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Managing your New Normal with these Social Distancing Ideas

Hey ANGELS, it’s Patricia Fox, the Pink Sistah. This is a care check to see how you all are coping with COVID-19 and social distancing.

In addition to social distancing and curfews, I have been made aware that even more precautions have been implemented for some ANGELS overcoming the dis-ease called cancer. According to a letter I got from my oncologist on MyChart, visitors are restricted from accompanying us during our recovery in hospitals and even while in treatment. This has been initiated to reduce risk of those with compromised immune systems from being infected by the virus.

Young Survival Coalition – Breast Cancer Is – Philadelphia – July 2019

However, us ANGELS know all about new normals, be it temporary or life long. We are tenacious and resilient, and this temporary new set of changes is no different. Here are a few ideas to try while living through social distancing.

Stay Connected! Although social distancing is suggested to be 6 feet from each other, and there is a strong urge to stay indoors, we can still connect with friends and loved ones intimately. We now have the time to call the distant relative we’ve had good intentions on calling for some time now. Video chatting, via Facetime or Facebook Messenger, is another way to connect with loved ones and not feel so isolated – be it at home or in treatment. Also, try virtual support groups to remain engaged and in connection with others. 

Read! Now is the time to catch up on some good reads, or begin a new book. It is especially helpful to choose a read that is empowering or nurtures your spirit and imagination with positivity. You can also connect with others by reading. Creating book challenges and planning group discussions is a way to encourage connection with others.

Do Something New! The busyness of life often has us to forget projects we left unfinished, or plans we mapped and never began. We may even have talents patiently waiting within us to be explored. We now have the time to finish or begin, and discover or sharpen these endless possibilities. Is there a book you wanted to write or a painting waiting? Or maybe even a business plan that turns from side hustle to success never before imagined? With this time, we can afford to explore all the above and more!

Beauty time! As an ANGEL who loves beauty,  I must share that now is the time to get into all things beauty. Be it browsing the Sephora App to view the latest trends or using their Virtual Artist, to watching product reviews and tutorials – now is the time. It’s time to sort your good makeup from your expired products. Take inventory of what’s missing in your beauty routine, or what you’d like to try that’s new. Most importantly, clean your tools! So brushes, beauty blenders, mask spatulas and whatever else you may have in your beauty arsenal.

Be Present! My best recommendation is to remain present. The virus is not something we can control, nor the laws to follow. However, we can choose to remain present where we are. In this exact moment. That we are still living, breathing, safe, warm, clean are only a few things to consider to keep us grounded. Give thanks for every activity of the day. Preparing dinner? Give thanks for this moment. Resting? Give thanks for this moment. Taking a moment to read this blog? Give thanks for this moment. Gratitude will help fade out worry. This mindfulness of appreciation for all things in the moment will help keep us present. We are blessed!

This is temporary, ANGELS! In the meantime, be well, be encouraged and encourage someone.

Written by Patricia Fox, Tigerlily ANGEL Advocate

Coping with MBC during the Covid-19 Pandemic

As I enter the second week of the corona virus/covid-19, the world around me is growing more isolated by the day. I am a 42 year old MBC patient in active treatment. When I started this life-saving treatment I knew all of the side-effects that came with chemotherapy. It seemed like the risks were worth it to remain alive. Most cancer patients have to learn to be ok with being at risk for all kinds things. Being immune compromised is the first thing we are told about and have to learn to manage all interactions with the outside world. Any germ or cold that is mild in the population can be severe or deadly to cancer patients.

So here I am in the midst of balancing my desire to be normal with the additional constraints COVID-19 has placed on my life and trying not to go crazy inside my house. The spring and summer are my peak times to be outside; I get so much joy in the sun and any activity that gets me out the house. Being inside my house 22 hours a day is getting old already. My normal has been to workout a minimum of three times a week. I love the gym; I can lose myself in pushing my body to its physical limits. I can’t control my diagnosis but I sure can control the weights or cardio equipment.

As more information was given about the transmission of COVID-19 and the at risk populations were identified, I had to heed common sense, medical professionals and the advice of friends. I decided to practice social distancing which majorly disrupted my gym routine. I started working out every other day as was my routine but as each day passed I was getting more anxious and restless. I tried to watch TV or read but I just couldn’t focus. Working out usually brings me so much joy that I thought “hmm… workout more”. Every other day workouts became daily workouts sometime twice a day workouts. Finally, I started to feel better.

Studies do show that being physically active helps to mitigate some of the side effects of treatment and I have found this to be true for me both during my early stage diagnosis and now as an MBC patient. Every person is different so please check with your physician before starting any workout plan. Another benefit of working out is that it also releases endorphins in the body. Endorphins are hormones that relieve stress and pain. I don’t know about you but I will take all the natural happiness I can get.

While it’s still early in the Covid-19 pandemic, making sure I incorporate some type of physical activity every day is the best coping mechanism for me. Be safe and WASH YOUR HANDS!!!

Written by Chawnte’ Randall, Tigerlily MBC Disparities ANGEL Advocate

#StayHome with Shonte Drakeford, MBC ANGEL Advocate

During this time of uncertainty with the current COVID-19 outbreak, we want to remind you that we at Tigerlily Foundation care about you and your families physical, emotional, mental and spiritual health. Our goal is to offer you information, virtually, that will help you better understand breast cancer, to know rights as a patient and to learn how to get more involved in using you time and voices to make an impact.

As a breast cancer patient, you are among those who are at high risk of serious illness from COVID-19 because your immune system may have been weakened by cancer and its treatments such as immunotherapy and chemotherapy. Further, as a metastatic breast cancer patient whose cancer has spread to the lungs, you can experience significant complications with COVID-19, as this will be an additional stress for your already vulnerable lung.

Another way the COVID-19 pandemic may impact you is that some hospitals and healthcare facilities are delaying or cancelling procedures that are not urgent, emergencies or life-threatening. As such, your cancer screening, surgery or treatment may be rescheduled or delayed. If this is happening to you, know that you are not alone. Speak with your healthcare team about the best way to proceed with your care in this challenging situation.

We are proud of our ANGEL Advocates who are leading through example as we mobilize nationally and globally to #StayHome. MBC ANGEL Advocate Shonte Drakeford took the time to share how she is moving through this COVID.

Here is what she is up to:

Doing virtual workouts with my trainer, cleaning the house, playing with my dogs, tackling tasks I need to complete, chatting with all my friends on Marco Polo app. Gardening about to build my grow beds, spending time with my chickens, eating!!! Walking outside because it’s getting warmer now, playing video games, binging TV shows, listening to music!! Maybe this weekend I’ll clean my car. Oh so many things.

I am a Nurse Practitioner so I am working but since I’m high risk I’m doing telemedicine, I have treatment in two weeks so we shall see how that goes.

All besides freaking out, I’m informed and sane. Can’t worry about things I cannot control…just like the Cancer I have. Still enjoying my life, just another modification to which how’s it done.

-MBC ANGEL Advocate Shonte Drakeford

We encourage our breast cancer community to #StayHome and to only go out for essentials, or if available have a caregiver help with buying groceries, picking up medicine and other essential goods.

Currently, there are no specific precautions to prevent the spread of COVID-19 among people with cancer or their caregivers. However, to avoid being exposed to the coronavirus, it is recommended that everyone:

· Avoid close contact with people who are sick.

· Avoid touching your eyes, nose, and mouth.

· Stay home and practice social distancing.

· Cover your cough or sneeze with a tissue, then throw the tissue in the trash.

· Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.

· Wash your hands often with soap and water for at least 20 seconds.

The Center for Disease Control (CDC) has the latest information on the coronavirus on their website.

Something is wrong: An unlikely diagnosis

“Something is wrong,” I said to my mom on the phone, standing in front of the bathroom mirror. 

While my left breast had felt heavy and painful for several weeks, wearing a striped tank top it was obvious it was also rather swollen. 

I took off my shirt and began to work my fingers in a circular motion around my breast. It was tender, sections were hard and upon caressing the bottom, yellow discharge expelled.

Yes, something was wrong. 

A trip to the hospital resulted in a quick dismissal. I didn’t fit their profile. I was “too young.” They did not feel a lump. My breast was not red. 

“We don’t do breast screenings in the ER,” they said. “Talk to your primary care doctor.”

What came next was a mammogram, an ultrasound, a negative result and ultimately, a misdiagnosis; antibiotics for a breast infection with no probable cause or related symptoms.

More than six months went by, the pain continued and so did the discharge. Something was still wrong, but it wasn’t cancer, right?

At the appointment with my OB/GYN to officially start trying for my first baby, I mentioned my painful breast. She agreed more screening needed to be done. 

I was referred to an incredible breast surgeon who was not satisfied with inconclusive results. She recommended a different mammogram and another ultrasound — still we had no answers. But it was her recommendation for a breast MRI that saved my life. Suddenly, what we were unable to see for months was brightly displayed on film in the form of almost an entire breast lit up with contrast. 

The look on her face was concerning. 

A biopsy was scheduled soon after. And on December 30, 2016, with my mom and my husband by my side, I was diagnosed with breast cancer at the age of 26. 

I remember looking around the room, searching for the person who was just diagnosed with breast cancer.

It could not have been me? They said I was “too young.” My mom told me to think positive and I did. 

I remember my breast surgeon drawing pictures and explaining the science of breast cancer. I heard nothing. 

“Okay,” I said after my hysterical laughter turned into tears. “What do we do now?”

In the months that followed, I tackled a bi-lateral mastectomy, five weeks of proton therapy radiation, two hospitalizations due to soft-tissue infections around my expanders and the following year was no easier. 2019, was the first year in two, I didn’t land in the hospital for one reason or another.

My body has been through a lot, but it is stronger and more resilient than I ever knew it could be. And because it continues to keep going strong, because I have been given more chances than a few to continue going strong, I’m determined to turn my wounds into wisdom.

Written by: ANGEL Advocate, Jasmine Dionne Souers @bravebeauty26, co-founder of For the Breast of Us @forthebreastofus

It all started with a lump…

It all started with a lump…

At the age of 31, I was diagnosed with stage 1b intraductal carcinoma.  It was life shattering.  I underwent six months of chemotherapy, a bilateral mastectomy with reconstruction, and healthy dose of PTSD.  For the five years following, I diligently went to check ups, followed my doctor’s advice to the letter, only to be told at my five year checkup that the breast cancer had returned, this time in my bones.  I was now stage IV and terminal. 

At the time of metastatic cancer diagnosis, I had never heard of it.  Even as a cancer survivor, it had never been explained to me that it could return in different areas of my body.  My oncologist at the time foolishly used the word “cured” on more than one occasion.  You can imagine how devastating this diagnosis is to someone who felt relatively confident in her education on breast cancer. 

It has been five years since that horrible day. At 41,  I can honestly say I am fully living my life with metastatic breast cancer.  It has now metastasized to my lungs in addition to most of the bones in my body.  It is painful and exhausting, yet I am here.  I celebrate that daily.  I am a single mother to my 8 year old son and thankfully, I am still able to work full time.  This is not the life I thought I would be living, but it is my life now and I’ve made peace with that.  In between being a mother and working, I dedicate a lot of time to writing about my cancer experience for my blog, The C Life, and various publications I’ve been lucky enough to be included in.  I’ve recently become an advocate for AdvancedBreastCancer.net, hoping that others finding themselves in my shoes won’t feel as alone as I felt, especially in the beginning. 

My greatest lesson in all of this is that there is still a very real, fulfilling, life to be lived with this diagnosis.  I’ve always been a realist, but I do have hope for a long life.  By adding my voice to some of the very powerful ones speaking out, we are already seeing some change in the way MBC is treated and discussed.  We have more to do…and I’m here for it. 

Written by: April Doyle, MBC ANGEL Advocate

Conquering Breast Cancer – Tiffany’s Story

I was initially diagnosed with breast cancer— invasive ductal carcinoma (IDC) on August 23, 2010. I was 26 years old. I was a newlywed, who’d only been married 4 short months. I found a lump in my right breast in the shower one day in July. I shrugged it off and went on with my day. The next morning, I casually mentioned it to my mom. We both agreed that it was probably nothing to worry about. I was young and healthy, with no family history of breast cancer so there was no reason to think otherwise. Still, I decided to have my doctor check it out. At my appointment a week later, she agreed that it was probably a cyst, but referred me to a breast surgeon for a biopsy just to be on the safe side. Thank God she did. I went for my biopsy and a few days later I was sitting in an exam room with my mom waiting for the results. That’s when I heard the words that changed my life forever— “it’s cancer.”

My world stopped and at that moment I thought my life was over. I was then thrown into the world of oncology. I had to have discussions about things I’d never thought about in detail. Did I want children? There was a possibility that chemotherapy would leave me with reproductive difficulties. And since my tumor was hormone positive, egg harvesting wasn’t presented as an option for me. How would I pay my bills? I am an RN by profession and I went on medical leave during chemotherapy. I would need surgery. I would lose my hair. It was all overwhelming.

I went through 6 rounds of chemo, and had a double mastectomy with reconstruction soon after chemo was complete. I was treated for a full year with Herceptin and finally had my port removed in November 2011. I started Tamoxifen and went back to work. My life had gone back to “normal”. Three years after my initial diagnosis at a routine visit with my oncologist, the topic of children came up again. This time with my clean bill of health, I was given the green light to try and conceive.

I found out I was pregnant in February of 2014, after suffering a miscarriage in December. I gave birth to a beautiful baby girl who my husband and I named Eliana; which means God has answered. In December 2017, I had another baby girl and named her Isabella. My husband and I couldn’t have been happier. Shortly after my second daughter was born, I restarted my tamoxifen just as I’d done after the birth of my first child. I saw my oncologist who again gave me a clean bill of health. I felt great and my labs were perfect. Then in the spring of 2018, I came down with a cold. It kept getting worse and worse. I have asthma and get frequent sinus infections, so my cough was nothing suspicious for me. I made an appointment with my primary care doctor thinking it was an asthma flair up caused by the cold/sinus infection. I was given a steroid shot, an antibiotic, and a nebulizer treatment. And I got better, but only for a short while. It all came back and it seemed like nothing was working. I made an appointment with my allergist, thinking he would maybe have a solution. Still nothing. Finally, I suggested to him that perhaps I needed an X-ray, so he wrote a prescription. The X-ray showed that I had a pleural effusion, which is basically fluid around my lung. I was referred to a pulmonologist. I then had an outpatient procedure done at the hospital to have it drained and sent off for pathology. He also ordered a CT scan given my history. And just as before, a few days later I went to the pulmonologist’s office for the results; this time with my babies in addition to my mom. And once again I heard those same words, “it’s cancer.” Cancer had invaded my lung, my hip, my spine, and my liver. This time I wasn’t afraid. I knew what I had to do. As I sat in that office and listened to those results, all I could see was my children’s smiling faces. They had no clue what was happening. I knew I had to fight, not just for myself but for them and my husband. And I’ve been fighting ever since.

I was hospitalized shortly after that because the fluid surrounding my lung returned, and I required the use of oxygen. I started chemo in the hospital and had an anaphylactic reaction to the drugs. Because it was a severe life threatening reaction my chemo was stopped indefinitely. My oncologist would have to come up with another plan for me. I was discharged home with a drain coming from my chest that I used to release the fluid from around my lung. A week later I started a new chemo regimen. I completed 16 straight weeks of chemo, and was able to have the tube removed from my lung. My scans have been good and there is no new evidence of disease in my body. God only gives his hardest battles to his strongest soldiers and I have been up to the task. I still go for my infusion of Herceptin, Perjeta, and Zometa every 3 weeks, and may be on some sort of maintenance therapy for the rest of my life. I also get Lupron injections every 3 months along with CT scans and take Femara daily. But none of that matters to me. I am just blessed to be here. I thank God that I get to wake up each day and kiss my little girls’ foreheads. I get to laugh at my husband’s silly jokes. I am alive and will continue to fight to live.

Written By: Tiffany Kinkhead, Tigerlily ANGEL Advocate

Marnie

Marnie is a former Wall Street professional, thyroid cancer survivor and breast cancer previvor. After being diagnosed with the BRCA gene mutation, she had a preventative double mastectomy to decrease her risk of getting breast cancer. Breast cancer is particularly close to Marnie’s heart as her mother was diagnosed with breast cancer at the age of 40 and she herself was diagnosed with the BRCA gene mutation and had a double mastectomy and reconstructive surgeries.

Through her own experience, she became passionate about helping patients feel beautiful and confident again after such an emotional and demanding journey.

Marnie designed the Billow pillows to help women find comfort and relief post-surgery. She also offers areola/nipple restoration, scar camouflage and brow services to her clients through her company Medi Ink, LLC. She absolutely loves seeing them shine again following their procedures!

Marnie is licensed and certified as a Permanent Cosmetics / Medical Tattoo Artist and is a member of the Society of Permanent Cosmetic Professionals, the International Society for Oncology Esthetics, and the Society for Integrative Oncology.

Morgan DePaolo

My name is Morgan DePaolo and I was diagnosed with breast cancer in September 2015. I was having symptoms for a while, but I thought it was just an infection in my breast due to breast feeding. Breast cancer doesn’t run in my family and I breast fed my daughter, which I thought reduced the risk! Also, at the time I was only 23 years old! When I was finally diagnosed after the mammogram and biopsy, I was told that I had Ductal Carcinoma. I opted to have them both of my breast removed out of fear. I knew I would never want to go through something like this again. 

The year 2015 was very bitter sweet for me because I graduated from Pennsylvania State University, then four months later, I was diagnosed with cancer. I’ve been resilient in the face of adversity all of my life. I’m a survivor and I’m very grateful despite the circumstances. Unlike many other cancer patients I did not have to have chemo or radiation; just a double mastectomy.

The worst thing that happened during the recovery was the infection that developed in my breast, which kept me in the hospital for a few days and caused me to have another surgery the week before I was about to go back to work. So, instead of me being out of work for six weeks I was out for ten.

I have a four year old daughter who I raise by myself. When I was diagnosed cancer I was so afraid for my daughter. I knew I would be okay and I had faith. I knew I would have to take a medical leave from work, and work is all I know. I worked extremely hard to take care of myself and my daughter. I didn’t know how I was going to keep up with my bills. Also Christmas and my daughter’s birthday were both less than a month from my surgery. Luckily, I was blessed with a great support system and I applied to tons of non-profits who helped me financially. I always keep a positive attitude and try to seek the good even in the worst situations. 

The photo you see is a picture of my daughter and I on her fourth birthday. I was two weeks post surgery with four drains in my body. I’m very tenacious and determined. I refuse to let cancer tear me apart. Right now I’m going through reconstruction with the tissue expanders. My body has changed drastically, but I still feel the same on the inside. I feel empowered, grateful and inspired. I’ve meet tons of inspirational men and women and I have become apart of an extremely supportive community.

Maggie Kudirka

Maggie Kudirka began dancing at age four and later studied the Vaganova syllabus with Olga Tozyiakova, Svetlana Kravtsova, and Vadim Pijicov in her hometown of Ellicott City, Maryland.  She graduated magna cum laude from Towson University where she performed principal roles in Swan Lake, Giselle, and Paquita. She danced professionally with Ballet ADI under the direction of Runqiao Du dancing principal classical roles in addition to creating numerous contemporary roles. Her many awards include the $5,000 Rising Star Award for Emerging Performing Artists, a silver medal from the Youth America Grand Prix (YAGP) Philadelphia Competition, finalist at YAGP New York nationals, and full merit scholarships to the Joffrey summer intensive and ballet trainee programs.  In 2013, she joined the Joffrey Concert Group where she worked with Francesca Corkle and danced featured roles in works by Gerald Arpino, Donald Byrd, Larry Keigwin, Shawn Hounsell, Africa Guzman, and Davis Robertson.

After receiving a stage 4 breast cancer diagnosis in June 2014, Maggie took a leave of absence from the Joffrey Concert Group to undergo treatment.  On June 24, 2014, she launched the Bald Ballerina Facebook page to share her cancer journey with family and friends and to raise awareness that breast cancer can also strike fit young women with a healthy lifestyle. Bald Ballerina has since grown into a social media movement with over 6,900 followers from over 40 different countries throughout the world.  Her story has appeared in TODAY.com, the Daily Mail.com, Vogue.com, Dance Spirit Magazine and many others. A feature story created by     WBAL-TV in Baltimore was broadcast by NBC affiliates across the USA.  She currently is an advocate for Living Beyond Breast Cancer, METAvivor, and the Dancers Care Foundation. She travels throughout the United States giving master ballet classes and speaking to young dancers about metastatic breast cancer.

Tricia Russo

On my 30th birthday, we welcomed a new exciting decade, anticipating my burgeoning career, starting a family, and dreaming of the home we would one day purchase..six months later, I was diagnosed with stage 2B breast cancer.

My husband, my family, and I were shocked by the diagnosis as there is no family history of cancer, but we hit the ground running.  After consulting a fertility specialist, and determining the risk of holding off treatment to harvest and freeze embryos was too great, I underwent treatment at the Disney Family Cancer Center in Los Angeles.  At the time, I worked in development for Walt Disney Motion Pictures after earning my MFA at USC’s Peter Stark Producing Program in 2009.  My office was located across the street from my cancer center.  After a year of treatment: chemotherapy, radiation, and mastectomy surgery, we celebrated my cancer-free status and looked forward to being able to getting back to “normal” and starting our family after one more year of hormone therapy.

In February 2013, while in New Jersey visiting my family, intense headaches led to an MRI showing a brain tumor and I was rushed to NYU Langone for brain surgery, followed by partial brain radiation.  It was successful, but, now with Stage 4 cancer, my life would never be the same.  Everything that I thought was ahead of me was at risk.  It was no longer possible to have a child the traditional way and my stressful career no longer seemed healthy.  Confused, I left the career I’d spent years building and moved back to New Jersey to be closer to my family and started working for my family’s real estate business.

My hopes of egg harvesting were once again dashed after a brain MRI discovered a small recurrence.  I had gamma knife surgery and thankfully, have been stable for almost 2 years.  In 2012, I became very active in the breast cancer advocacy community. Last year I formed a non-profit, to fund a documentary about our journey to start our family through egg donation and surrogacy to help others dealing with cancer and infertility.  With the help of an egg donor we created two embryos, the first miscarried and we are anxiously awaiting the transfer of the second.

Now four years from initial diagnosis, at the age of 34, I’ve returned to Los Angeles where I reside with my husband, and our two mutts, Zelda and Link.  We recently fulfilled our dream of home ownership and the pups have a small yard.  Lifestyle and nutrition changes have been a big part of my healing process.  One day I hope to bring home a child and finish our documentary.  In spite of everything I have experienced over the past four years since initial diagnosis, I believe happiness comes from consciously creating our lives.

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