Category Archives: Guest Bloggers

5 Lessons From An Ovarian Cancer Survivor

This is a guest blog post by MyLifeLine founder, Marcia Donziger.

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marcia-photoIn 1997 I was 27, happy, free, and traveling the world as a flight attendant. Newly married and ready to have a baby, I felt strong and invincible. My future was unfolding just as I expected it to. Until the symptoms appeared ever so subtly. Squeezing cramps around my waist. It hurt to pee. After a few weeks, I marched my invincible self into my doctor’s office, told her I diagnosed my own bladder infection, and may I please have antibiotics.

She decided to investigate a little further. After an ultrasound, she discovered a grapefruit-sized tumor growing on my left ovary. “Could it be cancer?” I asked. “No,” my doctor assured me, “you’re too young to have cancer.”

Surgery was scheduled to remove my “benign tumor.” I was excited to get it over with, so I could go on with my life and have babies. After 5 hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing in pain. My doctor hovered over me and broke the news, “I’m sorry. You have ovarian cancer. You’ve had a complete hysterectomy. We took everything out.”

What I heard loud and clear was “Cancer. You can’t have children.”

The diagnosis came as a shock. Stage IIIC ovarian cancer had taken over my abdomen, resulting in an emergency hysterectomy that I was not prepared for. The intense grief hit immediately. The loss of my fertility was most crushing. I had always wanted to be a mom.

Halfway through chemo treatments, I celebrated my 28th birthday, but there wasn’t much to celebrate. My marriage was dying. Cancer puts tremendous stress on a couple. Some couples can handle it together like champs. We didn’t. We divorced 1 year from the date of my diagnosis.

After treatment ended, I looked in the mirror to see what was left. I was 28 years old, ravaged physically and emotionally, divorced, and scared to date as a woman unable to have children.

Who would love me now?

Now, almost 20 years later, I feel strong again (although not invincible).

With the benefit of time and perspective, I’ve distilled that traumatic cancer experience into 5 life lessons:

  1. Trust grandma’s reassurance, “This too shall pass.” As an ovarian cancer survivor herself, my grandma is living proof of this timeless wisdom. Stressful events don’t have to be permanent. We don’t have to be victims. Although cancer is extremely painful and unwelcome, the bright spot is we are forced to build character traits such as resiliency, emotional courage, and grit.
  2. Create your own joy in the midst of crisis. There are ways to uplift yourself during the chaos of cancer treatment. For example, I took a pottery class throughout my chemo months to find solace in distraction and art, which helped soothe my soul and ease the journey. What would make you happy? Do something just for you.
  3. Stop doing what you don’t want to do. If you were doing too much out of obligation beforehand, try to change that. You are only obligated to make yourself happy. No one else can do that for you. The key is to use this wisdom to prioritize your time and honor yourself, so you can be healthy for others. Drop what doesn’t serve you. Drop the guilt. Life will go on.
  4. Connect with others. The emotional trauma is hard to measure in a medical test, but it’s real. Anxiety and depression can go hand-in-hand after cancer–it did for me. In response to the emotional challenges I experienced, years later I founded MyLifeLine.org Cancer Foundation to ease the burden for others facing cancer. MyLifeLine.org is a cancer-specific social platform designed to connect you with your own family and friends to ease the stress, anxiety, and isolation. Gather your tribe on MyLifeLine. You are not alone.
  5. You are lovable after cancer. No matter what body parts you are missing, you deserve love just as you are. Cancer tore down my self-esteem, and it took significant effort to build it back up. I am dedicated to personal and professional growth now. Look into your heart, your mind, your spirit. Try fine-tuning your best character traits, like generosity or compassion. Never stop growing and learning. We are not defined by the body.

To wrap up my story–I learned that when one door closes, another opens. Today I am the proud, grateful mother of 11-year-old twin boys. Born with the help of a surrogate mom and an egg donor, my dream finally came true of becoming a parent. Where there is a will, there is a way. Never give up on your dreams!

Looking Good When Your Body Doesn’t Feel It – A Survivor’s Story

This is a guest blog post by Heather Von St. James, a Mesothelioma survivor.

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The beauty business can be wonderful, hard, lovely, and shallow all at once. But this was the career I had chosen, and I loved it. I specialized in cutting and color, but could do pretty much any salon service from pedicures to brow waxing. I had even done a body treatment or two when we were in a pinch.

I loved my job. I loved taking care of people and making them look and feel their best. I had a passion about my career that was contagious – and my clients loved it. I took great pride in having fun and colorful hair, on point makeup and stylish shoes. This was after all, and industry built on appearances.

I was part of this world for over 10 years when the cancer was diagnosed. I found out I had cancer just 3½ months after the birth of my only child. The pregnancy was incredibly easy. I had very little morning sickness, only gained 5 lbs. the whole time. The only problem was I was beyond tired. I had never been pregnant before and had heard fatigue was par for the course, so I didn’t think anything was amiss. Quite the opposite actually.

People always told me how good I looked. They said things like, “If I saw you from the back, I would never know you were even pregnant!” So I took it as a compliment that I hadn’t gained the weight that I thought I would. The only complication was Lily, my daughter ended up being a frank breech. I had to have an emergency C –section, but she came into the world a healthy 8 lbs., 14 oz.

After having Lily, I started losing even more weight, up to 5 lbs. a week. I chalked it up to breastfeeding and working full time. People always commented on how good I was looking, and that being a new mom sure agreed with me. I was the thinnest I had been in years! But the trouble was, I felt terrible. I was exhausted, I was having trouble sleeping, and I was having trouble breathing.

I just thought this is what postpartum was. I didn’t have anything to compare it to, so I just powered through.

Finally after 3 months of feeling worse and worse, and having more troubling symptoms, I went to see my doctor. After a series of scans and tests we had our answer: malignant pleural mesothelioma.

I was in shock. All at once, my world had come to a screeching halt. My life went from being a working mom, to medical appointments and scans. I would spend the next year fighting for my life through surgical intervention to rid my body of the cancer, followed by chemotherapy and radiation.

I was sicker than I had ever been in my life. I made my mind up early, though, that even though I was sick, I was still going to do my best to take care of myself. I figured, you can take the girl out of the salon, but you can’t take the salon out of the girl! Just because I had cancer didn’t mean I was going to stop caring how I looked. I was platinum blonde when I got sick, so I decided to dye my hair a darker brown, closer to my natural color, so it would be easy to deal with over the next few months. I figured it was only a matter of time before I lost it all due to chemo anyway, so why not have fun.

I found out later, that not all chemo causes hair loss, and the type I was getting happened to be one of them, so I never did lose my hair. What was sad, was one of my former co-workers accused me of faking cancer because I didn’t lose my hair. She seriously said that I probably was making everything up because “everyone knows you lose your hair with chemo.” All I could do was laugh and shake my head.

I found that many people said some really crazy things during my cancer battle. People would ask how I felt or how I was doing, and when I said the truth, basically I felt terrible, or was the most sick as I ever had been, I always got the same response. “But you LOOK good.” It was as if looking good made everything ok. And it meant that since I “looked,” good I obviously could not feel as bad as I said.

I began to wonder what I was SUPPOSED to look like… I guess I was supposed to be bald, not wear any make up, spend all my time in pajamas, and moan aloud all the time. I honestly think that is what many people expected, and when they saw me with my hair and makeup done, and dressed in normal clothes, it surprised them. I made every effort during my treatment to make sure I took the time to do those things. The truth of the matter was it made me feel better.

Being a cancer patient, you desperately want any sense of normalcy because everything is so NOT normal… for me? Taking care of myself and my appearance made me feel better. I wore normal clothes, not sweats or pajamas, unless I was in bed. I even got dressed up to go to chemo. I Joked that even though, I might be sick, I’ll be damned if I would look that way!

I was the only person I ever knew who wore red lipstick to get a blood transfusion. My elderly mother-in-law often took me to my chemo appointments, and all the nurses assumed I was there to accompany her for an appointment, not the other way around. I don’t think I’ll ever forget the looks of surprise, replaced by pity when they realized I was the one there for the infusion.

Over the last 10 years, I’ve learned that people don’t say these things to be cruel or unkind, quite the opposite actually. I believe they are trying to encourage, not disparage. I’ve learned to let the comments roll off, and instead of getting upset I try to educate, and I’ve learned myself what not to say to others who have gone through treatment.

I still care about my appearance. I have a shocking white blonde mohawk that has become my trademark. I like to make sure I look nice when I go places, not for other people, but for myself. When I talk to people I don’t know, they are always shocked when I tell them all I’ve been through. My scars are not visible unless I show you where they are.

You can’t tell from my appearance that I have only one lung or only part of a diaphragm. I’ve gained some of the weight back I lost during treatment, so it isn’t obvious what happened to my body as a result of the cancer – which is why when people still say, “Wow! But you LOOK so good!” I just smile and say, “Thank you.”

 

After You Hear It’s Cancer: The Unexpected Journey

This is a guest blog post by John Leifer from After You Hear It’s Cancer. Leifer has spent more than 30 years in the health care industry as a senior health care executive, consultant, academician and writer.

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As the spouse of a radiation oncologist, our dinner table conversations often focus on the trials and tribulations of my wife’s patients. Somehow it seems cathartic for Lori to share her patients’ angst – like a long sigh that carries away the collective stress of watching people struggle with their journeys through cancer. Yet, throughout these discussions, rarely did we discuss the possibility that we, too, might be forced to embark on such a journey. Then came Easter 2013, a day that changed our lives.

Easter is a particular sacred and treasured day for my wife who embraces the message that “the worst thing is not the last thing,” and has tremendous faith in the resurrection. That night, three years ago, I had slipped into bed while Lori took a quick shower. Half asleep by the time she joined me, I was suddenly jolted awake by her quiet sobbing. My normally stoic wife was in distress, and I had no clue as to why.

“I found a two-centimeter lesion in my breast. It’s cancer,” Lori said as though reading a pathology report.

I prayed she was wrong.

We awoke numb the next morning, as if fighting off the remnants of a bad dream. But it was no dream, and Lori soon sprang into action — lining up the requisite diagnostic tests to determine our fateful next steps.

After going through a battery of imaging studies, followed by a biopsy, Lori was diagnosed with early-stage breast cancer – and given the option of breast-conserving surgery (a lumpectomy) followed by radiation or a mastectomy.

Though Lori knew that both treatments provided the same statistical probability of cure, she nonetheless struggled with the decision. I realized, then, that if a physician with 25 years of experience treating cancer patients struggled to make the right treatment decision, how extraordinarily difficult it must be for laypeople.

Lori’s lumpectomy appeared to go exactly as planned. After a few hours, the surgeon came out to inform me that he was confident that he’d “gotten it all,” but was careful to advise that cautious optimism was needed until the pathology reports were back. Tears brimmed in my eyes as I heard the news.

The pathologist was shocked when Lori’s tissue samples arrived in her laboratory, for she and Lori were close colleagues. Not wanting Lori to endure the anxiety-ridden wait for results, she worked late into the day to process the slides. Unfortunately, the news was not good.

Not only were the margins (the point at which the surgeon has stopped excising tissue) not clear of tumor cells, but there appeared to be a second type of cancer in Lori’s breast. Lori would need a mastectomy; the only choice was whether it would be bilateral.

Our journey was suddenly more complex, yet Lori came to a decision with relative speed. Because there was lobular cancer in her breast, which is often opaque to diagnostic imaging tests, she did not want to carry the burden of anxiety wondering if another cancer would appear in her other breast.

Recovery from her bilateral mastectomies and reconstruction was a slow and painful process. We were incredibly grateful that her sister, Janet, a nurse at Duke, flew in to aid with her post-surgical care. It would take months, but eventually my energetic, beautiful wife would re-emerge.

There was one, powerful change, however. Though always compassionate, Lori had acquired a new-found empathy for her patients. The arduous nature of the journey was no longer a concept in her mind…it was something she had embarked upon and was surviving.

Our shared journey was a major impetus for writing After You Hear It’s Cancer: A Guide to Surviving the Difficult Journey Ahead. I wanted to do my part to help make this extraordinarily difficult time in patients’ lives, and the lives of their loved ones, a bit easier. Lori served as my clinical consultant on the book.

Our journey does not stop with the book. Today, we are exploring additional ways to help patients and their loved ones understand the twists and turns of the difficult journey through cancer, and how to make truly informed and collaborative decisions with their physicians that incorporate their personal values.

There are no short-cuts on the journey through cancer, but there are ways to make it more tolerable. Our commitment is to help identify them, and share them with those that must follow this life-changing and often unpredictable path.

John LeiferAbout the author: John Leifer, MAPP, has spent more than 30 years in the health care industry as a senior health care executive, consultant, academician and writer. An outspoken advocate for patients’ rights, he has published widely on the need for patients to receive appropriate, safe, effective care.

Lori Lindstrom Leifer, M.D., is a cancer survivor and Assistant Clinical Professor of Radiation at Oncology at the University of Kansas School of Medicine.

For more information, visit: www.afteryouhearitscancer.com or e-mail jleifer@leifer.com

The Conversation: Supportive Care for Lung Cancer Patients

MyLifeLine.org brings you this resource through a partnership with Helsinn and Patient Empowerment Network.

Meg Maley, RN, BSN, hosts a panel discussion around the topic of supportive care for lung cancer patients. Dr. Eric Roeland, Assistant Clinical Professor of Medicine at UC San Diego, Niki Koesel, MSN, ANP, ACHPN, FPCN, Director of Palliative Care, Carolinas Healthcare System, Levine Cancer Institute, and Randy Broad, a 7-year lung cancer patient, join in the discussion.

The participants discuss supportive vs. palliative care, explaining that palliative care is actually an additional layer of support for patients and families. Discussing palliative care at the time of diagnosis will help the patient learn about all options and will lead to the best quality of life for cancer patients.

The Conversation then turns to the healing vs. curing debate. Niki and Randy both agree that healing is individual and depends greatly on the patient’s situation and perspective.

The panel then discusses the patient experience during treatment for lung cancer, and the challenges involved. Discernible challenges for patients going through treatment, especially chemotherapy, are the fear of hair loss and the onset of nausea.

Niki then talks about cachexia: what it is, and how it can be treated. She further explains how cachexia can be a heavy burden for patients and caregivers, and references several treatment options such as medications, energy conservation therapy, and cognitive behavioral therapy.

The Conversation concludes with all participants agreeing on the importance of communication and shared decision-making with the medical team.

Watch and listen as these esteemed participants discuss topical issues in Supportive Care for Lung Cancer Patients.

The Conversation: Supportive Care for Lung Cancer Patients from Patient Empowerment Network on Vimeo.

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Wellist’s Story

This is a guest blog post by Wellist, an online directory of 3,500+ (and growing) services in Boston.

The moment you or a loved one hears the news, time stops. No matter who you are, getting sick was not part of the plan. We know that with any kind of diagnosis, life can become more complicated. There are the obvious lifestyle complications, like appointments to get to, prescriptions to be filled, and symptoms to be monitored–the things that make up the “medical” part of a diagnosis.

But then there is the impact that being sick and dealing with a diagnosis has on one’s life. Tasks that once were easy, like picking up around the house, cooking a family dinner, or shoveling the steps after another snowy winter, suddenly are overwhelming. The to-do list can pile up, leaving patients and their families feeling flat out exhausted.

Every day, we see people shoulder this incredible burden without enough support. And we also know that person has their own journey, and their own unique needs. This is the reason Wellist, an online directory of 3,500+ (and growing) services in the Boston, exists. We also understand that in times of challenge, finances can be tight. Wellist is completely free to use thanks to our partners, Massachusetts General Hospital Cancer Center, Beth Israel Deaconess Medical Center and Quest Diagnostics.

We help young mothers who have just been diagnosed with an aggressive form of cancer find someone to watch their kids after school. We’ve helped men living alone to find someone to mow the lawn, and we’ve helped daughters who no longer live with their parents to make sure Mom and Dad are eating properly and that the house is kept clean. No matter what your story is, we have solutions to help.

We have spent months working with nurses, clinicians, and social workers from top healthcare providers, as well as patients and families, to create a directory of services to help those who are battling and recovering from illness. We provide recommendations and our users choose what’s helpful to them, whether it’s a financial assistance program to help with bills, or oncology-specific massages. With Wellist, users can set preferences for price range or location, and can then save those to their profile.

In addition to providing this directory, Wellist helps patients and their families find the support they need from people who care about them and want to help in a meaningful way. “I don’t want to ask my friends to clean my house but it’s what I really need,” is a phrase we hear over and over again. Friends and family want to help, but usually don’t know quite what to do. Wellist’s Wellistry, a shareable gift registry, allows patients to make a list of what services would be most helpful and a family member or that patient can share it with others who want to help.

Wellist’s team is deeply dedicated to the mission to make life easier for those undergoing health challenges. Every team member has come from a place where they have experienced the need for Wellist in their own lives. While our services primarily cover the greater Boston area, we are looking forward to partnering with even more healthcare providers, growing our team, and expanding our service range so that we are able to help as many as we can.

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10 Tips for Caregivers

This is a guest blog post by the Cancer Support Community.

A cancer diagnosis can impact your whole world. But what happens when you are also a big part of someone else’s world? Cancer impacts not just the person diagnosed, but their whole network of friends, family members and loved ones can feel the effects as well. This is especially true for the person acting as caregiver. Caregivers to someone with cancer spend an average of 8 hours per day providing care to their loved one. The demands of caregiving depend on several different variables–stage of disease, types of symptoms experienced, functional ability, treatment side effects and more. A caregiver’s response to the cancer diagnosis, treatment and journey itself can be just as important as how the patient responds–making the need for physical, social and emotional support for caregivers extremely important. In honor of National Family Caregiver Awareness Month, here are our top ten tips for caregivers.

  1. Find YOUR support system. When a friend or loved one is diagnosed with cancer, it’s an emotional time. Sometimes it can be difficult to talk with your loved one about your feelings, because you both have so much going on. Many find one of the best ways to cope with stress, uncertainty, and loneliness is to talk to others who share similar experiences. To find your own support system, look to our Affiliate Network or our online support group services.
  2. Gather information. There is truth to the phrase, “Knowledge is power.” There’s no way to completely grasp the ups and downs of a cancer diagnosis and treatment – and you shouldn’t be expected to. Being armed with knowledge may help you accommodate your loved one’s needs and help you know what to expect. To learn more about your loved one’s cancer diagnosis, click here.
  3. Recognize a “new normal.” Patients and caregivers alike report feeling a loss of control after a cancer diagnosis. Many caregivers are asked for advice about medical decisions or managing family finances and/or need to take on new day-to-day chores. It is likely that your tasks as a caregiver will create new routines – after all, you’re taking on a new role in your loved one’s life as well as your own.Maintaining a balance between your loved one’s disease and the daily activities of your own life can be a challenge. It may be helpful to identify the parts of your life that you can still control – such as your own health and relationships. In doing this, you will be able to create a strategy for integrating new routines with old ones. It may also help to acknowledge that your home life, finances, and friendships may change for a period of time. Sometimes the laundry might not get done, or maybe takeout will replace home cooking. Try to manage each day’s priority as it comes. Take a deep breath and realize that the support you provide is priceless.
  4. Relax your mind, recharge your body. It can be easy to feel overwhelmed by the tasks of caregiving. Mini-breaks are an easy way to replenish your energy and lower your stress. Try simple activities like taking a walk around the block or closing your eyes for 10 minutes in a comfortable chair. You are working hard to provide and secure the best care for your loved one. Time spent recharging your mind and body will allow you to avoid depression, major illness or burnout.
  5. Take Comfort in Others. It’s common for many caregivers to feel a loss of personal time over the course of their loved one’s illness. Keep in mind that while you are taking on new and additional responsibilities, you are still allowed a life of your own. Many seasoned caregivers advise that you continue to be involved with your circle of friends and family.
  6. Plan for the Future. A common feeling among caregivers and people with cancer is uncertainty. It’s hard to know what the future holds. While planning may be difficult, it can help. Try to schedule fun activities on days when your loved one is not feeling the side effects of treatment. You can also give yourselves something to look forward to by planning together how you will celebrate the end of treatment, or a portion of treatment.Planning for a future in the long-term is also important. All of us, whether we have been diagnosed with cancer or not, should have in place necessary paperwork such as healthcare agent, power of attorney and a will. You can ask your loved one if he or she needs, or wants, assistance. Having essential paperwork under control will allow you to have peace of mind.
  7. Accept a Helping Hand. It’s okay to have “helpers.” In fact, you may find that learning to let go and to say “YES!” will ease your anxiety and lift your spirits. People often want to chip in, but aren’t quite sure what type of assistance you need. It’s helpful to keep a list of all caregiving tasks, both small and large. That way, when someone asks “Is there anything I can do?” you are able to offer them specific choices.
  8. Be Mindful of YOUR Health. In order to be strong for your loved one, you need to take care of yourself. It’s easy to lose sight of your own health when you’re focused on your loved one. But if your own health is in jeopardy, who will take care of your loved one? Be sure to tend to any physical ailments of your own that arise, – this includes scheduling regular checkups and screenings. And just like your mother told you: eat well and get enough sleep.
  9. Consider Exploring Stress-Management Techniques. Even if you’ve never practiced mind-body exercises before, you may find that meditation, yoga, listening to music or simply breathing deeply will relieve your stress. Mind-body (or stress-reduction) interventions use a variety of techniques to help you relax mentally and physically. Examples include meditation, guided imagery and healing therapies that tap your creative outlets such as art, music or dance. If this interests you, seek out guidance or instruction to help you become your own “expert” on entering into a peaceful, rejuvenated state.
  10. Do What You Can, Admit What You Can’t. No one can do everything. It’s okay to acknowledge your limits. Come to terms with feeling overwhelmed (it will happen) and resolve to be firm when deciding what you can and cannot handle on your own–so that no one faces cancer alone.

Do you have your own tips for being a caregiver? Share your experience and your best tips by becoming a member of our Cancer Experience Registry: Caregivers. Your voice will help us better meet the social and emotional needs of all caregivers.

About the Cancer Support Community: The mission of the Cancer Support Community is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community.  As the largest, professionally led nonprofit network of cancer support worldwide, the Cancer Support Community delivers a comprehensive menu of personalized and essential services including support groups, educational workshops and social activities for the entire family at more than 100 locations and online. To learn more, call the Cancer Support Helpline at 888-793-9355 and check out the CSC blog.

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5 steps to creating new beginnings after cancer

This is a guest blog post by Gina Costa-Goldfarb, breast cancer survivor and Certified Professional Coach. Gina-Costa-Goldfarb-Photo

Step 1: Define what the “new normal” is for you.
Survivors tend to look at their lives in a whole new way. At times, survivors may feel alone because of all of the involvement in their doctor appointments and treatment, or they may feel isolated because of the disease. It is up to you to create what your new normal is. This is a precarious time in your life filled with change, but you have a choice in how you want to create your life going forward.

During this stage we will explore how you want to move forward with relationships, with your career and how you want to integrate that back into your life if you have been absent from work. We will also explore how you want to live your life, how you can create healthier eating habits, exercise, meditation, etc., and what if any internal blocks are holding you back from creating the life that you want to live and what your “new normal” can look like.

Step 2: Follow up and self-care.

Following up for routine check-ups and testing is of utmost importance to maintaining your health. Self-care is just as important as is eating a well-balanced diet, exercising and staying hydrated. Self-care will keep you both mentally and physically fit. What can you do for you today that will make you feel good? Women are so used to doing for others that they often forget to love themselves. Go for a walk, go to the gym, go to a movie, go shopping, meditate, curl up on the couch and read a good book, get your hair and nails done. Get someone else help you, delegate things to others. Any action you can do to reduce stress and overdoing it while giving to yourself is what you need to do. Give up control and let others be responsible too. Diary something to do for yourself every day and add something special once a week. Work at establishing goals for yourself.

Step 3: Live in the Now

Living in the present moment is key to survival and keeping worry and anxiety about recurrence at a distance. In order to do this you need to slow things down a bit and focus on what you are doing in present moment, not the future. Mediate and get connected to yourself, to your spirituality. Deal with your emotions daily, feel the feelings. Experience life. We need to stop the chatter and voices inside our head with relaxation techniques. Live moments in each day instead.

Step 4: Survive to thrive
Living in the now will not only help you to survive, it will allow you to thrive in life. With less fear and worry in your life you will be able to focus on what it is that you want in life. Those of us who were “doers” need to learn how to just “be.”

Step 5: Create New Beginnings
What is your passion? What have you wanted to do all of your life? Looking back at your life pre- diagnosis, what do you want to change in your life and what do you want to keep? What serves you and what doesn’t? The time is now. Your time is now. Why wouldn’t you want to begin creating a vision and taking the steps to live into that place? What would that look like?

About the Author: Gina Costa-Goldfarb is a breast cancer survivor and Certified Professional Coach and Energy Leadership Master Practitioner. She is the founder of New Beginnings Coaching Services, LLC. Gina helps women diagnosed with breast cancer cope, step-by-step, with the emotional and physical challenges they experience, so they gain confidence and feel in control of their life again. You can connect with Gina on her website, Facebook, or email gina@newbeginningswithgina.com.

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The Hairy Truth About Going Bald

This is a guest blog post by MyLifeLine.org member, Joni Hemond. 

I’ve always loved my hair. It is thick and wavy and a nice color. My few strands of gray have multiplied over the years but are still relatively hidden. I can wear it short, long, and any way in between. It is flexible and forgiving and generally looks acceptable, despite the fact that all I do is wash-and-go.

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Joni with her three children.

Knowing my hair is going to fall out completely is a strange thing. Personally I’ve mostly had hair styles that reflect convenience over style, but wonder now that I won’t have it anymore if I should have been bolder with my hair decisions. I’ve become fascinated with the way people choose to style it and color it and take care of it, with the way it can give you a small glimpse into someone’s personality, or make a huge statement.

I also have a new and interesting camaraderie with middle-aged bald or balding men. I study their contours, their scars, their moles, their divets. I wonder about their style choices: Shave all the way? Grow out part of it? Hair replacement? Cover it with a cap? Sunglasses on top of the head? Pair it with hipster eyewear and a leather jacket? As a woman, it’s a little more difficult to incorporate baldness into your personal style. I do have two advantages over my male counterparts, however: 1) mine will grow back and 2) I don’t have the added nuisance of nose, ear, and back hair sprouting up and demanding attention.

There was a radiologist at my medical school who had the strangest way of dealing with his hair loss that I’ve ever encountered. His only remaining hair grew in a half circle on the sides and back. He chose to grow out the above his left ear. And I mean he GREW IT OUT. Like three feet. He took that wall of side-hair and wrapped it around the top of his head like a turban. This was all well-and-good indoors, or on a calm, sunny day. My friend and I happened to walk out of the hospital behind him on a day that was very windy. Oh, boy. That flap of hair blew straight up to the sky despite his best efforts to contain it. Clever, but not an option for me (because, of course, I will have no side-hair to grow out).

A few years ago, my daughter Isabel, who was nine at the time, decided she wanted to grow her hair to donate it. I thought it would be a fun experience to go through together, so I did it with her. On Mother’s Day 2013, Isabel donated ten inches and I donated fourteen. Mine had to be cut off in two separate pony tails because it was so thick. Oh, the irony.

The treatment I’m on makes you lose your hair, pretty predictably by day 18 of chemo. In the counseling I received from my oncology team, I was told once it starts it doesn’t thin much, but rather just falls out within two to three days. My hair loss has not occurred in this typical pattern. I am going to share my shedding experience (so far), and I will give you a warning that my honesty may be a little bit too much information for some. But it’s funny. And I know you’re curious. Here goes.

Something odd happens when my sisters and I talk to each other on the phone. Our voices on the other end of the line trigger us to have to use the bathroom. It is a phenomenon I’ve coined “SistaLax.” Well, I was talking to my littlest sis on Day 15 of treatment (on speaker phone with her and her friend, no less), when SistaLax hit. I was still chatting as I sat down on the toilet so it took me a second to register the collection of hair on the edge of the seat. I thought, “Why in the world is there hair all over…?—ah, right, I’m losing my hair. But, wait, here?!?!” I informed my sis and her friend, and we laughed like crazy. Then I yanked the hair on my head and sure enough, out came a fistful. That was within 24 hours of my second chemo. And for the last five days, it has continued to fall out, one fistful after the other, with no clear end in sight even as I write this.

Several friends and acquaintances who have been through chemo shaved their heads once the hair started falling out, which was an empowering experience for them. I think it is a brave and beautiful thing to take control and own it like that. But I wanted to experience the hair loss, strand by strand. It is a reminder to me that this treatment process is raw and gut-wrenching and painful and sometimes ugly. It is a fight. I am battling something that would kill me if didn’t go in, fists up, and that is made evident by every strand that is lost. I study the tiny follicles, little buds at the end of the hair. I notice the texture and color and softness. I weave my fingers through what has fallen onto the countertop before I throw it in the trash.

Losing hair hurts. My scalp feels tender the way it does when you’ve had your hair in a tight pony for a long time. It hasn’t come out in clumps but instead has thinned all over, particularly at the front and sides. I currently have the worst style of all styles: a mullet with a receding hair line (complete with my widow’s peak, which is going strong). At first I kept a Buff around my head just to contain the shedding, and now I wear it to cover up the whole rather hideous look. I’ve kept my three kids involved with every step of the process. They each cut a lock of my hair before this all started, and have helped me brush it and pull it out, and massage it when it aches. Lucien, my five-year-old, has been the most involved…he even lays out paper towels on the side of the tub of for me to lay the fallen hair on when I take a shower!

It’s not fun, but it ain’t all bad. My oncologist put me in touch with someone who grew his hair out for four years in honor of his mother, who passed away from breast cancer. His friends donated enough money to have a wig made from it, of which I am the lucky recipient. In a few minutes I’m heading to a party my fabulous friends and family are having so I can get me some stylin’ head coverings. I can’t wait to give lots of “port hugs.” And the little things? No shaving, no tangles, no blowing drying. And a cheap, pain-free Brazilian.

So what have I learned about the way I want to be bald? I’m going to remember the process. And I’m going to rock it: bare or wigged, scarved or with a hat, the cute with the not-so-pretty. Sure, my hair will never be the same; then again, neither will I.

About the Author: Joni is a happily married 41-year-old mom to 3 children (ages 6, 10, 12). She works as an academic pediatrician and feels that her job treating patients and teaching future physicians is a privilege. Outside of work, Joni loves running, writing, strategy board games, traveling, hiking, snowboarding, and hanging with family and friends. She was diagnosed with Stage 3 breast cancer in March 2014. In addition to fighting with chemo, surgery, and radiation, she’s given cancer an extra kick with exercise, a positive attitude, and writing about her experience on MyLifeLine.org

What have I learned about the way I want to be bald?  I’m going to rock it: bare or wigged, scarved or with a hat, the cute with the not-so-pretty. Sure, my hair will never be the same; then again, neither will I.

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Writing Cancer

This is a guest blog post by MyLifeLine.org member, Joni Hemond.

It’s evening, and twilight is fading to dimness outside the large dusty windows of the high school classroom. They file in, one by one. You have Edward, an architect wearing a black half-turtle neck who is dreaming of writing the ultimate book of historical architecture. Cynthia sits pin straight and a bit out of place in the beat-up desk, several sharpened pencils lying in a neat row inform of her, a gray-bunned grandmother anxious get feedback on how best to write a memoir. Then there’s Johan, a rotund middle-aged accountant who would be better-suited wearing Norse Viking clothing than his baggy jeans and golf shirt, flashing a chipped-toothed grin as he talks about his love for sci-fi. Pony-tailed Jennifer, fresh out of college, can’t wait to get started on her romance novel. And then there’s Joni, doctor-turned-cancer-patient, mother of three, ready to take the journey she documented in a series blogs and turn it into something more.

What do all these people, of varied backgrounds and ages and interests, have in common? They love to write. There are so many avenues of expression for a myriad of different emotions, and each person has their preferred medium. What is special about writing is the way it is shared. In the setting of a blog, it serves a dual role as a way to process a challenging experience and to keep loved ones informed of progress.

My writing on MyLifeLine.org evolved over the course of my journey with breast cancer diagnosis and treatment. At first it was more informative: I got this procedure and this is what it felt like. Here are the symptoms of chemotherapy. This is what medications I’m on. As I progressed, and the day-to-day contained less new information, I began to focus on how my experience related to others going through similar challenges, and how my diagnosis impacted those around me. Further still, I have begun to focus and ruminate on “bigger picture” ideas like the human condition and what it means to share our lives together on this beautiful Earth.

For me, the most important aspect is the way writing has helped me keep my sense of humor during a time that could have been characterized by frustration and sickness and self-pity. Of utmost importance to a writer are his/her readers. The last thing I want is to have my Guests get an alert that I have written a new blog and think, “Here we go. Another deep, dark, and depressing day in the life of a cancer patient.” I began to observe my world in a different way. I highlighted the mundane, strove to find the funny, and attempted to have a message of hope even during my lowest times. (Admittedly, it isn’t often much of a stretch to get a laugh when breasts are involved!)

My 14 months of treatment is nearly done, but my relationship with others through writing has hopefully just begun. Based on the words of encouragement and positive feedback I have received about my blog posts, I know that in a world where we are often separated from loved ones across miles and oceans—and even for those who I am able to see every day—writing links us together in a way few other forms of expression can.

I am entering the world of “survivorship,” and I am optimistic that cancer treatment will soon be in my past. But I am grateful that through my writing I have captured my time with cancer for unlimited years of self-reflection and inspiration.

About the Author: Joni is a happily married 41-year-old mom to 3 children (ages 6, 10, 12). She works as an academic pediatrician and feels that her job treating patients and teaching future physicians is a privilege. Outside of work, Joni loves running, writing, strategy board games, traveling, hiking, snowboarding, and hanging with family and friends. She was diagnosed with Stage 3 breast cancer in March 2014. In addition to fighting with chemo, surgery, and radiation, she’s given cancer an extra kick with exercise, a positive attitude, and writing about her experience on MyLifeLine.org.

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It’s Good To Be Blue

This is a guest blog post by the Colon Cancer Alliance in honor of Colon Cancer Awareness Month.

National Colon Cancer Awareness Month is the time of year when the country unites and takes to the streets to raise awareness by dressing in blue, celebrating survivors, honoring those passed and encouraging others to get screened for colon cancer, the third most commonly diagnosed cancer and the second leading cause of cancer death in men and women combined in the U.S.

Being proactive with health is one way to stay on the offensive with this disease. However, getting screened for colon cancer is something that many avoid doing or even talking about.

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Colon Cancer Alliance Month reminds us to get checked! Colon cancer is preventable and treatable if caught early.

While American Cancer Society screening guidelines call for men and women at average risk for the disease to begin colon screening at age 50, 23 million Americans in that age group are not getting screened as recommended, increasing their risk of being diagnosed with colon cancer at a late stage when it is much harder to treat. Truth be told, people in their 20’s, 30’s and 40’s are getting diagnosed at increasing rates making it increasingly important to get checked if you have a family history of colon cancer or are having signs and symptoms.

Before colon cancer develops, a polyp—or non-cancerous growth—usually appears on the inner lining of the colon or rectum. The identification and removal of these polyps, through routine screenings, can effectively prevent colon cancer from ever forming. Because most polyps and early-stage cancers cause no symptoms, adherence to routine screenings is critical to cancer detection.

Colonoscopy is the most comprehensive procedure to detect and remove cancerous and precancerous lesions. However, despite its critical importance, some are unwilling to undergo colonoscopy because the procedure is invasive and requires bowel preparation, including a clear liquid diet and laxatives.

Recently, another option approved by the FDA called Cologuard gives those who are unwilling or unable to undergo colonoscopy an accurate, noninvasive screening test they can take in the privacy of their own home. What makes Cologuard different from other noninvasive colon cancer screening tests is that it is designed to analyze and detect both altered DNA and blood biomarkers in the stool known to be associated with cancer and precancers. Cologuard is approved for use by men and women, 50 years of age and older, who are at average risk for colon cancer.

Colon cancer is preventable and treatable if caught early. Here at the Colon Cancer Alliance, we are passionate about creating a world free of colon cancer where education, early detection and treatment lead to survivorship for all. At the end of the day, it doesn’t matter which screening option you choose—after all, the best test is one that gets done—so don’t put it off any longer, now is the time to call your physician and get screened.