Unfortunately, cancer has always been a part of my life for as long as I can remember. Fortunately, I have never been diagnosed with it myself. I’ve had my own battles with cancer in a different way… but first my family’s history.
In the 1980s, my mom was diagnosed with breast cancer, when she was merely in her 30s. Back then, technology was not what it is today; and sadly, she lost that battle when I was 8 years old. My life and my family were forever changed. In the 1990s, my younger sister battled leukemia as a toddler. Nothing hurts like watching a child suffer from a disease like that. NOTHING. Through nothing short of a miracle, she is alive and thriving today.
Fast forward to the early 2000s, my maternal grandfather who was the world’s kindest man fought hard, but passed away from non-smoking lung cancer. My paternal grandmother who after decades of successfully and gracefully working through Parkinson’s Disease, was diagnosed with a brain tumor.
Then it was my aunt (my mom’s sister) who was diagnosed with breast cancer. The unthinkable was happening to our family again. She is my mom’s younger sister and was only a teenager when I was born, so we were very close. This time I was an adult, so I was much more aware of what was happening and what her diagnosis involved. I watched my grandmother face the fear of watching yet another daughter battle cancer again. Thankfully, through the grace of God, fantastic medical treatment, and support from her family, my aunt beat cancer and is living a completely healthy life today. What we learned through her diagnosis and genetic testing, may have been what saved my life, and what could possibly save the lives of her children, my brother, and his children, and my children.
Because of the significant family history, my aunt’s doctors conducted genetic testing to see if her cancer was hereditary; and it was. So, after she was in remission and healthy, she spoke to me and encouraged me to be tested as well. There was a 50/50 chance that I was a carrier of this same mutation that significantly increases a person’s risk for breast cancer.
I didn’t know what to think.
I had recently gotten married, wanted children, and was in my mid 20’s, I didn’t really want to think about all of that. She wasn’t forceful, not at all (that’s not her style), but she wanted me to know the risk, to be tested if I wanted, and go from there. I knew I would do it eventually, but I didn’t want to know the results just then.
So, a few years went by and my husband and I were blessed with two fantastic and healthy children. A girl and a boy, 22 months apart. As you could imagine, life was hectic and crazy, but it was amazing. As the children got older and we knew that our family was complete, I began to research and talk to my husband about doing the genetic testing. He was nothing but supportive, and encouraged me to pursue it as well. What would we do if it were positive? Who knows, we will figure that out later, but we need to know the answer first.
I think in the back of my mind I always knew what that answer would be.
In May 2014, I gave blood and in July 2014 I’ll never forget getting a phone call saying that the doctor would like to go over my results at the office. I knew what that meant. And I knew at that moment who to call. My aunt told me exactly what to do after I got confirmation indicating that I was positive for the BRCA1 mutation. This meant that I had an 80% chance of being diagnosed with breast cancer in my lifetime and my risk for ovarian cancer was also increased. What was most concerning was the age at which my mother and aunt were diagnosed. Both in their 30s. I was 33 and I didn’t have the luxury of time anymore. My aunt was reassuring and comforting and said, “Dr. Stolier already knows all about you, he will take care of you, and I’ll be there every step of the way.”
My research-driven self looked up everything I could find, and that August, I had a consultation with Dr. Alan Stolier (surgical breast oncologist), Dr. Whitten Wise (reconstructive surgeon), and Dr. Pui Cheng (gynecological oncologist). I instantly connected with this team of surgeons/miracle workers and was completely confident in their knowledge and guidance. They reviewed my testing and my familial history and my choices were basically:
Increased screenings: MRI’s of the breast, mammograms every 6 months. Plus, ultrasounds of the ovaries and blood work yearly. This does nothing to reduce my risk, but just helps for early detection. Not good enough in my mind.
Chemo like medication: some risk reduction for cancer diagnosis, horrendous side effects, and research is split on what the long-term results are when a patient takes this type of medication long term. Too scary and the results still not good not enough for me.
Radical surgeries, and a few of them. Bilateral prophylactic mastectomy, breast reconstruction, and total hysterectomy. Of course, this was the most extreme and radical of the options, but it would reduce my risk drastically.
It was of course, no surprise to me, what the options were. Like I said, I did a lot of research and I knew all along what my choice would be. I HAD to have the surgeries. Look what cancer had already done to our family and the pain and loss we had already experienced. I COULD be next, and the statistics actually indicate that I AM next.
I grew up without my mother and my children without their grandmother because of this disease. There was NO way that I would do less than everything I could to make sure that that did not happen again and that my children wouldn’t have to grow up without their mother and my husband without his wife.
I wouldn’t let that happen to us. And I guess I never looked back…
The next three months were a complete whirlwind. SO many appointments and tests to run (EKG’s MRI’s, chest X-rays, ultrasounds, countless blood draws, dye tests to determine artery locations, tests that I can even recall or remember) Actually the last three years have been a whirlwind! My first surgery was scheduled for November 4, 2014. Bilateral prophylactic nipple sparing mastectomy with DIEP flap reconstruction (a 9.5 hour surgery for someone who is actually a complete wuss and until that time had never even had stitches or broken a bone). I won’t go into detail about that procedure but feel free to look it up because it is miraculous and incredible. Phase 2 was in February 2015, which included routine revisions to the reconstruction, etc. AND, finally less than one week ago, on September 26th, 2017, I had my final procedure (laparoscopic hysterectomy). Of course, it’s hard to not get overwhelmed after something like this. I am definitely forever changed.
My body, of course, is not the same, and I have some serious scars to show for it. (And right now, I have some new ones ). Trust me, just last week, I had some low moments and some intense pain, so it’s not all glory and winning all of the time. I constantly remind myself that through all of this and all of the tough times and pain, I ALWAYS knew that I would heal and be healthy and carry on with my life.
Those who are fighting cancer don’t have that luxury. They have these same extensive surgeries as I did, while going through chemo and/or radiation, losing their hair, unspeakable fatigue and illness and they also have to know that at any time, their cancer could return and they could be in for another fight. I had it easy and THEY are the true heroes.
Those of you that know me, know that I’m not one to speak about myself that much. In fact, when Tina asked me to write for her page, I really had to think about if I wanted to. (I’m so glad that I chose to step outside of my comfort zone and do it though).
I have friends and acquaintances that I see and interact with daily in my life and they don’t know any of this. It’s not something that I post about on social media and certainly don’t just insert these topics into my everyday casual conversations. Not that I am ashamed or that I want to hide, it’s just a very intense and emotional topic. One thing I do say and always remind people when I see them experiencing a rough time, is that you never know how strong you are, until you have no choice. In the hardest of times, we can truly see what we are made of and how tough we actually are.
Cancer has taken so much from me, BUT I had and still have everything to fight for and I never take that for granted.
My husband has been the most unbelievably supportive spouse one could ask for. He’s honestly seen me at my worst and my weakest times, and he’s done nothing but pick me up every. single. time. To say I owe him everything would be an understatement. My entire family and group of friends have been so kind and encouraging through this journey. Their love and support will never be forgotten, whether it was a text to check in, a home-cooked meal, flowers and treats, giving my kids a ride to a school/practice, or their prayers, I sincerely appreciate every single thing everyone has done for us. My children are the happiest, smartest, and most well-adjusted kids you will ever meet (I’m their mom so I can say that!). Everything that I am and that I do is for them.
I am thankful that this happened when they are too young to realize the severity of cancer. We have always been open with them about what my surgeries were for and that I chose to do this so that I would be stronger and healthier for them for the rest of all of our lives. I know that as they age, they will want to know more and they will be better for this experience. One day they will have to have the genetic testing too, and that’s okay because I will be there right beside them the entire way- just as healthy as I am today.