July Pink Bubble Story of the Month: Beth B.

Beth B.: My Story— 4 Words Plus 1

“A lot can happen in three days” has been running on a continuous loop through my head over this past week. May 12th was my first Mother’s Day without my mom. May 13th was the day phase 2 of treatment began. May 14th was the one-year anniversary of John’s death. It was an incredibly difficult three days for me, exacerbated by radiation burns in my throat which have made it very difficult to swallow and to eat. Thankfully, that has started to ease.

I never wanted to become the story, but when I was originally diagnosed in 2011, I let myself become the story. I thought it was a way to show people what it’s like to have cancer, to live with cancer, and to live beyond a cancer diagnosis. It also lit a fire in me; a fire to fight, survive, and pay it forward. Every. Single. Day. Publicly sharing your story is daunting for many people [but] it is empowering for me. It puts cancer in its place. Everyone [with cancer] has a story [and] if telling my story helps just one person, then it’s worth it. It is all worth it. To anyone facing a cancer diagnosis, tell your story; tell one person, tell a friend, a stranger, tell me, tell ten people, tell 10,000 people… just tell it. Telling your story prevents cancer from being something sacred or secret and puts the power back in your hands. It also introduces you to all us survivors and thrivers. We are here and we can’t wait to meet you.

My original story began on November 4th, 2011, with 4 words, “You have breast cancer.”

“You have a lump.”

“We found something suspicious.”

“You have breast cancer.”

“Lumpectomy, mastectomy, chemo, reconstruction.”

“You are a survivor.”

For the last 12+ years, I have lived my life as a survivor. I went to all my follow-up appointments, followed all the rules, I walked and walked and walked, raised money for the cause, [and] lived my life out loud. But there was always a sword hanging over my head because breast cancer is never truly gone. It hides. It lurks. It may stay hidden, [or] it may burst back into sight. It is a dirty, sneaky beast.

On April 13, 2024, my story became 4 words plus 1, “You have METASTATIC breast cancer.”

“There is no cure.”

“There are treatment options.”

“There are clinical trials.”

“I will fight this.”

“We will fight this.”

“I am a thriver.”

There are an estimated 168,000 women in the US living with metastatic breast cancer (MBC) and the 5-year survival rate continues to improve, thanks to advancements in treatments that help people like me live longer, and with a better quality of life. Kisquali, the drug I started taking last week, was approved by the FDA in 2018. To anyone who questions why I walk, why I have walked since 1997, why I will always walk (including this November in San Diego), why together we have raised close to $250,000, why Susan G. Komen 3-Day® participants have raised close to $1 billion—this is why. The money we raise goes to fund research [which leads] to clinical trials [which leads] to better treatment options. While there currently is no cure for MBC, people are living longer, better lives with the current drug options.

I’m sure you’re asking where I am now.

On May 6th, I completed 10 rounds of radiation to shrink the tumors on my spine. Memorial Sloan Kettering completed blood work which included genetic mapping of my tumors and determined I have no genetic mutations which means I do not qualify for clinical trials. My treatment was transferred up to Albany to my original oncologist and his team. On May 13th, I began phase 2 of treatment which consists of hormone therapy shots of Fulvestrant every three weeks. My current pathology is identical to my original pathology which means this is treated as breast cancer even though it is in my spine, liver and lymph nodes. Kisquali is an oral medication that blocks certain enzymes that feed my cancer which I started this last week. I take three pills a day for 21 days then I get a week off and start all over again. This will continue for the rest of my life or until another protocol is developed. I will also get Prolia injections every three months to strengthen my bones which can be impacted by these medications. This treatment protocol will be so much easier than chemo and with far fewer appointments.

With this diagnosis, I will continue to live my life out loud. I do this for those who don’t want to, or just can’t tell their stories. This diagnosis is so much harder, but I want and need people to know I’m here if they need me. I want people to understand what MBC is and what it means, to see us Thrivers living with this chronic, not terminal, disease; and we will NOT back down.

Father’s Day

In recognition of Father’s Day, we asked 3-Day walker John S., who lost his daughter to breast cancer, to reflect on what being a father means to him and why he thinks supporting Susan G. Komen is so important.

Father’s Day is a day where we as fathers celebrate those incredibly unique and precious relationships with our families and children. As a father who lost a young daughter to metastatic breast cancer, it evokes the fondest of memories, endless thoughts of what could have been while leaving a hole in your heart. No matter the age of a daughter, they are “forever your little girl.” It also demands that you ask yourself what you can do to support the fight against breast cancer and end this disease.

Last year I participated for the first time in the Susan G. Komen 3-Day in San Diego. I initially registered in the summer of 2020, because our sweet daughter Melissa passed away from metastatic breast cancer at the age of 36 the previous year on November 21, 2019. The summer of 2020, we were in the depths of COVID and I was thinking of how I would spend the first anniversary of her passing. I heard of the San Diego 3-Day and coincidentally the Saturday of the event was the first anniversary date of her passing. Melissa had been involved in the fight against breast cancer. She was very impassioned about the cause. I thought it was the perfect way for me to be with my thoughts of her and a way to continue her legacy. The same day I signed up for the event I received a call just hours later to tell me they had to postpone the walk to 2021. As it turns out, the 2021 San Diego 3-Day Closing Ceremony was on the second anniversary of her passing.

Initially, I wanted to walk alone with my thoughts about Melissa in the sea of walkers. As the time drew near, a colleague in California invited me to join a team and I agreed. I joined Sally’s “Hands Up for Hooters” team to walk with others. Earlier this year as part of its 2022 fundraising, this team passed the $1 million cumulative mark! It was the best decision I could have made, as I realized that no one impacted by breast cancer should make the journey alone. I was also honored to speak at the Opening Ceremony about Melissa’s passing, her fight against breast cancer, and taking “Action,” one of the four approaches of Komen. Here’s what I said:

“Two years ago this Sunday, our sweet daughter Melissa passed away at the age of 36 of metastatic breast cancer after a four-year fight. She left behind her husband and two little girls ages 4 and 6. For years, she counseled women going through radiation treatment for breast cancer and served as both a spokesperson and fundraiser in the fight against breast cancer. I commit to do what I can to honor her legacy and continue her plea “that every woman under the age of 40, with a family history of breast cancer, be encouraged and provided an opportunity for a mammogram.” Also, to raise financial support for Susan G. Komen in finding a cure so that no parent will ever have to deliver a eulogy for a daughter dying of this disease.”

Participating in the 3-Day event has been life changing as I am sure it has been or will be for this year’s new participants. To witness the grit and joy of the walkers including survivors, their emotional support network, and the generosity of their donors is truly inspirational. Since signing up for the San Diego 3-Day I have become moved to be more involved with Susan G. Komen by participating in the local walk, fundraising, legislative advocacy, and as a member of the Komen Leadership Council in Central Texas.

Particularly on this Father’s Day, I am grateful as a father for the opportunity to support Susan G. Komen and the 3-Day. It not only helps to keep sweet Melissa’s legacy alive but also supports the survivors and their supporters in their journeys in finding the cures for breast cancer. With that I would like to share a short video about Melissa, being a father of a daughter passing away from breast cancer and why we walk. https://youtu.be/_fc3g0qKZCo

I wish you and yours a Happy Father’s Day and a wonderful 3-Day experience!

Best regards,

John

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®