Mission Accomplished – 365 Days on Nerlynx

After surgery, chemotherapy, radiation, and reconstruction, for many HER2-positive breast cancer survivors, our next mission, should we choose to accept it, is to commit to a year of targeted immunotherapy, called Nerlynx. When I accepted the challenge, I decided to document my year on Nerlynx (neratinib) in hopes of helping fellow survivors trying to decide if they, too, should devote a year to this relatively new immunotherapy.

August, 2019 -before cancer
July, 2020 -chemotherapy
August, 2022- finishing Nerlynx

Who Should Consider Nerlynx

About 14% of all breast cancers today contain a protein identified as HER2+, and some cancer types can be like mine, “Triple Positive,” meaning Progesterone, Estrogen, and HER2+ fueled the cancer.

Typically, treatment includes surgery, chemotherapy, trastuzumab-based infusions (Herceptin), and radiation, followed by aromatase inhibitors to decrease the chance of recurrence. Additionally, in 2017 the FDA approved a drug, Nerlynx, which may also decrease recurrence by lowering the percentage of HER2+ cancer cells from binding in a woman’s body.

Nerlynx Research Statistics

In the ExteNET trial of 2840 patients, results showed invasive disease-free survival (iDFS) of 94.2% compared to iDFS of 91.9 in the placebo group. The five-year survival for Neratinib (Nerlynx) patients was 90.2 versus placebo (87.7%).

Patients with No PCR

More specifically, in the group of patients with no pathologic complete response (PCR) after chemotherapy (before surgery), the eight-year overall survival was 91.3% compared to 82.2%, making the drug a 9.1% benefit.

Patients with PCR

In patients with a pathologic complete response (PCR), the eight year overall survival was 93.3% with Neratinib compared with 73.7% with placebo, reflecting a 19.6% absolute benefit.

Committed to all I could to do to stay healthy, I pledged to take Nerlynx for a year. After all, after six hard chemotherapy treatments, 17 Herceptin infusions, radiation, and two major surgeries, I thought, “How difficult can six little pills be?”

The Wild Card: Nerlynx + IBS

No two breast cancer journeys are exactly alike, and I found the experience of taking Nerlynx to be no different. For instance, a friend of mine who also took Nerlynx warned me that the drug was not for the faint-hearted and that it took her body three months to adjust to the medication. After researching the side effects expected the first three months, diarrhea (possibly severe), nausea, abdominal pain, and fatigue, I still decided to take Nerlynx, not realizing that the side effects would remain a full year for me due to my past history of IBS.

Your Mission Should You Choose to Accept It

The Nerlynx biopharmaceutical company, Puma Biotechnology, advises patients to begin taking three tablets daily for a week, adding one extra tablet each week until reaching six tablets in three weeks, the dosage documented in their research. They say to take the medication with food, preferably in the morning, and to avoid grapefruit, antacids, alcohol, and multi-vitamins, especially calcium, for at least six hours after taking the medication since these items can make Nerlynx less effective. Puma Biotechnology’s researchers advise oncologists to prescribe Lomotil (because it is stronger than Imodium) to help patients manage the diarrhea while their bodies adjust to the medication. The representatives make it clear that taking Nerlynx is a personal decision to be made only after consulting one’s oncologist. However, they stand by their research claim that successful participants who took between three and six pills, six being their recommended dose, had a higher chance of survival versus those in placebo groups.

I’d like to point out that the dosage medication does not take into consideration the patient’s weight like other prescribed medications. Therefore, the same suggested dosage, six pills, is advised for a person weighing 125 lbs. as it is for a person weighing 225 lbs. I have shared this concern with Puma Biotechnology and hope they will consider tailoring the medication for each patient like most cancer-fighting drugs. I also asked them to consider studying patients with a history of IBS since I believe it plays a strong role in how the drug affects patients’ experiences. Puma Biotechnology currently has no research on patients with a history of IBS, so I hope this blog provides some incite for fellow survivors.

Aware of these guidelines, I first began Nerlynx in June, a month after ending Herceptin infusions. However, I was so sick with constant diarrhea that I stopped taking the drug after four days. I began it again in July, lasting about seven days on Nerlynx that time. I had been diagnosed with IBS (Irritable Bowel Syndrome) twenty years earlier but had not had an episode in over fifteen years. Unfortunately, I believe the medication, coupled with a tendency towards GI issues, caused the severe side effects of Nerlynx to be worse for me as opposed to someone with no prior history of IBS.

Third Time Is the Charm

In August, I decided time was running out since Nerlynx claims to be most effective taken within six months after completing Herceptin infusions, so I vowed to begin again and to commit to a year on the drug. I began Nerlynx on August 17, dealing with the usual diarrhea as before, but as I continued escalating the medication each week as advised by the drug’s representatives, the diarrhea got severe, and I burst a blood vessel in my bowel. As a result, I lost a lot of blood and had to take a steroid for a few weeks following the incident. I also added Budesonide, a different steroid typically used for Crohn’s disease, to my regimen of Lomotil and Imodium. On my third week, I visited the oncologist and was concerned that I had lost ten pounds and my red blood cell count was low due to the blood loss. Taking my oncologist’s advice, I reduced the medication to three tablets until my body could adapt to that dosage, which took three weeks. It took me from August until Thanksgiving to reach six tablets, and I highly suggest anyone with a history of IBS or Crohn’s disease ignore the manufacture’s general protocol of increasing a pill a week and, instead, increase the dosage whenever your body adapts to the medication, meaning whenever the diarrhea is controlled enough that you can maintain normal everyday activities.

To Each Her Own

People mean well, but when someone is diagnosed with cancer there is a lot of unsolicited advice, especially in regards to food. I’ve had well-meaning people suggest I avoid all sugar, gluten, preservatives, and tap water. Someone even urged me buy my own sauna if I wanted to beat cancer. Although people mean well, everyone’s cancer is different. For instance, mine is fueled by too much Estrogen, Progesterone, and HER2 protein in my body, so it is more complicated than simply going gluten free or vegan. I am told that there are a host of environmental factors most likely causing cancer today and that they could include everything from the ingredients in our toothpaste to the lotion on our skin; it is overwhelming and one can only do so much. Therefore, in order to survive a year of Nerlynx , I had to smile and ignore all the well-intended advice of others, especially regarding food, and eat what my body could digest: carbs, carbs, and more carbs, regardless of gluten or other preservatives. I began my day with bread and made sure I had bread with every meal to counter the impending diarrhea that came with eating. I followed the BRAT regimen closely (bananas, rice, applesauce, and toast) and avoided my triggers, which were caffeine, dairy, citrus, spicy foods, fried foods, alcohol, and desserts. From journaling my foods each day, I quickly discovered that the healthiest foods, such as salads, fruits, and fish, made the side effects worse, so I filled up on bread and crackers, bland foods to keep diarrhea down. Even with a constant carb intake, I was still losing weight because, although the side effects became manageable, they never ceased altogether for me when I was on the manufacturer’s recommended dosage. At Thanksgiving, when my plate consisted of a little turkey and a lot of rolls, a family member teased me, “What a diet. Eat bread. Still lose weight.” Unfortunately, there was truth to it. I was surviving on toast, crackers, and water for most of the year.

Dangers of Nerlynx

In addition to monitoring foods, the Nerlynx patient needs regular lab reports since the drug can affect liver function, so my oncologist monitored my labs carefully. Thankfully, my liver numbers never changed so drastically that I needed to stop the drug. Nevertheless, excessive diarrhea can decrease Potassium, a mineral needed for healthy heart function, so when a lab report indicated low Potassium, my doctor added a Potassium supplement to my regimen. I had been prescribed a Potassium supplement during chemotherapy, so I knew how hard the supplement was to ingest. The first time I tried swallowing the tablet, I almost choked because they are huge tablets. Next, I asked for the liquid form of Potassium, but its taste made me extremely nauseous. Finally, a pharmacist suggested I try the capsule form and break it open, mixing it with apple sauce. It has been the best solution for me, and I hope it helps someone else struggling to take Potassium, which is commonly prescribed for cancer patients.

The Mystery Rash

Thinking I had experienced all the Nerlynx symptoms, I was surprised one morning when I woke up to a rash over my nose and across my face. It looked like red fluid-filled bumps that I couldn’t identify. After a week I visited a dermatologist who tested the rash for MRSA, Staph, and Strep. Luckily, all tests were negative, but it was still a mystery to me and the dermatologist. It itched and burned a little at the same time. When I reached out to the CVS Specialty Pharmacy, the company who supplied me with Nerlynx and monitored me regularly, the pharmacist said he had heard complaints of rashes in 2/10 cases. He advised washing with Hibiclens (found at any drugstore) and using Eucrisa or over-the-counter Hydrocortisone cream. He also suggested adding a probiotic to my diet but at the end of the day so it did not interfere with the Nerlynx. In the end the rash spread to my eyelids, so it got frightening, but it never really hurt and was not contagious to family members, so I continued with the Nerlynx. Unfortunately, the rash came and went for the remainder of the year. The pharmacist also warned me that sun could cause the rash to flare up, and he was correct. My first beach trip in three years ended with a rash on both arms and legs, but at least I knew it was temporary.

Dry Eye Syndrome and Nerlynx

Like so many Americans, I was diagnosed with Blepharitis about ten years ago. Basically, I have clogged oil glands in the eyes causing dry eyes. Since the Blepharitis diagnosis, I have taken high doses of Fish Oil, prescription eye drops, and used moist eye compresses to decrease dry eye symptoms. With Nerlynx, a typical day meant taking four Lomotil pills to control diarrhea, which is equivalent to eight Imodium pills. Unfortunately, controlling diarrhea also meant drying out my oil glands as well. To make matters worse, the heat compresses suggested to open oil glands made the rash worsen on my eyelids. At one point I developed a chalazion, blocked oil gland, and had to have an eye specialist complete an in-office procedure to unclog it, which left me with a painful black eye for a week. It was a vicious cycle, but I reminded myself frequently that it was only for a year, and I tried to focus on the step before me and not the staircase.

Walking a Tightrope

By May, I had lost fifteen pounds and felt exhausted all the time. Unfortunately, the side effects of Nerlynx never slowed for me even eight months into taking the drug. My days consisted of decreased appetite and several bouts of severe diarrhea, sometimes with very little warning, causing me to wash my soiled clothes all day long. I was grateful that I could work from home and rarely left the house for fear of the consequences. For the first time in my life I dreamed of salads and fruit instead of desserts or breads. Agonizing over how to maintain my committed year yet still have some quality of life, I finally decided to decrease the medication from six pills a day to four. After all, I only had three months left. Within a week I was able to have a little fruit or a cooked vegetable, and within a month I could eat a whole salad or a portion of fruit. By July with only a month to go, I could treat myself to a frozen yogurt bar in the evening when most of the four pills was out of my system. Alcohol, unfortunately, never got easy, but I made sure it was only on special occasions. For the remainder of the time, I stayed on the Budesonide since it contained an anti-diarrhea ingredient and often still took Lomotil, but I could eat more foods and leave the house with more confidence. With four pills, I finally found balance on Nerlynx.

Doing It All Over Again?

Some survivors finish chemo and never take Nerlynx at all. At times I wish I could be more like that but I am built differently. I am a person who must do everything offered to me so that I don’t have to live wondering if I could have done more to remain healthy. While Neralynx was a beast for me, it is not the case for everyone. My recent body scan showed that I have been cancer free for two years, which I am celebrating. Three years will be a huge milestone for me, and five years is considered “graduated” in the medical community. I have concluded that I would do it all over again but instead of taking the full dose, I would remain on four pills in order to have a better quality of life. Although Nerlynx was a difficult mission, I am at peace having completed the recommended 365 days on the medication. If I have gained any wisdom from going through cancer, it is that peace of mind is a beautiful place to dwell.

“You were given this life because you are strong enough to live it “

Ain Eineziz

This blog is dedicated to Joanna Rose, my fellow cancer researcher, survivor, prayer warrior, and dear friend.

A Beautiful Moment

(below: the Tree of Life painting filled with survivors’ signatures located at Duke Women’s Cancer Center Macon Pond)

When my children were young our family spent a great deal of time playing in the back yard and relaxing on the porch swing. One of these lazy afternoons when I decided it was time for the children to go inside and complete some procrastinated chores, my youngest tried to sway my decision to let her stay out longer by saying she was trying to have “a beautiful moment.” Although her tactic didn’t get them out of chores, it did create a phrase commonly used in our family from then on. “A beautiful moment” became code family language for “that one perfect moment when all is well with the world.” Through the years when we were surrounded by loved ones blowing out birthday candles or if we were exhausted at the end of a long, hard day and heard our children laughing upstairs, I would whisper to my husband, “Shh. Listen. It’s a beautiful moment.”

Ringing the Bell

Celebrating “a beautiful moment” doesn’t mean life is without conflict. On the contrary, this mindfulness can come in the midst of a great battle to mark a time of peace and celebration. For instance, our family, like countless others facing cancer, had a monumental day we will never forget when I finished 17 Herceptin infusions and rang the treatment completion bell at Duke Women’s Cancer Center. Thankfully, I am not alone with this milestone. According to The American Cancer Society, 85% of those diagnosed with Breast Cancer in 2022 will survive and reach the cancer completion bell due to early detection and treatments options.

(below: Surrounded by chemo nurses as I completed my 17th infusion and rang the bell May, 2021)

My First Cancerversary

Soon after ringing the cancer bell, I celebrated my cancerversary, which is the date that cancer survivors consider themselves cancer free. My cancerversary is June 2, the date that I had a double mastectomy removing all cancer from my body. While survivors all celebrate a cancerversary differently, it was cathartic for me on my first cancerversary to spring clean my medicine cabinet, tossing out empty medicine bottles that I had used to manage the adverse effects of chemotherapy. I also marked the achievement by donating the scarves that had covered my bald head to my cancer center for fellow patients who might need them. In fact, some of the scarves I donated were given to me by friends of friends who I have never even met because when breast cancer survivors hear about a new diagnosis they feel a kindred connection, often reaching out to help one another cope with the life-changing diagnosis. It felt like I was channeling some strength from these brave women who had walked the same path before me.

Port-A-Cath Removal

Like many people I have always been squeamish about needles in general, so one of my many fears about breast cancer was whether infusions would be painful. I pictured nurses struggling to find a vein in my arm, and I couldn’t imagine sitting with a needle in my arm for hours. Thankfully, administering chemo treatment has advanced greatly with the invention of the port-a cath. A port-a-cath, or chemo port as many refer to it, is a small plastic device inserted just below the skin that connects to a major vein so that health care workers can draw blood and administer infusions easily and painlessly. It truly makes the experience so much easier because patients put a little numbing cream on the area of skin an hour before the doctor’s appointment and honestly feel no pain during infusion. I highly advise it for anyone anticipating several treatments like I had. At the end of treatment, the port-a-cath is removed during out-patient surgery and a tiny scar is left behind as a badge of courage.

A Little Body Fat and Some Silicone

After a year of having hard plastic expanders in my chest, another “beautiful moment” on my cancer journey came when it was time to exchange extenders for implants during reconstructive surgery. For months my plastic surgeon used extenders to expand my chest area until I reached my previous breast size. Luckily, I did not find the expansion particularly painful although my right breast, which had undergone three previous lumpectomies and sixteen radiation treatments, was sorer than the left side since it had been stretched more during the process.

Breast reconstructive surgery involves a great deal of research and decision-making. Unlike breast enhancement surgery, reconstruction requires creating breasts from scratch since there is a bare chest cavity with no fat, muscle, nerves, or often nipples. The patient chooses either saline or silicone implants, and many women today choose to add fat grafting around the implants so that implants have a more natural shape. One method, known as the DIEP Flap, takes fat from the abdomen or thighs and transfers it to the breast so that the patient gets a tummy tuck along with breast reconstruction. It is a serious procedure, and patients are in the ICU for a few days before going home to a healing process that lasts for months. Although I’ve heard many success stories about the DIEP Flap, I wanted the fastest healing process, so I chose implants with fat grafting. As a result, the basis of my breasts are implants, but the surgeon used liposuction from my sides and hips to transfer fat to the breast area for contour. It is miraculous what surgeons can do today.

My only advice is if the patient has a low Neutrophil count, there is an infusion that boosts leukocytes (white blood cells) to safeguard patients from infections which can develop during and post surgery. Unfortunately, the oncologist must advocate for the infusion, which I found when my oncologist and my cancer center had to call the insurance three times to request it, but it made all the difference in successful healing after surgery.

(below, nurses comforting me before reconstructive surgery since my husband could not be there due to COVID-19 restrictions)

Never Say “Never”

I never planned to have liposuction, breast enhancement surgery, or even a tattoo. However, as the saying goes, “Never say never,” because this year I received all three as part of my reconstruction process. The photo below shows where the surgeon used liposuction for fat grafting. The binder in the photo was worn continuously for six weeks, and I had to sleep on my back until cleared by my surgeon to sleep on my side again. I found a u-shaped full body maternity pillow very helpful to keep me in place while still cushioning my bruised sides so I could rest better. Overall, it takes approximately three months before all the bruising and swelling dissipate, but for most survivors there is little complaining because it feels more natural having saline or silicone in the breast area rather than hard plastic expanders.

Unfortunately, survivors who undergo radiation during cancer treatment can have more complications recovering from reconstructive surgery. I had sixteen radiation treatments which caused the radiated breast to heal differently from the non-radiated breast. For instance, a radiated breast is more likely to absorb fat from the grafting process, making it a little smaller than the other breast. The radiated breast can also develop capsular contracture, which causes painful tightness and difficulty moving the arm. As a result, some patients request further surgeries to relieve the pain and tightness. Although I developed capsular contracture, I am hoping the physical therapy I am doing will alleviate the tightness, Lymphedema, and flexibility on my right breast and arm. So far it is helping, so I am hopeful and marvel at the scientific advancements that allowed me a full, successful reconstruction.

A Spring Break Tattoo

Each step of the reconstruction process, like the cancer journey itself, is unique for each patient. For instance, after cancer treatment some patients decide against breast reconstruction completely, while others like me jump right into the reconstruction process. Therefore, no two journeys are exactly alike even for survivors with the same diagnosis.

During chemotherapy, I read, Pretty Sick, by Caitlin Kernan, a beauty editor who became a breast cancer survivor, and it made quite an impression on me. It introduced me to Vinnie Myers, and I researched the 3D tattoos he creates to help women look more like they did before mastectomies. Having received national acclaim on the Today Show, The Washington Post, The New York Times, among numerous other media outlets, Vinnie only creates 3D nipple tattoos and estimates to have completed approximately 13,000 3D tattoos for breast cancer survivors. Although not covered by insurance, I dreamed of having him complete the finishing touch because his work looked incredibly realistic, so I decided the $800 for two tattoos was worth the money.

After a little planning and waiting six months after reconstructive surgery, which is the time it takes to heal before a tattoo, I headed to Baltimore on my spring break for a weekend away with my husband, ending in two spring break tattoos at Vinnie’s Finksburg location.

Since it was my first tattoo, I wasn’t sure what to expect, and there is no consultation in advance. However, I the map on his office wall for patients to pinpoint their homes displayed that patients had traveled from every US state as well as every continent, which gave me confidence to relax and let Vinnie do his magic. The procedure itself, which took about an hour, was sensitive at times although many survivors claim to have no sensitivity at all. While he worked, matching ink colors to my skin tone, he entertained my husband and I with stories of the Grateful Dead and other celebrities he has known through the years. Afterwards, It felt like I had completed the final step in helping me feel healed, whole, and feminine again.

Body Dysmorphia is finally becoming a hot topic in the medical community for a good reason. Breast cancer survivors often lose body parts that they never imagined having removed, making many of them feel unattractive or incomplete afterwards. For many survivors the reconstructive surgery itself provides a feeling of closure, but for me it did not come until I completed the tattooing. Although my mastectomy scars remain, I no longer see them when I look at myself. Instead, I see the incredibly realistic tattoos, and I cannot emphasize how healing it has been for me. I fully understand that my choices are not for everyone, but I wanted to share my experience for any fellow survivor interested in this post-reconstruction option. I was always a woman despite having a mastectomy, but now I feel more like the person I was prior to my cancer experience.

The Road to Peace

Despite these beautiful moments and my grateful remission status, I still have periods of darkness when my anxiety feels overwhelming. For example, when a fellow survivor has a recurrence, my own fears flood back. Doctor appointments still give me PTSD as well, and any time I need a body scan I am restless until I receive good results. I also worry about every herb I take. For instance, I am a triple positive (ER+, PR+, HER2+) breast cancer survivor, meaning hormones rather than food or environment fueled my type of cancer, so while hormone replacement is popular today, I do the opposite and take aromatase inhibitors. Herbs and vitamins must also be monitored carefully, which can be challenging. For instance, I took collagen to help my hair grow and to strengthen my joints after chemotherapy but recently found research suggesting triple positive survivors might need to avoid it. Likewise, I took a multi-vitamin that I just discovered contained herbs that may accelerate female hormones. At present, I am seeking advice from my Duke support team to determine what vitamins and herbs are safe for me. Thankfully, I also have a support group led by Jen Hoverstad, a survivor and motivational speaker, and a dear friend, Joanna Rose, who has the same diagnosis as I do, so we help each other navigate these murky waters.

Although cancer survivors are living much longer lives, patients still need essential treatments and cures for so many types of cancer. If science can create a COVID-19 vaccine within months, I know we could could cure cancer with the necessary funding and urgency. At a time when many are cheering on Elon Musk’s SpaceX, I am frustrated, thinking what the cost of a 55 million dollar joyride to outer space could do for cancer research. My hope is that one day cancer treatment will become an urgent global research priority like the COVID vaccine was and that treatments like chemotherapy will be considered as outdated as a lobotomies.

Ironically, I never felt sick until I went through cancer, but at least this experience has made me appreciate each day to the fullest. Since cancer, I am trying to redirect my mindset to become as positive as I can for my own mental and physical wellbeing. It is essential for each survivor to find a beacon through the darkness, whether it be counseling, medication, meditation, or prayer.

Until we reach a cure, I hold firmly to a scripture I ran across one sleepless night: Hebrews 11:1: ” Faith is the confidence in what we hope for, the assurance in what we cannot see.” I literally recite this verse every day as my mantra. My hope for a cancer cure remains strong, but until then I, like my fellow survivors, continue to celebrate life’s beautiful moments, whether they be great or whether they be small.

*Opinions in this blog are my own.

“A Beautiful Moment” is dedicated to Cullen, Michael, and Elizabeth for giving me the most beautiful moments of my life.

Hair Growth Post Chemotherapy

I never thought I’d go through cancer… and I never thought I’d be bald. Yet, here I am. Although my previous blogs have been written for the general public, this blog is written for cancer survivors. Each of our journeys is different. Many of you will choose to do the Cold Cap Therapy to retain hair, which I hear is very successful. I did not , so this blog is to help anyone undergoing chemotherapy with the anticipation of great hair loss.

When I knew I would be completely bald due to chemotherapy, I began surfing the internet for images of how my hair would look once it began growing back and found there weren’t many posts on this topic for anxious cancer patients. I hope by documenting my journey I can provide honest encouragement for someone else undergoing hair loss as a result of cancer treatment.

When Will I Be Bald?

After my 2nd chemo treatment my hair starting falling out at the slightest touch, and I was unable to brush or wash it without losing handfuls of hair. I realized that before my next treatment my hair would all fall out on its own, or I could take control and shave it off myself. It was an emotional but powerful decision taking the step to do it myself, but it was the right decision for me. Because I felt so much of my life was already out of my hands, it was satisfying to have power over at least one area of my life. You can see in the photo that I still had eyebrows and eye lashes until my 6th treatment.

(photo below: June 2020)

Chemo Ended. Now What Should I Expect?

After my 6th chemotherapy treatment, I officially ended “hard” chemo, and hair, appetite, and energy slowly began to return. I noticed after the 6th treatment that I had a rosy flush to my cheeks. Most of my eyebrows and eye lashes had fallen out, and I only had a few remaining. Around the third treatment I began applying Latisse’s generic version, Bimatoprost, to my eyebrows. (I have dry eyes or I would have used it on the eyelashes as well). It retails for $250, but GoodRX offers it for $60. I learned to put a drop in the bottle’s cap and rub the applicator brush around the cap to avoid wasting any product. As a result, I only had to refill it every six to eight weeks instead of every three as directed. It should be noted that I did not use Cold Cap Therapy to keep my hair but have heard positive reviews from friends who have used and would recommend it.

(photos below: Oct. 2020)

1st Month after Chemotherapy:

A month after treatment I began to see soft, downy hair sprout and was very excited. My eyebrows took a bit longer to rebound, but I continued using the Bimatoprost for a few months and just enjoyed watching my hair come back to life. I am in my 50’s and have colored it for years, so it was no surprise that my hair returned in salt and pepper shades.

(photos below: Nov. 2020)

2nd Month after Chemotherapy:

Slowly, my hair got stronger each month, and I was careful to use products like Nioxin 2 Cleanser Shampoo for thinning hair. I also used a hair scalp massager ($6.99 Amazon) in the shower to stimulate the scalp and massaged Biotin serum and castor oil on it to keep follicles hydrated. I wore hats and mineral sunscreen to protect my scalp from sunburn so that it could stay healthy.

(Photo below: Dec, 2020)

3rd Month after Chemotherapy:

It is important for cancer patients to have a trusted hair stylist who is knowledgeable about how to help hair grow without damaging it. My stylist (and friend) is Royce Pizzo, one of the co-owners of J & F Gemelli in Cary. I’ve been a client of hers for years, so we have a great relationship. She not only knows my hair’s needs but is well-educated on hair growth from having had previous clients who have undergone chemotherapy. For instance, I wanted to color my hair as soon as possible so I would look more like I had before treatment, but Royce urged me to wait until the fourth month, which was the right decision. She encouraged me to keep using the Nioxin and refrain from heat and sulfates, many of which are in over-the-counter hair color products and shampoos. Sometimes I made a mixture of rosemary, lavender, and almond oil for a hair mask. I tried to stick with natural products as much as possible. With chemotherapy behind me, I slept and ate better, which contributes to overall health as well.

(Below: Jan. 2021)

4th Month after Chemotherapy:

The decision of what to do with hair after chemotherapy is as individualized as the survivors themselves, meaning it should be whatever makes the survivor feel good again. While many choose to celebrate the gray hair which often returns after immunotherapy, I chose to return to the hairstyle I had before cancer. Therefore, once my stylist felt my strands were strong enough for color, she used a very gentle salon color so that the ingredients wouldn’t be harsh. She colored it a little at a time, testing sections to be safe. My texture was mostly straight like before but much softer than it had ever been, and she said it would become coarser like before once more layers of hair returned.

(Below: Feb., ’21)

5th Month after Chemotherapy:

I was impatient but excited about hair regrowth once I started seeing a full head of hair. My stylist suggested I start a collagen regimen to nourish hair growth from within, so I researched and selected Vital Proteins Collagen Peptides supplement, which retails for $25 a month. It contains collagen, Vitamin C, and Hyaluronic Acid. There are many on the market, but I chose this one because it was an unflavored, grass-fed powder that dissolved easily into my morning coffee. (Please note: I have since read that collagen is a gray area for Triple-Positive survivors, so I would not use the supplement if I could do it again. I believe it is fine for survivors whose cancer was not fueled by estrogen or progesterone. It is, however, an excellent product).

(Photo: March, ’21)

6th Month after Chemotherapy:

For some reason, between months five and six my hair’s texture became especially wavy and didn’t resemble the hair I had before cancer nor anything I had seen as it returned. In order to feel more like myself, I wanted to straighten it, so my stylist applied a Keratin treatment. We chose Keratin because it was milder than a straightener but still relaxed the strands. (Like in the old days of perms, it’s ideal not to wash hair for three days after a Keratin treatment in order to get the best results). I continued with the collagen supplement and vitamins to help hair grow stronger and really felt it helped speed growth along. I also added Brazilian Blowout Ionic Bonding Spray to my hair after shampooing since it worked well with Keratin. My first haircut in over a year was exciting, and I loved my first pixie cut, which took place in April.

(Below, April ’21)

7th Month after Chemotherapy:

The crown, sides, and back of my hair grew fast, but the front was very slow to return since it is typically the last layer to fully return. Patience is hard but important at this point in the hair growth process.

By now I had a plan: I received a trim and Keratin treatment every other appointment, which was every six weeks, but to make me feel good, my stylist would color it every three weeks. Luckily, my texture was now very similar to what it had been before chemotherapy except in two areas; on each side around the ears the underlying layers of hair were tight curls, unruly, and unlike the rest of my hair’s soft wavy texture. I was assured that this was normal for chemo patients and that sometimes these patches showed up in odd places on the scalp. Like most cancer patients, I was so much more grateful to see hair return than I was upset that some patches of it were frizzy. It was part of the journey, and I knew it wouldn’t last forever.

(Below, May ’21)

8th Month after Chemotherapy:

By the eighth month I had enough hair to switch to Kerastase shampoo and conditioner, along with a few drops of Kerastase Blond Absolu oil to nourish and neutralize brassiness. I was thrilled once I could wrap a round brush around my strands for a blowout and add a straightening tool to my routine. Some areas continued to grow faster than others, and at times I was impatient for the front to fully return. To avoid having a mullet, we kept my hair short because hair on the crown was still only a few inches long. I continued wearing pixies since they seemed like the best option, and I remember the first time I received a compliment on my “short, sassy cut” from a stranger who had no idea my hair was returning from cancer treatment. It felt amazing to blend in with society!

(Below: June ’21)

9th Month after Chemotherapy:

Although still only a few inches long, the crown and back of the head had grown as thick as before chemotherapy, and I was relieved. However, there was a section in the very back of my head that now grew into dense, tight curls so my stylist texturized that area to make styling hair more manageable. (The photos below show the before/after so you can see the mullet she shaped into a pixie). The tight patches on the sides became looser, but I continued having salon Keratin treatments every six weeks to make the tight, curly patches relaxed and easier to style.

(Below: July, ’21)

10th Month after Chemotherapy:

I remember reading that hair grows a half-inch each month, which is true but it does not all grow the same speed at the same time, so while the fullness returned to the back, the front remained short bangs that I swept to the side so they looked more stylish. Big earrings became my best friend, and I especially loved simple, large hoops.

(Below: August, ’21)

11th Month After Chemotherapy:

For some reason at this point in my growth cycle, my scalp became extremely irritated and itchy. It was as if my nerve endings became hyper sensitive. Thankfully, my stylist did a cooling, moisturizing treatment that helped, and she suggested Oribe’s Serene Scalp Soothing Leave-On Treatment, which I applied before blow drying. I also rubbed peppermint oil and rosemary into my scalp at times to soothe the scalp. About a month or two later the itching went away, and I never figured out if it was my a side effect of my immunotherapy medications or stress, but I was relieved that it was over.

(Below: September ’21)

12th Month after Chemotherapy:

This month the layer of hair that grew close to my forehead finally started growing, which meant that my bangs finally became fuller. My stylist explained that it was always the last layer to return. It was nice to have full bangs and to start seeing them grow longer as well.

(Below: Oct., ’21)

13th Month after Chemotherapy:

I continued with my flapper-style pixie and was thrilled at how full my hair was. I remained on the collagen supplement and continued my routine of alternating haircuts with Keratin treatments. Seeing hair return felt like a return to good health, and I must admit I really enjoyed having short hair at this stage.

(Below: Nov., ’21)

14th Month after Chemotherapy:

For someone who had always worn long hair, I have to admit this stage of the hair growth journey was definitely fun. To run errands and look like everyone else is a luxury I had taken for granted before chemotherapy. I plan to let hair grow longer so it is similar to how I looked before chemotherapy but may one day return to this style because it was so carefree.

(Below: Dec., ’21)

There’s something psychologically healing about seeing hair grow that makes a cancer survivor feel stronger and healthier. It definitely takes patience, but it is such a rewarding feeling when hair returns after cancer treatment. My shortest layer is about six inches at this point, so it will take time to have shoulder-length hair again, but I am definitely having fun watching the monthly hairstyle changes along the way. I am incredibly grateful for my support system and look forward to the next stage of hair growth when I am able to rock an angled bob 🙂

This blog is dedicated to my dear friend and stylist, Royce, of J & F Gemelli.

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

(Those of us undergoing surgery and cancer treatment during the first year of COVID-19 were not allowed to have any family members at our side. We were dropped off and picked up at curbside. However, we were not completely alone due to the amazing healthcare professionals we had to support us. This is dedicated to those courageous nurses)

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.  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.”

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/

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