the horror of realizing how close my family and I were to sharing his family’s fate.
The first thing I noticed when I shared my news was that friends who, as children or young adults, had lost a parent to cancer took the longest to respond. They all did eventually, always apologizing for the delay. Perhaps it’s my social scientist self, but I was so struck by the consistency of this phenomenon, it was easy to forgive. There was something much greater than flakiness at play. The emotional depths of the notes I eventually received confirmed that these friends were not being nonchalant. In fact, compared to so many people, they knew too well how serious my situation was.
One of these friends has continued to struggle in connecting to me through my treatment. At first, I was disappointed. This same friend stood out for the opposite reason during my brother’s time with cancer. She was literally there for me from the beginning to the end, holding my hand, accepting my grief.
I was with her during the hellish week of his diagnosis. He had been hospitalized for unclear reasons, and each day brought new test results signaling increasingly dire news. I kept ending up on the short end of all the bargains I was making with the Universe. Please just let it be a tropical disease. No? Then please let it be a treatable cancer.
After a few days of falling through this hellmouth, I awoke out of a dream sobbing. My friend was there, ready to delay her morning plans, to listen to my fears and offer her support. Later that week, she literally picked me up off the floor and got me to eat when the gravity of his disease became an inescapable truth, and I felt the world collapsing around me. As his treatment went on, I knew I could call her any time of day or night. In the end, she traveled a long distance to be there for me, to hold my hand, watch my children, do whatever was needed, so I could cry at his memorial service.
In between his death and my diagnosis, she confided in me that her mother’s death from cancer suggested she could carry the BRCA gene, a marker that would put her at higher risk for ovarian and breast cancer. She had decided not to have testing, because a positive result would open a course of medical decision making she did not want to endure. Even though her risk for breast cancer would increase dramatically from 12% to 60%, it would still be a less than certain outcome.
This wonderful friend, in a certain way, has kept her distance from me during my treatment. It’s not that she has ignored me or tried to sweep me under the carpet. Not at all. She sent me a really cute hat during chemo. She bought one of my t-shirts. She has supported me in many, many ways. But something has shifted. A subtle distance settled between us.
I thought of how consistent the silence was from all friends who had lost a parent to cancer. I recalled our conversation about her own cancer fears. I recognize how many similarities we have in our lives. I put the pieces together for myself and figured out that my situation spooks her deeply.
A couple of months back, she called to apologize.
“I’ve been meaning to tell you something. I don’t know how to say this.” Her voice filled with emotion. “I’m sorry. It’s just so hard for me…”
“I know,” I said as gently as I could. “I get it. You don’t have to explain.”
And it’s true. I do get it. As much as the landscape of my life has shifted, I know she will be my friend on the other side of all of this.
Maybe there are certain parts of our journey that even our dearest friends can’t tolerate. The fear, of course, is that maybe our crisis will become too deep for any of our loved ones to endure with us.
Sometimes, other people’s suffering just cuts a little too close to our own worst fears. I think it’s human. And I think, sometimes, it’s forgivable.
Tags: awkwardness, changes, coping, daily life, essay, grief, healthy people, identity loss, mental health, parenting, support
Posted in Treatment, Wellness | 2 Comments »
07.08.2010
I plan more than one day at a time. When I plan in advance, I don’t have to add the caveat “assuming I’m feeling okay that day.”
People argue with me.
When I go out, I don’t get piteous looks from well-meaning strangers.
I can exercise for an hour without having to take a nausea break.
I only take 1 or 2 pills a day, not 30 or 40.
I have bad hair days.
My big cancer problem right now (besides my energy) is that I am having a hard time finding the right necklines to cover my radiation burn and flat(ter) chest.
Tags: daily life, healthy people, survivorship
Posted in Treatment | 4 Comments »
