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CATEGORIES [ SURVIVORSHIP, YOUNG ADULTS ]

The other option: Surrogacy after cancer

BY GUEST BLOGGER | MARCH 26, 2014

Jen Rachman

At age 26, I was on my own, self-sufficient, secure and independent. I was already a few years into building my career as an adolescent therapist; a job that well suited me. I had my own apartment, and was about to move in with my boyfriend of several years. I took care of myself physically and emotionally. Life was pretty 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. My doctors overwhelmed me with choices about what course of action to take. Suddenly, my secure sense of self became unraveled and presented me with a new identity – cancer patient. My oncologists' (who are wonderful) 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.

Being only 26, the idea of parenthood wasn't even on my radar yet. But suddenly I felt forced to think about my fertility and my options. I was then hit with a double whammy: the idea that my cancer might render me infertile. I stressed to my doctors that while clearly the primary focus is to rid myself of cancer; I wanted them to make every attempt at preserving my fertility.

Over the course of seven months, I endured three surgeries and six rounds of chemotherapy. The treatment took my hair, put my body in menopause, and left me feeling twice my age. Unfortunately, the doctors weren't able to save my ovaries. I recovered and slowly acclimated to my new normal – survivor.

As I moved further away from my date of diagnosis, I became more accepting of my life as a survivor and it became less scary to invest in the idea of leading a longer, healthy life. My then boyfriend and I were married in 2005, and after several years were comfortable exploring the idea of having a family. I had come to terms with the loss of my fertility and began exploring my options to become a parent. I reached out to my oncologist and my supports in the cancer community about surrogacy and adoption.

I feared that with adoption, I might be discriminated against due to my cancer history and therefore it felt safer to me to explore the world of surrogacy. I also liked the idea that though our child might not be genetically mine; they could still be connected to my husband. As we researched, it quickly became apparent that there was a lack of information about surrogacy.

We met with a few agencies and decided on Circle Surrogacy in guiding us through this process. We signed our contract with them and moved on to the matching process. Within four months of meeting our surrogate, we were expecting our son. 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. Going into the experience, I had some anxiety about feeling envious or jealousy toward our surrogate as she was able to bring our child into this world; something that I couldn't do. I remember feeling surprised that I didn't feel this way toward her at all. As we were awaiting the arrival of our son, I felt humbled and grateful that she was doing this for us.

The day our son was born was truly the most amazing day of my life. It was as if all the struggle, loss and upset caused by cancer had been undone, or perhaps more so, solidified the reason for the journey.

As I reflected on the experience, I remained troubled by the idea that there was little information in the cancer community about surrogacy. I began exploring ways to get information about this amazing way to become a parent after cancer to survivors. I am fortunate to have made this a career goal and work now as an outreach coordinator to educate others about surrogacy.

Though being a cancer survivor is membership to a club I never wanted; I wouldn't say that cancer was the worst thing that happened to me. How could that be when it has brought so much to my life both personally and professionally?

Jen Rachman is a social worker from New York City. She is a 10-year ovarian cancer survivor having been diagnosed at age 26 and a parent through surrogacy. She is currently working as an outreach coordinator for Circle Surrogacy to educate survivors about this family building option after cancer.

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CATEGORIES [ SURVIVORSHIP, YOUNG ADULTS ]

So much to celebrate

BY GUEST BLOGGER | MARCH 25, 2014

Rachel Baumgartner Lozano

Life has changed a lot for me since nominating my nurse, Tish Mullen, who became a finalist in the first Extraordinary Healer Award contest in 2007. From my essay, "My Own Fairy Godmother Nurse":

"...I was extremely sick and in the hospital for most of the second semester of my senior year of high school. Well, when prom came around, it was really touch-and-go whether I would be in the hospital or not. Because of Tish, I was not in the hospital, got to attend prom, stayed out late, and all of this without my ever-present I.V. backpack. This was quite a feat!

She came over right before I got ready and removed my I.V. and I.V. backpack as part of getting ready (sort of a substitute for doing my hair since there was none). I put on my flowing royal blue gown and was whisked off as a princess for the evening--putting the fact that I was going into an intense life-threatening stem cell transplant in a week in the back of my mind.

At about 4 in the morning, I arrived home from the after-festivities and called Tish, as I had been instructed to do. She came over and safely put the I.V. back in like it had never left.

This is a small example of the type of person Tish is--caring, selfless, and trying to help pediatric oncology patients with all of her resources..."

After the Extraordinary Healer contest, Tish did another overly generous thing for me. She transformed my mother's wedding dress into a custom dress for my wedding! This year, I am celebrating my six-year anniversary with Gabe Lozano, the man I took as my date to that awards ceremony in 2007.

I am also very excited to celebrate 10 years this May with no evidence of cancer. I'm still deciding how I may want to honor this milestone.

Last year, I completed a dual master's program in art therapy and counseling. I achieved my goal of becoming an art therapist, inspired by a woman who was my therapist during my cancer treatment. It was a long road as I had been in treatment on and off for so many years.

Recently, I began working in a residential facility for children and teens dealing with emotional and behavioral issues. The children inspire me so much every day, and I feel blessed to be there.

Combining my love for art therapy with helping others with cancer has led me to the opportunity of facilitating workshops for adults and children with cancer using art as the means of expression. I'm now helping plan a local young adult conference for people living with cancer this summer and will lead a session on art therapy.

I have continued to do inspirational speaking, which has taken me around the country and even to Europe. I have enjoyed meeting amazing people through all these experiences.

Although I still deal with many long-term side effects, I make the most of it, as I'd rather deal with them than the alternative. I'm even challenging myself to train with a program called Cancer to 5K to see how much I can push my body. It seems that if I'm busy with life, then I don't have much time to think about the lingering side effects.

As I reflect back on my experiences with CURE's Extraordinary Healer contest, getting the chance to honor such an amazing nurse who did so much for me has definitely been a highlight in my journey. I continue to see Tish occasionally, and she continues making the lives of children with cancer better and brighter. I hope to be more like her!

Rachel Lozano is an art therapist, artist and inspirational speaker. She is a three-time young adult survivor of Askin's tumor. Statistically, she had a 0 percent chance of survival the third time, but in May will celebrate 10 years of no sign of cancer. Feel free to contact her through her Facebook page, Rachel Lozano: Inspirational Speaker.

Editor's note: Nominate your nurse for CURE's 2014 Extraordinary Healer Award at curemagazine.com/healeraward. Deadline March 28, 2014.

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CATEGORIES [ YOUNG ADULTS ]

My time at CURE

BY GUEST BLOGGER | AUGUST 19, 2013

Jennifer Nassar
Words cannot describe how emotional I am that my internship at CUREis at an end. But hold on, this isn't a farewell blog.

Yes, I will be leaving to start graduate school at the University of North Texas where I will be pursuing a Masters in journalism. No, I'm not done with CURE; at least that's what I hope.

Since my full-time role is up, I would like to share with you a little about what I've learned the past 10 weeks.

I definitely think it's safe to say that my knowledge of cancer has gone up just a tad. I have more of an idea of what cancer is now than when I started at CURE.

One important thing I learned is that cancer doesn't have rules. It's a free game. Anything can happen to anyone at anytime for no apparent reason. Also, if your race, age or other characteristic gives you a low risk of cancer, it doesn't necessarily mean you're immune to it; something important I learned from speaking with Lindsay Giannobile.

[Blog: Listen to your body]

Now, I'll talk about a few of the interesting projects I worked on at my time here. Some were very interesting, and even a bit concerning.

One significant project I worked on was the patient guide on metastatic breast cancer due out later this year. Another subject I found eye-opening was about how infertility is a side effect of chemotherapy or radiation therapy. One of my final journalism projects during my undergrad study at Ole Miss was on a story I did of a couple I went to church with that did four in vitro fertilization attempts before they were able to conceive. Before that project, I didn't realize what a hardship it was for women unable to get pregnant naturally. I can only imagine what that must be like for women undergoing cancer treatment, something I've learned since I've been here.

[Blog: Surrogacy: Becoming a parent after cancer]

Oh, and one of my favorite assignments was on sexual dysfunction, a side effect of prostate cancer treatment. This will be featured in a prostate cancer article coming up later this year. I read about everything from erections to penis pumps. Yes, I know this is very common in prostate cancer patients and needs to be discussed, but yikes! My mom called me that day and asked how work went. I told her, "I read way too much about the penis."

Then there were those touching stories; stories about caregivers, how the little things made the biggest difference, determination and acceptance. It was those stories that encouraged me to look for hope in negative situations.

The list goes on and on.

Now for the CURE team. They are some of the smartest, funniest, most determined people I've ever had the pleasure of working with. For the first time in my life, I can honestly say that I like everyone I work with. Leaving them is definitely the hardest part of ending my internship.

I'm hoping after I'm done with school, I will continue in the path of health and science; whether it is in writing, public relations or marketing.

I still have a lot to learn and a lot to say, so it's safe to say that you will be seeing me around. Goodbye...but not really.

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CATEGORIES [ YOUNG ADULTS, BREAST CANCER ]

Listen to your body

BY GUEST BLOGGER | AUGUST 13, 2013

Jennifer Nassar

Too young to date, too young to wear make-up, too young to dress like that, too young to get married, too young to see an R-rated movie; any of those ring a bell? Now let's say you were told you were too young for cancer.

Lindsay Giannobile says you're never too young for anything in the world of cancer; anything is possible. She is proof of that. Her long road to becoming a mom with metastatic breast cancer wasn't her only struggle with cancer. In fact, she had struggles even before her initial diagnosis.

[Surrogacy: Becoming a parent after cancer]

In 2009, after completing a half marathon, Lindsay discovered a lump in her breast during a self-exam. "It was exactly what they say breast cancer feels like; a small hard rock," she says.

Lindsay immediately went to get it looked at, and a "quick ultrasound" was performed. The doctor told her it was nothing and, at 27, she was too young and active for breast cancer.

About 5 percent of breast cancers are diagnosed in women younger than 40, but just because something is rare, doesn't mean it's impossible.

Lindsay was told to come back if anything changes. She wasn't satisfied, but kept an eye on it.

Four months later, Lindsay discovers another lump in the same breast, and went back to the same facility to be examined again. She told the doctor, "I don't feel right about this."

Again, only an ultrasound was performed. No mammogram, no biopsy.

"They literally told me 'Lindsay, you can't keep coming back here. You're only 27, this isn't cancer. It's nothing to worry about'," Lindsay says. They told her to come back in a year if the lumps were still there.

"I felt like I did everything I could do, since I had the lumps checked out twice in a few months. I thought 'If a doctor is telling me nothing, clearly it's nothing and I'm overreacting.' At the time, I didn't think to go get a second opinion, and I really wish I had," she says.

Yes, women can get non-cancerous lumps, but a biopsy is the only way to rule out that a lump is cancerous.

Steven Sugarman, a medical breast oncologist at Memorial Sloan-Kettering Cancer Center in Commack, Long Island, who was not involved in Lindsay's care, encourages patients to seek a second opinion if they feel their physician isn't taking their concerns seriously. It's also important to look at "reputable sources" for information and advice, he says.

It wasn't until a year later that Lindsay and her husband, Tony, decided to get a second opinion. This time, Lindsay went to the James Cancer Hospital at The Ohio State University Medical Center. Within a week, ultrasounds, biopsies and mammograms were performed.

"We got a pathology report that had cancer written all over it," Lindsay says. Lindsay had stage 3 HER2-positive breast cancer, and within a year, the cancer spread to her bones.

Even if you're not a healthcare professional, it's perfectly normal to question a doctor. Lindsay has learned that since you know your body better than anyone, it's important to fight for yourself. "Be your own advocate," she says.

That doesn't mean that anything unusual is automatically cancer. It may be something else, or it may in fact be nothing--something people who have successfully been treated for cancer must frequently consider. When every little ache or cough brings up a fear of recurrence, the physician should respond to each worry with understanding.

"The role of the oncologist in caring for a very concerned patient is to listen carefully to the patient's complaint and order the appropriate tests to determine if the problem is a significant one that requires a specific treatment," says Sugarman.

"If the complaint turns out, after full evaluation, not to be serious, then the physician should prescribe the best plan, give the patient instructions on what changes to look for that would require further investigation, and provide words of reassurance and comfort to the patient."

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CATEGORIES [ FEATURED, YOUNG ADULTS, BREAST CANCER ]

What's your cancer slogan?

BY GUEST BLOGGER | JULY 17, 2013

Carrie Corey
We've all seen cancer slogans on t-shirts, buttons and baseball caps. If you've received a cancer diagnosis, odds are good you've also heard them from your family and friends.

My first go-round with breast cancer, I wore my hot pink Cancer Sucks t-shirt with pride to my chemo treatments. A few years later, life is more challenging with my metastatic diagnosis and trying to live One Day at a Time.

Two weeks ago, I attended my uncle's funeral; after the service, we were traveling to MD Anderson for a PET scan and doctor's visit. During the service, I was looking at Uncle Bill's children, grandchildren and great-grandson.

"Hmmm.....let's see....if I was 31 when Henry (my son) was born, I'll be 36 when he starts kindergarten. If I'm 49 when he graduates high school, how many years until I could be a grandma?"

There I was, sitting second pew, when a familiar dark cloud slithered into my thoughts. "Will I live long enough to meet my grandchildren?"

My mom will tell you no one knows how much time they have; she could get hit by a bus tomorrow. While that may be true, some of us are standing in the middle of the road, making us more likely to get hit by a bus than the average person. Most people assume they'll live a long and healthy life, but when you're in my boat, it takes concerted effort to make that assumption.

It's been almost a year and a half since I was first deemed incurable. Henry was only a few weeks old and completely dependent on us, but I was the one that needed him. Even when the dark thoughts felt all consuming, I had to Put One Foot in Front of the Other and go fix him a bottle! He continues to give me purpose daily, making it impossible for me to hide under the covers.

My goal is to Enjoy Life in the Now, which is much easier said than done. Most days I choose to keep busy with being a wife and mom – balancing trips to the grocery store and play dates, with oncologist appointments and medicine side effects. I am still responding to my current medication, giving me 12 weeks until the next trip to Houston. Until then, we'll be enjoying summertime in the backyard and trying to stay cool in the Texas heat, just like a "normal" family would.

From now on, when the black cloud sneaks into my thoughts, I am going to follow Henry's lead. At 18 months old, my son doesn't look at the big picture or know what he'll be doing next year or even this afternoon. Every morning, Henry wakes up smiling and ready to tackle the day by running around like a wild man, terrorizing the dogs and trying to jump off the back of the couch.

I can't think of a better example of Live for Today, can you?

Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.

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CATEGORIES [ FEATURED, GENERAL, YOUNG ADULTS, BREAST CANCER ]

Surrogacy: Becoming a parent after cancer

BY GUEST BLOGGER | JULY 11, 2013

Jennifer Nassar
In 2010, Lindsay and Tony Giannobile returned from a vacation in Italy, their last "hurrah" before starting a family, but the life-changing news they received wasn't what they were planning for.

At 28 years old, Lindsay received a diagnosis of stage 3 HER2-positive breast cancer. Listening to Lindsay talk about her struggles and determination to not let a cancer diagnosis stop her from becoming a mother, I was inspired. Her story could give other cancer patients and survivors hope of having or continuing to have a family.

"It was our dream to have a family," Lindsay says. Unfortunately, like many other young adults with a cancer diagnosis, Lindsay learned infertility was a risk with her treatment.

From what I've learned, not all patients are given upfront information about potential fertility risks before therapy. If I had treatment and learned, after it was too late, that I could've done something to be able to have children of my own one day, I would feel denied the right and ability to have biological children.

With chemotherapy, the possibility of infertility may depend on age, type of drug and drug dose. Ifosfamide, chlorambucil and cyclophosphamide are a few drugs that can damage eggs. High doses of radiation therapy can also lead to premature menopause by destroying eggs in the ovaries. Even radiation not aimed at the reproductive organs can still cause damage by bouncing rays inside the body. Several options are available for women who want to plan for a family after treatment, including egg or embryo freezing, using an egg donor, surrogacy and adoption, to name a few.

[Read "What to Expect When You're Not Expecting"]

The couple chose to freeze embryos before Lindsay started chemotherapy in late 2010 with the hope that she might be able to carry them after her year-long treatment of chemotherapy, radiation and surgery.

"We're very blessed that I had babies on the brain," she says. "That really was our only chance at the time."

The Giannobiles' plan for Lindsay to complete therapy, be finished with cancer and have a child was derailed when, a year after starting treatment, she learned the cancer had spread to her bones. The cancer, now stage 4, ultimately means she will stay on treatment indefinitely.

"Tony kept saying, 'God will make it so that we can be parents'," Lindsay says, but at this point, the couple had very few options of starting a family. Surrogacy was their first choice. They would have tried adoption, but Lindsay was told by multiple sources that they wouldn't qualify to be adoptive parents because of her cancer diagnosis. "We wanted our biological baby, and we believed that God's plan for us was just that since we were able to freeze embryos successfully," she says.

Their first order of business: find a surrogate.

Lindsay and Tony reached out to surrogacy agencies and sent emails to friends and family, asking if they knew anyone who might be willing to carry their child.

The Giannobiles received a response from Kristen Keighley, who she met during treatment.

"She said, 'I can do this, I want to do this for you,'" Lindsay says. "We got things started from there."

Lindsay and Tony Giannobile with their surrogate, Kristen Keighley

Surrogacy is one of the most expensive options for women unable to conceive. It can cost anywhere from $10,000 to $100,000, which includes doctor appointments, embryo transfer, surrogate compensation and legal fees. Most costs are not covered by health insurance.

[Read "The Price of Parenthood"]

To help them finance the surrogacy, friends of the couple held fundraisers. Lindsay's friend, Matt Russo, raised $1,000 for every mile he ran in a Columbus, Ohio, marathon. The final total neared $30,000.

On May 15, Lindsay and Tony's son, Rocco, was born via caesarean section. Lindsay says words can't describe the experience of watching Rocco come into the world. It is something she and Tony will always "vividly remember."

Tony and Lindsay Giannobile holding their son, Rocco

"To think our baby was frozen for about two years, then developed in someone else's body is just an absolute miracle," she says.

Lindsay describes their surrogate as a "selfless, selfless person." Kristen, a single mom, works and attends school full-time. "And to add one more thing to her plate, she carried our child."

Lindsay isn't ashamed of her decision to use a surrogate and feels surrogacy isn't talked about enough.

"I think our generation has gotten better with talking about cancer, but surrogacy is a different story."

Lindsay encourages others to not give up on the dreams they had before cancer. "Look at the things that you thought your life would consist of before cancer" she says. "I think that is so important."

For more information on requirements, costs and support for surrogacy, here are a few resources:

> All About Surrogacy
> Circle Surrogacy
> The National Infertility Association

You can read more about family planning with cancer in CURE's Summer issue article, "Managing Expectations."

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CATEGORIES [ YOUNG ADULTS ]

Paging Dr. Goldfarb

BY GUEST BLOGGER | JUNE 5, 2013

Carrie Corey
My cancer center is also a teaching hospital, which means I often encounter the future of cancer treatment: oncologists in training. They usually enter the room before my doctor and ask about my diagnosis, symptoms and drug side effects. I visit my oncologist enough for him to know the answers to their questions, but the exercise helps teach them good bedside manner.

I met my first oncology fellow soon after hearing the "C" word for the first time; so understandably, I was more than a little overwhelmed. The one thing my husband and I remembered from the discussion was that his name was Dr. Goldfarb, so from that moment on, every doctor-in-training I have met is simply referred to as a "Goldfarb."

Now that I am a veteran in the cancer center, I have a hidden agenda when I meet a Goldfarb: I want to show them I am a person, not a textbook statistic. The ability to see patients as people instead of cancer cases is a valuable skill for an oncologist – one that will no doubt be appreciated by the thousands of patients a doctor will treat throughout his or her career.

I tell them all how I was diagnosed with breast cancer at 29 with no strong family history. Thank goodness my gynecologist advocated for a biopsy even though the mammogram and ultrasound said my lump didn't have the characteristics of cancer. Statistically-speaking, it shouldn't have been cancer...but it was. My initial treatment included a double mastectomy with six hearty rounds of chemo. Statistically, I wasn't likely to have a recurrence...but I did. These are good lessons for anyone to learn, particularly doctors who will be diagnosing future cancer patients.

Last year, I met a Goldfarb in my breast oncologist's office one week and saw him in the gynecological oncologist's office the following week. Upon our second introduction, I laughed, "We actually met last week. Looks like we get to talk about the north AND south poles!" He just stared at the floor and avoided eye contact – I guess the humor of the situation was lost on him.

While most Goldfarbs take the opportunity to learn from patients, my most recent Goldfarb visit was extremely unsettling. I was telling him how it took almost six months to diagnose my recurrence because my X-rays were clean, despite a persistent cough and severe shoulder pain. He replied, "Well, statistics show that finding metastatic recurrence earlier doesn't mean you'll live any longer."

WOW!

In the four years since my first diagnosis, I have never felt more like a cancer statistic than I did at that moment. I'm not sure if Goldfarb was trying to sound knowledgeable, or if he is arrogant enough to believe we know everything about this wacky disease. Cancer is so individualized, we don't always know why a drug will work in one case and not another – a fact that is scary and encouraging at the same time.

I quipped back, "Well, I have metastases to the lungs, liver and bones. Had we found my recurrence earlier, perhaps it would just be in my bones. And if I hadn't had so many spots by the time we discovered it, maybe I wouldn't have just spent 10 grueling months getting weekly chemo!"

My husband likes to say that I play in the small percentages, and I tend to agree. I was in the small percentage of women diagnosed in her 20s. I am in the small percentage of women who are metastatic in her 30s. And I hope to be in the lucky percentage of women that dies of something other than cancer well into my 90s.

We are not cancer statistics – we are people! I don't care how long the average woman lives with metastatic breast cancer, because frankly – who wants to settle for being average?

Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.

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CATEGORIES [ YOUNG ADULTS ]

10 Reasons why I'll attend the OMG Summit next year

BY GUEST BLOGGER | MAY 9, 2013

I recently returned from Stupid Cancer's sixth annual OMG 2103 Cancer Summit for Young Adults, a nearly four-day conference for young adult cancer patients, survivors, caregivers, professionals and advocates. It's the fourth year in a row I've attended this amazing conference, which began in New York City but has been held in Las Vegas for the past two years. Before you think this is some boring oncology event, think again. Here are 10 reasons I attended the Summit and so should you:

1) People understand what you're going through. You can drop words like neutropenia, stenosis and metastasis without people asking you what they mean. No one cares if you have to zonk out in the middle of the day or can't drink. You're not the only one having a hard time losing weight, growing hair or trying to find your way again after cancer. We've all gone through a lot and can relate with each other, share what we've learned, and make the whole crazy cancer and survivorship ride a little easier for each other.

2) You won't be judged or pitied. No one cares that you have one testicle, no nipples, a bald head, a red scar snaking across your chest or walk with a cane. We all have our battle scars. And it's nice to finally say, "I have/had cancer" without someone giving you the pitiful "Awww, you're too young... my cat has cancer too" spiel.

3) You'll learn something new. With 25 breakout sessions and 50 speakers covering myriad topics for patients, survivors and caregivers, you'll arm yourself with plenty of knowledge, no matter if you're newly diagnosed or 10 years out of treatment. From sex to survivorship, environment to insurance, and fundraising to fertility, there's something for everyone. Many of the sessions are repeated so you don't miss out on vital information. The speakers are not only top healthcare professionals, but advocates, caregivers and survivors.

4) You'll be entertained. This isn't your grandfather's oncology conference. One of the biggest problems adolescent and young adult (AYA) cancer patients and survivors have is age-appropriate support. But the OMG Summit changes all of that, delivering what could have been ho-hum information with straightforwardness and humor. For instance, OMG 2013 closed out with a comedic routine by Dr. Zubin "ZDoggMD" Damania, who in his own words mashes "medicine, music and madness to educate and entertain." We also watched the First Descents documentary "Out Living It," played Re-Mission 2 at HopeLab's exhibitor booth, and watched as Stupid Cancer presented filmmaker Andrew Jenks of MTV's "World of Jenks" with its Social Impact Award. And there was plenty of time to dance.

5) You'll hear the latest on the AYA advocacy and research front. Top doctors, oncologists, healthcare pros and non-profits are on hand to talk about rapidly changing AYA advocacy and research. (I have to say, I felt pretty darn smart coming out of sessions after learning about genomics and neuropsychology.) Most sessions end with a Q&A period, allowing them to answer your burning questions on topics that run the gamut: treatments, late effects, sexuality, complementary medicine, carcinogens in the environment and more. Plenary sessions focused on genetic breakthroughs and personalized medicine, as well as progress in AYA research and AYA clinics.

6) You'll meet people working hard to make sure the AYA voice is heard. You'll never meet a group of more dedicated folks than the employees and volunteers of Stupid Cancer and all of the non-profit and advocacy groups that attend and exhibit at the conference. With young adults accounting for 72,000 new cancer diagnoses each year, it's critical that the medical community understands our needs from treatment to survivorship and beyond.

7) You'll be inspired. There are so many inspiring people contributing to the AYA cancer community, from starting non-profits to running marathons and embroidering hats to granting cancer patients and survivors dream days. If you have no clue how to get involved, you'll find plenty of ideas at the OMG Summit.

8) You'll laugh and cry. Where else can you be telling someone a cancer joke one minute and then crying over shared experiences the next? Once and a while you'll even get thrown a curveball, like a surprise marriage proposal. Plenty of tissues are provided.

9) You'll learn to get busy living again. The OMG Summit is not for people who want to stay in bed all day and cry, "Woe is me." It's about not letting cancer rule your life and giving it the bird. Sometimes you need a little help, and everyone in attendance is there to give you ideas and support to make that step.

10) You'll make friends for life. If there's anything positive that comes out of cancer, it's the amazing, supporting, fun friends you make--a rapport that lasts well beyond the walls of the OMG Summit.

If you missed OMG 2013 this year, you can still attend the OMG2013/East one-day conference in New York City on September 28. It's a bit more intimate that the annual event, but has the same, great purpose and people. Hope to see you there!

Amanda Marsh was diagnosed with Non-Hodgkin's primary diffuse large b-cell lymphoma in 2005 at the age of 22. She was treated at Stony Brook University Medical Center and is nearing eight years of remission. She's currently deputy editor for Bisnow Media and lives in Islip, Long Island.

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CATEGORIES [ SURVIVORSHIP, YOUNG ADULTS, BREAST CANCER ]

Why me?

BY GUEST BLOGGER | MAY 6, 2013

Carrie Corey
"Why me?"

I stirred up some controversy in my last article about having a genetic predisposition for cancer. Apparently I opened a huge can of worms with the article's opening statement:

"Even the most well-adjusted cancer patient can't help but ask, 'Why me?'"

Do you ever ask the question, "Why me?" And if you do, do you think about all the good in your life and the fact you didn't deserve to get cancer? I personally think it's a natural, human thought, simply because NO ONE DESERVES TO GET CANCER.

I am not ashamed to admit it – sometimes I look at a neighbor or a friend and think, "Why me, and why not her?" It's not because I feel sorry for myself or think bad things should only happen to other people. And while I don't believe I was "chosen" to spend the majority of my life fighting a battle with cancer, I do think there is more to all of this than just a roll of the dice.

For me, asking, "Why me?" has nothing to do with religion, morality or philosophy. It's about unlocking the mystery of why people get cancer in the first place. Did I make choices to cause this? Is there something I could have done differently? What can I do to prevent this from happening again?

Cancer treatment is very literally a fight for your life, and information is one of the most powerful tools we have in that fight.

If we know why one person gets cancer while another one doesn't, we will be better prepared to fight, prevent and CURE cancer. If one in two men and one in three women will receive a cancer diagnosis in his/her lifetime, millions of lives might be saved if we all ask the simple question, "Why me?"

Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.

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CATEGORIES [ YOUNG ADULTS ]

Stupid Cancer's young adult cancer summit wraps up in Vegas

BY ELIZABETH WHITTINGTON | APRIL 30, 2013

Elizabeth whittington blog image
The sixth annual OMG! Cancer Summit for Young Adults wrapped up this past weekend in Las Vegas. While CURE wasn't able to be on the ground with the gang from Stupid Cancer this year, we heard it was a hit.

You can see video recaps of last year's event here, as well as a series of webinars on the OMG cross-country road trip that eventually led to Las Vegas. We'll give the OMG staff a little more time to put together the 2013 recap video.

This year's summit logged more than 500 survivors, caregivers, healthcare professionals and advocates.

And a marriage proposal. How's that for their motto of "Get busy living"?

OMG volunteers had heard that Brian, a participant at the conference, intended to propose to his girlfriend, Heather, during the weekend. Once Matthew Zachary and Kenny Kane, both OMG founders, learned of the proposal, they helped Brian set up the surprise.

During the closing ceremony, Heather was awarded the "Redhead Spitfire Award." When she came up to the stage to accept her recognition, Brian popped the question.

Heather has exemplified "grace, courage and joy," during her cancer experience, which made the proposal in front of friends and fellow survivors even more special. "The Stupid Cancer family is thrilled to congratulate Heather and Brian on their engagement," said Thea Linscott, with Stupid Cancer.

Proposal at OMG
She said yes.

In addition, this year OMG! has expanded the caregiver track. "In listening to the young adult cancer community's special needs, OMG2013 included a caregiver track that was not only well attended, but applauded. Caregivers were given the opportunity to share their stories, challenges and triumphs with each other and panelists," Linscott said.

OMG
The Volunteer Legacy Award was given to Scott Slater, Erica Mlot and Jason Mlot by Kenny Kane, Matthew Zachary and Alli Ward to recognize their dedication to Stupid Cancer.

You can view some of the photos and commentary from the event on the OMG Summit Facebook page. We'll also be posting guest blogs from those who attended the event, so stay tuned!

May 3: They work fast. Here's a recap video for the OMG2013 wrap up and a slideshow of the weekend meeting: http://vimeo.com/65177220.

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