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

Poking my Head out from the Cave Again

July 24, 2025 will be the sixth anniversary of my Metastatic Breast Cancer diagnosis. July 10, 2019 was the day I found the lump. The days in between that and the horrible diagnosis are etched in my memory. July is a difficult month for me. I have not felt like blogging for a long time. This is what my body has been through so far:

Treatments: 102

Gamma Knife Procedure: 3

Brain Radiation SRS: 5 rounds

Adrenal Gland Radiation: 5 rounds

Shoulder Radiation: 1 round

Spine Surgery: 1

LITT to remove a brain tumor: 1

Brain MRIs: 17

Whole Body Bone Scans: 14

Chest/Ab/Pelvic CT Scans: 19

Echocardiograms: 9

Heart MRIs: 9

Breast MRI: 1

Complete Spinal MRI: 1

Thoracentesis to drain fluid from my lung: 2

Hospitalizations: three

This was a photo from treatment 102. Next Tuesday, July 22, will be #103. It has been a whole year since I had a new brain tumor – a record for me. Along with my infusions every 3 weeks, I take 2 oral chemo pills morning and night. They are not kind to my digestive system, but they are manageable, especially since it seems to be working. I am an ambassador for #LightUpMBC again. We raise money for Metavivor for metastatic breast cancer research. This is even more important now that the controlling political party has slashed billions from cancer research through the NIH with the support of every voter who helped to elect them. My fundraising page can be found here:

https://donate.metavivor.org/fundraiser/555408

I am grateful for those of you who have reached out to me while my blog was on hiatus. It means a lot to me. The painted rocks seen in photo at the top of this blog were a special gift from 3 people who know just how to add smiles to my day. Some of you even keep up with my treatment days (still every 3 weeks and still on Tuesdays). A little text or email to let me know you are thinking of me really brightens up those days. I am really tired of dealing with Stage IV cancer every day. Grief over that and missing my mom seep into all aspects of my life. Most days I still have the urge to pick up the phone and call Mom, to share something exciting or something that scares me. I carry her with me in my heart always. I appreciate any shares of this site, as I am still taking a huge step back from social media. You can also sign up to receive new blog posts via email.

I leave you with my new mantra: You don’t have to like it or want it or approve of it. Simply allow it to be there – because it already is.

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

Practically Positive?

~ I believe it is very important to stay positive.

~ I believe no one should tell someone else who is hurting to “stay positive.”

~ I have told people to “stay positive” in the past and I sincerely apologize to each one of you.

My definition of positive looks different than other people’s definition. I take my definition of positive from my favorite book of the Bible, The Psalms.

Psalm 13:1-2 is wonderfully uplifting: How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me?

One of my favorite hymns cheerily begins with the lines from Psalm 130: Out of the depths I cry to you, O Lord! O Lord, hear my voice! Let your ears be attentive to the voice of my pleas for mercy!

Psalm 88:14-15 is really upbeat: O Lord, why do you cast my soul away? Why do you hide you face from me? Afflicted and close to death from my youth up, I suffer your terror; I am helpless.

My oncologist told me in the fall of 2019 that I had somewhere between 2 and 30 years left to live. When I told people that, several remarked that most people my age could say that. (Not helpful or true!) After we learned the cancer had spread to my brain, my oncologist would not give me an update in years, but did tell me I should switch to working no more than half time so that I could spend time with family. (Yikes and no, half time at my company is not an option. I am a department of one. ) I have researched this and have learned that oncologists are trained to take the true predicted life expectancy and multiply by 3 to get the top number and divide by 4 to get the bottom number. Ten times 3 is thirty and ten divided by four is two and change. Since the median life expectancy for all MBC patients is 2.5 years, I really didn’t learn anything from asking my oncologist this, and I don’t believe it is a question that has an answer. Through online groups I know many people who have endured MBC more than a decade. At Barnes (pre-Covid) I met 3 volunteers who have had MBC 13, 15, and 17 years. Sadly, I also know many in my online groups who don’t make that 3 year mark. If you are keeping score at home, it has been 19 months since my diagnosis.

My definition of positive doesn’t allow me to poke my head in the sand and continue life without changes. My definition of positive does not allow me to wallow constantly in misery. I intend to only die once – meaning I need to focus on living so that death only gets its one moment with me. My bucket list has changed. I’ve already hit the first, my oldest child’s college graduation. (Darn you, Covid, for making an actual ceremony impossible.) The remaining items (so far) are: my youngest child’s high school graduation, my middle child’s college graduation, and my youngest child’s college graduation. My youngest is thinking of med school so I better stay focused on my treatments and taking care of myself! The final entry is to enjoy my remaining years with my husband and kids. Are there other things I’d like to experience? You betcha. Those are the things God and I talk about late at night.

So what does positive look like for me? Positive means I am working to support my family. It means that I have a bucket list that looks several years in the future, well past my median life expectancy. Positive means I am making journals and writing letters to my kids in case I don’t hit those milestones. It means I have travel plans with friends in upcoming years and we talk about them and they bring me joy. Positive also means that milestone days and holidays devastate me because I wonder if it is my last. Positive means that my husband and I have planned many little trips. Positive also means my husband is changing his work schedule to ensure we have more time together now. Positive means that sometimes I am so happy I cry. It also means some days I am so depressed that I cry.

God does not expect me to be happy all the time. People who tell you to not worry because God is in charge are either ignorant or mean. “How long, O Lord? I am helpless.” God understands our humanity. We need to allow ourselves and our neighbors to be human, too.

Where is the Instruction Manual?

My main goal in life for over 20 years has been to be the best mom I can be for my kids. I visit about this goal with God every night. My oncologist knows how important they are to me and she always asks me about my kids. At my appointment last week, I think we talked about my kids more than my cancer. My Nurse Care Coordinator through my insurance company asked me to set a goal for myself when she met me. My instant response was to be as healthy as I can in order to enjoy life with my family. That goal has never changed. She has me repeat that goal at the end of every phone call and it energizes me.

The world is full of advice on how to raise kids of all ages. It is pretty simple to find advice on how to tell kids you have cancer. There aren’t many suggestions on how to keep parenting when you have stage 4 cancer. My kids were 21, 18 and 16 when I was diagnosed 19 months ago. They are absolutely incredible and are well past the stage of needing discipline, but they are dealing with huge life changes and decisions to make —- college, major, job, living away from home, etc. There is a lot of pressure on them anyway and now they also have to deal with my illness. I despise what cancer has done to them.

Cancer makes me less of a mom. I have physical limitations now so I cannot walk long distances or do much climbing. Nineteen months of treatments have made a mess of my digestive system so I cannot be far from a bathroom. My energy level is much less than it used to be. I battle anxiety and depression. My immune system is compromised so I wear a mask in public and haven’t been able to go anywhere with them in a long time due to COVID. All three of them are so helpful to me and simply wonderful human beings. They deserve to not be weighed down by a mom with a terminal illness and I would give ANYTHING to remove this burden from them. I’m still looking for that particular how-to parenting book.