I sifted through the multicolored Jolly Ranchers, looking for the cherry-flavored one. I pulled it out, said goodbye to the receptionist, and walked out the doors of the radiation center with my husband, Dave. I glanced back to see the doors close and felt relief flood over me. It was December 23, 2019 and I was finally done with active treatment for breast cancer.
Christmas was in two days, and I’d already received the best present I could imagine. I was done. After an abnormal mammogram in the summer, five biopsies, multiple rounds of imaging, a lumpectomy in October, and 20 sessions of whole breast radiation, my active treatment was over.
When we got home, I went to my radiation treatment calendar and drew the final X over the last treatment. Dave snapped a picture of me in front of our Christmas tree with the completed calendar.
Done doesn’t always mean done
Then, I collapsed on the couch for a rest before dinner. All the excitement of finishing radiation had exhausted me. One of the side effects of radiation treatment is fatigue, which worsens as treatment continues. Some people experience this only mildly, but in my case, it was severe. I needed to minimize my daily activities, rest regularly, and go to bed two hours earlier than I was used to. That night was no different. I felt the familiar glaze come over my eyes after eating my last bite of dinner, and I headed upstairs to reapply my lotions and get into bed.
As I undressed, I looked down at my dark purple, peeling skin. Gingerly, I applied lotion to the areas and put on my pajamas. Another side effect of radiation is skin changes. In my case, I experienced burning and peeling that came on gradually and didn’t resolve until a few weeks after treatment finished. I bought lotions that would help minimize my discomfort and soft clothing that wouldn’t irritate my skin. I needed to be careful not to get my skin too hot or cold. My treatment was done, but my skin hadn’t finished peeling.
I could hear my family watching a Christmas movie together downstairs. As sleep overtook me, I wondered how long it would be until I would feel normal again.
It took time for the side effects from radiation to resolve. My skin continued to peel for several weeks, my breast was tender for a few months, and the fatigue persisted. I didn’t need to go to bed as early as I did during treatment, but I wasn’t quite where I expected to be. I was excited to jump back into life, but I didn’t have the physical or emotional stamina for it just yet.
As January dawned, life began to get back to normal. The excitement of the holidays faded, and the fog of fatigue started to lift. My husband went back to business travel, and I resumed my work at home. Virtual school was back in session, and there were only a few weeks left of the fall semester. My two sons were in 9th and 11th grade and were happy that I was back to being their learning coach.
I was also excited to be able to do laundry and cook again. For years, these were chores that I did but never particularly enjoyed. After three months of being in active treatment, I was happy to be able to fold the laundry and make dinner again.
While I celebrated these milestones, I also realized I needed to accept the fact that, even though I was finished with surgery and radiation, I wasn’t actually done.
In January, I started taking a new medication called tamoxifen. This pill would reduce the risk of my breast cancer coming back. It, along with other similar medicines called aromatase inhibitors (AIs), are commonly prescribed to people with hormone receptor-positive breast cancer like me.
These medications, when taken for 5 to 10 years after active treatment ends, are very effective. They work by reducing the impact of estrogen in our bodies. Tamoxifen is prescribed to pre-menopausal women, and the AIs are for post-menopausal women. They work slightly differently but have similar systemic side effects that can include hot flashes, vaginal dryness, fatigue, and depression.
I was prepared for those side effects but wasn’t ready for the emotional meltdowns I experienced shortly after starting the medicine.
The five o’clock meltdowns
After getting through a day of supervising virtual school and doing some homemaking chores, I was ready to collapse in bed – except there was still one meal to prepare, and the kids were tired of frozen pizza. As I dragged myself into the kitchen to cook, the beagles would start barking, the kids would start bickering, someone would complain about what I was making, and it was downhill from there. Before I knew it, I was yelling, crying, and trying to keep chopping the zucchini.
It was another five o’clock meltdown. Whatever emotional stamina I had during the day would evaporate, and I’d be a wreck. Rather than respond to the challenges in the home with flexibility and patience, I would yell or burst out into tears. Sometimes, my kids would blame the medicine, which made me even angrier. They were right, but talking about the medicine like that wasn’t okay. Their comments didn’t help, and I needed to figure out how to manage my new emotional landscape.
I began to develop some strategies to help me stay emotionally centered, especially around five o’clock, when I was most vulnerable, and I still turn to these tools today.
I reduced my daytime activities so I wasn’t exhausted by dinner time. I set boundaries with my loved ones, too, because it wasn’t ok to blame my emotions on the medicine. I started to walk away from a situation if I felt myself getting angry or frustrated. I learned to be aware of what might trigger an emotional response in me, so I could be proactive to avoid it. I began to communicate my feelings with my loved ones before I got overwhelmed. And lastly, I started to ask for help. Taking on too much would lead to physical and emotional exhaustion.
Within a few months, I realized that I was better adjusted to the emotional impacts of the tamoxifen. I could cook dinner without breaking down in tears. Things were improving.
And then, it was time to have my first post-cancer imaging.
Anxiety and fear came rushing back to me as the appointments approached.
There is a word used in the cancer community called “scanxiety.” It describes the anxiety that cancer patients feel as our scans approach. Scanxiety hit me hard during my first post-treatment mammogram. As soon as I walked back to the imaging room, I felt anxious. My heart began beating fast, and my breathing became shallow. Was I going to be a cancer patient again? I was overwhelmed with relief when the imaging came back clear.
I undergo imaging every six months and experience scanxiety every time. The imaging was benign for two and a half years, and nothing further was needed. But, in June of 2022, that all changed. A tumor on my left breast – the one that didn’t have cancer in 2019 – had grown. The radiology team ordered a biopsy on it. Unfortunately, it came back inconclusive. The pathology team, who interpret the samples, couldn’t tell if the cells were cancerous. I went through another lumpectomy, and I’m happy to share that the tumor was benign. It was a stressful process, and another reminder that this breast cancer journey is still full of twists and pivots, even though I’ve come so far.
As I walked out of the radiation center in December 2019, I looked forward to being done and recovered. I have a different perspective now. There is no done. Recovery is a process to walk through, not to be completed.