When metastatic breast cancer is way down on my list of stressors it is time for some self-isolation and healing. I’ve put my life status on “out-of-office.” I’m at maximum capacity and cannot even make pleasant conversation for a bit. Dave, my three children, my mom and my big brother are holding my head above water and I am immensely blessed to have them.

I am typically an open book on my cancer journey for several reasons. First is that I am a lifelong journaler so writing is a passion. Second is that it stopped my family from having to constantly answer questions about how I’m doing. It evolved into the third reason and that is to educate people about breast density and why it matters to stop the insanity of people being diagnosed with late state breast cancer because mammograms don’t find cancer in dense breast tissue. Finally, I am learning the hard way how to help people struggling with illness. By telling you how I react to different things I hope to help you learn how to truly be a light for those with cancer.

I strive to protect the privacy of others. It is sometimes quite difficult to tell you about me without talking about the people in my life. You might know my father struggled with mental illness for several decades and required much caregiving for the last decade. The specific memories my mom and I share of those last years are too personal and painful to divulge. Likewise, others I love dearly have their own issues and they are not mine to share. My therapist tells me I was born and raised as a caregiver and that is what makes me tick. I hope so, because there are many people I love who need me and I need them.

I’m on my very first solo trip to Barnes. Someone I love is in a hospital so Dave remained home for them. I drove here on Sunday, right after church. I watched the Rihanna concert in a hotel room with a salad and fruit and hummus for the party food. I am an emotional eater and the last week has been especially hard but I persist in trying to care for this body that is fighting for her life.

On Monday I had a bone scan and a chest/ab/pelvic CT scan. These are the neck down scans I have regularly. It was a day of hurry and wait. I’m used to walking out of the scan area and finding Dave’s smile in the waiting area. Today I found several sunny areas to sit and read in between things. I couldn’t have anything to eat or drink until after my CT scan. Due to long waits, it was noon before I could hit the cafeteria. I took an Uber back to the hotel in the afternoon and had another quiet evening reading, journaling and napping. I also Facetimed Madi which made my day.

On Tuesday I will see my oncologist to get my scan results and have my 61st chemo treatment. Then I will drive home solo, with the radio turned up.

Each year on Epiphany my church lets us choose a star word as part of worship. This is a word that can travel with us all year as a guide or a focus. In worship today we had the chance to share our word for 2022 and how it was relevant for us. I was playing the organ at another church on Epiphany last year so I choose my own word, hope.

Because I love music so much I also love poetry. I have a journal with an Emily Dickinson poem on the cover.

Comparing hope to a bird is fitting because hope is never a heavy presence but rather something I cannot quite put my fingers on, yet I know it is always there. The ability of a bird to survive storms amazes me. On the coldest days I see flocks of birds hunting for food. Now that it is winter I am able to look up in the leafless trees to see all the nests. It takes much persistence to build a warm nest secure from the wind and rain one tiny component at a time.

On spring and summer mornings our old barn usually has several turkey buzzards sitting on top. They are not pretty nor do they make a pleasant sound. Their song reminds me of a small mammal in distress. How can hope be like a turkey buzzard?

I recently found a different perspective on hope attributed to Matthew Crow.

The very same Hope likened to a song bird is the very same courageous, rugged presence we see in turkey buzzards, hawks, owls, and eagles. Hope exists in the harshest conditions. Hope does not ask or require anything of us.

For me, hope is the opposite of positivity (a word I dislike). If positivity does not work out, it means you have lost or failed. Hope always wins. Positivity says, “You’re going to beat this.” Hope says, “I am going to fully live all the days I’m given.” Positivity says, “Stay cheerful and upbeat because that will help you remain alive.” Hope allows me to sob into my pillow in the middle of the night, yet still rejoice and thank God the next morning for being granted another day. Hope sits with me in the examining room as I wait for scan results, knowing that whatever the outcome, I will choose a path to move forward. Hope allows me to doubt and grieve. Hope allows me to falter and fear. With hope I can appreciate today no matter what happens tomorrow.

Hope lets me bury ugly dead- looking flower bulbs in the ground in the fall and rejoice at the gorgeous flowers that grow and bloom in the spring. This thought led to the creation of Heidi’s Hope in 2022. We raised thousands of dollars for My Density Matters so that women learn what breast density is and to stop the insanity of women being diagnosed with late stage breast cancer because the cancer could not be seen in their annual mammograms.

This beautiful tree sat at the front of church today and we could choose a new star word for 2023 as we returned to our seats from communion. I wanted to blindly choose a word so I reached to the back of the tree and grabbed a star. As I began to pull the star off the tree I realized another star was on top of it on the branch so I switched to the other word and pulled it off.

I still cannot believe I randomly pulled HOPE from the tree for my 2023 star word. Desmond Tutu said, “ Hope is being able to see that there is light despite all the the darkness.” My world is filled with light and I want to share that with all of you in 2023.

On January 3, 2023 I had my 59th chemo treatment. Registration was extra busy receiving all the new health insurance information for the new year. I met my annual out of pocket maximum all in one day. The cost of my treatments are around $40K. That’s $40K per treatment. My husband’s job has great health insurance so my out of pocket is considerably less than that $40K bill. If you are making health insurance decisions, always look at how a plan covers the worst case scenario. You just never know.

Early start means an early finish. On the walk to the car we can see progress on the new Siteman Cancer Center in the works.

On the Third Day of Christmas, my true love gave to me the care and support and love I need. We are thrilled that the tumor they treated in the fall has disappeared and there is nothing new in the scan. Merry Everything and Happy Always.

In March 2018 I joined WW. On July 16, 2019 I achieved goal weight (a healthy BMI). That was a 90+ pound weight loss. On July 24, 2019 I was diagnosed with breast cancer and learned it had already spread to my bones, liver and adrenal gland. (The next year it spread to my brain. ) I canceled my WW membership and focused on survival. I’ve described myself as a MBC thriver. Why thriver and not survivor? The simple answer is that I will not survive MBC.

A few weeks ago I decided that I need to focus more at being a thriver. A thriver flourishes and progresses. I am working with a trainer to regain some balance and mobility. I rejoined WW to reach a healthy BMI and stop my cycle of emotional eating that is related to my three-week chemo cycle. I don’t know how long my oncology team can keep my cancer controlled but I do know that I will try to live my life so that I support their efforts and my desire to grow old with my husband.

“I know nothing stays the same
But if you’re willing to play the game
It’s coming around again
So don’t mind if I fall apart
There’s more room in a broken heart” (Carly Simon)

My 58th treatment – feels a little surreal.

Everything in cancer land remains controlled. I have a parathyroid problem and will be seeing an endocrinologist for that. Seems to be unrelated to cancer. I think that if you have stage 4 cancer, you should get a pass on all other problems, health and otherwise.

My next brain MRI is 2 days after Christmas. The only thing on my wish list this year is a clear scan.

In other news, Dave and I celebrated the 36th anniversary of our first date last week. Here’s to the next 36 years.