Shonte Drakeford is a 36-year-old Washington, D.C. native, nurse practitioner, United States Army wife, and German Shepherd mama. She was diagnosed with stage IV (4) metastatic triple-positive breast cancer in 2015 that metastasized to her lungs, hip, rib, spine, and lymph nodes. She also has a genetic trait for colon cancer; her cancer detection started early at the age of 25. She has been surviving and living a life without fear as positively as possible. You can follow her on Instagram.

 “You must now reinvent yourself.”

Those were the words my husband said to me when I was diagnosed with stage 4 metastatic breast cancer at the age of 31 on June 17, 2015. Not once did I think that out of all I have been through, cancer would become part of my life story.

I grew up poor in the inner city of Washington, D.C. I was a foster child surfing in and out of the social services system. I was the first in my family to obtain higher education and the first to get married. Being a military spouse, I have dealt with multiple deployments, as my husband serves in the U.S. Army. I’ve dealt with unsuccessful attempts at having a child and infertility for 5 years prior to my cancer diagnosis. I’ve moved and adapted to new environments, including Alaska, Washington, Georgia, and Korea. Yet again, after all of that, not once did I think cancer would be in my journey. Truly, who does? This isn’t something anyone wants or plans for. It’s just that I had to overcome so much to get to where I am today. So many of you reading this have, too, whether you’re living with cancer, are a caregiver, or are a support person for someone with cancer.

I am a part of a few statistics. I am one of the 6% of women who gets metastatic breast cancer as their first diagnosis, which is also called “de novo” metastatic breast cancer. I am a part of the 27% 5-year survival rate. Hopefully, I won’t be a part of the statistic of Black women who have a 40% higher rate of mortality than my white counterparts.

Learning to live with metastatic breast cancer

Living with metastatic breast cancer goes beyond the treatment room. It is a holistic approach. Having metastatic breast cancer is a lifelong disease, and it’s now a part of my new normal. My husband was right when he said that I must reinvent myself. After being diagnosed with metastatic breast cancer, I had to revamp my entire lifestyle. I once used to be able to work 12-hour shifts as a labor and delivery nurse. But after my diagnosis, I could barely work such a physically demanding job and had to get Social Security Disability Insurance (SSDI) while I had to make modifications to my career. I chose to teach childbirth education instead and finished school to become a nurse practitioner. Now, I work as a primary care provider in telemedicine.

I also can’t clean the entire house like I used to in 1 swoop. Instead, I have to clean in multiple sessions. And I have to be very careful even when I’m doing activities I enjoy, like snowboarding, as breaking bones is very easy. I broke my foot 1 summer, and it took me 2 years to get approved to snowboard again. My short-term memory is now affected, too, and I often get mental fatigue, so I must now take focus medications to help with the “chemobrain.” I also carry a small arsenal of “just in case” medications in my purse to combat the unpredictable side effects, such as nausea and pain. It’s now even more important for me to strengthen my immune system, too, as it is easy for me to get sick. That means I need to exercise more to maintain a healthy weight, because weight gain is real.

I could go on and on about how my life has changed because of metastatic breast cancer. My emotional, spiritual, physical, and intellectual lifestyle is now all connected to or affected by metastatic breast cancer.

How metastatic breast cancer can impact sexual health and dating

Sexual health is essential and is not a subject spoken much about. You and your sexual partner need to understand what may change intimately. Ask a sex expert or your oncologist what you can expect will change and how to cope or modify this experience.

I personally deal with vaginal dryness because I am in a medically induced menopause. I have a low sex drive/urge/desire, and I experience pain during sex. Realize that finding a partner if you are not already in a relationship at diagnosis is not an impossibility. Learning dating techniques and how to communicate is essential, including for those who are dating people with cancer.

Don’t ignore the health of the rest of your body

Lots of times, we tend to only focus on our cancer symptoms or think that every symptom is cancer-related. However, I’ve found that it’s important to still maintain a relationship with my primary care provider. My primary care provider helps keep me up to date on vaccinations and monitors my preventive screenings, such as colonoscopies and Pap tests. They also evaluate me for conditions such as arthritis, blood pressure, and diabetes. In my case, the medications I take for cancer have now, after long-term treatment, increased my risk of high blood pressure. Because of that, I now must take a low-dose blood pressure medication, which will help prevent me from having a blood clot, heart attack, or stroke.

Protect the health of the rest of your body. Always get your preventive health screenings and manage current and future health conditions.

Improving your quality of life

Quality of life is a term that is used a lot with metastatic disease, but it should be a common term for others too. I always go by the life motto of, “Enjoy life.” I do not take this lightly. I know there will come a time where I won’t be able to do what I am capable of doing today. This can all drastically change even in a week. Shoot, I could even be dead in a week. Cancer progression is a scary concept. At any point, the cancer can spread to other places or grow bigger in the same locations of the body, such as the lungs, brain, liver, and bones. So, I must do as much as I can while I can, until I can’t.

To other people living with metastatic disease, my advice would be to live life on purpose the way you desire. Don’t let others place what you should be doing onto you. If you want to eat cake today, eat cake, because tomorrow you may not have an appetite. If you want to travel and the risk is lower and the benefit is higher, then travel.

The COVID-19 pandemic has caused me to be more isolated, but I have been creative in how to enjoy my life. I’ve picked up gardening. I have 50 chickens, 25 ducks, and 2 German Shepherds. I sing, I dance, I speak with my friends on tons of versions of video chats, I play video games, I exercise, I meditate, and I look at autonomous sensory meridian response (ASMR) videos on YouTube to help calm my anxiety. I carve ugly owls and squirrels out of wood. I am going to randomly get a boating license even though I don’t own a boat. People ask me how and why. I say, “Because why not? What is going to harm me more than cancer?”

The only thing guaranteed in this world is death. So, until that day has come for me, I’ll live it up and do what gives me joy despite all the everyday stressors. I read daily inspirational writings on how not to care so much what others think of me. I am genuinely me.

How patient advocacy has helped me find purpose

One of my passions is helping others and sharing my perspectives on life. You never know who it may impact. Advocacy work is a part of my quality of life because I want to be that voice for those who may not have the courage to speak up on something that is or isn’t right. Representation matters. I represent for the young, the Black women, the underserved, the nurses, and the Army spouses. I am an ally for the LGBTQ+ community, the men with breast cancer, and anyone else I meet who I support their ideals. I try not to lose hope even on the bad days. I have my bad day and move on. I don’t waste precious time focusing on things I cannot control. Instead, I focus on what I can control.

I’ve learned that it’s important to advocate for myself, too. Before the COVID-19 pandemic, my husband and I would often travel, which is important to my quality of life. I made it a point to let my health care providers know that I will do my best to schedule trips around treatment, but I will not be open to shortening or canceling a trip for treatment. I also do not desire to be at the hospital for more than 5 hours each time I’m there because resting is imperative. I’ve requested not to get treatments on Mondays, since it’s the beginning of the week and I’d prefer not to start my week with anything cancer-related after a weekend of feeling cancer-free. I also choose to work on Mondays to help validate this. I make sure to see the same provider, whether it’s my nurse practitioner or my oncologist, because continuity of care is essential. I refuse to be seen by others unless it’s absolutely unavoidable.

If you feel something, say something to your provider, even if you think it’s “nothing.” Nothing is more detrimental to my quality of life than having uncertainty and anxiety. So don’t be afraid to speak up.

Resources to navigate life with metastatic breast cancer

If you are living with metastatic breast cancer, remember you are not alone. There are a ton of resources for every category of life (financial help, meal prep, career and cancer services, caregiver support, research and politics, transportation and medication assistance, clinical trial databases, spiritual support, end-of-life planning, palliative or supportive care, physical therapy, etc.). Find Facebook Groups that can help offer support. Or, use websites to seek knowledge, such as Cancer.Net, Living Beyond Breast Cancer, Tigerlily Foundation, and Metavivor. You can also attend educational conferences on breast cancer, which will serve as a good starting point.

Life has many uncertainties, but what is certain is that there is more to life than the metastatic breast cancer treatment room. It’s like looking in the mirror and seeing both sides. The injections I receive are also injections of joy in my spirit. The pills I take, there are also pills, symbolically speaking, to aid my mental, spiritual, physical, and emotional needs. Although you may need to reinvent yourself after a metastatic breast cancer diagnosis, don’t lose yourself in the process.