“A lot can happen in three days” has been running on a continuous loop through my head over this past week. May 12th was my first Mother’s Day without my mom. May 13th was the day phase 2 of treatment began. May 14th was the one-year anniversary of John’s death. It was an incredibly difficult three days for me, exacerbated by radiation burns in my throat which have made it very difficult to swallow and to eat. Thankfully, that has started to ease.
I never wanted to become the story, but when I was originally diagnosed in 2011, I let myself become the story. I thought it was a way to show people what it’s like to have cancer, to live with cancer, and to live beyond a cancer diagnosis. It also lit a fire in me; a fire to fight, survive, and pay it forward. Every. Single. Day. Publicly sharing your story is daunting for many people [but] it is empowering for me. It puts cancer in its place. Everyone [with cancer] has a story [and] if telling my story helps just one person, then it’s worth it. It is all worth it. To anyone facing a cancer diagnosis, tell your story; tell one person, tell a friend, a stranger, tell me, tell ten people, tell 10,000 people… just tell it. Telling your story prevents cancer from being something sacred or secret and puts the power back in your hands. It also introduces you to all us survivors and thrivers. We are here and we can’t wait to meet you.
My original story began on November 4th, 2011, with 4 words, “You have breast cancer.”
“You have a lump.”
“We found something suspicious.”
“You have breast cancer.”
“Lumpectomy, mastectomy, chemo, reconstruction.”
“You are a survivor.”
For the last 12+ years, I have lived my life as a survivor. I went to all my follow-up appointments, followed all the rules, I walked and walked and walked, raised money for the cause, [and] lived my life out loud. But there was always a sword hanging over my head because breast cancer is never truly gone. It hides. It lurks. It may stay hidden, [or] it may burst back into sight. It is a dirty, sneaky beast.
On April 13, 2024, my story became 4 words plus 1, “You have METASTATIC breast cancer.”
“There is no cure.”
“There are treatment options.”
“There are clinical trials.”
“I will fight this.”
“We will fight this.”
“I am a thriver.”
There are an estimated 168,000 women in the US living with metastatic breast cancer (MBC) and the 5-year survival rate continues to improve, thanks to advancements in treatments that help people like me live longer, and with a better quality of life. Kisquali, the drug I started taking last week, was approved by the FDA in 2018. To anyone who questions why I walk, why I have walked since 1997, why I will always walk (including this November in San Diego), why together we have raised close to $250,000, why Susan G. Komen 3-Day® participants have raised close to $1 billion—this is why. The money we raise goes to fund research [which leads] to clinical trials [which leads] to better treatment options. While there currently is no cure for MBC, people are living longer, better lives with the current drug options.
I’m sure you’re asking where I am now.
On May 6th, I completed 10 rounds of radiation to shrink the tumors on my spine. Memorial Sloan Kettering completed blood work which included genetic mapping of my tumors and determined I have no genetic mutations which means I do not qualify for clinical trials. My treatment was transferred up to Albany to my original oncologist and his team. On May 13th, I began phase 2 of treatment which consists of hormone therapy shots of Fulvestrant every three weeks. My current pathology is identical to my original pathology which means this is treated as breast cancer even though it is in my spine, liver and lymph nodes. Kisquali is an oral medication that blocks certain enzymes that feed my cancer which I started this last week. I take three pills a day for 21 days then I get a week off and start all over again. This will continue for the rest of my life or until another protocol is developed. I will also get Prolia injections every three months to strengthen my bones which can be impacted by these medications. This treatment protocol will be so much easier than chemo and with far fewer appointments.
With this diagnosis, I will continue to live my life out loud. I do this for those who don’t want to, or just can’t tell their stories. This diagnosis is so much harder, but I want and need people to know I’m here if they need me. I want people to understand what MBC is and what it means, to see us Thrivers living with this chronic, not terminal, disease; and we will NOT back down.
When the Susan G. Komen 3-Day® began in 2003, each evening concluded with walkers pitching their pink tents and setting up camp alongside one another. Participants would decorate their campsite and mingle with one another before calling it a night under the stars. It was an experience unlike any other; an opportunity to soak up the Pink Bubble every second of the day. The community spirit was unending from the Opening Ceremony to the Finish Line Festival. Over time, the Komen 3-Day has evolved to moving camp inside a hotel, which comes with perks of its own, but there’s really nothing quite like the original camping experience. Luckily, the original Pink Bubble experience consisting of a sea of pink tents on the waterfront with amenities galore is still an option at the San Diego 3-Day®. While there are benefits to staying in a hotel, the pros of camping far outweigh the fears that you may have when deciding where to call it a night in San Diego.
For starters, the San Diego campsite is in a beautiful place on one of the city’s many beloved waterfront properties. In the mornings, there may be kayakers on the water or locals out for a paddle; it’s a very San Diego zen way to start your day! Plus, you can sleep for an extra 30 minutes in the mornings, waking up right where you need to be. No need to take a shuttle – you can walk over to the dining tent, enjoy breakfast and ease into your morning as the day’s hustle and bustle starts.
Ultimately, you’re located where everything is happening. After you finish walking on the route, you can eat, shower, enjoy your home-away-from-home and spend time talking with other participants. You don’t need to hurry to a shuttle line, decide if you’ll come back to camp for dinner and evening festivities, or choose between comfort and convenience. You can take your time, do some stretching, visit the Remembrance Tent, enjoy your meals, and soak in every second of the Pink Bubble spirit. Many people add their own flare by decorating their tents with twinkly lights, flags, posters, or a fun theme, turning nighttime exploration into an adventure. As the evening activities end, and the hum of conversation quiets down, you can sit under a space heater, enjoy the view of lights across the water, then tuck yourself into your own personal pink tent for the night.
You’ll have the chance to interact with many more crew members and walkers than you otherwise would. From those who serve your meals to those loading your gear bag in and out of the truck, you have the chance to get to know more people in the 3-Day community. It lends you the opportunity to connect with crew members and walkers who all have a powerful story to share – just like you! Plus, you’ll earn yourself a badge of honor for having experienced the 3-Day the way it all began.
“We strongly believe that every first-timer should experience camping at the San Diego 3-Day! The camaraderie and unique atmosphere at camp, from waiting in line for showers to making midnight visits to the porta-potties, are invaluable. The sound of chatter and laughter echoing from the dining tent adds to the sense of community and shared purpose that defines the event. It’s an integral part of the 3-Day journey, fostering connections and memories that endure long after the event is over.” —Sarah B.
In 2016, I was 48 years old and had gotten my annual mammogram/sonogram at the very posh and social New York City office of radiologist Dr. Miriam Levy. One of many easy, breezy routine visits where tiny, porcelain-skinned, wild-red-haired Dr. Levy would give me a clean bill of health from behind three ginormous computer screens with images of my cancer-free breasts. I left with a healthy report card in hand, excited to add that white paper scrap to my collection from prior years. I felt organized, I was taking such good care of “the girls” and I wanted to celebrate my lucky fortune. I will never really understand why I had that reaction that year, but I emailed my boss, and said I wouldn’t be returning to the office. Instead, I went to Sheeps Meadow in Central Park, one of my all-time favorite spots. I laid flat on the bright green grass and looked straight up at the blue sky and felt very, very grateful. I even took a picture of the lawn that day. It was risky to not go back to the office, but a greater voice was urging me to honor my health by grounding and thanking the universe. There are so many anecdotes to that day’s visit to Dr. Levy’s office; running into an old work friend who shared the same birthday that I hadn’t seen in years; the woman who told us she comes in every six months, instead of waiting a full year, because the waiting was too much to bear; the woman who said she always gets worried when it takes too long to see Dr. Levy after the tests because it means bad news. And it does, as I found out the very next year, when I went back in at age 49.
I didn’t run into anyone that visit, and I did wait a very long time for Dr. Miriam to call me back to her office. But I was too naive to be scared, so I just waited as we all do at busy doctors’ offices. She called me in, looking paler and tinier this year, even though her hair was bigger. She said there was something suspicious that we should biopsy, so I said, with no fear, “Let’s do it! Can I do it now?” And because it’s New York City and a posh office, the answer was yes. So, a smush, clip and ouch later, I was all done, once again feeling very organized that I was taking care of “the girls.”
It was a few days later on Thursday, March 23, 2017 and I was taking a cab down the West Side Highway to work at 1 World Trade Center. My cell phone rang and Dr. Levy was on the other line. “I’m delighted to hear from her,” I thought. That was a rookie reaction. It was not a social call; it was a call to tell me that I had cancer. I was teary-eyed in the back of a yellow taxi, speeding down the West Side Highway with my window all the way open, looking out at the Hudson River. My cell phone was pressed to my ear, the cabbie looking at me through his rear-view mirror, listening to me sob. I had breast cancer.
I was in utter disbelief. I managed to end the call with Dr. Levy, pay the cab driver, show my badge to security, remain calm in a crowded elevator, make it to the 18th floor, walk down the corridors, past offices with colleagues in them, slide my glass office door open, then shut, dial my parents at home and bawl. “I have breast cancer,” I stuttered. Four life-changing words I’d never thought I’d utter. That moment feels like yesterday, but when I look back at the selfie I took in my office that day after hanging up with my parents, I feel like I look like a baby. A lost baby, and I realize that was a lifetime ago.
That Friday, in an unbelievable turn of events, I was let go from my job. After 11 years of working with that company, the one-two punch of a cancer diagnosis and losing my job was devastating. It all felt like the end of life. Cancer is scary, especially when it happens to you, and in New York, top media jobs are far and few between. It is very hard to land one, especially at the age of 49. I suddenly felt very old and frightened, and to this day I still feel the ramifications of that one, two punch.
Treatment was with an excellent team at Memorial Sloan Kettering. My breast surgeon performed a successful lumpectomy, and out to dinner that night I went. Treatment for my stage 1, IDC breast cancer, Onco score 18, included chemotherapy, radiation and Tamoxofin. It was grueling, and I spiraled into early menopause with hot flashes, falling spells, and crying jags. My mental health crashed. Tamoxofin comes with a warning about mental health side effects which I took seriously, conferring with both my psychiatrist and my oncologist. We all agreed I should try a half dose for a month and see how it goes. I also had to stop taking my anti-depressant/anti-anxiety medication. And everything seemed OK, didn’t it? So, I moved on to the full dose, but after four months my brain chemistry changed. The trauma of the cancer diagnosis and the job loss led to a total identity crisis that was amplified by chemo-induced menopause. I was no longer just fighting breast cancer. I was also fighting for my mental health, and that has turned out to be a fight for life, and the fight of my life. I used to blame the loss of my mental health on the Tamoxofin, but the truth is, I was struggling with my life. I wasn’t happy; I was single, lonely, working very hard in a stressful job in a tough city. I didn’t have it all, and I wasn’t grateful enough for what I did have.
I wasn’t on my feet yet when a second cancer in my other breast appeared in July of 2019. I wasn’t strong enough for a brutal second round of fighting, and I was more alone than ever, having scared and alienated many friends and family. They had known me as a funny, independent woman. They did not like, nor could they handle, the scared child I had become following my diagnosis. Who was I? What had I become? Where had that old me gone? Would she ever come back? I remember sitting on a sofa in a friend’s living room, talking in a monotone voice, wondering if I would ever laugh again. Spirit and soul had left me, and I was frightened senselessly by the excruciating prospect of more chemotherapy and medication that would set me back, yet again, mentally. Following my second diagnosis, I had a lumpectomy and radiation. On the cold floor in my dark apartment in the late fall and early winter nights leading, I had many haunting dark nights of the soul when COVID came. I left New York and moved to California to reclaim my life, and it was in San Diego that I found beauty, peace, pride and love in the Pink Bubble of the Susan G. Komen 3-Day®.
A friend of mine was walking to honor a close friend of hers who had lost her fight with breast cancer, and I wanted to walk with her in November 2023. I wanted to honor her friend, honor my own fight and raise money to eradicate breast cancer. It seemed like such a terrific way to get into shape, enjoy San Diego, and raise money for a cause close to my heart. Little did I know that the Komen 3-Day would show me I was not alone, and walking would fuel me to fight again. I discovered that I had sisters everywhere around the world and we were all in this together. I had never felt that before and it gives me a reason to live. On March 27, 2024, I received my third diagnosis that months later was confirmed Stage 4 breast cancer that had metastasized to my lungs, colon and chest. I have the most glorious pink sisters along with me for this journey and I am stronger, more satisfied with my life. I was still rebuilding it, but I have come a long way, and I am eager to face and fight cancer again because the rewards are moments of exuberance and community that define the Pink Bubble.
One of my favorite memories from the 2023 San Diego 3-Day® that I’m looking forward to experiencing again in 2024 includes the rally call for survivors and those living with breast cancer to lead the walk on the first morning. It was profound and stands alone as one of the most awesome moments in my life. I was overcome by emotion as we gathered together, feeling as if we were all stars with everybody cheering us on. It was magnificent. It didn’t feel like the start of a walk, it felt like a ceremony celebrating life. Since it was my first 3-Day, I didn’t know survivors would be called out. And out of nowhere, I just burst into tears. I felt the floodgates open. And it was so cathartic. These were my people. I have people. And there they are in all their glory. It was a stunning moment. Indescribable. Time stopped still. I moved along with the crowd of survivors, humbled and in awe at the same time. It was the first time I saw beauty in the cancer world; no pain, no fear, just joy, love and laughs—the Pink Bubble. The Pink Bubble is protected from the outside world fiercely, filled with kindness, support, love and vulnerability.
I also loved seeing all the local policeman on their bikes, decked out in pink gear, radios blasting tunes to keep us moving. I loved seeing the local high school cheer squads, the wild outfits, hearing the poignant stories of why women walked. I loved learning how the organization helped those in need, and I loved the Closing Ceremony. Once again, survivors and those living with breast cancer were called to lead all the walkers, not to start the walk but to finish it. And as we held hands, we walked past friends and family, and I looked every single person I passed in the eyes. And they looked right back at me, directly into my eyes with such love and adoration, it was unbelievable. I couldn’t get enough of it. It was as though all those years of starvation for love and affection were melting away. When the days get hard now, I look forward to experiencing that again. I hope to experience that again.
As everyone cleared the lawn to return home, I jumped on the stage with my survivor rose and danced, which my friend videoed. Although I don’t love how I look in the video, I LOVE that video and I posted it on my Instagram anyway. It is me; the me who walked through fire and got to the other side, the me who is facing the fire again, but with the Pink Bubble behind her. I have never in my life experienced the level of unconditional love, support and recognition that lives inside the Pink Bubble, a 72-hour human experience packed with enough love, spirit, wisdom, humor, audaciousness and support to get the sisterhood through the hardest fight of their life. It is a 72-hour lesson in human compassion, empathy, resilience, and determination. I felt safe, loved, free, happy, and unencumbered. I felt rewarded, challenged, lucky and important. I could be myself and talk to anybody about anything. I was seen and heard. And I looked and listened. Because that is the glory of the Pink Bubble.
I need the 3-Day to survive. It is an essential part of who I have become, and I want to be a part of the end of breast cancer by raising money for the cause. I can’t wait to see everyone again in San Diego.
