I am totally humbled that Lesly has chosen to share her story with us today. Lesly was the first one I reached out to when I knew I was going to be needing chemo. I remember her and a friend of ours going to my first wig appointment at HPI. I said to Kimberly, the owner of HPI, that I was more traumatized by the thought of losing my hair than I was losing my breasts”. Lesly looked at me and laughed and said she legit said the same thing!
Lesly is one of my heros. I’m so lucky to have had her in my life during that unknown journey, and I’m so glad she is in my life now to help each other learn how to navigate this new life of ours.
Enough of my babbling! Here is Lesly!
Laura is one amazing lady! We met through mutual friends just after her diagnosis. I was about 6 months ahead of her in my BC journey, and I met her at her first wig appointment. Her spirit and joy were infectious. Like many women I have met in “the club you never want to join,” she was strong and full of positivity. I continue to be inspired by her courage in sharing her story.
Early on, I was told by another friend in the club, “you can’t feel angry that your diagnosis is worse than some nor can you feel guilty that yours is better than others.” She was spot on. At the time I was already feeling both of those things. As I look back over the last 2 years, I realize that for whatever reason, this is part of my path. I choose to be better because of it and I am so grateful for the lightness I feel on the other side.
I am 46 years old, live in Birmingham, AL with my family – my husband, Robert, and his 2 great kids Max (17) and Miller (14). I am also career woman, traveling to Nashville (and all over the country) with my work. On June 26, 2017, I was diagnosed with breast cancer. I had always been a big planner, super organized and highly focused. Needless to say, this diagnosis was not something I was expecting and it hit me like a ton of bricks.
A little backstory first. I had been married previously in my late 30s and spent 5 years desperately trying to have children with my first husband. Seven miscarriages, multiple drugs, shots, surgery, IVF, etc consumed me in that period of time. I read as much as I could about infertility and everything surrounding it. Somewhere along the way, I read about increased cases of breast cancer in women on a similar infertility path, and it stuck with me. I don’t remember exactly what it was or what drug it was linked to, and truthfully, that part doesn’t matter. What is significant, is at that point, I started doing self breast exams every month. In the Spring of 2016, I found 2 lumps in my left breast. My breast tissue was too dense to show anything on a mammogram, so an ultrasound was ordered….it revealed 2 cysts. I had them aspirated and tested, and all came back fine. No big deal! In April of 2017, I found another lump in same breast. I was not overly concerned…it seemed just like the first cysts to me, and it was on the same side. I already had a mammogram scheduled for June 19th, and Robert, and I were getting ready for a 2 week trip to Israel, so I decided to wait and have it checked when I was scheduled in June. The NP doing my exam that day, had a difficult time finding it, at first. When she did, she explained that it didn’t feel like a cyst, and because of my dense breast tissue, she wanted me to have an ultrasound, as well. After my infertility struggles and miscarriages, I had come to recognize when an ultrasound wasn’t looking good. And THIS was one of THOSE ultrasounds. They could not give me a definitive answer that day, but I saw the concern and asked the radiologist to send my results to my friend who was a surgeon. I was traveling for work that week and just pulling into Nashville when his office called to schedule a biopsy…immediately. Friday morning, we had it done and Monday, Robert and I went together to hear the results from Dr. Fischer. I had known Philip since High School and he is married to one of my best friends. I can’t imagine what it was like for him to give Robert and me the news, but he did with the utmost compassion and care. Hearing those words, “it’s cancer,” is not anything I can describe. It was terrifying and numbing (and a whole lot of other emotions) all at once. But the shock could only last a minute, because reality was about to set in. I had to figure out exactly what I was dealing with and how to get rid of it. My cancer was diagnosed as Stage II, grade 2 invasive ductal carcinoma, hormone positive and HER2 negative.
Robert was my rock. I am a pretty private person. I only wanted to talk to the few people who could really help me determine the best course of action, and get me moving. I called and told my parents, asking them to share the news with my siblings and my huge extended family. Robert told the kids, his mom (Marcia), his sister (Carrie), the rest of our extended family and closest friends. My friend and co-worker (also a cancer survivor), Mandy, shared the news for me with my work family and business associates. I was so overwhelmed by the diagnosis, and I needed to process it. Because of that, I was not comfortable talking about it or sharing it on social media. My key people…Robert, Carrie, my Mom and Mandy, helped manage those early conversations for me. Once I understood what I was dealing with and had my surgery scheduled, I sent an email to my friends and family sharing the plan. I will forever be impacted by the strength my friends and family gave me at that time. It humbles me still today.
In gathering information, I knew I wanted more than one opinion. I quickly realized there was no ONE WAY to treat this disease, but there were options based on my specific cancer, my age, my health, my oncotype score, etc. I went to a second hospital for another opinion. It was drastically different than the first and I left in tears – full blown ugly-crying breakdown. I was lucky enough to have connections to 2 additional oncologists in other cities – one being one of the leading breast cancer oncologists in the country. My discussions with them confirmed my gut instinct and I chose my treatment plan. I opted for a radical mastectomy and reconstruction first. Dr Fischer did the mastectomy, followed by Dr. Steinmetz doing the reconstruction the same day, then Dr. Piede at the Bruno Cancer Center took over after surgery as my oncologist. The surgery was a success. The path and test results concluded clear margins, no cancer in the lymph nodes, but a high enough oncotype score that I would need chemo. The good news – only 4 rounds of Taxotere and Cytoxan…no RED DEVIL and no radiation! Small but monumental victories to me!
IMPORTANT NOTE – there truly is no ONE RIGHT treatment plan. Every person and their exact plan is as unique as their specific cancer and their DNA. Right after my diagnosis, I found a lot of well-meaning friends wanted to share with me what they thought I should do. Those opinions came from a place of love and support, but they were not what I needed. I had already connected to a few women who were members of the club. Those women helped me understand that the only people that could determine my route were my doctors, Robert and me.
There were so many unknowns going into the surgery and treatment. I had never been under anesthesia for more than a couple of hours, and I was under for 9 hours for the mastectomy/ beginning reconstruction/ expanders. I was not prepared for how difficult the “hangover” from that amount of anesthesia would be…nor for the discomfort, the inability to do almost anything that required my arms, the pure ick of drains, etc. I was exhausted and struggled to remember things…everything it seemed. I had a note pad with me all of the time. Once treatment started, I was determined to NOT have a port. I didn’t want the reminder in between treatments (mine were 21 days apart) that I was “in treatment.” I obviously didn’t realize that looking in the mirror would be a constant reminder (being bald will do that to you). Truthfully, being in treatment was the 1 thing I DID remember…everything else was a struggle (YES – chemo brain is a real thing)! On top of that, I did not realize how hard the chemos would be on my veins. By my last treatment it took my nurses close to 2 hours to get a vein to hold up for me. If I had to do it over again, or if I was asked for advice from someone new to the club, I would say – GET THE PORT! There is a reason for it!
Losing your hair sucks! It’s that simple. I didn’t realize it until the day we shaved off my few remaining straggles, but emotionally, it feels like losing an appendage. I had a much harder time losing my hair than I did losing my breasts. Think about it – most women have never seen themselves without hair. I certainly had not. I had 2 girlfriends with me when that last little bit came off. They brought wine and wigs and made sure to keep my spirits high. We went to HPI (the amazing women in Nashville who custom made my wig), let them shave what was left and do my final wig fitting. I was looking at my friends as the clippers cleaned up my bare scalp, then I turned to face the mirror. All I could do was cry. When I saw myself bald for the first time, it was like I lost part of my identity in that moment. Add to that, the reality check that most acquaintances and strangers had no clue about my diagnosis at that point. The new bald head would change that – now everyone would know I had the “C.” Those first 2 days were tough. But then, I started to get comfortable with it. I guess I really started to get comfortable with myself. I was managing major changes to my body, while managing nausea, exhaustion, mouth soars, hot flashes, headaches, body aches, the list goes on, and also trying to keep up with every other aspect of my life. It was a lot! But then, I eventually started to appreciate how easy it was to NOT have hair. I wore my wig when I went out or to meetings and events, but when I was home, working out, going to the grocery, living everyday life, I wore a hat or a scarf. Eventually the freedom of being bald helped me learn how to not to sweat the small stuff.
I did get some great advice from my fellow club members and from my primary physician’s nurse (Pam was a former oncology nurse). Hydrate, Hydrate Hydrate! Pam told me specifically 40 oz of Gatorade or G2 starting the Sunday before my Wednesday treatments, plus 60 oz of water each day. I was religious about getting my fluids and it paid off. I also exercised everyday. I have always worked out – I am a runner and have a trainer 2 days a week. After surgery, as soon as I got the green light to walk, I started walking outside. I continued that during chemo. Dr. Piede, said it made a huge difference in my overall health and how I handled treatment. There were some days I was shuffling more than walking, others I could barely make it to the end of the driveway, but I tried to do something, even if just for fresh air. I always had a friend or my mom with me to make sure I made it back ok (some days were questionable). Those walks and visits with friends were as important to my mental and emotional health as they were to regaining my physical strength. I also set a goal during treatment to do a 10k Thanksgiving week. I realize this is a bit crazy and not the right goal for everyone, but for me, it was pure motivation. We were going to Rosemary Beach for Thanksgiving and it was supposed to be the week of my last round of treatment. Because of the holiday, Dr Piede let me push treatment to the following week, giving me an extra week of recovery between my 3rd and 4th rounds of chemo. With his blessing, I signed up for the race. On my good days between treatment (I was typically down for 5-7 days, then gradually improved over the next 14 days) I would walk/ jog 2-4 miles each day. When race day came, I had no clue if I would make it. Two friends joined me for the race, talking and running with me all 6 miles. I cannot remember how we did, but it did not matter – we finished! Robert and our family were cheering us on at the finish line. It was the best Thanksgiving I have ever had.
A couple other little tidbits:
- Chemo nurses are amazing. My friend, Laine, who was about 6 months ahead of me in treatment, told me early on to meet and get to know my chemo nurses. I did and Kim and Lorie became my angels.
- Rest is one of the most important things you can do. You really cannot get too much of it. Rest your mind, your body and your soul. They all need it.
- Anything that comes up in your body that feels off or weird or abnormal – tell your doctor. Even if it feels insignificant, tell them. You are the only person who can communicate what is happening in your body to your doctor – don’t shy away from sharing that information.
- Chemo brain is real. The change in my brain, my memory, my ability to find vocabulary…it was all so frustrating. I still take notes in every phone call, every meeting, all day long. Find what works for you to give you confidence to make your way through that obstacle. It does improve and I still have hope it will be back 100%. Acknowledging that it exists and being honest about it, rather than trying to hide it from everyone (including yourself), makes it easier to manage. It is OK! And on the bright side, I really don’t remember my worst days after chemo!
- Being the sounding board for “new members” the way so many women were for me is an amazing way to perpetuate kindness, hope and love. We need more of those qualities in this world and I have yet to meet a woman on this path who is not a shining beacon for all of it!
I am on Arimidex now and for the next 10 years. I went through 4 AI’s to find this one. The menopause symptoms are REAL, but they eventually settle. The bone pain is no joke, but it calms down too. I met the most amazing woman in my travels last month. Her name is Amy and she is Stage IV Metastatic BC. After 7 years post her first diagnosis (hormone +, HER2 -), treatment and an AI, she is in the battle again. But she is gorgeous and strong and HAPPY! She is living life FULLY! Another member of the club whose presence inspires me.
In this whole experience, I had to learn to let things go. Historically, I had been a bit of a worrier. My family and I were not expecting to get this diagnosis when we did, but then no one is. If you are reading this, you know first hand that cancer does not discriminate. It is painfully cruel and systemically hard for everyone affected by it. You have to educate yourself on YOUR version of the disease as quickly and thoroughly as possible, and preferably, without getting on the internet. Both hospitals gave me information from the American Cancer Society on MY specific cancer and on breast cancer in general. I read all of it. I compiled questions from that research for my oncologist and my oncology contacts. I insisted on being informed so I could clearly weigh my options. I also respectfully thanked advice-giving friends who had not personally experienced a similar cancer and stayed away from engaging in their opinions. I read books, I listened to podcasts. Not just about the disease, but about life and living… fully, joyfully and with purpose. I continued to work, setting short term and long term goals that gave me something to look forward to on the days when I felt terrible. Accomplishing those goals when I felt good gave me hope and strength. I kept a spreadsheet of every person that reached out to me, and I thanked them personally with a written note or email or text. The pure love from my people was amazing. Telling them how important they were to my recovery, energized me and gave me the opportunity to share and spread the gratitude that enveloped me.
I am just over a year post final reconstruction and 16 months post final chemo. The experience of my cancer- the entire experience – is one of the most transformative in my life. I found grace in tragedy. I believe that cancer (or any life set back) can make you better, kinder, wiser, happier, stronger, more humble, more loving if you choose to open your heart and soul to that transformation. And I now know that when I lost my hair I didn’t lose my identity, it was really just the beginning of discovering who I really am.
You can follow Lesly on instagram at @leslysimon72