Jennifer
"We are not a lost cause. Our lives matter."
2020 Update
I was diagnosed Metastatic in 2012. I have had many ups and downs living with MBC. I have gone through 6 major surgeries in 8 years. I have done two aggressive chemo cocktails, in a total of 18 months. I have been lucky enough to have HER2+ receptors, which means I have more treatments available than some other cancer receptors do. I am lucky because my body is responding to these medicines. I am NED, which means No Evidence of Disease. It does not mean I am cancer free. NED means I am thriving at this moment. My doctors are very honest with me, and I understand that this status can, and most likely will change in the future. I understand my life is in jeopardy, which is why I call myself a Thriver, not a survivor.
I use my days left advocating for MBC Research to be funded. Every MBC patient deserves to be so lucky. We need to raise our voices for others. A few memorable things I have done in advocacy over the past two years is attending METAvivor’s Stage 4 Stampede. I was honored to help lead METUP’s Die-In protest on the Capital Hill Lawn preceding the Stampede in 2019. We are making sure the National Cancer Institute is hearing our message. We need MBC research funded NOW. We do not need pink ribbon marketing campaigns that give very little to funding clinical trials. We are dying for a cure, and we need more.
METUP also helped me when Moffit Cancer Institute denied me access to their palliative care program for two years. I had to fight for proper care . I now help others who find themselves in that position. I have also helped plan two major galas, called Metsquerades, benefiting METAVIVOR. I am on the board of Orlando Metsquerade. I also helped as volunteer coordinator for the 2020 AnaOno show at New York Fashion Week! It was a huge success and a big honor for me.
Covid has thrown its hat into the MBC Ring in a major way. All major advocacy events were cancelled, including the Orlando Metsquerade. That was a real blow for those of us who worked so hard. Many people had it worse, I realize that. But when you have stage 4 cancer, you only have so much energy to give, and realizing all our work went down the drain was tough. This is our passion.
On a national level, I know many patients who were unable to get treatments and surgeries. I was personally effected by not being able to have my scheduled breast reconstruction surgery. It is considered elective, and elective surgeries had to wait. I have decided long ago to focus on making fun memories with my 16 year old daughter for as long as possible. Surgery will now have to wait until the summer. Until then, you will find me at varsity cheerleading high school games, and at All-Star cheer competitions across the nation, watching my daughter cheer for the Rock Solid Allstars! I don’t take one day for granted, and neither should you. #StageIVneedsmore
2018 Story
I was diagnosed with Ductal Carcinoma Stage 3 Breast Cancer at the age of 33. I did not listen to the breast surgeon who told me I needed a mastectomy, chemo, and radiation because I was scared of chemo. I checked into a Wellness Center and started using the Raw Food Protocol including enemas, juicing, growing my own wheatgrass, meditation, and yoga. I stopped using microwaves, hairdryers, underwire bras. I changed my deodorant, soaps, toothpaste, and cleaning products. I refused any scans and used Mobile Thermography instead. I progressed to Stage 4 within 8 months. It was probably sooner, but I do not really know because Mobile Thermography was lying to me and telling me I was healing. They fudged reports to keep my business. The breast cancer metastasis spread to my lung and 21 lymph nodes in my underarm. I decided to start chemo and had a lumpectomy. I was terrified. I had an allergic reaction to my first dose of Taxol and truly thought I was dying for about 30 seconds until the doctor gave me a shot of Benadryl. Looking back, I felt that way because of really bad information I read online months before.
After 5 months of aggressive chemo, I was told I was lucky enough to be NED (No evidence of Disease). I remained on the Raw Food Lifestyle for 18 months. Eventually, I realized the chemotherapy was extending my life and no amount of vegetables or supplements will outweigh the life-extending poisons that were helping me, so I drove to Wendy’s and had a burger. Followed by a Hershey’s bar. That was the best burger of my life! I no longer eat a plant based diet. I probably eat too much chocolate, but I will not apologize for it.
I remained NED for two years, and then I had nipple discharge to the same breast I had the lumpectomy on. My cancer was back, but my Oncologist would not believe me. He was convinced I was fine because the Catskan did not detect cancer. My tumor markers were normal. I knew it was back because I felt awful and my intuition was screaming to get a second opinion. I went back to Moffitt Cancer Center, where I ran from years before, to be told I was correct and I had a second Cancer. I had Paget’s disease of the nipple which does not show on scans. The biopsy showed I also had DCIS, Ductal Carcinoma In Situ. That meant more aggressive treatment and a mastectomy this time. I did 4 months of aggressive treatments. I have been NED again since 2015.
I know how LUCKY I am. I did everything “wrong” by refusing medicine when I was diagnosed. I could have died because I listened to bad information that circulates about cancer. I truly believed I could save myself if I tried hard enough. I know now how fragile I was and I know there were a lot of people manipulating me into believing that I could. I have forgiven myself. I still have a lot of survivors guilt because all my friends with cancer who were in the Wellness Center class with me have died. I now use my time left to advocate for Cancer Patients using conventional medicine and speaking out against those who manipulate and profit off the sick with false promises of cures.
I will always need treatment. My life will always revolve around scheduling cancer infusions and appointments and scans . I am ok with that because I get to be a mom of my teen daughters. I get to be a daughter and a friend. I get to advocate for #Metup and help teach why Palliative Care is so important to MBC people getting proper care. I get to raise money for MBC Research . On October 20 I get to lobby with #METAvivor in Washington DC and join fellow MBC friends at a DIE IN reminding our leaders that 114 men and women are still dying of Metastatic Breast Cancer every day in the United States and we need research funded . We are not a lost cause. Our lives matter.
I get to live on my terms until my time runs out. And Im grateful for every single day.
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