10/8/2021 1 Comment
“I do not wish my anger and pain and fear about cancer to fossilize into yet another silence, nor to rob me of whatever strength can lie at the core of this experience, openly acknowledged and examined ... imposed silence about any area of our lives is a tool for separation and powerlessness.”
– Audre Lorde, The Cancer Journals (1980, 9)
I first got diagnosed with breast cancer in January 2021. My first reaction was, of course, crying and talking with my family. My next reaction was turning to read familiar and comforting words: Audre Lorde’s The Cancer Journals (1980). There was something about reading the words of another Black woman who had gone through the journey on which I was about to embark that bolstered me. Audre Lorde opens the book by identifying herself as a “post-mastectomy woman who believes our feelings need voice in order to be recognized, respected, and of use” (9). I, too, am a “post-mastectomy woman.” But it was quite a whirlwind to get to that point.
It all started with a routine mammogram. I had no lumps or symptoms of any kind. I was 41 and had my first mammogram 3 years prior. Usually, people start getting mammograms at 40, but I started a few years earlier because I had dense breast tissue that sometimes felt lumpy. Ever since then, getting mammograms was just something that I did every year out of habit. About a week after the mammogram, I got a call-back to do a diagnostic mammogram. I had to wait a month for an appointment. My husband accompanied me to the diagnostic mammogram appointment. I was glad he did, because afterwards the doctor called us into a room and said that they saw calcifications on my right breast that were concerning. She said I would need to have a stereotactic core needle biopsy, so I scheduled that for the following week. By the end of the week, I got a call from my primary care physician. My heart sank when I saw her name on my Caller ID. I knew she would only be calling me for one reason. She told me that I had a Ductal Carcinoma In Situ (DCIS), an early stage non-invasive breast cancer that is localized in the milk ducts. “If you have to get breast cancer, it’s the kind you want to get,” my doctor said. I thought that was an odd thing to say, but those words would later give me a strange sense of comfort. When I received this jarring news, I was home by myself with my 5-year-old son. I felt like the room was spinning and closing in on me as I struggled to figure out what my next step should be.
“I wanted to write in my journal but couldn't bring myself to. There are so many shades to what passed through me in those days. And I would shrink from committing myself to paper because the light would change before the word was out, the ink was dry” – Audre Lorde, The Cancer Journals, p. 45)
For the next few days, I felt like I was in a fog, even as I showed up to Zoom retreats and meetings. Like Audre Lorde, I wanted to write in my journal, but I was too overwhelmed to do so. The news was too fresh and too raw to share with colleagues, but it was all I could think about. Life kept going at break-neck speed with Zoom presentations, meetings, and classes. I was chairing a department, supervising remote school for my kindergartener, and teaching two classes. If that weren’t enough, my family was also in the process of selling our old house, buying a new one, and moving across town. We closed on two houses and moved about a week after my diagnosis.
When I met with the breast cancer surgeon, he told me that the treatment plan for DCIS usually consisted of two options: 1) lumpectomy followed by radiation and taking hormone blockers for 5-10 years; or 2) a single or double mastectomy. However, he explained that I would need additional testing to determine which treatment plan would be suitable. For the next four months, my schedule became packed with calls, surgical consultations, biopsies, MRIs, genetic testing, and research. Having breast cancer and trying to figure out what to do about it was becoming like a part-time job.
When I finally had the breast MRI in late February, I was shocked to learn that they found additional suspicious spots on both breasts. However, the MRI is so sensitive that it can easily detect abnormalities without being able to discern if they are cancerous or not. This meant I had to get more biopsies to investigate. One day in mid-March, I spent almost an entire day (8am-2:30pm) at Winship Cancer Institute having my body contorted into all kinds of awkward positions and my breasts poked, prodded, squeezed in three different types of biopsies! The fact that I had to wait 10 days until my follow-up appointment with the surgeon to go over the results of the MRI was horrible for my anxiety. It turned out, there was good news and bad news. The good news was that the spots on the left breast weren’t cancerous, but they would have to be monitored with further imaging every six months. The bad news was that the spots on the right side were more DCIS in a separate location from the original area. This meant that lumpectomy was no longer an option. It was official: I would need to have either a single or a double mastectomy.
It was stressful to have so many major decisions to make that would have such a huge impact on my life. Single or double mastectomy? Breast reconstruction or aesthetic flat closure? If I chose reconstruction, should I get implants or do autologous tissue reconstruction like Diep Flap? In Diep Flap reconstruction, the surgeon takes tissue from your stomach and uses that to rebuild your breasts. Ultimately, I chose a double mastectomy after extensive research and discussion with my surgeon because I had several risk factors for getting breast cancer again. One decision done. However, I was torn over the decision between breast implants or Diep Flap. After lots of research and surgical consultations, I chose Diep Flap reconstruction. At long last, I had a plan – I would have a double mastectomy and immediate Diep Flap reconstruction on May 4. But you know what they say about plans…
“I needed to rally my energies in such a way as to imagine myself as a fighter resisting rather than as a passive victim suffering.” – Audre Lorde, The Cancer Journals, p. 73
On my surgery day, due to unforeseen circumstances beyond my control, I was unable to do immediate Diep Flap reconstruction. Instead, my surgeon said he would do the double mastectomy and put in tissue expanders, and then I would have reconstruction three months later. I had hoped to be “one and done” with surgery so that I could get back to my normal life, but the universe had other plans. The surgery lasted 4-5 hours and I stayed overnight in the hospital and went home the next day. They also had to take lymph nodes from my right side to determine if the cancer had spread. Luckily, it had not. When the pathology report came back, it showed that the surgery had removed all of the cancerous tissue. This meant that I was officially cancer-free, and I would not need chemotherapy or radiation!
“Now I was going to have to begin feeling, dealing, not only with the results of the amputation, the physical effects of the surgery, but also with examining and making my own, the demands and changes inside of me and my life. - Audre Lorde, The Cancer Journals, p.46
It was very difficult to look at myself in the mirror in the first weeks after surgery. I cried the first time. I felt like I had undergone an amputation. The hard, plastic expanders felt heavy and uncomfortable. Each week, I had to go to the surgeon’s office for saline fills, where he stuck a needle into my chest to fill the expanders so that it would create a pocket to be used during reconstruction. Every time, my chest felt tight and painful. I also had to go to physical therapy twice a week and do exercises every day at home to regain the ability to raise my arms above my head and reach behind my back. I had my physical therapist take a picture of me on the day that I could finally raise both arms above my head – July 20 – two and a half months after my mastectomy!
On August 10, it was time for my breast reconstruction surgery. The surgery took 11 hours, and there were two surgeons and two surgical residents operating on me. I had to stay in the hospital for four days. For the first 24 hours after surgery, I had a morphine pain pump, and nurses had to check the blood flow in my new breasts every hour. Due to Covid, I was allowed two family members who could visit, but one at a time, so my mom and husband took turns visiting me and staying overnight. Getting in and out of the hospital bed for the first time was a seemingly impossible and very painful feat! I needed two people to help me out of bed, and then when I was getting back into the bed, the nurse grabbed my legs and threw me to “get it over with quicker.” I screamed out in pain. For the first two weeks after surgery, I had to walk hunched over and use a walker. Of course, that caused immense lower back pain. I also had to sleep in a power lift recliner for several weeks after each surgery.
As I write this reflection on what I have endured in the last ten months, I am grateful for this journey and counting my blessings. I was extremely lucky that my cancer was caught early. I was lucky that I did not need to do chemotherapy, radiation, or hormone blockers. I was lucky to avoid any major complications from the surgeries. I am fortunate and immensely grateful to have family and friends who have rallied around me. They sent flowers, Grubhub gift cards, and things that I would need for my recovery from my Amazon Wish List. My mom and aunt, who are both nurses, spent two weeks each with me after both surgeries, and several friends came to visit me as well. Thanks to the Family Medical Leave Act (FMLA), I was able to take four weeks off from work after my mastectomy, and eight weeks off after my reconstruction.
I am now eight weeks post-op, and it has been a slow process. When I get impatient, I have to remind myself that my body is literally stitching itself back together from the inside out. I have been prioritizing rest and meditation like never before. I wanted to share a bit of my story during Breast Cancer Awareness month to encourage women – especially Black women who have higher mortality rates from breast cancer – to make sure to get your routine mammograms and do your self-breast exams. Do not wait or put it off because of the pandemic or because you’re too busy or because you put everyone else’s needs before your own! Mammograms literally save lives. They certainly saved mine.
For Further Reading on Breast Cancer and Black Women: