Survivor Stories: Nickie Luse

I was 38 and living in Dayton, when the plan for my life that I had mapped out so meticulously took a radical turn for the unexpected. I was heading into my fourth season as a professional triathlete with my health and fitness dialed, but somehow breast cancer found a way to get a foothold in my body. It was all the more painful and unbelievable because I had lost my mom and grandmother to pancreatic cancer just three years earlier. I didn’t want my family to have to open up those wounds…but cancer doesn’t give us any choice.

After graduating from the University of Cincinnati, I started my career as a traveling nurse, exploring the western states after what was then a lifetime in Ohio. While I loved being a registered nurse and enjoyed the meaningful work, I was not able to spend enough time living my true passion for sport. I returned to Ohio and for the last 12 years, I have been working at Up and Running, a locally owned specialty running store, while also training to the level required of a professional triathlete. I am not only passionate about my individual performance goals, but I have seen what a profound impact sports can have on the lives of young people, so I enthusiastically volunteer my time coaching the cross country team at my high school alma mater and mentoring athletes through Mind Right Endurance.

Sports have always been a huge part of my life. I grew up a soccer player, spending more time juggling and kicking a ball than I did most other things in life. I played soccer through college and then swapped my cleats for running shoes and decided to train for my first marathon to stay in shape. After graduation, I took my graduation gift money and put it towards a road bike. When I arrived at my first nursing job in Colorado, I had a friend teach me how to swim, and that’s how triathlon slowly made its way into my soul by the time I was in my late 20s. A childhood friend, Paul, tempted me with the prospect of doing an Ironman together when we turned 30...or getting married…I chose the race, and the rest is pretty much history. For my first three seasons as a professional triathlete, I raced domestically from coast to coast and have had the opportunity to race in Puerto Rico and Canada. I have always loved to travel, and triathlon has given me the opportunity to purposefully enjoy it. Meeting strangers that take you in like their own, exploring new cultures and diving into unknown waters has been awesome. I have been seasoned by my “job” to exert myself daily, finding new limits through the ups and downs of asking the body to go beyond what our minds think is possible.

It was in this mindset, as I prepared to fly to Hawaii to train and volunteer for Kona Kids, a sports and wellness program for low income youth, that I headed into my annual exam. My doctor was in the middle of doing a breast exam and making small talk about how I was still two years off from having my first mammogram and implying that was a distant concern when she suddenly flipped the script and said, “Oh wait a second, I take that back…” She found a lump and didn’t seem immediately concerned. But she knows me and my lifestyle well and preferred that I get it checked right away so it didn’t slip through the cracks before I left for Hawaii and turned my attention to my full-to-bursting schedule. Having a doctor that I had a long partnership with was certainly a benefit in my case, maybe even a life-saving one, because I would still be living with an unknown cancer growing inside me if it wasn’t for her. It also could have been her knowledge of my family history that included just about every kind of cancer…except breast…that contributed to her push toward getting it checked out rather than taking a wait and see approach.

Generally speaking I’m a positive person, but I had a pit in my stomach that I just couldn’t shake. I felt like the world was spinning around me, and I was stuck in slow motion. Waiting to learn my fate was the worst part because of where the mind goes when you are dealing with the unknown, and I didn’t want to tell too many people because you don’t want to have a lot of “what if” conversations. Fortunately, I only had to wait two days for the mammogram and ultrasound, and instead of then having to wait days for results from the scans to come back, I could sense by the number of additional retakes and the demeanor of the ultrasound tech that this “probably nothing” was most likely “something.” The news was delivered on the spot by the ultrasound tech that I would need a biopsy for some “suspicious” images that they just couldn’t rule out as “normal.” The phone calls were put into motion, and before I knew it, I had a biopsy scheduled for the next day, thanks to my amazing family doctor who is the best advocate I could have asked for.

I will never forget the exact moment my phone rang with the news. It was a Tuesday afternoon, and my biopsy had taken place the previous Friday. I saw the number of my family doctor come up, and I almost didn’t want to answer, but of course I did. I could hear it in her voice. It’s news no one wants to deliver. I knew it was the C word before she even said it. The first thing I recall hearing, “well you have the best-case scenario of a worse case situation.” Anxiety, fear, sadness, and believe it or not a sense of relief all in what seemed like only a moment’s time flooded through me. I have cancer? No way, I’m extremely healthy and a professional athlete, and I’m supposed to be leaving for Hawaii in two days to train and volunteer with Kona Kids. It was a crushing lesson that there are no guarantees and “supposed tos” in life.

Because this was not my first run in with cancer in my family, there were other memories and traumatic experiences wrapped up in my diagnosis. My mom and grandmother had passed away from this insidious disease in the three years before I was diagnosed…it surely couldn’t now be my time? I didn’t want to call my family. I didn’t want them to have to get on the cancer roller coaster again! The word cancer kept ringing in my ears and then the adrenaline suddenly kicked in, just like the start of a race. I allowed the tears to flow, and then I switched into the what-is-next mentality. You “know” what you are up against. You have to train, and you have to be positive, and you have to believe you will win, and you have to give your maximum effort to be the very best version of you at the starting line with your competitors. Yep, it became a race with cancer from the moment I hung the phone up. Competition is what I know and how my brain chose to deal with this endurance test.

The day after I was given the news, I woke up to a decent size snow fall, and I laughed knowing I should have been in Hawaii. This is the day “deep breath hours” came to fruition, which is my best mental tool to date. I had so much “noise” in my head for the week that transpired between initial gynecology appointment to cancer diagnosis that this was the first day I let myself escape. I took my mountain bike out to the bike trails with my coach and rode for a couple of hours, mostly in silence, until I couldn’t feel my feet. I cleared the space in my head and decided I needed a hot chocolate to warm up. For me, “deep breath hours” meant that every day for one hour, I would unplug and have Nickie time. Some days this consisted of quiet time on the couch napping. Other days, it consisted of walks, long bike rides with no technology, reading, or nephew time. Truly the only “rule” I gave myself is that technology was gone, except for music. It felt good to “escape” life momentarily and find peace in the contemplative time. “Deep breath hours” were a game changer for me and still continue to be!

Physically I continued working as if I were going to race in April, like the original plan for my triathlon season. I had very few restrictions outside of recovering from my biopsies until surgery time. I listened to my body and let it dictate how much I could bite off. I remember vividly on one of my indoor training rides, I just crumbled and had no energy. My coach happened to call, and I was trying to push through. It was ugly. He said, “give yourself a break, you have cancer.” The words struck a deep nerve and took me down. I got off my bike, showered and took a long nap. The mental stress was real because physically I felt fine and didn’t want to give up on working out. After that slap in the face, I was much better about listening to my body. I love to work out so keeping a training plan was therapy for me. Even surgery morning, I was able to put in a few walking miles to get in a good dose of fresh air. The day after surgery it might have only been a walk to the car and the day after that to the mailbox, but I walked every single day outside during my recovery since March 12th. That has been the best therapy. I have walked with company more than I have walked solo, which is also something I would encourage anyone facing this disease to do. When someone asks what they can do to help you, ask them to take a walk with you.

I’m finding that my emotions continue to be unpredictable, just like training. I’d be lying if every day was a walk in the park. I tend to remain very positive and upbeat and focus on the fact that I am cancer free and couldn’t ask for a better outcome. Even given my favorable prognosis, I still have days of fear and sadness and then other days where I feel like I am on top of the world. Every evening I jot down thoughts from the day, new milestones post-surgery, and I reach out to friends daily. As this is uncharted territory, I have been trying to embrace what every day brings and understand that sometimes, I just might not be able to wrap my head around every nuance of how cancer has impacted my life.

Looking back, I think my experience navigating the decision-making around my treatment plan was very much aided by my nursing background, and some basic advice I would want any newly diagnosed woman to hear is listen to your gut, do what is right for you, not what others tell you is right, and explore your options and always get a second opinion. Surround yourself with a great primary health care team and from there have them help you navigate the next step with specialists. Ask around, navigate through friends and referrals. Don’t be afraid to ask questions. If you have to go outside of your community to find the best care team, that is what you have to do. I found comfort in an all-female care team. I’m not saying this is necessary for everyone, but it was right for me and trusting your gut on what is right for YOU is essential. I believe patients must have an advocate that attends every single appointment with you and takes notes and reminds you of your list of questions. The amount of information is overwhelming, and you can’t remember everything. The long days of hospital procedures, physician appointments, and phone calls is exhausting, and you need a trusted person to help you take it all in and sift through the information afterwards.

One thing that surprised me about having breast cancer is how many treatment decisions are ultimately up to the patient. Doctors don’t necessarily tell you what you should do. They present options, none of them great ones, and you have to select the one that is right for you. My path to choosing a double mastectomy with no reconstruction was absolutely the right one for me, though I know it is not the path that the majority of women in my shoes may choose. First off, being small chested, the surgeon was very frank and said given how much tissue they would have to remove for a lumpectomy, the results would not be cosmetically appealing. She was willing to try the lumpectomy but knowing the size of the cancer in two spots with calcifications throughout the area (which can be an indication of future cancer) she would have to remove quite a bit of tissue and suggested I might also need re-excision surgeries to take even more tissue in order to achieve clear margins. I really didn’t want to have to consider multiple surgeries for clear margins, and I knew that the lumpectomy would basically look like a mastectomy given the amount of breast tissue that would need to be removed. I chose the double even though the left side was cancer free, because I wanted symmetry (having to wear a daily prosthesis didn’t sound like a fit with my on-the-go lifestyle).

In addition, by having a double mastectomy, I wouldn’t have to take daily hormone therapy drugs for years to come. This was extremely appealing to me as well. I will be followed by the surgeon and my gynecologist for manual exams, but I won’t need routine mammograms or MRIs since I have no breast tissue and my risk for breast cancer is now extremely low going forward. I looked at pictures and prepared myself as best I could. I read blogs. I knew with certainty that breast reconstruction was not for me. I’m a low maintenance, don’t even blow dry my hair and rarely put on make-up kind of girl…so pretty simple and natural. I couldn’t wrap my head around implants made of artificial material put into an area where my body made cancer and the additional follow up procedures and appointments this would require. I wanted my life back, and I wanted to get back to exercising as quickly as possible. I just wasn’t interested in putting something fake into me for only cosmetic purposes that might even limit my range of motion and cause more side effects and impact my performance in sports. In all honesty, the thought of it kind of freaked me out.

I read a blog about a woman that had a reverse surgery for her reconstruction and had to have her implants removed as she never felt like she was herself and it was causing health problems. This kept resonating with me, and I realized I just wanted to be me. This obviously is a very personal decision, but this was the right decision for me. My scars remind me of an experience that forever changed my life. I’m good with the daily reminder, and I choose to focus on the fact that I am cancer free and that feels awesome! These scars are now a part of what makes me who I am. The day after the double mastectomy, the surgeon wanted to look at my incisions before I was discharged, and she asked if it was ok to take a peek. She said I could look away if I wanted. I chose to look with her. My first words were, “nice job!” We both smiled. I have some sweet scars thanks to her meticulous work.

Through everything I’ve been through, there was one person who was there for me in spirit whom I must acknowledge. Three years before I was diagnosed, my mom died of pancreatic cancer. I looked up to her courage and grace, and she blew me away with her optimism and her grit. I admired the way she smiled every day and the strength she showed by embracing whatever each day threw at her. I try my best to emulate my mom daily and little did I know that being involved with her daily care would teach me how to navigate my own cancer diagnosis. In the end, it was her final gift to me. I watched her accept help, love her family, embrace friendships, laugh, and treat all of her caregivers with the upmost respect and kindness. She taught me that no matter the situation, it could always be worse. I have thought of that statement many days during my most recent journey. She led by beautiful example though she could not have known what was coming for me, and for that, I am so incredibly thankful.

I’m learning the journey doesn’t end when the cancer is removed. Some days it feels like the healing is just beginning. I am learning to embrace the day to day physical and emotional ups and downs. I feel very lucky to have had the "good" kind of breast cancer and to “just” have surgery. Many days I wonder why I was so “lucky,” and I know this sounds weird, but I almost feel guilty that it was such a quick process from "you have cancer" to "you are cancer free and cured." It was two days shy of two months to be exact from the first preventative health care appointment with my gynecologist to surgical follow up with the surgeon. I am truly one of the lucky ones, even as I sit here writing and still undergoing physical therapy 5 months post op in a body that no longer has breasts.