What if FINE is a lie? Can telling the truth be a lifesaver? I wish. But I have not met many people who are equipped to handle truth. Most people crumple into a big wad of awkwardness when looking into the face of truth.
FINE can be a brick wall between me and help, between me and the people who love me. But that brick wall can be a safety barrier to protect my heart from seeing the awkwardness in someone’s face who asks me how I am as a social informality and I think they want the truth. I think of Jack Nicholson”s character in the 1992 movie, “A Few Good Men.” “You can’t handle the truth.”
This is one of the reasons I blog. Those who really want to know show me by following my blog. And the people who do that do not have to ask me how I’m doing; they already know.
Small talk has its place. But maybe we should try harder with people who matter.
The results of my echocardiogram were not what we wanted. I have been referred to a cardio oncologist. Treatment for metastatic breast cancer seems to be a balancing act to find the appropriate level of poison to kill the cancer but not quite kill the patient. At least we now have a better explanation of the findings on the CT scan 3 weeks ago, but not the explanation for which we hoped. I’m home in bed listening to thunder and rain – the very best sleep environment for me.
Dave, Madi and I left the farm at 4:30 this morning. Madi and I slept during most of the drive. It is rainy and stormy at home but sunny here in St Louis. Things are moving very slowly today at Siteman Cancer Center. My chemo appointment was at 8:30 but I didn’t get my bag of poison connected until 11:00. After this I will get an echocardiogram and then I’m out of here. I get echocardiograms regularly because the drugs I am on for cancer treatment are known to cause heart damage
I have many skin issues due to cancer treatment. I have a prescription ointment to keep the hand foot syndrome controlled. I have a prescription cream to treat a rash I get on my arms during the second week of the treatment cycle. My nails are ridged and chalky. They don’t break – they just disintegrate. Last week something new popped up – a rosacea-type rash on my face I didn’t think of myself as a vain person until my entire face turned red and bumpy. Good times. My medical team and I are doing what we can to get some relief.
Dave and Madi are hanging out in Forrest Park while I’m at my appointments. Since my day is running a little long, she already wore herself out and needed another nap!
My long medical day is over and we are driving home. They had cushion in the schedule and every stop was able to work me in when I arrived. Sweet! With a couple stops along the way we should arrive home around 9 pm.
If you’ve followed this blog for a while you know the goal is for my scans to be unremarkable. That was not the outcome of the day but it is something we are going to watch for now and repeat neck-down scans in 3 months instead of 6 months and monitor symptoms. I’m not happy about it but I’m also too seasoned at this to be devastated. Today ended with treatment 114.
In 3 weeks I have treatment 115 plus an echocardiogram because my cancer treatment is known to cause heart damage. They monitor my heart closely.
Dave has learned to catch zzzs whenever and wherever he can on these marathon days. 🩷
My paternal grandmother became a widow unexpectedly early in life. In her grief she painted every wall in her house gray. I remember her talking about that years later as advice to not make big decisions when all you see is gray in your world.
Tomorrow we will leave around 6 am to make the drive to St Louis. I have 6 appointments scheduled for the day, including neck-down scans to see if the cancer is still controlled and ending with treatment 114. We will likely return home around 11 pm. I don’t want to go but I know I must. Dave and I will make the best of the day. We always do.
This evening I spent time making art in my Llama Lounge. I just realized I only used grays in everything. Yet, today, I was able to see all 3 of my adult kids plus have tea with one of my cousins. Madi and I took a walk on a windy country road and I waited patiently while she checked out every culvert. Tomorrow will pass. I will handle whatever the scans tell us.
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 is something seen repeatedly in situations with trauma survivors. I sometimes watch the series, “Hoarders,” and it seems to me that most of those featured have some sort of past trauma that prompted the hoarding practice. When their world is spiraling around them, they grab 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 multiple 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.
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.
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.
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.
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.
I am not in control. 