By Linda Dugan
The Start
On January 6, 2021, the day of the insurrection on the US Capitol, I learned that cells in my right breast were staging an insurrection. A door slammed shut on my life that day and I consciously choose to not look back.
A little history… I have dense breasts and have been resolute in keeping yearly mammogram appointments since my 30s (I’m 65). Into my 40s, my yearly appointments included sonograms and in my 50s, frequent 3D imaging. I never missed a yearly appointment. Then the pandemic hit. My annual exam was delayed by two months due to the facility’s Covid scheduling. I wasn’t concerned, but asked for the earliest possible appointment, which was January 6th, 2021. It was the first time in 30 years that my annual exam was after 14 months rather than 12.
When I walked out of the appointment, the tech handed me a paper and told me someone would call me. I read the paper in the changing room and realized I had cancer. The tech notes indicated signs of tumors in my right breast and right lymph nodes. My phone rang while I was standing in a waiting room filled with patients and a disembodied voice confirmed what I already knew. No one met with me or tried to help me understand my situation. I was told that ordinarily I would have a biopsy the same day but, again due to Covid, I would have to wait a week. No one directed me where to go next so I had to find my own way to the scheduling office.
Cancer and Covid
I called both my gynecologist and GP on January 6. My GP set up an immediate after-hours appointment with me. Before the biopsy results were completed, he strongly suspected triple negative breast cancer (TNBC), given the tumor size and the cancer’s swift progression. My GP had access to prior mammography and sonogram records (with no prior indications of cancer) and surmised that the size and spread were highly suggestive of TNBC. He was right. I was diagnosed with TNBC, stage 3C.
Thanks to my GP’s diligence and community connections, within days my husband and I had our first appointment with a breast oncologist through Roswell Park Comprehensive Cancer Center in Buffalo, NY. This is a story for another day, but if I had listened to the follow-up suggestions from my gynecologist and/or the facility that discovered the initial cancer, it would have been to my great detriment. Both recommended a breast surgeon, who I would not have been able to see for at least a month. My GP said, “You need an oncologist right now, not a surgeon.” And he made a personal call to a noted breast oncologist that same night.
My GP and oncologist have repeatedly assured me that the delayed mammogram may have actually been to my benefit (so to speak), as it was likely the cancer began after what would have been my annual exam. I’ll never know whether the delay meant the difference in staging—for better or worse. Both doctors also agreed that the initial tumor could not be felt by self-exam. By the time treatment started, I could feel the breast tumor. Nonetheless, “what ifs” occasionally creep in and I work to keep them at bay.
January 2021 was a blur of MRIs, scans, genetic testing, biopsies, port placement, and various doctor appointments, but in just over three weeks I went from the initial mammogram appointment to sitting in an infusion chair as the “red devil” (Adriamycin chemotherapy) was pumped into my body. I’m certain the tumor grew significantly in those weeks before starting chemotherapy. I give great credit to my oncologist and GP who facilitated the speed of these pre-infusion appointments.
Cancer anytime is traumatic, but cancer during a pandemic is its own special kind of hell. My husband was not allowed into any of the facilities where the pre-treatment exams occurred. He was only allowed into the first oncology, first surgeon and first infusion appointments. Only our sons and daughter-in-law were allowed in our home. Otherwise I was always alone, but beyond grateful for my amazing medical team and the incredibly supportive oncology nurses.
My close friends and family were there for me “virtually” and found unbelievably lovely and creative ways to support me when we could not be together. (“Ghosting” by other friends and family was a sad surprise, but I have since learned that it’s quite a common experience for cancer patients.) In the long run, I had to develop internal coping strategies knowing that, as much as my family and friends wanted to support me, the challenging treatment journey (I actually call it a forced march) would mostly be solo.
My Treatment
For chemotherapy, I first received four rounds of Adriamycin/Cytoxan (AC). After AC was completed, I then received 12 rounds of Taxol, followed by surgery (lumpectomy and axillary lymph node removal). The surgery results indicated I did not have a pathological complete response (pCR), as cancer cells were still present in my lymph nodes. It was disappointing as I had an amazing response to chemotherapy (the five-centimeter tumor shrunk to “pea” size), and my surgeon was optimistic. I then received 30 rounds of radiation, followed immediately with 6 months of oral chemo (Capecitabine).
Mental Health Support and Physical Recovery
My career was in mental health and, early on, I recognized the need for mental health support as a subset of my oncology treatment. Despite Covid restrictions, I was able to meet with a psychologist at Roswell. Within three sessions, she helped me develop coping strategies that I still use to this day. The strategies that work best for me include cognitive behavioral therapy (CBT) with an emphasis on cognitive defusion, which involves detaching from thoughts to observe them. This helps to break the cycle of intrusive thoughts. I also work on “flow state” strategies, where I am completely immersed in a high interest activity (in my case photography), where time and distractions can fall away. I find these strategies helpful in breaking patterns of intrusive thinking, fueled by anxiety.
I also found amazing support (via phone calls) from a cancer coach that I connected with through Roswell. She has been there with me through the ups and downs, and I consider her a dear friend. We have never met in person, and have never needed to. When Covid restrictions lifted a bit, I tried an in-person support group, but personally found it to be counter productive. I have also made it a point to write thank you notes, with explicit reasons for my gratitude, to literally everyone who has lifted me up and cared for me during my treatment. Expressing gratitude is shown to reduce anxiety and stress.
I participated in a six-week session of the LiveSTRONG fitness program for cancer survivors through my YMCA, which was a first step in trying to regain strength and mobility. In addition, I completed twenty sessions of physical therapy to improve strength, mobility and balance. Additionally, with a dear friend, I completed two winter hiking challenges (through infusion and oral chemotherapy) through a local organization. Some hikes were successful, and others I cried and practically crawled, but enough can’t be said about the physical and mental health benefits of being outside and walking during chemotherapy. The neuropathy side effects from chemotherapy remain a significant issue; however, I have a successful fitness routine developed through LiveSTRONG.
Fast Forward
I have now reached 2.5 years with no evidence of disease (NED)—but with my TNBC diagnosis, or any cancer diagnosis, the future is unsure. In the fall, I hosted a fundraiser and raised over $4,300 which went directly to research and TNBC foundations. I recently went through training at Roswell and have been confirmed as a cancer coach. My own cancer coach is as excited as I am.
I knew from the very start that I was in a new and unexpected life, and looking forward was the only direction I should take. I’m grateful to be here, grateful for an amazing health care team, grateful for all those that supported me along the way, and grateful to have opportunities to give my support to others who are just beginning this grueling journey.
Read More:
On the Podcast: Breast Cancer Conversations
The Benefits of Pilates for Breast Cancer Recovery
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