Side effects from the treatment were the hardest parts for me. The sensations caused by the tumor and treatment included neuropathy, double vision, fatigue from morning to night, disorientation, fear, and inability to think positively. –MF
Medical advances over the years have allowed many to heal, feel less pain, and manage symptoms. Treatment can be beneficial, but it can also create side effects that further complicate our journey. How your brain and body respond to treatment can increase the trauma of this journey. We’ll look at “chemo brain,” hair loss, fatigue, eating, digestive health, and more.
Chemo Brain
Chemo brain. That term frustrates me to no end. In conversation with someone, I struggle to find the word I want to no avail, so I quickly apologize to the listener. “Don’t worry. It’s just chemo brain,” comes the response. Don’t worry? Are you kidding me? With everything else — bald head, reduced energy, massive life changes and now this! Don’t worry? Well, I am worried. I don’t like not being able to think and remember like I used to. I hate it. –CS
We brace ourselves for the physical impact of our treatment, but we are often unprepared for the neurological and emotional results of treatment and the accompanying stress, such as chemo brain. Which side effects come from chemo and which from illness and stress are uncertain. Some medical personnel reject the idea of chemo brain, while others recognize the impact is real.
Todd Horowitz is a leading researcher at the National Cancer Institute. He shares some of his thoughts about chemo brain in an article about his work in Cancer Today magazine.[1] Dr. Horowitz explains that the technical term for what we refer to as chemo brain is cancer-related cognitive impairment, or CRCI. Researchers report that CRCI is more complicated than just the impact chemotherapy has on the brain. CRCI seems to affect many cancer patients even before they receive chemotherapy, regardless of the type of chemotherapy they get. Some patients treated for cancer don’t get CRCI symptoms. Horowitz supports what many of us understand: that a medical crisis itself is stressful, and the stress and trauma of the journey affects our ability to concentrate and remember things. Understanding that the stress and trauma of a medical crisis significantly contribute to “chemo brain” explains why some of our loved ones, and even those patients who have not received chemo, experience similar symptoms.
Typical “chemo brain” symptoms include:
- Forgetting things that are usually easily remembered
- Trouble concentrating (can’t focus, short attention span, may “space out”)
- Trouble remembering details, names, dates, and sometimes larger events
- Trouble multi-tasking (talking on the phone while cooking and not losing track of either)
- Taking longer to finish things (disorganized, slower thinking and processing)
- Word-finding difficulty (unable to find the right words to finish a sentence)
When we complain to friends about this, many comment they experience it, too, and that it is just a part of aging. However, we know the difference. We search longer for words and ideas than we did a few months ago. We make mistakes we rarely would. We search for the ability to concentrate on work, even when doing something simple.
Medications for physical issues have a definite impact on mental processing and stability. –GM
Even though I was cleared to drive, the weakness and mental fog made me unstable and unsafe to drive. –BK
As a child, I was diagnosed with Auditory Processing Disorder. This makes it difficult for me to find what words I want when I’m talking. Add that to the impact on my brain from the accident, and I struggle to communicate. –CK
Cindy’s Journey Oh, My Brain
I wasn’t a top student; that was my sister, Debbie. She was (and is) the “brain” in our family. She loves to learn, read, and study. One summer, when she was about 12 years old, she sat at the top of our steps and read the encyclopedia, from A to Z. Admiring her so, I pulled out the A volume, and after reading the entry on abacus, I knew that pathway of acquiring knowledge wasn’t for me. And so it was set: in our family, Debbie is the smart one.
One subject I did enjoy and excel at throughout elementary school was spelling. I know, it’s not a lofty or conceptual skill, but I liked spelling tests. I always knew what would be on the tests, so I could easily prepare. Monday pretests were my victory. Correctly spelling all the words on the pretest led to being exempt from weekly spelling assignments and the Friday test. More importantly, it meant being included in special assignments. Such special assignments involved making large maps of the different continents and their countries. South America was my favorite. Drawing maps and labeling countries, capitals, and geographic features were not only enjoyable, but I learned more from making those maps than I would from the weekly spelling grind.
It’s been decades since I have taken a spelling test, but it has remained a natural strength for me — until now. Today, I sent out an email to colleagues. In it, I made two spelling errors I didn’t catch, even though I read over the email before I sent it. One error was a homophone; I wrote whole and meant hole. The other word was hearsay and I wrote heresy; sure, lots of the same letters, but wrong. One of the colleagues pointed it out and blamed it on autocorrect. I should have let it go at that, but my angst and embarrassment at making such a public mistake propelled me to call it what it was: chemo brain.
I hate it. My brain gets foggy. I mix up my words. I forget things that sit in the back of my mind typically ripe for recall. I know when I am not thinking clearly, and my concentration feels layered with a blanket of haze.
Although I’m not “the smart one” in our family, I really like my brain. It helps define who I am and has allowed me to be successful. Now, it’s different. It is said that chemo brain is temporary, but meanwhile, what do I do? What can I do to reignite my thinking? I don’t have the answers to the questions. I am left with frustration and self-doubt.
Losing Hair
There are studies that show that for many women, losing their hair is worse than losing a breast. That’s because you can conceal the loss of a breast, but hair loss is so obvious and apparent. –Marisa Weiss, M.D., Chief Medical Officer, Breastcancer.org
Losing one’s hair due to treatment is often one of the most challenging aspects of treatment. It is an outward sign to the world, letting it know what is going on within your body. For many, losing hair spikes a privacy issue.
Bald Grandma drawn by granddaughter ARG
Radiation causes hair loss on the part of the body treated because hair follicles are very sensitive to radiation. Most notice hair loss at the treatment area about three weeks after the start of radiation. Radiation to the brain, often used to treat metastatic brain cancer, usually causes complete hair loss on the head.
Chemotherapy is designed to destroy cancer cells that are rapidly dividing. Chemo doesn’t know the difference between cancer cells and healthy normal cells, so during chemo, some healthy cells are destroyed, causing side effects. The healthy cells most frequently affected are those cells that also quickly divide. These cells include blood cells, skin cells, cells in the mouth, stomach, bowel — and hair follicles.
Hair follicles are some of the fastest-growing cells in the body. Under normal, healthy conditions, hair follicles divide every 23 to 72 hours. As chemo targets rapidly-dividing cancer cells, it also destroys those quickly-dividing hair cells.
Hair loss can be gradual or dramatic. It’s not unusual to find clumps of hair in the sink, in a brush, or on a pillow. Hair loss isn’t restricted to hair on the head; some chemo treatments cause the loss of eyebrows, eyelashes, pubic hair, and hair on legs, arms, and underarms. My 80-year-old father-in-law told me he had lost his hair everywhere. In a dejected tone he said, “It makes me feel like a young boy and not in a good way.”
Even knowing we will lose our hair; it is often startling when it occurs. To help adjust to the change, some suggest purchasing a wig before your natural hair falls out, so the stylist can match your hair color and style. My nurses recommended I get my shoulder-length hair cut into a shorter style to get used to a change before the ultimate hair loss was thrust upon me. I did. Then, when I was in the hospital and I knew total hair loss was imminent, a nurse offered to shave it off before it completely fell out. I took her up on it.
Some women and men go to hair salons and ask to be seen in a private room to have their hair shaved off. Others hold a party and have their friends and loved ones participate in shaving off their hair.
When my hair started to grow back, some asked how long it too. It took four months for a fuzz to appear. It took longer for my hair to grow than usual. As, like for many, my hair grew in curly. For some, their hair color also changes.
Losing my hair was horrible for me personally — actually harder than the diagnosis of leukemia. –LL
I worried about losing my hair. I didn’t want people at work to know what I was going through, and being a man, I couldn’t wear a wig. –MS
Months ago, when I thought about losing my hair, I was distressed, as a bald head often serves as evidence of cancer treatment. I thought I might be that one in a million who doesn’t lose their hair from these specific drugs, but the truth was revealed as long hairs decorated my pillow. While my hair is slow-growing and patchy, I’ve come to appreciate my bald head. It reminds me of the healing that still needs to take place. –CS
I was so angry about losing my hair. Then it returned snow white, not gray! –KM
Cindy’s Journey Wig, Hat, or Bald?
Dealing with a bald head is new territory for me. YouTube videos on how to tie colorful scarves into a stylish look end up being less than stylish on me. Winter hats are itchy. My husband’s sports team’s hats don’t match my outfits, which for some reason matters to me. So I order ten, yes ten, Vineyard Vines™ baseball-style hats in different colors. The fabric is comfortable, and the shape of the women’s hats fit nicely around my shiny scalp. If you aren’t familiar with Vineyard Vines, their smiling whale logo is found on their apparel. The “whale” hats are my go-to when I don’t want to bother with my wig.
But now, I stand in front of my open suitcase wondering what to pack for a trip to New York City to see our son and his family and to attend the musical Dear Evan Hansen on Sunday. My Vineyard Vines hats will be just fine when seeing our son, but after the play, we’ll see a group of our friends for the ride back to Maryland.
A debate swirls in my head.
I should wear my wig. Ugh, it’s going to be hot, and the wig makes my scalp sweaty and itchy. But it looks like your real hair. If I wear or take my wig up to NYC, I must pack the Styrofoam head it sits on. It would be so much easier to go wigless. I don’t want to shock my friends. They haven’t seen me since I lost my hair. They won’t care.
The volleying back and forth continues until comfort and ease finally win out. I am going without hair, scarves, hats, and wigs. I tuck my vulnerability down and call upon my courage.
Sitting in the theater, knowing I will soon see my friends, my anxiety begins to rise. Just as my self-consciousness is about to take a firmer grip, I am thrust into riveting scenes unfolding on stage. The play portrays adolescent angst and more, yet an undertone is the desire to be seen. The irony is not lost on me. Well, be seen, seen without hair.
As we walk to meet our friends, I realize for the casual passer-by, seeing someone without hair is just that: someone without hair. But for me, being bald symbolizes the journey that is taking me on twists and turns, worries and fears, illness and pain. The outward symbol of hair loss is proof that an unwanted guest has struck my body. Hair or no hair, wig, hat, or scarf shows the world, and more importantly shows me, that my life has changed.
Oh, by the way, the play was fantastic.
Fatigue and Sleep
A bone weariness consumes me. It is definitely one of the most severe and long-lasting of all side effects. –CS
According to Sleep Advisor.org, in January 2020, falling asleep should take between 10-15 minutes. In the U.S., 50 to 70 million people suffer from one or several sleep disorders; 30% of U.S. adults suffer from insomnia, and 10% from chronic insomnia.[2]
Sleep difficulties and cardiovascular disease (CVD) illustrate the relationship between sleep and health. Poor sleep quality contributes to CVD, and CVD may interrupt sleep.[3]
The National Cancer Institute reports that as many as half the patients with cancer have problems sleeping due to insomnia and an abnormal sleep-wake cycle.[4]
Dr. Merrill Mitler, a sleep expert and neuroscientist at the National Institutes of Health (NIH), explains that sleep serves all aspects of our body in one way or another, including energy, intellectual function, alertness, and mood.[5]
Sleep promotes clear thinking, quick reflexes, and strong focus. When we sleep, the brain cortex interprets and organizes the information we gather when we are awake. Not getting enough sleep leads to difficulty making decisions and solving problems because our brains haven’t had the time during sleep to organize all that we experience.
Dr. Michael Twery, a sleep expert at NIH, comments that a lack of sleep “… affects growth and stress hormones, our immune system, appetite, breathing, blood pressure and cardiovascular health.”[6] During sleep, our bodies release hormones that help repair cells — a process of paramount importance during medical recovery.
Similarly, sleep is essential to our memory. During sleep, our brains take what we experience during the day and route it to a different part of the brain, which stores it. This long-term memory bank allows us to recall the information and use it later. If your mother told you that you needed a good sleep for learning, she was right!
There were constant physiological issues: fatigue, nausea, body aches. –JN
The hardest part of my experience was having the bad days when my energy level wasn’t high enough to function. That was not me before; now I must go as my body lets me go. –SJ
Cindy’s Journey I’m Not a Napper
I feel for those who have chronic sleep issues. It is so frustrating to lie in bed tossing and turning, counting sheep, wearing a sleep mask, or listening to calming music only to still be awake.
For me, falling asleep is easy. Okay, okay, to be completely transparent, I take a small dose of prescribed Ambien every night. Yet, no matter how long I sleep, I combat a level of fatigue during the day. I haven’t found a good word or phrase for this type of tiredness. Fatigue and tired just don’t capture the depths of what I feel. Bone weary is the best I can come up with. The fatigue is all-encompassing; it consumes me. It zaps my physical and mental energy.
Those who love me tell me I should nap. I am not a napper by nature. I like to do and move. But, by 1:00, I feel like a plug has been pulled and all my energy leaves me. And so, I take to my bed.
Lying on my bed under a comfy quilt, I flick on HGTV to watch a family’s search for a larger home for their growing family or marvel over the Property Brothers’ inspiration to makeover an old home. But, just as the families are choosing paint colors and kitchen flooring, I turn it off. I just don’t have enough energy to finish the house renovations with them. And I close my eyes, turn on my meditation app, and this anti-napper sinks into sleep.
Eating
I used to crave pasta. A bowl of plain noodles was as good to me as a gourmet meal. Somewhere along the way, I lost my taste for pasta. –CS
While “feed a cold, starve a fever” might not be true, appetite changes often occur during this time. Some of us experience an increase in appetite, while others note a decrease, or a change in food preferences. Steroids are known to affect metabolism and how the body deposits fat. This can cause an increase in appetite, sometimes leading to weight gain.
Appetite loss is common among those who have undergone surgeries and in patients with cancer. According to Cancer Treatment Centers of America,[7] some cancers, particularly those of the gastrointestinal tract (like stomach and pancreatic cancers, as well as ovarian and lung cancer), often decrease appetite. Many anti-cancer drugs and treatments are also linked to a loss of appetite, particularly chemotherapies known to produce nausea and gastrointestinal reactions.
Cindy’s Journey One Bite at a Time
I have put my all into eradicating this disease and being healthy. I follow my doctor’s advice, walk regularly, take supplements, get acupuncture, use other alternative health interventions, work with a physical therapist, and rest more than I ever have in my life. The one area that could be better is my eating. I crave avocadoes, berries, and, wait for it, fried chicken! The first two are good choices, but fried chicken? I don’t know why fried chicken made the list, but there is something in it that I yearn for. Prior to this craving, I must say I had fried chicken fewer than a dozen times in my life. Now, I can describe the virtues of various fried chicken venues. Even with an increase in my consumption of berries and avocadoes, I knew I could step up my “food game,” so when a friend told me about an all-day conference about eating well and the benefits to one’s health, I signed up.
The first presenter was riveting, extolling the benefits of a plant-based diet. For those of you who may not know, this is code for a vegan diet. The information made sense, and I was ready to sign on the dotted line. Then, a chef prepared four recipes for us to taste at lunch. He chose easy-to-make recipes, and I found myself thinking, “I could do this.” Lunchtime rolled around, and in front of each of us were a couple of spoonfuls of the vegan version of macaroni and cheese. Now, if there is one thing I know, it is macaroni and cheese. I LOVE pasta, and as for melted cheese? What’s not to like? I couldn’t wait to dive in and taste this healthy version made without dairy products. I took a taste and… you got it: nothing like any macaroni and cheese I’ve ever had. Not even close! The “cheese,” made out of cauliflower and other ingredients, missed the mark. If the taste passed muster, I would have left the conference and gone out to buy every needed ingredient to convert my pantry to a vegan-friendly one. Steak, ice cream, and eggs be gone.
My resolve was dampened, but the intention of changing my eating habits was not completely lost, so I moved to the edge of my seat to hear the next speaker, who was an authority on the importance of specific foods to ward off cancer. The speaker’s authoritative manner and easy-to-add food choices further engaged me. Eat more green veggies. I can do that, check. Eat beans…well, okay. Eat seeds…got it. Eat onions, garlic, and mushrooms. Hm-m, okay, I can add those to recipes. Berries are necessary as they contain cancer-fighting agents. Well, I have that one mastered. I leaned back with some ease; I could definitely step up my nutrition with these items.
As the conference went on, I hit my inevitable wall of fatigue. I packed up my folder and handouts, scooted past those in my row, and left the room to head home for a rest. As I drove home, my car turned into a shopping center. I went into the shop and made a quick purchase. Back in my car, I continued home as I sunk my teeth into the shortbread cookie. A wave of guilt wafted over me. There wasn’t a bean, berry, green veggie, onion, or mushroom to be found in the buttery dough… but, boy, was it good.
Nausea, Diarrhea, and Constipation
Our bodies are complex systems. Just like falling bowling pins, one event can cause a chain reaction. Chemotherapy, anesthesia, medication, and stress can affect the gastrointestinal (GI) system, causing nausea, diarrhea, and/or constipation.
Chemotherapy often produces GI reactions. Chemo drugs can change how the body breaks down food, disrupting the GI system. Some chemo drugs irritate the lining of the throat, stomach, and/or intestines, making it difficult to eat a regular diet further stressing the GI system. And as many of us know, it can cause us to vomit.
GI reactions are not restricted to chemo. Medications, particularly pain medications like opioids, can negatively affect the GI system. Anesthesia slows down the movement and motility of the GI system. Our medical situations might cause us to be more still and sedentary, and this lack of body movement can further slow GI functions. When the GI system works more slowly, food and waste aren’t processed as usual, resulting in constipation.
Stress compounds gastrointestinal challenges. The stomach and intestines have more nerve cells than the entire spinal cord. The nerve cells in the gastrointestinal system communicate with the brain; this is referred to as the gut-brain connection. We have common sayings that illustrate this gut-brain link. We “feel butterflies” in our stomach when we are anxious. A difficult situation can be referred to as “gut wrenching.” A challenging situation sparks us to remark that we “can’t stomach” it.
For more information on the stress-body connection, stress expert Robert Sapolsky, expounds on this connection in his book, Why Zebras Don’t Get Ulcers. He does so in an engaging and sometimes humorous way.[8]
Cindy’s Journey Shit Happens
Today is a beautiful spring day with the temperature hovering around 66º. Trees are beginning to bud, the sky is a brilliant blue, and the sun is starting to warm the earth. I put on my workout pants, headphones, sunglasses, and ventured out to walk to the shopping center a little more than a mile away. I feel the sun warming my face as the music wafts through my headphones, my arms swinging to the beat. This is the first day I have been able to “exercise” in months. I drink it all in. I am happy.
Phil Collins sings “Against all Odds” through my headphones and I muse on the words, letting them empower me to handle this disease. Such conviction is abruptly interrupted about three-quarters on way: my intestines start to revolt. I need to find a bathroom. This isn’t my usual experience. This is different. This is uncontrollable. This is an emergency.
A high school looms to the left. There is no way I can quickly explain that I need to use their bathroom. In this day and age, they don’t let random folks in through the door and I don’t have an ID to show them. I was just out for a walk. I’m not prepared to be scrutinized by high school security. I hurry by the school, knowing the shopping center is around the corner. “I can make it” becomes my mantra. McDonald’s is my goal. I will be able to scoot in the door without needing to greet someone or show an ID. I pray I can get into the bathroom quickly. My steps hasten. I try to distract my mind and body with the songs that play through my headphones. No luck. BOOM. It happens. “Oh, shit.”
I get to the ladies’ room and yes, as humiliating as it is, the diarrhea side effect of the chemo the medical team talked about has hit. It has hit all over me. I untie my shoes, take off my workout pants, and remove my soiled underwear to find there is one square of toilet paper in the stall. Seriously? One square? My frustration mounts. I look behind me to see if a roll of paper sits somewhere else. Nope. Well, this won’t do. Naked from waist down in a stall with no toilet paper, I wrap my warm-up jacket around my waist and quickly dash into the other stall. Phew, toilet paper. I continue to fill the toilet. It comes furiously. Flush, flush, and flush again. This cycle repeats. Thank goodness, no one has come into the bathroom. It’s the noon hour, which is typically a busy time, but I have the place to myself. Flush, flush, and flush again.
I throw my underpants into the trashcan and tie up the plastic bag so my secret stays hidden. I clean up the best I can but tears well in my eyes and frustration washes over me. I didn’t expect this. I didn’t want this. My mind whines with self-pity as I lament that I can’t even take a walk with predictability. For the first time, I feel sorry for myself.
Leaving the stall and bathroom, I realize walking back home is too risky. What should I do? I am not one who easily asks for help, although people have sincerely offered any assistance they can give. I call a friend who lives close by. She answers, but she and her husband are hiking at a park. I call another friend. She will check out of a store, come right over to pick me up, and cart me home. She arrives with compassion. She understands. She doesn’t recoil in disgust at my tale.
She swings her car into my driveway and a wash of relief comes over me. Climbing up the steps to my room, feeling achy and fatigued as my intestines let me know they are still there, I am grateful to be home. I shower and then sink into my bed for a bit of a rest, looking out the window at the sun that continues to shine, promising hope and bright days. But today, shit happens.
A Challenged Immune System
During my chemo treatment, I was careful about placing myself in large groups. I did not want to unnecessarily fatigue myself or overexpose myself to germs. –MM
Our immune systems help us stay healthy and fight infections. When our bodies are battling a disease, injury, or stress, keeping our immune system healthy becomes more of a challenge. Our awareness is piqued, as we understand that microscopic germs float through the air. This can thrust even the steadiest of us into a rather obsessive-compulsive state. Even before COVID, we become avid hand washers and learn how to push elevator buttons with elbows and open doors with a hip or forearm. We aren’t afraid to change seats in the doctor’s office when someone lets out a sneeze and a cough. We don’t want a casual encounter to interrupt our treatment or healing.
My boys were in middle school and were excessive germ carriers, so I was limited on seeing them. When they would visit, even though I was in a special isolation room, they were required to wear masks, gowns, gloves and even shoe booties. My husband and I would do the same, so they didn’t feel bad. My diagnosis and losing my hair cannot compare to the possibility of missing out on their lives. I would say this was the hardest part. The fact that at almost 12 years old, they had to deal with some very serious matters. –LL
Pain
There are different types of pain. Pain can have a positive function warning us if something isn’t right. Feeling pain when lifting a heavy box lets us know that we overstressed a part of our body. If we ignore the warning and continue to lift boxes, an injury can be worse than it needed to be. Paying attention to our body is essential in getting assistance. Stabbing pain can be a warning of a heart attack, appendicitis, and more.
When my mom was first diagnosed with Stage 4 lung cancer, she didn’t have any pain. As the disease progressed, she had more pain. It was horrible to see. There was a day she was having a terrible time, in a lot of pain, and crying out when the aides came to help her. I lost it completely when I got home. –AR
Another category of pain comes from the illness, injury, or surgery itself. Having the flu makes us so miserable that the discomfort pushes us to rest and take care of ourselves. Rest and care help ward off complications. I’ve heard many people say they were shocked when they were diagnosed with cancer because they didn’t have any pain. Not all cancers create pain. Bone and advanced cancers can produce pain. Tumors pressing on a part of the brain or body can result in pain. The pain from surgery, bone breaks, concussions, and more remind us that our body has been assaulted and needs care.
I get headaches now. I’m not sure if they are from medication, fatigue, or stress, but the pain prevents me from functioning. –CS
Getting off the morphine was a journey into adjusting to the pain associated with the surgery. –GW
Chronic pain and diseases are the worst. I don’t think people with such things get the support they deserve. It’s easier to respond to someone after a heart attack, cancer diagnosis, etc. Others, including medical personnel, typically don’t understand what it means to have chronic pain. What people see on the outside doesn’t represent what is going on inside.
Dr. Sheetal DeCaria, an anesthesiologist whose work is dedicated to pain management, presents a Tedx talk entitled The bias behind your undiagnosed chronic pain https://www.ted.com/talks/sheetal_decaria_the_bias_behind_your_undiagnosed_chronic_pain?utm_source=tedcomshare&utm_medium=email&utm_campaign=tedspread
Dr. DeCaria shares the implicit biases about how women, children, and minorities are misunderstood and underserved in the treatment of pain. Being their own advocate becomes essential due to these biases. It’s hard to be your own advocate when you are in pain. Mustering up that energy is furthering depleting. Nurse practitioner, Linda Eld, who oversees treatment in urgent care centers, shares that urgent care centers have limited long term resolution of patients’ pain. The result is patients receive referrals to other medical care providers which can often seem to patients that they are being brushed off…again.
Due to osteoarthritis, my surgeries, and the impact of the disorder my medical charts read like a case study. It’s hard. I am often in pain. It’s difficult for others to understand. Recently someone I know had a torn meniscus. She apologized that she never realized the degree of pain I was/am in, since she had never experienced anything like it before. –LE
From the car accident, I have a metal plate in my head that causes sinus congestion and magnifies pain. I also have allergies. The combination of allergies, sinus congestion, and the metal plate often leaves me in pain. –CK
Unexpected Changes
Even with the best care, things happen that we don’t anticipate. Unexpected changes can run the gamut. Some have long-lasting results.
The side effect no one told me about was it brought on my menopause at a faster rate. So then I was dealing with night sweats, personal summers (aka hot flashes), physical body changes, etc. –RG
I had a severe chemical imbalance in my brain following surgery. I am under the treatment of a psychiatrist who prescribes anti-depressants, anti-anxiety and mood stabilizer drugs. I will be on these my whole life. –JZ
Cindy’s Journey Taller Than a Sixth Grader
I used to be tall. As a fourth grader, hitting my growth spurt on the early side led me to inch past my sister, Debbie, who is two years older. Referring to me as her “big little sister” to her friends brought smiles to their faces and confusion to mine. Being nine years old and focused on acting out WWII battles and playing in the dirt with the boys across the street, I was unaware of how my body was changing.
On a beautiful spring day, Mrs. Clark, my engaging fourth grade teacher, walked me down to the cafeteria. My mother had asked that I join my sister’s class for a movie. Wow, did I hit the elementary school jackpot or what? It was unlike my mom to let me miss class, but today must be my lucky day.
Entering the cafeteria rows of chairs replaced the usual lunch tables, I noticed the room filled only with girls in the sixth grade. Perplexed, but eager to reap the reward of getting out of class, I followed Mrs. Clark as she walked me over to sit with my sister’s class. Approaching them, I heard her friends ask my sister, “Why is she here? This is for sixth graders.” Debbie shrugged her shoulders as I took the seat at the end of the row.
The school nurse stood in front of the group, asked for quiet, and announced we weren’t to discuss the movie we were about to see with anyone other than our mothers. I thought that was odd. Then the lights dimmed, and in vivid black and white, images of a girl’s body and drawings of the reproductive system flashed on the screen. The movie’s narrator stated how her body and “yours” would change over the next few years. “Oh no, this isn’t good,” my mind screamed. I sent up a universal plea to take me away. I would do extra math, spelling, reading — anything to get out of here. But there I was, on a metal chair among a sea of sixth grade girls. Closing my eyes and ears, I melted into my seat, sliding away from the messages on the screen.
At the end of the movie, the lights flicked back on as the nurse directed us to walk back to class when our teacher’s name was called. Was Mrs. Clark going to come back for me? Would they announce Mrs. Clark’s name as if she were a sixth-grade teacher so I could leave? As the last class was called back to their classroom, I knew Mrs. Clark was still in our classroom, discussing the solar system or something else interesting with the rest of my class that I was missing because of this horror film. Still in a state of shock, I got up as the last class was called and stood at the end of the line. Walking in single file down the hall, I took a left, leaving them in my fourth-grade dust, bolting back to the safety of Mrs. Clark and my less developed, more innocent peers.
When I got home, I was going to follow the nurse’s directive and talk to my mom. I wasn’t going to talk about reproduction, menses, or breasts, but she had some explaining to do as to why she sent me to the sixth-grade horror show. Upon my tearful questioning, my logical mother, an OB delivery nurse, calmly explained that since I was growing more quickly than many of my friends, she wanted me to have the information so I wouldn’t be shocked when changes took place. Well, Mom, shock me now or shock me later; I am shocked.
As more typical daily events replaced the distress of the movie, my body continued to grow and change, and I started my period two short months after the movie, proving once again my mother is always right. Dismayed and not ready to embrace the changes, I kept it a secret from my sisters and friends for years. My growth also continued, reaching 5’7’’ in sixth grade and over the next few years two more inches would be added. I liked being tall. It was part of my identity, assisted my basketball success, and was simply me. But I am not tall anymore. It’s quite hard to get used to.
At one of my many doctor visits, a nurse had me step up to be measured. “Five six,” she announced. “5’6”? That’s not right! I’m 5’9”!” “It says 5’6”, so that’s what it is,” she proclaimed. Through the fracturing of my vertebra, radiation, age, and who knows what else, I am now 5’6” — maybe 5’7’’ on a good day. To many, this may not seem like a big deal, but when I stand next to my grown children, I notice the difference. When I try to reach the top cabinet shelf, I notice the difference. When my pants dip over the top of my shoes, I notice the difference. This is one of the many changes that this disease has created. After all, I used to be taller than a sixth grader.
My husband and I sit side by side and work on crossword puzzles. You might think it is a collaborative effort, but we turn it into a competition. He prints out two copies of the same puzzle, and with pencils in hand, we work separately, racing against each other to see who is first to accurately complete the puzzle. I must admit, he usually finishes sooner. The other night, a clue appeared asking for an “effect of surgery.” At first, I couldn’t think of what the answer might be, but the four empty boxes tipped me off. Scar. Yup, a scar is an effect of surgery.
Scars become constant reminders of childhood injuries, surgeries, and more. I have a round scar near my ankle that happened when I was about eleven years old and ran into the corner of the bed frame. Without the scar, I wouldn’t even remember this incident. The scar reminds me of a moment that occurred so long ago.
Visible scars can alert others to a situation we have encountered, but invisible scars sit within us, and people we encounter don’t know they are there. These invisible scars have an impact on our lives.
Cindy’s Journey What Is Her Name?
Today, at a store, I saw someone I knew. I started to move toward her to say hello, only to realize I couldn’t think of her name. I quickly scooted behind a sales rack to avoid her. But wouldn’t you know? She began to move toward where I was standing (hiding). Looking at my list to avoid eye contact, I mentally scrolled through what I knew about her to try to unlock her name.
As I struggled to find her name, a remnant of my memory flickered. Wait a minute. This should be easy, as her name is the same as a famous actress from the past. Flipping through a mental list of female actors, nothing useful came forth. Not to be outdone by my now-lousy memory, I grab my phone and input the name of her company, hoping to land on a useful clue. Nada. Nothing. Nil. So I do what any self-respecting person does? I go down the pasta aisle.
On my way home, I focus on the road, allowing my brain to relax, and her name pops into my mind. It feels so good to have the recall. For the rest of the way home, I smile as Joan Collins is recovered from my memory bank.
[1] https://www.cancertodaymag.org/Pages/cancer-talk/What-Is-Chemo-Brain.aspx
[2] https://www.sleepadvisor.org/sleep-statistics/
[3] Jeannette Y. Wick, RPh, MBA. “Sleep disorders and heart disease: a reciprocal relationship,” Pharmacy Times, December 10, 2014).
[4] https://www.cancer.gov/about-cancer/treatment/side-effects/sleep-disorders-pdq
[5] https://newsinhealth.nih.gov/2013/04/benefits-slumber
[6] https://newsinhealth.nih.gov/2013/04/benefits-slumber
[7] https://www.cancercenter.com/integrative-care/loss-of-appetite
[8] https://www.youtube.com/watch?v=D9H9qTdserM
Featured image courtesy of Holden Baxter on Unsplash.
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