Cancerversary #6

July 24, 2025

Six Stars Tattoo for Six Years Living with Metastatic Breast Cancer

On July 10, 2019 I found a lump in my right breast. Seventeen days later, July 24, 2019, I was told that I had breast cancer that had already spread to my bones, liver and adrenal gland. This came after 9 years of annual mammograms that were “not positive for cancer.” My most recent was 9 months before I found the lump. In 2020, the breast cancer spread to my brain.

I have received radiation for the tumor on my adrenal gland and one in my shoulder bone. I received five rounds of SRS (radiation) to my brain. I have infusion treatments every three weeks and will for the remainder of my life. I have had three rounds of gamma knife to brain tumors and recently had laser ablation of the newest brain tumor – my 12th one.

Since my diagnosis I have learned that I have extremely dense breast tissue that makes it much harder to see breast cancer on a mammogram AND is a significant risk factor for developing breast cancer. A person with dense breast tissue has a 60% higher risk for developing breast cancer than a person without dense breast tissue.. How I wish I had known this before my diagnosis. I had never heard of breast density and didn’t know I should have been receiving additional screenings each year in addition to my mammogram.

Did you know that there are scarce resources dedicated to researching Metastatic Breast Cancer?

I am raising money for METAvivor because 100% of their funds go to researching Metastatic Breast Cancer – the only breast cancer that kills. I need research to find new treatments to extend my life.

This is a link to my fundraising page.

https://donate.metavivor.org/fundraiser/5554408

In Conclusion

Today is the last day of Breast Cancer Awareness Month. Please don’t let MBC slip from your mind. This year an estimated 115 people in the United States will be killed by MBC every day.

From Metavivor:

“With the impending flip of the calendar, the “Breast Cancer Awareness” campaigns will retreat back to their pink shadows for the next 11 months – but we can’t ignore stage IV for even a minute. It is estimated that more than 42,000 people will die from MBC in 2024 in the U.S. alone, and these heartbreaking losses won’t stop until we collectively aim more than the current 5% of all breast cancer research funding at the only fatal form of the disease.”

I am so thankful for all the support I received from Dave and all of you for my Light Up MBC fundraising and awareness. I can still hardly believe my beloved Assembly Hall (I mean, State Farm Center) was lit in the MBC colors of green, teal and pink for National Metastatic Breast Cancer Awareness Day, October 13.

I participated in the Be a Hero Fun Run in Plainfield, IL for Light Up MBC on October 12. My cousin, Suzi, drove me up and walked with me. My dear friend Patti also drove up and joined us. It was a beautiful day and I got to see my MBC friends April and Lisa and meet some new friends.

My dear friend, Greg Niewold, of Power Planter introduced me to Jerry and Jenny Simpson of Creekside Nursery. We made a video that has 24K views on You Tube to spread awareness of MBC, to promote the Light Up MBC Campaign, to promote breast density awareness (My Density Matters), and to announce a Creekside Nursery Signature Event that raised thousands of dollars for Light Up MBC in their live auction. Greg has done so much to support me since my diagnosis and help me spread awareness. He is an amazing human.

Greg hosted a Live Watch Party for the Light Up MBC event so people could watch the show and see me tell my story (with Dave by my side) in front of State Farm Center lit in MBC colors. I don’t know the details of the party, as I was busy with the live filming. It was a crazy night, as the lighting technician was delayed. The green, teal and pink lights did not happen until minutes before I went live. I’ve heard from many of you who watched it and my phone was pinging with texts. You all made me feel so loved. Dave and I stayed a long time after the event was over, just soaking it all in.

I encourage you to follow Metavivor, Light Up MBC, and My Density Matters on social media and I thank you for following me on my mission to raise money for metastatic breast cancer research. The Light Up MBC campaign runs through December 31. My fundraising page will remain active until then. This research is needed to save lives, including my own.

https://donate.metavivor.org/fundraiser/5554408

Know your breast density and why it matters. Perform monthly self exams. Get annual mammograms. Then get additional screening if you have extremely dense breast tissue. Don’t let my story become your story.

Thank you so much for your love and support. It means the world to me and helps me get through some really difficult days.

Light Up MBC Live 2024

This is a link to a recording of our show. I have so much to say about the events of this past weekend, but I am too tired to string many words together well.

It is a 2 hour video. My story comes around the 1:30 mark. I urge you to watch the whole show. I’ve heard some comment that it is too sad to watch. The point of our stories is to show what it is really like to live with MBC, yet to make people aware that we are just like the rest of you – trying to live full lives. You will learn so much about MBC and see all the amazing research.

There are so many new treatments on the horizon. It makes me wonder how much more there would be if more than 2% of all breast cancer research dollars was focused on metastatic breast cancer? Even if we could tip the scale slightly and get 10%, I cannot fathom all the marvelous things that could be extending our lives and making them better.

I’ll end with this: You’ve heard me say or write that around 115 people in our country die every single day from metastatic breast cancer. Did you know that number has held steady for well over a decade? That means the equivalent of a small jetliner full of people die every day from a disease and we are not making any progress on stopping it.

I have so many people to thank for their donations and support. I will get to that soon. For now, please know that your encouragement helps me on some of my darker days. I was so moved by seeing State Farm Center lit in pink, teal and green. I told Dave I wanted to spend the night down there so I could keep watching it. 🩷💚💙

https://www.youtube.com/live/RQQVtZIpFGs?si=FimkefGYPodD5CBu

It’s me. Hi. I’m the problem. It’s me.

Time flies. Tomorrow (Tues, August 22) I will drive to St Louis for treatment #70 and to visit with my oncologist at Siteman Cancer Center. I am going on my own again because I really like being on the open road listening to music and singing at the top of my lungs. I am driving down and back the same day. So much has happened in my life in the past several months and I think that, just maybe, it is settling down. (I just knocked on my wooden desk, just in case.) I needed a break from social media and deleted the accounts under my name. It’s me. I was the problem.

I hit a point where I realized I was thinking too much about the clicks (think clicking the like button) and not on the relationships with the people in my community. I realized that hitting the “like” button or the “I care for you” emoji was not in any way being supportive or interacting with my community. Deleting my accounts forced me to send text messages and emails and actually make phone calls to people, and I was missing that. Now I have new accounts under the name Mbc Heidi but I am determined to make connections with people besides clicking buttons. I have so many email threads going with friends from college, friends from church and relatives and it helps me to be able to interact in words and not clicks. Thanks for your understanding and patience over the past few months.

This photo explains much of what I’ve been doing to heal my mind. I’m taking online art and writing classes. You can see that I’m still very much a beginner calligraphy but I love how I concentrate on it so much that it quiets my mind from daily worries. I’ve gotten back to journaling every day, a habit I began in high school. I am not good at speaking on the fly. I need time to sit with my thoughts – to let them percolate – to grow comfortable with them – to sift through them to remove the chaff. My planner is on my desk and I journal some in it every day. To the right of my planner is a journal I use for my writing classes and to expand my journaling on days that just won’t fit on one page. On top of my planner is some snail mail ready to go to the post office. I love sending and receiving mail. You can see some cards I received lately, too. I keep all of them in boxes and love to revisit them. At the back right on my desk is my Bible and a prayer study I have been working on for weeks. You will see two Bibles because sometimes I like to use my parallel study Bible when I’m not feeling connected to a particular version. I’m still focused on the same Bible verse: God has made me fruitful in the land of my affliction. (Genesis 41:52) When I first blogged about this verse, I was not feeling fruitful at all. Now I am able to choose hope and joy again and am so grateful for all the people in my life. My church newsletter is always out as a reminder. My church family has enveloped me with so much love and care this summer. In two weeks we will begin serving a free community dinner on Wednesday evenings and you will see me there some weeks washing dishes. (My 4-H House sisters know that I always choose Dish Crews rather than Cook crews!) Choir will start up again for the school year. Our book club is planning to meet again soon. Being part of my church fills my heart and gives me purpose.

I must add this photo to explain how I’ve been healing. When I am at my desk journaling or taking online classes or participating in my support groups, Independence and Madilyn are never far away. They love to sleep on or near me. I could not have made it through this year without them. I spend most of my time here at home without other humans around, but never without my two faithful labradors. My little car is full of black dog hair because I usually take them with me to run errands. No time spent with a dog is ever enough.

I will soon be sharing more information about Heidi’s Hope boxes since it is time to think about fall bulbs again. I had the privilege of speaking at the Hoopeston Area Breast Cancer Support Group last week about My Density Matters. A dear friend from my teaching days is a member of the group. I will definitely be joining this group regularly from now on. They are really amazing and supportive and so welcoming. Next month I will take the 2023 version of Heidi’s Hope Box to share with them.

LXIV

Today is my 64th chemo treatment. Dave and I left home at 5 am and made the 3.5 hour drive to St Louis. The patient was actually ready to leave on time today (highly unusual) so we arrived with time to spare.

The future Siteman Cancer Center viewed from the roof of the parking garage.

Since we arrived with time to spare, we parked at the top and I was able to get in a walk before my medical day began. We also stop along the drive for me to make laps around a rest stop, as this generally makes me a lot less sore the day after our trip. They are building a new Siteman Cancer Center location down here right next to the parking garage. It is expected to open in 2024 and will certainly improve my patient experiences. I remember hearing about plans for this building not long after I was diagnosed and I am so thrilled to be around to see it coming to fruition.

The building on the left is the Children”s Hospital. I have friends whose children have received cancer treatment here. It is a first class place. It also houses the place where someone we love received a diagnosis of autism many years ago. I would prefer if all children were spared from diseases and conditions. Maybe someday…. The building on the right is the Center for Advanced Medicine, where I get my scans and treatment and where I see my oncologist.

Dave will work tonight so he grabs sleep when he can, as he did while I enjoyed the warm sunshine while I walked laps on the parking garage roof.

St Louis is 3.5 hours southwest of home, so it is always warmer here and I enjoy seeing things bloom earlier than we do at home. Dr. Folusa Olabisi Ademuyiwa (Dr. Bisi), my amazing oncologist, mentioned that her Heidi’s Hope tulips are blooming. Abbott-Ipco, Inc. donated tulips for the Heidi’s Hope Boxes sold by Power Planter. We raised money for My Density Matters to help spread the word about breast density and why it matters. Power Planter sent Heidi’s Hope boxes to my oncologist, my radiation oncologist, and my neurologist on my behalf.

My first appointment today was to access my port and draw blood for several tests ordered by my oncologist, Dr. Bisi. My second appointment was to see Dr Bisi to monitor my progress. My labs looked great and I will have neck-down scans in 9 weeks and see her again to discuss results. I have to take precautions while my port is accessed since it runs directly to major blood vessels. The bright green sticker means that I have been accessed and cannot leave the 7th floor. If I have appointments on other floors, they cover the area with a specially-made bandage for protection that leaves my chest sticky for days.

Noise cancelling headphones are a requirement for me in the chemo pod because, frankly, some people are just rude. Your chemo pod assignment is luck of the draw unless you have special needs ( I don’t) and I haven’t been very lucky lately. Three weeks ago a patient in my pod tried to bite one of the nurses and a man directly across from me coughed up mucus and spit it into a bag the entire time I was there. Six weeks ago the pod was filled with LOUD TALKERS – I could hear them over Rihanna in my headphones.

Dave will work a full shift plus this evening after he drives me home from chemo. He caught a little sleep on the floor of the chemo pod next to my chair. This is love.