Breast cancer stories of hope

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Baylor students create art over inspirational breast cancer fight

WACO, TX — Baylor Scott and White McClinton Cancer Center asked Baylor students to create the breast cancer fight through art.

At an event, where they showcased the art, there were doctors and survivors who spoke on the importance of awareness.

The art is to help women believe they are beautiful no matter what. That idea is what kept cancer survivor Karon Lecompte, an assistant Baylor Professor, from letting breast cancer get the best of her.

“Breast cancer is terrifyingly scary, and you need to know through art and music that you are still a beautiful woman,” Lecompte said.

She was diagnosed with breast cancer last year after she went to the doctor. She was originally going to the doctor because of an accident she had working out.

Luckily, they found the cancer, and after chemo, recovery and reconstructive surgery, she is making sure others going through her same battle aren’t left alone.

She says her support system is what helped get her through the tough days.

Lecompte is cancer free, but she still sees the cancer as a battle she hasn’t completely defeated.

“At a five year mark you can relax a little bit but probably for the rest of my life I’ll be concerned about caner re-occurrence,” Lecompte said.

Samantha Raleigh is one of those students. She chose a more clinical depiction because she hasn’t known anyone with breast cancer before this project.

While she was searching online, she came across the clinical depiction of a breast and fell in love with the idea.

“I wanted to communicate through painting the beauty that’s underneath our skin, and it’s horrible that cancer can ruin something beautiful like that,” Raleigh siad.

After working so long on the piece, she was excited to showcase the work alongside her fellow classmates.

“Seeing them all up together was incredible, because each one was so different even though it was all surrounding the same topic, and they all brought a different element to breast cancer awareness,” Raleigh said

Forum: Stage IV/Metastatic Breast Cancer ONLY

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A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

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Inspire Cancer Support Groups–by the numbers

Inspire Cancer Support Groups–by the numbers

  1. 1. CANCER SUPPORT COMMUNITIES INSPIRE (WWW.INSPIRE.COM) IS THE LEADING ONLINE SUPPORT COMMUNITY FOR PEOPLE AFFECTED BY CANCER 75,000Patients and caregivers affected by cancer. *as of May 2013 1.6MOf the 5 million posts made by Inspire members, over 1.6 million were in Inspire’s cancer support groups. Woman, 53, with Stage IV breast cancer “We laugh. We cry, but no matter what, we are there for each other.” 52% Growth rate of amount of members affected by cancer, 2011 to 2012 POSTS MADE BY 2012 MEMBERS IN LUNG 125,000 OVARIAN 110,000 THYROID 64,000 BLADDER 50,000 ADVANCED BREAST 42,000 CERVICAL 25,000 22,500 Number of people who joined at least one Inspire cancer support community in 2012 SAMPLE COMMUNITIESAND MEMBER SIZE (Q3 2013) ADVANCED BREAST 7,500 CERVICAL 13,000 OVARIAN 15,000 LUNG 25,000 Based in Princeton, NJ, Inspire is the patient engagement company. We build and manage online support communities for about 400,000 members, and help industry connect to members for the purpose of research. Find out more at www.corp.inspire.com or by contacting us at [email protected] Follow us on Twitter at www.twitter.com/teaminspire Inspire also has communities for people affected by melanoma, colorectal cancer and prostate cancer.

Abstract P3-10-02: Increasing participation in research – breast cancer (Inspire-BrC)

Abstract

Background: Increasing Black patients’ participation in cancer clinical trials is important because of the population’s lower survival rate. Accrual for Blacks is the lowest of all groups at 0.5-1.5%. Our study aims to increase trial participation rates among Black breast cancer patients by testing the effectiveness of a culturally tailored video intervention on the decision to participate in a clinical trial.

Methods: We hypothesized that the intervention would increase clinical trial enrollment by 6 percentage points compared to our 2012 enrollment baseline of 6% (22/384). Self- identified Black patients with invasive breast cancer at 5 MedStar Hospitals watched a 15′ video about clinical trials, targeting six cultural and attitudinal barriers to participation. The Attitudes and Intention to Enroll in therapeutic clinical Trials (AIET) pre-/post-/follow-up tests with 31 items was used to determine the impact of the video on three domains: actual trial enrollment; likely participation in trials; and attitudes toward trials. The pre-test was conducted at baseline; post-test immediately after video; and follow-up 7-21 days after the intervention. Participants were followed for 6 months to assess trial enrollment status. Descriptive statistics were used to describe study subjects with respect to basic characteristics; means and standard deviations for continuous variables; and frequencies and percentages for categorical variables. Repeated measures analysis of variance was used to examine whether the changes in attitudinal barriers were statistically significant over time. The primary outcome measure was the proportion of Black breast cancer patients who signed consent and/or enrolled in a therapeutic clinical trial.

Conclusion: Study findings show that the video is a promising tool for rapid dissemination of a theory-driven, evidence-based model to enhance clinical trial accrual among Black cancer patients. The video also has the potential to positively change attitudes about clinical trial participation.

The study was supported by the Breast Cancer Research Foundation.

The Best Breast Cancer Blogs of 2019

With roughly one in eight women developing breast cancer in their lifetime, the odds are good that nearly everyone is affected by this disease in some way. Whether it’s a personal diagnosis or that of a loved one, finding answers to your questions and a supportive community of people who understand the experience can make all the difference. This year, we’re honoring breast cancer blogs that educate, inspire, and empower their readers.

Living Beyond Breast Cancer

This national nonprofit organization was created by and for women living with breast cancer and is committed to helping those impacted by the disease. With comprehensive information (medically reviewed) and multiple methods of support, this is a great place to find answers, insights, and experiences. On the blog, advocates and breast cancer survivors share personal stories on everything from cold caps to art therapy, while the Learn section takes you through every detail from diagnosis to treatment and beyond.

I Hart Ericka

Ericka Hart is a cancer warrior, sex educator, speaker, and activist working to challenge medical racism and ingrained cultural modes and attitudes about illness. When she was diagnosed with bilateral breast cancer, she realized that her treatment failed to address both her identity and her sex life. Now, Ericka is leading the charge in changing this for other young QTPOC (queer and trans people of color) cancer patients and survivors.

My Cancer Chic

Anna is a young breast cancer survivor. When she was diagnosed at just 27, she struggled to find other young women going through the same experience. Her blog became a place to share not just her cancer story, but her passion for all things style and beauty. Now, three years into remission, she continues to inspire young women through wellness, positivity, style, and self-love.

Let Life Happen

Two-time breast cancer and domestic abuse survivor Barbara Jacoby is on a patient advocacy mission, and her Let Life Happen website is a wonderful place to find inspiration through news and personal stories. Browse a great mix of breast cancer information, advocacy guidance, and tips for taking control of your patient experience, plus Barbara’s own experiences from diagnosis to remission.

Journeying Beyond Breast Cancer

Finding support for follow-up care after cancer treatment can be challenging. For Marie Ennis-O’Connor, it wasn’t until her final day of treatment that her breast cancer diagnosis and its aftermath really hit. That’s when she felt cut adrift. To help make sense of the experience of cancer, she began her blog. It was a place to discuss the post-treatment limbo she was experiencing, and today, it serves as a great resource for women who find themselves in the same spot.

Breast Cancer Care

Breast Cancer Care is a community of nurses, volunteers, and people affected by breast cancer in the United Kingdom. Together, they work to ensure that everyone who is diagnosed with this disease gets the support they need and deserve. Through education and support groups, the group is making important information accessible, while also ensuring a truly vital level of emotional support.

Rethink Breast Cancer

A resource specifically for young women with breast cancer, this organization understands the multiple age-specific issues at hand. From fertility, diagnosis during pregnancy, childcare, careers, and financial security, Rethink Breast Cancer understands the complexities of cancer at this stage in life. They work to connect young women navigating the same experience and offer age-appropriate support and resources.

Breast Cancer? But Doctor… I Hate Pink!

Ann Silberman is here for anyone who needs to talk to someone with personal experience as a breast cancer patient. She’s candid about her own journey with stage 4 metastatic breast cancer, from suspicion to diagnosis to treatment and beyond. In spite of it all, she’s sharing her story with humor and grace.

Nancy’s Point

Nancy Stordahl’s life has been irrevocably altered by breast cancer. In 2008, her mother died from this disease. Two years later, Nancy was diagnosed. On her blog, she writes candidly about her experiences, including loss and advocacy, and she refuses to sugarcoat her words.

MD Anderson Cancerwise

The MD Anderson Cancer Center’s Cancerwise blog is a comprehensive resource for cancer patients and survivors of all kinds. Browse first-person stories and posts from healthcare professionals, plus information about everything from treatment and survivorship to side effects, clinical trials, and cancer recurrence.

Sharsheret

Sharsheret is a Hebrew word for chain, a powerful symbol for this organization that seeks to provide support to Jewish women and families facing breast and ovarian cancers. Fortunately, their information is available to everyone. From personal stories to an “ask the expert” series, there’s a wealth of information here that’s both inspiring and informative.

The Breast Cancer Charities of America

This organization is helping women with breast cancer by broadening the perspective to include life outside of treatment. In addition to information about navigating the breast cancer journey, the site features posts related to general wellness, fitness, style, nutrition, and inspiration.

The Breast Cancer Society of Canada Blog

For expert information about the latest research, treatments, medical breakthroughs, and clinical trials, The Breast Cancer Society of Canada is a great resource. On the blog, visitors can also read stories from researchers and survivors alike. The profiles of researchers fighting to find a cure are incredibly inspiring, as are the first-person narratives from the fearless women battling the disease.

Breast Cancer Now

The UK’s largest breast cancer charity believes breast cancer is at a tipping point, with higher survival rates than ever before, but more diagnoses as well. Breast Cancer Now is dedicated to funding important breast cancer research to help eliminate this disease. Readers will find medical news, fundraising activities, research, and personal stories on the blog.

Some Girls Prefer Carnations

Nicole is a microbiologist, wife, mother of two, and a survivor of inflammatory breast cancer. On her blog, she writes candidly about her aggressive treatment and recovery, and the many ups and downs of her journey. In spite of her health issues, Nicole is always looking for the silver lining and serves as a truly inspiring role model.

Breast Cancer Research Foundation

Dubbed The Progress Report, the blog of The Breast Cancer Research Foundation is a great place to stay current with the community. Latest news shared here includes science coverage and fundraising spotlights.

I’m Taking Charge

Feeling powerless is common for those diagnosed with breast cancer. This blog understands that, and is working to empower every woman to take back what cancer stole. With comprehensive information relating to breast reconstruction and advice for finding your new normal, plus survivorship stories, news, legislation, and activism, this is a wonderful resource for regaining a sense of control and comfort in your own body.

Cancer Network

The Cancer Network is a valuable resource for anyone interested in specific information about current breast cancer treatments, therapies, clinical trials, and studies. Posts are written by medical professionals, which makes this information more on the technical side.

Breast Cancer News

In addition to current news and research about breast cancer, Breast Cancer News offers columns like A Lump in the Road. Written by Nancy Brier, the column shares Nancy’s personal experience with triple negative breast cancer and chronicles the fears, issues, and challenges she’s facing.

Worldwide Breast Cancer

Worldwide Breast Cancer is a nonprofit working to change the picture of breast cancer around the world. The organization’s creative “Know Your Lemons” materials are working to overcome taboo, fear, and literacy issues, while also educating women across the globe about breast health. On the blog, readers will find personal stories, tips for effective self-exams and first mammograms, information about the organization’s breast health app, current news and advocacy efforts, and much more.

If you have a favorite blog you’d like to nominate, please email us at [email protected]

Jessica Timmons has been a writer and editor for more than 10 years. She writes, edits, and consults for a great group of steady and growing clients as a work-at-home mom of four, squeezing in a side gig as a fitness co-director for a martial arts academy.

Most Inspiring Cancer Survivor Stories from 2016

Every cancer survivor has a unique story to tell. Cancer survivor stories help inspire other patients going through treatment to stay positive. Here are a few of the most inspiring cancer survivor stories from 2016.

2016 Inspirational Cancer Stories

Lynda P.

Lynda was diagnosed with breast cancer for the first time in 2011. Last year, after five years with no sign of disease, she was diagnosed with a completely different type of breast cancer. Lynda and her family took control of her diagnosis and beat it with aggressive cancer treatment and the support from Dr. Heather Allen, medical oncologist, Dr. Michael Anderson, radiation oncologist, and Dr. Margaret Terhar, breast surgeon from Comprehensive Cancer Centers of Nevada.

To show her friends and family that she is a true fighter, and won’t let cancer define her, Lynda ran the Susan G Komen Race for the Cure in May during treatment. Here at Comprehensive, we are honored to be able to help Lynda to keep running.

Guy C.

Guy was first diagnosed with kidney cancer in 2010. He underwent surgery to remove the tumor.. In 2012 the cancer came back. He saw Dr. Nicholas Vogelzang, medical oncologist, and was diagnosed with stage IV kidney cancer that metastasized to his femur. Chemotherapy successfully treated the cancer for two and a half years, but when it came back in 2015, chemotherapy didn’t have the same positive effect.

Dr. Vogelzang offered Guy a form of cancer treatment called immunotherapy, which uses the body’s own immune system to attack the cancer cells. Guy receives treatment once every two weeks. Guy states, “I feel so lucky to have lived as long as I have because statistically, I should not be here today. I have Dr. Vogelzang and his team to thank for that.” At Comprehensive Cancer Centers, we feel that we are the lucky ones to be able to treat Guy and help him continue to spend quality time with his family and friends.

Lysa B.

When Lysa turned 40, she started experiencing such severe back pain that it landed her in a local hospital. Doctors discovered she had Stage IV lung cancer that had metastasized to her spine, ribs and pelvis. She immediately began an aggressive cancer treatment plan that included three surgeries, 10 radiation treatment cycles, and five months of chemotherapy.

It wasn’t until January 2013 that Lysa met Dr. Nicholas Vogelzang, medical oncologist. By that time, 16 new tumors had developed in her lungs and her condition was getting worse. Dr. Vogelzang expedited the cancer testing process and found a gene mutation that affects less than one percent of those diagnosed with lung cancer. With this discovery, she was eligible for a targeted therapy drug called Xalkori, commercially known as Crizotinib. After just three months of treatment on Crizotinib, her scans showed significant improvement. Six months into treatment with Dr. Vogelzang, there was no sign of the disease in Lysa’s body.

Today, more than five years after her initial diagnosis, Lysa is still in remission. She volunteers with the American Lung Association and helps raise money for cancer research. Lysa states, “thanks to pure strength and incredible advancements in the treatment of lung cancer, me and so many others are looking ahead to the next five years and well beyond.” The staff at Comprehensive Cancer Centers is proud to be a part of Lysa’s treatment and recovery.

Discover More Cancer Stories of Hope

Cancer affects all of our lives, but more people survive and live to share their stories than ever before. The doctors and professionals as Comprehensive Cancer Centers of Nevada, an award-winning Nevada oncology group, dedicate their careers to helping people fight and beat cancer every day. Visit our website at www.cccnevada.com/patient-stories to read more of these inspiring cancer survivor stories. If you or a loved one has been diagnosed with cancer, call 702-952-3350 to schedule an appointment.

After receiving the diagnosis every woman fears, these breast cancer survivors – interviewed originally by The Tribune-Democrat in 2017 – now say they are doing well and through their treatments and embracing life.

When Allie Marguccio was diagnosed with breast cancer, she went through a stage of mourning.

“I didn’t want to talk to anyone about it,” the Indiana County woman said.

But thanks to some good advice, Marguccio said she ignored that impulse.

“Don’t be afraid to tell everyone what you’re going through, because you’ll need all of the friends and family you can find to be in your corner for this,” she said. “I’ve had a world of support.”

A routine mammogram uncovered a tumor in late 2016.

Marguccio underwent a lumpectomy, followed by 24 weeks of chemotherapy.

Today, she said she’s doing great.

“I’ve had two mammograms so far, and both came back clear,” Marguccio said. “Other than a few lingering side effects, I’m doing fine.”

She added that every six months for two years she’ll follow up with mammograms and once a year with the oncologist.

“My prognosis was good from the start, so I’m hopeful that it will continue to be that way,” Marguccio said.

She said the best advice she can give to other women who have been diagnosed with breast cancer is to find yourself a support system.

“That’s what got me through it,” Marguccio said. “People were cheering me on, and that gave me something to hang on to because it’s easy to go inward and feel sorry for yourself.”

No time to procrastinate

In 2015, Shelly Berkebile was diagnosed with breast cancer.

The struggle she went through in fighting the disease made her realize the importance of taking advantage of the time she had.

“Things that you put off, now you think ‘I guess I shouldn’t put this off any more,’ ” the Windber woman said.

Her treatment included a double mastectomy, undergoing chemotherapy and having her ovaries removed.

“Before I went through cancer, I didn’t realize how long cancer would affect you or to what degree it would affect you,” Berkebile said.

Her long-term treatment includes yearly CAT scans and a estrogen blocker medication for the next four years.

But she said she’s feeling good, and in the past year her energy has picked up.

“I turned 50 in August, so that was a big milestone,” Berkebile said.

She said she gives God all the glory for her recovery.

“It’s a long road, but it’s doable,” Berkebile said. “It may seem like it’s never going to end, but things do get better.”

‘You have to rise above it’

It was in 2015 when Natalie Lyons noticed a tender spot on her breast that she brushed off as a pulled muscle until the problem persisted months later.

“I said nothing to no one,” the Somerset woman said.

Eventually, she had a mammogram that was followed by a biopsy. The news was cancer.

“I just sat on the back porch and cried hysterically,” Lyons said. “But I never asked God, ‘Why me? Because I know what God brings us to, he brings us through.”

Her treatment consisted of six double rounds of chemotherapy, a lumpectomy, 33 rounds of radiation and 16 maintenance chemotherapy treatments.

But she said she’s feeling good. The “chemo brain” – a term used to describe thinking and memory problems that can occur after cancer treatment – has subsided and her energy has slowly been returning.

“As of May, I am cancer-free,” Lyons said. “I’ll go for a mammogram in October and probably a CT scan.”

Her advice to women diagnosed with breast cancer is to “keep your faith and keep your focus with humor.”

“You can’t let it overwhelm you, and you can’t let it define you. You have to rise above it,” Lyons said. “Support is the best, so keep your support team close by. My family, my friends and my relationship with Christ has been my silver lining in my journey.”

‘You’ve got to have a positive attitude’

Work didn’t stop for Sharon Judd during her battle with breast cancer. The Duncansville resident never missed a day of work at Growing In Faith Together Learning Center, in Roaring Spring, Blair County.

“I figured that I had it, I wanted rid of it, and life goes on,” Judd said.

Life quickly changed for Judd after witnessing the father of one of the children at the learning center suffer a massive stroke. Seeing the man, who was in his early 30s, going through such a traumatic ordeal was a wake-up call for Judd. She immediately made an appointment with her doctor to schedule a mammogram.

“That’s when they found the mass,” she said.

Judd endured 20 daily radiation treatments following her surgery last June and was then prescribed Anastrozole, which she will be required to take for the next 10 years. The medication is used to treat breast cancer in women who have gone through menopause.

“I’m still taking the medication,” Judd said. “One year down, so nine more years.”

Judd recently went for her checkup mammogram and said that everything came back fine.

As a result, she can now lessen her visits to her radiation doctor and medical oncologist.

Judd, who still busies herself working, said keeping a positive attitude really helped her get through the tough times.

“It’s just nice to have a support system, but you’ve got to have a positive attitude,” she said.

She also stresses the importance for women to get mammograms.

“Make sure you get your mammograms,” she said. “It saves lives.”

‘If you don’t laugh, you’ll cry, right?’

Keeping a sense of humor was a little tactic that made a big difference for Theresa (Voytko) Lehman during her bout with cancer.

The Johnstown native wore funny shirts with the messages “nothing to see here” after her double mastectomy two years ago, and “under construction” during her ongoing breast reconstruction procedures.

“It’s things like that that just keep me laughing,” Lehman said. “If you don’t laugh, you’ll cry, right?”

Lehman, who has been connected to the Joyce Murtha Breast Care Center since its inception, was diagnosed with breast cancer in late 2016.

Years before her battle with the disease, she spent several years working with U.S. Rep. John Murtha, who, along with his wife, Joyce Murtha, brought national attention to the issue of breast cancer through their efforts in the Johnstown and Washington, D.C., regions.

Following her diagnosis in 2016, Lehman underwent a double mastectomy that left her cancer-free. However, while her battle with the disease was over, her journey was far from being finished.

Issues with her breast reconstruction have required multiple surgeries since her double mastectomy. Lehman has undergone a total of nine surgeries – with five of them occurring since she last spoke with The Tribune-Democrat just one year ago.

“I’ll be going back into surgery on November 6th, for hopefully my 10th and final one,” said Lehman, who has lived in Arizona since 2010.

Due to infection and a series of issues, Lehman underwent an extensive procedure in May at the Mayo Clinic’s Arizona campus.

“I had to have breast expanders in, and my body wouldn’t take the expanders, so it wouldn’t take the implants either,” she said. “So it had pretty much come down to the choice of losing my breasts or I could have tried the DIEP procedure – where they literally took fat from my stomach and gave me a breast back on my left side.

“It’s pretty fantastic, actually,” she said. “Pretty soon I’m not going to be able to wear the shirt that says ‘Nothing to see here’ anymore. So that makes me feel good.”

Lehman’s spirits are flying high as her journey nears its end. “Now that I can see the light at the end of the tunnel, I’m like ‘Don’t do anything to screw this up. You’re almost at the end here,’ ” she said “And that keeps me grounded and keeps my mind focused.”

The importance of check-ups

Johnstown resident Marie Amistadi was surprised to learn she had breast cancer in 2016.

However, while the diagnosis was shocking, she knew that she wasn’t the first in her family to develop the disease. Her mother and cousin both died from it, which led her to suspect that genetics may be the link between the illness and her family.

“I thought, ‘Is something going on here? Should I be tested?’ ” she said.

Through testing Amistadi later found that she has a mutation in the BRCA2 gene that increases the risk that she’ll develop breast cancer.

Just nine months prior to her diagnosis, Amistadi also suffered a stroke that completely disabled the left side of her body.

A few months after that, she was stricken with Bell’s palsy, a type of facial paralysis that weakens the muscles on one side of the face, causing them to droop or stiffen. As a result, treating Amistadi’s cancer became a challenge.

While she underwent a hysterectomy, her doctors said they couldn’t perform a mastectomy or put her on the medications that most other breast cancer patients take.

Twenty radiation treatments later, Amistadi is fully recovered and cancer-free.

“Everything is going real good,” she said. “I just saw Dr. (Ibrahim) Sbeiten, and everything looks good. I’m doing fine.”

Amistadi described her surgeon, Dr. Gerard Garguilo, as a “wonderful doctor.” Garguilo retired at the end of 2017.

“I don’t know who the new doctor is coming in to take over for Garguilo, but I will see her in October,” she said. “I hope she is as good as Dr. Garguilo.”

Amistadi’s advice to other women is to not shy away from mammograms and checkups.

“I’ve always gone for my checkups, and I never thought it would happen to me,” she said. “If I wouldn’t have gone for my checkup, I wouldn’t have known.”

‘Kind of taken aback, in complete shock’

Kylie Myers was never one to go see a doctor regularly, but when a discharge from her left nipple continued to occur in 2016, she knew it was time to make an appointment.

The results of an ultrasound later revealed that Myers had what appeared to be the early stage of breast cancer.

“I was kind of taken aback, in complete shock,” Myers said.

Myers, a Cresson resident, hoped the results were wrong, but a biopsy showed that she had DCIS, which is the presence of abnormal cells inside a milk duct in the breast – a noninvasive form of breast cancer.

Adding to Myers’ troubles was the fact that she was triple negative, which meant no hormone treatment would work to combat the cancer. She was then left with two options: radiation or mastectomy.

Myers ultimately decided to move forward with a bilateral mastectomy. The surgery would eliminate any chance of getting cancer in her right breast and cosmetically it would look better, she said.

Today, Myers is cancer-free and thankful for the ongoing support.

“I’ve been cleared of everything,” Myers said. “I’ve had a couple follow-ups. All of my surgeries have taken place, and I’ve healed. So it’s back to work now, finally. Everything has been good so far.”

Myers continues to visit with Dr. Deborah Sims every six months at the Joyce Murtha Breast Care Center in Windber.

“You get nervous every time you go back for an appointment, because you’re never in the clear 100 percent with everything, but you still have to make sure you get follow-ups and keep on top of everything,” Myers said.

With everything that Myers went through in the past two years, she was still able to find a positive takeaway.

“When you experience something like that it makes things more clear about what’s really important in life,” she said. “And how many people are always there to step up when needed.”