We are finally getting a measurable amount of snow here at our Central Illinois farm. Indie, Madi and I had to get out to enjoy it. It is breathtaking to watch a starry, snowy sky at night. I am able to hear so much on snowy nights – paws crunching, owls hooting, coyotes howling, a barn door creaking, barn cats scurrying to take refuge from the dogs, snow falling on my hood, the hum of the yard light, a lone vehicle traveling on the state highway almost a mile away. There is so much peace in the unknowing dark. There is so much peace in unknowing.

One of my daily journals is a Prayer Journal. I used to include prayers in my regular journal but would forget some, or omit that part for whatever reason. I credit Beth Moore’s “Align: 31 Days of Prayer” for really kickstarting this habit. I am learning to turn to God first and speak with God just as I would speak to my best friend. It hasn’t been easy.

I’m using The Everyday Prayer Map Journal for Women currently. I stumbled upon this at Sam’s Club and it really works for me. I am a writer, so I knew I needed something to guide my thoughts through a pen.

Each day I am guided to reflect on the day and what I need from God. Inside the front cover, I keep an ongoing list of prayer concerns. If someone has asked me for prayers, I make sure to record it here as read through the list again every day. I’ve also added a section to note when I feel there has been a direct answer.

I am one who journals and have been most of my life. I am also a planner and have been since my freshman year of college when an academic advisor taught me how to plan life in chunks that I could handle. I just completed my monthly planner and wrote 2 overreaching goals in large print at the top of the page.

Why am I fighting so hard to stay alive?

What would I do if I had a whole week alone at home with no one watching?

The year 2023 was rotten for my family. Sure, you can look for joy and all that stuff, but it was really hard and horrific and a host of other adjectives. But I am still fighting hard to stay alive. Why? Ah, that’s the kicker. I survived and I am still fighting because that family of mine, every single one of them, is worth the fight. I’m tired of bad things happening and I’m tired of writing lists of things I should do when I find the time. So I vow to focus on why I am still here, fighting Stage IV breast cancer. And I need to figure out just what it is that I really want to do with my time, because that clock is ticking with every treatment and scan. Maybe you should consider those questions for your own life.

Dave and I left home before 3:00 am today to drive to St Louis. I had an echocardiogram to begin my day here. One of my treatment drugs, Herceptin, comes with a high risk for heart problems so my oncology team monitors my heart closely. Everything looks normal today. Score one for the home team. I’m in the chemo pod hooked up to a saline drip, waiting for pharmacy to mix up my bags of Herceptin and Perjeta. Today is my 76th treatment.

The group, 3 Little Birds 4 Life, delivered a Christmas gift bag to everyone in the pod this morning. This is an organization whose mission is to make life a little easier for cancer patients.

It was a lovely surprise and brightened my spirits a great deal. It is a heavy dose of reality to spend the holidays in the chemo pod.

Today is treatment #75. It feels like a big deal. I suppose that being alive for 75 IS the prize.

I met Dave at work and we drove to St Louis together. We love spending time together but wish all our travels were to someplace fun.

My current read is The Heart that Grew Three Sizes by Matt Rawle. I’m in a bit of a funk so I hope this will help pull me up into the light again.

The Gibson Area Music Foundation presented its annual concert of “Festival of Lessons and Carols” this afternoon. Many selections from Handel’s Messiah are part of the program. The Foundation funds many music camp scholarships each year for students in our community. I was truly blessed to be part of this biennial production. I have participated in this off and on over the years since I was in high school. I was even crazy enough to be a soloist way back when.

Today was the second time since my cancer diagnosis. I recall wondering in December 2021 if I would have the opportunity to sing with this group again. Here I am again, in 2023, wishing like crazy that I’m around to sing with these people in 2 years. This feeling, the wishing and fear, is prevalent for people with Metastatic Breast Cancer during the holiday season.

2023 has not been kind to the people I love most. This morning was no exception. But this afternoon I was able to do something I love so much with my 88 year-old mom in the audience. I loved being able to catch her eyes and see her smile. This is the day the Lord had made – this day with all its ups and downs, sickness and pain, anger and chaos. So no matter what each day brings, I will rejoice and find moments of joy.

Three years ago tonight was the Friday after Thanksgiving. I woke up to use the restroom. I remember standing in front of the mirror to wash my hands. The next thing I remember was horrid pain. I had lost consciousness and fallen, hitting the tub on the way down. My husband works nights so he was not home. My youngest child, a senior in high school, was asleep with her door shut. My oldest child, already done with college, was home for the holiday weekend but slept in the basement. My salvation was my middle child, home from college on break. He was awake in the living room watching television and heard me call for him. I do not recall how he got me up from the floor. He is extremely strong so I’m guessing he picked me up. I do remember him making a noise when he touched the back of my head, as there was a lot of blood. He got me in the car and took me to the local hospital emergency room.

I wonder what that 19 year-old thought when he saw me on the floor. Or when his hand felt the blood. Or carrying me to the car. Or sitting alone in the ER waiting room hoping his dad would arrive soon.

They performed X-rays and a CT scan of my head. I had no broken bones, but the doctor came in and said there was a little spot over my right ear. I knew right then that the breast cancer that was already in my bones, adrenal gland and liver was now also in my brain. I felt my whole being falling toward an abyss and I couldn’t stop it.

Dave was still at work and I didn’t have a way to contact him, I called my mom so she could go home to be with my children.

I cannot imagine the horror of hearing your daughter crying on the phone about a brain tumor. I imagine her next thought was wanting to get to her grandchildren as fast as possible to be with them and help them.

They began the arrangements to transfer me to Barnes Jewish Hospital. It was daylight before all the paperwork was done and Dave arrived at the ER about the same time. He went home to tell our children that they had found a brain tumor and then followed the ambulance to St Louis.

Imagine driving home from work to learn that your wife was in the ER. I’m sure he was as devastated as me to learn it had spread to my brain, but he had to stay strong for me. He had to tell our children that it had spread to my brain. I wonder what he thought as he raced to St Louis alone in the car.

A brain MRI at Barnes showed several brain tumors. I met with a neurologist and radiologist and agreed to a gamma knife procedure to treat them. I was considered a fall risk so I had an alarm on my hospital bed and was not allowed to stand or walk without someone assisting me. Dave convinced the nursing staff to allow him to be my assistant. He and I walked the halls of Barnes for hours. I was determined to stay active.

My three children had to resume their responsibilities while I was still hours away in the hospital. One traveled back to his apartment and job. One had to go back to college. One had to return to her senior year of high school. The world was already in upheaval due to Covid. Nothing felt normal. Classes were online. They could not get within 6 feet of their friends for a reassuring hug since they were being mindful of Covid restrictions to keep me from getting it. Now their mom, already fighting stage IV breast cancer, was in the hospital with brain tumors.

I was released from the hospital on December 1, but traveled back down on December 4 for my first gamma knife procedure.

Bad Math

One in eight women will be diagnosed with breast cancer. About 6% of these patients (including me) are de novo MBC, meaning the cancer is already stage IV when it is first discovered. About 30% of breast cancer is HER2 positive, my type. About 50% of all people with HER2 positive breast cancer will have it spread to the brain. I love math, but not when using it to calculate my utterly bad luck.

Why Brain Mets are Bad

Treating brain metastases can be challenging because of the blood-brain barrier. The blood-brain barrier is network of blood vessels and tissue that helps keep harmful substances from reaching the brain. But it also keeps out many medicines used to treat cancer. The treatment I am on that is controlling my “neck- down” cancer really well does not cross the blood-brain barrier. My team at Barnes does not want to risk changing my treatment since it is working well “neck-down.” So we have chosen to use gamma knife when more brain tumors are found and carefully screen every three months.

A Whole New World

Having cancer spread to my brain is a whole new beast. One very small brain tumor in the wrong place can end my life, or end my ability to see or speak or think. Every headache, every time I momentarily struggle to come up with a word, every time I experience a major change of mood, every time I stumble starts a painful guessing game – is it a new tumor?

Here We Are

The prognosis for people with HER2 positive breast cancer that spreads to the brain is 3 years. At the moment I am writing this, it has been 3 years. Barring any new symptoms, my next brain MRI is scheduled in January. Living scan to scan is no way to live. But here we are. Please continue to hold my family in your prayers. It can make us all weary. I wish my children did not have to navigate high school, college, and young adult life under these circumstances. My family and I are fighting cancer together.

I am officially stable cancer-wise. My next scans are in January.

Check out my ride for the day! I’ve been going to Barnes on my own for 5 months or so due to scheduling and family issues. Today the stars aligned and my most favorite person is taking me in our truck.

We are listening to 90’s country but I’m repping my girl, T Swift.

Thanks for all the encouraging messages and the prayers. I love you all so so much.