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CNN Health Focuses on Imerman Angels and Cancer Advocacy

Recently, one of our friends and cancer advocates, Jonny Imerman, was featured on CNN Health, in an article entitled “Pairing ‘Angels’ with Cancer Patients,” showcasing the organization he began 10 years ago, Imerman Angels. Imerman Angels is an organization founded in 2003 that carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with their experience.

In 2001, at 26 years old, Imerman was diagnosed with testicular cancer. He underwent an aggressive chemotherapy regime that lasted 5 months only to have the cancer return one year later, this time in his spine. Throughout his cancer treatment, he would walk the halls of the hospital and talk with other young cancer survivors, hoping to make a connection through their shared experience, and offer hope and support. Imerman says, “It was instant friendship. You’re not talking surface level. You’re talking about life and death. My goal was to get in there and motivate patients so that they wanted to jump out of their chemo bed and literally start swinging at this thing.”

Once Imerman was deemed “cancer free,” he was motivated to start engaging the young adult cancer community, and connect patients with other patients or survivors experiencing a similar health crisis. Imerman saw the value in providing a service enabling a cancer fighter to talk to a cancer survivor, who not only had beaten the same type of cancer, but who also was the same age and gender as the fighter. He started reaching out to doctors and hospitals and was referred to other cancer survivors. He collected information from patients, networked with other patients and survivors, and became a cancer matchmaker.

Today, a decade later, Imerman Angels has a database of more than 4,000 survivor mentors. The group tries to connect people living in the same city who can meet in person, but its database also extends overseas, and some pairs communicate via phone and Skype. On average, the group creates five to seven pairs a day and has made more than 8,000 matches in more than 65 countries.

Although Imerman Angels works with all age groups, the majority of their “angels” are between 18-40, a demographic often underrepresented in the cancer care community. According to Jenna Benn, a young woman diagnosed with a rare form of lymphoma when she was 29, “Imerman Angels is incredible in the sense that they’re able to pair you up with someone that looks just like you and that gets it and that can tell you it’s going to be OK. All of a sudden, your reality doesn’t seem so strange.”

Read more about Jonny Imerman and Imerman Angels at CNN Health in, “Pairing ‘Angels’ with Cancer Patients.”

“Life Interrupted,” Shares the Unique Challenges of a Young Adult with Cancer

Suleika Jaouad is a 24-year-old writer from Saratoga Springs, N.Y. Her column, “Life, Interrupted,” appears weekly in the New York Times. Suleika chronicles her experience as a young adult with cancer and the unique challenges she faces such as infertility, psychosocial issues, and survivorship.

I first came across her blog several months ago when it came to my inbox as a “Google Alert.” Suleika had written a post about being a young cancer patient facing infertility. She wrote, “Leukemia is an emergency, and oncologists are the first responders: They are trained to beat cancer; everything else must take a back seat. It was only after I asked about fertility that the doctors told me about the available options.” Faced with the harsh reality that her cancer may leave her infertile, she chose to undergo fertility preservation.

The decision to preserve her fertility was not made in haste. Her chronicle of the decision to bank her eggs drew me in and I began to follow her blog regularly. At the time, Suleika only 22, wrote about how being diagnosed with an adult disease ( acute myeloid leukemia – a form of cancer usually reserved for the elderly) thrust her into an adult world she wasn’t quite ready to exist in yet. Still feeling like a child and reliant on her parents in so many ways (emotional, financial, etc…), she was suddenly forced to live her life “out of sequence.”

Yet, deciding to preserve her fertility wasn’t the hardest decision she had to weigh after her initial diagnosis.  Moreover, exactly which method was going to be the most effective and least disruptive to her present and future life, proved to be the most difficult decision to make. She writes, “I looked across the table at my boyfriend. We had met only eight months earlier, and here we were, considering the benefits of freezing embryos with his sperm (the option with the greater chance of success) versus freezing only my eggs. It was awkward territory.” Suleika put off the decision for as long as possible, but when pressed by her medical team, within minutes she had made the decision to bank only her eggs.

Suleika went to her appointments at the fertility clinic with her boyfriend, feeling out of place among the other women, wearing her college sweatshirt with the caption, “Class of 2010.” Obviously older than her, the other woman were nonetheless all there for the same reason – hoping to create life, one way or another.

Read more “Life Interrupted,” here.

 

Teal Diva Shares Her Story of Cancer, Fertility, and Resilience

As part of our guest blog series, the Oncofertility Consortium would like to introduce our readers to Shannon Routh, and her organization for young survivors of ovarian and gynecologic cancers, Teal Diva, founded in 2009. Below is a post she wrote about her experience with cancer, fertility and finding the “new normal” in her life.

By Shannon Routh

Remember the MASH (Mansion-Apartment-Shack-House) game you used to play when you were a little girl, to predict what your life would be like when you grew up? The game where you choose your husband, how many kids you will have, where you will live, etc.  It’s funny how the words cancer, infertility or hysterectomy were never a part of my outcome.   My story ends a little differently than I had hoped…dreamed.

My husband and I were married just shy of 3 years when we got the news…you have ovarian cancer.  A few months prior to being diagnosed, I had abdominal pain.  I went to my gynecologist.  After reviewing my ultrasound, she noticed a cyst the size of a grapefruit on my ovary.  She referred me to a Gynecologic Oncologist.  As he prepped us for surgery, he told us we had 3 scenarios: 1-remove the cyst, 2- cancer, removal of cyst and ovary, and 3-cancer, hysterectomy, etc, etc, etc.  After surgery, I woke up asking if he did a hysterectomy and I was told he did not.  Oh my goodness…I was so relieved, so thankful.  The day I was released from the hospital is the day I learned I had stage IIa Clear Cell Carcanoma. I was 32.  And because of my age and cancer type, he wanted to be certain prior to taking both ovaries.  Wait…does that mean?…yep.  A 2nd surgery was scheduled.  We went home…devastated.  In an effort to remain positive, I thought we could harvest eggs and pursue other options.  We went in for a consultation a few days before the radical hysterectomy and asked hopeful questions about our options, but we were told my cancer type feeds off of hormones. Unfortunately, you will not be able to bare children.  So not only do I have cancer, I can’t have kids.  WOW…talk about depressing.  But I didn’t have time to feel sorry for myself because I had to prepare for the hardest fight of my life.

My world was turned upside down by having cancer and learning I would never bare children, but I have found a new normal…one I didn’t plan for.  Throughout my journey, I needed desperately to connect with someone. So, one night I started writing and before I knew it, Teal Diva was born.   The mission of Teal Diva is to celebrate life!  As survivors of ovarian and other gynecological cancers, we understand the reason to celebrate every sunrise.  We are bound by our experiences and challenges and form a sorority which we never intended to join.  The primary beneficiary of our fundraising efforts are research programs seeking reliable screening tests for gynecologic cancers.

*To learn more about Teal Diva and other community resources for cancer survivors, please visit our Patients webpage.

Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors

What does empowerment mean to you? Does it mean giving someone the authority or power to do something… because that’s what you’ll find if you look it up?  The word is not a new one – it originated around the 17th century and the meaning has remained largely the same. People have a need for a word that makes them feel that they are or are about to become more in control of their destinies, and this is especially true when faced with a cancer diagnosis at a young age. On Saturday, April 14th from 10:00AM-4:00PM, the Robert H. Lurie Comprehensive Cancer Center will be hosting an event entitled, Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors.

At this inaugural event, young adult and adolescent cancer survivors will learn strategies and information to help them embrace life after treatment with confidence. Get EmPOWERed is an opportunity for everyone under the age of 40 who has been treated for cancer, including childhood cancer survivors who are currently 13 years of age or older, to share experiences and receive support. Family members, friends and caregivers are encouraged to attend as well!

Get EmPOWERed will cover a lot of ground so there is something for everyone.  Topics that will be explored include: talking about cancer with important people in your life; coordinating follow-up medical care; managing stress and other cancer-related emotions; making good choices about exercise and nutrition; addressing insurance, financial, legal and other practical concerns; exploring options for building a family after cancer with fertility preservation patient navigator, Kristin Smith; managing pain and other effects of cancer; and helping caregivers to care for themselves.

The event is being held at the LaSalle Power Company in Chicago and there is a small registration fee for participants, which includes all the workshops and admission to a VIP after-party event at Gilda’s Club Chicago.  This is a great event for the young cancer community so if you that sounds like you or someone you know, please come out and take part in this great event! For more information on Get EmPOWERed: Life After Cancer for Adolescent & Young Adult Survivors, including registration, please click here.

Survivors: A New Magazine for Breast Cancer Survivors

As we have covered in past blogs,  young people account for about 10% of all cancer patients.  As science, research and advocacy evolve, more young people are SURVIVING cancer and going on to lead healthy and productive lives. Nonetheless, young cancer survivors are in a league of their own when it comes to survivorship issues, (i.e., late-term effects of cancer treatment, fertility, heart & brain health, etc…). In an effort to address and celebrate breast cancer survivorship, particularly in women diagnosed at a young age, a new quarterly magazine was born: Survivors: A Magazine for Inspiration, Hope, Healing and More.

In November 2011, the premier issue of Survivors: A Magazine for inspiration, Hope, Healing and More was published. According to the editors, the goal of the magazine is to “highlight positive and inspiring breast cancer survivor stories – about people who have turned their diagnosis and situation into possibilities and opportunities.” The most significant aspect of this new magazine lies not only in its mission, but also in its content – the magazine spotlights grass roots programs and organizations allowing them to get the kind of exposure they often deserve and need, but don’t often get.

Throughout the first issue are stories from women, many still in their reproductive years, who are involved with the Breast Cancer Awareness Body Painting Project (BCAPP). BCAPP is a form of art therapy for breast cancer survivor showcasing women of all different races and ethnicities with their chests/torso painted, aiming to demonstrate the beauty and inspiration in survivorship by presenting a positive body image of breast cancer survivors. If you have not already, you should definitely take a look at these profound and brave images of women who have been diagnosed with and survived, breast cancer.  If you need a little inspiration, you will be hard pressed not to find it here.

Their first issue of Survivors: A Magazine for Inspiration, Hope, Healing and More can be downloaded for free so take a look at it here and if you love it, they’ve already released their second issue for purchase.  If you’re interested in contributing breast cancer survivor stories or other related content, please send them an email at: survivors@inkspotdesigns.com.

 

John Green’s “Fault in Our Stars” and AYA Cancer in the Media

For all those young adult readers out there and even for those who are in no way eligible for that category anymore, John Green has just released his 4th fiction book, The Fault in Our Stars, starring two, young cancer stricken protagonists. Though the topic is a little grim, Green composes the novel into a surprisingly heartening story. Although fictitious, Green worked as a student chaplain in a children’s hospital several years ago and knows a thing or two about real-life young people living with or through cancer.

A little about the book: Hazel is sixteen-year-old girl living with terminal cancer and carting around an oxygen tank when she meets Augustus, another young cancer survivor who lost his leg during his bout with osteosarcoma, at her kids-with-cancer support group. The two are kindred spirits, sharing an irreverent sense of humor and wit, and end up falling in love in spite of Hazel’s prognosis. Green’s book reflects on the universal questions we can all relate to – How will I be remembered? Will my life, and my death, have meaning? What do I want to do with my life, now, in this moment?

Green recently sat down for a segment of Weekend Edition on National Public Radio (NPR) and discussed his book as well as his experience spending time with young cancer patients. Green talked about wanting to write a book that didn’t feature teenagers as “wide eyed” with the answers to life’s existential questions. He said, “The truth is that teenagers are teenagers, whether they’re sick or well. And whether they’re going to exit adolescence or not, they still have to go through this.” This in particular, makes Green’s book come off as authentic and true-to-life because cancer or not, kids still want to be kids and live in that moment, albeit those with a cancer diagnosis have a more pronounced understanding of their mortality.

Through the recent attention being paid to the adolescent and young adult (AYA) cancer community in the media via movies, (50/50), organizations (i2Y, SAMFund) and now Green’s latest book, The Fault in Our Stars, the public can get a better understanding of the specific needs of young people living with or after a cancer diagnosis (fertility, survivorship, psychosocial care). To read more about or to purchase a copy of The Fault in Our Stars, please click here.

Bonnie J. Addario Lung Cancer Foundation: Jog for Jill

Those of you in the cancer community may have heard the name Jill Costello before. We first learned about her through her best friend and cancer advocate, Darby Anderson, on an impromptu visit to the Oncofertility Consortium. Jill has been featured on ESPN, written about in Sports Illustrated, interviewed on NPR and she even has her own entry in Wikipedia. Jill was an athlete, a 4.0 student, and an activist among other things. She was an athlete by nature, and an activist by choice. At the age of 21, Jill was diagnosed with stage 4-lung cancer – a healthy and active young woman with no history of smoking or genetic pre-disposition to cancer.

There is no cancer that is better than another, but lung cancer often has discouraging statistics. Less than 2% of individuals diagnosed with lung cancer at stage 4 survive, and many associate lung cancer with smoking, assigning an unfair stigma for many diagnosed with the disease. As a result of this disease’s reputation (that it’s self-induced), and due to the low survival rate, it rarely attracts big research money. In the last 40 years, the survival rate has largely remained the same.

As a testament to who she was as a person, Jill was brave and positive throughout her yearlong battle with cancer. She remained active on the rowing team and successfully led her team to a Pac-10 victory as the coxswain for UC Berkeley’s women’s crew. She finished college with a 4.0 G.P.A. and spearheaded the first Jog for Jill, a 5k walk/run for the Bonnie J. Addario Lung Cancer Foundation on February 7, 2010 in Berkley, CA. Jog for Jill raised over $45,000 dollars and drew 1,000 participants making it the largest fundraiser ever for lung cancer at that time.

A little over one year after her initial diagnosis, Jill passed away leaving behind a legacy of activism and fundraising in an effort to, in Jill’s own words,  “Beat Lung Cancer Big Time!”  Beginning March 11, 2012, the Jog for Jill Walk/Run series kicks off in Berkeley, CA and will be touring the country to raise money for lung cancer research. The Bonnie J. Addario Lung Cancer Foundation will be hosting walk/runs in 17 different cities, so please visit the Jog for Jill webpage for details on how you can participate.

Cancer & Fertility Preservation: How I Lost My Uterus and Found My Voice

A newly released memoir from cancer survivor, Michelle Whitlock, delves into her experiences with HPV, cervical cancer, fertility preservation and love in a book that you will read from start to finish in one sitting. How I Lost My Uterus and Found My Voice is an honest and (very) candid account of what her 20s looked like, replete with all the things you might expect out of a 20 something: falling in love, travel, finding oneself, heartbreak, etc… Now throw in a whole lot of cancer, embryo banking, chemo, radiation, incontinence and a play by play of “getting your groove” back after your vagina has done a total 180 from what it once was, and you have a very unique story.

At the age of 26, Michelle found out that she had HPV, a sexually transmitted virus infecting 50-60% of sexually active people. Shortly after finding this out, she received the biggest blow of her life – she was diagnosed with invasive cervical cancer.   From that point forward, Michelle made it her mission to ensure her treatment plan was something that worked for her, meaning not only was she going to do everything in her power to beat the cancer, but she was also going to fight just as hard to preserve her fertility for her “maybe babies” one day. At a time when little information was offered regarding fertility preservation, Michelle had to take the reins into her own hands and become her best advocate. Unsure of whether or not she even wanted children, she was not going to let cancer take her options away.

After successfully beating cancer the first time around and avoiding a total hysterectomy by electing to undergo an experimental surgery to eradicate the disease, she was diagnosed with the same cancer just a few years later.  She was left with no other option except chemo, radiation and a total hysterectomy, but as a result of her research and commitment to finding the best care possible, she found a doctor who understood the importance of her fertility just as much as she did. Thus, her “maybe babies” came to fruition and were put on ice for a date… TBD.

I don’t want to giveaway any more of her story, but this is a must read for cancer patients, survivors, caregivers or anyone that wants to know what cancer, fertility issues, and sexuality really look like. I highly recommend it for its rawness and the openness with which she shares her experience. Nothing is sugar-coated in these pages – Michelle talks about things that will make you blush from time to time, but they’re the things no one talks about, and should be.  It’s an inspirational story that reads like a conversation with your girlfriends so if you haven’t already, please pick up a copy of How I Lost My Uterus and Found My Voice, by Michelle Whitlock, and see what I have been raving about!

Astrue v. Capato: The Supreme Court Covers Oncofertility

This March, the United States Supreme Court will hear oral arguments about its first case on oncofertility. The case involves the Capato couple, a husband and wife from Florida who dealt with Mr. Capato’s diagnosis of esophageal cancer.  Prior to beginning cancer treatment, the Capato’s learned that Mr. Capato’s chemotherapy could destroy his fertility and, as such, choose to preserve his fertility by banking sperm.  Despite the cancer treatment, Mr. Capato passed away from his disease. Mrs. Capato decided to continue their wishes as a couple and use Mr. Capato’s banked sperm to have their children through in vitro fertilization.

In 2003, 18 months after the death of her husband, Mrs. Capato gave birth to twins. As a widowed mother of twins, Mrs. Capato applied for Social Security survivors’ benefits. According to the Social Security Administration website, these benefits are intended to help the family of a worker who passes away and that 98 of every 100 children are eligible for benefits if a working parent dies.

However, Mrs. Capato’s application for her children to receive survivors’ benefits was denied. According to the Social Security Administration, the Capato twins are not actually Mr. Capato’s children since they were conceived after his death. This first decision was based, in part, on a Florida law that states that a child cannot receive inheritance from a parent who was dead at the time of conception. Mrs. Capato appealed this decision twice and was denied both times. Finally, the Third Circuit decided on the Capato twins’ behalf stating that the term “child” refers to the biological offspring of Mr. Capato, which they are.

The case that is going to the Supreme Court is called Astrue v. Capato as the Social Security Administration, is commissioned by Michael J. Astrue. Social Security Administration has a policy of denying survivor benefits when a child is conceived after a parent’s death and they are asking for guidance for the court on when to decide when these children should be beneficiaries.  We look forward to hearing more about this case in the next few months and will keep our readers updated. More insights into the legal aspects of oncofertility are available from some of the researchers at the Oncofertility Consortium:

Giuliana Rancic and Oncofertility

Our undergraduate oncofertility reporter, Meredith Wise, brings us the first of two blogs on Giuliana Rancic and her current experiences with infertility and breast cancer. Mrs. Rancic is using her celebrity to educate the world on these important issues, which gives us all something to reflect upon during this holiday season.

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By Meredith Wise—Every day across the country, women diagnosed with cancer must face decisions regarding their treatment and its potential effect on their fertility. But when a celebrity faces the same decisions, suddenly the idea of oncofertility becomes a hot button issue.

On October 17, Giuliana Rancic, a television host for E! News, announced that she had been diagnosed with breast cancer. Rancic, who had been receiving IVF treatment in an attempt to have a baby, had a mammogram at her doctor’s suggestion. Rancic’s mammogram showed a tumor in her breast, and within a week she underwent a double lumpectomy.

Rancic had recently had a miscarriage following a round of IVF, and she credits the baby she lost with saving her life. Without the miscarriage, she would not have thought to schedule a mammogram.

Rancic and husband Bill have made no attempt to conceal her health issues from the public since the beginning of her IVF treatments, and her latest announcement is no different. On Monday, December 5, Rancic announced that her next step in treatment was to have a bilateral mastectomy, which she underwent on December 13.

According to an interview in People magazine, Rancic’s desire to have children, put on hold by her cancer diagnosis, is one reason that she has decided to proceed with the surgery. Rancic hopes that the surgery will allow her to beat her breast cancer once and for all, and that it will prevent her from having to undergo chemotherapy or radiation that could induce early menopause or interfere with future fertility treatments.

Rather than hide from the press, Rancic has used her celebrity status to put her health problems to good work for the public. She and her husband have appeared on numerous talk shows, answered questions for magazines, and have even Tweeted their appreciation of their fans’ support and prayers.

Rancic’s public battles with infertility and breast cancer serve to increase awareness and mobilize the public in the fight to find methods of fertility preservation. Rancic has chosen to undergo a dramatic surgery because she does not want other cancer treatments to further damage her chances of being a parent.

Rancic initially resisted getting a mammogram, believing that at 37, she was too young to have breast cancer. Now she hopes that by sharing her experience, she can remind others of the importance of early detection.

Hopefully, Rancic’s willingness to include her fans in her battles will not only raise awareness for breast cancer, but will also encourage the public to support finding methods of fertility preservation despite having to undergo cancer treatment. Rancic’s experience can raise awareness of oncofertility so that in the future, other women’s best hope against infertility will not be a surgery as radical as a double mastectomy.

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