Another Anniversary

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.