Step One

Beginning next fall, all mammogram reports in the U.S. will be required to report breast density. This is only one step toward preventing people from being diagnosed with late stage breast cancer despite getting annual mammograms. The last mammogram report I received before being diagnosed with Stage IV breast cancer told me I had extremely dense breast tissue. It did NOT tell me what that meant – that I needed an ultrasound or breast MRI to truly see if there was a tumor in my breasts.

The next step is requiring additional testing for all women with dense breast tissue. I have no training in the medical field. Despite that, I spend too many hours berating myself for not asking more questions. That’s why I support My Density Matters, founded by a friend here in my own home state. We are desperate to educate the public that people with dense breast tissue need testing in addition to a mammogram. I wouldn’t have a terminal disease if that regulation had been in place. Today, somewhere in this country, some person is receiving the shock of their life; It’s breast cancer and it has already spread to other organs despite your “clean”mammogram report. This is insanity and it must be stopped.

Raw Data

Cancer is hard. It is harder than I ever expected. I am not comfortable with vulnerability. The cold, hard truth of cancer has exhausted me. I have experienced many medical events since the diagnosis of metastatic breast cancer in July 2019.

✔️ 62 chemo treatments

✔️ 4 gamma knife treatments for brain tumors

✔️ 5 radiation treatments for a tumor covering my right adrenal gland

✔️ 1 radiation treatment to a tumor in my shoulder bone

✔️ 2 thoracentesis procedures (draining fluid from my lung)

✔️ 1 breast MRI

✔️ 2 complete spine MRI

✔️ 8 heart MRI

✔️ 5 echocardiogram

✔️ 8 brain MRI

✔️ 9 bone scans

✔️ 14 chest/ab/pelvic CT scans

Fighting cancer is a full time job. This gal is tired and is going to learn to say “no” a lot more.

Maximum Capacity

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.

My Cancer Valentine

Valentine’s Day at Siteman Cancer Center
Great day to wear Valentine leggings
Siteman is a Pepsi campus so I have to remember to bring my Diet Coke in with me.
I made chocolate covered Oreos for all the staff I encounter here. It made Valentine’s Day in the chemo pod a little more fun.
It is chilly here today but the volunteers will bring a fresh warm blanket any time I ask. Today I am receiving infusions of three drugs – Herceptin, Perjeta, and Zometa. I only get the Zometa every 12 weeks. It gives me pretty strong flu symptoms for a few days.
Chemo #61 is in the books and I am in the parking garage ready to drive home. Scans showed more broken ribs and a couple spots we will watch closely. I’ll take those results any day.

Cancer is not Everything

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.

Super Bowl Caesar Salad to Go
Reading and Journaling Fuel my Soul
It was so nice to begin a Barnes day with the sun up and not in the middle of the night as we usually do.
I’m staying at the Drury Inn Union Station, our favorite down here.
Monday Morning Sunshine as I wait for my Uber
Monday was Scan Day

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.

Star Word

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.

The good and the bad

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.

Leaping Lords

Our planned 4:00 am departure happened at 4:19 because of my fondness for the snooze button.
6:00 am stop in Effingham
7:36 am view
My Second Home – I love this place!
7th Floor
Love the architecture
Chemo Waiting Area (with edits for privacy)
Chemo Pod 7
Settled in my recliner with a toasty blanket for my 8:00 am appointment
Had one of my favorite nurses today who is originally from Brainerd, MN. She is ready to access my port.
Let me zoom in on that needle.
I’m all hooked up now for Chemo Round LIX

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.

The Third Day of Christmas – A Photo Story

4:30 am Departure for Barnes – Dave is driving and I am settling in with a blanket for some more sleep.
The sun is up and we are leaving Vandalia, where we stopped for gas and coffee.
I never grow tired of this view.
We have finally arrived.
Skywalk from the parking garage to Siteman Cancer Center
Masks are still required here and they must be surgical or N-95. There are no exceptions and we have never seen anyone not in compliance.
After a quick stop at the registration kiosk we came here to MRI Waiting Room A.
Waiting Room Mood – We are ready to get the day rolling.
The sneakers really set off the gown.
Neuroscience Waiting Room Mood: Pensive
Neurology Exam Room Accessory
Waiting Room Mood: Yikes!
(I was taking photos all day without a set plan. When I looked at this one later it took my breath away. We were in the exam room waiting for the neurologist to come in the with preliminary results of the brain MRI. Was the last round of gamma knife successful? Is there more cancer in my brain? You cannot see that we are holding hands tightly, waiting, knowing that we face the world together. )
No explanation needed. We are heading home.
3:10 pm – We are finally home. Dave can get some sleep before he leaves for work at 9:00 pm.

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.