BuiltaLife

Earlier this year, I was selected to be an Advocate for Living Beyond Breast Cancer, specifically the Hear My Voice class of 2025.

When I accepted the nomination, I thought I would learn how to share my story.

During training we were tasked with “create an elevator pitch.”

Hi, my name is Kim Builta. I have been living with Stage 4 or Metastatic Breast Cancer (MBC) for 14 (now almost 15) years. I call myself an MBC unicorn since the average life expectancy when I was diagnosed was about 36 months.

I am a daughter, a mother, a widow, and I am One of the 1 in 8 women diagnosed with Breast Cancer. AND One of the 150,000 women (and men) living with MBC.

I did not know anything or have a community when I was first diagnosed with early-stage Breast Cancer in 2003, and I knew even less when I was diagnosed with MBC.

Breast Cancer is more than a pretty pink ribbon. My kids were 5 and 8, now they are 27 and 30, and have lived most of their lives under an umbrella of fear, wondering if the next progression will be the last.

I wish more women could have a sense of community as well as access to trusted information. That is why I’m asking you to donate to the LBBC as they share the same mission.

While I was excited to embark on this journey of sharing my story and advocating for LBBC, I did not expect to have such conflicting emotions along the trail.

I began my advocacy with a fundraiser idea. I started walking and I used the hashtag #WalkWithKim4MBC. People donated and cheered me on. Some friends even joined me on my walks. (I had to take a brief hiatus, but am now back to walking, you can follow along on my adventures on Instagram.)

This is what I signed up for, I thought. I am strengthening myself by walking, spreading news about MBC and LBBC, and collecting donations to help support their mission. It was a win/win/win.

That’s when I started hearing the words that are like nails on a chalkboard to me

“You are such an inspiration!”

I would smile and say thank you, but inside those words were creating knots in my stomach. I pushed the knots aside for a while, but they continued to grow and were now wrapping themselves around my heart and squeezing tighter every day.

I hated those words. But I couldn’t explain to myself, much less anyone else, why.

Yesterday, I had another innocent conversation. I was sharing a little about my story and about LBBC. The person I was talking to said those 5 words to me and I felt the familar knot inside growing. I sat with the words the rest of the afternoon. Trying to define why they bothered me so much, after all that is what I signed up to do when I agreed to share my story and talk about LBBC.

I’m not going to say I have the definitive answer, I haven’t talked to a therapist about this, nor unraveled my childhood to discover the root cause.

Three things continued to ruminate in my mind as I took a walk and thought more about it.

1. Survivor’s guilt. When I was first diagnosed with MBC in 2010, my husband and I were certain I would die first. After all, the average life expectancy was only 36 months. But 5 years later, he was diagnosed with renal cancer and passed away after only 10 monhts. And I’m still here. I’ve written about survivor’s guilt before. It is a real thing and, for me, it is always lurking, but as the anniversary of my husband’s diagnosis looms in the next few weeks, the guilt begins to bloom like a spring flower that appears so bright and vivid for a few weeks, just to die off and return again the next year (or the next anniversary)
2. Imposter Syndrome – Most days I don’t feel like an inspiration. I once told my father that boys/men found him intimidating when I would mention that he was a three star general he’d say “Tell them I put my pants on one leg at a time, just like everyone else.” When someone says “You are such an inspiration” I think “I put my pants on one leg at a time…” Many times the only thing going through my head when someone says that is, “what you don’t know is how hard it was to just get out of bed this morning.” While it is true I am still here after 15 years, the truth of the matter is it is nothing that I have done by myself. It has been 9 different medications, and many doctors who have been part of the team that keeps Kim going. Kim is not the Inspiration, the team behind her (and that includes many of her friends who keep her going behind the scenes) is the inspiration. Kim is just a face, and calling her the inspiration makes her feel like an imposter.
3. Inspiration, the word itself, as defined by Merriam Webster: “a)the action or power of moving the intellect or emotions, or b) the act of influencing or suggesting opinions.” As a creative type (well, I’m trying to embrace that I’m creative these days), I find inspiration in various places. Usually for me it is an object that I may see on a walk, like a flower, pushing through a crack in the sidewalk. Or a rainbow that appears in a puddle when my head is turned in just the right way. These things can inspire me to think beyond myself and wonder about that flower and how it found the strength to push through and around concrete.

On my walk yesterdayI realized when someone says those 4 or 5 words, what they are really saying is I am the flower that has pushed through. However, as the flower that is now reaching for the sun, I am aware of all that has gone before me, the many other seeds and flowers that tried to push through and perhaps only created a weak point for the next flower to finally emerge triumphant.

So the next time some tells me “you are an inspiration” I am going to try to accept it with the grace in which it was offered. And silently I will try to unfurl the knots in the pit of my stomach and say a private “Thank You” to all of those who have gone before me and who still walk beside me to allow me to reach for the Sun. And maybe one day, because of my advocacy and telling of my story, there will be a field of flowers where once there was none.

Back in October, I wrote a post about rediscovering who Kim is.

I thought I should give you an update.

Over the years, I have shared my story on this blog and on a more individual level as friends have asked if I would be willing to speak to someone they know who has been recently diagnosed with cancer (mostly breast cancer, but others as well). I have not exactly stood on the rooftops and shared my story, but have been happy to share when asked.

Now I’m being asked, prodded, urged (insert any suitable synonym here) to share my story and be an advocate.

This spring, I was selected, alongside many other fabulous women, to be part of the class of 2025 Hear My Voice Advocates representing Living Beyond Breast Cancer (lbbc.org). We are a cohort of 31 women who are all living with Metastatic Breast Cancer.

The LBBC provided us with phenomenal training and support for using our Voices to advocate for not just LBBC, but women (and men) going through either a new breast cancer diagnosis or others, like me, who have been told, “You have metastatic (also called stage 4 or secondary) breast cancer.”

We learned a lot over 4 days of training. We learned about LBBC and their mission; we learned they have a $7 million budget for this year, half of which comes from donations; we learned the difference between personal, community, organizational, media, scientific, policy, and legislative advocacy. All of which play a vital role in helping make the world a better place for those living with a breast cancer diagnosis. I’m thankful some feel very strongly about advocating for policy, legislation, and even scientific changes. Those are not my strengths; my advocacy is more focused on the personal, community, and social levels

While all of the training and exercises were very helpful, two of the exercises have stuck with me.

For one of our exercises we were tasked with creating an LBBC Elevator Pitch. This was an interesting exercise and made me stop and ask myself who I am and why I am doing this. My elevator pitch – still needs some refining, but for helping to raise funds for LBBC, I think it hits close to the mark:

On the last day of training we were tasked with creating our first Advocacy Project – How will you advocate in your local community?

Although this was an exercise to get our minds to think of ways to advocate, I was met with support by the other participants in the cohort, and I decided to move forward with my idea.

• My main focus for advocating this year is fundraising by creating a monthly goal for walking and asking for donations. Much like when my kids were younger, on the swim team, and the team would raise funds by getting pledges for swimming laps.
• I set a goal to walk 15 miles in April, and I asked people to donate via my fundraising page for LBBC.
• I posted pictures of my walks on my Instagram and Facebook feeds with #walkwithKim4MBC to encourage people to follow my progress and perhaps even join me for a walk.
• I was encouraged when friends, and even people I haven’t seen in years (since high school), reached out and wanted to join me on my walks.
• We are now closing in on the end of June, and I have continued to walk (sometimes on the treadmill, because it is HOT in Texas right now). My goal for June is 20 miles, and I will meet that goal!!
• After 14 years of treatment for MBC, a hip that isn’t exactly put together according to the manufacturer’s guidelines (2017), a broken femur (2021), and a broken tibia (2023), walking can be a challenge. But it has been amazing to read and hear the support I have received, all because I posted a picture of myself out walking.

Have I learned or discovered anything about Kim in the last couple of months?

YES.

I have learned that I do not like being referred to as strong or resilient or even as an inspiration. Those words have connotations for me that suggest I cannot be vulnerable. While the words are often said with good intentions, I have days when being strong may be nothing more than getting out of bed in the morning. Remember, no one raised their hand and asked to live with Metastatic Breast Cancer. So instead of telling me I’m brave, or strong or resilient, maybe just say “I’ve been thinking of you,” or if you are a praying person, “You’ve been in my prayers.”

I have learned that while I don’t think of my story as being “all that special”, I have heard from others, and am finally taking heed, that I should be sharing more of my story. When you are the one living it, it is hard to see that others may find it helpful to hear. I have begun sharing more with the MBC community on Instagram (feel free to follow me @builtalife ).

I recently finished watching Season 48 of Survivor. I am reminding myself daily that NOT sharing my story would be equivalent to being on Survivor, having an Immuniy Idol in my pocket, and getting voted off because I didn’t use it. So now I will use my voice and my story to advocate for myself, for others living with metastatic breast cancer, for living a life full of joy and adventure with the occasional days off to rest and recuperate before getting back out there and doing it all again.

Last week I very quietly celebrated our 32nd wedding anniversary. Honestly, I acknowledged it when I woke up. I blew a kiss towards heaven and told him Happy Anniversary. There wasn’t much fanfare to the rest of the day.

I returned the previous Monday from a great trip to Florida. And frankly I was exhausted from the trip and from the two weeks of radiation I had undergone just before I left for Florida.

In past years I’ve tried to do something to celebrate the anniversary. A few years ago I went skydiving to celebrate the day.

This year I didn’t have the energy to do much of anything. And that made me a little sad.

Recently, I was thinking of everything that has happened since J.R. died. I realized that I have been living with metastatic breast cancer longer without him than I did with him.

That hit like a ton of bricks.

When we first found out I had metastatic breast cancer it was October 2010. At that time, the statistics for survival with metastatic breast cancer were about 35 months. With advancement in treatments, the current 5-year relative survival rate for metastatic breast cancer is about 22%. In other words, 22% of those with metastatic breast cancer will live beyond 5 years.

So forgive me if I’m a little shocked some days when I tell people I have been living with metastatic breast cancer for 14 years. Yes. I’m an outlier. And I accept that. And most days I’m proud of that.

I’m not sure what made me do the math the other day. But in 2010, if you asked me or J.R. if we thought I would still be here in 2025, I would have laughed and said ‘No’. J.R. probably would have had a different reaction. He wouldn’t have laughed. He would have more likely said something along the lines of “we are going to do everything we can to try to make that happen.” I wouldn’t say he was an optimist. He was a trouble shooter, always trying to figure out a plan. Which is one reason I still find it hard to believe he died before me.

J.R. died in July 2016. Just shy of six years from my metastatic diagnosis. I’ve said before that it makes no sense that I am still here trying to figure out how to keep living, while he is gone. No one saw that coming in 2010.

So if you have done the math like me, I have now been living with metastatic breast cancer for almost nine years since he passed away. Some days it is hard to believe that to be true, and others it seems even longer.

But on our 32nd wedding anniversary, when I closed my eyes, I felt him whispering in my ear “Keep going. You’re doing great. I love you.” And I needed to hear that.

According to Bob Dylan, “There is nothing so stable as change.”

I have to agree. In my world of dealing with cancer, I am always pleasantly surprised when scans come back as stable. And a little anxious when something changes.

The reality of living with metastatic breast cancer is there will always be change.

2025 started with the opportunity to face change once again. In November, my regular scans showed no progression on the CT scan but the bone scan showed progression. Trying to get more definitive answers, my oncologist scheduled a PET scan.

December seemed to drag on far too long – between the wait to schedule the PET scan, and then waiting for the results, all while my oncologist was on the verge of retirement.

Then January came along with the opportunity to embrace change, again.

I met my new-to-me oncologist on January 3rd. I liked him from the moment he walked in the door. He had taken the time to be familiar with my history. Whether he discussed it with my previous oncologist (now retired from seeing Cancer patients) or read my very long file, he impressed me. And it takes a lot for a doctor to impress me.

After reviewing the results of the PET scan he suggested we do another test. Specifically a blood test to ascertain if there are mutations in the cancer cells. He explained that although I had previously had this type of blood test, at the time it was performed, my cancer was stable. He proposed now that the cancer was active again, as shown by the PET scan, the results may detect mutations not present when the cancer was not active and hoped it would open up other treatment opportunities.

To my prayer warriors who prayed I would be a mutant (IYKYK) – THANKS FOR ALWAYS BEING THERE FOR ME

The results are in. The oncologist was almost giddy (if an oncologist can be giddy) when he walked into the room and showed me there were 2 mutations. He told me he would have been happy with one, and that hardly anyone has TWO (even if it isn’t true, I love thinking I’m always beating this game).

The new doctor is learning he has a patient with a sense of humor. At our first meeting, he said, “You have been seeing Dr K for more than 20 years, and I’m coming in in the middle.” I immediately told him “I sure hope so.!” At this appointment, I enlightened him that I was a cancer unicorn and he graciously laughed. Living with metastatic breast cancer for 14 plus years, and now, not just one mutation, but two. I’m rocking this cancer unicorn thing!

I am feeling extremely optimistic about these new changes. First, finding a doctor who could have just come into the room and asked me to tell him my story without doing his research first, but didn’t. Second, that the doctor requested a mulligan on the blood test, hoping it would give us more information. Third, the results of the test have given us options in treating this pesky cancer.

New Year, New Oncologist, New Mutation, New Medication, ReNewed Hope

Once the insurance is sorted out, I will start my next line of treatment (is it number 8 or number 9? I really should look that up).

I’m forever grateful that organizations like Metavivor support breast cancer research. The drug I will be taking was approved by the FDA in January 2023 to treat ESR1 mutations (if you’d like to learn more about this mutation you can click here). Once again I am taking a medication that wasn’t available when I was first diagnosed in 2010. Without continued research, I would be left with fewer options and less hope.