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#TLCTransform Chat: The Inclusion Pledge Partnership to Impact Health Equity

The Tigerlily Foundation hosted #TLCTransform Chat: The Inclusion Pledge Partnership to Impact Health Equity, on 7/1/20. The meeting began with an active listening session about the deeply disturbing disparities facing Black women in every aspect of breast cancer research, diagnosis, treatment, and mortality. The community was presented with the origins of the pledge and encourage to consider their role in ending health disparities.

Our all star cadre of guests included: 

Maimah Karmo, President Tigerlily Foundation

Angel in Disguise, MBC Advocacy Organization 

Julia Maues, MBC Patient Advocate 

Christine Hodgdon, MBC Patient Advocate  

Jamil Kali, <> 

Dana Donofree, Patient Advocate  

Tomika Talks, Patient Advocate 

Part 1: The Story of the #InclusionPledge

What’s the Inclusion Pledge?

The Inclusion Pledge is 21 words committing us to intentionally use our power and resources to center Health Equity in all of our advocacy.

What can 21 words do?

A lot. We were already going to be doing advocacy, awareness, education, and storytelling. We were already going to use our social capital, financial support, networking, and other resources for something, that’s why you’re here right now. Every event we attend also wants to use those things. The pledge allows us to combine our efforts, to maximize our impact around the urgent unmet need of Health Equity.

Four Facts of Breast Cancer Life and Death Speak For Themselves

Okay. I see your point! What are these 21 words?

“WE PLEDGE TO ONLY PARTICIPATE IN INITIATIVES – ADVOCACY PANELS, ADVISORY BOARDS, PLANNING COMMITTEES, PROGRAMS, THAT INCLUDE THE EXPERIENCE OF AFRICAN AMERICAN WOMEN.” 

Part 2: What Does The Inclusion Pledge Partnership Mean For Advocates? Here’s what the community had to say.

Q1. For those who have taken the #InclusionPledge: what motivated you?

Q2. If you’ve taken the #InclusionPledge: what actions you have taken so far?

Q3. For those who have taken the #InclusionPledge: what actions have you have committed to take?

Is that it?

Nope! Now it’s time to get going. Let folks know that if they want you they need to bring Black women too. And, if they’re not sure where to find them you and Tigerlily Foundation can help.

#TLCTransform Chat: Do Black Lives Really Matter Everywhere? Equity, Access, and Advocacy in Cancer

The Tigerlily Foundation hosted #TLCTransform Chat: Do Black Lives Really Matter Everywhere? Equity, Access, and Advocacy in Cancer, on June 17th, 2020. An impressive panel of patient advocates, physicians, and researchers explored the themes of health equity, access, and advocacy in the context of cancer treatment and how these three factors intersect with outcomes for Black patients.

T1 Health Equity: what is it and how does it apply when it comes to Black lives and cancer?

What is Health Equity?


In a report designed to increase consensus around meaning of health equity, the Robert Wood Johnson Foundation (RWJF) provides the following definition: “Health equity means that everyone has a fair and just opportunity to be as healthy as possible. This requires removing obstacles to health such as poverty, discrimination, and their consequences, including powerlessness and lack of access to good jobs with fair pay, quality education and housing, safe environments, and health care.”

May 1, 2017 Publisher: Robert Wood Johnson Foundation
Author(s): Braveman P, Arkin E, Orleans T, Proctor D, and Plough A

https://twitter.com/DrMoniqueGary/status/1273411356088303617?s=20

T2 Access to health care: Black patients face barriers. This includes access to meds, to treatment centers, transportation, clinical trial education, financial toxicity etc.

The community agreed that social aspects of health resource allocation profoundly shape how Black patients experience cancer treatment, but that’s not the only force shaping outcomes. The availability of points of care and the means to enter them isn’t enough to make access happen. Social Determinants of Health and unhelpful mindsets reach right into treatment and support spaces. Everything that happens to patients and their communities happens in society, and that can’t help but matter.

T3 Advocacy: Patient advocates, caregivers, advocacy organizations, and many clinicians are tireless advocates working to help strike down barriers to access and equity.

Advocates make themselves conspicuous and consequential wherever decisions about health are being made. In their view, this should include medical research, support for patients and care partners, funding, advancing awareness, and anything else that could possibly effect health.

Key Community Insights

The community offered a sobering analysis of the life and death struggle patients and care partners face without adequate health equity. There are no cheat codes to beat the crushing impact of racism, sexism, poverty, stigma, or other thieves of health equity. And there is no time to lose. Each of these tweets contains its own urgent call to action because patients are sick now and help can’t wait.

https://twitter.com/DrMoniqueGary/status/1273407638064246786?s=20

Why Celebrate Juneteenth?

Juneteenth is known as a day of celebration for the freedom of African Americans from slavery dating all the way back to 1865. 

Why is Juneteenth an important day?

Because freedom took another step towards the new world, and one more crime against humanity was cancelled and set to rights. Juneteenth celebrates this great event and the changes made for the future of America. 

However, recent world events highlight the systemic racism that runs deep and affects every aspect of the lives of people of color. As an organization dedicated to ending disparities in our lifetime, Tigerlily Foundation recognizes that in order to end health disparities, we must see change in those people and systems that show inherent disregard for life, which cannot go unaddressed. Change must occur by holding those accountable – who either by action or inaction – contribute to the loss of life for people of color.

The facts are startling – black women are often diagnosed at later stages when treatments are limited, costly and the prognosis is poor; black women are often diagnosed at younger ages and have more aggressive breast cancer; have 40% higher mortality rate; are often diagnosed at later stages when treatments are limited, costly and the prognosis is poor; black women are often diagnosed at younger ages and have more aggressive breast cancer; and Black women have 39% recurrence rate.

How can you celebrate Juneteenth in the Breast Cancer Community?

While great strides have been made to help bring ease and understanding between people of every race, only an appreciation for the difficult past and working together to change the future will really bring about the completion of what started in 1865. Juneteenth is your opportunity to address the racism that still exists in the US, and do your part in helping to put an end to it at last.

Do Black Lives Really Matter to Blue Cross Blue Shield in North Carolina?

You would think that in this era of the COVID-19 pandemic, health insurance companies would exercise responsibility and be hyper-sensitive to at-risk patients, those with co-morbidities, and especially those being treated for cancer. Well that is clearly not the case with Blue Cross Blue Shield in North Carolina. In a recent notice to policy holders, effective July 1, 2020, Blue Cross Blue Shield will no longer cover the cost of white blood cell growth factors, which are administered in conjunction with chemotherapy treatments, unless “the patient has a documented life-threatening side effect that required medical intervention.”

As a Survivor who has had two tours of duty on aggressive chemotherapy for Triple Negative Breast Cancer, let me break down to you what this really means for cancer patients.

Chemotherapy kills cells throughout your body, significantly weakens your immune system and puts the patient at high risk for viral and bacterial infections.  When I was on chemo, my oncologist highly recommended that I wear a mask in public settings, avoid close contact with people and wash my hands frequently to avoid germs that could cause an infection and put my life at risk.  Sounds similar to COVID-19 restrictions, right?  Well, additionally I was given an essential medication immediately after chemo to enhance my white blood cell growth (white blood cells fight infections) so my body could rebuild my immune system more rapidly and help me recover safely prior to my next chemo infusion.

That white blood cell growth medication must be administered exactly 24 hours after chemotherapy and is most effectively delivered as an on-body injector that is administered while a patient is at their chemotherapy session. The medication, Neulasta® Onpro®

(pegfilgrastim) is necessary to decrease the incidence of infection.

All this to say that this medication Neulasta® Onpro® is no longer covered in North Carolina by Blue Cross Blue Shield.  The impact of this is significant as follows:

  1. The patient (now with a very compromised immune system) would have to come back to the germ-infected, COVID-prevalent hospital 24 hours after chemotherapy putting them at severe risk as they potentially take public transportation and sit in a compromising hospital waiting room.
  2. If the patient travels back to the hospital for the shot, they may be further exposed to COVID-19 and could then spread the virus to their family members.
  3. An immune-compromised patient with lower income may opt not to come back for this life-saving medication they can’t afford the additional cost of transportation back to the hospital. 
  4. The immune-compromised patient may have to pay for the drug out of pocket, since it will be administered at home.
  5. Lastly, the immune-compromised cancer patient may have co-morbidities, like high blood pressure (40% of Black women have it) and diabetes (1 in 4 black women 55 years and older have it), the risk for getting COVID-19 is elevated.

At a time when most medical professionals, healthcare providers, policy-makers, corporations, industry leaders and even the government are working diligently to keep people safe, it is shocking to think that a company as large as Blue Cross Blue Shield would put patients at risk in this unnecessary manner.  If the issue is to reap a cost savings, it seems counter-intuitive, as it  would be more costly if and when patients are exposed to and contract COVID, get hospitalized, be subsequently put on ventilators and use a lot more resources.  And how about considering those that will die as a result of this decision, both patients and exposed family members?

Dr. Monique Gary, breast surgical oncologist and health disparities advocate notes that “The early population data already shows that up to 50% of cancer patients and survivors have had some impact to their health care due to the coronavirus.  They are struggling with changes in their treatment, financial woes including loss of wages and health insurance, compounded by fears about interruptions in continuity of the life-saving care they need, making it a moral imperative that we not sit by idly and allow cancer treatment to be placed on the back burner. The novel coronavirus has had a major and disproportionate impact on African Americans, especially, and compromised immunity during this pandemic increases the risk for mortality in this vulnerable population. We need every resource in our armamentarium available for our patients.”

The mortality rate for breast cancer in Black women in North Carolina is 43% higher than white women. More than 200,000 Black women in the state get breast cancer each year.  With this new ruling in place, the mortality rate will escalate. Is that what you want to have happen Blue Cross Blue Shield?  Is North Carolina your starting point to doing this nationwide?  And to the health professionals in North Carolina, are you just going to do nothing and let this happen? Does Black Health really matter?  Do Black Lives Matter?  Apparently not in North Carolina.

Maimah Karmo, Founder, President, CEO of Tigerlily Foundation says, “We live in an unprecedented time in the history of our country where it is evident that the color of people’s skin affects health outcomes.  Outdated systems and systemic change must be made in order to prioritize how black women’s lives are being impacted.  Blue Cross Blue Shield is in a position to join other leaders in ensuring that their policies promote health equity for a population who is most adversely affected.” 

On my path to live my purpose to eradicate #BlackBreastCancer, I will continue to look at all practices and policies that impact our health.  I encourage all to do the same. Unfortunately, where you live still impacts whether you live. If you live in North Carolina and have breast cancer, make sure you get health insurance that will cover all of your needs.  If you live in North Carolina and don’t have breast cancer, check your policy just in case. Don’t put yourself in an at risk position.  I live in Maryland and pay an exorbitant $860 per month for Care First (Blue Cross Blue Shield) health insurance.  For the record, I did check my policy to see if this ruling will impact me. Being a Black woman, I do have a 39% chance of recurrence.  When I called CareFirst to ask about my coverage, I was told that with a special request from my oncologist and approval from the CareFirst (Blue Cross Blue Shield) Specialty Team, I “should be” covered for Neulasta® Onpro® should I need chemotherapy again. That doesn’t sound convincing but it’s not unexpected that we will always have to advocate for ourselves for the best treatment.  I do have great concern for my Breasties in North Carolina and pray that Blue Cross Blue Shield reverses this life-threatening decision and does not implement this policy to other states.

Ricki Fairley
#BlackBreastCancer

#TLCTransform Chat: Pivoting, Partnerships, and Purpose During and After #COVID19

The Tigerlily Foundation hosted  #TLCTransform Chat:  Pivoting, Partnerships, and Purpose During and After #COVID19, on May 20th, 2020.  An expert panel joined a diverse cadre of patients, clinicians, advocates, and other breast cancer stakeholders in an exploration of a care environment disrupted by COVID-19 and what’s being done to meet the needs of patients. 

The Panel included:

  • Tiah Tomlin, Co-Founder and Executive Director, My Style Matters @MyStyleMatters2
  • Maimah Karmo, President, Tigerlily Foundation @Maimah
  • Jesus Anampa, Oncologist, MD, MS  @jesusanampa
  • Gil Morgan, Oncologist, MD 
  • @weoncologists 
  • Liza Bernstein, Patient Advocate @itsthebunk.

There was widespread agreement that the COVID-19 pandemic has shaped every aspect of how patients experience breast cancer, but direct patient care and psycho-social needs have been especially affected by disruption and adaptive responses. 

T1 The Pivot: the COVID-19 pandemic has forced us all to stop and adapt and do things differently, for better or for worse.

The pandemic finds each stakeholder with a mix of old and new responsibilities with diminished certainty about how to get things done

Clinicians are responsible to provide care in the context of new personal risks and the possibility of covering patients for peers who might fall ill. 

The serious risks and strain posed by COVID-19 has disrupted the scheduling of tests and increased the use of telemedicine.

Creative and flexible approaches to treatment modalities help clinicians assure continuity of care for their patients. 

Lockdowns may give the impression that nothing is happening, or that life is canceled. Nothing could be further from the truth. Breast cancer doesn’t stop, and neither do Patient Advocates like @swaggsheila1

Advocates like Liza Bernstein continue their work with higher levels of personal stress and demands for their help. They rely on technologies as physical travel is off the table.

Some patients in treatment and recovery can’t do without the technology that supports their telemedicine and community support. 

T2 The Partnerships: with the COVID-19 pivots we just discussed, like with any difficult situation, we know that partnering is one way to find our way through.
The relationship with patients is why we’re here. We must center it in all that we do.

Partnerships improve the resilience of our work.

Advocacy groups should improve their efforts to reduce duplication and overlap as much as possible. 

Approaching partnerships with an abundant mindset goes a long way in our world.

T3 Our Purpose: When we encounter big changes, it often causes us to think about our purpose in life. Is this new environment of the pandemic transformative for you?

The pandemic is a tragedy, and it’s inappropriate to overemphasize its potential as an agent of change without keeping that in mind. Each pivot and every hard won drop of resilience comes from human suffering. The depth and diversity of our chat’s participants engaged this challenge by offering a clear vision of a better healthcare system shaped for the better by the lessons of COVID-19. This system is more compassionate about trauma, more equitable in terms of social determinants of health, and responsive to the desire for telehealth. 

We find our purpose in the circumstances we face. Big moments call for big efforts.

COVID-19 reminds us that compassion is the center of all that we do in this space.

Working to reduce resistance to wearing masks and other essential public health measures is an important community based way to manage stress for immunocompromised patients. Changing our culture is the help.

We all rely on meaningful connections to receive care or carry out our work. The pandemic is challenging us to bring our best selves to this moment in new and authentic ways.

Participants concluded by sharing their purposes in ten words or less:

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

YouTube player

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

It’s A New Day For My TNBC Breasties

When I was diagnosed with Triple Negative Breast Cancer (TNBC) and told I had two years to live, eight years ago, I asked my doctors, “Why isn’t there a viable therapy for Triple Negative Breast Cancer? Is it because it only represents 15% of breast cancers? Is it because the mortality rate is so high, and the patients die very quickly?  Is it because TNBC over-indexes among African American women? Why doesn’t TNBC get the attention from pharmaceutical companies for research investment?” It probably was all of the above at the time.

A Triple Negative Breast Cancer diagnosis is devastating. To date, there have been no TNBC-specific treatment options and TNBC is the only breast cancer sub-type that does not have a drug to prevent recurrence. According to the only national study conducted for TNBC and Black women (Lia Scott, Lee Mobley, Tzy-Mey Kuo, and Dora Il’yasova, CANCER), African American women have 2.3 times higher odds of being diagnosed with triple negative breast cancer.  And, among women who were diagnosed with breast cancer, those diagnosed at late stages were 69% more likely to have triple negative. 

Metastatic (Stage 4) Triple Negative Breast Cancer (mTNBC) is an aggressive cancer with one of the poorest prognoses due to a lack of existing treatment options. The 5-year survival rate is less than 30%. I have too often seen the debilitating impact on the quality of life for my Breasties (the name I call my Breast Cancer sisters) with late-stage cancer who have had an extensive treatment history.

Well, someone at Immunomedics must have heard me whining and went to work to find a solution and I am thankful that I am blessed to be here to see this day.

Trodelvy from Immunomedics is here!  This new drug will give the precious gift of time to my metastatic TNBC Sisters. As an Ambassador for the Immunomedics Live Humanly Campaign, a social media platform for cancer warriors and survivors, I’ve been blessed to meet several Breasties who participated in the clinical trial research and watched them go from struggling with their disease to thriving and living their best lives. I watched Trodelvy give them light and hope and the most precious gift of time.

Trodelvy is the first FDA-approved ADC treatment option for patients with mTNBC who have received at least two prior therapies for metastatic disease. This new treatment option brings hope to our mTNBC Breasties and their loved ones. Trodelvy allows for our warriors to maintain a consistent treatment regimen for a longer period of time, with relatively manageable tolerability, giving them a good quality of life.

“The Triple Negative Breast Cancer community is encouraged by the launch of Trodelvy. Time and hope are precious gifts for our metastatic warriors,” says Hayley Dinerman, Co-Founder and Executive Director, Triple Negative Breast Cancer Foundation.

Remarkably, 7.4% of the Trodelvy clinical trial participants were African American women (as published in NEJM).  This may not sound like a lot, but since 2015, the breast cancer drugs approved by the FDA have had 2.5% Black participation. The participation level for Trodelvy clinical trials is unsurpassed and speaks volumes for Immunomedics and their commitment to addressing the specific needs of Black Breast Cancer.

“As a TNBC patient, it was overwhelming to be diagnosed with an aggressive form of breast cancer with no targeted treatment,” says Maimah Karmo, President and Founder, Tigerlily Foundation. “For 14 years, as a patient advocate and leader, I’ve been committed to helping patients get the right treatments when they need it and until now, we have had no treatment for TNBC MBC patients.  Thanks to Immunomedics, we now have Trodelvy, which will make a difference in many lives.  We are thrilled for the many patients who now have hope and a new treatment option.”

Immunomedics is a change agent and Trodelvy is a game changer.  As a very blessed TNBC survivor, I embrace my responsibility to stand up and fight like a girl for my Warrior Sisters. Let this be a message to our TNBC community that many prayers have been answered!  Help me spread the word that Trodelvy is readily available and will give my TNBC Breasties the opportunity to live their best lives.  Ask your doctor Breasties and get more information at Trodelvy.com.

Mental Health Awareness Month

Mental health is essential to everyone’s overall health and wellbeing, and mental illnesses are common and treatable. While 1 in 5 people will experience a mental illness during their lifetime, everyone faces challenges in life that can impact their mental health. Recognizing your feelings, finding the routines that lift you up, removing toxic influences and connecting with others can all help you on your path to recovery as you develop your own mental health tools.

Having Breast Cancer and Managing Mental Health:  It is important to be cognizant of mental health after diagnosis and during treatment. It is important to recognize that each woman’s journey is different and that being diagnosed with breast cancer can affect your mental health and that of your loved ones.

Some of the most common psychosocial concerns reported by women with breast cancer include:

  • Fear of recurrence,
  • Physical symptoms such as fatigue, trouble sleeping, or pain,
  • Body image disruption,
  • Sexual dysfunction,
  • Treatment-related anxieties,
  • Intrusive thoughts about illness/persistent anxiety,
  • Marital/partner communication,
  • Feelings of vulnerability, and
  • Existential concerns2 regarding mortality.

Managing mental health can make it challenging to do things that benefit your health, such as eating healthy foods, exercising, connecting with friends and family, and complying with medical treatment. However, the good news is that breast cancer and its emotional impact such as feelings of depression can lift over time, and the level of anxiety is likely to decrease.  However, it is important to note that if you feel anxious or depressed, ask your healthcare team for a referral to a mental health provider.  Taking care of your mental health should be a priority.

Join us for a series of virtual events designed to bring you practical tools to take action now towards a more balanced life!

Join us for a conversation on creating a healthy self care routine with Maimah Karmo and Esther Boykin

By taking care of yourself, you are encouraging a more empowered narrative, creating a life from a position of positive energy and creativity. The ripple effect of this type of action, no matter how small or large, positively impacts those closest to you on many levels.

About Esther Boykin: In 2004 with Master of Science from Virginia Tech and a vision of making mental health widely accessible to all, Esther Boykin began her career as a marriage and family therapist. With her passion for therapy and relationships growing, Esther opened Group Therapy Associates a psychotherapy practice in the Washington, DC metro area.
Now, nearly 15 years later, GTA has grown to include multiple office locations and Esther has extended her reach to other projects to further her mission for healthy relationships and accessible modern mental health. As CEO of Group Therapy Associates, Esther launched Therapy Is Not A Dirty Word, which hosts events and retreats and is also engaged in philanthropic efforts with Sidewalk Talk and Black Love Industry Professional (BLIP). She also co-hosts With That Being Said, a podcast with Erica Turner, and is featured regularly as an expert on shows like Good Morning Washington and the Real Housewives of Potomac.

Join us for a conversation on finding peace in life’s storms and challenges with Patricia Fox

Life can present challenges that can sometimes feel disheartening. Spend some time with me as I share mindful meditation that will assist you with balancing your energy in times of chaos.

About Patricia Fox: Patricia Fox, also know as The Pink Sistah, is a young breast cancer survivor diagnosed in 2013 at 26 years old. Today she is a cancer advocate for young adults affected by dis-ease, offering beauty inspiration and wellness information.

About Mike Fanelli and Tanya Walker: Mike Fanelli and Tanya Walker are the Founder of the Alive and Thrive Movement. We know what it’s like to lack fulfillment and to experience feelings of inadequacy, guilt, anger and rejection that result in relationship breakdown. Something we both strongly identify with. If you are feeling misunderstood, disconnected and desire relationships/connections you are 100% in the right place. Our approach will transform how you attract others by meeting yourself in ways you never have. What is the best way to get what you want?  Be exactly who YOU are looking for!Invest in the most important person in your life – YOU.

Join us for a conversation on supporting cancer patients to live life now with Maimah Karmo and Angela ‘Jersi’ Baker

Most women experience at least some psychosocial distress during the course of their breast cancer diagnosis and treatment. The level of distress varies from woman to woman and, within an individual, over the course of diagnosis and treatment. Angela ‘Jersi’ Baker, Founder of Angel in Disguise, serves to support people battling cancer, affectionately called V.I.D.A.S. (Victorious, Inspired, Delicate, Angel, Survivor) with tasks they are unable to complete alone. They focus on breast cancer survivors and their families, helping them adjust to lifestyle changes and maintain hope so they can ‘live life now’.

About Angela Jersi Baker: Angel in Disguise was founded in 2015 by Angela Baker, a three-time breast cancer survivor who is currently living her life to the fullest with stage IV metastatic breast cancer. After her third diagnosis, Angela decided it was time to leave her job to focus on her health and helping other people. Soon after, she received a call from another woman fighting breast cancer asking for a ride to the doctor. She needed someone to not only to drive her but support her through the difficult treatments. Angela knew the hardships of fighting cancer and was there for her. She started handing out business cards at cancer institutes and receiving more calls from patients who needed transportation. It was then that Angela realized her passion for supporting and inspiring other cancer patients throughout their journey. She founded a 501(c)3 organization entitled Angel in Disguise Inc. to provide transportation and support to breast cancer patients in Charlotte, NC. There is an enormous barrier and racial disparity in health care, making it difficult for certain cancer patients to gain access to quality care and transportation. Angel in Disguise is bridging that gap. In 2018, AID helped eliminate the transportation barrier in Mecklenburg and Cabbarus county by providing 2,822 complimentary transportation miles and 180 waiting hours to cancer patients in need. So far in 2019, AID has driven 1,276 miles and provided 116 volunteer hours to underserved and underinsured cancer patients. Most patients are driven by Angela herself, a STAGE 4 Metastatic breast cancer patient.

Brought to you by the Pure Cat Initiative:

Tigerlily Foundation’s Pure Cat Initiative was launched in honor of Catherine Odderstol, a sassy yogi, who danced through life, spread light and joy with everyone she met, and who left us the gift of her eternal gypsy soul.  Cat was dedicated to helping others have a mind, body, spirit approach to health and wellness.  Cat has inspired us to honor her SPIRIT legacy, by offering patients, caregivers and loved ones access to programs that inspire them to light up life, focus on faith not fear, and as she loved to say, “Let Love be Your Frequency”.   

Click Here For Our Pure Cat Schedule

“Let Love Be Your Frequency”


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.

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

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