Daily Bread

My love of baking yeast breads began in 4-H. I still have my 40-year-old project book that explains the important role that each ingredient plays in the finished product. I always loved the science of yeast breads and the need to be patient in each step. Standing in front of the kitchen window kneading the dough gives me time to think and pause in an otherwise busy day. To me it feels like a living being of sort as it responds to the kneading and eventually becomes the right consistency.

I still use my 4-H project book.

I’ve been remembering how my dad and I would say the Lord’s Prayer at the end of each visit to the nursing home. It began when I taught a Sunday School class about the Lord’s Prayer and then discussed it with Dad that afternoon. Bread is a symbol for everything we need for preservation of life. When we ask for our “daily bread” we are asking for a very large, encompassing gift – that we get the job we interviewed for, that we get rain for the crops, that we have shelter from the storm. We tend to forget that we are asking for the necessities, not the luxuries. I would hold Dad’s hands and we would pray and then I would say, “Daily bread, Dad. We have everything we need.” I thought I was helping him to see we all had enough; that he didn’t have to be anxious and afraid.

Now I see that I never really understood that concept myself. All those times I reassured him we had all we needed, I was worried about my career, financial issues, my kids, my marriage, and about feeling like I had no control over my own life.

Here I sit with Stage IV cancer and I finally see that I have absolutely no control over my life and never have and am not supposed to. My career issues are meaningless now. My financial issues are not gone but certainly don’t keep me awake at night. The problems my kids have faced in the years since my dad died have been a thousand times worse than the problems they had when I was reassuring Dad we had all we needed. But I have learned they need to face their own problems so they can live independent of me – not without me, necessarily, but rather they need to be able to function as adults. (And they are all doing that as they navigate college and early adult life.) My marriage is the best thing going for me in life and I have the best helpmate and partner in life. I couldn’t get through this cancer journey without his unwavering support. I am blessed with an abundance of Daily Bread.

Are you up there smiling at me, Dad? I finally learned what I was trying to teach you.

My dad playing Bingo while my mom’s dog, Ginger, naps on the table

Huh?

The cancer continues to be controlled in my body. There is nothing new and nothing that has grown. The tumor on my adrenal gland has shrunk significantly. I am staying on the same course of treatment (and had that today). Today is a good day.

The bone scan shows that I have broken 4 ribs since my last scan (in February) and they are healing nicely. Since I did not have a memorable accident, this is probably due to cancer weakening my bones —- sadly not uncommon for patients with bone metastasis but my first experience. It also explains a lot of my pain and discomfort – and why it has been a bit hard to breathe when I walk. The Nurse Practitioner messaged me as we drove home to say they will X-ray it in three weeks when I have my next treatment to follow up. She added that it is good I have a high threshold for pain. I agree.

This is the day the Lord has made. Choose to live in it.

Picture Day

It may seem hard to believe, but I love the days I am at Siteman Cancer Center. It means we are actively treating instead of waiting and wondering if it is working. I will have lots of scans today; so, so many pictures of my beleaguered body!

First, I report to Nuclear Medicine where my port will be accessed and I will receive the injection for my bone density scan. I am amused that the technician wears lead gloves and removes the syringe from a lead case – then injects it into me. 😂 That starts the clock on a 90 minutes wait before they can begin the scan.

Second, while that clock ticks, I will report to Radiology to get my CT scan which also includes another dye injected in my port.

Third, I go to Cardiology to get an echocardiogram with another injectable contrast dye in my port. They monitor my heart carefully because the drugs that are keeping my cancer controlled are known to damage the heart.

Fourth, I will return to Nuclear medicine for my bone scan. They will leave my port accessed but covered securely to prevent infection.

Dave and I are spending the night in St. Louis tonight because I will get my scan results tomorrow from my oncologist and then get treatment. He will drive home and then go to work in this heat all night long. He is the real hero in this battle.Since my brain MRI was clear last month, I would sure like the same news for my neck down. Whatever the results, we will keep on going. I am receiving the best care at Barnes/Wash U.

Since I’ve been so down lately, it’s time to shake it up and share with you what I will be wearing all day today. Laughing is a lot more fun than crying.

Outside Looking In

I’ve spent most of my life on the outside looking in. To be honest, I like it out here most of the time; however, it also causes periodic times of profound loneliness. Metastatic breast cancer adds less time between the bouts of loneliness.

I was an awkward child who spent her time with animals on the farm rather than play dates. Preschool didn’t exist “back in the day.” Attending Sunday School every week was my social outing with peers. My only sibling is eight years older, so we loved each other but certainly didn’t spend time together.

My best friends were my cousins and I was most certainly blessed in that area. I have 21 cousins, most of whom lived within 20 miles of my childhood home. I am the youngest in both sides so everyone took care of me. Until junior high I spent the majority of my time with my cousins, especially with the 3 girls just older than me. There are so many photos of the four of us girls piled up together! We always spent Sunday afternoons at my maternal grandmother’s house and it was the highlight of my week. But there was heartache every Sunday evening when the moms said it was time to go and that meant the other three would see each other at school the next day and I wouldn’t see them until next week (I lived in a different school district). I can still feel that physical heart ache as I write this.

In junior high my grandmother died and there were fractures in the adult relationships. Gatherings stopped. My three amigos still got to spend their time together at school. I became the outsider. (To be fair, I probably belonged there. Your cousins accept your awkwardness and quirks; your peers not so much. ) Losing the closeness of that group is a hurt still felt today.

I have a profound friendship with Dave and have always been most comfortable around him. My cancer diagnosis brought us even closer together. He was with me when I received the diagnosis and has been with me for every single oncology appointment and chemo treatment. However, cancer also causes us to spend less and less time together. He changed jobs so that he works nights. This means he can go to medical appointments with me without taking a vacation day. There aren’t enough vacation days in the world for MBC! I was the main breadwinner and now I’m disabled so he works long hours to keep the family afloat. I visit with him briefly each morning when he gets home from work, and try to be here to visit with him an hour or two before he returns to work that night. The rest of my day is usually spent with my dog, Indie. (I’ve grown insanely close to my dog because she is my only companion most days. ) If I go somewhere for fun, I go alone. I come home at night to Indie and no one else. Our sleep schedules are not in sync so even on his days off, we don’t have much awake time together.

I feel alone now because no one else understands how I feel inside. I have scans again tomorrow. There is nothing I can do today that will change the results so logic tells me there is no point in feeling anxious. My brain is not interested in logic so my anxiety is over the roof. It is all I can think about right now. But I cannot share that with anyone because they will tell me to “think positive” or tell me not to worry. And that will just make me scream inside.

I had a deep sense of loneliness in a church group this week as we discussed a book authored by a woman dying of cancer. There were so many things being said in discussion that were so wrong. Just wrong. There were so many things I needed to say. Things I was screaming inside myself but I couldn’t share with the group. I quit the group and couldn’t bring myself to go back to church today. Which is why I’m sitting here alone on a Sunday morning, when I’m usually happily immersed in conversation and worship with my church friends.

I look at life so differently than most. My faith keeps me going and I mainly practice that within my music. That also includes reading lyrics as poetry. Joni Mitchell is a profound lyricist. She explains how I feel best in this:

Sometimes it is okay to give in

Many people use the imagery of fighting with cancer. Keep fighting. Fight like a girl. You are such a fighter. I’m generally okay with that imagery although I’ve learned that good fighters also know to choose their battles. Some battles are worth the fight while others are worth giving up. I find myself in a time of giving up a lot. Im struggling with it, even though my head tells me it is alright.

An alternate title for this blog could be “the old gray mare ain’t what she used to be.” July 24 will be my three year cancerversary. I had a 25 percent chance of making it that long. Here I am. But I am not anything like the person I was before that awful day in the doctor’s office. I miss her.

The old me was walking and jogging five days a week. She could work long hours. She could paint her deck and clean her house. She could pick up a laundry basket without a thought. She could go upstairs in her house without stopping to rest. She loved to ride on the back of a motorcycle with her husband and they spent a lot of beautiful evenings riding the county roads in our area. She could help her elderly mother around the house and run errands for her. She didn’t think about her death many times a day. She didn’t have hundreds of medical appointments each year. She had long, thick, fine hair and loved putting it up in a ponytail after work. She had thick eyebrows and long eye lashes that didn’t need mascara. She wasn’t in menopause (that came the moment of my first chemo treatment). She didn’t need a nap to get through the day. She loved to walk and would go on hikes with her kids. She wasn’t in pain all the time and certainly never needed opioids just to simply make it through a day. She had long range goals and pictured herself at events with her adult children. She didn’t have neuropathy from chemo so she could feel her fingertips and play the piano at the top of her game. She hadn’t experienced 2 years of constant steroid prescriptions that caused a huge weight gain and puffy cancer-like face. She didn’t know what it felt like to have a port installed as a permanent fixture to make it easier to get medicines. Her fingernails and toenails weren’t crumbly like chalk from chemo. She didn’t have thousands of medical expenses to pay every damn year. She wasn’t disabled and was prepared to fight any battle. She just assumed she would grow old with her husband.

I am disabled from cancer and it is time to stop fighting that fact and accept it. I overdo on good days and then it takes many more days to finally feel rested again. I’m suddenly living in a body that feels 30 years older than it is. I am giving up and trying hard to accept the new me even though I hate her.

Let me know how I can help you.

I made my cancer diagnosis public about a week after the initial diagnosis. Not only did I need support, but I knew my family needed our community to rally around them. I am continually amazed at the outpouring of love that you give us. Knowing that thousands of people were praying for me lifted my spirits in those especially dark days and still makes me feel stronger when the sadness hits on certain dark nights.

Once I learned that my breast density made all those annual mammograms I had received worthless I became determined to empower women to know their breast density and demand the screenings they need to find breast cancer in early stages, when it is treatable. I fervently hope that going public with my story will help prevent someone else from a breast cancer diagnosis when it is already stage IV and spread too many places to survive. I share quite a bit with you, including personal details about my physical and mental health. I do it because I never had the chance to learn that people can be diagnosed with metastatic breast cancer even after dutifully getting annual mammograms. Oh how I wish I had known more back then…

I was never a person who asked for help often. (My friend, Sara, just spit out her coffee when she read that.) I am learning that the acts of giving and receiving are both vital to our humanity. Giving my time and talents to others was engrained in me as a child. Now I am learning that it is equally challenging to ask for and accept the service of others because I don’t want to seem weak and needy. My family is often asked how people can help me. I am going to share some things that are very helpful to us.

  • Nothing is better than the act of prayer. I believe in the power of prayer and can tell when you are all bombarding God with a particular request for me. I know small children who include me in their bedtime prayers. You all humble me with your prayer perseverance.
  • I am a huge fan of snail mail. I love opening our post office box to see a bright splash of an envelope. Knowing you took the time to sign and mail me good wishes brings a smile to my day. I have every card I have received since my diagnosis and I often go through the box on those dark, lonely nights when cancer is too much for my heart to handle.
  • I love opening up my phone in the chemo pod to read your texts and other online messaging. It makes me feel like I’m not so far away.
  • I enjoy people coming to visit me on days I feel good, especially when the weather is nice and we can sit on my oasis. Please understand when I say, “Yes, if I feel good.” That means I cannot always make plans in advance and/or may cancel plans at the last minute. Some days I do pretty well and other days cancer decides to kick my butt. You have to be able to tolerate cats on the oasis because when the barn cats see a lap, they must sit in it. Please understand when I set limits on the duration of your visit. Cancer fatigue can hit hard after 3 years of treatment.
  • Dave works nights so our meal schedule is weird. Frozen meals from Pioletti’s Tasting Room is a terrific local option we love. Everything they make is delicious and we can prepare it according to our weird eating schedule. We have a family dinner every Sunday evening for the immediate family. That would be a great time to have a freezer or refrigerator meal to throw in the oven or a dessert to serve. We are generally okay with food since Dave has always done the majority of the cooking. (Choose your life partners wisely!)
  • All my cancer care happens at Barnes Hospital/Washington University/Siteman Cancer Center in downtown St. Louis, a 3.5 hour drive from the farm. We purchased a gas-friendly car after my diagnosis to try to cut down on gas expenses, but always appreciate help in that area. At a minimum we make that trip every three weeks.
  • For extra fuzzy care, I love plants and flowers and coffee. In fact, I am going to be using a coffee gift card from a church friend in a little bit. Iced caramel coffee is love in a cup.

Aloha

My church is hosting a series of faith/hope conversations to reflect on Mary Oliver’s question, “Tell me, what is it you plan to do with your one wild and precious life?” We are using “What We Wish Were True” by Tallu Schuyler Quinn to lead our conversations. If you have not yet read this collection of essays, I highly recommend it. I entered this series with some trepidation. Metastatic breast cancer gives me a different view of life than most others. You see, that news being delivered to me in the doctor’s office that summer day changed everything. It thrust me into the world of other people with a terminal illness – and we just think differently than the rest of you. There is no more battle for who is in control of my life; I didn’t have “terminal cancer” on my life bingo card. There is no battle for what takes priority in my life. I am very clear to anyone I meet that my husband and my kids come first. Always. You cannot risk putting things off until tomorrow when you may not have tomorrow.

Decisions and scheduling become easier. When I consider doing something I think of Deana Carter. If you aren’t a 90s country music fan, that means, “Did I shave my legs for this?” Put in more eloquent terms (not something I am prone to do) it means, ” Is this worth what I have to give up to do this?”

So I ask you —-Is this worth what you have to give up to do it? That isn’t something only for me and people facing similar problems. That question is crucial to deciding what you plan to do with your one wild and precious life.

I do believe God allows naps and snack time in that plan, so I was binging One Chicago and Peanut M&Ms last night when sleep was elusive. A character explains that aloha means, “to consciously manifest life joyously in the present.” I had to stop and replay the scene repeatedly. How can I be so cheerful in the face of my illness and the pain and the side effects of treatment? It is really quite easy. Today I am here. This is the day the Lord made and I will rejoice and be glad in it. Today you are here, too. Aloha.

Hand drawn aloha lettering. Hello in Hawaiian. Ink illustration. Modern brush calligraphy. Isolated on white background.

Taking a Break

When life becomes overwhelming I often think of the circus act where the performer is keeping so many plates spinning on sticks. I’m spinning too many plates right now and am taking a break from this blog.

I will be blogging for My Density Matters in the near future. Check out this organization at http://www.mydensitymatters.org.

They were founded by Leslie Ferris Yergler who, like me, was diagnosed with breast cancer despite regular mammograms. Leslie and I and millions of other women have dense breast tissue which makes finding breast cancer using a mammogram similar to looking for a particular snowflake in a blizzard. My Density Matters is working to ensure that Leslie’s story and my story will not keep happening.

I cannot change my story —- but I can change the story for other women.

A Virus, But Not THE Virus

Since my cancer diagnosis I have not had any other illnesses. I am supposed to wear a mask in public places to keep from getting sick. I have also avoided many places, often simply because I’m dealing with cancer side effects. This week broke that string as I have a horrible respiratory virus – but not Covid. I’m glad the Covid test was negative. I have received the vaccine and booster for Covid. I slept through the New Years Eve festivities. This isn’t the way I wished to ring in the new year, but I know I will whip this soon and am looking forward to a brand new year of life.

Rethinking Traditions

It has been almost 2 months since I blogged. I had one round of radiation on the new tumor in my left humorous and my level of pain in that shoulder has reduced significantly. I am continuing on the same treatment and will have scans again in February.

Holidays can be a way to mark time. We think of holidays past, how we celebrated, who we were with and how we felt. Feelings of nostalgia seem to sit on a precipice between wistful and despair. Sometimes our memories are not so warm and fuzzy, and sometimes the people in our memories are only in our memories now through death or severed relationships. The passage of time can be especially painful for many people. I am no exception, especially because I have metastatic breast cancer, a terminal disease. I cannot help but wonder if I will be here next Christmas. I have worked hard this year to make this Christmas one of joy and peace. I want my kids to feel and see and hear my love for them through our celebrations.

2002 – And aren’t they just the sweetest little ones?

I found a photo of my kids and my parents from 2002. When I see it, I am taken back to that day and remember the lovely chaos of Christmas morning with kids who are 5, 19 months, and 3 months. Everyone is smiling, even my dad. A few weeks after this photo, my dad’s illness took a huge turn south and he had to be hospitalized and began a long, sad struggle that only ended upon his death almost 14 years later. That struggle took me away physically and emotionally from my family way too much. It is one of my biggest regrets in life. I never found the right balance between honoring my father and living my own life with my husband and children.

The next photo in the Christmas box was from 2016. Dave and I are with our kids and my mom at a relative’s home. I had one child in high school and one in middle school and one in college. . It was our first Christmas without my dad. The smiles are evident and everyone is leaning in together. I remember that night. It felt like new beginning. My dad was finally not suffering. I wasn’t going to leave my husband and children the next day (Christmas Day) to visit my dad in the nursing home so he wasn’t alone. None of my kids were facing college decisions, part time job woes, or relationship issues. I thought we were finally on the path to peace.

Then there is the photo from last year on Christmas Eve, 2020. It was my second Christmas since my diagnosis. It was the year the pandemic shut down life as we knew it. I was in the midst of home isolation due to Covid, since there was no vaccine and my body could not be taxed with both cancer-fighting and COVID. Dave and I, along with our children and my mom are in our living room. We had dinner and watched old home movies. It was a nice evening – but definitely strained. There was so much uncertainty and chaos in the world and our lives. I had been in Barnes Jewish Hospital in St Louis a month before, after a fall at home. They found that the cancer had spread to my brain, which caused my fall. I had gamma knife on 5 brain lesions in early December and had fluid drained from my right lung the week of Christmas. The discovery that the cancer had spread to my brain significantly lowered my survival probability. My poor children were facing a new pandemic and some really awful news about me. We all wondered what the new year would bring.

Just a few days after that photo it became apparent that 2021 was not going to be easy. My oldest son dealt with starting a new job in a new city during a pandemic. My younger son was isolated in college with only remote learning. My daughter was hospitalized for weeks. They found 6 more brain lesions in March and I had gamma knife treatment a second time. We experienced a “1000 year flood” in August that destroyed half of my mom’s house and I became “project manager” of getting her house back in order. We are not yet done, all these months later. It became apparent that I could not continue working due to my cancer and my company hired someone younger, with less experience, wanted me to train him, and paid him more than me. All this made me reexamine holiday traditions as December rolled around. What would happen if I cooked absolutely nothing for the holidays? What if I didn’t make cookies or candies? What if I wasn’t involved in church music for a holiday service? What if some of the decorations stayed in storage? What if some gatherings didn’t happen? What did my family need to have a memorable Christmas?

The result of this relook at traditions has resulted in the calmest, happiest holiday season I have ever experienced as an adult. And I have stage 4 cancer!

My oldest son put up some of the decorations; much stayed in boxes. I am not physically capable of cleaning my house so I hire that done by someone who cleans better than I ever have and is the nicest person to have around. I have not baked a single cookie or made any candy. I am not playing or singing in any holiday worship services or musical productions. I did not send any cards. I cut my gift list down to the bare minimum. On Christmas Eve, every single thing eaten in this house will be store-made. And yet…

Tomorrow we will all go to church, wearing masks. This will be the first time we will all be together in a worship service since my dad’s funeral. It is the only thing I wanted for Christmas. We will come home to food prepared by someone else, board games, and singing at the piano. There is no stress. There is no anxiety. I think this just might be the best Christmas ever – despite all traditions being tossed aside.

I have no idea what 2022 will bring to my family. But I know that God will be with us all the time. I also know that my family will continue to make memories that last, even if they are breaking tradition.