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The Hurricane

From LCIS to Invasive Ductal Breast Cancer

Hurricanes are commonplace in North Carolina, but the greatest ones, like Fran, Floyd, and Florence, can never be forgotten.  Life crises, like hurricanes, can be varying strengths, but those with greatest magnitudes leave lasting scars. My life’s greatest hurricane made landfall on May 18, 2020 in the middle of COVID-19, when a radiologist called to notify me that I had Invasive Ductal Cancer, the worst moment of my life. The feeling of sheer terror and desperation is forever locked in my mind. However, like a hurricane that begins brewing out at sea weeks before, my breast cancer journey actually began on 9/11 with my first breast cancer scare, a lumpectomy which turned out to be fibrocystic, followed by a more serious scare in 2014.

In 2014, I was a married forty-seven-year-old mother of two who considered herself in excellent health when one evening I started having spontaneous breast discharge, some of it clear but other times cloudy and a little bloody.  I was completely panic-stricken and asked my husband, a reporter, who was out-of-town on assignment, to come home immediately. The days that followed were filled with an ultrasound, a needle biopsy, and a lumpectomy to diagnose LCIS (Lobular Carcinoma In Situ), abnormal cells in the milk duct. Not to be confused with DCIS, Ductal Carcinoma In Situ (Stage 0 noninvasive cancer inside the milk duct), LCIS is abnormal cells that are a marker that breast cancer could develop, and doctors say women only discover LCIS by chance. Having witnessed my sister-in-law’s battle with breast cancer and eventual death seventeen years earlier, I was certain I did not want a similar journey and asked about a double mastectomy.  One of my early surgeons explained to me that doctors didn’t cut off a body part just because cancer may or may not happen one day and that LCIS only meant a chance of cancer not a likelihood.  She suggested that my insurance may not even cover a mastectomy without a cancer diagnosis and assured me that breast cancer had come a long way since my sister-in-law’s experience; monitoring a condition like LCIS was the protocol today.

Indeed, research supported her analysis. According to two twenty-year longitudinal studies following thousands of women with LCIS published in the National Library of Medicine, my chances of developing breast cancer were around 11% the first six years, rising to 15% – 17% at ten years; at worst, I had an 85% chance of not developing it. By the way, only 5% of women in these studies underwent a preventative mastectomy at the onset of diagnosis.

I tried to find peace living with LCIS. I compared my diagnosis to that of a child of a diabetic since the child’s chances of diabetes are increased but certainly not definite.  Ironically, labs from an annual physical showed my Prolactin levels were elevated, which seemed to be a mystery to my breast care surgeon and the endocrinologist I started seeing. I was told it could be my anti-depressant or it could be hormones elevating the Prolactin; no one seemed to know. I will always suspect  it was somehow related to the LCIS although doctors could not confirm it.

Just when I thought the storm had passed, a second wave blew through in 2016 with yet another suspicious mammogram that led to yet another biopsy followed by another lumpectomy in the same breast as the last one.  Because I am one of the fortunate ones who has health insurance, I began seeing a high-risk breast care specialist at Duke Medical Center.  On our first meeting I expressed my fear of developing cancer and my wishes for a double mastectomy if that day ever came. My surgeon agreed to my wishes but also agreed with others before her that LCIS did not mean that day would ever come; I was simply at a slightly higher risk.  To reassure me she ordered the BRCA breast cancer gene test, which determined that I did not carry the gene, and she suggested that Tamoxifen may lower my chances of ever developing cancer.  She claimed studies showed a chemoprevention drug lowered the risk to 7.5%.  In hindsight, I regret not trying Tamoxifen but having read negative experiences, including its potential to increase chances of depression which I was already prone to, I hesitated about taking Tamoxifen since it would not eliminate LCIS but possibly lower the chance.  I struggle with this regret today, but, as my minister has since advised me, regret does not help healing, so I am learning to let it go.

A few weeks before my storm finally made landfall on May 18, 2020, I almost rescheduled the annual mammogram due to fears of getting COVID; now I am grateful that I did not. After the mammogram showed a suspicious area, I had my third biopsy and was advised that it appeared to be DCIS, which is not invasive cancer, so when the radiologist notifying me said it was Invasive Ductal Cancer, I was in disbelief and had to ask the doctor to repeat the diagnosis a few times. After the call I fell to the floor crying. Like so many years earlier, I called my husband who quickly left work to be at my side. I was in complete shock at the news, and my body started shivering for warmth on that hot May afternoon. I have since read upon hearing her diagnosis  actress Julia Louis-Dreyfus said she was “to-my-bones terrified,”  which sounds pretty accurate to me.

Like hurricanes, just because the eye has passed, the danger is far from over.  Storms with great wind gusts go on for hours before the storm is safe enough for homeowners to survey the damage. The days following a cancer diagnosis are like homeowners waiting to survey the damage; they know it is bad and sometimes the agony of waiting to see the damage is the worst part of it. Since reconstruction would be the second part of my surgery, my plastic surgeon and my breast care surgeon had to coordinate schedules, which was tricky so there was a bit of pleading, or nagging to be more accurate, on my part; I could barely eat or sleep from worrying about the cancer’s spread. Between May 18 and June 2  we had constant virtual and in-person appointments to prepare for surgery. Extensive lab results confirmed that I was Triple Positive, meaning I am estrogen receptor positive, progesterone receptor positive, and HER2 positive.  The oncologist giving me the news that I would need chemotherapy must have seen my tears but his face never betrayed it. Since cancer made me at a much higher risk for developing COVID, I  was petrified I would develop it, causing the surgery to be postponed, so our family was particularly paranoid, and I stopped leaving the house completely except for doctor’s appointments. My kids had to drastically limit exposure to others, and my husband took off all work clothes and washed carefully before greeting me at the end of his day. Two days before surgery, my COVID test showed I was negative, and I was relieved to get the greenlight for surgery. 

surgery during COVID-19
                            

Because of COVID, my husband was unable to see me once he dropped me off for surgery, and he was not allowed to visit me afterwards. In addition, doctors would call rather than meet with him for an update after surgery. COVID made the experience so impersonal, and he couldn’t stand my going through such a major surgery alone. Hoping to reassure my family, I left them all notes to find during my surgery reminding them that I was not afraid and that I was relieved to get the double mastectomy behind me. However, I was anxious, so when I received a card from a relative the night before reminding me to take comfort in knowing that God was hearing my name several times a day as she and others were praying for me, I carried that thought with me to feel less along in the hospital. 

With Atticus

The week of surgery would prove to be the worst week of all for our family. As if having cancer during a pandemic was not stressful enough, our beloved family dog of fourteen years, Atticus, became ill and passed away two days after surgery. I had four drains coming out of my sides and was in a great deal of pain when my family helped me walk into the vet to say good-bye; the accumulation of emotions felt almost more than I could bear. Throughout my diagnosis he had been such a comfort, snuggling with me and always watching over me with his big dark eyes as if he understood my immense sadness. A day later lab results revealed cancer in one of the two lymph nodes removed during surgery. Furthermore, I had ENE, an extra nodule extension, meaning it had broken out of the lymph node and into the surrounding tissue, in addition to LVI, lymphatic vascular invasion; all this meant the chemo would now be strong, four drugs, TCHP (Taxotere, Carboplatin, Herceptin, Perjeta) and radiation would also follow. Strangely enough, there was no cancer in the left breast, and I had just remarked a week before surgery at how peculiar that I had gotten four mosquito bites on the left side of my body but none on the right. It was an incredibly hard week, and my aunt shared a Persian proverb with me that when a pet dies in a home where someone is sick, it is believed that the pet has taken the illness from the house.     

In the weeks that followed I began mulling through my storm’s destruction and started the cleanup. My oncologist ordered bone and body scans to see if the cancer had spread. Waiting for results was agonizing. My mother came to console me. No matter how old you are, there’s no comfort like having your mother hold you in a crisis. My sister, who carries on a perfectly normal life despite being diagnosed with inoperable brain cancer eleven years earlier, reminded me each day that faith is crucial to healing. When I got results, I was incredibly relieved to hear that the scans were clear; now there was good reason to think that we had gotten the cancer and that the chemo and radiation would address any that escaped through the lymph node. The chemotherapy drugs plus a year of Herceptin create an excellent prognosis; studies show no recurrence in approximately 94% patients undergoing the regimen. Still, it would be a long journey ahead. To gain strength I asked family and friends to pray for me and with me, and I honestly could not have made it through this journey without prayer warriors in my life. Friends sent me care packages, daily devotionals, and messages that they were praying for me. Some set up a meal train to bring dinner during my upcoming chemotherapy, and others sent our family gift cards to restaurants. As a daily reminder I created an image board, filling it with my favorite scriptures from Philippians, Isaiah, Jeremiah, and Psalm. I added pictures of dreams I have to see my children graduate, marry, and have children of their own.  I  started a list of everyone I’d ever known who survived breast cancer and added the name of every new survivor I met along the way. Then I lined the outside of my pantry door with every card I received to reread in my darkest hours.

Photos: (1). My daughter emptying and measuring my drains 3 x a day for 14 days (2). My mom, a kidney cancer survivor and my sister, diagnosed with an inoperable brain cancer twelve years earlier (3). I turned the pantry door into a visual board of with dreams, verses, and cards

Sometimes as a storm dies down there is a blessing, a rainbow. Along my journey survivors have told me to watch for the blessings that would come from my experience. I have only completed step one of my journey: double mastectomy. I still have a long road ahead with chemotherapy, radiation, and reconstruction; however, I am already finding blessings. First, I am more grateful than I have ever been. As terrible as cancer is, I know there are worse things out there, like losing a loved one. I would rather go through cancer ten times over than to lose a loved one, especially a child. Five days after surgery I was able to cover my mastectomy drains and walk into the school to see my daughter accept her diploma. Having missed her senior year due to COVID-19, I was grateful to be able to share that experience with my family.

There have been other blessings as well. Early into my diagnosis, I awoke in the middle of the night with a feeling of immense peace and felt a voice telling me that I now had a new purpose. I had just remarked at the dinner table the day before that my husband and I would need activities when we become empty nesters and especially when we retire one day, and I didn’t know whether we would be helping at voting booths or getting involved in charities we felt passionately about, but we would give back somehow. I now know one purpose will be being active in the fight against breast cancer.

Another blessing is how deeply I love now. I love my husband for holding my hand so I can get to sleep each night, my children for helping me stay strong, my family and dear friends for supporting me through calls and frequent texts, and for my wonderful prayer warriors, some I have known since childhood and others I have just met, who ask God to heal me.

I have been initiated into a sisterhood that no one wants to join but one that creates an inseparable bond all the same. I am incredibly blessed to have a  group of fellow breast cancer survivors who support me through this journey. It feels like we have known each other our whole lives because no question is off limits; being able to share the intimate details of what cancer destroys in its path with someone who has weathered the storm empowers me and helps heal the soul.

 It is easy to have friends on our sunniest days, but to have loved ones go through the rain with me is truly humbling. I have Jeremiah 29:11 taped to my desk. It reads, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” It reminds me to be grateful for each day and to look forward to the chance to hold someone else’s hand through the storm. 

(A week after the mastectomy ) Excited to join my family in seeing my daughter graduate.

Coopey, Suzanne B et al. “The Role of Chemoprevention in Modifying the Risk of Breast Cancer in Women with Atypical Breast Lesions.” Breast Cancer Research and Treatment vol. 136,3 (2012): 627-33. doi:10.1007/s10549-012-2318-8 https://pubmed.ncbi.nlm.nih.gov/23117858/

King, Tari A et al. “Lobular Carcinoma in Situ: A 29-Year Longitudinal Experience Evaluating Clinicopathologic Features and Breast Cancer Risk.” Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology vol. 33,33 (2015): 3945-52. jjjjjdoi:10.1200/JCO.2015.61.4743 https://pubmed.ncbi.nlm.nih.gov/26371145/

Tunneling Through Darkness

For months I powered through a tunnel of darkness, only to step out into a deeper shade of gray.   I was stunned and speechless, feeling deceived by my own misconception of what the end would be. Without pause, I had raced as fast as I could with my focus straight ahead at the tunnel’s exit. I believed the outside of the tunnel would be filled with joy, sunlight, and restoration, but instead it was drab, unsettling, and the heaviness weighted down my every muscle.  The darkness caused fatigue, and yet, ironically, sleeplessness. Eventually, even food lost its lure as my body betrayed my mind.  I thought I’d feel relieved emerging from the intensive treatment.  I didn’t.

My journey through the tunnel began with a mastectomy followed by eighteen weeks of chemotherapy which included infusions of four drugs every three weeks. I kept looking ahead, sure that once I maneuvered the next phase of sixteen daily radiation treatments I would finally exit into sunnier days. After all, the radiation wouldn’t cause nausea or diarrhea like chemotherapy. Neuropathy would no longer be an issue, so my daughter wouldn’t have to continue escorting me downstairs each night like Emily Blunt in Young Victoria.  However, radiation, like chemotherapy, presented its own set of unique challenges, which caught me by surprise.

  

In half of my radiation treatments I wore a metal mesh to intensify beams to area of my armpit which once contained a lymph node of cancer cells. Before radiation, I was first “marked,” meaning areas of my breast, underarm, and upper neck were aligned with x-rays, and the skin itself was tattooed with a Sharpie and stickers so technicians knew exactly where the radioactive beams should go. My radiologist was transparent in warning me that radiation would age a segment of the ribcage and that it would always show up on x-rays.  More importantly, because the section would be aged by radiation, any fall or car accident could potentially cause the ribs to break, and she wanted me to be cognizant of it in the future.

The radiation procedure itself was painless but unnerving; breast cancer patients are naked from the waist up, their arms placed in stirrups so that they don’t move. They face the equipment for fifteen minutes, which can seem like a lifetime. It is an extremely vulnerable situation, and I cannot imagine how a victim of sexual assault endures the procedure. I found myself alone with my own thoughts and fears, once breaking down into an ugly cry during radiation. Thankfully, my radiation nurses comforted me throughout the process.

Physical effects were gradual and cumulative so by the end my skin was blistered and raw under the arm and on the ribcage. The week after treatment ended my skin was at its worst – dark red and blistered to a 3rd degree burn. Sleeping and touching the right side of the body was extremely painful, but as the radiologist explained, I had received a lifetime of sun damage to kill any cancer cells that might have remained after surgery. Radiation is about light beams, and I marveled at the power of light in healing the body.

Like chemotherapy, some of radiation’s side effects were not easily apparent. For instance, fatigue got worse and my daily strolls, which I found empowering, became infrequent. There was still a metal taste in my mouth and even water tasted bitter. Most alarming was that my labs showed my white blood cell count had dropped to 1.4 because my bone marrow had taken such a hard hit from chemo and radiation; the normal range is 4.8 – 10.8. I found cuts took longer to heal, and since I worried excessively about catching Coronavirus since there was not yet a vaccine, only leaving the house for doctor visits.

Although the physical consequences of cancer treatment can be brutal, the hardest challenge for me was fear. Regardless of what type of cancer, any time someone passed away from it, I felt as if I lost a teammate because cancer patients feel kinship to one another; I spent sleepless nights wondering if Kelly Preston had undergone traditional treatment like I had from the start, how Ruth Bader Ginsburg ever found the strength to battle cancer four times, and if I would develop a second cancer like Robin Roberts.

When I finished radiation and stepped out of my journey’s tunnel, my hair was starting to sprout fuzz and eyebrows were showing signs of return, so I didn’t understand why I could not shake the dark storm cloud of anxiety that filled me day and night. As a result, I couldn’t sleep and lost interest in food, causing me to lose weight when I needed to build strength.  Mentally and physically, it felt like I had been running a marathon for several months; I was an exhausted, emotional mess and everything made me cry like I had just finished the conclusion of The Notebook. I struggled in silence for some time before finally talking to my oncologist who put my mind to ease by telling me that my feelings were normal due to all that my mind and body had endured. She explained there is no set time to mourn a cancer diagnosis and survivors all manage differently with some feeling my emotions at the onset of a diagnosis and others at the end of treatment. It felt like I had been treading water for a long time and couldn’t see land. My oncologist and I agreed upon adding medication to my regiment, and within weeks I felt calmer and more in control of my emotions. Appetite returned and my white blood cells slowly started to increase closer to the normal range. I learned there is no shame in asking for help when the darkness persists.

Once the heaviness of depression began to fade, I started looking for the Godwinks in everyday life. For instance, friends sent me messages that I was in their prayers, some coming at exact moments when I felt panic and fear. Colleagues humbled me by donating their shared leave when my paid leave ran out. Once I was in the grocery and someone approached me because he had read my blog and felt an urgency from his sister who had passed from cancer to tell me that I was in his prayers. Another time I received a card from a stranger who had lost her child and wanted me to know she understood grief was praying for me. I have been blessed with so many prayer warriors who have taught me the joy praying for others, and it is my honor any time I am asked to pray for someone.

Until summer, I continue with immunotherapy infusions of Herceptin and Perjeta every three weeks to help prevent reoccurrence, and my oncologist monitors my heart since the infusions can cause heart problems.  I will also continue to take a daily oral aromatase inhibitor for the next five to ten years as another layer of precaution.  With the worst in my rearview mirror, I look forward to reconstructive surgery early this fall. Between cancer and a pandemic 2020 felt like a year of darkness. When I think of the alternate ending to my life story had I postponed my annual mammogram due to COVID fears last May, it overwhelms me, and I know I am blessed to be here.

With our new family member, Luca, which means “bringer of light” in Italian.
Celebrating my 25th anniversary

Angels Among Us

Once a month I am surrounded by angels. They come and go gently, quietly, speaking in hushed tones so not to disturb anyone who is resting. They touch my shoulder and ask if I want water, a snack, or a clean, warm blanket. They check my arm bracelet, ask how I feel, and smile affectionately as they do their routine tasks. I watch with curiosity as it distracts me from why I am there.

The woman to my left is distressed. Her vein collapsed and one angel tries to insert the medicine into it but cannot find a spot. The woman looks frightened, and her face betrays the fear she feels. Without warning, another angel joins the first, speaking calmly, reassuring the elderly patient all is well while taking the woman’s hand into hers. Then a third angel appears, working feverishly, while the other two support and reassure the unsettled woman. Finally, the second angel finds the vein and all four breathe a sigh of relief in the form of a cheer.  The angels quickly wrap her in a warm blanket to ease her stress and return periodically to ask her how she feels.

The woman to my right is quiet, taking it all in. She is new and just lost her hair. She has her head wrapped in a pink scarf, her feet placed strategically in ice to avoid the neuropathy caused by the medicine that saves lives but breaks down bodies. She talks to the lady across from us, the one whose hair just returned in short brown waves.  The woman with hair is proud of its texture, smoothing it lovingly with her hand as she shares her journey.

The last woman, a young working mother, sleeps soundly in a corner, swaddled in the customary warm blanket, somehow ignoring the beeping monitors around her. I admire her beauty, her youth, as mine has passed. She has a hint of dark hair on her head and no wrinkles around her eyes. I wonder how she can sleep through the alarms of beeping monitors but wonder if she enjoys a break from her children and work deadlines to rest her weary body.  I remember my panic at the start of my journey, sobbing the first time the angels injected me with medicine because I realized the threat I faced had I not gotten my latest mammogram. I pleaded for God to let me live to see my children marry and find passion in work. I can only imagine what it must feel like for the young mother. Did she beg God to let her see her children begin kindergarten, have a first date, graduate from high school?

My thoughts are interrupted by the woman I dread seeing. She is oldest of us and needs assistance as she settles into her chair. The angels bring her blankets and help her recline to a point that is comfortable for an aching body. She moans and they rush to soothe and quiet her like a mother rushes to her crying child in hopes of not waking her sleeping children. Two, sometimes, three, angels surround her to proctor the medicine and watch the monitor. I feel her journey may be shorter than the rest of us, and I begin to pray. I pray for her and then each one of us individually. I ask God to give us strength and comfort to heal our bodies and let us live another day. Then I pray for each angel I see. I can only imagine the weight they carry home each evening as they greet their own loved ones. I tell one of them, the angel assigned to me, that she is truly an angel, but she shrugs it off, saying she is nothing special. I know better. They are angels who choose to take on the burden of healing, comforting, and caregiving frightened souls.

An announcement interrupts my thoughts. One lady I have never seen is going to ring the bell, marking the end of her year-long infusions. Angels circle around her. Sick patients awaken and sit upright in reclined chairs. The lady rings her bell loudly, proud of the pain she conquered, relieved that this part of her long journey ended. “You saved me,” she announces as the angels clap excitedly.  I cry for the stranger I will never meet, feeling her joy as if it is my own.

A few moments later the lady leaves with her family, and the angels return to their duties: checking beeping monitors, reading charts, inserting medicine, and soothing the weary, broken souls they keep watch over day after day.

   
                     

Duke Women’s Cancer Care Center, Raleigh

* Dedicated to my mother, Myrna Harrison, the first of these angels to take care of me.

I Got You Babe

 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. 

Photos: (1) The 70’s Cher years (2) 1980’s hair (3) engaged, 1995 (4) family, 2018

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.  For mouth sores, I found I couldn’t eat anything like bread, crackers, or cereal on the bad days because they scratched my already burned mouth, so soup and a Duke prescription called “Magic Mouthwash,” 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.”