I 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.

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?

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 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.

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!

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.]”