Why #LightUpMBC? 

By Laura Inahara, Executive Director, Moore Fight Moore Strong

Edited by Barbara Bigelow

 

I talked to my best friend Jessica every single day.  On May 18th, my phone did not ring in the morning and I did not receive any texts.  I messaged her and when I didn’t receive a response back by 9:30 a.m., I knew something was definitely wrong. She never missed saying good morning to me.  I called my cousin Matt, Jessica’s husband, and said I haven’t heard from Jess and I can’t reach her and asked if she was okay. He confirmed they were at the hospital. I asked if I should come and he said no it was okay and he would keep me informed. When I didn’t hear from him, I had an awful gut wrenching feeling I would lose my best friend that day. Out of respect for their privacy, I left them alone and waited to hear.

Later that evening, my phone finally rang but it wasn’t Jess or Matt; it was an immediate family member advising me to come to the hospital as soon as I could.  I knew by the tone of his voice what that meant in my head, but I still wasn’t allowing my heart to believe it. I got to the hospital just in time to say goodbye to her. My heart broke into pieces not just for myself, but for all who loved her which is a pretty long list.  Just three months earlier we were in the Florida Keys together on our annual vacation trip.  We were laughing, doing cannon balls into a pool and exercising every morning. It just didn’t make sense three months later she wasn’t here.  Throughout her 4-year journey with MBC, we formed Moore Fight Moore Strong (MFMS) to rally our community around Jessica and to educate the public on what we were learning about the disease.

Jessica was a best friend to me and many others, she was a nurse, a high school basketball coach and she dedicated both her life and her career to helping others. She was full of life and her strength was unmatched. She had a positive spirit and great sense of humor. She loved her family and friends deeply and she never took a minute of her life for granted. She was also a metastatic breast cancer advocate and a strong supporter of METAvivor.

Before she passed, Jessica said, “I encourage others to advocate, advocate, advocate! MBC needs more awareness and we can all bring attention to it.”  She also often said, “It’s time to make some noise!” With our #LightUpMBC campaign we are “making noise.” Jessica is our inspiration behind the campaign. We are shining a light on the disease for her and all other families faced with it.  Jessica’s light will shine down on all of us as we light over 115 landmarks in 50 states, 96 cities and 3 countries on October 13th, National Metastatic Breast Cancer Awareness Day. 

To view the illuminated landmarks across the globe, #LightUpMBC Live, a virtual benefit, will take place on October 13 at 8 p.m. EST on the METAvivor Facebook page. The virtual benefit will feature inspiring MBC stories heard from #LightUpMBC patient ambassadors at landmark lightings in their cities, as well as musical performances to help raise funds for metastatic breast cancer research.

We created the #LightUpMBC campaign because there is a lack of public awareness about what metastatic breast cancer is and the lack of funding it receives. Jessica told me prior to her passing she wanted to light a landmark locally in the MBC awareness ribbon colors of green, teal and pink to raise awareness for the disease. We wanted to educate the public. I had never heard the term MBC prior to Jessica’s diagnosis.

Here are the top 7 things I learned as my best friend's life was taken way too early from this disease. 

1. There is no cure for Metastatic (stage 4) Breast Cancer.  MBC took my best friend Jessica Moore’s life at 36 years old. There is a misconception if you are going to get cancer, breast cancer is the best one. This is absolutely false. There is no cure for metastatic breast cancer, which means it left the breast and traveled to other parts of the body.
2. Metastatic breast cancer is a deadly disease, not a chronic illness. There are over 42,000 deaths in the U.S. alone each year, which is 115 lives taken per day. Another shocking statistic I recently learned is MBC takes 600,000 lives worldwide annually!!
3. I learned MBC doesn’t discriminate; it can impact anyone at any time. There is a misconception young people and men do not get breast cancer and that is false. Jessica was diagnosed at stage IV (referred to as “de novo”) at 32 years old and she had no symptoms. Sadly, it can impact anyone at any time.
4. I learned 30% of the breast cancer community diagnosed at stage 0-3 are at risk of a reoccurrence. Stage 0 can and does return as stage 4. It is not sequential.
5. I learned the average life expectancy of a person living with MBC is only 24-36 months.  Heartbreaking stat to learn. Jessica lived four years. She lived with courage and strength, continued nursing, continued coaching and never missed a family or friend event. I’ve never met anyone stronger than her.    
6. I did not know people with MBC can run out of treatment options, or that the type of breast cancer can change overtime.  Jessica was originally diagnosed as stage IV meaning the breast cancer spread to her bones. Overtime her diagnosis changed from ER+ to triple negative.
7. I didn’t realize scans for the MBC community happened every three months or sooner.  Often times people with MBC are scanned every three months to looks for signs of progression.  It creates an extreme amount of anxiety for both MBC patients and their families who love them.  To learn more about the day in the life of an MBC patient for both the patient and their loved one see this blog Jessica and I wrote together for METAvivor called Two Young Women Share Their Stories about MBC.

I did not know that 98% of all breast cancer deaths are metastatic, yet less than 5% of funding goes towards metastatic breast cancer research.  The majority of funding is going toward awareness with the exception of METAvivor who puts 100% toward stage 4 peer reviewed breast cancer research grants to truly find a cure. Jessica researched and found METAvivor was the best organization to support where 100% of donations go to MBC research.  That is why the #LightUpMBC campaign benefits METAvivor.

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