The Phone Call That Changed My Life Forever…

On January 29th, 2020 my youngest sister, Lindzey, called me with news that would change my life forever. She said “Lis, I’m in the ER, and the doctor just told me I have stage 4 breast cancer. I don’t know what to do. I haven’t even called mom yet.” She was just 29 years old. She had been in and out of the ER for over two years.  She had ongoing rib pain, but the CT scans were always clear.  She was dizzy and passing out, but her blood work was always perfect.  She had psoriasis like scales on her scalp and ears, but none of the prescription ointments were healing it.  She even wore a heart monitor for a week, but there was nothing wrong with her heart.  She had test after test, but they could never find anything wrong.  But she never had a mammogram, because she was deemed “too young”, even with our family history.

Our grandmother had breast cancer at age 61. Three of our maternal great aunts, and one of our cousins had breast cancer. Our mother had breast cancer in 2009, at age 55. Mom had a double mastectomy, despite the doctor’s recommendation for only a lumpectomy and radiation. And our mom’s younger sister was diagnosed with stage 1 breast cancer in December 2019, just a few weeks before Lindzey, at age 60.  Aunt Sue insisted on having a double mastectomy, which was also against “protocol”.

After her diagnosis, Lindzey, our middle sister Loren, and myself all received genetic testing to identify our risk for hereditary cancers. We all share the Chek2 gene mutation. Lindzey also has BRCA2 and APC mutations. And I additionally have the rare MUTHY mutation. Basically, we are high risk for both breast and colon cancer. Our father was diagnosed with stage 3 colon cancer in 2013.  In addition to surgery and traditional medicine, we researched and used a holistic approach, changing his diet, and using all natural supplements.  This worked and his scans were soon clear.  The cancer was gone.  But with each clean scan more bad habits crept back in, and by 2015, the cancer spread to his brain.  In addition to stereotactic brain radiation, he returned to the holistic approach, but it was too late.  The tumors were multiplying and were deemed inoperable.  His last hope was whole brain radiation, which left him blind, and eventually in a wheelchair.  A few short months later he passed away, in July of 2017, at only 61 years old.  This was also when my obsession with organic nutrition, health, and wellness began.

I was my Dad’s patient advocate.  I attended most doctor’s appointments in person with him, or on Facetime from my office conference room.  My mom was trying to keep her daycare business open, while also trying to cope with the stress of a sick spouse.  When Lindzey was diagnosed, she looked to me to do the same.  When I got to the ER on that fateful day, I immediately called my dear friend, who also happens to be the Chief Medical Officer at Emory, and asked him to help us.  Within a few days, Lindzey had an appointment with her current oncologist, and we couldn’t love her more.  I cannot imagine anyone else taking care of my Lindzey.  She is a God send. Lindzey also immediately changed her diet, and we started researching all things that fight cancer naturally…again.

Shortly after learning of my gene mutations, I met with a genetic counselor at Emory. The counselor determined that the Chek2 mutation came from mom’s side of the family, and the BRCA2 from dad’s side. The counselor also referred me to a “high risk” team at Emory, which is basically the oncology team. I met with them a few months after Lindzey’s diagnosis. We went through my options…surgery or an advanced screening plan, which would have me screened in some capacity every three months. A mammogram, then three months later a clinical exam, then three months later a breast MRI, then three months later another clinical exam. So only one mammogram and MRI a year, but separating them to be screened more often. I opted for this route. Surgery was the farthest thing from my mind. I was still trying to wrap my brain around Lindzey’s diagnosis. And all my energy and prayers were going to her.

Lindzey gets chemo and immunotherapy treatments at Emory every three weeks, she’s eating mostly raw vegan, taking cancer killing all natural supplements, praying, practicing positive thinking, and THRIVING. Her oncologist is amazed and tells us to keep doing EXACTLY what we are doing.  Lindzey is my daily inspiration.  She hasn’t missed a beat since her cancer diagnosis.  Does she have bad days?  Of course she does.  Is she exhausted and in pain?  Yes, sometimes she is.  But she made a decision to LIVE.  She gets up, and gets dressed, every day with a purpose.  A purpose to tell her story, and to keep fighting.  I’m not the only one she inspires daily, she has hundreds of thousands of people following her, and has given so many people, in all different life situations, the will to live.  Because of her, I’m trying to live each day to it’s fullest.  I’m also still obsessed with nutrition and wellness, and have helped teach dozens of people how to use food, and all natural supplements, to fuel and heal their bodies.

Fast forward to the Spring of 2021.  Lindzey is still doing amazing, and I was finally able to take a breathe, and pray for God’s plan for ME.  I am 45 years old, the breadwinner for my family, and trying to be the best wife, and mother to our three sons, Vince 15, Duke 10, and Rock 6. God starts to give me subtle nudges to research prophylactic mastectomies. I joined a few private prophylactic mastectomy Facebook groups. I learned that there’s a name for me. I am a Previvor.

My 17th wedding Anniversary was on May 1st, 2021. My husband, Jason, took me to dinner, and then we went to hear my middle sister, Loren, sing. While sitting at the bar I told him that I decided to get a double mastectomy. I had never mentioned it to him before. After a few initial minutes of shock, I only had to say a few sentences, and then he said “You have to do this”. In 2003, the year we were engaged, he made a similar choice. He had a very aggressive strain of testicular cancer and we opted for a radical surgery to remove 26 lymph nodes from his abdomen, before the cancer had a chance to spread. That same friend, who is the Chief Medical Officer at Emory, saved Jason’s life.  He was only a few years out of his Urology residency at the time.  That surgery also enabled us to have our three greatest blessings, our sons. Jason understood and was 100% supportive of my decision.

So, on October 12th, 2021, I received a prophylactic bilateral mastectomy, with immediate direct to implant reconstruction. As I write this, I am 10 days post op and feeling great. I got my pathology back and my right breast had pre-cancerous cells. These were NOT on my mammogram and MRI just two months prior. I know that I made the right decision. And I now know why God put this so suddenly on my heart.  Sometimes I feel guilty for having the chance to do this though.  I feel like the role should be reversed.  I’m the big sister, I should be the one carrying the burden of cancer, not Lindzey.  She should be the one that got this surgery.  But I know that God has a plan for everything, and I think this is to show the world that miracles do exist.  That no matter what gets thrown at you, if you trust in Him, everything will be not only be ok, but will be better than before.  We are already seeing this miracle come to fruition.  Lindzey is happier, and better, than before the cancer.  She even followed her dreams and started her own streetwear clothing line, with our other sister Loren.  She did this with stage 4 cancer, while also having a full time job.

I got a double mastectomy to be here for my Jason.  I got it to be here for our three sons.  I got it to be here for my mom.  I got it to be here for my Lindzey.  And I got it to not only to be here for my sister Loren, but to be a role model for her, to maybe one day consider this surgery for herself. I’ve also been very open on social media about my journey, and have since learned of numerous friends, and even some strangers, who are high risk and considering this surgery. I didn’t know it before, but I also did this for all of them. If I can help save just one person’s life with my story, then it was worth sharing.

by Lisa Hakim