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.
I receive brain MRIs every 3 months and neck-down scans every 4 months. This month is when they coincide with each other. Tomorrow (10/17) I have a brain MRI. Next Monday (10/23) I have a full body bone scan and a chest/ab/pelvic CT. The following day (10/24) I have a heart MRI and treatment #73.
It is a lot for my mind and body to handle.
I wish I didn’t have metastatic breast cancer. I really with it had not spread to my brain. I’m tired and scared but I know I’m not alone. God is with me on my journey, holding my hand.
I’m asking all my Prayer Warriors to pray for me to get through all these appointments and to remember I am not alone.
It is nearly impossible to miss that October is Breast Cancer Awareness Month. There are numerous awareness days and months. Marketing campaigns seem to love to jump on idea of pink products and vague promises of donating to some kind of breast cancer charity. For someone like me who loves pink, adding pink items to my life is second nature. Did you know that Metastatic Breast Cancer has its own ribbon?
The MBC ribbon is green, teal and pink. The green represents triumph of spring over winter and thus symbolizes renewal, hope and immorality. The teal symbolizes healing and spirituality. The pink identifies the origin of the metastasis as breast cancer. It is harder to find products with the MBC ribbon on it. Everyone is aware of pink ribbon breast cancer, but not metastatic breast cancer – the only kind that kills and is killing 115 people every single day. I had not heard of MBC when I was diagnosed with it in July 2019. I found a lump and when they scheduled a biopsy, I had resigned myself to a diagnosis of breast cancer, the “little b” kind of breast cancer – early stage. My husband and I had talked about the possibilities of surgery and treatment and fighting it like a girl and battling it for a period of time and then moving on. When I was told it was Stage IV and had already spread to my bones, liver and adrenal gland and could not be cured, I felt like I had fallen into an abyss. Suddenly there was no talk of surgery and no talk of beating it.
I like the idea of people sporting pink ribbons on items they use or wear. But if you are able to donate money to make a difference, please direct it towards a charity that truly supports people with breast cancer or knowledge about it or research to cure metastatic breast cancer. There are many worth charities. I have three that I want to highlight.
The first is My Density Matters, a non-profit organization on a mission to empower women to know their breast density and take control of their breast cancer screening. I am an ambassador for the group and we created Heidi’s Hope Boxes to raise awareness and funds. Here is a link to learn more about Heidi’s Hope Box and to purchase one for yourself or to give to a friend:
The second is Metavivor, dedicated specifically to the fight of people living with Metastatic Breast Cancer. Metavivor is volunteer led by people with MBC. They offer support for those living with MBC and bring awareness. Their most important mission is to provide critical funds for researching metastatic breast cancer. They want to turn MBC from a terminal diagnosis to a chronic, manageable disease with a decent quality of life. They are currently the only group solely dedicated to the research of Metastatic Stage IV Breast Cancer. I participated in the Chicagoland #LightUpMBC Fun Run on October 1. I have a team fundraising page where you can still donate.
The third group is the Hoopeston Breast Cancer Support Group. It meets in Hoopeston, IL every 3rd Thursday. They offer support to past and present breast cancer survivors. They offer financial support for Hoopeston-area people with breast cancer. They also offer amazing emotional support. One of the members made key chains that explain breast self exams. Please let me know if you would like one. Donations can be mailed to the group in care of Pat Foster, 202 N 2700 E Road, Wellington, IL 60973-6048.
I want to leave you with a photo of me from this week as I celebrated the 21st birthday of my youngest child. This child was only 16 when I was diagnosed, the summer before their junior year in high school. I have never asked God to cure my cancer. I have asked for some healing in other areas of my life and God has done some marvelous healing in my life since my diagnosis. I begged God to allow me to see all my kids turn 21 and God provided.
I will spend four days at Siteman Cancer Center this month; this is the first. Today is treatment #72. I drove myself down here and it looks like it will be a very late drive home. My appointment was 3:00 and it is now 5:00 and pharmacy has not delivered the infusion bags yet. There are only 2 other patients in my pod and they are both receiving their first treatments. Hearing the detailed instructions and all their questions takes me right back to my first time here over 4 years ago.
I remember feeling overwhelmed more than anything; it had only been 12 days since I had found out that I had breast cancer and it had already spread to my bones, liver and adrenal gland. I know now that the short turn around time was a blessing as my cancer was aggressively spreading as evidenced by consecutive scans. I had cut my hair short in anticipation of losing it. In the photo you see my pink binder that had pages of test results, biopsy results, information about Barnes and lots of notes that my husband took for me so I could just try to listen and comprehend in all this early appointments. I wouldn’t be here today without Siteman Cancer Center and my husband, Dave. He keeps me going on the worst days and can always make me laugh during some of our toughest moments.
My cancer was not detected by my annual mammograms because I have highly dense breast tissue. I am an ambassador for My Density Matters. We work to empower women to know their breast density and to advocate for the scans they need if they have dense breast tissue. It helps my mental health immensely to tell my story and know that I am preventing what happened to me to happen to others. Please consider purchasing a Heidi’s Hope Box to support our organization.
https://powerplanter.com/drills-and-augers/gardening-augers/heidis-hope-box/
We are experiencing gorgeous fall weather here in Central Illinois. I had the privilege of playing the piano for a funeral in Gifford today so I was able to take county highways and see how the harvest of corn and soybeans is progressing 30 miles southeast of our farm. This funeral was for a good and faithful servant of Christ who started farming at the age of 14. As he lived to be 104, the first half of the church was packed with children, grandchildren, great grandchildren, and great-great grandchildren. Typical of farmer funerals, community members, fellow farmers and longtime church friends filled the rest of the pews. His first car was a Model A and his Farmall M sat in front of the church.
My favorite service to play for is a funeral. That may sound strange – so let me explain. Funerals are typically short-notice so music has to be found and learned quickly. Often a last minute song is sprung on us right before the service – one the family just remembered. That is my wheelhouse. Since I have played the piano for 48 years and the organ for 42 years, there aren’t too many hymns I haven’t played. I have a vast music library so I can usually find the music right at home. Sight-reading is something I love to do, thanks to the piano teacher I had in junior high and high school who began each lesson having me sight read. I guess it is like solving a puzzle, another hobby of mine. My goal every time I play is to allow God to use my playing as a conduit for a message to those hearing it. That goal is easier to achieve at a funeral rather than a wedding, which is typically a high-stress event for everyone behind the scenes. Finally, I think a funeral can be the most beautiful and meaningful church service, albeit painful. Certainly there is grief, but for a Christian, the funeral recognizes and celebrates the end of the earthly journey and the beginning of the ultimate life eternal.
I have learned to bring my journal along when I am going somewhere to play as I always have so many thoughts to record when the service is over. Today was no exception. I sat in my car in front of the parsonage and wrote page after page. I suffer from anxiety and am a trauma survivor. These things can block my mind from processing things as it should. But when I am playing, both sides of my brain are fully engaged. Left hand and right hand must be coordinated while they are performing very different movements. There are some extremely complex emotional and analytical processes going on. Studies show that the connection between both hemispheres of the brain in a piano player is much larger than in someone who does not. For me, this means my whole brain is needed to perform so there is no chance for trauma or anxiety to block thoughts. I feel such a strong connection to God and am able to gain many insights when I play that I could not otherwise. My therapist has prescribed more frequent piano playing for me. I cannot wait to get started on that.
I am not in control. 