Category Archives: Cancer Patients & Stories

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!

Finding Hope through a Clinical Trial

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

Elisa was in her early 30s when she was diagnosed with breast cancer. In the eight years since then she has been through surgery, radiation and six different chemotherapies. Early this year, she learned her cancer was progressing, and she was running out of options. Elisa lives in Chile. A friend, who is a cancer specialist, told her about an immunotherapy trial in Chicago for which she might be a candidate. Elisa and her mother made the long journey from South America to Illinois to be part of this innovative study. Right now, she is doing well. While the future may remain uncertain, being part of this trial has given her hope.

Bill is a successful lawyer, a husband and father. Twelve years ago, he was diagnosed and treated for a rare brain tumor. He went on with his life, until the tumor returned in October. Standard therapy offered little chance for a good or lasting response. His doctors in Chicago suggested that he go to New York for a clinical trial with a new targeted therapy. Now, he still practices law, takes care of his family and travels every few weeks for his innovative therapy.

What can we learn from these two stories?

First, by joining a clinical trial, both Elisa and Bill were treated with new therapies that would otherwise not have been available to them. Like many people with advanced or difficult to treat tumors, they knew that their best option was to consider joining a clinical trial. That put them at the forefront of cancer research. Both knew when they made the decision to leave their homes and travel to another cancer center that there was no guarantee that they would respond to the treatment. They made conscious choices to be a part of something that might make a difference for them, and for other people facing similar cancers.

It takes courage and belief to join a clinical trial.  Many cancer patients bring those characteristics to their experience. From the moment a person hears the diagnosis of cancer, he or she enters a strange new world.  This new world requires making decisions about treatment and care. For many, that may include the opportunity to join a clinical trial, yet another unknown territory. The hope that new treatments bring is a beacon of light in that world.

Elisa and Bill represent the people facing cancer who actively seek information about the treatments available for their cancer, who work as partners with their doctors and health care teams to make the best decisions about their care. They both made choices that involved dislocation, uncertainty and loss. They made these choices because the clinical trial represented something more important. They chose hope–hope for longer, better lives.  They chose hope for the future, for themselves, the people who love them and everyone who ever faces cancer. Hope is what inspires courage and belief. Hope drives clinical trials.

To learn more about Clinical Trials, check out the Cancer Support Community’s new Frankly Speaking about Cancer Clinical Trials program at www.CancerSupportCommunity.org/ClinicalTrials.

The Truth About Clinical Trials

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Clinical trials offer a chance to receive investigational medicines or procedures that experts think might improve the treatment of cancer. This important option is not limited to people who have run out of choices. In fact, there may be clinical trials for every stage of disease in dozens of cancer types.

Concern: I don’t want to be a guinea pig for an experimental treatment.
The Truth: Cancer clinical trials are developed with high medical and ethical standards, and participants are treated with care and with respect for their rights.

Concern: I’m afraid I might receive a sugar pill or no treatment at all.
The Truth: Cancer clinical trials rarely use placebo alone if an effective treatment is available; doing so is unethical.

Concern: Cancer clinical trials are only for people with no other treatment options.
The Truth: Trials can study everything from prevention to early- and late-stage treatment, and they may be an option at any point after your diagnosis.

Concern: I’m worried that I won’t receive quality care in a cancer clinical trial.
The Truth: Many procedures are in place to help you receive quality care in a cancer clinical trial.

Concern: People might access private information about me if I participate.
The Truth: In nearly all cancer clinical trials, patients are identified by codes so that their privacy is protected throughout and after the study.

Concern: I’m afraid that my health insurance will not help with the costs of a cancer clinical trial.
The Truth: Many costs are covered by insurance companies and the study sponsor, and financial support is often available to help with other expenses; talk to your doctor to understand what costs you could be responsible for.

Concern: Informed consent only protects researchers and doctors, not patients.
The Truth: Informed consent is a full explanation of the trial that includes a statement that the study involves research and is voluntary, and explanations of the possible risks, the possible benefits, how your medical information may be used, and more. Informed consent does not require you to give up your right to protection if the medical team is negligent or does something wrong.

Concern: I’m afraid that once I join a cancer clinical trial, there’s no way out.
The Truth: You have the right to refuse treatment in a cancer clinical trial or to stop treatment at any time without penalty

Learn more about clinical trials.

 

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

5 Cancer Prevention Tips

This content is originally from the Prevent Cancer Foundation .

More than 1.6 million Americans will be diagnosed with cancer this year and more than 589,000 will die. However, research shows that up to 50 percent of cancer cases and deaths are preventable.

In February, we honor National Cancer Prevention Month. Here are steps to prevent cancer from the Prevent Cancer Foundation:

  1. Don’t Use Tobacco. The use of tobacco products has been linked to many types of cancer, including lung, colorectal, breast, throat, cervical, bladder, mouth and esophageal. It’s never too late to quit. About 90 percent of all lung cancer is related to smoking. Non-smokers who are exposed to secondhand smoke are also at risk for lung cancer and other respiratory conditions.
  2. Protect your skin from the sun. Skin cancer is the most common and most preventable cancer in the United States. More than 3.5 million skin cancers in over two million people are diagnosed annually. Exposure to the sun’s ultraviolet radiation causes most skin cancer. Be sure to use adequate sun protection year-round. Never use indoor tanning beds.
  3. Eat a healthy diet. Eat lots of fruits, vegetables, beans and whole grains. Limit red meat and cut out processed meats. It is also important to limit alcohol consumption because alcohol can increase your risk for liver, colorectal and breast cancers. If you drink alcohol, have no more than two drinks a day if you are a man or one drink a day if you are a woman.
  4. Maintain a healthy weight and be physically active. Getting at least 30 minutes of physical activity each day can make a big difference in your general health and well-being. Inactivity and obesity have been linked to breast and colorectal cancer, and there is also some evidence of a link to lung and pancreatic cancer. Add exercise to your routine to reduce stress, increase energy, boost your immune system, control your weight and reduce your risk for cancer.
  5. Know your family medical history and get regular cancer screenings. Talk to your health care professional about cancer screening. Some tests can help detect cancer early, when treatment is more likely to be successful, and some can also detect precancerous conditions before they become cancer. While screening has been proven to save lives, screening guidelines aren’t always “one size fits all.”

To see more cancer prevention tips from the Prevent Cancer Foundation, click here.

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About Prevent Cancer Foundation: 
The mission of the Prevent Cancer Foundation is saving lives through cancer prevention and early detection. Their vision is to Stop Cancer Before It Starts! The Prevent Cancer Foundation advocates and supports the prevention and early detection of cancer through Research, Education, Advocacy and Community Outreach. To learn more, visit

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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A Breast Cancer Survivor’s Story

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Veronica, MyLifeLine.org Member and Breast Cancer Survivor

Veronica’s doctor found a small lump during an annual physical and assured her it was probably nothing to worry about. She was told to have an ultrasound and biopsy done, just to be certain.

“I was a little alarmed but I just didn’t think cancer fit me,” Veronica recalled. “It was hard to process. I was dumbfounded that cancer could happen to me.”

On the way home from learning of her breast cancer diagnosis, Veronica passed a church sign that read, “Do not fear for I am with you.” She relied on her faith to bring her strength and comfort during her cancer journey.

“Even though I was prepared spiritually for a challenge like this and I was trusting God through the whole thing, I had to come to terms with what I was facing,” Veronica reflected. “You have to realize that this could be the end. This could be a death sentence and I had to be willing to take that if that’s where God wanted me to go.”

Veronica’s treatment began with a mastectomy and reconstruction. Her oncologist didn’t recommend chemotherapy or radiation treatment so Veronica eventually ended up taking supplements designed from her bloodwork instead.

“My body has always been sensitive. I was terrified that if I got chemo or radiation it would kill me when tiny tumor wasn’t a big deal,” she remembered. “I went with the supplements for a year and I’ve been fine ever since.”

Writing was an important outlet for Veronica during her cancer journey and continues to be today. She started blogging on her MyLifeLine.org site and found the responses to be so positive that she was inspired to write a book about her experience.

“I learned that I do not have to perform to be loved,” Veronica reflected. “My family and friends were so attentive and concerned and so kind during that time. The whole process of learning that people were there for me when I was at my most vulnerable was surprising.”

Veronica’s book is titled It’s Okay To Be Me: A Journey to God’s Heart by Way of Cancer.

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Those That Were, Those That Are, Those That Will No Longer Be

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Joni, MyLifeLine.org member and breast cancer survivor

This is a guest blog post by Joni, a MyLifeLine.org member and breast cancer survivor. She shares her feelings on the eve of her mastectomy.

On the eve of my surgery, I have been saying goodbye. And not just to my breasts, although the loss of a body part/parts has definitely sent my thoughts whirling.

Life is a series of goodbyes. It is a litany of things lost, and others gained. I sometimes grieve the loss of my children at the ages they used to be: snuggling newborns, feisty toddlers, curious preschoolers; I miss their chubby, dimpled hands and soft baby hair and their wondrous discoveries. Yet I couldn’t be happier with who they are at this moment. And the thought of all the years left, stretching out before us with promise, brings me immense joy. I also miss: the various stages of my life-gone-by, the places I used to live, my family every time we have to part, the loved ones who have departed this earth. And yes, I will miss my “girls.”

The breasts that were:
My first breast-memory is when I was two years old. My preschool teacher was trying to comfort me as I cried after my mom dropped me off. With my head bowed, I stared directly into her two giant, pendulous boobies. My separation anxiety dissipated immediately and I ran to play with my friends!

When my own little buds starting coming in at about age ten, I was horrified. At the time, my favorite past-time was football with the neighborhood boys, and I was surprised and disappointed that my body had decided it was time to make me a “woman.” I put warm ace bandages around my chest in the hopes that I would never have to wear a bra. Hmmph.

Despite all my best efforts, I grew into a healthy C/D cup. I was actually quite happy with that, and they served me well, until I got pregnant. Pregnancy had the same effect on my boobs that Christmas had on the Grinch’s heart. Well, almost. His heart grew three sizes, my boobs grew four. And then there was breastfeeding. I was far from being a natural. For weeks, every feed was a struggle and my youngest had such a hard suck he left my nipple hanging by a thread. But once it clicked, I was so grateful that I stuck with breastfeeding. It still amazes me that I was able to produce the nourishment that fed my babies.

The best word to describe what was left after three pregnancies and a sum total of thirty-six months of breastfeeding? Deflation. “Tube socks with rocks on the bottom,” as my mom is fond of saying. My daughter once asked me why my boobs touched my belly button. To be honest, until this year, I had become a bit indifferent to them. I thought that the worst thing about them was that they were not too attractive. Hmmph.

The breasts that are:
I just spent a week with my sister and her newborn baby, and was reminded how beautiful that bond is between mother and child. The time I spent with the two of them during this magical period was remarkably healing for me. It was a reminder that no matter how difficult things get, there is always something wonderful waiting just around the corner. I loved every moment of that week: his sweet baby smell, his cozy body swaddled against my chest, his little piglet noises when he was ready to feed, even his dirty diapers. I loved watching my sister as a momma, a role that fits her perfectly. Seeing her breastfeed made me grateful I was able to do the same, despite the fact that my breast rebelled on me. And rebel it did.

Although it has shrunk considerably, I am still living with a palpable cancer. The tumor is a demonstration in immortality, a daily reminder of biology-gone-wrong and of the fact that if I didn’t get treated it would eventually kill me. I can’t say I’m sorry to see it go, but there is something sad about having a large piece of your womanhood go with it.

The breasts that will no longer be:
Tomorrow I head in for my surgery. On the left, I will be getting a modified radical mastectomy, which means they will not only remove all of the breast tissue and nipple, but every single one of my axillary (underarm) lymph nodes, the soft tissue under my arm, and potentially some muscle; on the right I will get a standard mastectomy. I should be in the hospital for one night and then I will be back in the care of my fantastic loved ones.

Tonight I’m saying goodbye. To cancer. To life before this moment. To my two friends who passed away on my last day of chemotherapy. To the person I was before this wild experience. And yes, to my breasts/boobs/knockers/ladies/melons/milkcans/hooters/moo-moos. Until we meet again…

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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Stephanie’s Metastatic Breast Cancer Story

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Stephanie, MyLifeLine.org Member

Stephanie’s life with metastatic breast cancer is unique. She was first diagnosed in 1991 and has been living creatively with it ever since.

Prior to her diagnosis, Stephanie lived a cancer-proof lifestyle. She was involved in natural medicine for many years and even worked in a natural foods store. A rare genetic disorder and an abundance of health issues throughout her life made her predisposed to cancer. Stephanie originally noticed a chain of lumps in her left breast that she said was hard to ignore.

When she was diagnosed with cancer Stephanie was shocked, but instantly adopted a take charge attitude that’s helped her throughout the years.

She reflected, “I think now 20 something years into it I have this incredible sense of wonder, like ‘Why am I still alive, when so many people I’ve met through cancer aren’t. What am I here for?’”

Stephanie tried many different treatments throughout the years, but said she hasn’t done as much chemotherapy as one might think. “I’ve done a lot of alternative treatment. In the conventional realm, I’ve done a lot of surgery and hormonal therapy,” she recalled.

Stephanie said cancer changed the landscape of her life.

“I went from working to not working. I went from partnered to not partnered. I went from low middle income to very, very low income. I went from physically fit to being disabled. There have just been so many changes. I went from being afraid of death and dying – to not,” she reflected.

Stephanie emphasized the importance of discovering who you are when you receive a cancer diagnosis. “Find out who you are. Make good choices that are consistent with that and find good allies in the medical world and in your personal life.”

She has also learned the importance of having good people in her life. Stephanie received help from many people to stay as independent as possible throughout the years.

“I recognize how much I need good people. A lot of them have been here all throughout and new people have come in,” Stephanie reflected. “I’ve developed many good friendships while living with cancer.”

MyLifeLine.org has been an outlet for Stephanie to communicate her feelings through her writing and to stay connected to friends, family and even strangers who’ve found her site.

“For me it is a way to condense or consolidate my feelings and thinkings about my experience so I can share it with a lot of people without having to hunt them down,” Stephanie said. “I’m very grateful to stay connected with so many good people.”

Read more about Stephanie’s inspirational story by visiting her MyLifeLine.org personal site.

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Humor with Tumor: A Lymphoma Survivor’s Story

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Dan, Lymphoma Survivor

Dan was an Olympic-quality athlete and active in triathlons, road races and half marathons. His doctor once said to him, “you’re the healthiest guy I know.”

He began feeling stomach pains and nausea while running road races and decided to get examined by his doctor. Dan was told it was nothing, but after hearing lymphoma survivor and former winner of the Survivor TV show, Ethan Zohn speak weeks later, he thought his symptoms were similar.

Dan decided to visit a new doctor and insisted on more testing. He was in a Target parking lot when he got the call; it was lymphoma. When Dan walked in the house to tell his wife the news she was quiet and he thought she looked guilty.

“I thought she ran over my Derek Jeter baseball,” Dan recalled with a laugh. “I looked at her and I said ‘you’re pregnant’ and she said ‘yes’ and we both started crying. We were stunned.” They had been trying to start a family.

Chemotherapy infusions started nine days later. “I was very at peace with the disease,” Dan reflected. “I wasn’t worried about dying; I was worried about not living. I wondered how it was going to cramp my lifestyle.”

Dan completed six rounds of chemotherapy. He and his wife kept a sense of humor throughout their experience, that Dan called ‘Humor with Tumor.’ He was on his sixth round of chemo while she was five months pregnant which led to some interesting coincidences, like sharing a bottle of anti-nausea medication; his from chemo, hers from pregnancy. When Dan finished chemotherapy he had to gain 15 pounds, while his wife gained 15 pounds from the baby. “My wife and I have never laughed so much,” he recalled.

The pregnancy was inspiration for Dan to beat his lymphoma. “I was confident that I was going to live and this miracle baby kept me going,” he said.

Dan used writing on MyLifeLine.org as a therapeutic outlet during his experience. “I wrote for no one but myself,” he reflected. “It was such a key part of my journey and hopefully my success story. It was an afterthought that someone would actually read it.”

He received support from a number of people; coworkers, fellow cancer survivors, and friends and family. Dan was also supported by a mentor through Imerman Angels. Although he had a lot of support throughout his journey, Dan also had to learn not to judge people who said nothing about his diagnosis. “Instead of thinking of the people who didn’t call, think of the people who did,” Dan said.

It was also important to Dan that his supporters stay positive and follow through when they offered help. “So many people use the phrase ‘I’m there for you if you need anything,’ but acting upon that is different. If you offer to do something for someone who has cancer, do it. That really builds a connection,” Dan advised.

Dan is now cancer-free with a healthy baby girl named Miles, named after the miles he and his wife had been through. “I’m going to look at the baby and say, ‘have I got a story for you,” he reflected.

Dan continues to share his inspiring story through speaking engagements and on his website, Humor with Tumor.