It’s October: Thinking Beyond Pink

Ah, October. Time for store end caps to display pink products of every ilk and Facebook feeds to fill with pink ribbons. People who are affected by breast cancer have many different feelings about this month, not all of them positive, but I won’t go there.

Instead, I thought I’d do some awareness raising about METASTATIC breast cancer—or MBC. Stage 4 breast cancer. Because that’s the type that kills people. If we can stop breast cancer from progressing to MBC, we can stop people from dying from breast cancer.

Did you know?—

  • An estimated 154,000 women are living with MBC; 42,000 of them will die this year (about 115 each day). Men get MBC, too, but in small numbers, and I didn’t find stats on that.
  • Three out of 4 of them originally had an earlier stage of breast cancer (stages 1-3) and saw their cancer return in other areas of their body (typically liver, bones, lungs, brain). That’s what metastasis is—the spread of cancer from one part of the body to other parts.
  • The other one-quarter of women with MBC were diagnosed with this advanced cancer out of the gate (called de novo).
  • An estimated 20-30% of women with early stage breast cancer will develop MBC—maybe immediately, maybe many years later.
  • We don’t have really good statistics on women with MBC because the cancer registries don’t collect data on women with distant recurrence (metastases). The registries currently only collect initial breast cancer diagnoses.

Survival rates for MBC have improved over the past several decades, but prognosis still isn’t great. According to a 2018 study published in JNCI Cancer Spectrum, an international, peer-reviewed, open access journal:

  • The median survival increased from 21 months to 38 months from 1990 to 2010. That means, based on the latest data available, the average survival is now 3 years, 2 months.
  • But survival rates are not uniform among women with MBC. There are differences by type of MBC.
  • For patients with estrogen receptor (ER)-positive MBC, the median survival increased during 1990–2010 from 32 months to 57 months (4 years, 9 months), and for ER-negative MBC patients from 14 months to 33 months (2 years, 9 months). **I have ER-positive MBC so I suppose I’m one of the lucky ones.
  • Among studies of patients with de novo stage 4 MBC, median survival increased during 1990–2010 from 20 months to 31 months (just over 2-1/2 years).
  • Average survival times are just that—averages. Women’s experiences can vary widely depending on how aggressively their cancer is growing, how well they respond to treatment, how well they tolerate treatment side effects, how much their cancer morphs and mutates, what other health conditions they have, how old they are, and any host of other factors.

Data talk about survival rates for women with MBC. But what they don’t talk about is what living with the disease is like. Women with MBC will be in treatment for the rest of their lives. Because the treatments they receive are intended for the long(er) haul, they may not cause some of the same effects as treatments given to women with early stage breast cancer. Many women with MBC can push through life looking like everything is “normal,” but they face many struggles.

  • Many face pain or other discomfort every day.
  • Most face side effects from treatment—nausea, loss of appetite, diarrhea, dizziness, extreme fatigue, dry mouth, mouth sores, lymphedema, hand-foot syndrome, hyperglycemia, low red blood counts, low white counts resulting in compromised immune systems, cough…. the list could go on.
  • Many can no longer work due to pain, fatigue, and other symptoms of disease. They may go on permanent disability and experience a significant cut in income as well as the loss of a job they enjoyed or that brought them a sense of pride and accomplishment.
  • Many experience anxiety, depression, and stress from knowing they may not live very long—what happens to their children, spouses, parents when they’re gone?
  • Women with MBC may feel forgotten or left out of the breast cancer conversation because they don’t fit the narrative (get diagnosed, go through treatment, be declared a survivor, go on with life and inspire others with the fact that you overcame cancer). And some people assume if your cancer has spread, you must not have gotten an early enough mammogram or done all the treatments you should have, or you otherwise did something wrong.

Relatively little research funding is earmarked for MBC specifically.

  • Some estimates show that as little as 2-7% of breast cancer research dollars for breast cancer go to studying metastatic disease.
  • Researchers know little about how and why breast cancer occurs, recurs, or spreads and why some women progress to MBC and some remain cancer free after early stage treatment.
  • If researchers can figure out how to stop breast cancer from spreading to distant sites, like the liver or brain, they can significantly reduce the number of people who die from breast cancer.

This month, if you choose to donate to breast cancer causes, consider giving to METAvivor (https://www.metavivor.org/about-us/), which is dedicated to research specific to metastatic breast cancer. And feel free to share this blog to raise awareness that there is a group of women and men who face breast cancer for whom there is no ringing of a bell or “You did it!” high fives at the end of treatment, but for whom the end of treatment means the ultimate end.

Tired… but Grateful

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.

“Night” – Aristide Maillol. This statue in the Metropolitan Museum of Art depicts how I often feel.

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?

Piecing It Together: Reflections on the Artistic Process

In a quest to fill my days with something productive, now that my health has led me to leave the workforce, I have taken up creating mosaics. So far, I’ve completed three 6 x 6-inch squares with fairly simple designs. A couple have gone to friends as gifts. The creative process has been quite therapeutic, and each step is meaningful in its own way.

Step 1: Break things. The first step for any mosaic is taking tiles and ceramics and breaking them into small pieces. These pieces become my medium. I try to nip the tiles into the shapes I’ll need to create my vision, but there’s a lot of randomness to the breaking, too. Even when I have a shape in mind, the tile or dish in my hand may have a different plan for how it will crack. The therapeutic part here is that I can take out some of my frustration, anger, or anxiety on the tile and ceramics rather than directing it at people around me or bottling it up inside. And the randomness of the tiles breaking is a good reminder that I am not in control—and yet, in the end, I still wind up with what I need to complete a project.

Sunrise: Rejoice and Be Glad

Step 2: Bring the design to life. Once I have a collection of pieces to work with in the colors of my design, I start applying broken bits to the surface, fitting them together into the shapes I’ve designed—a landscape or a flower or maybe just a pattern of colors. This part of the process is almost like meditation. I can spend a couple hours at a time, focused solely on where to place each piece, trimming or reshaping a piece if needed, and readjusting bits when I run into a challenge. It’s like assembling a puzzle I’ve created in my own mind.

During this time, everything else seems to wash away. Thoughts of my illness, treatment side effects, or the next doctor’s appointment disappear. Worries about my boys off at school subside. Questions and fears and doubts flee. My mind is engaged in a single task—creating the art before me.

Broken but Beautiful

Step 3: Fill the gaps. Once the mosaic has taken its final shape, it’s time for grout. Although the image is fairly clear at this point, there are gaps between all the pieces. The grout fills those gaps and brings all the pieces together into a cohesive whole. It is this step that’s perhaps most meaningful to me. All of the individual, broken pieces are still evident, but they are held together by a unifying element that not only serves to fill the empty spaces but also becomes an integral part of the art itself.

I feel these days much like the tile and ceramic pieces, fractured and dislocated. My body is broken by disease and side effects of the medications meant to treat disease. My family is split by distance as my boys pursue their education away at college. My vocation is no longer in tact. Yet, within all that brokenness, there are unifying forces that hold me together and fill my gaps: a God who holds me tightly (though I sometimes fight against Him), a loving husband and family who are always there for me, and a group of friends who encircle me closely. They lasso the broken bits of my self, re-assemble them, and help patch me back up—but often not before challenging me to sit and examine the pieces and acknowledge the pain, fear, or confusion in them. And just as the grout between the mosaic pieces is part of the artwork, those people in my circle become more and more a part of who I am.

Step 4: Reveal the final shine. The last step in creating mosaics is buffing them. As you wipe away the excess grout, it leaves behind a residue, which results in a hazy film on the pieces. A careful polishing of each piece ensures that viewers see the mosaic in all its shine and shimmer. Here, too, is a metaphor. The same people who support me and help wrangle my broken pieces also play a role in shining up the creation that is ME—helping to remove the mental, emotional, and spiritual film and filth that can accumulate and obscure my true self.

Beauty in Bloom

Step 5: Admire my handiwork. I said buffing was the final step, but that’s not quite right. There is one last step—to admire for a moment what I’ve created. By no means are these mosaics masterpieces, but they reflect a God-given creativity that’s recently been loosed within me. I’m not sure if it’s a new quality that developed for this time when I need something to do with my mind and hands, or whether it was there all along, lying dormant while I was busy with other things, but it is a part of me that begs for expression these days. Stopping to inspect each mosaic and appreciate the work of my hands is a vital part of the process and an opportunity to be grateful in this season. With all its challenges and frustrations and fears (I will never say cancer is a blessing in disguise), this season has also brought great joys, deeper relationships, new friendships, new opportunities, beauty, and exploration.



Anniversaries of the not-so-good stuff

Today, I saw a segment on a morning show about the 42nd anniversary of the death of Elvis Presley and all the events planned in Memphis to mark the date. That struck me as sort of strange. Not that people would celebrate Elvis—he was a musical icon whose music lives on—but that they would do it by marking his death.

I suppose marking the death of someone important to you is commonplace, as is marking other tragic or difficult events in life. I see a lot of people post on Facebook that it was this day however many years ago that their mom died, brother passed away, a beloved pop star overdosed. I’m part of a Facebook group for people with metastatic breast cancer, and folks frequently post that it’s their cancer-versary—marking their date of diagnosis.

Maybe I’m unusual, but I don’t tend to remember exact dates of loved ones’ deaths or my date of diagnosis with MBC. I have a general sense of month and year, but not the exact date. And I don’t really do anything to mark those events. They feel like anti-versaries (pardon the bad play on words).

In part, I think maybe I subscribe to the idea that we should mark and celebrate good events but not spend a lot of energy marking the bad ones.

Where the death of loved ones is concerned, it’s not that I don’t want to remember them, but rather that I want to remember them as they lived. And I find I don’t need a specific date to mark their passing, as I miss them routinely, all through the year—at milestones, when I hear someone whose voice sounds like theirs, when I glance at their picture in our home, when I experience something funny or touching and wish I could share it with them. I don’t find any value in recalling that so-and-so has been gone 5 years or a decade or whatever. If it’s someone who was important to me, their death often seems both like yesterday and like forever ago simultaneously.

As for my cancer-versary… I know I was diagnosed in August 2017. But I don’t know the actual date top of mind. For me, a general sense of how long I’ve lived with this disease is enough. I’m not going out for drinks with friends or lighting a candle or doing anything special to mark the day I got the official news. It’s not something I really want to dwell on. I wrote about this a bit for my first cancer-versary—the mixed feelings of “Yay, I made it another year” and “If there’s a countdown to my demise, then, gee, that’s another year gone.”

Plus, where the disease is concerned, I don’t need any extra help remembering it. I live it every day—the ups and downs (and, lately, more downs). I’ll be darned if I’m going to give cancer a special date of recognition.

I’m not saying people shouldn’t mark deaths, tragic events, and other sad/bad things in their lives. We all process losses and trials differently. It’s just not particularly meaningful or helpful for me. So, this August, I’m going to focus on sending my younger son off to college for the first time, work on planning a trip to celebrate a good anniversary—25 years of marriage on Sept 17, and adjust to yet more new medications (thanks to continued disease progression). My diagnosis date—whenever it is—can come and go quietly in the midst of it all.

On the Water: A Vacation Moment

I sit on the short wooden dock

Feet dangling in the cool lake water,

Waves rippling around my calves. 

Tiny fish school below my toes

Eagerly biting at creatures smaller than they,

Invisible to my eye. 

A duck family makes another pass, giving me wide berth,

Mama voicing a low and constant quack

To keep the youngsters moving on course. 

The wind tangles my hair into disarray,

The shadow on my lap resembling Medusa’s locks. 

A boat races by, squealing children on board. 

Its wake enlivens the water below me,

Splashing my knees and moving my relaxed legs 

Back and forth and back again. 

An industrious ant approaches and dances around uncertainly

Before detouring around my giant obstruction in its path. 

The chilly breeze across the water

Offsets the warmth of the sun’s rays on my shoulders 

As our home star begins its descent in the evening sky. 

And I drift into a special peace that comes from being on the water,

Cares washing away, my soul resting fully. 

Exploring New Things: Art and Poetry?

I’ve realized that for the past 25 years or so, I’ve not felt entirely in control of my time. Between parenting and working, there were many external forces determining my schedule and activities. Bedtime routines, sports practices, client deadlines, project team meetings, school schedules, etc. Most of the hours of my day were already spoken for before I opened my eyes each morning.

Without a job to clock in for and boys who are now basically adults doing their own thing, I find myself with many hours to fill day after day … with what? One can sleep in only so long and nap so often! And I quickly learned that watching daytime TV is a path to insanity.

I shared with my counselor that I was struggling to figure out what comes next. She suggested I do something creative with my hands—to get out of my head. (Apparently, she has ascertained I can over-think things. What? Me?). In doing so, I might open up new interests or outlets that I’d never considered. At the very least, I’d spend my time in an enjoyable way.

So, on a walk the other day, I let my mind wander. What could I do that’s creative with my hands? I happened to notice some random mechanical parts, probably from cars, along the sidewalk. One thought led to another, and next thing I knew, I went back and picked up those items and created an art piece from them.

Then, inspired by the process, I wrote a little poem of sorts. It also reflects my current feeling of being broken and not very useful, yet hopeful for the promise of being remade, discovering new things about myself, and contributing differently along this journey.

I hadn’t planned to share either with more than a few folks, but in an act of vulnerability, I’m posting in this blog, trusting my readers to be kind. The next Van Gogh or Emily Dickinson, I am not. But it was a fun process and did seem to unlock some latent creativity synapses. I already have in mind the next little bit of art I’d like to create. Luckily, “art” and “poetry” are subjective, so there’s no wrong way to do it, right? So, here goes nothing…. (don’t laugh!)

Brokenness Remade

Pieces and parts

Broken, abandoned, lost.

Once shiny and sturdy,

Useful or essential,

No longer so,

Hidden among the weeds 

And in sidewalk cracks.

Perhaps their disappearance

Noticed initially, 

Perhaps not.

Likely replaced, without hesitation.

Of fleeting interest, maybe, 

In their out-of-place existence

To curious passers-by

But given no real thought.

No longer of necessity 

Or consequence

In their damaged state.

Now revalued and remade

By eyes with different perspective.

Gathered and collected,

Elements of something new,

A re-creation.

Reimagining Work in a New Season

In consultation with my doctor, we decided it was best if I file for my company’s long-term disability benefits and stop working so I can focus more on my health—rest more, reduce stress, and better cope with side effects of treatments. I’ve been on short-term disability for about 6 weeks, and that time has shown me that it’s the right move to step away from the workforce.

I have felt a bit better removing the work stresses from my life (though the paperwork mountain that comes with filing disability provides stress of its own), but I’ve also felt a little bit lost. I’ve worked in the same field for 25 years, and it feels strange to think I won’t be doing that anymore.

Many people have told me, “You’re not what you do.” And I believe that. But I also have felt “at home” in the work that I do. I have truly felt I was working within my strengths and gifts, and feedback from managers and colleagues confirmed that. In fact, one colleague recently had a sign made for me with the nickname I picked up on one our projects (at right).

I have derived joy in improving the words someone has written so they can better deliver a message to the intended audience. And there’s been great satisfaction in taking a pile of source material and writing a report, fact sheet, or website that conveys useful information in a way that readers can easily understand and act on. That this work has been done in the context of public health means that what I wrote or edited helped people learn, make healthier choices for themselves and their families, better comprehend complex medical jargon, or access services they need. My work contributed to helping people and communities flourish. It felt like Kingdom work.

So, then, why stop doing it? As with many jobs, mine had deadlines, challenges, quick pivots in scope or direction, crises and rushes, meetings and more meetings, extra hours worked to meet client demands, unrealistic requests from project directors, and expectations that I perform to a certain level. All that led to stress. Pre-disease, that stress was sometimes hard to manage, but every job has stress, so I just dealt with it. And for the first 19 months after my stage 4 diagnosis, I continued to deal with it. Over time, the added stress of disease and medication side effects and frequent doctor visits became too much. Being absent often, not feeling well, and being distracted by any number of things related to my condition made it increasingly difficult to do a high-quality job, and the combined level of stress was surely bad for any healing processes we are trying to bring about. I was having trouble sleeping from worry—about what was on my plate for the next day and about my capacity to do it all, on top of the worry of whether treatments were working or what an upcoming scan or blood test would show.

I feel relief to have made the decision to put my job aside in favor of my health and using my energy for self-care and the care of my family. I know it’s best. I also know that my job title is not my whole identity. But writing and editing certainly IS my vocation. It’s something I feel I need to do, maybe what I was made to do. It satisfies my soul. And I feel that putting words together or finessing others’ words contributes in some way to the world—at least my corner of it.

So now, I suppose the challenge is to find ways to put the gifts I have to use in other ways. To write on my own time, when I feel like it, under no pressure. I know… this blog is writing. But I like the sense of helping when I write something for others or edit another’s work. It feeds a different part of my mind and soul than writing for my own pleasure or to get my own thoughts out of my head. Maybe I can volunteer my editing skills to a nonprofit organization or a small business that needs to communicate more clearly and concisely to funders, stakeholders, or customers.

I’ve also been trying to reframe my treatments, scans/tests, follow-up calls, and self-care (including naps) as my new “job”—doing whatever I can to give myself the best shot at long, quality life. Every month and year I can continue on current treatments gives the chance for medical discoveries to turn the tide on this disease. Hey, if they come up with a new treatment that cures my cancer or keeps it at bay with a few, minor side effects, I’ll be more than happy to go back to a paid, full-time job. All the more reason to find outlets for writing and editing in this new season—to keep my skills up, just in case.