My Cancer Story
Ringing the bell after my final radiation appointment—I see it in my face that I look happy, but I am so tired, exhausted, and slightly crispy from the radiation.
It was a Monday afternoon the week of Thanksgiving in 2021 when my life changed forever. I was sitting on my couch when a text alert from my health care app came in. New Test Result—a message than I have come to dread. I had been waiting for these results since my breast biopsy appointment the past Friday. My mammogram in October came back abnormal, which hadn’t been unusual for me. I had my usual diagnostic ultrasound, this time it also looked suspicious, and was scheduled for three biopsies, which then turned into four.
As a opened the health app to get my results, there were lines for each of the biopsies. Invasive Lobular Carcinoma, invasive lobular carcinoma, invasive lobular carcinoma. Breast Cancer. My world just kind of crashed. Up until that point, I had been an active mom of two young daughters in elementary school. We had moved to Colorado for my husband’s job, and with his heavy travel schedule, I was staying at home with the girls. I was very active in their school, volunteering, carting them to all of their activities, and playing competitive tennis.
All the usual cancer questions flew through my head. What does this all mean? How bad is my cancer? What will this mean for my family? Am I going to need a masectomy? What about chemotherapy? Most importantly, am I going to get through this and be OK? Complicating things in my head was that I had just lost one of my dearest friends to colorectal cancer four months earlier. I had a front seat to what cancer is capable of. I had gone with her to appointments, been with her during many chemo sessions, went wig shopping, saw her lose her hair, be exhausted and sick from the meds, seen her battle time and again, sat with her in intensive care, and visited her several times a week in the hospital near the end. I knew.
The next few weeks were a flurry of appointments, scans, and more appointments. I visited with several surgeons, both breast surgeons and plastic surgeons, and tried to cobble together a plan. My driving thought was I wanted this out. I actually wanted it out yesterday. I learned from my friend that cancer was not going to play. I asked my care team what they would do in my shoes. They would give noncommital answers, but I knew. I knew that cancer can be aggressive, I also needed to be aggressive, especially since my type of breast cancer was known to be sneaky and could return. Double masectomy, no question. When I would share my decision with my care team, relief would come across their faces. I was making the best choice to survive.
I finally got my surgery date, December 21st. It wasn’t the most convenient time with it being right before the holidays, but I didn’t care. I knew the longer cancer stayed in my body, the better chance it had to spread. I had seen that movie. This also was during the end of COVID. A positive test would set my surgery date back at least a month. And so I shut my outside life down for the two weeks before my surgery. I stayed home and desperately tried to stay healthy. My family did all the errands, I got all the remaining Christmas presents online, I made everything for Christmas food ahead of time, and everyone else masked up if they were going out.
My surgery was stressful, but successful. I ended up having a double masectomy with sentinal node biopsy, and reconstruction with implants. The procedure was 5 hours, and when I went under, I didn’t know what I would be waking up to in the end. If my nodes were clear, I was good for the reconstruction. If not, chemotherapy and more surgeries would be in my future. I remember waking up from surgery to see the ace bandage wrappings on my chest. “Which is it?” I asked my husband. Huge relief to hear that it hadn’t spread.
The next few weeks were a blur, I only remember bits and pieces. I was on heavy medication, couldn’t get comfortable to get a good night’s sleep, had painful drains, and was generally miserable. My girls still joke that it is the Christmas that I forgot since I still don’t remember most of it. I also couldn’t drive, and so I needed help getting to all my follow up appointments. The drains coming out was my turning point, and I was starting to heal.
While my surgery was successful, and my tumor was out with no lymph node involvement, the tumor itself was large. Invasive lobular carcinoma isn’t like what most people think of when they think of breast cancer—a palpable lump. My breast cancer is single lines of cells, hence why it is considered sneaky. My actual tumor was over 5 cm, with other areas of in-situ cancer. As I was piecing together my treatment, the overall news was good. My Oncoscore (test on my tumor to determine recurrence probability) was low, chemo was not indicated, I would need to be on medication for at least 5 years, and I didn’t have lymphedema from the surgery. The bad news was that my team was recommending radiation. I was just over the line clinically with my tumor size for radiation to be recommended. I debated long and hard about this one. In the end, my thoughts returned to my dear friend. If my cancer did indeed return, I didn’t want to regret not doing something that could have prevented recurrence.
Radiation was scheduled, 25 sessions over five weeks. The appointments themselves weren’t bad, they were about 20 minutes start to finish, it was the getting there and living through it. March in Colorado is known as the snowiest month, and I am an admitted snow chicken. There were many days that I was driving to and from those appointments in snowstorms, white knuckling that steering wheel, but I still did it. My eternal driving force was to do everything to make sure the cancer was gone. As I got closer to the end, I was definitely more and more tired. I was also slightly burned from the radiation. I was happy to ring that bell and put active treatment behind me.
Speaking of the bell, a common misconception of cancer is that when you ring the bell, you are completely healed. The dirty little secret of cancer is that the mental healing can be worse than the physical healing. Will it come back? Every ache and pain becomes under the veil of suspicion. “Is this cancer?” Oncology appointments become a source of stress. Every blood test or scan is a source of anxiety. “Am I ok?” This is the part of cancer that only people that have lived through cancer, either as a caregiver or patient can understand. It can turn into a hypervigilence. Like if you are on top of it, you will catch it sooner next time.
My why becoming a therapist for people and families struggling with cancer is that when I was going through my own cancer battle and the aftermath, I desperately wanted to find a therapist who was also a cancer survivor. I would meet with my care team, social workers, and nurses. While they could empathize, they couldn’t truly get it. I found that when I am talking to individuals who have had cancer, although it may be different types, there is a cancer shorthand. You having a test done? I get that anxiety. You are awaiting bloodwork? I know the stress of that wait. You have your 6 month oncology checkup? I understand that you may not sleep great the night beforehand. I think there is value to have someone with lived experience that can truly understand and help you to move forward.