14 Yr MBC HER 2+ Breast Cancer Survivor. Bringing racial disparities and clinical trials to the conversation. 25 YR AF Veteran. BA/MBA Komen Scholar, Medidata
It’s treatment Monday. I’m on my gazillion million treatment. Same oncologist, same cancer center and always on Monday’s for 13 years. Sometimes I gotta pat myself on the back & thank my body for fighting. Still can’t get use to needles and being poked in my port. 🙋🏽♀️🙋🏽♀️
#bcsm
Today was a day I didn’t want to go to treatment. Mentally drained. I had no choice but to push forward. I’m glad I did because I met the nicest nurse who reminded me it’s ok to cry. Shoutout to all the nurses. You don’t know the huge impact you have in my life. I love U. ❤️❤️
1st treatment of 2023. God is still performing miracles. Today is my moms birthday. MBC stole her from me in 2004. I miss my best friend. I always say she would be the only one that would understand me and this cancer journey. I know she’s telling God..that’s my baby. ❤️
#bcsm
First day of new treatment. I’m on CMF (cyclophosphamide methotrexate and fluorouracil) plus herceptin and perjeta. Thank you to
@stage4kelly
for explaining this and of course my amazing onc. I can’t even pronounce the chemos. God still heals. Love you all.
#bcsm
😂😂 ❤️❤️❤️
The Queen is done. Dec 2 it’ll be 13 yrs of living with MBC. I’m trusting God in all things. Yes that’s Enhertu. Platelets went up & all my blood work was green.
#veteran
#enhertu
#bcsm
I tried a clinical trial. You should too. Black women we need you. ❤️❤️ They work.👊🏽
My breast cancer story has been turned into a movie on BET. The date it will air is October 11th. This will help so many people learn about MBC and breast cancer in black women. I have a whole movie. It’s dedicated to my mom and dad. My story on BET in October. ❤️🔥🔥
#bcsm
Rest well my friend. Lisa I’ll love you forever. 😪😪😪😪😪😪 Sometimes advocacy sucks. Meet so many people then you find out on SM they are gone. Can’t stop crying. 🖤
Just had my 6 week scan and this chick is still stable. She said you are very stable. Such good news. Clinical trial is still working. 18 months on the trial. Thank you God.
#clinicaltrial
#resesrch
#enhertu
#ds8201a
Thanks researchers. ❤️❤️❤️❤️
I had my 6-week scan yesterday and I am still stable with no new cancer. Started trial July 2018. Clinical trials work and that's why its so important to have black women apart of your research from start to finish. Thanking GOD for his miracles. 😍
#ds8201a
#ENherTU
I had my 3 mth scan Fri & I'm still stable. Clinical trials work. It will be 3 yrs at the end of July that I have been on trial. Representation matters. We need to continue to have open conversations about clinical trials and how we need them in the black community.
I finally got to see my nephew
@Lastname_Baker
play n NFL game. I thank God for days like these. He plays for the Miami Dolphins.
#55
He had 2 sacks and 9 tackles against Cincinnati. So proud of him. ❤️❤️
I have been living with MBC for 3,699 days. 😪😪 Diagnosed at 43 and now I’m 53. My Mom died of MBC n 2004 then I was diagnosed five years later.
#cancersucks
Thanking God for all that researchers are doing to keep me and other MBC patients alive. I miss my mom. 😪😪
Last week I had cycle 45 of
#ds8201a
. I had to sign another informed consent. Yes it was longer than the other 4 😂My doctor is so proud of my results and I am too. Clinical trials work. Let’s make them accessible for all. I won’t stop until they are. 🤷🏽♀️🤷🏽♀️
#clinicaltrialsday
Medically retired because of cancer. I cried so hard when they told me. At the same time they said you go and take care of your health. I worked hard for everything in my shadow box. My flag was flown at the White House. Pres Obama signed my retirement certificate. ❤️❤️
#veteran
We are both MBC. We want to live longer. Include black women in clinical trials. Black women are dying of breast cancer at a 42% faster rate. Make trials so they are accessible to all. ❤️❤️
I AM STILL STABLE July 2018 is when I started the trial.
Scan shows no new spots and not only did she say stable she said very stable. This is why it's vitally important to engage black women in CT recruitment. Need to no how medicines will affect all races.
#ds8201a
#enhertu
Received results from 6 wk scan and I’m still stable. Cried tears of joy..hopefully my story will educate black women/men that clinical trials are okay and to teach researchers that we need to be included in CT research so ask us.
#ds8201a
Cycle 41 Monday. ECHO on Thursday.
My oncologist recommended me as a patient advocate to a research team at Washington University to study metastatic breast cancer care coordination to improve health equity. I told the young lady that called if she recommends it I’m ALL in. ❤️❤️❤️❤️
Went for IV fluids today. My nurse goes you look miserable. I said I am. She looks at my stomach sees I’m bloated. She says I’m so sorry. I said it’s from the chemo. Nurses are so compassionate. She made me feel better. Once she gave me zofran instant relief. I ❤️ my nurses.
Trying to hurry up and make a TikTok before my doctor walks in. I love life and all that it has to offer. Some good some bad. But oh well. I’m still going to dance.
@Beyonce
@LivingBeyondBC
@SusanGKomen
Make a TikTok with one of your patients. Another extension of love.
My daughter surprised me with this painting for my 11 years living with MBC anniversary. I woke up and thanked God for my many blessings and had a good day. I cried a little too. ❤️❤️❤️❤️ 👑👑👑👑👑
Interview many months ago for Oprah mag. This is the message I got today. 💪🏾💪🏾💪🏾💪🏾
As part of our launch, the Hearst editors have confirmed your feature story will be in the September print issue of Oprah Magazine, which will go on sale August 11th. We can’t wait to see it!
This is the part of BC that people don’t see. My platelets are low so I get nose bleeds. I pulled up to an event today and blood everywhere. At first I was going to turn around but I cried prayed and it stopped. Luckily I had an extra shirt n my car. Life of MBC. 😪😪
This is my mom. Cancer stole her from me in 2004. Five years later I received the same MBC diagnosis. She’s my everything. I will be her voice. ❤️❤️❤️ She is what motivates me to get up and fight. I can’t enact change if I’m not apart of the change. Forever my GIRL.
It’s treatment Monday. Have a good week.
#enhertu
#bcsm
Love my oncologist and nurses.
#researchsaveslives
Remember you are beautiful just the way you are. Own that. ❤️❤️❤️
I get vaccinated tomorrow. I get the Johnson & Johnson. One and Done. I’m so nervous that I started crying. I will feel much safer once it’s done though. I probably won’t sleep tonight. If I could bite my acrylic nails off they would be off by now.
#GetVaccinated
Thurs will be my umpteenth scan & Wed will be 11 yrs since my "you have stage IV cancer day". Wishing my mom would have had the same medicines. Thanks to my great medical team CUZ it has taken a VILLAGE to keep me alive and to my awesome support tribe.
#hope
#love
#BUTGOD
How I walked out of my doctors office today. Celebrate small victories. I couldn’t get treatment last week because of low platelets & potassium. My Dr said my body was tired after 3 years of this drug. So after a lot of bananas lol I received cycle 51 today.
#dance
#keepswimming
Neulasta shots. My nurse said yeah you gotta give yourself a shot. I said no. She says well you gotta come back in.I said ok but I was talking to someone and I can get a patch that does it. She said depends on your insurance. Insurance approved. Give patients all options. 🙋🏽♀️
Look Ma I made it. It was nice to see myself at ASCO wearing an underarm wearable for Blue Spark Technology. The patient voice matters.
@Medidata
I love my Medidata family.
#bcsm
👊🏽👊🏽
Good news. Still stable. 21 months on the trial. So glad I decided to go on the trial. Side effects suck big time but it’s all worth it.
#itwillhelpotherslive
❤️❤️❤️
#ds8201a
#enhertu
Cycle 32 tomorrow. That extra week off felt so good. Two weeks with no nausea. Scan and ECHO coming up. 10 years living with MBC. Thanking God for life. My mom died at three years with MBC. I get my strength from her.
#herlegacy
#ds8201a
#enhertu
#FDA
I served my country for 25 yrs 4 mths and 27 days proudly & without hesitation. 🇺🇸 🇺🇸 I would have given my life for anyone whom I served with if I had too. That’s all we know & that’s how we serve. We sacrifice everything we have for others so you can be free.
#Veteran
💪🏾💪🏾
13 yrs ago on Dec 2 2009 I walked in for a mammogram on Scott AFB IL at the 375 Med Gp & walked out with MBC. I have been living with MBC for 4745 days with over 450 appointments. Thanking this clinic today for helping save my life.
#bcsm
❤️😊 I went today for a pic.
#veteran
Dreams do come true. Got to meet the amazing
@fumikochino
. Your talk on financial toxicity was enlightening. “1 in 20 Black or Latino women with early stage breast cancer lose their homes due to cancer related treatment.” We have to do more.
@SABCSSanAntonio
First round of radiation today on my shoulder completed. Five more to go on my neck. One of the scariest moments in my life. The mask over my face was the worst but I did it. Small victories. 💕💕
#bcsm
I was Wonder Woman today. 💕💕
Welp ENhertu has stopped working. Small progression in my liver and ribs. New biopsy and going on a new trial. I love my onc. She hugged me and said you know I’m going to take care of you as I balled in her arms. I had a good run though with Enhertu. Thanking God.
#bcsm
Hubby and I celebrated our third anniversary. Never thought I would find love or anyone would love me with MBC. It was the bald head that did it. As my mom would say never give up on love. God has a plan. ❤️❤️❤️
I enjoyed serving my country for 25 yrs, 4 mths and 27 days. Cancer had a different plan though. Crying in this picture at retirement because I had to retire. It turned out GOD had different plans for my life. Continue to serve others by being there voice.
#veteran
#veteransday
My book is finally out. I am so excited. Released on Aug 17th to honor my mom as she died of MBC 19 years ago. Order on Amazon or on my website I talk about my upbringing, my military career and my MBC diagnosis. Get yours today.
#veterans
#breastcancer
Of course I gotta thank my wonderful oncologist Dr Cynthia Ma. 13 yrs strong we like two peas in a pod. This an old picture so no mask. I call her my Ride or Live. She’s my angel from God. I told her she can never leave and she always laughs and go oh Sheila I’m not. 👊🏽👊🏽
Stable Stable Stable Music too my ears. My first scan since starting
#enhertu
#ds8201
a second time after stopping for COVID pneumonia last year saysssss STABLE. God is so good. Best Christmas gift ever. 💪🏾💪🏾💪🏾💪🏾
#clinicaltrials
#bscm
I lost my forever friend my Dad 2 months ago. Feels like yesterday. He came to every promotion, award ceremony there was. He always beamed with pride. He loved that I served in the military. Missing him and my mom like cray cray. Hug your parents. Love and hold them near.
Today is my Mommy birthday. Breast Cancer stole her from me. This is a tattoo I got with her handwriting from one of the notes she would write me while I was n the military. Every advocacy every speech every award is dedicated to her. I truly miss my soul mate. 😪😪
My friend Jacqueline Breedlove has died of MBC. She had been fighting cancer for 23 years. I had just talk to her over FB and she said Sheila you make chemo look easy. I told her I cry all the time. Going to miss her smile. This is what makes life hard. 😪😪
#storyhalftold
I worked on this with the FDA focus group last year and it is finally live. We have made the clinical trial language used more patient friendly. So proud to continually use my voice to help others. Yep I’m crying. 👑👑👑
I was just invited to a round table discussion with a pharma company at ASCO and this is the shirt I will be wearing. 🙌🏾🙌🏾🥰🥰
#patientvoice
#bcsm
💪🏾💪🏾💪🏾👊🏽👊🏽👊🏽👊🏽 I am the table. ❤️❤️❤️💕
The new
@oprahmagazine
is out. Thanks to
@pfizer
&
@GMA
for bringing MBC to the forefront & allowing MBC patients to have a voice. Pick up your copy. MBC is the cancer that kills. MBC stole my mom. “Cancer is not about me but who I can help.”
#thanksoprah
#findyourmbcvoice
I was featured in CEO Mom Magazine for their Fall 2020 Edition. You can click on the link to read my full story. It's always important for me to share my story and leave my legacy. I hope you enjoy it. Thank you CEO Mom for this great feature.
Despite nausea my scans are still STABLE. DS8201a is still working. Introduce or start a conversation with your patients about clinical trials just to let patients know all of their options.
#patientsfirst
Lets enroll more black patients into clinical trials.
#ittakesavillage
Still Stable and no new spots. Port will have to be replaced. He said 9 years was a good run for a port. Clinical trial is working good. Thanking God and my medical team of doctors for my care. Big relief. These six week scans are nerve wracking. 😊😊
I am not a “loser” or “sucker” for giving my country 25 years of good and faithful service. Protecting and serving so others can be free. Thank a veteran today. 2️⃣5️⃣🇺🇸🇺🇸🇺🇸🇺🇸
#VeteransAgainstTrump
Started trial
#ds8201a
on July 13th 2018 cuz of progression on 4th rib. Scan shows I’m still STABLE. I’m on my 17th scan since starting trial. I do this to help further research, help women/men with MBC and help black women. Thanking God for his grace. ❤️❤️ Cycle 33 today. 💪🏾
Here is the trailer for my upcoming movie God's Grace The Sheila Johnson Story October 19th at 7:00PM ET/6:00PM CT on
@BET
@betplus
I'm so excited for this movie that will highlight my breast cancer journey plus highlight breast cancer in the black community. Check it out.
#bcsm
Cycle 35. Doctor is going to have me come in twice next week to combat the nausea with the zofran fluids and steroids. We are staying the course. ❤️❤️ God is in the miracle business. Wish my mom would have had these medicines when she was diagnosed. 🥰👑👑👑
Still nursing my femur. My sister has been here for the past two weeks taking care of me. She’s leaving Wednesday. 😪😪 4-6 months recovery but you know I’m pushing forward. 🥰🥰
I have ventured into selling real estate. It’s a joy seeing the smiles of first time home buyers. My dream is to build a SWAGG house so BC patients can come and relax after treatment. Chef, massages and mental health. God keeps giving me visions. ❤️❤️🏠🏠
One of my MBC friends died last wk. She had TNBC. Her last text "Sheila I think they misdiagnosed me". She's black. I walked her thru every CT process and the one she was on the SE were so bad she had to get off. When are medicines going to stop failing MBC patients? 😢
Queens 👸 4 of us have MBC and 2 are early stagers. We still love on each other and provide support for one another. We all stand together to end disparities.
#weareone
#lovethem
Guess what cycle 46 today. I love seeing my oncologist smile. Clinical trials work. Oncologists please mentioned trials to your patients and explain what they are. Your patients will love you for it and thank you tremendously. Big hugs. 💪🏾💪🏾🥰💕💕💕
#clinicaltrials
ds8201a
Today is the day I lost my mom to MBC 16 years ago. The tattoo on my arm is her handwriting. There’s not a day that goes by I don’t think of her or miss her. I told someone “I tried” she told me No Sheila “You make SHIT happen.” But Yet I persisted. Call your mom TODAY.
Waiting for nausea meds. Have a good day Kings and Queens. Thanks for all you doing to make this world a place where there is no more cancer. I see you. You are making a difference. 👑👑👑 Hug someone today even if it’s a air hug. They may need it. ❤️❤️❤️
I’ll miss you LaTonya. Cancer doesn’t play fair but you gave life all you had. LaTonya is at the end on the other side of me. Army vet & 3 time cancer survivor. I will carry your angels on my shoulders to fight even harder. It’s getting heavy. 😪The heavier the harder I fight.
I have been off Twitter because I went to Dubai on a mother/daughter trip. I experienced things like never before. I even rode a camel. It was such a great experience for my daughter. I have chosen to not just be alive but to LIVE.
#selfcare
#passportstamped
❤️❤️
7 yrs ago today I received my MBA from McKendree Univ. Statistics was my last class. I was nervous I didn’t pass. 😂😂 I didn’t let cancer stop me from achieving my dream. My daughter said “Mom you can do it.” Proud of myself. Do something you’ve always wanted to do.
#bcsm
Scan Day. My cancer center has new machines. They light up when you go through. Love my cancer center. My good report is already prepared by God. 💪🏾💪🏾👑👑❤️❤️❤️
#survivor
#lifeisgood
Tomorrow a press release will go out to officially introduce the Find Your MBC Voice program, and spokesperson Meredith Vieira will be featured on Good Morning America to discuss the initiative. Watch GMA tomorrow. I will be featured in this series.
@GMA
@oprahmagazine
@pfizer
So grateful I had the opportunity to see Dr Susan Love at the Symposium in January. I gave her a copy of my book. My mentor and shero who I love dearly. Dr Loves book was the book I read to understand breast cancer. A true trailblazer. 😢😢😢
Cycle 38 today. Platelets were up to 93. That’s the most they have been since I’ve been on the trial. Doctor said everything looks good. Staying the course. God is faithful. ❤️❤️❤️❤️
#enhertu
#ds8201a
Cycle 48 today. My body is tired today but I gotta do what I gotta do. Thinking this week is all about relaxing. Always nice to see my angel Dr Ma. She always makes me smile. Stay strong and know that you are not alone. ❤️❤️❤️
#ds8201a
#researchsaveslives
#youareworthy
It was such a blessing to donate $3000 to Siteman Cancer Center for research. From the sales of my books & shirts everyone that brought one made this happen. Dr Lannis Hall from Barnes Jewish accepted the check after she talked about disparities. One of my WIN moments.
#bcsm
Scan
#19
tomorrow since being on the trial. Woosah...
#enhertu
Thanks
#researchers
for this medicine. The nausea sucks big time but it’s killing them cancer cells. 🙏🙏💪🏾💪🏾💪🏾💪🏾
Clinic trial DS 8201A is still doing its job. 6 week scan showed I’m still stable. It’ll be one year this July I’ve been on it. No nausea and energy is good. Last week was a different story. So blessed it’s still working. I love Dr Cynthia Ma. She’s my angel. ❤️❤️
My movie God’s Grace The Sheila Johnson Story will be out on the 19 Oct on BET+. Look at this star studded cast. Blessed to share my breast cancer story and share about clinical trials and MBC. Saving lives.
@betplus
@bet
#bcsm
#veteran
🙌🏾🙌🏾🙌🏾
Black women are dying of breast cancer at a 42% faster rate than any other race. This is not a statistic for all cities but overall. Find out mortality rate in your city and ask how you can make a difference and change statistic. I know St Louis is 42%.
#weareworthsaving
All bloodwork looked good today. My doctor was happy. We are staying the course. Scan scheduled and she gave me a new nausea med called Emend. She said Sheila you are on the strongest nausea med. Rocking my nephew team
@Lastname_Baker
#55
. Thanking God. ❤️❤️❤️
#ds8201a
I am stable. I had scans today. The clinical trail is working. The spot on my 4th rib is stable. No new spots. All the 🤮 nausea and fatigue is not in vain. I’ve been crying good tears all day. Staying the course. God is good. ❤️❤️
In 2010 I was medically retired from the USAF because of MBC. My good friend retired me. I was confused and not sure what I was going to do with my life. God guided my every step. Still here advocating for change.
#veteran