October is Breast Cancer Awareness Month, and one year ago, The Blackshear Times asked me to relate my experiences soon after I was diagnosed with lobular carcinoma – a breast cancer that only effects 10-13 percent of patients.
I thought it fitting to follow up now with where this journey has taken me. I didn’t know a lot about my condition at that time, but the doctors believed my tumor was less than 2cm, without any spread to lymph nodes nearby, and probably only at stage 1. This was great to hear. The treatment would be a single mastectomy of my left breast, no radiation, no chemotherapy, and 5-10 years of hormone therapy. The idea of losing a breast was scary, but the idea my cancer would be gone with this one surgery brought such peace to my family and myself.
But, November 12, 2019 marked the beginning of a very challenging year rather than the end. It turns out the type of cancer I have likes to hide; it hides from medical detection and appears smaller than it truly is.
My tumor was more than twice as large as doctors first predicted at 4.5cm and two of my lymph nodes came back malignant. This finding prompted a second surgery, a lymphadenectomy, to remove the lymph nodes from underneath my left arm. I’ve had 23 nodes removed.
After my second surgery, however, lymphatic fluid built up in my arm and torso causing pain and discomfort. It’s a permanent side effect. It can be alleviated with physical therapy and lymphatic massage, but will never completely go away I’m told.
Next came radiation – 25 treatments in all – every weekday for five weeks. But, I hit another delay and developed costochondritis (inflammation and pain in the chest wall, the costal cartilage connects each rib to the sternum) and had to take a week off to recover before finishing treatments.
To ensure I was getting a deep dose of radiation, my doctors used a bolos which tricked the machine into thinking my skin was thicker so it would give me a higher dose of radiation. My skin was so discolored and burned by the end of treatment I compared it, in jest, to crispy bacon.
Radiation doesn’t just cause outside disfigurement, it causes internal issues, too. When they removed my left breast, they put in a placeholder, an expander to help stretch the skin for an eventual reconstruction, but the radiation caused my expander to harden. It felt as if I was wearing a metal plate inside my chest, that rubbed and ground against my chest. I hated it, and wanted it removed as soon as possible. My body rejecting the expander also caused an autoimmune response complete with fatigue, rashes, and infections. I fought four infections in less than four months, and my doctors couldn’t do surgery until I had recovered from both the radiation and these infections.
When it was finally time to remove my expander, it was also time for the experts to figure out how to repair and rebuild my breast. Implants were out – it was obvious my body would reject anything foreign.
My doctor recommended DIEP (deep inferior epigastric perforator flap). Simply put, they cut you from hip to hip, removing skin and living fat tissue to replace your missing breast tissue. After the surgery, my chest resembled a patchwork doll that had been cut in half and sewn back together from several pieces of material. Talk about a blow to your self-esteem! I knew at that point I would never be the same, I would never look like the old me, and to tell you the truth, I battled a lot of self-hatred in addition to the extreme pain and slow healing process.
Just six weeks later, I underwent a total hysterectomy to help control the hormones that increase the likelihood of my cancer returning.
So what now? Will I ever be “normal” after all of this?
The good news is I am feeling pretty great these days! I’m staying busy with Family Connections. Serving others always helps me forget about my own troubles. My stomach still swells, and I haven’t been released to lift anything more than five pounds yet, but I’m starting to be active again.
I have one last surgery in November to even out my chest so that it appears more equally balanced, and that will bring a bit more recovery time, but I can do it! I’m finally approaching the end of my cancer journey – but not the end of my story.
December 31, 2020 I am going to be kicking this year out the door with a shout of triumph. Like so many of my friends and family, I’m glad to see it go. I’ll be welcoming 2021 in like an old friend and hopefully, I’ll be welcoming in a year of rejuvenation, a year of healthier eating, a year of love and travel, but best of all, a year without cancer.
• Stephanie Bell is Executive Director of Pierce County Family Connection.