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The Stupid Cancer Show: Perspectives on Life after Cancer

Screen shot 2013-10-15 at 1.53.47 PMHere at the Oncofertility Consortium, we’re huge fans – both personally and professionally – of Matthew Zachary, the force behind Stupid Cancer; the nation’s largest support community of young adult survivors of cancer.  Created in 2004 (first as Steps for Living, then transitioning into I’m Too Young For This! Cancer Foundation, and now Stupid Cancer), it has grown into a powerhouse resource for young cancer survivors; giving them a platform for their issues, creating a community of young adult cancer patients and survivors, and putting them in the national spotlight.

One of Stupid Cancer‘s wide-reaching programs, is The Stupid Cancer Show; an award-winning international talk show that gives a voice to millions of children, teens, and adults affected by cancer.  Their September 30, 2013 show invited listeners to learn more about Adult Survivors of Childhood Cancer.  I don’t want to give too much away – because the show is definitely worth listening to – but you will meet Michelle Whitehead-Hastings, a young wife and mother currently battling stage-4 colon cancer.  She discusses the road to her diagnosis, treatment, remission, and recurrence and how she communicates with her young children about her cancer.  Up next, Colleen Cira, a survivor of pediatric cancer, discusses long-term effects of treatment, including fertility issues, and outlines her experience with programs offered at Northwestern.  From there, you will be given insight into the clinical side of fertility preservation and cancer survivorship from Northwestern’s Fertility Preservation Patient Navigator, Kristin Smith, and Clinical Nurse Specialist, Karen Kinahan, RN, from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University‘s comprehensive follow-up STAR-Program for adult survivors of childhood cancer.  Both women are instrumental in assisting our patients through the cancer continuum.

The unique stories and perspectives shared during The Stupid Cancer Show allows listeners to learn about the challenges faced by patients diagnosed with cancer, those who have transitioned into survivorship, and the clinicians and hospital staff that are with them at each step.  Click here to listen to The Stupid Cancer Show highlighting the Oncofertility Consortium‘s own Kristin Smith and Karen Kinahan, RN.

After listening to The Stupid Cancer Show, I invite you to view Virtual Grand Rounds by Karen Kinahan, RN titled Adult Survivors of Childhood Cancer and Fertility.  For questions regarding fertility preservation options in cancer patients, please contact the FERTline at (312) 503-3378.

After Cancer: Surrogacy As a Fertility Option

By Jen Rachman

At age 26, I was living my life, self-sufficient, secure and independent. I took care of myself physically and emotionally. Life was nearly perfect, until the routine trip to the gynecologist that wound up saving my life.

When you hear the words, “you have cancer,” there is truly no way to be prepared to absorb all that comes with it. My now unstable life became filled with terms like prognosis, oncologist, surgery, treatment and chemo.  Suddenly, my secure sense of self became unraveled and presented me with a new identity – cancer patient.

My oncologists’ main goal was to rid me of cancer as quickly as possible. The recommended course of action when diagnosed with ovarian cancer is to have a complete hysterectomy.  I was only 26 therefore the idea of parenthood wasn’t even on my radar yet.  But suddenly the idea of losing my ability to bear children was becoming a harsh reality.  Not willing to relinquish the option of one day having children, I stressed to my doctors how important it was for them to make every attempt at preserving my fertility. Over the course of 7-months, I endured three surgeries, and six rounds of chemotherapy.  Cancer took my hair, put my body in menopause, left me feeling twice my age, and made me infertile.

As time passed further from my date of diagnosis and it became less scary to invest in the idea of leading a longer, healthy life, my thoughts about future began to change.  My then boyfriend and I were married in 2005, and after several years we became comfortable exploring the idea of having a family.  I had come to accept the loss of my fertility and began exploring the options.  I reached out to my oncologist and other survivors I saw as support about surrogacy and adoption.  It quickly became apparent that there was a lack of information about surrogacy.

We met with an organization called Circle Surrogacy, and immediately felt comfortable trusting them with guiding us through this process.  The entire experience felt “right,” as I believe this is the way we were intended to become a family.  Our surrogate is truly an amazing woman who we felt connected to from the start.  The day our boy was born was truly the best day of my life.  It was as if all the struggle and loss caused by cancer had been undone.  Or perhaps more so, solidified the reason for the journey. Through my son’s birth, I realized my experience with cancer and surrogacy brought me a greater sense of purpose. Utilizing my 12-years experience as a social worker, I now coordinate surrogacy outreach to the cancer community.

For more information about your fertility options, please visit the Oncofertility Consortium patient webpage HERE. To learn more about Circle Surrogacy, please click HERE.

Join Us for the 20th Annual Cancer Survivors’ Celebration & Walk on June 2nd!

2012 (19th Annual) Cancer Survivors' Celebration & WalkCancer survivors, their families and friends, and the Northwestern community that supports them
, will come together on National Cancer Survivors Day, June 2nd, to walk and celebrate the 20th anniversary of the Robert H. Lurie Cancer Center’s signature event, the Annual Cancer Survivors’ Celebration & Walk. The event brings people affected by cancer together in Grant Park to honor cancer survivors and celebrate the strides being made in treatment and research. Come out and join us for this memorable event in Chicago celebrating survivors with a picnic, kids’ corner, t-shirts, music, entertainment, the Dedication Wall, and more.

The Walk is about three miles, but registrants can walk any distance they’d like and return to Grant Park whenever they choose to. In fact, you don’t even have to walk, you can just come out and enjoy the picnic, entertainment, and help celebrate! In commemoration of its 20th year, the Annual Cancer Survivors’ Celebration & Walk has added an optional timed 5K Run along the lake to mark the occasion. The 5K Run is limited to 500 participants, so make sure you get over to registration and secure your spot! Use discount code NURUN and save $15 when you register for the 5K before May 29th!

Donations are not required to take part in this community awareness event honoring cancer survivors; however, contributions to support research and education at the Lurie Cancer Center are optional, and can be made here. Registration is $15 per person in advance and $25 on the day of the Walk, beginning at 7 a.m. There is no charge for children under 2 years old. Registration for the 5K Run is $50 per person, which includes the Walk Fee (see 5K Run page for details).

We hope you’ll join us in Grant Park on June 2nd as we celebrate the 20th anniversary of the nation’s largest National Cancer Survivors Day celebration with more than 3,500 survivors, families, and friends. See you there!

Chicago Tribune Talks Fertility Preservation with Oncofertility Consortium Members

By Cathryn Smeyers

A recent article in the Chicago Tribune entitled “New programs give hope to young cancer patients about bearing children,” discusses the field of oncofertility and how it can positively impact the lives of female cancer patients.

The article opens with the story of Jenna Benn, an Oncofertility Consortium favorite who was diagnosed with a form of lymphoma in her late twenties.  For Benn, the possibility that she could lose her fertility from life-saving cancer treatment was of great concern.  Fortunately, as Northwestern is the home base for the Oncofertility Consortium, Benn was in good hands and immediately introduced to Kristin Smith, the hospital’s Fertility Preservation Patient Navigator.  Smith outlined the primary fertility-sparing options that exist for young women facing cancer diagnosis: embryo banking, egg banking, ovarian tissue banking, or surgical procedures to remove or protect the ovaries.  Benn ultimately opted for egg banking and had her own eggs frozen before undergoing six rounds of intensive chemotherapy.

As the article goes onto discuss, though, unlike Benn, not all female cancer patients are made aware of the potential threat to their fertility and the choices available to them.  Dr. Teresa Woodruff coined the term “oncofertility” in 2006, and it is still a relatively young field.  While great strides have been made in availing patients of fertility preservation options, challenges still exist.  For example, there are many doctors who feel that it’s important to stay focused on saving a patient’s life and not necessarily her fertility.  Many women who are informed of their options are ultimately deterred by the cost of fertility preservation measures, which can run between $10,000-$15,000 and are not often covered by insurance.  Also, ethical questions arise with the question of how to handle unused embryos.

Everyday, the Oncofertility Consortium and our partners are working to overcome these hurdles.  We spread the word through our research, blogs, iphone app, and advocacy work.  After her struggle with cancer and fertility preservation, Benn is now a regular contributor to the Oncofertility Consortium and was our featured guest at last year’s gala.  Living in remission and now newly engaged, Benn runs her own cancer support group called Twist out Cancer, which “leverages social media to help survivors and their loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment.”  Make sure to check out their upcoming event Brushes with Cancer, an evening celebrating survivorship and hope through art, music and storytelling, on Wednesday April 17th at Floating World Gallery in Chicago.  Tickets and additional details can be found here.

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.

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