Kara Colantuono – MBC October Spotlight

Name… Kara Colantuono

City… Wheaton, IL

I live with… Myself (and hopefully a dog soon!)

I was originally diagnosed with… Infiltrating lobular carcinoma (in other words, Stage 3 breast cancer with positive lymph nodes)

In… 2013

At the age of… 35

I was later diagnosed with… Metastatic breast cancer to the liver, ribs, lymph nodes, and ovaries

In… 2016

At the age of… 38 (how scary! And young!)

Since my METS diagnosis, my life has been… A complete roller-coaster. I am currently taking an oral chemo pill 21 days out of the month that costs $10,000 for 21 pills (no that’s not a typo), I get a monthly infusion of Zometa to treat the cancer found on my bones, and take a daily hormone pill because my cancer feeds on my estrogen. Since having my ovaries removed in February 2016, I am also monitored for bone health as I am now in surgical menopause at the age of 38. I have blood draws, a port flush, and a visit with my oncologist every month. That monthly appointment is hard. REALLY hard. I walk through those days like a ghost so that my reality doesn’t get the best of me. Before cancer, I rarely ever went to the doctor. I was, for the most part, healthy. I never had stitches, never a broken bone. Now, when I go to the doctor, I’m not just a patient, I’m a patient with CANCER. I am a 38-year-old patient with cancer. A cancer there is no cure for. The nurses always ask how I’m feeling. That’s a question that is so difficult to answer. Do you mean right now? Do you mean am I feeling sick? Do you mean am I sad? Am I scared? Am I angry? The answer depends on the day, or the minute, and I never know how to answer them; nor have they walked in my shoes.

Since diagnosed METS… in January 2016, I have grown a deeper love for life and am continually learning to embrace all of life’s challenges, good and bad, with no regrets. This year, I’ve listened to live authentic country and blues music in Memphis and Nashville, I’ve been behind the scenes with elephants at the zoo during an exclusive visit- we watched them get a bath, pet them, and fed them treats, I explored the Mammoth Caves in Kentucky, walked along the rim of the Grand Canyon, I flew in a helicopter above the red rocks in Arizona, watched the Cubs play at spring training camp and walked onto the field, went to my first Blackhawks game, rode crazy rides at Coney Island, NY, visited Ground Zero, attended a fundraiser with many of the starters on the Chicago Cubs, I went ice fishing, and attended a traditional Pow-Wow. I am beyond grateful for each of these experiences. I made incredible memories that will live with me forever. But these trips were planned because I was told to “live my life” and “fill my bucket list” on January 12, 2016, the day I was told I had metastatic cancer. My family was there with me that day, just as they have been every step of the way. Right before our eyes, my future quickly changed, and was shortened, during that dreadful doctor visit. I was also advised to stop working and to apply for social security disability. What?! That was way too much for my head to conceive. Is this really happening? To me? I am only 38 years old! After I healed from the horrible chemo, radiation, and mastectomy surgery, things had been going smooth since I was first diagnosed in 2013 and I thought I had beat it; I thought I was a survivor. But that’s not how cancer works. It rears its ugly head when no one is expecting it.

Since the beginning of 2016, I’ve also been blessed to watch my nephew as he made his first communion, I watched as my 10-year-old niece performed her cheer-leading routine just as I did when I was her age, I walked the family dog while chatting with my 12-year-old niece about life as she enters her adolescent years, I met with my friends for dinner and drinks while making new memories, I attended my 20-year high school reunion reconnecting with amazing people, took long road trips with my sister and her family, I’ve stayed up playing cards with my family until 1:00am, and so, so much more. These are the days and moments I cherish the most.

Over the past 9 months, I have also had countless blood draws, multiple abdominal MRI’s as well as numerous full-body PET scans, a brain MRI, two angiograms to treat my liver with radiation, surgery to remove my ovaries, a 4-night stay in the hospital with influenza A, and my career that I love and worked so hard at, as well as my sole source of income, came to a screeching halt because my immune system was now compromised from the chemo. This; this is the harsh reality of metastatic cancer. I am now infertile, menopausal, I cannot work, and I have to have faith that these current drugs will help keep me alive for a long time to come.

The support I have from my family, friends, fellow fighters, and even strangers, is what keeps me going. As well as all that I’ve learned since being diagnosed METS = I am stronger than anything that can happen to me and I am determined to fight this with all that I am. But there NEEDS to be more research. My life literally depends on it. There is a lot of focus, funding, and awareness on early detection but what about those of us who already have this dreaded diagnosis? We need awareness and funding too.

The hardest part of being metastatic is…The unknown. All I ever wanted and dreamt for myself was to be a mother. I always yearned for the feeling of carrying a child; to feel my unborn baby kick inside of me. To nurture and raise a child and experience all that entails. I always wondered if my child would look like me, act like me, laugh like me. I envisioned my kids playing with my nieces and nephew; taking family pictures together; playing sports together; and just going to the park together. I love children so much I chose a career revolving around children, their families, and their development.

Being in surgical menopause, what does that mean for my future? How will my young body hold up when medication has made my body older than it really is? How long will this chemo pill work for me? How long do I have to live while still feeling “good”, with minimal side effects, while on this chemo? What happens after this chemo pill doesn’t work for me? These are the things I don’t like to think about. So I will not let those thoughts stay. Instead, I focus on now. And for now, I am kicking its butt!

What is also hard for me is that people may not realize or understand that there is NO CURE for metastatic disease. Metastatic cancer means I will always be in active treatment. I will live the rest of my days treatment to treatment, drug to drug, and scan to scan. And all I wish is that I was “normal” again. I may seem to be positive and strong on the outside, but I am also human. I have hard days, really hard days, minutes, and hours. But I don’t let them consume me because I will never give in. I will continue to believe in the power of my mind. And my mind says I have a lot of life to live.

My biggest fear is… My family facing pain and grief. I want to live my life so full that they won’t ever feel sad that my life was cut short. I want them to know that I lived a beautiful, full life, and I owe it all to them. I want to be here to watch my nieces and nephews grow to be successful, happy adults. I want to be here to celebrate and enjoy my parent’s retirement as they’ve worked so hard all my life, for us. I want to be here with my brother and sister when we are older and grayer and laugh so hard we cry, just like we did growing up.

My hope is that… In some small way, I made a difference in this world. And I also hope people understand the importance of research on metastatic disease. We are merely sitting in limbo waiting for the next “trial” and next treatment that may work to help extend our life.

I encourage others to… Take one step at a time. And laugh. Laugh a lot. Breathe in the world deep and hard, all of it, good and bad. We never truly know what tomorrow will bring. EMBRACE LIFE.

If I could, I would… Make everyone live in the moment. Even when times are tough, I want people to know there is a reason, it may not come soon, but eventually, it will all make sense, as long as you open your mind and heart wide enough. If I could, I would make everyone feel loved, appreciated, important, and happy. Because in the end, we all just want to be happy. I wish I could make cancer disappear. Make cancer not be something that is even a discussion.

What matters most to me is… Happiness. Not just for myself, but for everyone, everywhere.

The biggest lesson (personally), in all of this, has been… That life is precious, and short, and beautiful. I have grown so much over the past three years, and for that, I am grateful.

I want my legacy to be… That I helped others in their time of need. I want to leave this world a better place.