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The first thing my partner’s father asked after we told him I had cancer was, “Is Jo going to fight this?” It was a serious, intense question, one that we hadn’t even begun to think about. It was less than a week after the colonoscopy that showed a five centimeter mass at the top of my descending colon near my splenic flexure. It was less than a day after I received the biopsy results that showed that the mass was adenocarcinoma, moderately differentiated. For twenty-four hours, I had been focused on telling everyone that after months of symptoms with no clear cause, the answer was colon cancer. Fighting hadn’t crossed my mind. 

My partner looked at me sideways before he answered his dad, waiting for my nod. I shrugged. “Yeah, she’s going to fight this,” he said into the phone. “Good,” his dad said, and led the conversation to questions about treatment and staging, what resources we had available, who we should talk to, what the timeline was. This was before the chest CT, the consult with surgical oncology, the dizzying flurry of information and instructions. This was still a month away from the six-hour surgery that would leave me with many incisions and arms that still don’t bend quite like they did before. We didn’t know anything about what the “fight” would look like, but we signed up for it all the same.  Read more

The other day, after school pick-up, my daughter and I swung by the church I serve to quickly pick up something. Naturally, my daughter had to use the restroom. While washing our hands, she asked with an earnest curiosity, “Does God brush his teeth here?” I asked her, “What made you ask that?” She responded, “Well, this is God’s house, so this is his bathroom – he must brush his teeth here.”

My biggest fear is being separated from my children by death. To miss moments like that one, or the feel of her hot breath on my neck as she naps on my shoulder. To no longer feel the weight of my son as he barrels at me as fast as he can with joy and excitement when I come home from work. The feared absence strikes without warning: in moments of utter bliss as I watch them sleep or moments of the unforgettable mundane as we prepare for school in the morning.

There is something (to borrow from Glennon Doyle Melton) “brutiful” about watching your worst fear played out in print. Brutal and beautiful: this is Kate Bowler’s book Everything Happens for a Reason: And Other Lies I’ve Loved. Bowler captures the reader with honesty, humor, and raw emotion as she dives into her story: how to live life in the midst of dying; how to love others when you’re about to say goodbye.

None of us are strangers to loss, but Bowler’s vulnerability brings the intimacy of fear and love and longing right into our very lives. I tend to anxiously avoid facing my fears of “what if” the very worst happens. This book brought me face to face with those fears, while at the same time I was comforted and held in the structure of Bowler’s story. A difficult but important read, I discovered that as a priest and as a mother, my life needed this book. Read more

“Taste and see that the LORD is good; blessed is the one who takes refuge in him.” –Psalm 34:8

Image courtesy of the author

Image courtesy of the author

I didn’t know what else to do, so I baked a cake.

Thunder rolled in as I hung up the phone. The results of my father’s bone scan had come back: Cancer. Multiple spots. Source unknown. Tests to come. Treatment plans to be devised.

The storm pounded at the windows and I was scared, so I pulled Sam from his crib. We sat on the couch and snuggled with all the lights turned off, save the light of the television. I clung to Sam and to the weatherman.

I am still a child, frightened of storms. I am still a child, needing my parents’ assurances that the storm will pass over, that I am safe. Tonight, though, my parents can guarantee neither safety nor sunshine. They are just as scared as I am.

Someday thunder will scare Sam, even if tonight he remains oblivious to the storm outside. Someday Sam will grow wide-eyed with each lightning flash and will look to me to keep him safe. I want to be a good mother, able to shield my children from the rain. I want to be a good daughter, able to keep my parents invincible. I want to pretend that I don’t need to be mothered, or fathered, or sheltered. I want to be less frightened by the storm.

I didn’t know what else to do, so I baked a cake.

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P365x52-12: Control, Option, Command

P365x52-12: Control, Option, Command

Asking for secretarial assistance or office support seemed a little ridiculous in my first parish. We had 15 to 20 in worship most weeks. I am as computer savvy as you’d expect someone who’s been to grad school to be; I could produce a bulletin and manage our terrible equipment with a greater ease than it would take to train the type of candidate we could afford or attract. But some of the leadership wanted someone in the office at regular hours; they wanted someone to answer the phone. They wanted, I think, to be a church that could afford a secretary.

We went through several unsuccessful candidates. The job market was not what it is now, and no one wanted to work five to ten hours a week for ten bucks an hour. Then, the need for someone consistent became more pressing: I was going on maternity leave, and someone, for sure, needed to produce the bulletins.

The stint of that someone didn’t last long past my return. I burnt out on supervising people who weren’t particularly well-suited to the role, and on justifying the expense to the finance committee.

Then, we got some news. Debi, who worked in the nursery on Sundays and ran an in-home daycare during the week, had received a breast cancer diagnosis. As she underwent treatment, she could no longer be around the germy hordes she loved so dearly. Unable to work, she and her family were in financial trouble.

As a church, we made meals. We debated if we could make some sort of financial contribution. But this was a congregation that could barely afford my pastoral salary and the monthly payment on the boiler loan, so any money we gave would have been largely symbolic.

We needed somebody in the office, though, so we asked – would you be interested in this job instead?

Debi had never done office work before. She’d finished high school, taken a few classes toward a med-tech certificate, and knew how to use her personal AOL account. She was not the best speller; I edited everything we produced closely. I had to teach her how to cut and paste in Word. But she was game.

Debi, brought into the office by illness and financial devastation, nonetheless brought new life and new possibility to the church, and to me. We were a good option for her, too. So part-time, so low-stake that she could reschedule shifts around treatments and their fallout. I’ve worked with some highly competent church office admins in the years prior and since– but I loved working with Debi. I loved Debi.

She struck that ineffable pastoral balance with the congregation: she was warm and caring, but she didn’t put up with any of their crap, on the occasions when they felt inclined to dish it out. She pushed me gently when I forgot to get her information she needed in a timely fashion, but she was a wonderful – and powerful – ally.

I’ve wanted to write for years about what it meant to me to work with her, and now that I have this spot, and this deadline, I am struggling to find the words. We were neither likely friends nor likely colleagues, but that ultimately didn’t matter much. I was in my mid-twenties and working on hitting as many milestones of adulthood as possible in a short time. She was over fifty, had married late, had an eighth grader. We were both terrified she would die before her daughter reached adulthood. She shared updates on her treatment and prognosis; I learned about the HER2+ gene, which made her cancer more aggressive. We talked politics; she and I would be voting for Obama in 2008, because (well, I pretty much always vote one party) we lived in hope of healthcare reform, because her husband’s insurance was so lousy and kept refusing to pay for things.

I learned about how bankruptcy is sometimes your only viable option. I learned that some hospitals are subpar, even in nice enough areas.

Sharing her illness and treatment with me, allowing me into her life, helped me to become a much better pastor than I might otherwise have been. I had studied public policy – hell, I’ve studied health care policy – but her experiences, seeing these public crises through the lens of her life and the complexity her social location added to her ability to navigate those crises, both reminded me of my own powerlessness and showed me the possibilities for agency. Sometimes we sat with the reality of a denied treatment or a horrible, persistent, side effect; sometimes we researched other options.

Debi’s cancer was a critical part of how and why we came to really know each other, but it was not the only thing. My daughter was new in those days, and I was anxious about everything: balancing work and care for her; wanting to be attentive, but not overly-so. Debi was such a good mom – she and her thirteen year old had such a good relationship—and she had provided such wonderful care for so many other people’s kids that I trusted her advice. Pragmatic and gracious, she offered counsel without condescension.

I asked for a new appointment just before my daughter’s second birthday. I felt terrible, abandoning these people, but after three and a half years in a dying church, I was cooked. Debi affirmed my choice: you need to do the right thing for your family.

We were not as close after I left. The maintenance of proper boundaries dictated as much, plus we weren’t in the same office for hours each week. I learned Debi had died not quite two years later, somewhat unexpectedly, through Facebook: another complication of her cancer mishandled by that terrible hospital claimed her life. The new pastor invited me back for the funeral, and I was privileged to speak.

Since leaving that church, I’ve always worked on bigger staffs. I’ve supervised folks; I’ve drafted job descriptions and discussed evaluative processes. I’ve fired people. And I believe in the importance of best practices and the expectation of excellence in church work. But one of the [2,700] reasons I’m in ministry and not corporate life is because of the regularly realized opportunities we have to share our lives in unexpected ways with unexpected people. I love ministry because we get to have relationships that are rich and layered. Even when they lead to loss, to grief, to the increased awareness of injustices in our healthcare system: these are the relationships that make the life of the church so critically important.

Debi and I were never a crack team when it came to getting the newsletter out on time, but our work together was holy.

 

An opening in the CloudsJust before Christmas, I preached at the funeral of a beloved church and community member named Wendy. She struggled with cancer for many, many years—far more years than I knew her. We became especially close in the last two years of her life: years which were also marked with my mom’s cancer diagnosis and death. Wendy, my mom, and I all bonded over cancer, death, and the promises of God that we shared.

After such a long battle, Wendy’s death still felt sudden. It was hard to know where to begin with the sermon, although it felt like it should have been easy. After all, not long before she died, she sent me a four page document telling me what to share and what not to say.

Wendy wanted to be sure that I shared how much her family meant to her: her dad and her mom, as well as her husband and children. She loved each of them fiercely and uniquely. Wendy loved people, including more friends than she could name. Of course, I didn’t need her email to know that. Anyone who met Wendy knew that. In the years I knew her, it was obvious that she put others first consistently. Even as she did everything in her power to fight the cancer that had invaded her body, she continually gave of herself: in her classroom, at church, to her family and friends. Jesus said, “You shall love your neighbor as yourself.” The only difference with Wendy may have been that she loved her neighbor more than herself.

That love for others grew out of love she received: from her family and friends, but also from God. Wendy told me not to say that she was a strong person. Some of us disagreed with that over the years. However, she wrote, “God is who got me through all the years with his strength and by surrounding me with such wonderful people that made me want to stay for as long as I could.” Wendy was strong because her strength came from God, from her faith.

Jesus also said, “You shall love the Lord your God with all your heart, and with all your soul, and with all your mind, and with all your strength.” Wendy loved God and was not afraid to share her faith. She was involved in teaching confirmation for many years. Those were years in which she talked openly about her faith, about what she believed, about her willingness to keep learning and growing, trusting that God was part of her life’s journey. For me, Wendy was part of that great cloud of witnesses referred to in the book of Hebrews. She ran the race of this life with perseverance, looking to Jesus for her strength. And now, she’s still part of that great cloud of witnesses: those who have gone before us, who point us to God.

A few months after her father died, Wendy shared with me an experience she had one evening while driving. She was on the phone but had to pull over because a cloud stopped her in her tracks. It looked just like the profile image of her dad. I told her that I believe the boundary between this life and the next is thin. Throughout the Bible, Jesus says that the kingdom of God is near. And the kingdom of God includes God’s children, in this life or in the next. Wendy saw an image of her dad literally in the clouds but also as part of the cloud of witnesses who reminded her that life is not over even when life is over.

I told Wendy of an experience of mine that she asked me to share at her funeral. My life, too, has been deeply affected by the horrible reality of cancer. My dad died from cancer when I was not quite ten years old. There is much of my life he hasn’t been here for, including the birth of my children, and that brings deep sadness. My oldest child, now six, takes after my dad by having sensitive skin. My dad had been a mail carrier, and the winter was particularly rough on his skin, so he used A&D cream to help. Shortly after my daughter’s birth, when we used this ointment on her, I would hold her close and smell her and think, “Daddy.”  When I snuggled with her six-month-old self, and when she “kissed” me (which was more like slobbers), I felt like my dad knew her and that he sent hugs and kisses for me from heaven.

It’s hard to articulate this. I believe my child is a gift from God, that God knit her together, and that God knows her and loves her. I believe that God knows my dad and loves him, and I believed that before I had children. I couldn’t help but feel like my dad knew my daughter and sent me a message of love through her. Both of them belong to God and are forever connected by that reality. Wendy told me that my story gave her comfort and strength. She knew she belonged to God and would forever be connected to those she loves, even those we haven’t yet dreamed of. The distance between life and death is thin in the kingdom of God.

In life and death, we belong to God. Wendy knew that. Now, she is free of pain and cancer and the burdens of this life as she rests in God’s presence. Her funeral was a day to rejoice in the promises of God: that she has been granted everlasting life. Even so, as Ecclesiastes states, there is a time for everything, including times of tears. There were certainly tears that day and in the days that followed. But none of us walk the journey of grief alone. Jesus lived and died and rose again so that we might live and die and rise with him. Yet God’s promises aren’t just for the dead, but for the living. God’s promises are for us, too. God will be with us, just as God was with Wendy, on this journey through life, surrounding us with people who will share all the bad and good times with us. This is the great cloud of witnesses, who strengthen us to run the races set before us, the cloud of witnesses who invite us to live as Wendy did, loving God and loving others. In life and in death, in joy and in grief, we belong to God. We are God’s beloved children always. I hope that I, like Wendy, will never forget that.

Mother & DaughterThe first month was the hardest.  The time spent wondering—wondering what the future would hold, the next hour, the next day, and hopefully even the next year.  The time spent waiting—waiting to hear what the next medical professional would have to say.  I was exhausted and emotional and trying to hold everything together.

And then she came home and we started a new journey, shaped by new realities—a new future that didn’t look like the one we had planned to embark upon.

It sounds very much like a birth story, doesn’t it?  It sounds like I welcomed a precious baby girl into my life.  I have, twice.  But not in this story.

This story is about learning to mother my mother, all while trying to mother my children and pastor a congregation.  This story is about learning to mother my mother, all while still being her daughter.

My life has been shaped by cancer.  My dad died of cancer when I was nine.  He died six months after his diagnosis.  I don’t remember many details from those six months, but I do know that they worked their way into my soul.  And I remember the many, many, moments of dealing with the realities of grief, loss, death—and even resurrection.  These are the moments that still take place as I continually face life without my dad’s physical presence.

So when one of the two surgeons came out to talk with me in the waiting room this past March, I was calm and self-assured as I asked questions and waited for answers.  And yet, I heard the word “cancer” and the words “much more extensive than we anticipated”.    The inner nine year old me fell apart; the thirty-five year old me held it together.  The last time I heard a parent had cancer resulted in my world collapsing.  I wasn’t ready to face that again.  As a daughter, I cried.  As a daughter, I questioned God.  As a daughter, I struggled.

As a pastor, I continued to plan midweek Lenten services.  As a pastor, I continued to shape Holy Week and Easter worship services.  As a pastor, I prepared to celebrate death and resurrection.

And I did things that needed to be done.  I visited my mom nearly daily for the weeks of hospitalizations and the weeks of rehab.  I stopped by her apartment regularly for months after.  I did her laundry and dishes for four months.  I am going on six months of grocery shopping.  I am her transportation to doctor’s appointments, CT scans, and chemo.  I am the one who drops everything to take her to the ER when something is not right.  I am the one who listens along with her to what the doctor has to say about her prognosis.  I ask questions and write down answers.  I log into her medical records to make sure I understand.

Sometimes I feel like now I have to be the mother.  I was relieved when my sister who lives across the country came to visit for two weeks.  For two weeks, I didn’t have to be my mom’s mother.   Mostly, though, it’s new territory we are navigating.  As she gets stronger and looks to an end date for chemo with a very good prognosis, I have to mother her less and less.  I will still care for her, in many of the ways in which she cared for me over the years.  I know the day will come when I’ll have to mother her some more, but I’ll be ready because she taught me to be a mother.

And because I’m a pastor who journeyed a very personal Lenten journey this past Lent, God opened me up to experience a very Easter message.  When my mom dies, be it from this cancer—though that doesn’t look likely—or somewhere down the road, I will be okay.  Resurrection is real; that will get me through.

In the meantime though, I’ll keep learning—how to be…a mother, a daughter, and a pastor.

 

A daughter for 36 years, a pastor in the Evangelical Lutheran Church in America for 10 years, a mother for 5, Jodi continues to learn how to be all three (at once) thanks to the lovely people of Shepherd of the Cross Lutheran Church in Muscatine, Iowa and two precious little girls (Alexa, 5 and Mackenzie, 2).

Photo by Colin Cook, https://www.flickr.com/photos/colin_cook/9384667831/, October 14, 2013, Used by Permission of the Photographer, All Rights Reserved.  For more of Colin’s photos, check out his Flikr Page at: https://www.flickr.com/photos/colin_cook/.

Bankstown Hospital Emergency RoomThe first copy of the soundtrack I owned was a cassette tape that contained most of the major songs from the musical. I wore it out. I handed it to the MRI technician every time I had to have a scan because the powerful beat of its music was almost as loud as that of the MRI machine. I played it in my walkman as I lay in my hospital bed on the bad days of my chemotherapy treatments – too tired and nauseous to do anything else. But then I graduated to the fully symphonic recording of Les Miserables. Three compact discs – the whole entire musical. Not a single word or note missing. It was magical. Partly because I loved the musical and partly because that CD set had been a gift from the cast and crew of the Broadway theater. As a part of my “wish” granted by the Make-A-Wish foundation (an organization that grants wishes to children with life threatening illnesses), I got to see Les Miserables, live, on stage in New York. And I got to go backstage, where I met the cast and crew and was given a number of production souvenirs, including the symphonic recording.

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The doctor pushed the curtain aside and left to document the conversation in the file, leaving Shon and I to absorb the jagged pill he had just forced us to swallow. “There’s something on the left side of your brain.” How were we supposed to respond to that? No questions came to mind. There were no particular concerns I could voice. I really did not even have any feelings at all, save utter shock. In that moment of revelation I could only stare at my husband and try to imagine the big dark mass lurking underneath his
thick brown hair and perfectly smooth scalp. It had to be a joke.

As I gradually regained my senses, all I could think of was the Epiphany service I was supposed to be leading in a couple of hours. Not long before it had seemed vitally important for me to be there early to set up. Now my mind was trying to figure out how to cancel the whole thing. I picked up the emergency room wall phone and shared the devastating news with Shon’s parents and then mine. One more time, I picked up the phone and called our volunteer choir director, Mickie, and told her the news. Mickie’s response was to walk straight over to the ER—she lives across the street from the hospital—and give us both hugs and assurances. She asked where my notes for the Epiphany service were. I told her. “Don’t worry about a thing, we’ll be fine.” And they were fine, the service went on, not as planned, but as needed, with lots of prayer.

Early on I learned that in order for me to keep my sanity, my job, and my family I had to communicate constantly with all parties. This was before we had a cell phone, so my fingers quickly callused from dialing the ga-zillion numbers required to make a call with a calling card through the hospital network. I kept our Clerk of Session and the Worship Committee Chair up-to-date, and notified the Executive Presbyter. They lined up pulpit supply for the two Sundays following Shon’s surgery.

During the first two years after Shon’s diagnosis, there were relatively few interruptions to my work schedule. He had no follow-up treatments, only MRIs every few months. The biggest lifestyle change involved the seizures. Shon was having about 16 seizures a month that affected every muscle on the right side of his body.

It took us a year and two doctors to finally reduce the severity and the number to around 3 per month. The seizures wore him out and often made him fall. They also made it impossible for him to drive. The Session and congregation allowed me to be flexible with my office schedule so I could take him to appointments, do much of my work from home and be with him on the days when he was especially weak.

The Session supported and encouraged my weekly meetings with a local Clergy Support Group as part of my Continuing Education allowance. All of the other pastors in this small group had several more years of ministry experience than I. I found it immensely helpful not only to vent frustrations and sorrows in their empathizing presence, but also to try out ideas and seek the advice of their collective wisdom. At this same time, I began seeing a counselor who helped and still helps me explore the deeper psychological and spiritual consequences of my experiences.

I look back on this time before the recurrence and think how easy things were then. Certainly they were not easy. But everything is relative; when the tumor came back in 2005, it was bigger, more aggressive, and we had a toddler. Life got exponentially more complicated! Read more