Happy Halloween from the 3-Day Awarewolves

What’s that? Do you hear that howling? Is it Halloween? Or is it…The Awarewolves?!

This amazing team is a staple on the 3-Day, and their costumes keep them Halloween-ready all year long! They walked with us in New England in September, but their 3-Day journey began long before that. It began when Linda Lafragiola was diagnosed with breast cancer in 2011, when she and her sister Kathi Elliot decided that breast cancer would not beat them.

Linda explains, “Since being diagnosed, I decided to raise awareness about early detection and how important it is. Participating in the 3-Day allows me to share my story and experiences with any and everybody, year-round.”

What began as a promise, and a walk, between two sisters, has now grown to a whole team! That team includes their very own Awarewolf, Kathi’s beautiful Siberian Husky, Nika. Nika joined many of Linda and Kathi’s early training walks and quickly became their mascot.

After one of those such walks, the sisters started sharing possible team names with Kathi’s husband, David and her daughter Paige. They were talking about how everyone on the walks jokingly asks if Nika is a wolf, and right on cue, David began singing “Werewolves of London.” Suddenly, the group was singing “Werewolves in San Diego” instead, in honor of their upcoming walk in California.

From there, they all talked about how their team mission was about awareness and early detection, in honor of Linda’s own early diagnosis. So, David came up with AwareWolves. Paige created the team logo. Kathi coined the tagline, “Don’t be afraid — Early detection saves lives”. Linda found the amazing hot pink wolf ears. But they each came up with their own signature howls! And from there, a team was born.

More of how their story and team began, in Kathi’s own words…

“Linda learned that she had breast cancer in 2011. Fortunately, it was an early diagnosis and the cancer was limited to a small tumor. She underwent surgery that summer, followed by six weeks of radiation.

Mid-way through her treatment a friend asked Linda to join her at the Susan G. Komen 3-Day in San Francisco in June 2012. She thought, ‘60 miles in 3 days…if I can survive breast cancer then I can do that!’

As a sister of someone who is going through something like breast cancer, you try to find ways to be helpful. Driving Linda to radiation appointments was something I could do. When Linda said she was walking, I said, ‘Why not me too?!’ From then on, the drives to radiation became a time to plan fundraisers and future training walks.

Linda’s last radiation appointment was on November 1, 2011 and the next morning, we laced up our sneakers and started training. Several months later, we had logged more than 1,000 miles and raised over $5,000 dollars each – enough for two 3-Day walks. So, we decided to register for the San Diego 3-Day in November 2012, as well.

Clearly walking 60 miles is no small feat, especially factoring in inclement weather and hilly terrain, but any 3-Day participant will tell you that the aches, pains and blisters are worth it.

Linda says her first 3-Day in San Francisco was emotional, inspiring and eye opening. It really hit home.

She told me, ‘I met so many women and men whose lives had been touched by breast cancer. It was mind boggling! It helped me to go from feeling like a victim — saying why did this happen to me? — to actually doing something about it.’

Not long after completing our second 3-Day in San Francisco, Linda and I officially started our team, cleverly named…The AwareWolves.”

But that was only the beginning of so many amazing memories for their team and their sisterhood!

Since then, they have walked in nearly ten 3-Days in different cities, and their team has only grown in number and recognition!

“The AwareWolves pack has grown, just by the people we have met along our journey,” explains Linda. “Some of them are veteran 3-Day walkers and crew members. Some are first-time walkers who have joined us to see what it’s all about. Everyone loves our signature ears and I swear some people have joined just to rock the ears and howl with the pack! 😄 And, we’re ok with that! Our team is made up of people from all over the US and although we walk at different speeds, we know we are there for each other. 💕 We are known for taking our time, enjoying the event and everything that comes with being in the pink bubble.”

Though in the past the Awarewolves have been in that pink bubble for a few Halloween weekend walks, this year Linda will be part of a group costume, which is a Pac-Man theme, instead!

She and Kathi are gearing up to walk in San Diego in November, and even though Halloween might be in the rearview mirror at that point, you can expect some AwareWolves on the San Diego 3-Day trails. Just keep a pink ear perked up for their howl!

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®

From Sidewalks to Science: An On-Route Look at Komen’s Research with Dr. Maria Soledad Sosa

Opening Ceremonies

Dr. Sosa, can you tell us a bit about what led you to do breast cancer research?

My mom was diagnosed with ER+ breast cancer 18 years ago. Two years ago, her cancer returned and she needed a second round of treatment. Fortunately, she is doing well. My personal experience with this disease greatly impacted my decision to work in this field, and inspires me every day as I work to make an impact in breast cancer research.

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On the Route

Since we’ve got some time, could you tell us a bit about your current research?

Metastasis (or the spread of breast cancer to other organs) is what kills people with breast cancer. My research is aimed to avoid metastasis before it even begins by targeting the “seeds” of those metastases. These seeds are named DCC (disseminated cancer cells) and are “asleep” in the body, and can be found in important organs like the liver and bones even before a primary tumor is detected. But something causes them to wake up and become aggressive. I believe if we can figure out how these DCCs behave and spread, we might find strategies to eliminate them before they reactivate and form metastases.

At Camp

Now that we’ve made it “home” for the night and are enjoying the support of our crew, can you tell us about how your work would be affected without Komen funding?

Komen funding is imperative to my research. With Komen’s support, I can look for ways to keep these dangerous DCCs “asleep” so they can’t grow and become metastatic tumors. It also allows us to find ways to eliminate DCCs while sleeping. My hope is that this work could someday lead to a cure for metastatic breast cancer.

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Day 2

What would you say to somebody who’s just been diagnosed with breast cancer?

My advice to people would be to have hope and be diligent about your own care. People with no sign of breast cancer should continue to follow-up with their doctor, follow the doctor’s recommendations, and continue to get screened every six to 12 months after treatment has stopped. It was a follow-up screening that helped my mom detect her breast cancer recurrence early. Typically, after a person is treated for breast cancer they are considered to have no sign of breast cancer. However, some people may have DCCs in vital organs that are “asleep.” They could stay like that for years — even decades in the case of ER+ BRCA patients — so it’s important to understand that risk and be proactive about screening. Early detection and follow-up could save the life of a person with no evidence of disease.

Cheering Station

Look at all of these enthusiastic supporters out along the route! Tell us about how you are involved with Komen outside of the lab.

I’m excited to be one of four Komen-funded grantees selected for the Metastatic Breast Cancer (MBC) Research Grant crowdfunding opportunity, where anyone can donate funds to support a research project or researcher of their choice. You can learn more about my story on the Komen Facebook page and donate directly to my Komen-funded MBC research project here!

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Closing Ceremonies

Thanks for walking with us, Dr. Sosa. One final question, in working with patient advocates, how have they impacted your research by bringing the patient perspective?

Sandra Spivey is the patient advocate for my grant, and was so helpful in developing the Letter of Intent and grant proposal. She is very supportive, giving me feedback on how to highlight the patient perspective. I was amazed by her energy and passion. Even when she got sick, she kept working and sending me comments for this grant. I really appreciate all her help, and I am sure she will have a positive impact on my research.

Dr. Maria Sosa is an Assistant Professor at Icahn School of Medicine at Mount Sinai and you can donate to her research project directly through Komen’s crowd funding web page. Since 1982, Susan G. Komen has funded $956 million in breast cancer research, second only to the U.S. government and more than any other nonprofit in the world. Learn more here.

Pit Stop

Three things to know about Dr. Sosa:

  1. I like dancing. And as an Argentinean woman, I dance tango!
  2. In my free time, I love to paint
  3. My family enjoys being outside and being active — doing things like hiking, kayaking, and swimming.

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Grab and Go

Here are three ways you can use this information to help reach your 3-Day fundraising or recruiting goals:

Sample Tweet:

Having seen the effects of breast cancer in her own family, Dr. Maria Soledad Sosa is now conducting research aimed to avoid breast cancer metastasis before it even begins! Learn more about her research here:

Sample Facebook Post:

Having seen the effects of breast cancer in her own family, Dr. Maria Soledad Sosa is now conducting research aimed to avoid breast cancer metastasis before it even begins! Komen funding has been imperative to her research, and she hopes to one day find the cure for metastatic breast cancer! Learn more about her work here: