Brighter magazine 2021 Q2 issue by brightermagazine

Finding joy in the midst of a Ewing’s sarcoma diagnosis

Ava Danuser

Pelvic Radiation Therapy CANCER’S SILVER LINING

A mother’s death brings life to the relationship of two sisters

SKIN CARE Simple tricks to help you battle the after-effects of treatment

A magazine for women affected by cancer

Editor’s Letter

Live. Learn. Shine. Introducing Brighter. I had taken some time to visit my dear friend Jean who was in the middle of her treatments for Ovarian Cancer. One evening she felt well enough to go out for dinner, so we connected with Kathy, another friend of ours, and went out for Mexican food as we often did years earlier, when we all lived in the same town. As we sat at the quaint little Mexican restaurant in Chicago, Jean began to share her heart with us. Traveling for work and pleasure, she often had a lifestyle magazine in her bag. She was always taken by the excitement of the latest hair, makeup, and clothing trends, especially shoes! These days things were different, however. The magazines that usually evoked excitement and the thrill of something new, now brought feelings of sadness and isolation. The hair tips she used to try no longer worked on her thinning hair or bald head after she had made the decision to shave. The makeup tips brought more challenges than joy as her skin needs had changed and her eyelashes and eyebrows were falling out. Her life had taken a hard turn and these magazines left a void that needed to be filled. 2

Sweet Jean, as I called her, passed away last January. It left a large hole in my heart and the lives of my family. It also lit a fire in my soul however, to see her vision become a reality. Brighter’s mission is to create a lifestyle publication that serves the mental, physical, emotional, and spiritual wellbeing of all women affected by cancer. cancer Whether a new personal diagnosis, in treatments, or in remission, you should be empowered, equipped and enthusiastic about your life during these critical times. The moment a woman is diagnosed with cancer, the way she looks at everything in life changes. What once were simple pleasures become complicated. We hope to simplify some of those challenges for our readers as they rest, relax, and read the articles that these wonderful women and survivors have written for you. Each story is designed to help you find a Brighter outlook for your day and future. - Helen Bowles

Helen, Jean, and Kathy on treatment day

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Table of Contents May often brings us to thoughts of our mothers. We hope you enjoy the thread that weaves the beauty of mother and child relationships throughout this issue.

Education Children’s Book Reviews

Pelvic Radiation Therapy

A Son Speaks Out

Empowerment Keep Calm and Balm On

Tips for Radiation Therapy

Encouragement

The magazine for women affected by cancer

Brighter Spotlight Ava Danuser

The Convertible Companionship

The Silver Linings of Cancer

Brighter Honors Survivors

Skin Care: keep calm & balm on By Tara Rasheta

Skin issues and changes are common complaints among cancer patients and survivors. Even if you’re not feeling well, everyone deserves to feel beautiful. Here are some easy tips to put your best face forward.

Be Gentle

Many cancer treatments including some chemotherapy, immunotherapy, radiation and hormone therapy are well-known for causing flaky, dry skin and rashes. Be sure to hydrate your face and body with creams, balms and ointments that are natural. Artificial colors and dyes (often derived from petroleum by-products) can further damage inflamed or sensitive skin. Fragrances can also become irritants not only for the skin’s surface, but also for patients experiencing nausea. Avoid hot showers and baths which can strip skin of natural moisture and consider switching to a low-pH cleanser like Cetaphil Gentle Cleanser.

Be Proactive

It’s wise to try out new products before committing to a whole new regimen. Since the skin on the face, neck and decolletage tend to be the most sensitive, consider testing new products on a clear patch of skin like the inside of an arm. Wash and dry the area, then apply a small amount of the product, wait 24 hours and see if your body has a reaction. Get ahead of those skin issues you know may be coming. For example, targeted radiation is notorious for causing a sunburn like rash. Prepping the areas with aloe vera gel can help and you may begin using it prior to starting treatment. According to the US National Library of Medicine, aloe vera contains 75 potentially active constituents, including vitamins, enzymes, minerals, salicylic and amino acids. Earth’s Daughter Organic Aloe Vera Gel is a nice option that has no added fragrance, colors or alcohol.

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Be Protected

The American Academy of Dermatology warns that anyone who has had radiation treatments has a higher risk of developing skin cancer in that area. Photosensitivity (extreme sensitivity to ultraviolet rays from the sun and other light sources) is also a common side effect of many chemotherapy drugs. While we can all use some natural Vitamin D now and then, be mindful to limit your direct exposure to the sun. Use a daily sunscreen with at least an SPF 30, and make sure that it protects against both UVA and UVB rays. Elta MD has a nice line of tinted and non-tined broad spectrum, light-weight sunscreens free of parabens and fragrances. Your care team may recommend skin care products that you can use. If not, ask. Looking your best will help you to start feeling better, and that’s all a part of your cancer journey.

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Aloe Vera

Cetaphill

SPF 30 Sunscreen

Fragrance free

Books to Help Children Process Your Diagnosis By Devra Langford

Everyone has questions when someone they love has cancer and its not always an easy topic to discuss. This month, we share a list of books to help communicate with your little loved ones. Children may not have all the words to express their concern or questions about your cancer, but they have many emotions. The following are a few books that are a wonderful resource to help you express your feelings and to assist in answering curious questions in a simple way.

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Mommy is sick. What do you do? By Marcia Ashford Mommy is Sick is a short children’s book featuring full-page illustrations depicting a teddy bear family. Each page describes something a child can do to be supportive of their mother when she’s feeling ill, like make her hot chocolate, take a nap with her or read her a story. The book never mentions cancer, thus the story would be appropriate to read to a child whose mother is experiencing any chronic illness. Best for children 2-5.

Our Family Has Cancer Too! By Christine Clifford with Illustrations by Jack Lindstrom Christine Clifford is the CEO of The Cancer Club, which specializes in marketing humorous AND helpful products for those with cancer. A cancer survivor herself, Our Family Has Cancer Too! is her 6th book. Written from the perspective of her 12 year old son, Tim, Christine tells the story of her family’s experience of her breast cancer, from diagnosis through post-treatment, with humor and cartoons dotted throughout. Tim’s commentary speaks directly about his experience as the child of a parent with cancer, with Christine’s cleverly placed “helpful notes to parents” sprinkled throughout the book. She even includes a glossary of terms a child might need to understand, a space for questions they might want to ask, and a page where a child can make a list of ways they can help their parent and family during this time. The book really drives home the fact that cancer impacts the entire family, and the importance of including every family member in the experience. Appropriate for children of all ages.

Nowhere Hair By Sue Glader and illustrated by Edith Buenen This whimsically watercolor-illustrated book focuses on a young daughter’s obsession with her mother’s newly bald head. Written in rhyme, she starts out searching high and low for the missing hair, and then begins to worry that something she has done has caused this dreadful thing to happen. Her mother explains that her hair fell out because of something called cancer, that it’s not contagious and that it will grow back. The ensuing hat/wig/ turban fashion show she has with her mother thrills the main character, especially as she picks her favorites and the ones she can do without. This delightfully written book lets the young reader see that it’s ok and normal to feel the gamut of emotions when peculiar and confusing things happen. Best for ages 4-8

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Promises By Elizabeth Winthrop and illustrated by Betsy Lewin Promises takes an interesting approach in its illustration of a young girl’s internal struggle with her mother’s cancer diagnosis and treatment. The little girl is frightened and resentful that her mother must go to the hospital so often, and especially when she has to stay overnight. She is embarrassed at her mother’s bald head and furious when her classmate remarks about it. A child reading this book would likely find comfort in seeing some of their own hidden fears and anger reflected in a book they read. As the father realizes how confusing all of this must be, and he begins to talk to her about what’s happening in a way she can understand, the little girl’s worry is eased, and she no longer feels so alone with her own sadness. Best for ages 4-7

Our Mom is Getting Better Written and illustrated by Alex, Emily and Anna Rose Silver As the title belies, this book, written and illustrated by the young children of a woman recovering from cancer treatment, tells us what life is like for their family after chemotherapy ends. It begins with their mom’s final day of chemo, and the watch they give her to celebrate that it’s “time to start healing”. They describe their mother’s fatigue at the beginning of the book and share how they’re able to help her as a family. As she regains her strength, they become a part of some new healthy practices: taking walks together, eating more fruits and vegetables, meditating, and cooking together as a family. It also briefly touches on the concept that her cancer might return and how they chose to view that possibility. Published by the American Cancer Society, the book also mentions the family’s participation in some specific celebration of life and cancer research walks and races as one of the ways in which their family moves forward. Best for kids ages 4-9

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Ava Danuser

Brighter Spotlight By Erin Schreyer Photography by Erin Schreyer

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Cancer can’t stop this mother, daughter duo from finding joy and celebrating little wins. Much like a typical teen, Ava spends what her mom might say is “too much” time on TikTok and SnapChat. She’s quite social and funny and just a little bit sassy. She wouldn’t naturally prioritize spending evenings with her parents, but, like most 13-year-old competitive athletes, she’d much rather be pushing herself in the gym, tumbling with her cheer squad and laughing with friends at local hang-outs. Instead of doing these seventh-grade things, though, Ava is currently most focused on battling a surprising and rare diagnosis of Ewing’s sarcoma. She’s quite determined and unquestionably eager to get back to her “regular life”. At the top of her list is cheer competition. “I love tumbling, and I’m always messing around in my back yard doing flips,” Ava explained. “We used to have a tumble track in the back yard, but we had to remove it,” her mom, Christine, interjects. “It was too…” “TEMPTING!” Ava exclaims, while giggling and showing off a huge, mischievous smile. It was while tumbling that Ava discovered an issue with her leg. She knew her landing wasn’t quite right, but she also felt and heard something that wasn’t quite normal. Although she came inside and stopped tumbling for the day, she went to cheer practice the following day and kept tumbling on what she thought was a slight injury. After multiple practices (and more backyard tumble time), she began limping and told her coaches she needed to sit out. At the time, she thought it was a hamstring pull that would heal with time and rest. For this exuberant, high-energy teen, “sitting

out” only meant that she wasn’t the one flipping. She kept herself in competition doing the stunting, which entails both throwing and catching acrobats high in the air. Still continuing to feel pain and discomfort, Ava’s coaches urged her to get an x-ray or MRI for an inside look at what was going on with her leg. Not wanting to miss a major competition, Ava delayed her medical appointment until Covid ultimately canceled the event. After submitting to see a physician, an x-ray showed “something” that wasn’t right, and Ava was encouraged to get an MRI for a more detailed look.

“When I tell friends I have cancer, I’m often smiling. . . ”

The orthopedist suggested crutches and full rest, since the injury was presenting like a hamstring pull, perhaps with a bone chip that was causing additional pain and inflammation. While they did notice a bone “abnormality,” experts thought it was likely a cyst and would be re-absorbed into the bone when inflammation went down. A second specialist later reviewed Ava’s scans and took note of the fluid-like substance in her leg bone, but surmised that it was most likely a non-ossifying fibroma (a benign cyst). Still, like others, pointing to most reasonable diagnoses for this otherwise healthy athlete. At that point, it seemed as if this bone abnormality had caused some weakness in her femur that, coupled with her intense tumbling, probably led to a small fracture.

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The prescription was months of rest with the aid of crutches and no tumbling, followed by additional scans, possibly more rest, and then ultimately surgery if all that didn’t help. So, what does an eager teen do? She says, “let’s just go ahead and do surgery now, so I can get back to doing what I love sooner!” Christine and her husband agreed, noting that it had been especially difficult for Ava to deal with crutches, both physically moving around in school and also emotionally with the absence of her highimpact athletics. Moving forward with the plan for surgery, their family decided to get yet another opinion from a medical professional, who suggested a bone biopsy. His thinking was that they could “rule out” anything major, while removing the cyst and filling the bone space, making it again solid and strong. But that wasn’t the case. “The surgery was supposed to take 45-minutes, or maybe longer if they ran into any complications or needed to fill the bone, “ Christine explained. “I was in the waiting room for only twenty minutes when he called me. I knew something was wrong. It was too fast.” Worth noting, due to Covid restrictions, this entire process has demanded only one parent at a time for appointments and even surgeries. Ava is well supported by both parents and grandparents too, but Christine has flown solo, as required, to accompany her daughter in person. Even with

a close-knit team, the waiting room assuredly exacerbates the isolation while waiting for news. She continued, “the surgeon came out and delivered the news in a way that was very straightforward and didn’t leave anything to the imagination, which I’m grateful for. He said, ‘It’s malignant. It’s called a round blue cell tumor, and it’s most likely Ewing’s sarcoma, and here’s what we’re doing next…’” The doctor proceeded to guide her through recommendations, timing and additional specialists (now a team of five). And the family is grateful that, although it’s an aggressive kind of cancer, they believe they’ve caught it early. So far, signs indicate that it’s remained local and has not spread. This is one piece of great news in the midst of the heaviness of all the other details. Amazingly, Ava is taking every bit of it in her youthful, optimistic and competitive stride (except when they tell her she can’t eat - she doesn’t like that part at all!). “When my parent told me, I just said ok,” said Ava. “And when I tell friends I have cancer, I’m often smiling when I do it. They’ll ask why I’m smiling, and I just feel like ‘why not?’ It happens. Why be all sad when you can embrace it and live with it?” “But then it hit me that I won’t be able to go to the gym and do cheer anymore,” she continued. “That part broke me - the fact that I don’t get to be with my cheer family and can’t do the thing I love most in the world…I was excited about not going to school though!”

“Two of the chemo drugs Ava is taking, I also took twenty years ago. I know what it feels like, and I believe it’s going to work for her, like it worked for me”

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Christine adds, “she’s handled it all really well. She just has a head-down attitude, but there’s been some hard moments. She’s a teenager, so there’s the complexity of wanting to give her space, but not too much space. She had just gotten to the point in life where she didn’t want to be with us, but instead wanted to be with friends. But, now if her blood counts are down, she can’t be with friends.” Amazingly, Christine is able to personally empathize with and understand her daughter’s journey. She, herself is a survivor, who fought through and overcame a rare form of uterine cancer in her twenties. Because of what she’s been through, she has a unique perspective to relate to Ava’s needs as she journeys through her own treatment. “She needs to see her friends, and she needs to go back to something that is happy and fun,” explained Christine, after giving Ava a surprise opportunity to visit her cheer friends in the gym. Christine knew there was some level of risk associated, but she’s determined to consider “the whole person,” and she knew Ava needed a dose of encouragement from people outside of the house. “It’s still tricky, though, because she’s a teenager,” warns Christine. “She’s not a baby, anymore, so sometimes I find things out when she’s ready to tell me. That happened when her hair started to fall out. I noticed one morning when she woke up that she had lost quite a bit. When I went to tell her, she already knew. She told me to go look in her garbage can.” Their special bond is easy to see as they giggle together, recalling what they’ve already been through. Christine emphasized the balance of sharing the journey and also giving Ava space to experience things in the way she needs to go through them. “Most of our friends found out Ava had cancer, because she announced it on TikTok,” Christine shared while laughing. “It’s not how

I would have done it, but this isn’t my journey…at the same time, there’s a weird familiarity. Two of the chemo drugs Ava is taking, I also took twenty years ago. I know what it feels like, and I believe it’s going to work for her, like it worked for me.” Their shared journey isn’t the only unique thing they have in common. There’s also a rare coincidence of a special date . Christine says it’s “such a God-thing” - truly a nod and affirmation that they were meant to be a family.

“I look towards what my future will be after this is done.”

“Because I had a hysterectomy due to cancer, we’ve always known we had to have a plan for children. After we made the decision to adopt, we got a call to meet a birth mother and her baby. We knew she was special when we found out her birthday was the same day as my cancer diagnosis day.” Christine explained, “there are only two days a year that are purely ‘me’ days - my birthday and my diagnosis day. I spoil myself on these days, and when her birth mother shared her exact date of birth, we knew it was an amazing miracle.” Hoping for more miracles as they venture through treatment of this aggressive cancer that “often spreads like glitter,” Ava is determined to just deal with what she can control and not get weighed down by the rest. Her positive mindset is a key driver. I don’t like to think about all the bad stuff that could happen,” she said. “I look towards what my future will be after this is done. Watching TV

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and eating helps too. I like to eat.” When asked about her advice to families who have teens going through cancer, Ava was quick to respond,“give them their space! They still love their space!” She added that it’s also very helpful for friends to continue support throughout treatment. “FaceTime and drive-by or outside visits help a lot. I’m stuck with my parents all day.” Christine added her thoughts as both a survivor and mother, again walking this journey, but this time alongside her teen. “The support at first is so much, it’s almost overwhelming, but it also wanes over time. That’s okay. It’s natural, but especially for kids, they need to see their friends.

People don’t realize how long the treatment goes, and it’s so helpful to have friends checking in and keeping that interpersonal connection for the long haul.” As the interview concludes, Ava gets up from the couch and proceeds to the kitchen. While sharing her final thoughts, she scoops chocolate ice cream into a bowl. “It’s my favorite,” she says with a wry smile. “Sometimes I eat it not just for dessert. I can work that angle now.” The clever wit of a typical teen comes through. Cancer doesn’t stop that, and Ava savors her win for the day. Every single one counts for this competitor.

A Model Patient is a 501(c)(3) non-profit organization dedicated to serving women around the country who are facing cancer. It is a woman-to-woman, grassroots approach in order to positively and directly impact patients. A Model Patient was founded by Tara Darby Rasheta as she was facing her own breast cancer battle at the age of thirtyfive. The outpouring of love and support she received from her community inspired her to start this charity. A Model Patient touches women through thoughtful gifts and meal deliveries. If you are A Model Patient or know of someone battling cancer, please request a free gift. The organization will assess the needs of the patient and donate goods accordingly. The inventory is built through donations, financial contributions and fundraising efforts. Donations can be made by check, Paypal or by clicking the donation button on our website.

www.amodelpatient.org

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We are not victims of our diagnosis. We are standing up and taking our lives back. We are SheStrong.

www.SheStrongTeam.com SheStrong Group

SheStrong endeavors to create a supportive, fitness minded community to inspire and motivate women impacted by a cancer diagnosis. We strive to empower women and give them a positive environment where they can be motivated and motivate others.

Through national programs and local NOCC chapter initiatives, the NOCC’s goal is to educate communities and increase awareness about the symptoms of ovarian cancer. The NOCC also provides information to assist newly-diagnosed patients, hope to Survivors, and support to caregivers. The NOCC is also committed to the advancement of ovarian cancer research.

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Pelvic Radiation Therapy By Janice Skidmore

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A Personal Look at Pelvic Radiation Therapy I’ll call her “Kate” for this article because she preferred not to share her identity. Withholding her identity holds a very specific purpose; Kate explained, “I don’t want this article to be about ME, personally. Yes, it’s my journey, but I want my story to be an inspiration to others. I want women to feel like it’s anyone’s story.” You got it, Kate! Let’s start inspiring. Kate’s journey began after completion of her required dosage of chemotherapy to treat ovarian cancer. “In my case, the cancer had metastasized, so my doctors felt it was best to take the extra precaution of adding radiation therapy to my cancer treatment.” Four weeks after her last round of chemotherapy treatment, Kate’s radiation therapy appointments began. “I wasn’t afraid because my mother had radiation therapy, so I knew what to expect. However, my body was still extremely tired from chemotherapy, so I was absolutely dreading this next treatment plan. I felt very much ‘disabled’ (for lack of a better term) in that I was physically unstable and emotionally weakened. Knowing I had to start another treatment that would bring me down even further was tough to accept. I remember that I was trying to figure out where I’d get the strength to even begin, let alone finish. Also, I had to figure out how to tell my young kids that chemo wasn’t the end – that another treatment was required. I wanted them to know that I would be feeling sick again, but I didn’t want to upset them. So, I meditated and talked with friends and realized I simply had to accept it. I had to accept that I would HAVE to be strong enough for myself and everyone who loves me. With this acceptance and determina-

tion, I felt more ready to start this next journey in my cancer battle.”

Cancer during corona virus

During Covid-19, cancer treatments have their own unique set of challenges. In Kate’s case, it meant that because schools were shut down, she would need to have the energy to homeschool her two children until 3:00 pm sharp each weekday and then head to treatment. For her husband, it meant a change in his work schedule so he could be home just in time to pick Kate and their two kids up and rush to the treatment center. Kate gushed, “I’m very blessed that I have a husband who is so loving and supportive. His new work schedule meant that had to be at work at 5:00 a.m. so he could leave early enough to take me in for treatments. (We’re so thankful to his employer for being flexible!) Then, after we got back from radiation therapy, he would cook dinner for the next day and heat up what he made the night before, so he and the kids had home-cooked meals most of the time.” Receiving help is also another huge challenge during the Corona virus pandemic. Kate shared, “Due to my compromised immune system, my husband was very afraid of any of us being exposed to Covid-19. As a result, he wouldn’t accept much help from our friends and neighbors who had offered. I felt so worried for him because he was working full-time and then would come home to clean, cook, shop, do laundry, drive us to and from treatment, and also cared for me. After this personal experience, my advice to anyone going

“With acceptance and determination, I felt more ready to start this next journey in my cancer battle.”

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through this therapy is to get and accept all the help you can. Don’t try to take on too much yourself. This goes for caretakers too! If your friends, family, and neighbors offer to cook meals, grab your groceries, or some other help, I suggest you let pride and the worry of being a burden to others fall away. First: they wouldn’t offer if they didn’t truly want to help. Second: they don’t have to come inside of your home for some of these tasks so you can still keep a safe distance and help keep yourself protected.”

Kate’s experience

One of the biggest challenges of radiation to the pelvic region for Kate was the requirement to have a full bladder. A 99% full bladder to be exact. Kate stated, “My radiation therapy was 25 treatments in total. In my case, I had 5 per week until completed. The first major challenge was figuring out how much water to drink in order to have a full bladder. It’s a little tricky, but you get more accustomed to it as time goes on.” Kate continued, “With a full bladder, it was quite uncomfortable to lay on the table for the approximately 15 minutes that my radiation therapy took. Very quickly, I began to know by the sounds the machine made how soon I would be done so that I could use the bathroom and knowing relief was coming soon helped the time to pass quickly.” I asked Kate what happened if her bladder wasn’t full enough. She answered, “That happened a few times. In that case, I would have to sit and drink more water until it was full enough. But everyone was patient and kind when this happened. We even found small ways to share a few laughs from behind our masks.” Kate quickly added, “But a full bladder was the least of my worries by the second week. During that time, I began to have terrible nausea and then uncontrollable diarrhea set in. Even while

homeschooling my boys, I had to be very close to the bathroom and sometimes couldn’t leave it for long periods of time despite having taken anti-diarrheal medications. As my treatments went on, I ate less and less and became super weak and I cried often. (I tried not to let my boys see me crying because I didn’t want to cause them any extra worry.) A few foods that I was able to hold down were gelatins, soft fruit, and applesauce. I also always kept ginger ale handy because it helped to soothe my upset stomach. For me, after my last treatment, the side effects began to ebb pretty quickly, and I carefully re-introduced more foods into my diet. But not everyone recovers as quickly. For some women, digestive issues can remain for several weeks after completion. A bright note in all of this is that all the way through my treatments, my team of doctors and nurses were fantastic! They checked in on me regularly and offered as much assistance as they could give. I

“Survivors and caregivers, get and accept all the help you can.”

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recommend that if your medical team isn’t supporting you in the way you need, reach out and let them know. Express your needs and give them a chance to step up.”

Skin “burns”

As Kate and I continued our conversation, we talked about the side effects that may be present during radiation therapy and she brought up skin issues. One of the most common is what is frequently referred to as skin “burns.” These are sores on the exposed skin areas that can occur at

Kate’s Radiation Therapy Suggestions: • •

•

• • • • • • • • • •

Be patient and kind to yourself. Kids forget! If you told them something about your radiation therapy, they may not remember, or they may not have understood what you said. So be gentle with them. Just tell them again and ask if they understand. If not, try to find a way to help them understand as best as they can. Seek out and participate in online support groups. This is good to do for yourself, but also your caretaker(s) and children should do it as well. Everyone involved can benefit from cancer support groups. Remember that caretakers are making sacrifices and they may be frustrated and short-fused because of the stress. Give them space and return focus to your health and healing. Communicate, a lot. Keep a list of questions for your medical team and don’t be afraid to ask because no question is stupid or silly. Be sure to stay connected to friends and family as much as possible by phone or computer. Write lists or notes to help you and your caretaker(s) to remember things. Always accept help when it’s offered. You may need to take time off work during this treatment which can be hard not just financially but emotionally as well. Get as much information as you can about financial resources that may be available to you and don’t forget to seek out counseling for yourself. Loneliness: It’s hard for some people to understand what you’re experiencing. Some may not want to even hear about what you’re going through. When this happens, it can leave you feel lonely. This is when your support group(s) and/or counselor will come in super handy. Be open and be informed. What I mean here is to be open to receiving help and be very informed about your medical situation so you can make the best decisions as possible. Love yourself and care for yourself. Seek out massage therapy, reflexology, and other relaxing, helpful therapies when you feel well and safe enough to enjoy them. Meditation can be amazingly helpful, by the way. Speak up! If at any time you’re not feeling that you’re getting the best care, if you need help, or if you don’t understand things, speak up loudly and clearly. You need to be your own best friend while you undergo cancer treatments. In future OBGYN exams, don’t forget to mention that you’ve had pelvic radiation therapy because pap smears my be painful due to the potential existence of vaginal scarring.

If you may need to have radiation therapy, you can learn more about it from trusted resources such as the American Cancer Society. Always seek guidance and information first and foremost from your personal physician(s).

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any time during radiation therapy. They can occur because radiation therapy is given to the same region repeatedly and as a result, it can sometimes cause exposed skin cells to fall off more quickly than they can re-grow which can result in rashes, sores or blisters on those exposed areas. (A physician may refer to this as “radiation dermatitis.”) I asked Kate if she incurred this type of skin trouble during her treatment. She responded, “No. I was very fortunate not to have had any burns. However, I had a complete hysterectomy and debulking surgery for ovarian cancer only about 6 months before I began radiation therapy so the skin on and around the resulting scar became agitated and slightly painful. I used over-the-counter moisturizers and calendula oil and, thankfully, I was fine. But I recommend contacting your medical team right away if you experience any skin discomfort during or after radiation therapy.”

very personal and emotional. As I faced it, I ended up greatly longing for the ‘old me.’ The me that existed prior to cancer. I am a young woman who is very much in love with my husband and after all I’ve been through, the thought of sex being painful and uncomfortable has been difficult to process. Fortunately, he is very compassionate and understanding. But I am sometimes not as compassionate and understanding with my own body! Learning to love the ‘new me’ has been another step in my journey. I had to overcome the sadness that sometimes washed over me as I worried about my life as the ‘new me.’ To do this, I used meditation, giving myself grace, and being thankful for my body that’s doing its best to heal. I also chose to focus on doing all I could to help my body physically heal. I knew that if I did (and continue to do) the program my medical team instructed me to do, I was giving myself the best opportunities to regain a more normal sex life - and life over-all.” Kate’s radiation therapy physician had a program set up for her to help reduce the effects of vaginal scaring. Kate continued, “In order to improve vaginal wall flexibility, my radiology doctor prescribed the use of a personal dilator to gently expand and lengthen my vaginal walls. At first, because my mind was lamenting the ‘pre-cancer me.’ I found using a dilator… kind of depressing and awkward. But since then, I keep my focus on returning to a life closer to what I had before cancer, so it has become less emotional or awkward. Also, my husband and I make silly jokes about it in order to keep our humor up. What I recommend to other women who may be facing pelvic radiation therapy is to get as much information about vaginal scarring from your medical team as is available. Also, seek emotional support from a counselor.”

“Learning to love the ‘new me’ has been another step in my journey.”

Intimacy post therapy One of the hardest discussions to have regarding pelvic radiation therapy is a side effect that we as women don’t often discuss openly: vaginal scarring. It can happen because tissues inside and around female organs are delicate and radiation therapy, although given externally, may result in internal scaring. Vaginal scaring can cause the vagina to narrow and/or shorten. Kate was informed of this by her medical team but within this article she wanted to share some of the personal feelings she had as a result. Between some tears, Kate told me details she hasn’t been able to express to anyone else. She began with, “As I said earlier, my team of nurses and physicians were fabulous, so they did their best to prepare me for the potential of vaginal scarring. But medical discussions aren’t the same as actually experiencing it. This particular side effect is The magazine for women affected by cancer

Caregiving

Convertible Companionship By Meredith R. Mitstifer, Psy.D

The blessings of converting relationship rolls to adjust for the needs and stresses during cancer treatment.

Letting go of the Wheel As a young ovarian cancer survivor diagnosed at the age of 30 and pregnant, thinking about the pending birth of my child and the unknown factors regarding both of our futures, was brutal. Cancer is not easy, it is not fun and it is unpredictable. I hated the loss of control, the weakness, and the inability to care for my newborn at times when I had intense vomiting, fatigue, diarrhea and low blood counts. Life took some surprising turns, and I hated the vulnerability exposed. Quite frankly, I fell into a bit of darkness. I was left to be cared for by my parents with my newborn. I have always been fortunate to have caring parents. However, at this time in my life, I 20

hated having to rely on and need them so much. I learned quickly however, what I think was worse than having cancer. Perhaps my opinion was based on the fact that I was a new mother, but I couldn’t imagine anything like this happening to my own child. Watching my diagnosis through the lens of my mother: the quiet fear in her eyes, her difference of opinion when initially diagnosed, countless appointments with minimal answers, her initial cautious approach, the silence that consumed her when navigating a plan, and watching her demonstrate such caring strength for her grandson while toxic poison dripped into her daughter with hopeful results, was heart wrenching. To me, that has to be www.brightermagazine.com

worse than cancer, and I pray that I never have the same experience.

Following your Navigator

My mom wasn’t quiet for long and she mastered the art of caregiving when I desperately needed it. Don’t get me wrong – there were times I wanted to scream and be left alone. This though, was never an option. My mom told me we were no longer driving with the top up. I will never forget her endless protein shakes and the moment she told me to “get up and go walk on the treadmill.” I remember looking at her like she was a psychopath. This was the ride I needed, however, the wind in my spirit I so desired, and the light in my soul I felt was lost -despite hating the first few moments of her idea. My mom not only cared for me, but my son as well. She had one on her hip and one moving to her lip. She listened, she motivated, and most of all, when she kicked - she kicked me forward all while caring for my son at the same time. While I know this must have been exhausting, she seemed to do it effortlessly. She is the one person that listened to my deepest darkest fears, my moments of mortality review, and was simply there – all the time. Her love, dedication and insistence of riding with the top down – was clearly the medicine that generated the most favorable results. For this, I am forever grateful.

Looking in the Rear View Mirror

Thankfully, I have had years of survivorship since those dark days. While sharing our story was never considered the first few years after diagnosis, I came to the realization that women, daughters, mothers, and grandmothers were surviving alone. Therefore, Ovarian Cancer advocacy and support of caregivers has become a lifelong platform for not only myself, but also my son. As a mother, this is a pretty cool lens to look through. Even better, The magazine for women affected by cancer

is when I catch the grandson sparkle through my mom’s lens. While both of us have come along way, I truthfully believe my mom is still healing from a likely complex caregiver burden that I watched her suffer with silently. However, there is nothing that a ride in her convertible can’t heal. She taught me

Meredith and her mom riding with the top down

that. Sharing our stories, speaking our truth and bearing witness to our deepest vulnerabilities has been incredibly therapeutic and enriching for our relationship. When I reflect on caregivers, I am eternally obliged for the caring convertible companionship my mom offered without hesitation, without pause, through my cancer treatment and beyond. From here on, we only ride with the top down. Thanks Mom. The art of care-giving is no easy task. Research consistently suggests caregiver stress to be an epidemic in our communities. The allostatic load of multiple stressors on a daily basis, with minimum time to recover in between events that may be intense and unpredictable, creates complex caregiver burden. Factor in multiple competing priorities, no wonder unrelenting stress, followed by negative physical and psychological health effects can occur.

A Son Speaks Out By Ryan H. Mitstifer

When it comes to talking with your teen about the burdens you carry. It is often tempting to withold information thinking it will protect your child. Ryan H. Mitstifer Walton shares why he advocates for sharing more rather than less.

My name is Ryan. I am 17 and a senior in high school. I enjoy photography, I am trying to be a yearbook editor in the midst of COVID19, and hopefully the manager next semester of our high school championship baseball team for a 4th year. I am a male member of #Generation Z, and since the age of 12, I’ve been talking about ovaries, advocating for awareness, and most of all – sharing with survivors, families and organizations the importance of “including us.” I know what you’re thinking…..talk to my teen? (Insert their eye roll here) Yes – I get it. Sometimes we are not the best listeners (typically chore related…) and we tend to communicate in a different type of language. Our preferred languages are snaps, yes I said snaps, text, hashtags or pics…. and rarely verbal. However, when your mom is a psychologist, being nonverbal is never an option. While at times it was painful, (I am still triggered by

front seat car rides where there is no escape…), I get it now. I can’t imagine not having the opportunity, perspective or space to ask whatever I wanted growing up.

“You are not protecting us by your silence.”

Let’s face it – as kids and teens - we already know when something is wrong. You are NOT protecting us by your silence. Talk to us. Tell us your fears, and let us know how we can help. Take us with you. Make us listen. There are some days I wish my mom wasn’t so honest, but in the end,

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not knowing would be so much worse. I have a very creative mind and it can go down a rabbit hole super-fast. I credit the advancement of technology and news at our fingertips for the quick trip to darkness. Creating those moments and a “safe space”, as my mom refers it, to ask anything – and I mean anything, have helped create and shape the person I am today. One learns very quickly about not sweating the small stuff, when big stuff like cancer takes a seat at the kitchen table. The more comfortable, aware and knowledgeable we

feel about an already uncontrollable experience like cancer, the better help we can be. We’re not as bad as you may think….. and we can provide serious snapchat entertainment. Include us….and when things get rough, we simply will ride the storm together. If this article makes you want to snap, go ahead and add me to your snapchat @neonvibe318. I can also be reached on Instagram @ryeno_31 and yes, I even have a Facebook account (Ryan Walton) which my mom says I can’t say is for only old people…

Brighter

JAMs Music for your life

Let these tracks fuel you for your next treatment or workout. Filled with energy and beat, they will fire you up to tackle whatever hard thing you wish to take on.

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THIS IS IT - Oh The Larseny BRAVE - Don Diablo, Jessi J UNSTOPPABLE - Sia

The Silver Lining of Cancer By Helen Bowles

Joy Found in Sadness My mom was diagnosed with Pancreatic cancer when I was 28 years old and pregnant with my first born. Further research and second opinions informed us that it was stage four. Even with the most aggressive chemo she would likely only have sixmonths-to-a-year to live, so we decided as a family for quality over quantity of life. She chose to change her diet and lifestyle dramatically rather than proceed with the conventional approach of chemo. Fortunately she remained with us for nearly three precious years. When I look back at the days that filled those years, I see so many wonderful things that took place because the awareness of mortality had been heightened. Life prioritization became essential. Work schedules were changed so that others could go with her to doctors appointments, free time was focused on being with her whenever possible. My mother who had spent so much of her life caring for others, now needed others to help care for her. Everyone sacrificed and it paid dividends that still benefit us. My mom had always been others-focused and that never changed. If it was a trip to the grocery, out to dinner, or to church, she always sought to know the people who crossed her path. Her goal was to show these people a love like they had never seen before. She wanted them to know they were special. She shined a light where ever she went. After some time, she was not able to get out as much. My father says, “When she wasn’t healthy enough to go out anymore, things at the house began breaking. Service technicians would come and go and

she welcomed them with the same enthusiasm despite being home bound!” When things slowed down, she began to focus more on herself and became more introspective. She began to share with me the things that were revealed to her. She shared the mistakes, as well as, invaluable decisions she was so thankful to have made. I learned so much about who I wanted to be and did not want to be from those conversations. Even today, 17 years later, I find myself sharing many of her insights with my own children as they grow into independent, young adults. My eldest even says, “At times, I have to remind myself that I never knew her”. As my mother’s disease progressed, my sister and I both quit our jobs to spend time at home, helping our dad care for our mother. It was then that my sister and I built the relationship that we have now. Ten years apart in age, we had very few things that caused us to interact. She had left for college by the time I was seven and didn’t return home often. After all these years, we were now experiencing something together for the first time. We were now sharing numerous hours under one roof as adults with three shared goals: care for mom, care for dad, and remain sane and positive at all cost. Despite the ten year age gap, we found common ground and many things that made us alike both in interests and mannerisms. What a fun treasure to find.

Christie with her daughters, Helen and Paige.

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Those days in 2003 and 2004 with my sister and father were filled with wonderful memories, both sad and silly. Memories of the silly things Mom would say when we would move her from place to place or help her get dressed. Memories of the crazy foods she would request, that sounded good to her at the time. Like avocado and peanut butter sandwiches. (We definitely thought something wasn’t right when she made that request) We learned the importance of evening out the delivered casserole leftovers in the fridge. (You really must eat it until it’s even) It may have contributed to my growing waistline, but I would blame my unborn child instead. Memories of late night talks of things of importance and things inconsequential. We have bonding memories to fill a lifetime. It’s been 16 years since my mom passed away. It sounds very strange to think she might say that she was thankful for her cancer, but in some ways, I know she would. If it had not been for cancer, we would have all stayed busy. She might not have been so intentional with her final years. She might not have had the urgency to share the hope and future she had and believed in. Others might have missed the joy and peace she showed one can have in times of trial. My sister and I would have never built a relationship that today includes daily conversation. And me? I would have focused on my life and myself as a new wife and soon to be new mother. I would have missed learning things about my mom and my future because we might have never taken the time. I would have missed the lesson of focusing on others. I would not be the person I am today had she not suffered and died. I stand here as proof however, that it was not in vain. I believe all people go through trials and suffering. It looks different for each and every one of us. We don’t get to know if or what it will be. If we did, I think we would likely run whole heartedly in the opposite direction. We would also run away from the unknown blessings that can occur as a result of such growing trials. I know my mother’s heart, however. I believe, if she knew of all the lives that she was changing because of her diagnosis and struggle. If she could have seen the healing of relationships. If she could see the encouragement that her experience gave others. I believe in her heart, she would have put her head down and run directly in to tackle that trial with everything she had. I think she would do it all over again. That’s the kind of woman she was, and I hope to be when my trials come. To all you survivors reading, I have not been where you are, but I have been deeply changed by a woman who was. Please be encouraged to love deeply, live fully, and shine brightly. You have the ability to change generations.

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Christie in the place she loved most, on the family farm in Quanah, Texas.

“Mom’s cancer gave us a gift of time that brought healing to our souls, and our relationships with God and each other.”

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LIVE. LEARN. SHINE This issue is dedicated to Jean, without whom, Brighter Magazine would have never been a reality.

Jean Anne Maday (1972-2019) Jean knew what was important. She did not let her diagnosis change who she was. She lived. She loved. She shared her story. She inspired others. Cancer did not define Jean. She was our WonderWoman. If she was here, and you could meet her, she’d take time to listen to your story. You would know you matter. You are someone else’s WonderWoman, don’t doubt that. Some of Jean’s lasting advice to all of us, “The present is a present.”

The following page is dedicated to the strong women affected by cancer, living and passed, who inspire us to live “Brighter” lives. If you would like to pay tribute to a survivor in our next issue, register your loved one’s name on our website. www.BrighterMagazine.com

The magazine for women affected by cancer

Honoring Those We Love Those with us Cindy Baker (Breast)

Those greatly missed Irene Brown 1915 - 1997 (Breast) Jennifer Clouse 1972 - 2016 (Breast) Billy Darby 1924-2011 (Lung) Richard Darby 1950-2008 (Pancreatic) Carol Frasier 1944 - 2019 (Breast) Jean Maday 1972 - 2020 (Ovarian) Lauren Madeley 1980 - 2020 (Breast)

Kristi Bernstein (Leukemia)

Lary Rasheta 1940-2021 (Prostate)

Ava Bernstein (Neuroblastoma)

Barbara Rodney 1940 - 2017 (Pancreatic)

Janie Bowles (Thyroid)

Katy Rubarth 1966 - 2021 (Breast)

Stacy Brown (Uterine)

Christie Steele 1942 - 2004 (Pancreatic)

Ava Danuser (Ewing’s Sarcoma)

Jan Waters 1955 - 2019 (Esophageal)

Christine Danuser (Uterine) Tarrin Kennedy (Leukemia) Meredith Mitstifer (Ovarian) Sandy Ralston (Cervical) Brandy Ramirez (Breast) Tara Rasheta (Breast)

Valuing similarities & differences

Janice Skidmore (Ovarian) Jennifer Foss (Breast)

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ABOUT PANCREATIC CANCER SYMPTOMS

Abdominal or mid-back pain

Pancreatic cancer may cause only vague symptoms. If you are experiencing one or more of these unexplained symptoms, the Pancreatic Cancer Action Network urges you to see your doctor.

Loss of appetite

Jaundice

RISK FACTORS

Weight loss

Nausea

Change in stool

Recent onset diabetes

The exact causes of pancreatic cancer are not yet well understood, but research studies have identified certain risk factors.

Family History

Diet

Obesity

Race

Risk increases if multiple first-degree relatives had the disease or if any were diagnosed under 50.

A diet high in red and processed meats may increase risk. A diet high in fruits and vegetables may decrease risk.

Obese people have a 20 percent increased risk of developing the disease, compared with people of a normal weight.

African Americans and Ashkenazi Jews have a higher incidence of pancreatic cancer.

Smoking

Gender

Age

Diabetes

Pancreatitis

Smoking may cause about 20-30 percent of all exocrine pancreatic cancer cases.

Slightly more men are diagnosed with pancreatic cancer than women.

The chance of developing pancreatic cancer increases with age.

Long-standing (over 5 years) diabetes increases risk.

Chronic pancreatitis increases risk. Risk is even higher for people with hereditary pancreatitis.

Learn more about: Risk factors at pancan.org/risk Symptoms at pancan.org/symptoms The magazine for women affected by cancer

Be a Part of Brighter! There is so much joy when using your gifts and talents to serve women affected by cancer. If you or someone you know would like to help with future issues of Brighter Magazine, please contact us.

Photographers Writers Story Tellers

survivors, family members, friends and organizations

Help us make Brighter better Beauty Industry

makeup artists, salon professionals serve women affected by cancer? If you are interested in Do you have a knowledge or a skill that would help us

Healthcare Workers

This Month’s Contributors Editor-In-Chief Helen Bowles

Creative Director Andrea Brusuelas

Graphic Designers Helen Bowles Kim Iltis

Writers Devra Langford Meredith R. Mitstifer, Psy.D Tara Rasheta Erin Schreyer Janice Skidmore Ryan H. Mitstifer Walton

Editors

Ryan Bowles Venieca Kusek Paige Steele

being a part of the Brighter Team, contact us today! www. Brightermagazine.com

medical professionals, caregivers, nutritionists, health and wellness professionals

Artists graphic designers, editors, illustrators

Supporters friends, family, advertisers, organizations and businesses 30

We have been so blessed by the wonderful people who have helped us put together this issue. If you would like to know more about our contributors please, visit our website at www.BrighterMagazine.com.

Photo Credits Erin Schreyer - cover and pg. 9 Meredith R. Mitstifer, Psy.D - pg. 21 Steele family photos - pgs. 24, 25 Adobe Photo Stock - all other pages www.brightermagazine.com

Information in Brighter Magazine is to provide you with encouragement, awareness and education. The articles reflect the opinions of the authors and are not to take the place of professional medical advice. There may be a variety of perspectives on the subjects covered in Brighter. Tips, treatment and advice that is found helpful for some may vary based on the person. All of us at Brighter suggest that you talk to your medical team before making any changes to your lifestyle or daily living.

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The lifestyle magazine for women affected by cancer

Brighter Magazine donates a portion of sales to cancer research and support. www.brightermagazine.com