Monthly Archives: May 2015

An Uncomfortable New Title

Posted in Early stage cancer and recovery by

Survivor. I have been reminded by a few folks that in just a week’s time, I will get to wear that moniker, when cancer treatments have ceased (with the exception of long-term drugs) and I can return to normal life. As normal as life is for anyone. It is a moniker I’m told I’ve earned and I should wear it with pride, knowing I’ve beaten the Cancer Beast.

But it is one I am uncomfortable with, and I’ll tell you why.

Generally speaking, cancer can be deadly. My experience with cancer, however, did not rise to life-threatening status. I was told from day one that my cancer was highly treatable and my prognosis excellent. I was told soon after that the genetic makeup of my tumor indicated a low likelihood of recurrence. Cancer wasn’t going to kill me this winter/spring—and maybe it won’t in the future. So, I don’t feel like I’ve done battle with a deadly foe.

The treatments I have gone through, although tedious and resulting in unpleasant side effects, have not entered the category of major adversity. Not to downplay the fatigue, soreness, and brain fog that have ensued, but I got pretty off easy. I never lost my appetite, lost my hair, couldn’t get out of bed, or cried in agony. I never faced a day where I thought, “I can’t endure this any more” but pushed on anyway. Again, not much of a fight on my end.

I know, cancer is cancer. It stinks no matter what the kind of cancer, what the type of treatment prescribed, and how long the course of treatment. It’s scary and disruptive and painful, emotionally and physically. And because it certainly can have dire consequences for some, I understand the need to give a major attaboy or attagirl to someone who’s lived through it and come out on the other side in relative good health.

But at the same time, why is cancer a sort of “king” of diseases? Why do we have a special, honored title for people who make it through cancer treatment but not for people who go through other diseases, whether acute or chronic?

What about other people with other diseases and conditions? Particularly those who don’t just have a season or a year of living with a disease, but year after year after year?

  • The man with muscular dystrophy who faces the loss of physical abilities little by little—yet greets each day with determination and grace and even manages to go on a mission trip with his family? What do we call him?
  • Or the woman who daily pricks her finger, adjusts her insulin pump, and tries not to worry about potential vision loss  or nerve damage from a lifetime of diabetes—yet takes every healthy step she can to live a full life with her husband and kids? What’s the special name for her?
  • The elderly parent who struggles with confusion and fear as he loses his faculties to Alzheimer’s Disease—yet still tries to interact with family members, friends, and nurses? What’s the badge of honor he wears?
  • Or the girl with severe asthma who relies on inhalers and nebulizers to keep breathing—yet still signs up for the softball team, determined to play just like the other kids. Does she get a special title?

And then there are those who don’t survive cancer. What of the mom who pursues every treatment and fights ’til cancer steals her very last breath? Or the man who decides to forgo punishing chemo treatments to live out his days without the associated side effects, knowing that it means far fewer days? What do we call those folks?

I’m not in any way advocating for removing the term “survivor” from the cancer vernacular. And I certainly don’t mean to discount the term, criticize it, or imply that others should ever hesitate to call themselves that, proudly wear the word on T-shirts, and celebrate that title every second if they want to.

All I’m saying is that I am struggling with the label as applied to me and my circumstances. It is one of the many words, concepts, and experiences I have wrestled with—and continue to wrestle with—on this cancer journey.

Bells

Posted in Community, General life reflections by
st-bernard-roman-catholic-church-mt-lebanon-pa

In our town, there are lots of old, stone churches with bells. The bells chime and peal every Sunday and at various other points throughout the week. And every time I hear them, I have to stop and listen.

Something about that sound, ringing out and carrying on the wind, tugs at my heart.

The bells I hear today also rang out in those very church steeples 50 or 100 or more years ago. In fact, the sound is the same as what’s been ringing out in nations around the globe for centuries. It connects me to generations past, to traditions that originated in ages gone by. To think of all the meetings and masses, weddings and funerals, baptisms, confirmations, and first communions!

The bells serve to call people together—at least they did, before we all wore watches or carried cell phones to give us the time. Folks around town would hear the bells, and stop their chores and other activities to join together in a common purpose—to worship, mark a friend’s passing, or maybe conduct town business. As the bells toll, I am reminded of the importance of community and grateful for the sense of belonging that comes with it.

And the bells make me more aware of the passing of time. Each hour marked by the bells’ peals becomes a moment in the past that cannot be reclaimed.

The bells stir in me a nostalgia about the past, while reminding me how fleeting life is, how precious each minute ought to be. I cannot help but give thought to how my life has been shaped over the past four decades, even as I wonder what will transpire before the next time that familiar sound floats on the breeze through my window.

Same Stuff, Different Day—or Is It?

Posted in Early stage cancer and recovery by
calendar

Going to radiation daily can start to feel like the movie Groundhog Day with Bill Murray. Each day is the same, like someone hit the rewind button and is playing the scene over and over. The same steps to check in, same therapists and doctor, same patients coming and going. Same The Price Is Right on the waiting room TV. Same hard table and drafty treatment room.

I know the sights and sounds I’ll encounter, the faces I’ll meet each day. It’s easy to press the auto-pilot button and go through the motions like a robot.

Some days I fall into that mode—I know what to expect, and by and large, that’s all I experience.

But on other days, I manage to be a bit more present and notice things around me, and the drudgery of this process is lessened a little. Today, the lady in the time slot before mine finished her last treatment. She walked out of the doctor’s office with a smile on her face. I smiled silently with her in celebration. An older woman came in to the changing area right after me—I suspect she was there for her first radiation appointment, because she wore the same look of “I’m trying to be cheerful, but I’m really freaked out” that I had on my first day. My heart whispered a little prayer for her. A toddler issued an unspoken challenge to a smiling contest in the elevator. The little girl won, hands down, and my spirit was lifted as I walked to my appointment.

The radiation treatment experience is not unique in its repetition. Much of life centers on doing the same thing again and again. Whether interacting in the workplace, raising children, tending a garden, or even leading worship on Sundays, we can get so used to the processes and people that we stop fully engaging. Even things we love doing can start to feel rote and mundane when we do them all the time.

Unexpected diversions that interrupt our routines may capture our attention, if they’re big enough. But do we go into each day, into each one of our daily places and rhythms, expecting to see something worthy of note? Do we anticipate extraordinary moments—however small—in the midst of the ordinary? And do we pause and appreciate those things when they occur?

If we rise each day with the feeling of same stuff, different day, it’s likely we’ll get just that. If we begin the day, however, with a desire to experience something new and special—and we maintain an attentiveness to the world around us—odds are that desire will be fulfilled.

Tired and Tiresome

Posted in Uncategorized by

For the past couple of weeks, I’ve been feeling pretty well. I’ve had my moments of feeling down or worn out and experienced some minor side effects, but by and large, I could honestly answer “I’m good” when asked how I was doing with treatments. This week, it’s like someone flipped a switch. The radiation has taken a toll—there’s an aching and burning almost all the time, sharp pains make me wince when I move certain ways, and my skin is an irritated mess. Each day seems worse than the previous. The physical toll is catching up to what has thus far been largely psychological.

I’m also feeling increasingly tired. But more than that, I fear I am becoming tiresome. This week, when asked how I’m doing, I have found myself responding with “I’m hanging in there” or “I’m OK [insert shrug].” I suppose I could fib, and maybe I should. Because that’s easier for the inquirer. When we ask someone how they’re doing, let’s be honest, we secretly want them to say, “I’m doing fine, thanks.” That lets us off the hook—we’ve shown that we care by asking, but then we can move on with our day. And even if we ask the question out of heart-felt caring and are prepared for an honest answer, don’t we, deep down, want to hear that our friends and loved ones are doing well?

Any other response leaves us in the position of either coming up with a quick word of encouragement before we go on our way, or asking follow-up questions and settling in to a longer conversation. If we choose the latter path, we then enter, at least temporarily, into the other person’s space of trial, pain, uncertainty, or grief. I don’t like being the person residing in that space and opening the door for others to enter. (Yet, it’s hard to remain behind that door alone.) I don’t like being “that” person—the one who, if you ask how I’m doing, might just tell you.

I also know that this time of treatment is a drag for my colleagues. Everyone is very gracious and helpful. They all say that I need to put my health first, the work will get done somehow, not to worry. And I know that they mean that, at least for the most part. But, I’ve been in their shoes—the one to pick up someone’s slack because they’re ill or facing some other personal issue that results in frequent time away. Although I’d never grumble in those situations, if I’m honest, in the darkest corners of my heart, there is a little nugget of frustration when I have to finish someone else’s task, or that person has to cancel a meeting for the third time because of a doctor’s appointment. I know that my being out of the office some of each day, and needing to take the occasional day or afternoon off makes me less reliable right now, and in some instances results in work being moved from my plate to a colleague’s. And that feels terrible.

Many have told me not to worry about any of this stuff. That right now I need to be selfish, to worry only about me and getting through radiation and onto healing. If I need to talk about it, talk. If I need to take time off, take it. But that’s hard to do. My whole life, I’ve been taught to consider others’ feelings, to even put others’ needs ahead of my own. And I was raised to “do a job you can be proud of.” Showing my woes or leaning on others because I feel bad or tired makes me feel like a burden.

I Hate Pink

Posted in Uncategorized by

I hate pink. Haven’t been much of a fan since I was a little girl. And I’m tired of seeing it everywhere now—in the form of pink ribbons, pink robes, quilts on the doctor’s office wall, lettering on support group fliers.

I know the pink ribbon is the “brand” for breast cancer awareness. And I get that pink was chosen because women are the ones most affected, and pink is the traditional color for girls/women (in the pink vs. blue context). I’ve even read that pink is the color of hope or compassion. But pink has other associations in my mind that just don’t make sense when related to breast cancer.

Pink, in most of its shades, is a demure color. There is nothing demure about going through breast cancer treatment. It stinks. It’s tough. And women have to muster all sorts of emotional and physical strength to do what needs to be done to kick cancer’s butt—whether that’s undergoing an uncomplicated lumpectomy and radiation only, or a double mastectomy + chemo + radiation.

Then there’s the phrase “tickled pink,” indicating one is extremely pleased or filled with joy. I don’t know a single woman who feels that way about having breast cancer. Nor any sane person who feels that way about breast cancer in general.

And what about the idiomatic “pink slip,” meaning you’ve lost your job? Unfortunately, that may well be a reality for some women going through breast cancer treatment. Many of us struggle to keep up with our jobs, many have to take a leave of absence, and some find themselves out of a job if their employer doesn’t offer disability benefits or a generous sick leave package. Even for women who don’t work for pay, they often have to back away from other responsibilities—duties of a mother or spouse, volunteer roles, and helping to run the home.

Pink is associated with femininity. And so are breasts. Faced with the loss of one or both breasts, or disfigurement of a breast resulting from partial mastectomy, women going through breast cancer treatment may not feel particularly feminine as they try to make peace with the changes to their body. A well-meaning guy friend said to me, “At least the cancer’s in a part of the body you can live without.” While I know what he meant—a breast, in contrast to, say, the brain or lungs—I am willing to bet there’s not a woman alive who thinks her breasts are optional equipment.

PINK is a Victoria’s Secret subsidiary aimed at selling sexy lingerie to young women and teens (many of whom, frankly, are likely too young to be thinking about sexy lingerie, but I digress). Like the issues with femininity, women fighting breast cancer often struggle with issues of sexuality. Having my breast poked at, cut into, and inspected over and over by countless people in purple nitrile gloves, I really just want to build a fence around my body at all times that don’t require me to bare all for a doctor or technician. And then there’s the issue of wondering how a spouse or partner will react to the post-surgical body. Whether one’s chest has undergone a full reconstruction, or it appears as though part of one breast was gnawed off by a small shark, there is some insecurity associated with revealing our  “new look”  and anticipating its effect on our desirability.

And finally, pink associates breast cancer with being a women’s disease, but women are not the only ones who get breast cancer. Men do, too. Admittedly, it’s in much smaller numbers, but it happens. Men are less likely than women to seek health care to begin with (wives know this and studies confirm it), and I’m guessing that if the health issue involves their breast, they’re even MORE likely to ignore it because, well, it’s a breast and they’re a guy. A man I know had a breast lump investigated, and he felt highly out of place in a waiting room saturated with pink and wearing the pink gown for his mammogram. By making breast cancer a “pink” disease, we sort of leave men out of the equation.

Surely my disdain for the color pink is directed more at the disease than at the color itself. One day I will be finished with treatments, I will have gone through various scans and rechecks, and be able to say I’m cancer-free—for a year, 2 years, 10 years. Hopefully, forever. Maybe then I’ll have a better appreciation of pink and some of its intended positive connotations where breast cancer is concerned. For now, I hate pink.