BY GUEST BLOGGER | AUGUST 24, 2013
Here I am in Nashville at the first National Women's Survivors Convention with almost 900 other women committed to healthy survivorship and paying it forward.
It has been said that it takes a village to fight the war on cancer but it doesn't mean it is always about fighting. Celebration is also sometimes required, and at the Convention women celebrated their own definition of survivorship. Women cancer survivors are also caregivers, putting themselves last in terms of their own needs. But at this convention they've gotten together to share, connect and celebrate.
What's cancer got to do with celebrating? These survivors know it's not the adversity but what they do with it. That's why I joined other ABCD (After Breast Cancer Diagnosis) mentors on a bus trip to Nashville...we are here together to learn and share. Here are my observations so far:
We are empowering ourselves through learning at scientific sessions. There has been lots of networking and discovering new resources for support and building a community among all women survivors. Whether it was a group of women in their pajamas swaying and singing to the Little River Band's "Reminiscing" (by the way they sound even better than ever) or listening to Scott Hamilton inspire by asking, "What do you do when you fall down...you get up!" (This is what cancer and ice skating have in common.)
Ultimately, women's survivorship involves choices: women who chose to launch the national women's survivor movement and women who chose to take time from their busy lives to travel to Nashville to actually take care of themselves. These women are now choosing to focus their strength on paying it foward.
Amalia Rigoni is a 12-year survivor of breast cancer, a Department of Defense consumer advocate, former Y-ME Hotline supervisor & presenter and now ABCD: After Breast Cancer Diagnosis Mentor (Helpline & Match). She is reporting from the National Women's Survivors Convention in Nashville this weekend.RELATED POSTS
BY GUEST BLOGGER | AUGUST 19, 2013
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.
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.
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.RELATED POSTS
BY GUEST BLOGGER | AUGUST 15, 2013
What numbers have significance to you? Maybe it's the phone number of an old friend. Maybe it's the street address of the house where you grew up. When people ask about my 18-month old son, the conversation almost always starts with, "How old is Henry now?"
Numbers define the world around us, so no surprise they also help define our cancers. Size of tumor? Number of cancerous lymph nodes? How many chemo drugs? And the scariest, most anticipated number of all--what's your stage?
This week I visited with a friend and new member of the cancer club. He has a very positive attitude about life and a strong belief system, and both served him well during the initial shock of his diagnosis. But after surgery, my friend struggled to cope with his newest significant number--his cancer stage.
Medical professionals spend years studying cancer before they enter the field, but a new patient has only days to get up to speed. I was a 29-year old newlywed when I was first diagnosed with breast cancer, and I remember feeling so confused when I looked into the mirror. "I don't look sick! The doctors tell me I have a life-threatening disease, but are they sure?"
After a bilateral mastectomy, I was labeled STAGE TWO, forcing me to realize I didn't have something normal like the flu or chicken pox; I had scary stuff that meant hospital stays and chemotherapy. Assigning a number to my cancer put it into tangible terms that I can understand without a medical degree, allowing me to better process the situation. How did you react when you were staged? Did it make you feel better or worse about your diagnosis?
Things have changed a lot in the four years since I started down this path, and I don't care much for the terms of my new significant number. I don't often tell people I am now STAGE FOUR simply because we all know the stigma attached. How many of you just cringed when reading the words "STAGE FOUR?"
But do you want to know a secret? I still just see me when I look into the mirror--I don't see my scarlet number, and I would prefer you don't see it either.
Before my initial diagnosis, I thought the stage of someone's cancer described how likely the person was to survive the fight. While other people may think FOUR measures my odds, I prefer to think of it as a tool for determining the course of treatment. Doctors tell us cancer is individualized, so let's stop wasting so much energy worrying about staging and concentrate on the task at hand--slaying the two-headed monster, in whatever form he has presented himself to you.
A friend once told me the lottery was for ignorant people, and if I knew the odds of winning, I wouldn't play. But when the odds aren't stacked in your favor, are you going to stop playing the game? I know I will keep playing – because somebody has to be that lucky fool, right?
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey. You can find her on twitter at @carriemcorey.RELATED POSTS
BY GUEST BLOGGER | AUGUST 13, 2013
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.
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."RELATED POSTS
BY GUEST BLOGGER | AUGUST 7, 2013
When someone you love is diagnosed with cancer, all hell breaks loose inside.
Thoughts race, things feel unreal... and you know, somewhere deep inside you, that things will never be "normal" again. Nothing will be the same.
In 2008 my mother was diagnosed with triple-negative breast cancer. She was treated with a lumpectomy, radiation and chemotherapy. We thought she was fine. We assumed we were done with this cruel cancer business. But in 2010, a month before my wedding, my mother's cancer returned. In both her lungs.
I remember when she told me. We were on the phone. She had been having this cough for a while. She called and told me, that no, in fact she was not fine; that her X-ray had shown that she had two cancerous nodules in each lung. I do not remember what happened next but according to my husband I threw my cell phone across the room and began screaming as though I was being physically crushed by a cement wall. And that was a perfect description of how I felt.
I was so angry and horrified and terrified. All at the same time. I could barely breathe. It was a relief when the tears actually came because I thought I might explode from the mix of things I was feeling. I told myself to breathe, and the more I breathed the more the tears came.
Why? Why was this happening to us? Weren't we good people? Didn't we try to do the right thing? Hadn't we gone through this cancer thing already? As the second round of tests and then treatment began I could feel myself getting bitter. I could feel the resentment building up in me each time I entered our treatment center with my mom. I could feel it when I saw seemingly healthy mothers with their daughters. I could feel it when I thought about the prospect of losing my mother at a young age. I began to lose interest in my upcoming wedding, in my work and in my relationships. And on top of it, I felt guilty and ashamed for feeling what I was feeling. Wasn't I supposed to be strong? Wasn't I always the optimistic type? Where was my brave face? My Midwestern resolve? So on top of the feelings I had about my mom's cancer I was judging myself for having those feelings.
It was a very hard period for me. I felt like I couldn't talk to anyone about what was going on with me, and I realized that I needed to get some help. I needed to find someone who I could talk to. There are so many resources out there. I just needed to be ready to use them.
I began seeing a counselor who specialized in working with adult children who had a parent with cancer. I was also my mother's primary caregiver, which added to my feelings of resentment and fear. What if I was doing it "wrong?" Why was I the one who had to do this?
On my first session my counselor asked me how I was holding up. I immediately launched into what was going on with my mother. How her treatment was going, what her latest test results were, how she was coping with the side effects of chemo, etc. After I was done, my counselor looked at me and smiled. "What about you?"
Me? What about me?
Nobody had asked me that in a long time. "Oh, you know," I said, "I'm OK. All things considered."
My counselor smiled a gentle smile, and for the first time in a long time I felt safe. I knew from the look in her eyes that my counselor wasn't going to judge me. "To be honest," I said, holding back tears, "I'm not doing so well." And then I began to sob. I just let the tears come freely, I didn't wipe them away quickly as I had become accustomed to doing when I would think about my mom's cancer and this new world we were now a part of.
For a long time my counselor didn't say anything. She just let me cry and cry. And it felt like I cried forever. And it felt so good to just cry. To not try and stop myself from feeling my feelings. Or manage them. Or "fix" them.
Finally my counselor said, "It seems to me, you are doing just fine. You are exactly where you need to be."
That marked the beginning of a turning point for me. I decided to let myself off the hook when I noticed strong feelings coming up inside me as my mom and I went through her cancer journey together. I decided not to judge myself. And although they were never really easy, things became easier. Letting go of my guilt and shame created space for me to focus on the thing that really mattered.
The love I felt for my mother and the knowledge that yes, it was messy at times, but I really was doing pretty well.
Jen Bosworth is a writer and performer from Chicago. Her one woman show, "Why Not Me...Love, Cancer and Jack White" will make it's East Coast debut this August at The New York International Fringe Festival in NYC. Check out her website adamnnicelady.com for more information about Jen and "Why Not Me."RELATED POSTS
BY GUEST BLOGGER | JULY 17, 2013
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.RELATED POSTS
BY GUEST BLOGGER | JULY 11, 2013
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.
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."
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.
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."
"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:
You can read more about family planning with cancer in CURE's Summer issue article, "Managing Expectations."RELATED POSTS
BY GUEST BLOGGER | JUNE 19, 2013
I've always known that cancer is the growth of abnormal cells, can spread from its primary site, consists of different types and stages and that it's sometimes called the silent killer.
If you're like me, you've always thought to yourself, "Knowing all of this gives me a good idea of what cancer is." After my first week interning at CURE, all I can do is laugh at myself.
By the way, I'm Jennifer. I'm the editorial intern at CURE for the summer. I'm very excited to be working with such an outstanding group of individuals, but I'll let you in on a little secret. I really don't know what I'm doing.
At first, I felt a bit out of place; like I didn't belong here because I had no idea what anybody was talking about. Yes, it was overwhelming. I'm working at a publication for cancer patients, survivors, caregivers and families, and don't have much background in cancer. My interest in CURE came from writing for my college newspaper, The Daily Mississippian at the University of Mississippi. As an editor/reporter, I often wrote stories of how people overcame unwanted obstacles or burdens. I've always enjoyed telling the stories of others, and appreciated the lessons that came out of it.
But a comment from Lindsay Ray, the assistant editor at CURE, made me feel that my lack of knowledge wasn't necessarily a bad thing, and that it somehow connects me to our readers.
"Think of yourself as a newly diagnosed patient," she told me. "Most of them don't know anything about their cancer at first."
True. It was definitely a lot to take in on Day One. I was scared and intimidated listening to the editorial staff on my first day. I'm willing to bet it's scary to hear that you have cancer. If something didn't make sense to me, I would look it up. If you're diagnosed with something you're unfamiliar with, you're very likely to do your research on it.
Obviously, learning about cancer will not happen overnight. It will not happen over a week. It probably won't even happen by the end of my internship in August. No, scratch that, it for sure won't happen then.
The beginning of a journey can be many things. It can be scary, overwhelming, exciting or anything else. There are sometimes when we're unprepared for it, whether it's a new job or a new diagnosis. The rest of the journey is up to us, and we can only control how we handle it.
So please, what do I need to know to help you?
Jennifer Nassar, a journalism graduate of Ole Miss, is a summer editorial intern with CURE. Jennifer enters graduate school at the University of North Texas this August.RELATED POSTS
BY GUEST BLOGGER | JUNE 6, 2013
Michael Wong, melanoma oncologist and CURE advisory board member, explains how recent studies are targeting the PD-1 pathway and describes why there is so much excitement surrounding this new class of immunotherapy.RELATED POSTS
BY GUEST BLOGGER | JUNE 5, 2013
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."
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.RELATED POSTS