One Face, One Voice: Kim Crist’s Metastatic Breast Cancer Story

Guest Post By: Kim Crist

After I finished treatment for early stage breast cancer, I never considered that I was in remission. I told everyone I was cured. The doctors told me after four months of chemotherapy and 40 rounds of radiation that I would be just fine. It took me a long time to really believe that I was going to be okay. For years, I couldn’t drive by my oncologist’s office without having that “sick to my stomach, I had just had chemo” feeling. But the nauseating fears were finally gone when I hit the five-year mark. I remember driving by my doctor’s office and realized I didn’t think about my cancer. I had finally let go of my fears and realized I really did beat this.

It turns out there is no way to know if you have a cancer cell tucked away. It was almost 10 years after my first diagnosis that I was diagnosed with Metastatic, or stage four, disease. They say if you go five or 10 years, you’ve beat it… I thought I was home free. Not one doctor told me the true statistics for recurrence. If I had known, maybe I would have been more diligent in taking my estrogen blocker. Maybe I would have done more research at the time. Perhaps I would have known what symptoms to look out for. The maybes, the what ifs take a toll.

Funny thing is, I thought I was taking care of myself. I worked out and lifted weights, I took exercise classes. I even thought I was doing too much because on two separate occasions I ended up in the ER with crippling back pain. I had to actually leave during the middle of a workout class. Each time being sent home with pain meds and muscle relaxers. Not one doctor asked about a cancer history.

It wasn’t until a routine yearly blood work and oncologist visit to get my mammogram prescription that my doctor saw a rise in my tumor markers…the results you have figured out. What does this diagnosis mean; Metastatic Breast Cancer?? As far as I’m concerned Metastatic disease is a polite way of saying you have stage IV cancer. Stage IV?? We get it now. At least one would think so.

I believe Susan G. Komen is a wonderful platform. We have so much information to share and research left to be done. Walking and raising money allows me to share my story and hopefully teach someone else what to look out for and what questions to ask. Why didn’t those doctors know to ask if I had a history of cancer? Why didn’t I know that bones are the most likely place for initial metastasis? Why didn’t I think to, or better yet, why didn’t I know to ask for an MRI over an X-ray? X-rays don’t show cancer. This is important information that I wish I had known and needs to be shared.

“We need to laugh. We need to laugh at ourselves”

Now, people ask me, “Are you in remission? You’ll be cured, right? Are you done with your medicine?” The answer? No, no and no. They ask, things like, “how long will your medicine work?” Until it doesn’t. Then I’ll find another drug. All in hopes of going another three months praying and stressing that the next scan is stable. I can live with it in my bones, I dread the day it attacks my organs.

Right now, there is no time for being sick and no time for stinky thinking. No time for rest. Now is the time for faith and giving back. Being a Susan G. Komen walker and super supporter has given me an opportunity to talk to people from all over the country. The 3-Day brings together a large community of fighters, survivors and the surviving.

As a 14-year walker I’ve not only seen the impact we have made in research, but I’m living proof. Coming up on five years, I would have never thought I’d have the quality of life that I do. My bones are weakened by the cancer slowly eating away at it, but now there is a simple shot I take every quarter to keep me strong. My freedom and quality come from not being stuck in a chemo chair. Breakthroughs have happened!! But we have to keep working.

“It’s important to keep your strength and be out in nature”

Thank you, Susan G. Komen, thank you fellow supporters, sponsors and researchers. This walker will never give up and I will never give in.

Learn more about Metastatic Breast Cancer. If you or a loved one has questions or needs support, please call 1-877-GO KOMEN.

Official Sponsor of the 3-Day®

I Walk for Mary Beth: Linda Harris’ 3-Day Story

“We meet people every day; it is important to pay attention to the ones who will make an impact. We all have a warrior in us, but I know my fight started with Mary Beth. She was the one.”

Linda H. began walking the 3-Day in 2012, and since then has joined our pink family everywhere from Michigan to San Diego to the Twin Cities this past year. She has walked and crewed and has supported Susan G. Komen’s mission throughout the years even when she’s not on one of our 3-Day weekends. This commitment didn’t happen by accident.

In 2012, she never thought she’d be able to walk 60 miles. But then she met Mary Beth L., and everything changed. Linda walks for Mary Beth, and for all of those in her life who have felt the cruel impact of breast cancer. She will never quit. After honoring Mary Beth at our Twin Cities 3-Day this past August, Linda shared her full story with us.

How did you first come to join the 3-Day?

About 10 years ago I was sitting at my son’s football practice. I had become friendly with one of the moms, Mary Beth, through our sons. We had met years earlier, but we only really started to get to know each other through football. Then one day, I noticed this well put together woman had extremely ugly feet. Not necessarily ugly, but blisters and toenails missing!

“Excuse me, I have to ask: What is going on with your feet?!”

She laughed and said, “I just completed the Susan G. Komen 3-Day.”

My heart immediately began to race! That was something that I had always wanted to do. She began to tell me that she had walked for years but had been diagnosed with Stage 2 breast cancer, so this past walk was especially meaningful to her.

All I could say was, “You just walked 60 miles AND you have cancer?”

I had always told myself that I was too busy or could never complete 60 miles in 3 days. This was the push I needed. I was meant to meet Mary Beth. I immediately went home and signed up. Over the course of training and fundraising we became extremely close. We shared our work obstacles, talked about our marriages and children all while she was undergoing surgeries, chemo, radiation and reconstruction. She had cancer but she always seemed to be helping me and taking care of others. Her smile, laughter and amazing outlook on life were contagious.

In 2012 we walked together in the Michigan 3-Day. It was absolutely life changing. The tears, laughter, pain and the emotional experience bonded us together FOREVER. After completing the walk, we both decided to crew together the next year.

And how did your and Mary Beth’s 3-Day journeys grow from there?

In early November 2012, I saw a post on Facebook from Mary Beth.

“Well, it looks like I am walking this year.”

I realized this was her way of telling us that the cancer was back. I jumped in my car to be by her side. She was extremely positive and always wanted to be strong for those who were around her. So, Mary Beth and I signed up to walk again, positive that we would walk together for years to come. We trained and spent time watching old movies and laughing. I remember so much laughing ?

In retrospect, she was giving me her story to carry on what she had started.

My dear friend lost her battle with cancer on May 15, 2013, at the age of 39. She supported the Susan G. Komen organization until her dying breath. She was passionate about the cure and believed the research that this organization does will not only find a cure for breast cancer but pave the road to end all cancer. So, I will walk until I no longer am able to.

Mary Beth leaves behind a legacy of walkers who believe in her vision. Her amazing parents have supported me every year with encouragement and very generous donations. They have even donated to my teammates who were struggling to meet their goal.

In addition to Mary Beth, for whom do you walk?

I walk for my teammates and lifelong “Sisters in Walking Bonds” friends.

Andrea S.K., who has walked the 3-Day twice now. Karry C., who has walked with me four consecutive years and her beautiful daughter Lexi, who walked with us for the first time this year.

Colleen S. has also walked with me four times. She was diagnosed a few months prior to our San Diego walk last year, but she scheduled her radiation around the walk and didn’t let it stop her. I am proud to say she is now cancer-free!

I walk for my beautiful sister Lisa, who was diagnosed with breast cancer. She is also cancer-free today. I walk for all those who cannot. There will be a day in our lifetime, a WORLD WITHOUT CANCER.

What are some of your fondest 3-Day memories from years past?

Walking with Mary Beth in 2012 and in 2015 with my best friend since kindergarten to support her mom, who had just been diagnosed. I flew to Dallas, and my husband and son went with me ? Her mom is now cancer-free! And then, of course in 2019, speaking to the 3-Day community about why I started walking for Mary Beth, and raising the flag in her honor.

As a long-time walker, do you have any training tips for new walkers?

Train outside (always!), and train at least 5 miles at a time. Strength training is key, too! It helps with breathing and muscle memory helps with hills.

Any tried and true fundraising tips?

Email your target contributor with the intention of just saying, “I’m walking!” Make it personal and ask if you may send them the link. If you ask instead of just sending, 99 times out of 100 they will ask for it.

What does the word “commitment” mean to you?

Commitment to me, it is a part of my heart. It’s not an obligation. It’s who I am.

Komen Advocacy Summit: What is your story? Will you come share it with Congress?

Guest Blog Post By Sally Dunbar, 3-Day Walker

Hands Up For Hooters, Team Captain

I am a breast cancer warrior. I am also a Political Bozo. Which makes it a bit ironic that I was invited to travel to Washington, D.C. last week to advocate to Congress for breast cancer. Truth be told, I had to look up who my house representatives are. How do you refer to them face to face? And I’m still unclear if D.C. is actually a state! Yeah… a political Bozo — first class.

I wasn’t sure what I could offer the Advocacy Summit last week, or why I got the emailed invitation, but how could I say NO? (For the record, I paid my own way — they do not waste money flying bozos around the country!) I figured I would learn something. I could see our nation’s Capitol. And hey — I could probably recruit for my team! So I went. By way of background, I am team captain of Hands Up For Hooters — a huge Komen 3-Day team that primarily walks in San Diego. This year we also have walkers in Boston, Philadelphia, Seattle and Dallas/Fort Worth. In the past four years, we have raised $660,000 for Komen.

I arrived at the Hyatt on Capitol Hill in D.C. for our first day-long training session on Wednesday, May 1st. There were more than 250 men and women in attendance, including Komen staff, as well as CEO Paula Schneider, and Victoria Wolodzko, Senior Vice President of Komen’s Mission. Throughout the three days, I met many Komen Affiliates from all over the US. I met Komen Advocates Scholars, and Research Scholars. (I didn’t even know what those were before.) I met many women living with metastatic breast cancer who were very moving to hear as well as survivor advocates. I also met many African American women who were specifically invited to help give voice to the black community about breast cancer through Komen’s Speak Truth to Power conference. Oddly, I only met two or three other 3-Dayers. I hear there were 10 registered, but I didn’t meet them. Also, oddly, I met many people who did not know what the 3-Day was! How could that be? Clearly, we need a louder voice!

Thursday our group of more than 250 marched to Capitol Hill. All 13 of us from California met with Senator Dianne Feinstein and Senator Kamala Harris’s office. Then two of us met with my House Representative, Ami Bera, and another group member’s representative, Tom McClintock. Komen had pre-arranged meetings scheduled for us with their Health Legislative Aides for 15 minutes each.

During our meeting on the Hill, we had 4 main “Asks” to request their support of:

To increase research funding to the National Institute of Health (NIH), which includes the National Cancer Institute, from $39B, to $41.5B, despite the president’s proposed budget of a $4.6B decrease. Interestingly 80% of our voters support more money for NIH for Bio Tech research, even if it means raising taxes, because they understand the importance to all of us and our families. This “ask” struck me in that we were advocating for funding ALL health issues, not just breast cancer.
Maintain funding for Early Breast and Cervical Cancer Early Detection (B-CEP) at $275M. This helps low income and under- or un-insured women get early screening and diagnostics before they advance to higher stage cancers.
Co-sponsor a new Komen led bill recently introduced by Representative Debbie Dingell (D-MI), called the Access to Breast Cancer Diagnosis Act, aiming to eliminate the disparity between the out-of-pocket cost of diagnostic imaging and tests. The average patient cost of a mammogram is $231. The average patient cost of an MRI used to further diagnose a suspect mammogram is more than $1,000. How many women will forego the advanced diagnosis because they can’t afford it? This bill will lessen patient out-of-pocket costs, leading to more early diagnosis and more lives saved.
Sign on to the Cancer Drug Parity Act (H.R.1730/S.741) as a co-sponsor. Think about this. You have breast cancer. You need chemo. You go to the clinic for your IV infusion with a $25 copay as this is an office visit and what your treatment will cost. But let’s say there is a newer, better drug for you that comes in pill form. Wow. Easy peasy. No driving to the infusion center. No babysitters. No doctors or technicians involved. No travel. No time off work. You just pop the pill a home. This, however, is paid for under your prescription coverage, which for most of us is a 20% co-pay. My partner on the hill has stage 4 metastatic breast cancer. Her treatment caused peripheral neuropathy which numbed her hands, and ended her career as an OB-GYN. So she has no job. Her current drug co-pay is $120 per month. But when that drug quits working for her, the next step is a drug costing $13,000 a month. Her co-pay will be $3,500 each month. She has a daughter in college and she said if she has to choose between her daughter’s tuition, and one month’s co-pay — well, she is a Mom. She knows what she would choose.

We asked our representatives to support eliminating the disparity between IV and oral chemotherapy treatments, so patients like Kelly don’t have to make these types of decisions.

Honestly, I crammed my head with factoids in preparation for these meetings, yet still felt totally inadequate to speak to these issues. Then a bit of divine intervention arrived in the form of what else? My UBER DRIVER from the airport! “What are you in D.C. for?” she asked. I told her. “Really? I have spent my career conducting advocacy fly-ins for decades. I teach people how to advocate. I am currently a professor of humanities, getting my PHD in… blah blah.” Honestly, I didn’t even understand what her PHD was in. But it was a PHfrikkenD! I asked the obvious — “Whachadoin driving for UBER, Doc?” She replied, “I have to fund my research”.

She gave me two invaluable tips for advocating. “First, don’t wear metal to the Capitol — it sets off the metal detectors.” Check. “Second, forget all the factoids Komen gives you. Just tell your story. And make them cry. THAT is what they will remember.”

So that is what I did. I let my partner explain the details about our asks, as the aides dutifully wrote notes (or maybe finished their morning’s Sudoku puzzle — it was hard to tell). Then I told my story.

“I want to tell you why I paid my own way to come to D.C. from Sacramento to talk to you. 14 years ago I was diagnosed with breast cancer. It scared the begeezus out of me. The doctor didn’t pull my treatment plan out of his hat. It was research from the gazillions of women before me that told my doctors what treatment I should have. And it worked. I am here today. But I learned there was more work to be done because too many men and women are still dying. I started walking and fundraising for Komen, because they were working to end death from breast cancer. I formed my team — Hands Up For Hooters — to walk 20 miles a day, three days in a row in the 3-Day event. To date I have had over 300 men and women join my team and we have raised $660,000 for Komen. We are the hiking boots on the ground in the war on breast cancer, so to speak. I do this so that if I get a recurrence, the research will be there to let my docs know what to do. I also walk for my little grandson. This is something I can do today — advocate for his future — so he never loses his wife, or his second grandmother — ME — to breast cancer. THAT is why I am here.”

Was I effective? Well, I didn’t get them to cry. But I did find out that on both sides of the isle there is broad support for research funding and breast cancer issues, and each of the four aides I met with had their own breast cancer story. Their Mom. Their aunt. Their partner. I feel encouraged about their votes.

After our meetings we delivered a dozen information packets to the House and Senate offices who had no constituents attend the summit. It dawned on me that we would have been so much more powerful had we had summit attendees from EVERY nook and cranny in the US — if EVERY house representative got a visit and every state senator heard our story. But some states had no one. Even my state, California, only had 13 of us from the entire state, yet we have 53 house representatives. We missed most of them!

That is where you come in, Mr. and Ms. 3-Day Walker! Consider coming next year. You are invited. Especially if you are from some podunk, off the beaten track location with a lonely representative who doesn’t get many visitors! They want to hear from you. From US. One thing I kept hearing is how much more impactful a volunteer constituent’s voice is over a paid lobbyist. They value us. They listen. Komen almost doubled the size of the Summit this year, to 250. Their goal is to double again for next year — to 500. We 3-Dayers can do it. And think about it. We have spent tons of time advocating for Komen each time we ask for a donation. We are experienced! We know how to make the ask!!!

I will be there next year. And I will come more prepared. I plan to gather stories from my team, and from my own experiences — stories that support the asks that Komen will decide upon. I hope you are there with me. You won’t regret it.