Reflections

October 14 2020

Jamil Rivers -Putting the Power in the Hands of Black Women

This video has been brought to you by the #MyLifeIsMyLegacy Campaign

Jamil Rivers was diagnosed with mBC in 2018 at the age of 39. As a mother of three, caregiver, and working professional, Jamil has a fierce determination to survive. She has learned a lot about life and herself through her struggles with mBC. For one thing, she knows that she’s strong and can make a positive difference. In her first year of chemotherapy, Jamil worked her first year of a new job. Worried about the possibility of losing her job (including income and benefits), she did not disclose her diagnosis at work. She shaved and tattooed her eyebrows, wore a wig, and went to work and chemotherapy every day. Fortunately for Jamil, her treatments were showing positive results and her tumors were shrinking. Now on an oral treatment, she is focused on living her best life and leading as an advocate for other Black women who may face inequalities and disparities in the medical system. Before her cancer diagnosis, she says, “I never questioned God’s path for me.” Yet when she received her diagnosis, it immediately followed her husband’s recent recovery from cancer. And so at first, she thought, “My kids already have one parent with cancer. Now you’re going to give them two parents with cancer?” But eventually, she realized, “Well, why not me. Cancer focuses your life. It clears out everything that’s not important. It educates you about who you are. I’m stronger than what I ever believed possible and I have accomplished more than I ever thought possible.”

In response to mBC, Jamil became motivated to survive for her family and become an advocate for change. Jamil believes that the most violent aspect of cancer is the unequal medical system and unjust racial health disparities that prohibit treatment and worsen cancer outcomes for many Black women. This is the most violent aspect of cancer because of Black women’s vulnerability to “a system with unconscious bias and structural racism.” This bias can impact care with devastating effects. But if Jamil can make a difference in “penetrating people’s thoughts, emotions, and motivations in order for us to really get to the crux of the problem, then, okay.”

In addition to her own work, Jamil has also seen growth in her children. She explains that they also express learning and becoming motivated from their parents’ experiences with cancer. “I see my kids growing into these empathetic, compassionate, intelligent, thoughtful, curious people,” she says, “and they’re amazing human beings.” Of cancer, Jamil says, “I never believed that cancer is a gift,” but it’s a crucial “part of my story.” Even though it is horrible and scary, Jamil accepts it. “I’m still here,” she says. “I’m still breathing. So I’m going to live my life and do what I can with this.”

Bio:

Jamil Rivers, who was raised in New Jersey and now lives in suburban Philly, is married to the love of her life and has three amazing boys. Jamil and her husband are both cancer survivors and have both been caregivers and patients at different times. Jamil is close to her family, sisters, and girlfriends, loves crossword puzzles, and describes herself as a foodie. She also works full time as Chief Financial Officer of Education Works; is Board President of Metavivor Research and Support, Inc.; a Board member of Living Beyond Breast Cancer; and an Angel Advocate with the Tigerlily Foundation. Jamil also founded a breast cancer education and navigation organization called The Chrysalis Initiative.

September 8 2020

Demystifying life with chronic illness

Truth be told, sometimes the hardest lessons to learn are the ones our spirit needs the most. These two pictures are forty-eight hours apart. That’s how quickly life can change. That is how quickly life with cancer and invisible illness can change.

At the beginning of the week I posted a video explaining the chemotherapy I had been on, was no longer working. The tumor on my brain has grown and stopped responding to treatment.

I woke up that morning, put on a full face of makeup on and a cute pair of jeans and headed into a “normal” scan appointment. Within six hours I was home after undergoing a new course of invasive direct tumor chemotherapy. My bright eyes and pink skin turned grey and pale within hours. My spirit was shaken and my soul was grieving to turn back the clock back forty-eight hours. Dressed to the nines, holding my glass of champagne by the water, without fearing cancer test results. I wanted to go back in time.

But sometimes the future changes quickly. And we are left with only one choice…. what to do next. We can choose to be afraid of it, assuming the worst. Or we can step forward into the unknown and assume it will be fabulous. Knowing there is one constant in life and that is change. We can try and resist, we can try and turn back the clock and cling to yesterday. Or we can lean into faith knowing that our stories have a purpose.

I choose to share my story to help demystify cancer, autoimmune and even life. This week I had to look at life’s lessons and let go. I had to allow life’s lessons to strengthen my soul, my virtues, and my beliefs. Freeing myself from the past I cannot change or go back to. Looking ahead and focusing on just one step at a time. Recognizing I don’t need to conquer the entire mountain right now. I will continue to wade in the discomfort of the unknown with vulnerability and truth. I will be brave and face my fears so they don’t become my limits.

A diagnosis doesn’t come with an instruction booklet. No one tells you how to handle or manage your days. Most days we push through the pain, the exhaustion, the fatigue, the brain fog, the fear and mountains of guilt. In the blink of an eye our life can change because of our disease. Our goals, dreams and priorities are forced to take a different turn. So we become grateful for the little things and worry less about the big things. We leave behind the history of yesterday and determine how we will use today’s energy. This is life with chronic illness.

Wrapping you in love and light,
xoxo-Dr. Fab

Written by Dr. Fabiana Marie, N.D, MBC ANGEL www.fabulouslyfighting.com

My-husband-and-I-during-my-last-capping-1-825x510

May 20 2020

Controlling My Story With Scalp Cooling

BY: Shea Mencel

I was diagnosed with Stage II, hormone receptor-positive breast cancer in June 2018. I was 29 years old. Life as I knew it, as well as the life I had imagined for myself, drastically and permanently changed overnight. “Cancer patient” became my new full-time job and followed with a year consumed with treatment and procedures including a double mastectomy, fertility preservation, chemotherapy, reconstruction, and radiation.

One of my initial looming thoughts during my transition to cancer patient was: “Will I lose my hair?”. I assumed the answer was a resounding “yes.” To my amazement, I was wrong. Through a simple Google search, my mom discovered hair preservation during chemotherapy is possible through a method called scalp cooling.

This option was not presented, or even mentioned, by any of the doctors or nurses on my team. Most had never heard of it. When I inquired about scalp cooling, my oncologist discouraged me from moving forward with it, saying it was “too painful” and it “would not work.” He said the only patient he knew who had tried it was a model, so she must have really needed her hair. The insinuation that a woman going through cancer treatment who wants to keep her hair is doing so simply for vanity only gave me more encouragement to prove my doctor wrong.

Oncologists proactively fill scripts for nausea, mouth sores, and countless other chemotherapy side effects. I was astounded this particular side effect was met with hesitation, disbelief, and discouragement; particularly since for many it is as heartbreaking as permanently losing your breasts. Yet, when I pushed for it, I was passively accused of vanity and encouraged to focus on survival and not how I looked. But, I had already lost my breasts. I was learning to love a new body that felt foreign to me. I was preparing to possibly lose my fertility. I was grieving these losses while also learning how to surrender to the growing list of changes that were out of my control. Why would I not at least try to retain my sense of self at a time when there was very little?

Scalp cooling, also commonly known as cold cap therapy, prevents hair loss during chemotherapy by cooling the hair follicles during infusions using cooled headpieces. I had four caps that were chilled to approximately 35 degrees below zero using dry ice. For each infusion I spent 10 hours wearing these cold caps. I started one hour prior to my infusion start time, wore a cap through my entire infusion and kept wearing them for four hours after my infusion concluded. During this time, I had to change the cap every 25 minutes for a colder one to keep my follicles at the correct freezing temperature. Imagine a full day of the worst brain freeze you’ve ever had without the satisfaction of the ice cream!

The process was a lot of work, particularly for my family, who helped me unfailingly during each infusion. When I arrived for treatment, I would snuggle into my chair, wrap myself in a heated blanket, and take a deep breathe. Once the hat was strapped firmly to my head, the bitter cold would engulf my whole body, but after ten minutes my scalp would numb, making the process more manageable. The heaviness of the cap was immediate. I wore a travel pillow around my neck to ease the weight, but the heaviness resulted in a chronically aching neck throughout treatment. Meanwhile, my family arrived ready for our chemotherapy tailgate pulling a large cooler of dry ice and snacks to keep us going. While I met with my oncologist, my husband would tirelessly rotate my caps every twenty minutes on ice to get them ready for the day. I quickly, and proudly, became known as the “cold cap girl,” as I was the only patient using them in my treatment center.

Each family member had a vital role. My husband, who we appointed our “cold cap captain” monitored the temperature of the caps and kept them rotating in the dry ice, as well as guided the entire process. My mom and mother-in-law barely had time to sit down before they had to remove a cap from my frozen head and replace it with a colder one, strapping it to me as tightly as I could tolerate. My dad would massage the caps in the cooler as they became harder throughout the day from being on ice, in order for them to be shaped and fitted onto my head correctly. The goal: Don’t let your hair follicles get warm, thus preventing the chemo drugs from permeating your delicate strands.

Hair care in between treatments and the six months following the conclusion of my chemotherapy regimen was challenging, and often greasy. Per the instructions from the scalp cooling company providing my caps, I was only able to wash my hair twice a week under an extremely delicate water stream, and of course, in very cold water. I could not apply product to my hair, nor could I use a hair tie to disguise my dirty locks. After each cap session, my scalp would flake off from the freezer burn, which I quickly learned to embrace, as trying to remove the flakes put too much stress on my hair.

I knew the therapy was working when, two weeks after my first infusion, I began to lose my body hair but the hair on my head stubbornly remained. At the conclusion of my chemotherapy treatment, I lost less than 10 percent of my hair — a barely noticeable amount, even to me. My hair began to grow a month later, and has come back thicker than before.

I was able to control my narrative. It was up to me if I wanted to share my story or elaborate on my diagnosis. I was able to do simple things like go to the grocery store and out to dinner without enduring constant stares or being labeled as “the young woman with cancer.” I was able to look in the mirror and still see a resemblance of myself. I was even a bridesmaid in my friend’s wedding a few weeks after my first infusion. To be able to stand with my friends and still feel confident and beautiful was a gift I will never forget.

Although my experience was extremely positive, there was an unexpected downside of using this therapy, especially as treatment ended. Scalp cooling allowed me to keep a sense of privacy and normalcy, but it also made it more difficult for people to understand the gravity of my experience. There is a perception my experience must not have been difficult since I kept my hair. I did not fit the mold of what a sick person looked like, and this resulted in confusion and occasionally insensitive comments. The truth is cancer stripped me of myself. Moving forward after this experience is a different, and often more complex and heartbreaking process. But having hair while I am doing so has been a source of comfort and normalcy in a sea of unknown. Being able to feel some physical resemblance of myself has been instrumental in the process of healing and moving forward.

I’ve learned that hair is not “just hair.” For me, it represented fighting back in every way possible and refusing to let cancer take more than it already had. Maintaining self-image was self-empowerment, self-advocacy, and self-healing. My hair signifies a girl who advocated for herself, who chose the options right for her regardless of outside opinions, and who refused to relinquish all control during a time of forced surrender. My hair is my crown of victory. I fought back. I won.

Watch as we Have The Chat About Preserving Your Self-Image with Shealyn

This Have The Chat Video has been brought to you by Paxman Scalp Cooling

March 26 2020

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

February 13 2020

Faith as a Foundation for Healing and Growth

“The View from the Mountaintop” by Lynda Gail Salmon, Ph.D.

Three weeks after receiving my Ph.D., I was diagnosed with stage three ovarian cancer. It was a new mountain to ascend, but the trail had been blazed before me by my mother, who died in 1991 from the same disease. I lived in terror for five years when she was ill.

Desperately wanting to save her, I researched healing techniques as diverse as color therapy and psychic healing. My mother’s walk with cancer was difficult and courageous. Chemotherapy left her only a shadow of her former vibrant self. After her passing, it took 10 years before I could even speak the word “cancer” without a visceral reaction.
Nevertheless, when I received my own diagnosis, the world as I knew it stopped. I died and was born again. I now had a new label: “cancer victim.” No, I told myself, I was not going to be a victim. I knew the dangers of living with a victim mentality. Further, the typical approach of battling cancer as a heinous monster within was unacceptable. I did not want a battle raging inside my body. For me, the rugged path up this new mountain must be marked with the spiritual signposts of light, love, forgiveness, and connection. I wanted to expand my consciousness and relationship with God.

“I have God’s work to do! I can do this!” I reminded myself continually. “I scaled the Ph.D. Mountain; therefore, I am resourceful, resilient, and strong. During that climb, I was never alone. God led the way!” This knowledge became the serendipitous gift that helped sustain me through moments of darkness on my healing journey.

My mantras became: “Now is the perfect time to be happy.” “I am healthy and whole now!” “I shine my light and love wherever I am.” I no longer waited for all to be perfect to live my life fully and joyfully.

My healing journey has required that I release the self-imposed limitations and false beliefs I had allowed to define me. I remembered my mother telling her minister that she was tired of people seeing her as a disease. Perhaps she had begun to see herself that way too. I realized I could no longer define myself by my mother’s experience, nor by my childhood, education, age, finances, marital status, or past pain. Who I Am is beyond those descriptors.

As this awareness continues to deepen and unfold, I revel in the freedom that results from forgiving myself and others. While peeling away the layers of guilt and shame can be difficult, unexpected insights continue to propel my release and expansion. Thanks to the angelic outpouring of love and support from the people around me, I have lost my longtime fear of becoming ill while living alone. My intention to break free from what has bound me soars on the wings of faith.

I have walked this path for nearly two years, bridging my treatment protocol between the natural and medical worlds of health. My days are graced with new spiritual tools, practices, and mentors who bless me with their wisdom and spiritual understanding. Good nutrition, essential oils, prayer, healing meditations on YouTube, emPower™ positive music, and inspirational books rejuvenate my daily life and spiritual growth.

Throughout it all, I have continued to work, write school curricula, develop a summer program, serve my church as a prayer chaplain, volunteer, travel, and facilitate trainings, workshops, and retreats, bringing spiritual ceremonies and celebrations to others. I am fully alive, enjoying life, and expressing God through my thoughts and actions.

I continue to walk this path of transformation. I smile at how often I find myself dancing and taking in the miracles around me. I sit at my computer and ponder, What is it that Spirit wants you to know? Here is what I wish to share with you:

Beloved traveler,
You may have just gotten a diagnosis, you may be well into the journey, or you may be a support for a loved one. It may be difficult for you not to define yourself by lab numbers, test results, and a body that is crying out. Feelings of helplessness may immobilize you.
Always remember, you have the power to:

Hold fast. Know that you are not alone. Hold fast to the realization that, “… with God all things are possible.” Hold fast to your spiritual perfection. Hold fast to the feeling and image of total health. Hold fast to giving and receiving love. Hold fast to expressing gratitude to the Divine.
By virtue of our common journeys, I proclaim that if you Hold Fast to defining yourself as a magnificent creation of God, your Divine Ph.D. (Powerful Healing Direction) will bring you to a mountaintop experience.
I’ll see you there!

From Never Alone: Facing Cancer with Faith (Special Edition), published by Unity World Headquarters.

Affirmations for Healing and Wholeness

I am whole and healthy in mind, body, and spirit.
I am open to the wisdom of Spirit.
God’s healing power is at work in me now.
I am lifted up by the power of God within.
The peace of God lives in the quiet of my heart.
Divine life renews every cell in my body.
I am wondrously made of infinite love.

From Never Alone: Facing Cancer with Faith (Special Edition), published by Unity World Headquarters.

FAITH

Faith keeps me strong and confident.

Faith is an inner knowing that arises from my connection to Divine Mind. It allows me to move beyond the limitations of my fears.

Faith does not mean always being strong– but faith gives me the courage to take the next step knowing strength will come. It does not mean having a perfect plan, but moving forward assured that guidance and direction will be provided in a perfect way. Faith does not mean always getting exactly what I want, but knowing that my good is available in every situation.

My good may be a new idea or insight; it may be comfort, help, or a whole new way of living. Faith encourages me to keep anticipating the good. I am in awe of the blessings that continue to appear in my life.

And to the centurion Jesus said, “Go; let it be done for you according to your faith.” Matthew 8:13

From Never Alone: Facing Cancer with Faith, published by Unity World Headquarters. Get this free booklet (hard copy or digital): https://www.unity.org/publications/resource-materials/never-alone-special-edition

January 29 2020

Cancer at 27, Chemo at 28

I was sitting at our coffee table marking school papers when I scratched an itch on my breast. Initially, I felt a lump like a marble or cherry tomato under the skin in November 2018 and called my Mom. I then went for a first and second biopsy at a breast and thyroid specialist. It was around December when I was diagnosed with Stage 3 Breast cancer at an age of 27. I was completely numb and reacted in a weirdly cold or professional way when I first received the news. Luckily, my type of case was early detection as Doctor also called it good cancer.

I have a family history of breast cancer. Both my maternal grandmother and two of my mother’s sisters were diagnosed with Breast cancer but surprisingly, my diagnosis was not genetic but hormonal. From the moment I was diagnosed, I started to keep a very detailed record in my daily planner to use the information to start an Instagram account as this was my support network. I thought I could be vulnerable, hurt and angry but it helped me work through those raw emotions and protect my friends and family. It became the most important support and I didn’t need to rely on my friends and family for all my healing because I could connect with people all over the world who have undergone the same journey.

My treatment fit very neatly into a year which was a blessing. As I was diagnosed at a young age the chance of cancer coming back or spreading was very high, so we opted for a double mastectomy with immediate reconstruction. Being just 6 months married, it wasn’t the most pleasant news as I would never be able to breast feed. This was a harrowing time as I wanted to ask Doctor for opinions and answers, but we didn’t really know where to go for this support before turning to Instagram. I took my time doing some research about options for a lumpectomy and or a single mastectomy before undergoing the operation.

It is hard to know you have Stage 3 cancer and that it would cost a lot to pay for the treatment. I went for chemo (the red one) every third Friday in the afternoon so that I wouldn’t miss school time which continued throughout the second school term. I had to shave my hair off on our first wedding anniversary in April Louis and felt sick on bed. I took some time off from work in between my chemo treatments. Then, at the beginning of the third term I started with weekly paclitaxel and was told that I needed radiation too. I was tired after the year and wanted to go to my radiation sessions in peace. In terms of services offered, there are lovely people at Cancer Care Cape Gate where I was treated. I turned to my ladies on Instagram for advice when I needed it.

The biggest obstacle for me was not knowing what would happen next, and what to expect. It was difficult to comprehend the medical side of things because Doctor’s work with these things every day but for me it was my first time with cancer which they should remember.

Moreover, the physical losses that I faced weren’t easy. I looked and felt less like myself without lashes, brows and having to lose all the hair. During adolescence we all get to know and learn to love our bodies and ourselves. I loved my eyes, hair and most of all, boobs which are the three things cancer took from me.

The most important thing I would like to share through my story is not to go through this alone. There are different doses of chemo and types of cancer so not many people would be able to work while going through treatment. It is always better to find someone with whom one can talk, ask and share their concerns as information strengthens everyone’s hand. Although, it can be a big thing to have been diagnosed with cancer, but you mustn’t allow it to take over your life. One must try to stay active and creative for if laughter is the best medicine, then creativity is the best therapy.

Written By Jana Hurter, Tigerlily ANGEL Advocate

January 14 2020

Three easy ways to be a breast cancer advocate

One of the things I learned as a 2019-2020 Living Beyond Breast Cancer Young Advocate is advocacy can take many forms. In fact, there’s an entire spectrum and sometimes, we get caught up because our advocacy doesn’t look the next person’s.

No, you don’t have to be “cancer-lebrity” with thousands of followers to be an advocate. You don’t even have to be great at public speaking or understand politics.

Here are three easy ways you can be a breast cancer advocate:

ADVOCATE FOR YOURSELF AKA PERSONAL ADVOCACY

After my bilateral mastectomy, I endured a week of craziness while my doctors went back and forth about whether or not I needed to do chemo. When a decision was made to not do chemo, I asked my medical oncologist to explain her logic and to also explain the logic for it. She scoffed at my request and told me I could do chemo “if I wanted to.” Needless to say, that was my last appointment with her.

You deserve a cancer care team that listens when you ask questions, seeks answers for your concerns and treats you as a whole person, not just a disease. Something as simple as researching your treatment options or seeking a second opinion, shows you are making decisions in support of your personal health.

SHARE YOUR STORY AKA MEDIA ADVOCACY

As both a young breast cancer survivor and a black breast cancer survivor, it was tough for me to find women that looked like me online. So, I started a blog called Adventures of Brave Beauty and started sharing my experiences on my journey. I eventually, I found other cancer-centered blog communities like Ihadcancer.com and co-founded my own community for women of color affected by breast cancer called For the Breast of Us.

Our stories are not our own. Our words can heal those around us just by showing them they’re not on this rollercoaster alone. And every time we lend our voice to the conversation, we not only have the opportunity to educate and enlighten others, we give a face and a voice to a disease that’s often sexualized and tied in a pretty pink ribbon. Whether you join the #bcsm Twitter chat or decide to guest blog for your favorite cancer community, sharing your story is another powerful to be a breast cancer advocate.

VOLUNTEER AKA ORGANIZATIONAL ADVOCACY

In 2018, my mom and I attended our first Young Survival Coalition Summit. Every year, there’s a dance party during the weekend and every year I’m moved as I look out on the dance floor of women who’ve gone through so much, but for one weekend they’re not the odd girl out. For one weekend, they’re surrounded by love and laughter and a sea of other women who just get it. After my first YSC Summit, I was determined to bring that energy back to my hometown in Jacksonville, FL. So, I registered to be a volunteer State Leader and a face-to-face group coordinator.

Many of your favorite cancer charities will have opportunities for you to connect your local community to their national resources. My best advice for those interested in this route is to seek balance and make sure you’re far enough out from treatment that you’re comfortable and well enough to remain personally engaged with the cancer community.

Being a breast cancer advocate starts at home by advocating for yourself and can expand as you become comfortable sharing your story and even connecting your community to national resources. You don’t need access to anything or anyone special. Just start with what you have and who you know because in the words of former President Barack Obama, “Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we’ve been waiting for. We are the change that we seek.”

By Jasmine Dionne Souers @bravebeauty26, co-founder of For the Breast of Us @forthebreastofus, Tigerlily ANGEL Advocate

November 29 2019

Holiday Blog: The answer is, through gratitude.

For any person, coming upon the end of a year can make you feel like you are searching for all the promises you’ve kept, goals you’ve accomplished, and ways you became a better person. But as a young breast cancer survivor, how do you manage the expectations you would normally have of yourself, against the powerful knowledge that you are renewing your existence everyday as you fight this disease?

The answer is, through gratitude.

I was diagnosed with Stage I breast cancer in March 2018, at the age of 29. I had no family history of breast cancer or related genetic mutations, and I certainly didn’t fit the “typical” markup of a breast cancer patient. I was succeeding in an elite position in media relations, I was enjoying the new found self-love and growth that comes with ending a relationship that is wrong for you, and I was prioritizing the most important things in my life (family, spirituality, community and mental health).

When cancer walked into my life, it singlehandedly tried to transform me from a young, vibrant, flourishing woman into what felt like a body which was on this earth for the sole purpose of being kept alive.

The physical and mental pressure of chemotherapy, multiple surgeries, endless scans, hormone therapy and one year of infusion treatments pushed me to the edges of my body and my soul.

During that time, one of the most challenging parts of figuring my way out through a diagnosis that came out of nowhere was learning to love the person I was becoming versus the person I thought I would be. Specifically, as someone who had pursued higher education, a challenging career, and lived away from family all for the sake of achieving success, I had to make the decision to accept that this path, with all its darkness and fright, could transform parts of me I would have never met, and therefore bring me to a more powerful way of living.

As my body did its job – processing toxic medicines, keeping food down, and killing cells left and right – I needed to know that somehow, my mind and soul too had a purpose for going through all this.

Every three weeks when I travelled from Washington, D.C. where I lived and worked to New York City where my family was for chemotherapy, and required a minimum one week period to recover from the harsh treatments. The multiple surgeries which demanded a four to six week rehabilitation period. And the scans that lasted anywhere from 15 to 45 minutes of being trapped in a tube or under a metal plate. These were the times that became my opportunity to sit with the quiet part inside me that had been absorbing all the information from the doctor’s appointments, all the statistical research, all the lifestyle changes and all the reflections about my changing appearance. The quiet part which somehow got me through all of it, by being brave and strong in the face of dark newness. She was the quiet part which saw the tide coming and said “no, today we fly.”

I began to meet with her often, and eventually, outside of the times of waiting, anticipating and recovering. And every time I met her, I thanked her for not only how she was getting me through the present, but how she would make my life worth living in the future, through this very experience. I didn’t need proof, or a job offer for a better life awaiting me after cancer, I just trusted in the parts of me that had grown the ability to become quiet, that this would happen.

Through practice, when I came into my stillness, I developed the precious ability to distinguish my temporal suffering from actual positive shifts in my life path.

My cancer journey eventually opened up the chance for me to move back to my hometown, New York City, and start the philanthropic fashion business I had always dreamed of as a child. Through my cancer journey, I experienced not only the loss of identity that comes from hair loss, but also the shame and embarrassment that comes from being forced to wear fake hair or head wraps that make you look like a cancer patient. During my times of stillness throughout chemotherapy, I started to sew my own stylish head wraps since the fashion world lacked the options I needed. My quality of life changed when I created a solution which allowed me comfort and coverage while giving me back the elegance and vibrancy cancer had once stolen away, simply by being able to dress like myself.

Whether I was shuttling between cities or appointments, or trying to make social plans to live as normally as possible, my head wraps began to give me the confidence and courage to experience the world around me while I healed. Through my stillness and gratitude, I realized this problem is not limited to my experience only. And therefore the solution is inherently, not my solution only.

I now run my own fashion label, where women can shop for head wraps the same way the shop for clothes – by season and by occasion. Because of my experience, hair loss no longer stands between women facing cancer, and the experiences and places that bring them joy and healing.

I still sit with the quiet girl that lives inside me. The one that knows the value of understanding the difference between temporal hardships and positive shifts for the better.

The gift she has given me, in short, is the ability to seek moments and actions that will create gratitude within me. As I spend my holiday season continuing to express that gratitude toward myself, my growth, and my purpose in helping other women, I hope you will learn to practice that same stillness in your life. You are moving mountains every day. Each footprint forward should leave an impression of gratitude toward yourself throughout the year. You have earned every step, every moment and every glory.

Written by Sonya Keshwani (@NYMannequin), Young Breast Cancer Survivor and Founder of StyleEsteem (@StyleEsteem)

September 25 2019

Overcoming the fear of recurrence and embracing my metastatic sisters

At my first conference for young women affected by breast cancer, I remember the other ladies talking about how their metastatic breast cancer started with a cough. Then, after that day, every time I got a cold, I was terrified.

I remember once suggesting maybe the women with MBC needed a separate support group. To not scare the early-stagers, you know? Or maybe, more selfishly, to not scare myself.

I spent my first cancer-free year insulating myself from all things related to recurrence and MBC and you know what happened?

Ten years after she beat breast cancer for the second time, my grandmother was diagnosed with metastatic breast cancer. It was like my worst fear was at my neighbor’s doorstep; close enough to force me to pay attention.
This was not the happy cancer journey ending I was used to. There would be no more bells to ring at the end of treatment because there would be no end of treatment for her.

Suddenly, her issues were my issues. I needed to understand everything I could. My mom needed to understand everything she could. I had to teach my mom how to advocate for my grandmother like I learned to advocate for myself. I had no time to be afraid; I needed to be informed.
And that’s when the light switched for me.

Pretending metastatic breast cancer didn’t exist, didn’t really stop it from existing; it didn’t lower my chance of recurrence; it didn’t mean I’d never be in the 30 percent of early-stagers who later develop MBC. Pretending metastatic breast cancer didn’t exist only meant I was uninformed, and that I was ignoring the plight of thousands of people literally dying to be seen and heard.

And how could I ignore the struggles of my grandmother receiving an accurate diagnosis? How could I overlook the lack of resources for the ladies in my support group? How could I turn a blind eye to the need for research when there’s a steady stream of young women passing away on my social media timelines?

I couldn’t any more. I could never again.
We don’t need to be afraid when a woman shares how she discovered her MBC diagnosis, we need to educate ourselves about the symptoms of a recurrence.

We don’t need separate support groups to not scare the “early-stagers,” we need more empathy and understanding and acknowledgement of a very real possibility for all of us.

We don’t need to pretend MBC doesn’t exist, we need to amplify the obstacles faced by this segment of our community.
There is no “us” and “them.” There’s only “we.” And we must fight for each other like we’d want someone to fight for us.

September 20 2019

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