Each chapter of the breast cancer journey is filled with a new set of challenges. With a mastectomy, there are drains to measure, tissue pain and swelling, the uncomfortable problem of having to sleep on one’s back for weeks with drains or a binder, and, of course, the extraordinary loss of important body parts that people were never intended to lose. For me, chemotherapy came next. Side effects can include nausea, diarrhea, mouth sores, nosebleeds, and exhaustion. In addition to the many prescriptions, I found acupuncture eases some of the side effects, but nothing could prepare me for the dreaded loss of my hair. Here is a window into my chemo experience.
For as long as I can remember I have always had long, thick dark hair. When I was in elementary school I watched “The Sonny and Cher Show” and Cher’s long, dark hair gave me someone I could identify with. I spent hours singing “I Got You Babe” into my tape recorder microphone, flipping my hair over my shoulders like I was on stage. Like many teens of the 80’s, hair was my livelihood, and the bigger the better, so the first time someone remarked, “It grows back” when I expressed my remorse about losing my hair due to chemotherapy, it really stung. I had to remind myself that I was practicing gratefulness on this journey to keep from snapping back, “Well, then why not shave yours off to join me if it’s not such a big deal?” I felt after three biopsies, two lumpectomies, and finally a double mastectomy, I had really given enough of my body to cancer; a bald head meant a constant cancer reminder every time I passed my reflection.
Fighting the notion of looking like Kojak, I researched cold cap therapy, a rental cap filled with cold gel that freezes the hair follicles and minimizes hair loss. Unfortunately, after lab reports showed cancer in a lymph node, my chemotherapy regimen changed from 90 minutes to over four hours, so after agonizing over it, I made the difficult decision to let go of my locks.
It is a household joke that I am always over-prepared. I am the teacher who plans my fall syllabus in spring, the mom who shops for Christmas in summer, and my husband never misses a chance to tease me about it. However, being prepared is an asset when chemo is on the timeline, so once I faced the realization that I would lose my hair, I knew I needed to plan for it.
For cancer patients, to wear or not to wear a wig is a very personal decision. Some women embrace the baldness, the scarves, and the beanies, while other women wear wigs to draw less attention at work or to keep their young children from being alarmed. I found myself caught between both opinions. I wanted a good wig to wear to visit my daughter, an incoming college freshman, not because she would be embarrassed but because I didn’t want to meet her new friends and have people remember her as the girl whose mom was going through cancer. I wanted one part of our lives to feel normal, especially after my daughter underwent such an unusual senior year due to COVID-19. I also didn’t want to have to explain to my own students in virtual learning why I did not have hair; for me, it would feel good to forget about the cancer and feel more like who I was before the diagnosis. Therefore, after a bit of shopping, I selected a wig with natural rather than synthetic hair so I could match my hair color exactly, and, I fittingly, named it “Cher” as a tribute to those carefree childhood days.
Photos: (1) With my friend and stylist, Royce, of J & F Gemelli, (2) Cher getting her hair dyed (3) Cher styled and ready for wear (4) me wearing Cher (5) a synthetic cap wig I loved wearing when I was in a hurry
Although hair loss may not happen the first day of treatment, the experience can still be quite frightening. The chemo chairs are comfortable recliners, and nurses offer warm blankets and pillows, but it didn’t keep me from crying the first time I sat down and saw the patients around me, one so weak and frail that she was moaning during her blood transfusion. The realization of where I was and the toxins I was infusing into my body really set in, causing a flood of emotion. It is hard to process and make peace with a cancer diagnosis. Will treatment really work? Will it do more harm to my body than good? There are no guarantees — only hope. These fears are a natural part of the journey.
I was impressed at how seriously chemotherapy infusions are taken and how tirelessly the nurses work. Before a patient begins treatment a port-a-cath is surgically inserted for infusions and a numbing cream is prescribed, so the infusion itself is painless. However, in order to monitor any unexpected allergic reactions, the first treatment is the longest and is administered very slowly; for me, it took over six hours. It takes two nurses to verify the patient’s name, birthday, and medication for each drug in order to avoid any mistakes. Luckily, for my first treatment I had Leta, such a caring, compassionate chemo nurse, someone who reassured me throughout the process and never left my side. In addition, hearing I was unable to have a visitor during chemotherapy due to COVID regulations, a dear friend set up a “chemo party,” a group text of friends who would send me verses and messages of hope during my chemo session. Between the chemo nurse and friends sending me texts, I never felt alone. Maya Angelou expressed it best when she said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
Photos : (1) My port-a-cath (2) My amazing chemo nurse, Leta, who, like so many health professionals, risks catching COVID each day so she can provide life-saving treatment to others
Chemotherapy has come a long way, and oncologists prescribe a wealth of medications to help manage side effects. Typically, steroids are administered before and after treatment, along with nausea and diarrhea medications. The day after treatment patients have very low white blood cells, so they need a booster shot to help rebuild compromised immune systems. These immunizations can cause bone pain, and oddly enough, Claritin has been shown in studies to combat the discomfort. Those lucky patients with insurance plans that allow Neulasta, a timed white blood cell injection box placed on the arm, do not have to return to the doctor for a shot. Although I am one of the fortunate ones to have health insurance, my plan did not cover Neulasta even during a pandemic, so each time I had to muster up the strength to get out of bed and return to the doctor’s office the next day with my COVID mask to await for the shot.
While most patients have mild side effects after chemotherapy, those with a history of IBS may experience acid reflux in addition to nausea, diarrhea, and mouth sores. I was, unfortunately, one of these patients and had my most severe side effects days four through twelve after each treatment. For reflux, my oncologist prescribed a strong acid blocker along with Sucralfate to prevent an ulcer. Chemotherapy can also cause inflammation associated with mucositis, making eating and drinking painful. When mucositis, or mouth and tongue sores flared, I found I couldn’t eat anything like bread, crackers, or cereal because they scratched my already burned mouth, so soup and Magic Mouth Wash, an antifungal medication with hydrocortisone especially created to treat oral mucositis, became my excoriated mouth’s best friends. I often describe it like having a week-long virus every three weeks. Medications to treat side effects were taken in addition to a Potassium supplement that doctors prescribe to safeguard the heart from damage that many types of chemotherapy like mine can cause. With all the chemotherapy drugs and nausea medications at the time of treatment, it is no surprise that some chemo patients refer to the “chemo brain” when they have trouble concentrating or articulating the exact word, and I certainly can attest to that feeling. Finally, chemo patients have to be careful about avoiding cuts or bruises right after chemotherapy because a small bump can turn into a terrible injury since the body doesn’t heal normally. Luckily, once I reached days thirteen through twenty I felt great until each new treatment cycle began again on day 21, so to stay positive I had to remind myself that the bodily changes meant the chemotherapy was working.
I did discover a few tips that helped me manage chemotherapy. I added a humidifier for the week after treatment because I noticed how dry my contacts were, making them impossible to wear at times, and for skin I avoided all sun exposure and applied lotion as much as possible. Since exhaustion can also be worse after each treatment, staying active can be challenging, but most patients agree that the more active one is, the less exhaustion is felt. As for emotions, there were certainly long days when I would suddenly burst into tears several times a day due to the steroids and hormonal effects of my chemo drugs, and Ativan, an anti-anxiety drug, was a lifesaver.
Neuropathy, another possible chemotherapy side effect, worried me. Even though I used cold gel pack wraps for hands and cold gel therapy socks (both ordered through Amazon) during chemotherapy, I still had some numbness and tingling after treatments. Following the suggestion of another survivor, I started using a 1000mg CBD lotion and added acupuncture to my regimen in hopes of avoiding lasting effects of neuropathy. After all, chemotherapy is such a strong toxin that patients are told to put the toilet seat down and flush twice after bathroom use for 48 hours after treatments to safeguard family members; women are told to have husbands use condoms during that period as well. It just demonstrates how strong chemotherapy is, so for me adding acupuncture with Western medicine to ease side effects seemed like a good strategy, and I went every week to try and keep my body balanced.
Photos: (1) & (2) Acupuncture to balance anxiety and my digestive system (3) a Moxie stick I used over pressure points and a diagram of the ear’s digestive points (4) beads placed on pressure points (5) with my acupuncturist at Balancing Acupuncture
Overall, my best advice for anyone going through chemo is to keep a daily journal of food, medications, and side effects because there is a pattern in each treatment cycle and figuring out what eases the side effects each day is key to being comfortable. Again, each patient’s journey is unique, so my experience does not necessarily mean it will be another person’s. Cancer centers have teams of doctors, nurses, physician assistants, nutritionists, and counselors, so there are professionals doing their best to keep patients as comfortable as possible during treatment.
Even though I had “Cher” I still felt emotionally unprepared for my most stressful side effect, losing my hair, so when my friend and hair stylist suggested I take control when my hair started falling out, I heeded her advice. She said with the length of my hair it could be traumatizing and she was correct. Two weeks after my first chemo treatment, my hair started coming out in handfuls at the touch of a hand. Unable to comb it anymore, I announced to my family that “it” was time. I had warned them that I would be an emotional wreck the day we shaved my head, so they reluctantly gathered for the ritual with scissors, clippers, and a razor. With my first tears I looked into my children’s eyes and A.A. Milne’s famous quote came to mind, “You’re braver than you believe and stronger than you seem, and smarter than you think.” I knew if ever I needed to be strong for them, it was certainly at that moment because life throws everyone curve balls, and I want them to remember that if I could face one of my greatest fears, they could face whatever challenges might come their way. Honestly, once it was all gone, there was a sense of relief. I had done it on my terms; cancer could not rob me of that feeling of empowerment.
Photos: (1) About three weeks into chemotherapy hair fell out by the handfuls, making it impossible to brush anymore (2) Deciding to take back control and shave it off
(Photo: July, 2020)
To my surprise, I have somewhat embraced my new image at home. Don’t get me wrong; I still wear “Cher” when I run errands, but I am making peace with the unrecognizable reflection looking back at me in the mirror. At first I had awful head sores appearing as red, itchy bumps all over my scalp, but Neosporin and Hydrocortisone helped them heal. There are still hard days ahead as I am only half-way through chemotherapy and still have radiation and reconstruction ahead of me on this journey. My nurse navigator suggested I create an inspirational photo album of quotes and verses to flip through when anxiety and fear creep in, which was an excellent idea. My husband can tell when I’m down and reminds me that I am beautiful even though I know this is not the image he married. Due to COVID and my compromised immune system, the kids now kiss the top of their mom’s head instead of the cheek, and I joke that they should give my head a rub for good luck. On my good days, I joke with my husband to tell the Bee Gees that there really is a “Bald-Headed Woman.” Overall, I am trying to view the experience like a rebirth, a chance to start over, mind and body. I look around and see so many heroes each day like, Sara, my chemo phlebotomist, for instance, who is so compassionate and fittingly has Proverbs 31:25 tattooed on her arm: “She is clothed in strength and dignity and she laughs without fear of the future.” I want to be like Teresa, the receptionist at my cancer center, who was diagnosed with Stage 4 breast cancer over fourteen years ago and shares her story for encouragement. Recently, I wished my survivor friend “happy birthday” and she told me that now every day is like a birthday. I hope to be in remission and have her beautiful outlook on life. Each day I reaffirm my faith by reading Esther 4:14 displayed on a plaque that a dear friend gave me: “Perhaps this is the moment for which you have been created.”