Two years in living with incurable cancer and I’m tired. Tired of all of it. But for each thing I’m tired of, I can usually find something to be grateful for. (OK… maybe not for each thing. Like the diarrhea side effect—hard to be grateful for anything in that. TMI? Sorry.)

Note that phrasing—“I can FIND something to be grateful for.” It is often a conscious effort to look for the good. Sometimes it is quite hard to find it and stay focused on it when crappy stuff closes in. I am definitely still in training where this endeavor is concerned. Some days, I can’t get past the “tired of it all” feeling, and honestly, I think most people would understand if I took up residence in that camp permanently. But life is much more positive and enjoyable when I can break through that space and enter a place of gratefulness.

How does it work, this trading “tired of it all” for gratefulness? It goes something like this.

I am tired of feeling tired all the darn time. Profoundly fatigued. But I’m grateful that I have been able to step away from my job so I can rest. I’m grateful for a friend who invites me regularly to walk because, counter-intuitively, exercise helps with the fatigue. I’m grateful for a husband who picks up my slack when I just can’t muster the energy for what must be done.

I am tired of feeling sick—nausea, wooziness, a horrible taste in my mouth, lack of appetite. But I’m grateful for ginger chews that take the edge off nausea. I’m grateful for friends who drop off a meal unexpectedly with food that seems to be just what tastes good at the moment. I’m grateful for shedding some pounds because of my lack of appetite.

I am tired of medicines. Taking pills daily. Getting injections every month. With each new med, comes new side effects. What a drag! But I’m grateful those medicines exist. I’m grateful that new medications are being developed and become available every year or two. And I’m grateful to have good health insurance that makes all those medicines affordable.

I am tired of doctor’s appointments. Every month, venturing to a major cancer center downtown, waiting my turn in a room filled with other women with cancer—some without hair, some using canes and walkers to get around, some frail and sickly looking. A reminder of illness (as if I needed a reminder) and a glimpse of what my future may hold. But I’m grateful for the skillful medical team that treats me. I’m grateful that my oncologist is on the leading edge of metastatic breast cancer treatment and research. I’m grateful for the friendly faces that greet me when I check in each visit.

I am tired of being poked and scanned. Blood work sometimes as often as weekly, scans every few months. Not only do I face the physical discomfort of someone sticking a needle in my arm, I face the emotional stress of wondering what the latest tests will show, particularly this past year in which each scan has shown further trouble. But I’m grateful that these scans and tests exist, so my doctor can see what’s going on inside with this cancer monster and can chart a course to try and kill it. I’m grateful for health staff who can easily find my veins and poke me without me feeling it (especially thankful for Stella, who is a blood-drawing wizard!). And I’m grateful for doctors and physician assistants who deliver news from my scans with compassion when there’s progression, or with excitement when things look good.

I’m tired of being a cancer patient. I hate this part of my identity. It’s not anything I’d wish on my worst enemy. But I’m grateful for everyone who has walked alongside me, who has called to see how I’m doing, texted me to let me know they’re thinking of me, prayed for me, sent notes of encouragement just when I needed them, and listened to me whine or cuss. I’m grateful for friends who also talk about stuff other than cancer, who let me be “normal.” I’m grateful that I’m able to take trips and go out to dinner and enjoy camping get-aways and take in a show or the symphony—and for awhile forget that I have cancer.

I’m tired of this life of disease. I miss my old life and wish I could go back. But I’m grateful for each day I have, for each morning I breathe anew and get to keep moving forward on this journey. I’m grateful that my doctor doesn’t think I’m going anywhere anytime soon. And I’m grateful that each good moment seems that much more good, beautiful, meaningful, amazing, and powerful because of its contrast to the negative moments I face regularly.

Perhaps you have your own “tired of it all” situation? What would it look like if you applied a gratefulness filter, consciously looking for something positive among the negative?

Early in January, I learned that the cancer in my liver has grown—“substantial progression” the PET/CT scan results say. Two doctors, however, have said it’s still only a fairly small part of my liver affected; I like the oncologists’ interpretation better than the radiologist’s.

This progression was not entirely a surprise. The monthly tumor marker tests had been rising slowly over the course of several months, so we figured something was going on. Now we know and can chart a course forward.

My oncologist recommended me for a clinical trial that looks like a good fit given my type of breast cancer, my treatment history, and my current health status—that is, still symptom free, not showing any decline in liver function, and generally feeling good, minor side effects from medications notwithstanding.

So, a few days ago, I met with a new oncologist, the principal investigator of clinical trial NCT03280563—A Study of Multiple Immunotherapy-Based Treatment Combinations in Hormone Receptor (HR)-Positive, HER2-Negative Breast Cancer, also called MORPHEUS-HR+ Breast Cancer. Sounds like something out of “The Matrix.” The study is being conducted in 22 cities, including Pittsburgh. It’s being fielded out of Hillman Cancer Center and UPMC Magee Women’s Hospital. I’ll be going to Magee.

Immunotherapy hasn’t worked well in slowing or reversing progression of HR-positive, HER2-negative breast cancer (like I have), so this test is exploring the combination of an immunotherapy drug with one, two, or three other drugs that are already used regularly or have shown promise through other studies to stop cancer growth, kill cancer cells, or otherwise disrupt the disease process. The hope is the other drugs will boost the effectiveness of the immunotherapy. The study will look at how safe the drug combos are and how well they work, as well as which doses seem to provide the best outcomes (if any) for the least amount of adverse events and side effects.

In the big picture, the goal is to determine if one or more of these combos offers another weapon in the arsenal against this disease. In the small picture—that is, my personal disease—the hope is that whatever treatment arm I’m assigned to will stop the cancer from progressing further for awhile or, even better yet, knock it back and shrink it.

I still have to complete the screening process that’ll include a liver biopsy (to make sure the tumor hasn’t changed in characteristics and also to get a sample for genetic testing) and several blood tests to confirm I’m a good fit. The doctors fully expect I will be. I should know for sure in a couple weeks. I’m excited about the possibilities.

While talking with folks about this recent development, I’ve realized that not everyone understands fully what a clinical trial is all about, so I thought I’d provide some basic Q & As.

What exactly is a clinical trial?

A clinical trial is a type of research that studies a test or treatment given to people. It’s one of the ways scientists make progress in finding new disease treatments or cures. A trial could study a brand new treatment or an existing treatment that’s used in a different way or in a different combination. Clinical trials study how safe and helpful tests and treatments are—often in comparison to the type of treatment that’s usually given for a condition (called the “control). When found to be safe and helpful, the studied treatment or test may become tomorrow’s standard of care. 

The National Comprehensive Cancer Network has a really good overview of clinical trials, written in easy-to-understand language, if you want to read more.

Couldn’t you end up getting a placebo and getting no benefit?

A placebo is an inactive medicine that’s given to a control group in a trial when there isn’t already a standard of care to which a new treatment is being compared. The trial I’m on doesn’t have a placebo. It’s comparing the new combo treatments to an existing standard of care (Faslodex)—that’s the control.

Participants in the trial are assigned randomly by a computer to one of the groups. I could end up in the control group. Initially, I was concerned about that because it seemed like a lesser treatment than I had been getting (I was on two meds, and the control is only one drug). But the research oncologist assured me that control medication should be beneficial by itself. And if it’s not, we’ll know quickly and can pull me out of the trial. My regular oncologist had already mapped a new treatment plan outside of the trial, so I’d either start that or we’d re-examine options.

Although the assignment to groups is random, it is not blinded. Participants will know which group they’re assigned to. I’ll know exactly which medication(s) I’m getting.

What if the new drugs don’t work? Or they work but greatly reduce your quality of life?

That’s a legitimate possibility. It’s a test—so we don’t know whether these new drug combos will work at all and if they do, how well or for how long. And we don’t know if they’ll cause side effects that are tough to live with or if they’ll be hard on the body in ways that make it unsafe to continue taking them. But, I’ll be watched really closely. Scans will be scheduled about every 6 weeks, and I’ll have blood work every couple of weeks. If there are signs of trouble, we’ll know in a matter of weeks. And if I feel uncomfortable about anything at any time, I can pull out of the trial.

If the cancer progresses on the trial drugs, I could be offered a second treatment stage with different medications. Or I could choose treatments outside the trial. In the latter case, I’d go back to my previous oncologist and continue with plan B he and I discussed before.

Does going into a clinical trial mean you’re out of “regular” treatment options?

No. Clinical trials are not a last-ditch effort. In fact, some women with metastatic breast cancer have gone into clinical trials as their first line of treatment. In the case of this trial, to be eligible, I had to progress while on Ibrance or Verzenio but NOT yet had Faslodex (the control drug) or any chemo. In other words, I had to be pretty early in the treatment process. There are many other options still available to me outside of this trial. I’ve heard of many women going through a dozen or more lines of treatment; I’ve only gone through the first line.

Is the treatment considered “experimental”? Will your insurance pay for it?

Clinical trials have sponsors (often drug companies or organizations that receive federal grants) who pay for the trial’s medications and many other associated costs. And before I start any tests of treatments, the trial staff where I’m participating will check with my insurance company to make sure there aren’t any financial surprises.

Are the risks really worth it?

Everyone needs to decide for themselves whether participating in a clinical is worth the potential risks. You’re taking medication that hasn’t been proven. It might not work. It might cause unexpected and even serious side effects. That’s a lot to consider.

I’ve weighed the pros and cons and decided it IS worth it to participate. If the treatment I receive in the trial works, I’ve added a treatment option that wasn’t on the list for me before. If it doesn’t work, it’s a small setback but not one that should have a serious impact on the disease.

Regardless of the outcome, I’ll be contributing to progress in learning what works, or doesn’t, to fight metastatic breast cancer. It makes me feel like I’m doing everything I possibly can—both for myself and for the greater good.

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. 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.

Tonight, Brad and I will attend a fundraiser for the Toonseum, a small gem of a museum in Pittsburgh dedicated to the cartoon and comic book arts. Brad and I aren’t particular aficionados of this art form. In fact, our interest probably fits best in the passing fancy category. Our impetus for buying tickets to the event was that a good friend is on the board of the Toonseum, and we love our friend, so we want to support his passion. Meeting Pittsburgh “royalty”—like Rick Sebak, Pittsburgh Dad, and David Newell (Mr. McFeely from Mr. Roger’s Neighborhood)—was also a draw, I won’t lie.

But the more I’ve thought about it, the more I’ve realized that supporting the Toonseum is worth doing just on its own merit. Cartoon and comic book art is every bit as much art as Monet’s “Water Lilies” or Bach’s Brandenburg Concerto. It is worthy of saving and displaying and cherishing—not because of how many people might like the art form—but because it represents someone’s creative expression. It is worthy of considering because, like all art forms, it is often a reflection of society, or in some cases maybe, how society could or should be. I may not understand some of it or be drawn to its content or visual form, but it has intrinsic beauty and worth.

If left to my own devices, I’m guilty of appreciating and making time for only creative forms I enjoy most—baroque and classical music, Impressionist and Romantic paintings and sculpture, movies that make me smile, literature with a great story and redeeming ending. But now and then, it is exciting and important to experience forms that fall outside our norm—whether that’s a newly composed atonal piece at the symphony or an entire exhibit with humanoid forms made out of stuffed pantyhose at the art museum.

I’m also guilty of having held a fairly narrow view of what creativity or art is, reserving that designation for something you’d see on a gallery wall, read for a book report, or hear from a symphony or band. However, I am learning to see that creativity takes many forms, and we are all creators in our own ways. Whether coming up with a new superhero, writing and delivering a powerful sermon, growing a garden, or arranging furniture in a room to maximize its use and beauty—(or maybe even writing a blog??)—these are all acts of creativity, and they express something about the character, experiences, and environment of the maker.

The challenge when encountering something creative is to not evaluate it through our personal lens of what is art or what is “good,” but rather to simply appreciate the creative process, the person behind the work, and the fact that our Creator has made us all to be creators.

Last week was rather upsetting to me as I realized I can no longer continue doing my job 100% when treatments take me away from the office for 15% of the work week. I had to tell a project lead that I needed to pull back from his work for the next month or two. He was exceedingly understanding. And several managers have reminded me that I should not feel like I have to keep doing it all. One person told me that I need to take off my Wonder Woman cape for a little while.

Pushing some tasks off my plate was a big relief; I feel much better able to cope with treatments and life this week. But what I’m wondering is, for so many of us, why does it take a serious illness or another major life event to feel like it’s OK to say, “No, I can’t do everything that everyone wants me to do”? Why do we ever feel like we have to don the Wonder Woman (or Superman) cape?

I have colleagues who work nights and weekends routinely to catch up. Friends who struggle to meet the demands of three or four volunteer positions. Acquaintances who travel so often that they miss family milestones. And fellow mom buddies who feel they must orchestrate elaborate birthday parties, craft homemade teacher gifts, or come up with 25 novel scenarios for their Elf on a Shelf each Christmas.

We end up doing so much that we lose the joy in any of it. We grow resentful of jobs, service opportunities, even kids’ sporting or theater events because there just aren’t enough hours in the day. We don’t have the energy. A generation ago, at least folks observed a sabbath day each week (whether Sundays or Saturdays), reserved for relaxing and family. Today, it’s just another day for running errands or checking work email to avoid starting the new week too far behind.

What would happen if we all took off our super-capes and set some limits? Not because we have to for health reasons, but because we want to. Sure, people will be disappointed. Some things won’t get done. We might even have to give up some status or (gasp!) money. But odds are, nothing that gets knocked off our to-do lists will be essential.

Although we might experience a tinge of loss or a hit to our pride in the short term, what we gain in the long term will be worth it: More time with family and friends. More time to read, enjoy a hobby, or be alone with our thoughts. We’ll set a better example for the next generation. And we might, just might, stop feeling so frazzled and stressed. How about it—Will you try hanging up your cape?

(photo credit: auntbunnysblankets, etsy: https://www.etsy.com/listing/111694506/child-wonder-woman-cape-wonder-woman)

A friend posted something on Facebook yesterday that really spoke to me:

“‘Recognizing the good’ does not deny the painful realities of life, but instead moves faithfully into the space of contradiction and says ‘yes’ to the good, true, and beautiful things that are all around us.” (a passage from A Movable Feast: Worship for the Other Six Days by Terry Timm)

I have found myself grappling in extra measure this week with being in the “space of contradiction,” trying desperately to fix my eyes on all that is still good and right in the world, yet coming face to face with the painful, tough stuff of life day after day.

Each morning, I am greeted by radiation techs who are smiling, warm, and caring—doing their best to make me comfortable. By all measures, beautiful examples of health care providers doing things right. Yet, I cannot deny the looming, buzzing cancer-killing machine that sits mere inches from my body. And the whole process of radiation remains a space of contradiction to me. It is intended for healing, yet with each passing day, I notice signs of the effects on my body that feel like anything but healing.

I found myself behind a hearse the other day. A shiny, silver Cadillac decked out with chrome trim, padded vinyl top, and curtains in the window. Inside, I could see the glossy, rounded top of a casket, the inside of which was no doubt lined with pleated, white fabric and a fluffy pillow to dress it up. The vehicle and the casket were intended to be beautiful and stately, bringing a measure of class and dignity to the deceased. Yet, the whole reason for their existence is death. I couldn’t help but think that somewhere, there was a family whose hearts were breaking at the loss of a loved one.

The grittiness of life exists alongside potential good and beauty in so many situations we encounter. It is a conscious decision to focus on the positive, the beautiful, the blessings. Sitting on my porch on a sunny, warm Saturday morning and enjoying the bustle of life in my neighborhood, that’s not so difficult. At other times, it is a hard-fought resolution not to be mired in the ugliness in the world—whether in my own little sphere or across the globe somewhere.

There’s a verse in Philippians 4 that tells us, “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.” I think that verse is in there because God knows we need to be reminded where to direct our minds in this world that is at once so broken and so glorious.

I know this post echoes others I’ve written—that idea of hope and good in the midst of trial or pain. Perhaps that’s a natural mental space to hang out in when facing a situation like mine. Then again, maybe it’s not so natural. There are plenty of folks I have encountered in the waiting room who clearly do NOT have that bent. Their faces are hardened into a frown, they complain often, and they seem, at least to me, to be miserable. So, I suppose I’m OK with not getting points for originality in my recent writings—if it helps me (and maybe the couple dozen folks who read this blog) to remember to choose to see the good.