Cancer Community

radiation room

Today I embarked on a journey to boldly go where… well… far too many people have gone before. No, this picture is not part of a Star Trek set. It’s the radiation suite that will welcome me for the next 32 business days. Each day, I will lie on this table, place my hands behind my head in a mold made to position me just so, and hold still while technicians flip a switch that sends a field of radiation into my body.

What struck me when walking into the room the first time was the many molds just like mine hanging on the wall, and another wall of shelves filled with various other molds. Each of those molds represents another person who, like me, had their life interrupted in the last few months by the monster called cancer. A person who will carve out about an hour of each day for weeks in a row to shrink a tumor or kill potential stray cancer cells left after surgery. A person with a family, maybe a job they’re missing, probably plans for spring or summer that have been replaced instead by a treatment plan.

It makes me sad to think that so many others have been added to the roll of cancer patients. At the same time, there is some comfort in knowing dozens of others walk through the foot-thick door to the radiation suite each week. Maybe it’s a sense of safety in numbers? Although I will probably meet few, if any, of those people, I somehow feel a certain connection to this little cancer community, in our shared experience. And I pray that each of them makes it through radiation treatments without a hitch.

The Holy within the Harried

church of holy sepulchreEach Easter, I recall our trip to the Holy Land, which took place the week after Easter 2008. While scriptures are read and we sing songs about Christ’s resurrection, what springs to mind typically is the Garden Tomb—one of the places in Jerusalem that claims to be where Christ was buried. I blogged last Easter about why that’s the spot I associate with the Easter story.

But this year was different. This Easter, in hearing the familiar verses from the Gospel of Luke, my mind went instead to the Church of the Holy Sepulchre, the other spot that claims to be the site of Christ’s burial. There we strolled around a large, beautiful church, marveling at colorful mosaics and shiny relics, before settling in a long line to wait our turn to enter a tiny, enclosed altar space that commemorates the location of Christ’s tomb. The space is big enough for only a few people at a time, hence the long line.

What struck me in recalling our visit to that place is not what happened when we reached the altar and knelt before it, but what happened in the long line. What I experienced there was an acute juxtaposition of holy and harried. Most of the people there were with tour groups like our own, groups with places to see and schedules to keep. It’s a tour of the entire Holy Land in just a week to 10 days, after all—no time for delays. As the line crept forward, people began to push a bit, they grew impatient and irritated, they grumbled as they shifted their weight from tired foot to tired foot, and there was some fussing when it appeared folks were trying to cut in line (the last shall be first? I don’t think so).

At the same time, we tried to focus on the somber beauty of the place and remember that here—or somewhere close to here—is where Christ the Lord was buried and then rose again. Behind our group were some older women. From their clothing and language, I’m guessing they were from Eastern Europe somewhere. They seemed oblivious to the crowd. Some bowed their heads, others gazed in awe at their surroundings. And then one woman began to sing a beautiful tune. Again and again, she sang quietly, “Veni Sante Spiritus”—Come, Holy Spirit. The melody cut straight through all of the grumbling and irritation, and my spirit was lifted. Christ again became the center of my experience in that place (as He should have been to begin with).

This has been a stressful year—one of illness, surgery and treatments, unexpected home expenses, costly vet bills, parents struggling with various issues, and less than smooth sailing in raising teenage boys. It is easy to get caught up in the chaos of life and resort to grumbling and shoving. Although there is little I can do to stop the harried pace of life and the challenges that come my way, I can remember that the risen Christ dwells within me. Like the woman in the line, during the waiting, frustration, and jostling in life, I, too, can choose to sing—or cry out—Come, Holy Spirit.

Even with Hope, Death Stings

There’s a verse in 1 Corinthians 15:55 that asks, “Where, O death, is your sting?” I know that’s referring to the fact that, because of the resurrection, death doesn’t have the final say for followers of Christ. But this week, I’m feeling that death does have sting, and plenty of it—at least on this side of Heaven.

On Monday, my parents attended the funeral of one of their dear, old friends, the wife of a couple they met in the very first house they owned. My brother and I spent long summer nights playing with their kids, while the parents sat, talking and laughing over beers and a barbecue grill. This friend leaves behind a husband of 40+ years, two grown kids, and several grandchildren. Her husband was a wreck at the funeral. Yes, death stings.

Yesterday, half the people in my office attended the funeral of a colleague who died of cancer. She was in her 40s, I believe. Her husband now has to raise their two young children without the love of his life by his side. And their kids will win sports games, attend school dances, have their first kiss, and experience the many other milestones of their youth without the eyes of their mother looking on. Indeed, death stings.

For the families of the 149 people killed in an instant when a pilot intentionally downed a German airliner, death sure as heck stings, especially as they hear the story told and retold in the news.

When a member of your family or circle of friends passes away—particularly when it’s sudden or at too young an age—grief takes hold, and it’s hard to imagine a day when the sun will shine brightly again. Those who trust in the Lord know that death does not get the victory. Although this brings hope for tomorrow, it doesn’t erase the raw pain and emptiness that death can bring. Even Jesus was deeply moved at the death of Lazarus, before he called him out of the tomb. I guess the trick is learning to live comfortably in a space of both grief and hope—confident that over time, hope will tip the scales.

The Cost of Health

reduce-healthcare-costI got a bill today for my surgery. Apparently, a lumpectomy with associated pre-op, anesthesia, and a couple hours in recovery runs just over $25,000. That’s on top of $2700 for an ultrasound, $4500 for an MRI, $3000 for pathology, $2500 or so for genetic testing to see if I have BRCA mutations (I don’t), and another several hundred dollars at a pop for various consultations with the surgeon and oncologists. I’m bad at math, so I won’t add all that up. But, it’s an awful lot!

Thankfully, we have great health insurance that includes a health reimbursement account and a fairly low deductible and out-of-pocket max. So, this illness will not have a terrible financial impact on our family. But for some families, cancer, severe injury, heart attacks, etc. lead to serious financial hardship or disaster. And even if insurance pays the lion’s share of the costs, someone is still paying for the care.

Several of the projects I work with relate to prevention—initiatives and programs at local, state, and national levels that aim to change personal behavior, policies, systems, and community environments as part of a comprehensive effort to reduce the burden of disease in the United States. Frequently, I see figures that estimate the cost of health care in the United States—figures in the trillions of dollars. Figures in the billions for treating individual diseases like diabetes, heart disease, cancer, or stroke. And although those figures are impressive (not in a good way) and keep me excited about the work our department does, they are abstract numbers that are hard to really wrap my mind around.

Seeing that $25,000 charge on a bill addressed to me, however, drives the point home much more concretely. The cost of health care is outrageous. They say “an ounce of prevention is worth a pound of cure.” Obviously, there is great wisdom in that—not only from a financial perspective, but also from a pain-and-suffering perspective. I’m grateful there are many people and organizations—my colleagues included—who are working to help prevent illnesses that take such a huge toll on individuals and society. And I’m grateful to be able to contribute in my own small way to that purpose. I’m hopeful that in my lifetime, we’ll see real progress with dramatic reductions in diseases that cost a fortune and rob millions of people of a long, full life.

Don’t Assume You Know My Story

On Thursday, I began the set-up process for radiation. Once the technicians had positioned me on the CT scanner table, they called the doctor in. I’d met her just two and a half weeks before, and we had discussed the fact that I was waiting to hear whether chemo was needed before radiation. So, when she asked how I was doing, I said I was great, happy to be there instead of at chemo. I was surprised when she responded that it must be nice to have chemo over with and asked how the last round of treatments had gone.

As I stared back at this woman hovering over me, I suddenly felt like nothing more than another half-naked body lying on the table. I politely reminded her that I did not need chemo and that’s why I was back so soon. But what I wanted to say—to shout, really—was, “Didn’t you read my chart? Did you even really look at me? I’m lying here with a full head of hair. Does it look like I just finished chemo??”

All the other health care professionals I’d encountered up to that point seemed more in touch with who I was, or they asked lots of questions to get to know my history and my current situation. So, this doctor’s pretending to know was particularly disappointing by contrast.

I know physicians see dozens of patients a week. And in the case of this radiation doctor, we’re not setting up a long-term relationship. I will go in for my 33 treatments, have a few follow-ups, and—God willing—never see her again. Still, she has been given full access to my body; I’ve placed my care in her hands and trusted her to play a part in a fairly dramatic chapter of my life. Although I don’t expect any true intimacy between us, I do expect a certain measure of familiarity and a desire to know a little bit about me. There is, after all, a whole person attached to “left breast, invasive ductal carcinoma.”

I suppose what bothers me most, upon reflection, is that this doctor made an assumption about my story. She simply took a few obvious cues about me (I have breast cancer and am beginning radiation), ran them through the filter of her own experience (most women with breast cancer undergo chemo before they get to her for radiation), and applied a story that seemed to fit. But that’s not my story. Makes me wonder: What other assumptions do people make about me based solely on outward cues and the filter of their own experiences? What assumptions do I make about others in the same way? And, if I’m honest, what outward cues do I try to present so people make the assumptions I want them to?

I Like the Rollercoaster

In the movie Parenthood, there’s a scene I love. The family is racing around to get out the door to a child’s play. Steve Martin’s high-strung dad character, Gil, is feeling overwhelmed as he tries to wrangle everyone into the van. Kids are running and hollering. The scene is chaos, a reflection of how Gil feels about life in general throughout most of the movie. In the midst of this, Grandma, whom Gil thinks is a little senile, tells a story:

Grandma: You know, when I was nineteen, Grandpa took me on a roller coaster.
Gil: Oh?
Grandma: Up, down, up, down. Oh, what a ride!
Gil: What a great story.
Grandma: I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn’t like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it.

Grandma’s story has always resonated with me. Because there’s part of me that, like Gil, would like to just hop on the merry-go-round where there are no bumps and dips, you know what to expect, and you can settle in and relax. But that would get really boring. And frankly, I don’t know a single soul for whom life really is a merry-go-round. You might get to take a few spins on that ride, but sooner or later, you’ll find yourself careening down a track toward twists and turns, alternating between screaming and laughing and wondering if you’re going to lose your lunch.

This year’s cancer diagnosis launched me onto quite a roller-coaster, and this week, in particular, has been filled with peaks and valleys. Early in the week, it was like waiting in line for the ride–anticipating, feeling anxious, not knowing what the experience would hold. Wednesday, learning my treatment would not include chemo, felt like that moment of euphoria when you crest the big hill at top speed, hands in the air, squealing with delight. And yesterday, it was a jarring drop that sends your stomach into your lap for a moment. Nothing catastrophic–just another unexpected step, more waiting, another delay.

I did not take yesterday’s news well. I’d had enough of the dips and twists on this ride. My screams mixed with cries and I shouted and sobbed and beat my hands on the car steering wheel. It felt good to get some of the emotion out. This morning, I’m remembering that we’ve all got a roller-coaster to ride. For me, right now, it’s called cancer. For others, it’s called traumatic brain injury, Alzheimer’s disease, muscular dystrophy, death of a child, infertility, joblessness, or divorce.

The ride won’t stop just because you’re screaming and want desperately to get off. You’ve got to stick it out to the end. All you can do is grab the safety bar, hold on tight, and pray you make it to the end. If you’re lucky, you’ll have someone to hold your hand and scream along with you, you’ll have laughter mixed in with the screams, and you’ll remember to lift your head at the high points to appreciate the view (because a roller-coaster always has high points). And when you exit the ride, you’ll recall to those around you how scary it was, how difficult, how you weren’t sure you’d make it–yet, here you are.

And when life’s roller-coaster pulls up to the platform for the final time (it’ll happen for all of us eventually), hopefully, those who love you will remember how much you enjoyed the ride–all the dips and turns and bumps–and savored every moment.

Now… where can I find some cotton candy?

The Pen Is Mightier than the…Scalpel (or maybe at least as mighty)

The old adage “knowledge is power” is certainly true when it comes to navigating the health care system. I am an educated woman who happens to work in the field of health communication. I’ve written and edited hundreds of materials about diseases, treatment options, and prevention strategies. I understand a lot of medical terminology, and I’m savvy about where to search for credible answers to health questions.

Still, throughout this recent medical journey, I have found myself feeling unsure whether to call a nurse or sit tight at the appearance of some new symptom. I have been disappointed to learn that I misunderstood the order of things to happen and must wait, still longer, for some answers. And I have been frustrated to report something I thought was worrisome and out of the ordinary only to be told, “Oh, yes, that happens sometimes.”

Surely, there can be better communication in the health care system to clarify explanations and expectations.

How many unnecessary follow-up calls, urgent care visits, and stressful nights could be avoided if patients were given more complete and easier to understand information? I’m not saying we need laughably long lists of potential side effects like you hear on drug commercials–that doesn’t seem particularly helpful either. And, yes, every patient is unique. But having a list broken down by “These things happen to almost everyone,” “These things happen to some but not all people,” and “These things are uncommon but can also happen”–along with clear instructions for what to do if you experience those things–might give patients a better sense of when a situation is OK and when it is reason for action.

I have received many handouts and booklets about my condition and the types of doctors, tests, and treatments that I am likely to encounter. It’s not necessarily that there has been a lack of information, but rather that the information has come up lacking. One key element that’s often missing is the expected order in which various steps occur and the timing of those steps. When you plan a trip, you set an itinerary of where you will travel and how long each leg of the trip will take. Why can’t we have something similar for serious medical conditions? Patients might feel more in control if they had a better picture of what their health journey would look like.

If I’m having such a hard time with some aspects of my health journey, I can only imagine what it is like for someone with limited health literacy, someone who struggles to read or understand English, or someone who has to devote mental energy not only to figuring out what’s next for treatment but also how they will pay for that treatment, find transportation to get there, or secure dependable childcare so they can attend doctor or clinic visits.

We’ve come a long way, I realize. The push for plain language has improved patient education materials, and some health insurance companies even offer navigators or concierges to help patients find their way through the health care system. And it’s probably unrealistic to think we can ever take all the mystery and confusion out of medical care for patients and their families who, unlike the health care providers, haven’t devoted their life’s work to treating a given condition. But we can do better!

Better information presented more effectively can help improve patient outcomes, improve well-being for people dealing with acute or chronic health conditions, and contribute to efforts to close health gaps among vulnerable populations. All the advances in medicine can only go so far if patients don’t understand what is happening to them and how they can partner in their own health care.

A Feast for the Senses

The world around us is filled with an abundance of beauty and diversity and joy-giving sights, sounds, tastes, smells, and sensations.

The past few days have been filled with so many of those, I just had to stop and share my gratitude to the Creator for the sensory blessings.

  • Sight – Grass, even if it is still brown, a nice break from the snow and ice; photos of friends’ newborn grandbabies; the Pittsburgh skyline at night.
  • Sound – Conversation with a far-away friend; the symphony’s performance of Stravinsky’s Firebird Suite; birds chirping all day at the first signs of spring.
  • Smell – Muddy earth as it thaws; fresh goodies at the bakery; the fish market.
  • Taste – Fresh-made sushi; a vanilla frosted cruller; a juicy orange.
  • Touch – Warm sun on my face; sticky sushi rice; my husband’s hand in mine.

Every day can be a feast for the senses if we’re paying attention!

At Least It’s Not…

When someone we care about goes through something difficult, we want to speak words of encouragement and reassurance. We come out with statements like “It’ll be alright, just give it time.” Or “I know you’ll get through this. My aunt had [fill in illness or injury], and she’s fine now.” Or “Well, at least it’s not [fill in something that seems worse].”

Being on the receiving end of statements like these recently, I have found that–despite the best intentions–those words can feel less than helpful, especially if you’re feeling particularly discouraged, sick, or sore at that moment. My unspoken response has sometimes been, “How do you know it’ll be alright?” and “So what if your aunt had cancer and is fine now? I’m not your aunt.”

Of course, these things are said out of love and a desire to be hopeful and affirming. And I would much rather someone say something in the midst of trouble than remain silent. However, this new perspective has made me stop and think about what I say to someone undergoing a trial, and how my words might come across to the hearer.

  • “Don’t worry” can serve to invalidate the other person’s feelings of fear, anxiety, and concern. Someone walking a tough road needs to know it’s OK to worry, feel afraid, and be angry.
  • “I just know you’ll be fine” can sound Pollyanna-ish. For one, unless you’re a doctor, those words are not based in fact. And we’ve all known someone who, despite the best prognosis and medical care, was not fine.
  • Telling a friend she’ll be cured because you or someone you know was cured of that same thing depersonalizes your friend’s experience–as though everyone with a given condition is essentially the same.
  • “It’ll be OK in time” overlooks what is directly in front of the person. Maybe it’ll be fine later, but right now it really stinks, and your friend needs someone to live in that moment with her.
  • “You’ll do fine because you have such a positive attitude [have such a deep faith, are such a strong person, etc.]” can leave the person feeling guilty when they don’t feel strong, faithful, or positive. Or, worse, that if they can’t be strong, faithful, or positive, they won’t be fine.
  • And my new least favorite: “At least it’s not….” Sure, there could always be worse things, but trying to downplay the person’s situation through comparison doesn’t make it feel any less difficult.

Perhaps the most helpful thing is to acknowledge the person’s fear and the reality of the situation, rather than trying to make them feel better. Next time I want to comfort a friend in a difficult time, I hope I will remember to stick with statements like the ones that have brought me the greatest comfort lately: “Oh, no, that stinks. I’ll be praying for you.” Or “I’m thinking about you and hope everything will be OK.” Or, maybe the best one: “I’m sorry you have to go through this. What can I do to help? [Insert hug here.]”

Responding Differently to Lint

It’s Lent, that 40-day season leading up to Easter when many Christians give up something–like chocolate, beer, their morning coffee–as a small act of fasting and self-denial and a desire to grow closer to God. Each year, I struggle to think of what I should give up, and then I feel guilty when three days later I eat, drink, or do that very thing. Still, year after year, I give it a try.

This morning, as I was getting ready for the day, I realized what I should give up for Lent this year (and perhaps permanently): Lint–or more accurately, my typical reaction to it.

“Lint?” you ask. “Seriously??” Before you close this blog and move on to watch funny videos about cats, hear me out.

While getting dressed, I noticed a bunch of lint on my pants. I stopped putting in one leg after the other and began to pull off the offending little bits of fuzz. And I felt annoyed. Picking off lint interrupts the flow of my routine and delays the process of getting dressed and on to the next thing.

It got me thinking… What other “lint” situations do I run across that disrupt my routine or delay me and bring a response of annoyance, frustration, or irritation?

  • The mom in front of me at the check-out who takes forever to pay while she juggles a toddler
  • The cereal spill all over the kitchen floor as my son gets ready for school
  • The friend who asks me to volunteer in her place because she’s not feeling well
  • The coworker’s call that comes just as I’m logging off for the day
  • The elderly man who shuffles so slowly through the crosswalk that I miss the light

When I find my eyes rolling or my blood boiling in these situations, it’s because I’m thinking about me. I have stuff to do, places to be, and schedules to keep. C’mon, people!

But what if I put myself in the other person’s shoes? Instead of sighing heavily or grumbling under my breath, I can offer an understanding smile to the frazzled mom. Or patiently tell my embarrassed son that I’ll clean up the cereal while he finishes getting ready for school. Or cheerfully answer my coworker’s late-day question and take the opportunity to ask about her sick dad.

My reaction to these types of instances can be a blessing instead of adding to the over-abundance of negativity swirling around in the world. Better yet, I can choose to see the world and everyone in it through the lens of Christ’s love so that I never view someone or their circumstance or behavior as “lint” in life.