Holding Bread

The book Sleeping with Bread opens with this story:

“During the bombing raids of World War II, thousands of children were orphaned and left to starve. The fortunate ones were rescued and placed in refugee camps, where they received food and good care. But many of these children who had lost so much could not sleep at night. They feared waking up to find themselves once again homeless and without food. Nothing seemed to reassure them. Finally, someone hit on the idea to give each child a piece of bread to hold at bedtime. Holding this bread, these children could finally sleep in peace. All through the night, the bread reminded them, “Today, I ate, and will eat again tomorrow.””

I spent a little time this week researching this story and it seems to be something seen repeatedly in situations with trauma survivors. I sometimes watch the series, “Hoarders,” and it seems to me that most of those featured had some sort of past trauma that prompted the hoarding practice. When their world is spiraling around them, they grabbed onto some holding bread and cannot let it go.

I’m sitting here in my office amid boxes of photos. They have all been digitized, a completed project from last year. Now I need to choose some to keep and plan to shred the rest. These photos are not my holding bread. I don’t need them to hold onto my memories. That I’m surrounded by boxes is pure procrastination.

So what is my holding bread?

Bread and the imagery of it make my brain come to life. Bread of Life. Bread from Heaven. Bread of the World. Let us Break Bread Together. Communion – at church and at family dinner tables. In my church we celebrate communion to conclude each worship service. For me, it is the “meat” of the service.

The most memorable communion I ever experienced was in a tiny supply closet – turned private space in a mental institution. I had taken my father there for the first of many hospitalizations. My youngest was weeks old and nursing so I wore her in a sling through the whole ordeal. We were each other’s lifelines. My pastor and friend came to us. He asked the nurses where we could sit for a moment. It was me with a baby, him, a folding table, two folding chairs, a packet of saltine crackers and a little plastic container of peel-the-foil-off-lid-imitation grape juice. He blessed it. We shared the elements. I felt God in that closet, in that institution that seemed farther from Heaven than anyplace on Earth. Holding Bread.

My dad’s struggles with mental health never waned. They changed slightly when he developed Parkinson’s and his physical frailty finally caught pace with his mental frailty. I spent the last several years of our years together visiting him every Sunday afternoon in a nursing home. I would bring the bulletin from church and read through it with him, reading the scriptures and recapping, to the best of my recollection, the message that day, this time from a new pastor and friend. I taught Sunday School with this pastor, so I also recreated the Sunday School lesson with Dad. I ended every visit by grabbing his hands tight and saying the Lord’s Prayer with him. At the end, I would add, “Daily bread, Dad. I have it and you have it and it’ll be there tomorrow.”

I had never heard the story about Holding Bread then.

After Dad died, but before cancer, life was chaotic. I was fighting multiples fires from many angles all at once. I clearly remember driving home from work on a county highway and suddenly experiencing vertigo. I turned off on a side road and sat there, reeling. What was happening? Suddenly I had the physical feeling of floating on my back in a sun-warmed pool, one of my favorite feelings. I heard God tell me to relax and float. I don’t know how long I sat there, but eventually the vertigo left and I finished my commute home. Holding Bread.

For me, holding bread can be as simple as things that remind me of moments of peace and joy – warm memories, thoughts of people I love, a glowing candle, kneading dough, playing piano, walking in fresh air, my dog. But Holding Bread is much more than that. Daily Bread. I have it and you have it and it’ll be there tomorrow.

Lead Apron

I had a t-shirt quilt made with some of my metastatic breast cancer (MBC) shirts. It is gorgeous.

Today’s devotional centered on Exodus 17:1-7. God is always with us. It is difficult to remember that when times are hard and easier to be thankful when things are going well. I believe with my whole being that God is with me always. I woke up in a foul mood, likely because I went to bed in a foul mood. This is not the life I had planned. Having MBC is like always wearing a lead apron – the kind they put on at a dental office for X-rays. That weight is always there, lurking. Always a burden. Never lifted. Ever. Not for a moment. Never forgotten, even though it seems like many people in my life forget I am carrying it. (You look so good. You are so resilient. )

I am focused on learning self-compassion. How does that fit with a mood like this? I can acknowledge how I feel. I can talk to God. I can write. I can bake. I can sew. I can play the piano. I can draw. I can light a candle, I can snuggle with my dog. I can allow myself to be angry and sad and resentful while also reminding myself that, amidst the awfulness, there are moments of joy and love and Madi.

Mindfulness

Today is one day after treatment. I had a metastatic cancer support group zoom mid-morning and then spent some time in my Llama Lounge – reading, reflecting and writing. Several loved ones checked in to see how I am, via face time, video chat and text. It is so good to feel loved. Dave made me one of my favorites – black bean burgers. He is an amazing cook and makes food that is appetizing and healthy for me. The false spring continues so Madi and I took a walk today. On our walks I don’t wear any listening devices. I just want to be present in the moment with Madi and notice everything around us. She is a great teacher in this. She loves to go shoulder-deep in culverts. Sometimes she pauses her movement to just sniff the air. She frequently looks back to check in on me. Today is windy so I enjoyed watching her ears flap in the breeze. Being present in the moment is so refreshing and healing. It stops the racing mind of anxiety and a list of shoulds. It grounds me to all that IS instead of worrying about what WAS and what WILL BE.

When we reach our long gravel lane, I turn her loose to run home. Today she saw Dave on a tractor in the yard so there was extra speed in her strides.

When my slower steps reach home, she knows I will refresh the bucket of water at the hydrant. She prefers this to the filtered water inside the house!

Today is Ash Wednesday. I am re-reading “Wild Hope” by Gayle Boss that my pastor recommended. During Advent I enjoyed “All Creation Waits,” another book by the same author. I highly recommend both. I try to build inner strength through the practice of mindfulness. I think of mindfulness as radical acceptance – being aware of what IS and being open to that instead of letting my mind race to what SHOULD or COULD be. Madi has no idea she is my mindfulness guru.

113

Dave and I left home around 10 am. I wrapped up in a quilt from a 4-H House friend. We enjoyed some oldies on the journey. At one point, I owned these on vinyl or 8-track. Ha!

A nurse accessed my port and drew blood for labs. The chemo pod nurse had to check with my oncologist since my counts are so low, but I was okay to receive treatment today.

20 minutes left at this point

Hooked up to the pump
My knight in shining armor

My next trip down is on March 10. I will have a bone scan, chest/ab/pelvic CT, see my oncologist, get labs, and receive treatment 114. It will be a very long day with, hopefully, unremarkable results.

Marking Time

TODAY was a “false spring” February day in Central Illinois. Temperatures reached the mid-sixties and the sun reached into my soul. Madi and I took a long walk on our county road. We heard children playing in Elliott – happy shrieks and laughter and an occasional “not it.” We saw a group of children trying to walk a big dog who preferred to drag the small youngster holding on the end of the leash. More shrieks and laughter at that escapade. We saw a family playing at the park. We passed a chicken coop that is so difficult for Madi to ignore. We heard birds chirping happily, enjoying a day that doesn’t require all their energy to merely survive.

YESTERDAY I heard one of my favorite stories in church, when a group of people wanted to get their paralyzed friend in front of Jesus to be healed. They could not get through the crowd, so they cut a hole in the roof and lowered their friend down in front of Jesus. I am obviously paraphrasing. You can read it at Matthew 9:1-8. I have mentioned before that healing is a difficult concept for me to hear in church now. Metastatic breast cancer has no cure yet. There is no healing the MBC I face. I have come to see my healing as collecting moments of peace and joy and hope with the recognition that they outnumber the bad moments. I also think of my friends and family who keep cutting a hole in the roof for me to be placed in front of Jesus. I am so lucky.

TOMORROW I will have treatment #113. I absolutely do not want to go. Every three weeks. Time passing by with a solemn, slow drum beat. I think of all the things I wanted to do in the last treatment cycle, but did not. I think of how I will feel the next few days. I think of all the things I would rather do than go to St Louis and get an infusion.

But TODAY there was sunshine and happy sounds and fresh air and Madi. I thank God for TODAY.

Cultivating my Corner

Today at a small group gathering at church, someone wiser than me likened parents dealing with adult children who do not get along to God dealing with all of us in the world who do not get along. How profound.

I have been very open that I have been in talk therapy for years, since before my diagnosis of incurable cancer. My therapist is as much a part of my medical team as the team of professionals who care for me at Barnes. I have survived trauma. Most of it I only discuss in therapy because telling my full story requires telling the stories of other people and I will not do that. In the weeks after learning I had stage four cancer, with an average survival of 2.5 years, it became crystal clear to me that I could decide with whom to spend my precious remaining time. That does not mean that I shun people. Just like my church friend said today, God loves us all and sometimes I just need to play nice. Instead, I feel less guilt in saying yes to some things and no to others.

I used to play the organ at churches of many denominations, but had a “niche” in a certain group that has some huge differences in beliefs than me. After being horrified twice when I had guests come with me and those guests were vilified during the service, I vowed to never do it again. Music is my connection to God and when I am playing, I need that connection to not be compromised by hate and hurt. I am sensitive to those who preach about healing without clarifying just what they think healing is. In a time after my diagnosis, when I was church shopping, I sat through a sermon where the speaker bragged about how many people he knew who had been healed by God because they believed and asked God to heal them. He even declared his wife’s infertility was cured by them praying. I sat in shock, looking around that sanctuary, wondering who else was sitting there with cancer or infertility and thinking they just didn’t believe enough or hadn’t asked God in the right way. Did this mean I was not worthy of healing? I have terminal cancer yet I am utterly certain that God loves me. I do not believe healing equals my cancer being cured. So many parts of my existence have been “healed” despite the relentlessness of metastatic breast cancer.

My faith makes my life profoundly better. Why do so many persist in wounding people in the name of religion? There is a song I love called, “Truth Be Told” by Matthew West. Part of the lyrics include:

“There’s a sign on the door, says, “come as you are,” but I doubt it, ’cause if we lived like that was true, every Sunday mornin’ pew would be crowded. But didn’t You say church should look more like hospital? A safe place for the sick, the sinner and the scarred, and the prodigals, like me.”

I am distressed by what is happening in our world. I hold on to hope by cultivating my little corner of the world. That often involves playing the piano or writing or baking. I am home alone nights because Dave works nights. I usually light candles. This week I decorated my year-round tree for Valentine’s Day. There is horrific injustice in our country, but I can add light to the corner of my dining room. I can send a card or two to people. I can bake some bread and cookies to share. I can send a meme to a friend. I can go outside in the dark with Madi and look at the moon and the stars. I can enjoy her sleeping at my feet under my desk.

Tomorrow I will send more emails to my elected officials. Tonight, I am going to marvel in the precious present.

112

Winter drive

Dave and I left the farm at 10:00 this morning for my 2:00 appointment at Siteman Cancer Center in St Louis. Today was treatment #112. We are thankful the interstates are clear from the weekend’s winter storm.

Port access

The nurse who accessed my port and drew my labs has been a nurse at Barnes for 2 years but worked there the previous 8 years in food service as she earned her education. I so appreciate health care professionals who choose to work in oncology. It cannot be easy.

Waiting to be called back to the chemo pod

There are two days left of this month and one more medical appointment. I don’t have to return to St Louis until Feb 17 and I’m thankful for the reprieve. I have a temporary crown on my molar and digestive issues have been much lighter the last week. I also got to see all three of our adult children in the last week, which makes my heart happy. It’s still daylight and we are already on the way home. I expect to get home to Madi Moo around 8:00 pm. Two of our kids split dog-sitting duties today so I know she does not miss us at all. 

My No Plan Day that Wasn’t

My January is full of medical appointments and I thrive on quiet days at home on the farm. I am also someone who loves her old school paper planner so I purposefully scheduled one No Plan Day each week this month. The first one was utterly amazing. The second one was yesterday and let’s say there were complications. It started well with a trip to town with Madi to run the car through the car wash because it was finally above freezing here. The sun was shining for a change. I spent time in my Llama Lounge (formerly my office when I was a working human). It used to be my mom’s hair salon so there are more windows than walls. I write, draw, practice calligraphy, check emails, work on my photo projects, and enjoy life there. I started proofing a batch of homemade cinnamon rolls.

I was enjoying a late lunch (which we call lupper in our family) when I heard a crack and felt INTENSE pain in a lower molar that I now know is Tooth 18. I cannot describe the intensity of the pain in words. Just picture me screaming. I have birthed 3 children sans epidural. I have stage 4 cancer. I had an emergency surgical procedure in a doctor’s office with only local shots because there was no time to rush me to the hospital due to the bleeding. I am well known for my pain tolerance. Heck, I had stage four cancer likely for many months and just dismissed the pain in my liver and bones. But this tooth pain was bad. I couldn’t sit still. I called my dental office and then called the on-call dentist’s cell phone as instructed per voicemail. Crickets. I was desperate.

Then I called the Calvary. I’ve known an endodontist in Champaign since kindergarten and he is married to one of my besties. Dave rushed me down to his office right as it closed at 5. Turns out I cracked that molar in half diagonally. Think of slicing a hunk off at a diagonal, clear to the bone, through the middle, exposing the nerve. It was a dangling flap of pain. Because I take a biophosphate for my bone mets, I cannot have tooth extractions. (Cancer – the gift that keeps on giving.) Since the simplest solution was off the table, I had an emergency root canal yesterday evening with his wife (my bestie) called in from home to assist. Dave sat in the corner of the room. It was like a fun evening out with friends except for the root canal part. Once I was finally numbed, I didn’t care about anything else. I left hours later with a lovely root canal, a temporary filling and a weird sorta half tooth in the back of my mouth that hopefully my dentist can crown. I left with an amazing heart of gratefulness for my amazing tribe. I still cannot imagine what I would have done without the Calvary last night.

If you are in my area and need an endodontist, I will tell you who to see. He is known as the best anyway, but happens to also be an amazing person.

I am mentally wiped out today and going to try for another No Plan Day. I did finish rolling out and baking those cinnamon rolls while I waited for a callback yesterday. I had to keep moving due to the pain. I may make some local deliveries today with Madi.

Just this week my therapist said we all need 3 friends in our lives we can count on for absolutely anything, can express absolutely anything to, and will just always be there. I have several but to Dave, MJ and KRP – I simply couldn’t do life without you.

License Renewal

Dave and I left the farm at 3:00 Tuesday in the midst of a digestive system revolt. It was a tough day. The brain MRI results were good, though. There are no new tumors and the faint trace of a new one that appeared in October has disappeared. So the daily chemo pills I take are definitely crossing the blood brain barrier and doing their job. As I puked on the side of I-70 on the way home I thought about how this is better than a new brain tumor. I go back to St Louis in 2 weeks for chemo 112. In March I will have my neck-down scans. For now, I enjoy the renewal of my license to live.