As I approach the 10-year anniversary of hearing the words “I am 99 percent sure you have breast cancer,” I have many emotions: gratitude, fear, anxiety, hope. Having been diagnosed with stage 3 breast cancer in 2016, then learning it had metastasized to my liver, so stage 4, I had so many questions and so much uncertainty.
Since then, it has been a journey of self-reflection, relationship evaluation, insurance negotiations, family bonding, treatment appointments, doctor appointments, MRIs, PET scans, CT scans, bone scans, lumpectomy, mastectomy, four reconstruction surgeries, laparoscopic biopsies, the list goes on. It has taken a village to get here and my village is strong and unwavering. I recognize that I am extremely lucky to have this. I have had it from the very beginning, and it has not left me for one minute. I can honestly say that I have the best support network ever and that has made all the difference. Here I am, 10 years later and I am strong, healthy, and living my best life. I am here to tell what worked for me and give my recommendations for surviving stage 4 cancer.
Journal your experience
After I was diagnosed, I started a CaringBridge blog called Cardinals and Clementines. My sister had a stroke at 48 years old on the day she was supposed to drive me to one of my initial chemo appointments. When we saw a cardinal after that, she said it was our deceased loved ones checking on us. The first oncologist I saw told me the tumor in my breast was the size of an orange. I decided it was a clementine. So, when the calls, emails, and texts got too overwhelming to answer, I started writing updates in the blog so everyone could keep abreast of my health status. It became a very therapeutic exercise for me. I could express how I was feeling and then hit send and “poof,” it was sent out into the universe. Over the past 10 years, I have received many cardinal gifts: ornaments, cards, trivets, towels, necklaces, artwork, trinket boxes, mugs. I had our potter friend make vases with cardinals and a pink ribbon. All of these are special to me and are daily reminders of how blessed I am with the support I have around me.
Read books, not the internet
The first book I read was Dr. Port’s The New Generation Breast Cancer Book. This book was a lifeline when I was drowning in uncertainty and dread. I met Dr. Port, Chief Surgeon at Dubin Breast Center at Mt. Sinai in NYC, at a book signing for her book three months before my diagnosis. My dear friend and neighbor was a college roommate of Dr. Port and invited me to her book signing. After that night, I put it away and did not think about it again until after my biopsy. We had rented a condo in Florida for the month, and I told the radiology tech that I was due to leave for Florida that week. Her answer was, “Honey, I do not think you are leaving for Florida. I am 99 percent sure you have breast cancer.” That was Friday afternoon. Saturday night I searched for that book and read it cover to cover. Monday morning, I got confirmation and my journey began.
I also read The 50 Essential Things You Can Do“by Greg Anderson. He was diagnosed with terminal lung cancer and given 30 days to live. He is still alive today. He attributes his healing to The Law of Forgiveness, that it can set you free. I did all the things he said to do. I drew my tumor on paper and then blacked it out. I stood in my yard and made a V with my arms for Victory. I practiced forgiveness. I felt elated when I saw signs, a crushed clementine in the road on my walk, a clementine peel in the London Tube. I exercised even when I felt I had no energy. My husband, Mike, was a saint. He would get me to walk every day and kept a journal of every appointment, test, and scan which he still keeps today.
Be your own advocate
The day I was scheduled to start chemotherapy, the liver MRI showed lesions. My oncologist, Dr. F, had ordered it to “dot the i’s and cross the t’s.” No chemo that day because more tests were needed to confirm a metastatic diagnosis. After a few inconclusive biopsies, I had to have a liver surgeon do a laparoscopic biopsy. Verdict was in, yes cancer was in my liver. No longer curable, but treatable. For life. I would be on some drug for the rest of my life. Every three weeks. Once the cancer cells leave the breast, it is considered metastatic and treatment options change. Rogue cells lay dormant and can morph to avoid the chemo which is why maintenance continues for life, switching drugs when one stops working.
And so I started treatments. Heavy duty chemo for seven years, every three weeks. Now I am on my fourth line drug, Herceptin Hylecta, which is a targeted, monoclonal antibody with no side effects. Two of the drugs I was on over the last 10 years were fast-tracked by the FDA and I was able to start them when they were approved. They were not as forgiving and definitely took a toll. I owe my life to the doctors and nurses I have had so I am grateful for the drugs. We sold our house in Connecticut in 2020 and we are now in Florida for most of the year. We spend summers in CT but I am lucky that I can do most of my treatments in Florida. I will not give up the NY team that is on the cutting edge and sees all types of patients so scans every three months (now every six months) are always in NY.
Mike and I have continued to travel throughout. Just this past year, we have been to Japan, Scandinavia, California, Aruba, and Southeast Asia. I can usually adjust my schedule, moving treatment out a few days. The doctors let me go a few days beyond three weeks but never shorter. When I wanted to spend winters down south, my oncologist told me I would have to get an oncologist in Florida. I researched cancer centers and found an oncologist in Naples, Florida, who would see me and oversee my care. He understood that the NY Breast Cancer Oncologist would lead the team, as he is a general oncologist. He has since retired and I have another great doctor in Florida. Both the NYC and Florida teams have been kind and caring and always seem to be on the same page when it comes time to change drugs. When, for a few years, we spent the fall in Martha’s Vineyard, I found the doctors at Martha’s Vineyard Hospital very accommodating, and I was able to get my treatment done there. Wherever I go, there have been times when I was told treatment would be delayed due to the insurance company authorization not coming through in time. I ended up hiring a company to manage this, but after two years, I was able to do it myself. This year I will change to Medicare when I turn 65 which will make it easier since I will not have to switch the authorization every time I go north.
Stay positive
The power of positive is extremely strong. I have such wonderful people in my corner and they were my champions. They made Team Tami bracelets that said “Power of Positive” that we gave to everyone we knew. My husband still wears his. My family and friends are the wind beneath my wings. They walked in the Avon 39, ran 5 and 10k races for Susan G. Komen and Breast Cancer Alliance, sat with me in the infusion rooms, took notes for me when I was a deer in the headlights, raised money for breast cancer research and much more. My son and I have matching unalome tattoos for our respective journeys. One friend brought me holy water from Lourdes. It helps that my oncologist is always telling me not to worry because she has so many therapies in her back pocket. I have gone to a Reiki healer before scans who said she could sense “crumbs” in my midsection and “brushed” them away. Then I had a clear scan! I read Sheryl Sandberg’s graduation address to UC Berkeley one night when I could not sleep because of the steroids I was taking. She talked about Option A not being available, so kick the sh*t out of Option B. That became my motto. Luckily, my oncologist is supportive of anything that helps me stay positive as long as I continue my treatments in the infusion suite!
I read “The Healing Code.” I told my husband about it and he had me write it down for him. He and I would recite it every day (he still does). For 10 years, whenever I have scans, he is outside walking in Central Park, reciting the Healing Code. He has worn the same shirt for scan day for 10 years. We have our routine down. No food after midnight the night before. In the morning, we drive to Manhattan. Nuclear medicine first for a radioactive injection, then to radiology for CT scan with contrast. Grab a bite to eat, walk to the reservoir in Central Park, then back to nuclear medicine for the bone scan. We used to have to come back the next day for results but now they are online within an hour. The bone scan is always a bit daunting as there is a large square unit that comes down to within an inch of your face. It slowly moves down your body, scanning head to toe. The new machines have prongs that surround you and slightly touch. It is a bit terrifying, but I am comforted by the fact that Mike is out by the reservoir reciting the Healing Code. I have my own mantra that I repeat over and over during the scans, “Positive chi, positive chi, fill my soul and heal me.”
Trust your instincts and listen to your body
I went through nine months of heavy-duty chemo, Taxotere. I lost my hair, energy but I always listened to my body. I walked when I could and rested when I needed. My nails peeled and came off the beds, but I polished them and they looked ok. The veins in my arms failed and I got “chemo burn” rashes so I got a port put in my chest. When Taxotere stopped working, I went to the next drug, Kadcyla. This was easier with minimal side effects, only some muscle aches. When I went to the third drug, Enhertu, I hit a wall. My oncologist called it the chemo wall. I felt my body breaking down. I had trouble breathing and walking. Climbing stairs was a monumental feat. Thank goodness she listened to me and stopped treatments. I had developed pneumonitis and had inflammation in my lungs. Mike and I flew to NY for a lung biopsy thinking we would be there for a day. When the doc said no flying for three days (I had holes in my lungs after all), we made a weekend of it, saw the NYC marathon and had some nice dinners. Luckily, the biopsy showed no cancer, and I have been NED (No Evidence of Disease) for the last five years.
Early on in my journey, I supported our local breast cancer organization. I had friends there and signed up to walk in the “Survivors Walk” fashion show. When my scans showed evidence of disease, I pulled out. I felt bad, for pulling out, for my prognosis, for myself. In the end, I was relieved that I could just focus on my recovery. I had thought I would revisit this for this milestone, but I feel content and happy. At one of those events, they had a speaker who talked about metastatic breast cancer as a terminal disease. I felt sad sitting there hearing that, but here I am to tell you that it is NOT a death sentence.
Lean on your peeps
For the first year of chemo treatments, I was never alone. My friends and family drove me from CT to NYC, brought coolers of food, and stayed with me for the 5 or 6 hours the infusions would take. I had an entourage every time. I had friends going through cancer treatments who would Uber to treatment alone, put headphones in and go to sleep. At home, they would close the shades in their bedroom and lay in bed watching TV. I could not do that. I wanted my people around me, and they kept me going through thick and thin. Mike had me out walking almost every day, whether I wanted to or not. My best friend from high school, a physician, vetted all my doctors and read my pathology reports. Another dear friend drove from Connecticut to Florida with me and we called it The Soul Sisters Road Trip. My husband accompanies me to every appointment and comes to treatment every three weeks. It was hard for him during COVID, when visitors were not allowed. He drove me every three weeks from CT to NYC the day before treatment to get tested. He then drove me to treatment the next day and walked in Central Park while he waited for me. When I had surgeries, I had company every day to help with meals, drains, and bandages. What a blessing.
Look to the future
In the 10 years of my journey, a spotlight has been shone on metastatic breast cancer. I acknowledge that it is so important for early detection and mammograms, but I am so happy that there are people bringing awareness to metastatic breast cancer (MBC). A woman who was diagnosed around the same time as me with the same oncologist and the same name as me, has been instrumental in raising funds for metastatic breast cancer. She founded an organization called Metavivors and has an annual fundraiser called Light Up MBC. The ribbon for metastatic breast cancer is teal and pink (instead of the well-known pink ribbon). The hope is to educate people about metastatic disease and how it affects patients. Most of us are not aware of the toll it takes on us and our loved ones. I never knew it was a lifelong diagnosis. My oncologist said to think of it as a chronic disease like diabetes or high blood pressure. I will always be on something, it is treatable not curable. Thankfully, that may be changing. New drugs are promising and we recently were told that there are therapies on the horizon that may actually cure breast cancer. I still listen to my body, I walk three miles if I can, but sometimes gentle yoga is all I can muster. Some days I just rest. The Florida sunshine helps and the sunsets over the gulf never get old.
So, on this 10-year anniversary, I also get a new passport with a new photo. For the past 10 years, I have traveled with a passport photo that gets flagged all the time, even though I have Global Entry. It was taken after I started chemotherapy and steroids and I have a puffy, “moon-face” and am wearing a wig. I am hoping now that I have a new photo with real hair, I can get back into the country without being sent to a security officer. Power of positive!
Tami Berczuk is a patient advocate.
