Vulnerability is Risky

I blinked.

It’s true, I blinked. Now it’s almost September. Summer turning to fall. Flowers to leaves. Breezes to bluster. And in my case, an unwitting season of quiet amidst lots of crazy :)

So many of you have reached out with well wishes, check-ins and some worries. All I can say is thank you. You are truly my soul’s strength for this climb, even when I am suspiciously silent at times.

Let me explain, dear ones.

This summer was full of blinking. Our youngest graduated and moved to Brooklyn, New York. (So excited for him!) Our oldest secured a leadership position in a lab at the University of Michigan and is applying to PhD programs. (So proud of him!) In the midst, we became empty nesters, again. Can I get an AMEN from all the parents with college kids in the age of COVID? 

Last week, while walking in New York City, I saw a bold soul with a bright orange t shirt that said, “People who say ‘Go big or go home’ strongly underestimate my desire to go home.”

I like that.

Wait, did I just say that?

I’m always up for the party. And the after-party! I love a good kitchen swing-dance. Give me a conversation and cocktails. About the weather or your heartache. Space for celebrating. Space for lamenting.

Yet, here I was, realizing I had blinked.

From last summer to this one, I finished round after round of radiation treatment, three more surgeries, and took two valiant runs at endocrine therapy, both of which ended in, “Yeah, so that didn’t work so well…” 

In between surgeries and therapies, we traveled to Lebanon, to Israel, Italy, Wisconsin and New York.

I’ve also been serving as the Education Fellow for Treetops Collective, writing a trauma and resilience curriculum with beautiful women, New Americans, who experienced forced migration. This journey has marked my life in new ways. Precious ways.

And yet I was quiet.

Dana Jennings, who has written in the New York Times about his treatment for prostate cancer, so accurately captures the mix of feelings. “I was buoyed by a kind of illness-induced adrenaline during treatment. And once treatment ended,” he confesses, “I found myself ambushed by depression.”

And so Beloved, it is time to make peace with the paradox that is my current situation. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment. For others, it ambushes them weeks, months or even years after treatment ends.

For me, post-treatment depression kicked in with the increased pain and complications of endocrine therapy. I just wasn’t ready for the weight of measuring “quality of life” versus “quantity of life.” Neither was my fam. Or friends. I wanted to stay in the “so, you-made-it-through” season.

It seems denial as a coping mechanism can be quite a useful shield. But in the end, it reveals itself to be dangerously flimsy. Especially in the face of formidable love.

Love from family.

Friends.

God.

Do you know this feeling too, dear ones?

Our Creator knows the way our cells, our blood, our hormones, our marrow works. From the beginning to the end, and especially in the midst of. I am learning to forget the shield, the protection, the mask.

Vulnerability is risky, yes. But liberating. And powerful too. A formidable force.

I am learning to like weakness. I’d say bring it on. But that doesn’t sound very vulnerable, does it?

Not easy, is it?

Please know you have been close, all of you, the whole way, even in my silence. Each of your gifts, playlists, notes, cards, calls, flowers, texts, DM’s have burrowed into my heart. Deeply.

You are, yet again, priceless gifts.

mundane miracles

Greeting dear ones! Your notes, gifts, encouragements, and check-ins have gone straight to my soul as I navigated the strangest part of this climb—survivorship.

Drinking in the joy with our son, Caleb.

I just finished a six week recovery from my fifth surgery. The good news is that I’ve been experiencing many “firsts” again. If that sounds like an oxymoron, it’s because it’s been awhile since these lovely things have been part of my life:

Working. I am honored to be named a Treetops Collective Fellow in partnership with One Million Thumbprints (1MT). I am excited to be partnering with them by creating a curriculum focused on resilience.

Circles of Support leadership team, Treetops Collective.

Traveling. Stephan and I will be heading out today to begin our first overseas trip to Europe and the Middle East in several years!!  I am so excited to see the miraculous progress our 1MT partner Izdihar has made on behalf of Syrian Refugee women and children since our last visit. She has been busy with feeding and education programs on the new property they acquired in the middle of the COVID pandemic.

Izdihar, founder of Together for the Family, with her Syrian kids.

Finally, dear ones, I wish you a “Happy Lent.” I know that sounds like another oxymoron—happiness during a sacrificial season. But I am more convinced than ever that seasons of suffering and loss go together with seasons of joy and blessing. Why?

“There is nothing in life that cannot be made sacred,” says the brilliant author, Madeline L’Engle. “That is one of the deepest expressions of the incarnation.”

In these survivorship days, even the little things I experience throughout my day, things we may think of as mundane, show me just how near God is. Things like the first song of a robin in the Michigan spring. The warmth of dish water on painful knuckles. Deep breaths of sun-warmed air, reminding me I am still here.

So, whatever small things fill your days, may they be made sacred. God loves you in all your mundane excellence. Far more than you know.
Promise.

breathe

Every day my radiation team walks me from the waiting room to the “treatment cave.” (You just know that room is encased in lead!) They ask me how I am feeling. Sometimes I laugh. Sometimes I cry. I’m always tired. They console. They encourage. They cheer me on.

But mainly they remind me to breathe.

No, for real.

“Okay, deep breath now,” my lead tech, Bianca, says as she places a little black block over my heart so the green lasers can measure the air in my lungs. The radiotherapy room is big, freezing cold and dark. The table is hard, uncomfortable.

Bianca pauses for a few seconds as she and her partner “micro-shift” me to align the lasers with the three tattoos on my skin that look like freckles.

“Remind me to never play Jenga with you two!” When you can micro-shift someone—2 millimeters to the right, 1 millimeter up—imagine what you can do with a tower of  of blocks.

Bianca smiles. “You ready to hold still?”

“Yep. I’m banking on shooting lasers out my eyes today. Still waiting for those superpowers, you know.”

Then I am alone.

Arms above my head. Green lasers outlining the left side of my neck, chest, and armpit, like a monster staking out its turf. I close my eyes and try to ignore the itch on my forehead. There’s no moving once we start. Them be the rules.

The audio speaker above me crackles and I hear Bianca’s voice. “When you are ready, take a deep breath.”

I breathe in until my ribcage rattles a little. Then I hold it. The arms of the machine buzz and move around me like an octopus gathering its prey. I take comfort in its Stay-Puff Marshmallow smile topped off with a blue bow.

When you take a deep breath and hold it, your diaphragm, the big dome-shaped muscle located at the base of your lungs, pulls your heart away from your chest. This is known as a “Deep Inspiration Breath Hold,” or DIBH. (I know, what an acronym!)

Go ahead, give yourself a DIBH. Take a deep breath in and hold it.

When I was diagnosed with cancer on my left side, we knew radiation would be part of the treatment. The problem with radiation for lefties like me is the risk for heart disease. My heart is smack in the middle of the radiation field.

Okay, you can let out your breath now. Doesn’t that exhale feel good? So you feel inspired?

The radiation machine with its whirling arms can honestly feel overwhelming at times. The heat on my blistering skin. The pain in my shoulders. My bloodshot eyes.

But in the middle of the darkness, I hear a kind voice telling me to breathe.

“Inhale.”

“Hold.”

“Exhale.”

Once someone told me a story about a wise Rabbi who gave a young boy two pieces of paper. He instructed the boy to put one in his right pocket, and the other in his left. On the days when he was on top of the world and everything was going his way, he should reach into his right pocket where he would find the words,  “You are made of dust, and to this dust you will return.” When all the world was against the boy and he felt small, vulnerable, and alone, he should reach into his left pocket and read the words, “But for the love of you, God made the universe.”

“Okay Belinda, take a deep breath.” Bianca’s voice cuts through the cold air.

I inhale, praying, softly, just slightly above my breath:  “I am but dust, and to dust I will return.”

I hold my breath for the next 25 seconds, letting the message sink bone deep.

Breath prayer is an ancient form, appearing within the Orthodox tradition as early as the 3rd century. There’s even a word for God, Ruach, which literally means breath. The breath of God in our lungs.

Breath prayer is as simple as breathing. You choose one or two lines to meditate on while you inhale, and then exhale. For me, it calms fears and comforts doubts.

“You can breathe now,” Bianca says quietly.

Relieved, I exhale and say to myself, “But for the love of me, God made the universe.”

I can’t tell you how many times I have had to fight off tears as I let the those words roll over me. Infinitely valuable, loved from the top of our heads, right down to our toenails.

And made out of mud and dirt.

My son, ever the scientist, says we’re made out of carbon, oxygen and hydrogen. A little nitrogen and calcium too.

Sounds like dust to me. Deeply loved dust.

Thank you for making this climb with me, dear ones. With every breath today, may you feel the ruach of heaven fill your lungs.

still here

It’s already July, dear ones, and I am so very grateful that you are still here.

I’m still here too.

The whole Bauman family is currently battling COVID-19. Yep, after two full years of evading this viral menace, Omicron found us and took a serious bite. We did our best isolate, but it still got us. I am weirdly rejoicing this is happening now, however: my sutures are healed, so coughing and sneezing isn’t a risk. Chemo is done so blood cells are boosted. But it’s not letting go easy. It feels like a nightmare mix of flu and strep throat. Any and all prayers welcome for our encampment of sickos here 😊!

Good news first on the cancer front: I will start climbing the radiation mountain range next week. My radiologist, Dr. Bergsma, is a good one, taking tons of time to orient us to the path ahead in detail. Best news is chemo did its job: I only need 25 radiation sessions, instead of 40.

WHOOP-WHOOP!

After radiation, my lovely oncologist, Dr. Gribbin, will help us gear up for the endocrine therapy. Upwards of 10 years. B

But one mountain, one valley at a time, right?

My oncologist, Dr. Gribbin. Or is he my older brother?

Thanks to my awesome hubs, you got real-time glimpse of my surgery. Many of you have asked me to share it from my perspective.  I’ve reflected on it quite a bit. It was a doozy for sure. Telling you a bit of the story is good medicine for my soul.

May 9th dawned with the hope of progress. The good team at St. Mary’s injected radioactive seeds into my lymph nodes so they could identify them for removal. I won’t expound, but at one point I was balancing on a table 6 ft in the air almost upside down.

Call me an acrobat!

After they moved me into surgery, Dr. Caughran took my hand and looked me in the eyes: “We got this, Belinda. We can do this…”

I think I only made it through the “Heck yea…”  of my ‘Let’s Go’ speech before I was out cold.

I woke up in recovery feeling like a 2-ton elephant was sitting on my chest. Who would have thought ice chips could be so good? The plan from the beginning was to send me home the same day. Yes, we know, seemed crazy to us too after what was tantamount to a double amputation. But the data and our docs said it was safe and better during our age of COVID.

Before I was discharged, we noticed my right surgical drain was filling much quicker than my left. Like a whole lot quicker. And nausea. Icky nausea. Only 15 minutes in the car headed home, I asked Stephan to pull over.

So much for the ice chips.

Back in the car, only to pull over another 10 min later for another session.

At home, I was met with much love and careful hugs from our boys who had readied the house and made dinner. I headed straight to the bedroom, where my beloved, saintly sister-in-law and super nurse, Chris, emptied my drains, noting that the right side was bright red blood and full to the brim. We didn’t know it then, but I was bleeding internally (the technical words is hematoma), and much faster than we thought. Joshua came to check on me just as I started to vomit. He called for Stephan, and the two of them rolled me on to my side and helped me to stop choking. By this time, I had vomit in my ears and hair, but I didn’t seem to notice. I was fading in and out of consciousness.

Speaking of hair 😊 !

I remember Chris talking about an aggressive bleed. Stephan was on his phone talking to my docs. Joshua was on the 911 call navigating the rescue team. Caleb was on “consciousness duty,” kneeling in front of me, gently holding up my head which kept annoyingly flopping over to one side. He was asking me to regale him with stories of snorkeling with parrot fish in Costa 🐠 🐟!

Despite his all-star job, the walls started to close in and grow shadowy. 

“Belinda,” Chris leaned over, “We need to get you back to the operating room to find your internal bleed.”

The room was turning cold, and my fingers and toes went from tingling to numb. I looked up at Stephan  and saw tears in his eyes.  

Something was going deeply wrong.

“No, no, no,” I said, “This is supposed to be halfway, not the end…” I turned to Caleb, Joshua now at his side, and reached up to touch their faces. “You know I love you both…?” The room began to swim away from me as I took Stephan’s hand to attempt a delirious goodbye. “I’ve loved you since we were 15…”

Stephan cut me off. “No, Mrs B., we’re not doing this...”

I started to shake uncontrollably.

Next thing I know, I was throwing up on a kind EMT taking my plummeting blood pressure. As they loaded me into the ambulance, I remember glancing at the star-filled sky…

Most of you know I am a fighter. A fighter with gratitude. A fighter with regrets. I fight the pain left by bullies when I was a little girl, and the suffering left by warlords as a woman. I fight up mountains and through valleys. I fight to find the words that change minds and soften souls. And sometimes I even fight people the people I love.

But something profound happened to me that night. The day before surgery, my sweet friend, Tarah, sent me a text. She said she would pray through “the watches of the night” for me from Exodus 14:14: “The LORD will fight for you; you need only be still.”

That night, when I was unconscious and in the thick of it, Stephan reached out to Ashlee. She sent this text back:

As my body slipped into the initial phases of shock, all I could do was be still. In the ambulance, in the ER, the operating room, during the blood transfusion, and the recovery room.

It’s so rare for me to find strength in being still. If I’m honest, sometimes it’s hard to conceive of a God who fights for me. For the women in Congo. Yes! For the girls in Syria. For sure.

But for me? Do you ever feel like that?

That night, somehow, for me, stillness became a form of faith.

Here’s Stephan’s response to Ashlee in the wee hours of the morning:

What if I believe God is fighting for you and you can keep doing the same for me?

You are deeply loved and missed today, friends. Thank you for being here even when our journey comes to a bit of a halt. Your presence is life itself.

Be still.

Celebrating a successful surgery with Caleb.

she's a fighter

Hi Friends. 

Stephan here, standing in for Belinda. After a harrowing three days, Belinda is recovering from what turned about to be two surgeries, not one.

She’s a fighter.

But you already knew that. 

As I write, Belinda is receiving a blood transfusion. She says she’s “feeling weak.”  Of course with her personality, Belinda’s version of “feeling weak” is pretty perky :) True to form, when we asked her how she felt about the transfusion, she said, “I’m really grateful to the person who gave me blood.”

Belinda is receiving a transfusion because her hemoglobin dropped below the redline of 7.0. Hemoglobin can drop for a lot of reasons, but especially when you loose too much blood. Normal is 12 to 16.

Belinda lost too much blood. 

But let me back up and tell the story.

The double mastectomy on Monday took about five hours. Two surgeons, one a breast surgeon, the other a plastic surgeon, did the work. You may know that COVID changed how they do surgeries in a lot of hospitals. Belinda’s surgery is normally a 3 to 5 day stay in the hospital. COVID changed it to an outpatient surgery. 

Yeah, I know. We were a bit trepidatious too.

But the St. Mary’s staff helped us understand their success rates with similar cases over the past two years, along with some efficiencies in their health management system that seemed to make surgeries like Belinda’s possible without an overnight stay.

In the end, we phoned a friend.

Actually, Belinda’s closest friend, her sister-in-law, Chris, who is a first rate nurse. When our son, Caleb, introduced Chris to his girlfriend, Anya—who we absolutely adore!—he said, “This is Chris, my mom’s blueprint!”

Chris has mentored Belinda since she was seven years old.

Superstar.

Belinda was already nauseous before we drove her home from the hospital Monday night. It had just turned dark with all five of us cozied together in the car—Joshua, Caleb, Chris, Belinda and me—celebrating the successful surgery. Several stops and two vomits later, we changed course, focusing instead on just getting her home so she could get her pain meds and sleep.

(Not to dwell on vomiting, but imagine vomiting with hundreds of brand new stitches across your chest.)

When we arrived, Belinda developed an internal bleed on her right side. Turns out it was bleeding fast but we didn’t realize it until Chris and I drained her wounds after arriving home. Belinda collapsed and began vomiting uncontrollably while moving in and out of consciousness.

I propped Belinda on her side to clear her trachea. Joshua called 911. Chris drained the bleed while Caleb helped his Mom breathe and remain conscious as much as possible. We were worried she was going into shock.

We live in the sticks, thirty minutes from the nearest hospital. So getting rescue services is, well, a little iffy. Somehow Joshua pulled out some magic with the 911 operator: two paramedics teams arrived within fifteen minutes.

Belinda’s heart rate was good, even her oxygen. But her blood pressure was dropping precipitously. The EMT team transported Belinda to the Emergency Room at St. Mary’s in record speed given where we live.

We spent the night in the ER while the team prepped Belinda for surgery to repair the bleed. By the next morning she was stable.

Her hemoglobin kept dropping, however, thus the transfusion.

Now for the good news: the preliminary pathology test on six lymph nodes was negative. Which means the twenty weeks of Red Devil and “Taxhell” did their work. While we won’t get the full pathology results until next week, right now, she’s cancer free.

Thank God.

Belinda sends her love and tears and joy. She strong because you’ve given her strength.

Paradox

Many of you you know I have an abiding affection for the Democratic Republic of Congo (DRC). I have been learning from, advocating with, and writing about my dear Congolese family for many years. Congo is a place of deep beauty and tragedy, a people of incredible strength and long suffering. One of the things I love most about my brothers and sisters from the DRC is their keen ability to embrace paradox. They hold suffering in one hand, and joy in the other, and know how to make something beautiful from them both.

There is peace in the paradox of cancer. I have found that behind every worry there is an even bigger wisdom. It’s not an easy lesson, but one well worth embracing. The shadow of death makes the light of life glow brighter. Doubt and faith, suffering and joy, pain and peace, sickness and survival.  “Hard times,” writes Alice Walker, “require furious dancing.” 

Thank you dear ones, for holding this paradox with me as I go into surgery tomorrow, Monday, May 9, at 10 am EST. The Bauman family holds your every prayer, shout or whisper as a gift.

Two surgeons. Six hours of surgery. One pathology report. LOTS of drains and drugs. Eight weeks of healing. Then on to two months of radiation.

Your presence is my peace. 

And please never underestimate your prayers—they are literal strength for the climb in this strange land, my friends. And I could not love you more for each one of them.

Twenty Weeks

20 weeks.

That’s how long it takes to hike the entire Appalachian trail. Or finish the Pacific Crest Trail if you hoof it. Or, if you’re really serious, make it up and over the entire Continental Divide.

20 weeks. 5 pounds of hair. 6 nurses. 3 pastors. 2 phlebotomists. 2 physical therapists. 2 oncologists. 2 patient sons. 1 faithful husband.

And you.

“Final chemo, right?” asked Deb, my super wise oncology nurse as she hung my last infusion bag. “How are you feeling about this?”

By now I knew the drill. Needle in port, injection push of premeds: antihistamine, corticosteroid, and an H2 receptor antagonist, all to help my body accept the next round of Taxol (or “Taxhell” as Stephan calls it). Premeds make me super loopy, but I was determined to not miss the importance of her question.

“Honestly,” I said to Deb, “I just wish it was the end, and not just the end of the beginning, you know?”

She prepped the infusion port just below my collar bone.  “Yeah, I understand,” she smiled. “But, you know, wishing didn’t get you this far.”

Oh my, that struck home.

20 weeks ago, fresh off diagnosis, I remember wishing a lot. I remember thinking that maybe if I wished hard enough, I could bargain with God for a little safety. A little more time. Time enough to see my sons graduate and get married, maybe even meet my grandchildren. More time to grow a little older with my best friend and husband. 20 weeks ago, I wondered if maybe I performed just the right actions in the right order, with the right motives, maybe the unavoidable could be avoided. 

But it wasn’t wishing that helped me put one foot in front of the other. And it won’t be wishing that will get me through 8 hours of surgery on May 9th. Or the months of daily dose radiation after that. And more chemo after that.

The reality of suffering makes realists out of us all. This climb is more than a mountain. I am learning to embrace all the peaks and valleys, the whole mountain range.

In this very weird, but real, world of cancer, God knows I needed to let go of the fragile notion that a kind, old magician would utter some magical words to take it all away.  Faith in the Creator of the Universe, who stitched me together cell by cell, is far more dangerous—come what may, all the way. Faith that the path we walk is not just full of separate little events to get through, but each step contributes to the weight and meaning of the whole journey.

You never really know what faith is until faith is all you really have.

Dear ones, something is shifting in my soul on this upwards climb. My final chemotherapy “Amen!” came with deep gratitude, less for the journey from beginning to end, and more for the journey from fear to faith. Don’t get me wrong. I still wake up shaking some nights thinking about the reality of this disease. There is no faith on this earth that isn’t commingled with fear, and no sting of fear that can’t be diluted by faith in the One who knows every hair on your head.

And mine too, which you can actually count!

God, give me your bigger, broader perspective, right here in the middle of it all … 20 weeks in, too many weeks to go. Faith in your love for a broken body and a broken world. For the suffering of women and children caught in the fear of violence, oppression and poverty caused by war. Faith for those who cannot wish away the reality of their brokenness, but only trust. Faith that we are not just a jumble of eyes and ears, fingers and toes, arms and legs, but a unified body with strength to see the whole way, to change what is to what can be.

May whatever you are wrestling with find you full of faith. Friends, everyday I am grateful for the many ways you walk with me. You are loved on the peaks and in the valleys!

Yes, You Can

Hi Dear Ones,

Good news: fifteen down, five to go.

Chemo, that is.

Thank you for pulling with me every step of the way.

I couldn’t do it with you.

Last week, I spent the day with an in-it-for-the-long-haul friend. When I swung back my door, there she stood, in the fresh snow with a bouquet of flowers. Turns out she personally selected each one and arranged them too.

Tears.

Joy.

She’s weathered the death of her parents and a few close friends. Some of her most precious dreams too. Her friendship is real, tangible, present. Like the flowers she loves. She knows how to breathe courage into shaky hearts.

“Belinda, I just can’t imagine how this all feels.” Her kind eyes darted to my ready box of tissues. “The loss. The longing.”

Cancer has a funny way of making you more honest. Filters get wobblier. Subtle words are harder to retrieve. Maybe it’s the long slog of infusions. The Epsom-salt soaks for slowing the falling-off of fingernails, toenails. The picture of myself taken six months ago that I no longer recognize.

I looked up, dead serious, my eyes holding hers. “Yes, you can.”

So many people are looking for an age-old something. Call it empathy. Call it love. The real-deal kind, not the airy stuff. That real something has been tattered and bruised over time, often misunderstood and even dismissed. That something allows us to understand what we’re feeling. It listens and learns, is gentle but takes risks, and is kind even when it speaks the truth. It allows us to experience joy and sorrow for a friend. It is a gateway, a portal into understanding who we are.

She took my hand. Said she was here for it all. The pain and the joy. The Fear and courage. Death and life. “I love you,” she said. “I’m not going anywhere.”

To love someone, we must connect with something in ourselves that knows, at least in part, what they are feeling. Those are the rules. Sometimes love is a sacrifice for the sake of someone else. It involves calling up your own pain to understand.

This lesson came full circle this weekend in the form of a handmade card from Rwanda, addressed to me in my African name:

Dear Bwiza,

I can feel our Sisters, mothers and daughters, reaching, sharing their hope, their song, their tears, their life and faith with you. May you know the fullness of the love, light and breath they send you…May you feel our presence and our prayers for you with all our love today.

My African sisters taught me how to hold pain and joy for the sake of a friend. They are holding that same space for me now.

Tears.

Joy.

It is a powerful thing to realize we are stronger and more resilient than we think. It’s even more powerful to love others through hard times. "An act of love, a voluntary taking on some of the pain in the world,” said Dorothy Day, “increases the courage and love and hope of all."

Dear ones, may you go into your day, your week, your life knowing you have this gift, ready to use now. The strong and gentle power that turns fear into strength, death into life, despair into hope.

you say it's your birthday?

Today is Belinda’s birthday.

Belinda shares her birthday with Lewis Caroll, Donna Reed and Mozart. We all know she writes like Lewis Caroll and is more beautiful than Donna Reed.

As for Mozart, turns out Belinda and Mozart are the same height. Yep, 5 foot 4. Eyes of blue too. On a good day, when she stands up straight, Mozart looks up to Belinda.

This birthday is a special one, of course. If you are up for pilling on the love, go ahead and text, Facebook, Instagram, or email Belinda today.

Or tomorrow. Or the day after that.

Or just leave a comment below. She reads them all. 😊

Spring Can’t Hide Forever. We’re in the dead of winter here in Michigan. Yesterday, after her 8th chemo infusion—half way through!—Belinda said, “I wish we could go kayaking…”

It’s coming, Mrs. B.. Soon. Promise.

Love Is or Love Ain't

Happy New Year,  Dear Ones!

Speaking of New Years, mine actually began in 2021. 

Late last year, two days before Christmas Eve, we celebrated my final round of Red Devil. Caleb made scallops. Joshua made sesame green beans. Good news: no chomping on nickels, pennies or otherwise.

Anya joined us too. (One day, I’ll tell you more about Anya…for now, let me just say she is a gift of gifts.)

Now for the most amazing gift. 

Ever.

Indulge me…a large box, flat, elaborately wrapped, red bow and all, the way I like it. The room is quiet, focused. I peel back the corner of the package to see… a frame. I rip away the paper. It takes me a minute to recognize what I am seeing….some friends, familiar ones:

A boy. 

A mole. 

A fox. 

A horse. 

And, below them, words—words that take my breath away:

One day you’ll see how hard it all was and how brave you were. — For Belinda, Love Charlie 

On the day I was diagnosed with cancer, Charlie Mackasey, one of my favorite artists, posted an image of his new painting, this one—a boy, a mole, a fox and a horse taking comfort in a rainbow against the dark and stormy clouds. 

You may know Charlie. He’s become quite well-known because of his bestselling illustrated book, The Boy, the Mole, the Fox and the Horse.

Charlie is no stranger to suffering himself. He’s been through it.

Oh, he’s also the imaginary behind the Alpha brand…

When I was diagnosed, Charlie’s painting became a permission slip for me. It knew it was gonna be hard. I wanted to be brave.  

I didn’t expect Charlie to send me a signed copy of his painting.

Yes, you guessed it. When I slid the paper off the picture, I cried a “fine cry,” to borrow from sister Maya Angelou, “with no bottom and no top.” 

Thank you, Charlie, for creating. Thank you, Tricia, for connecting. Thank you, Stephan, for loving.

A few days before Christmas Eve, I invested in a new planner, a diary for those of you who’ve never heard of a “planner.” (If you can hear the word “planner” with a nasal twang, it’ll all make sense.) I am still smiling, wondering what in the world I was thinking.  The standard “lose weight, get fit” goals were not going to work this year. It was that time a friend sent me the famous passage from 1 Corinthians 13. You probably know it well:

If I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to move mountains, but have not love, I am nothing.”

Here’s what I wrote in my new handy dandy planner after trying to put my chemo brain around that verse:

This is hard. 

Be brave. 

Love well. 

It took some courage for Stephan and I to reflect on the shock of 2021 and the uncertainly of 2022 with three more months of chemo looming followed by surgery, then radiation. How does one make exclamations about your future when your present is a question mark?  For too many years we slipped into living a year or two or five out into the future.  Fact is, we can only live, and love, in the present, whether we’re on top of a mountain or lost somewhere in valley.

There’s a funny thing about having cancer. It tends to take the pretense out of the air. People are more real, more honest, more free to share what’s really going on. Joy, yes. Fears too. And pain and sorrow. One day we’ll all look back and see how much courage life takes. Not just brave for brave’s sake, but courage for the sake of something that will outlive all your days: to love well. 

If cancer is teaching me anything, it is this: love requires every cell, every fiber of our being—good, bad, and ugly—to give all. “Love is or love ain’t,” writes novelist Toni Morrison. “Thin love ain’t love at all.” 

Today, I am praying this prayer for you, for me, for us:

Dear God, 

Life is hard. 

Help us to be brave. 

Teach us to love well. 

Amen. 

Chemo Communion

Merry Christmas, Dear Ones. 

I’m hooked up to my chemo infusion as I write. Stephan and I are handing the laptop back and forth. The good news: today is Red Devil #4, the last of my eight-week run. Next up, Taxol, every week, for three months. But that doesn’t start until January 4. 

Today we’re celebrating.

The bad news: Red Devil’s got me by the scruff. Who would have thought eye lashes fall into your eyes, not out? And what’s with nose hairs? When did they become so important?

But losing hair really isn’t so bad compared to the psychological toll. Turns out my body recognizes “Chemo Day” before my brain does. My oncology nurse calls it “anticipatory nausea.” I know—it sounds so wimpy—but the data on post traumatic stress in people dealing with life-threatening illnesses is a real thing. Cancer patients experience stress in their body even before their brain has a chance to catch up. 

Migraines. 

Tears. 

Dark thoughts. 

Nasusea. 

And more nausea.

The worst is the overwhelming feeling of loss and dread. Sneaks up on you. Like a bony tap on the shoulder.

All this drove me to my knees for a few days. So I called my friend Ashlee with an idea. Ashlee co-leads Mars Hill Bible (no, not the infamous one in Seattle). She’s my pastor, which includes talking me off a cliff during the dark days. 😇

My conversation with Ashlee went something like this…

“Ashlee, I have an idea—maybe it’s crazy. I have chemo coming up on Tuesday and I can already feel my body and mind begin to react to what’s coming. I am dreading it—the pain, the nausea, the diabolical thoughts. I don’t want Red Devil to be the only thing running through my veins. What do you think about giving me the Eucharist while they give me chemo?”

Wait a minute, back up: the Eucharist?

Yeah, I get it. The “Eucharist,” or “Communion,” can conjure up a range of feelings and questions. For a lot of people, it’s tradition. For others, the bread and wine symbolize the body and blood of Christ. For some, the Eucharist is more than symbolic: it’s the real presence of God.

Honestly, until cancer, I’ve hovered around the first two.

Stephan says the sacrifice of Jesus is penultimate, while union with God is ultimate. That’s just his way of saying the point of Eucharist is to experience the tangible love of God made possible by the advent of Christmas and the sacrifice of Easter.

I like that. 

Even better, I like Flannery O’Connor’s take.

Flannery was a literary phenomenon who battled life-threatening lupus. She was also a devout Catholic who attended Mass daily, believing that the “body and blood of Christ” were part of what was keeping her alive. One evening, another famous author suggested it would be far more open-minded, and less threatening to others, to think of the Eucharist as a “great, wonderful, powerful symbol.”

Flannery’s response came swiftly: “Well, if it is only a symbol, then to hell with it.” 

Ashlee’s answer came swiftly too when I pitched my idea of communion during chemo: 

“Yes. Yes. Yes! What time do you want me there?”

Ashlee brought a simple wooden cup and bowl, along with her grandfather’s worn book of prayer. In the chemo bay at St. Mary’s hospital, we confessed, we prayed, we took the bread and wine as the chemo cocktail dripped into my veins. 

Then Ashlee stopped, took my hand and said, “Emmanuel.”

Then she said again: “Emmanuel, Belinda. Emmanuel.” 

God with us. 

I am with Flannery. In the reality of loss, suffering and pain there is no symbolic middle ground. Either Jesus is in my veins, tangible, present, right next to Red Devil, or he is not. 

Today, as I take chemo communion again, and welcome the deep peace that confounds all understanding, I pray the tangible presence of God is with you my friends. May you experience the crazy, extravagant, messy love of God in your veins no matter what you’re facing. 

You are a gift. 

God with me.

God with you.

Hair's Gone.

A friend took a risk with me a day or two ago. “What has been the most surprising thing about having cancer?” she asked. Without thinking, which chemo brain all but guarantees, I shot back a rather pensive response: “I am surprised by how heavy hair is.”

I cannot be held fully responsible for what I say or write these days. A large percentage of me is chemical, especially the first 48 hours after chemo. I am, essentially, radioactive. (On this point, Stephan, says, “So what’s new?”)  😳

Just ignore Stephan. I am filled to my gills with heat-seeking chemo drugs detonating my living cells; anti-nausea drugs intercepting vomitus maximus the way Texas ranchers wrestle prodigal pigs in the dirt, and; white cell booster drugs kicking my white blood cells in the proverbial arse so they get on with it! (That is, reproducing).

After Red Devil #2, my hair began to fall out. All my hair. A little Like Charlie Brown’s Christmas tree when the needles dropped in droves. If you haven’t given a thought lately to all the places you have hair follicles, just take a moment and gander. Then ponder. Even my nose hair had enough and just up and left. No words, no scene, no ego-driven confabulation. Not even an apology. Just gone.

Try this one on for size: a Michigan winter without nose hair.

Speaking of follicles, while the amount of hair varies from person to person, the average human head boasts about 100,000 hairs. And when you zoom out, there are roughly about 5 million hairs on your body right now. On average, each of us will lose only 50 to 100 hairs a day. And technically, while even the thickest, longest 50 or 100 strands wont hardly tip the scale, hair is, I’ve come to learn, heavy.  

But you don’t know that until it’s all gone.

Last week I learned the weight of hair not by its presence, but by its absence. With each brush, wash, or even head shake, I collected what had fallen out and piled them on my bathroom sink. Joshua asked me why. At first, I couldn’t answer him. But as the week plodded on, and the pile grew, it dawned on me…

“Ebenezer”… I was making an “Ebenezer.”

No, I’m not talking about Ebenezer Scrooge. Although I’ve had a few grumpy days. Ebenezer is a clumsy, Hebrew word, meaning “remembrance.” For the Hebrews in the Bible, Ebenezer stones were a way of remembering “how far the Lord carried us”. The prophet Samuel famously set up an Ebenezer—a pile of stones—on the eve of battle against their arch enemy, the Philistines. Morale was low among the soldiers; they had already lost twice. Dark thoughts of defeat swirled through the camp. What looked like a pile of stones set amidst a bedraggled, less-than-triumphant scruff of a people, was the Prophet’s way of saying to God and the world:

We’re still here. And the God of the universe seems to be good with that…

My pile of stones is a pile of hair, my claim that I am still here. Hairless, but here. My growing pile of eyelashes and nose hairs. Gone. The fine little fuzz on my arms, legs, and cheeks. Gone. And the “crown of glory” on my head. Gone.

What is left is a pile of hair made holy somehow, a monument, an Ebenezer to how far God has taken me, an offering to the One who created me and willed me to live and give life.

My hair’s gone. But not my protection. Not my identity. Not my hope. Not my life.

This week I shaved off the little that was left. As I stood looking at my “stone of remembrance” on the countertop, I sobbed at the beautiful truth of it all: “Indeed, the very hairs of your head are all numbered, so don’t be afraid; you are worth more…” (Gospel of Luke 12:7).

Today I will drag my hairless body to the chemo infusion bay at St. Mary’s for Red Devil cocktail #3. I’ll display my bald head, unashamed, propped up like a mannequin who slipped her wig. And all the world will behold just how far God has taken me.

Yes, I will remember the weight of my hair. But I take courage in this: God’s doing the math, not me. He’s dialed my number(s), hairs and all. He’s got my back—and bald head too—come what may.

Thank you, dear ones. Your prayers are rolling over me like waves, numerous as the hairs that once crowned my head. I am grateful for every prayer and every hair, yours and mine.

mouthful of nickels

Good news: chemotherapy round two is down; fourteen to go. My hair is falling out so we cut it way back. It is strange how something so new can feel so old so quickly. The paradox of cancer is myriad.

We adore the oncology nurse who administers my four-hour infusion. Her empathy quotient is through the roof. She understands how these lifesaving drugs could kill me if not administered properly. For her, it’s not only real, it’s personal. She is a breast cancer survivor herself. During this week’s “red devil” push, I asked her a question:

Why is my mouth full of nickels?

She knew exactly what I was talking about. Toast, lettuce, bananas, granola, even chicken. Just about everything tastes metallic. Like a handful of change.

I know, gross, right? Let me give you the 5-cent tour…

Chemo drugs attack rapidly growing cells. Obviously, cancer cells are fast-growing. But other cells grow fast too. Like the cells on our tongue associated with taste. Couple this with some seriously wicked cotton-mouth caused by the lovely IV drip anti-nausea drugs, and viola, we’ve got a phenomena medical experts’ call dysgeusia, a persistent, unpleasant sensation of bad taste.

There ya go. Suddenly my metal mouth makes sense. All in bad taste!

So here we are: Thanksgiving. I am extra grateful this year, along with the creativity that goes into preparing for the feast. During tomorrow’s official Day of Thanks, I am anticipating Red Devil’s revenge. My shutters will be drawn and my better bucket nearby. So, today, while the good IV drugs still have a hold, we will celebrate with a fine organic turkey named Otto (who, only last week, was running around his free-range barnyard at our favorite local farm!) I will prep the seasoning rub, following my mom’s recipe to a tee. I will mash the cranberries and puree the squash. But, Caleb and Joshua, not I, will be our chief taste-testers, even as they prep the potatoes and dressing.

There’s safety in numbers, my friends. Diversity of tastebuds is a good thing.

My dear brave souled friends, YOU are #1 on my thank-you list to God, the Creator and Sustainer of all things good about LIFE. May you feel the blessing of those you love. Draw them just a little closer for me, will you? Celebrate the life you bring, and the life others bring to you. Love is, in the end, the only thing of infinite worth.

Oh, and don’t forget to raise a toast to taste!

Better Bucket

So, they say that your body establishes a rhythm during chemotherapy. During chemo, the good people at the hospital make sure they fill your IV bags with the good stuff—potent anti-nausea, antianxiety meds. They make sure you are hydrated, comfortable and peaceful. The effects last for a couple of days. My first day after “red devil” was ok—even my second.

Days three and four were the bucket days.

Three constant companions—headache, drowsiness, nausea.  One minute I am freezing, the next I am sweating. I have a bucket near my bed to help; I grab it on the way to the bathroom.

Two days. 48 hours. One goal: get past the nausea and get back on the trail.

On day four, one friend texts: “How are you?”

I send her a picture of my bucket, a small, plastic garbage can--simple, boring, faithful.

“Seems to me you need a better bucket,” she says. “What is your favorite color right now?”

I answer, “I don’t know,” i answer. “Blue, maybe green.”

“Great, girl. A better bucket is on the way.”

Without saying it, she reminds me every moment is a gift of God.

People who hold space filled with beauty and--forgive me--barf are holy friends.

Thank you, dear ones.

“Everything is a gift. The degree to which we are awake to this truth is a measure of our gratefulness, and gratefulness is a measure of our aliveness.”
— David Steindl-Rast, Benedictine Monk

Thanking God for Red Devil

Yesterday was a win, friends. First chemotherapy, fifteen to go. First round anyway. That may seem daunting, but my cancer team said, “The first chemo treatment is more like two or three combined…”

“Well okay then,” I said, “I’ll just have to bring the A game to this one.”

One of the reasons the A game is required is because of an interesting drug called Adriamycin, which is also known as Doxorubicin. But that’s for scientists. The real name is “Red Devil.” It’s the strongest chemo drug on the market and wears this unusual moniker because of its distinctive hue and fearsome toxicity.

My oncology nurse, Deb, was an absolute pro-player and a 100% brave soul.  In full hazmat gear (It took a while for me to let that one sink in too), she held up three large syringes containing red, Kool-Aid-like liquid.

Yep, you guessed it: Red Devil.

Here’s the warning label:

⚠WARNING⚠: If this medication touches your skin, immediately and completely wash the affected skin with soap and water. If this medication gets in your eye, open the eyelids and flush with plenty of water for 15 minutes. Seek immediate medical attention. Caregivers should take precautions (e.g., wear gloves) to prevent contact with the patient's body fluid for at least 5 days after treatment. Consult your pharmacist.

Yikes.

After she described the dangers, Deb manually “pushed” the red cocktail into my chemo port which accesses to the main artery of my heart. Took her 30 minutes.

And yet…as formidable as Red Devil seems, this morning I woke up, opened my eyes and thanked God for every minute of the day I was about to live. Stephan had already left for the office so I dragged myself to the kitchen for my daily IV (a cup of coffee). Turns out Stephan had already set up the coffee maker with a note:

I guess I’m winning.

And yet, I don’t want to be too hard on my opponent. Red Devil is, after all, saving my life. So, today I thanked God for Red Devil, and for the strength from all of you to help me kick cancer’s butt. Thank you for being so awesome.

PS: Just before posting this, Stephan stopped me, looking deep in to my eyes. Then he squinted and said, “Wow, your eyes are really red!”