BY GUEST BLOGGER | MAY 31, 2014
The verdict is in: my scans show progression. My most recent regimen involved a hysterectomy and medicine that caused a mouth full of blisters, but it was not keeping my breast cancer at bay.
Even though we've heard this news before, it always feels like someone pulled the rug out from under me. One might think I would mentally prepare myself for bad scan news, but I refuse to let cancer turn me into a pessimist.
The truth is, I've been lucky in the more than two years since I was diagnosed metastatic. My body has responded to multiple drugs, at least for a little while; my most recent drug regimen is the first one that did not work for me at all.
As many of you know, the name of the metastatic game is "Time until Progression." It's not a matter of if my cancer will return, it's a matter of when. We're fortunate for the many drugs available to prolong our lives in stage 4, but there is no silver bullet yet. And since there is no way to determine which drugs my cancer will respond to until after a round of trial and error, we live our lives in three month intervals between scans, analyzing every muscle pain and headache as a sign that the next scan might show progression.
People can see scan reports of NED (No evidence of Disease) for years, but NED can be a shifty and wiley character. I have had the pleasure of dancing with NED, but it wasn't for very long.
We hang our hats on the hope that one day advanced cancer will really be a chronic, treatable disease like diabetes – that's the anecdote my doctors all tell me when I ask too many forward-thinking questions. I do believe we will get there in my lifetime, but until then, I will keep hitchhiking from one drug to another...searching for NED.
In the past when my scan showed progression, my medical team laid out a very clear "gold standard" next step. This time we appear to be at a crossroads, because they offered me two paths and asked me to choose.
Even though I have excellent medical teams in two top-rated cancer hospitals, it is up to me to drive this bus. Don't get me wrong – I am not advocating ignoring good medical advice, but our lives are at stake, and we need to act like it. Do your own homework, even if it means questioning the recommendations or seeking another opinion altogether. We found a third option: a clinical trial.
So after 14 days with no medication in my system, a barrage of baseline tests and scans, and a mountain of consent forms and questionnaires, I am officially enrolled in a phase 3 clinical trial for BMN-673, a PARP inhibitor designed for metastatic breast cancer patients with a BRCA1/2 genetic mutation. PARP inhibitors are part of the next generation of cancer drugs – they actually work with your DNA to fight cancer. On paper, it looks like the perfect trial for me. (You can read more on PARP inhibitors in "A New Hope.")
My stats have been submitted for randomization, and I have 2:1 odds of receiving the oral trial drug or the standard care chemotherapy. I finally have my next step, and that's where we are, still searching for NED.
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.
Carrie welcomes your response and comments on CURE's Facebook page.RELATED POSTS
BY GUEST BLOGGER | MAY 14, 2014
A trip to Las Vegas does not typically include discussions on career rights, fertility options and sexual dilemmas. It doesn't necessarily mean you will see a comedic speaker, who is also a published author with a PhD, talk of his personal struggles and major accomplishments. One might not expect to meet the CEO of an organization who has spent so much of his time and energy helping others and changing lives, and now changing mine. I can also say that one might not plan to share a connection with over 500 people one has never met before.
But I did.
Different people from all over the country, even from different countries, were joined together because of one commonality: Cancer.
At my first Stupid Cancer event, OMG2014, I was surrounded by fellow survivors. It didn't matter what people looked like, if they had hair or not or if they were in a wheelchair. It didn't matter what people needed to talk about, or what emotions they needed to express, no one was there to judge and everyone was there to support one another. I learned of outlets and resources that will help me and so many others in the future.
Because of cancer, and the chemotherapy treatments I underwent, I have long-term side affects I deal with every day. Now I know I have someone to turn to and help when talking to my employers and co-workers about my disability. I met someone who can coach me in life and guide me in developing a plan for my future. Cancer will not hold me back, and I will live a better life.
After a session just for women, I also learned I am not alone in my sexual experiences, struggles and realities, and even though I may have to face these obstacles, it is OK. I am unique and beautiful. This meeting opened my eyes to these things, and I am ever grateful.
While some serious issues were discussed, a four-day trip to Vegas did not go without some relaxation and letting loose. I was able to bond with my roommates, even though we had never met before. We instantly felt as if we had been lifelong friends who were reuniting. There were others I formed such strong bonds with during the various event during the weekend. I want to keep in touch with them all, and I can't wait to see them again.
Everyone I met at the conference helped me to realize it is OK to struggle and it is OK to ask for help. We can overcome anything. Cancer is seen as such a negative thing, as if nothing good can come from it. I would disagree, because during the OMG! Summit, cancer brought us all together. I have come away with meaningful relationships, resources that will support me in the future, and memories that I will treasure forever.
Lindsay Braunwalder, 24, is a 14-year survivor of medulloblastoma and currently lives in Eagle, Idaho.RELATED POSTS
BY GUEST BLOGGER | MAY 12, 2014
On April 15, 2009, I suddenly went from active to temporarily disabled as a result of my mastectomy and TRAM flap reconstructive surgery.
I wasn't used to being benched and, as a wife and mother, I certainly wasn't used to putting my needs before others. But, breast cancer gave me no other choice and I was forced me to stop, breathe and take care of myself first.
I was frustrated at times, but came to accept that healing was my job and it was impossible to heal without comfort.
Now that I'm physically healed, it's much harder to prioritize comfort. In fact, sometimes I find myself resisting it because I want to throw myself back into daily life and push beyond my comfort zone.
But, life is always going to require healing. And healing is always going to require comfort.
No matter where you are with cancer, you need to make comfort a priority. Here's how to go about creating more comfort in your world:
1. Concentrate on the little things that make you happy: Whether it's a favorite sweater, dog, yoga class, or driving with the top down, if it makes you happy, make sure to enjoy it more often. To get that done, start paying attention to what makes you smile. And then make the effort to bring those things into your life. You deserve it.
2. Rest: Give in to fatigue. Initially, it speaks to you in whispers, but tends to scream like a banshee when ignored. To keep it from getting to that point, learn to shut down at a reasonable hour at the end of the day. Put a premium on rest and getting to sleep and you will be more productive in the long run.
3. Make home a haven of comfort: Every autumn and spring, I seasonalize my home. In autumn, I put out comfy throws in the family room, including a faux fur one I got from Pottery Barn. Sitting under that throw is one of my sweetest comforts when the wind is howling outside and I hate to see it go in the spring.
4. Stay in touch: Keep communicating and sharing. While I was treating, I was immersed in support groups, therapy and events that put me in weekly contact with other cancer patients/survivors. Eventually, that came to an end. I still meet with other survivors by working with the Pathways Women's Cancer Teaching Project. And, of course, I stay in touch with the friends I made along the way. Their inclusion in my life is a constant comfort and source of support.
5. Maintain a soul practice: Whether you are part of a religious community, pray, meditate, or commune with nature, spend some time developing a soul practice. Take your practice one step further by creating a sacred space of peacefulness and healing at home, where you can take a moment to stop, breathe and find comfort anytime you need it.
6. Finish this sentence: I find comfort in ------. Write down whatever you think of without censoring yourself. When you're finished writing, review what you've written and think about how to bring those things into your life today.
It's been said many times that life begins outside your comfort zone. I don't believe it. Comfort fortifies and heals and, without it, we don't have what it takes to venture out into the world and take risks.
How do you do comfort? Let me know and I'd love to hear how you finished the sentence in tip number six. Make sure to tell me in the comments below.
Debbie Woodbury is the founder of WhereWeGoNow, author of You Can Thrive After Treatment and How to Build an Amazing Life After Treatment, a Positively Positive contributor, and a Huffington Post blogger. She is an inspirational speaker bringing hope to cancer survivors and the patient experience to medical professionals. Debbie gives back by working with the Cancer Hope Network, The Pathways Women's Cancer Teaching Project, and the Carol G. Simon Cancer Center Oncology Community Advisory Board at Overlook Medical Center, Summit, NJ. Debbie was honored to be quoted in CURE magazine in Survivor Defined and Seeing Red: Coping with Anger During Cancer. Debbie is a wife, mother, and a former very stressed out attorney. To learn more, join her at WhereWeGoNow and follow her on Facebook and Twitter.RELATED POSTS
BY GUEST BLOGGER | MAY 6, 2014
Raise your hand if you're a cancer survivor. If you're reading this, you probably have an intimate relationship with the green-eyed monster, whether it's you or your loved one.
During my first breast cancer diagnosis, I focused on the light at the end of the tunnel. I remember counting down weeks for recovering from surgery or chemotherapy, thinking it was the number of weeks until I got my old life back.
You veterans are smiling right now; because once you've had cancer, your "old life" doesn't exist anymore. But hey, I was only 29 – I didn't know that yet!
Now I am a 34-year old wife and mom living with metastatic breast cancer. I receive my day-to-day treatment in Dallas where I live, but I travel to MD Anderson in Houston every three months for a PET scan and reevaluation. We manage to make a family event of our trips to Houston, enjoying two nights in a hotel and exploring new restaurants. This trip, Chris and I left our son with his grandparents so we could also celebrate our five-year wedding anniversary with a nice Galveston hotel and a fancy dinner (without a nacho-throwing toddler!)
In the two years since I was deemed incurable, I have tried to focus on living my life rather than the fear of it being taken away. Most days two-year-old Henry keeps me too busy to have idle hands and mind, but there are times even my "Pollyanna" mom can't help me ignore those dark thoughts.
This would be one of those times.
Today the fun is over. We have checked out of our nice hotel, and are on our way to the cancer center. In a few hours, I will receive the verdict of yesterday's scan. It all boils down to one simple, yet very complicated question: IS THE MEDICINE WORKING?
My last scan said NO. So in the five months since, I started a new drug regimen, had a laparoscopic hysterectomy, had a brief hospital stay with pneumonia (supposedly not related to my cancer), and tweaked my dosage on multiple occasions to try and keep the crazy new side effects at bay. We also celebrated Henry's second birthday, my 34th birthday, traveled to Pensacola and Phoenix, and lived through a complete kitchen renovation. HA!
When I write it all out...I am pretty much painting the picture of a crazy person! But remember what I said about idle hands and mind? I do like to keep busy.
Last night as I lay in bed, I kept running through my checklist of new aches, pains and irritations and guessing whether they are attributed to the cancer, the medicine or the germs Henry brings home from Mother's Day Out. My itchy hands and annoying mouth sores are side effects, but is my cough from last month's cold or swollen lymph nodes? Is my trouble sleeping a side effect or just a touch of anxiety? What about my recurring headache? Medicine or cancer in my skull?
If it's not a good scan, we will switch medicines again, and I will get a whole new list of side effects to manage. I will also cross one more off the very finite list of drugs available for my kind of cancer. At last count, I was one drug away from the chemo chair. (And darn it, my summer hair highlights look great!) But Pollyanna reminds me of what my doctors all say - new drugs are coming down the pipeline.
If it is a good scan, I get to breathe a little easier this summer, at least until I'm back here for my next round of scanxiety.
I approach today cautiously optimistic. I am hopeful for good news, but prepare myself for dealing with whatever may come. We'll spend the sobering four-hour drive back to Dallas wrapping our heads around it all and remembering to focus on how truly lucky we are, despite our challenges. Because there is an awesome little guy at home, impatiently waiting to see us.
And like me, you'll just have to wait for the results. Here we go...
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY GUEST BLOGGER | MAY 1, 2014
Last July, I found myself frantically clutching the rails of the Liberty Island Ferry readying myself to exit. The waters of New York Harbor heaved angrily. The ferry lurched and the steel exit platform upon which I was expected to step, intimidated me as it violently banged up and down. I was a tourist, a rookie; the situation was completely foreign to me, and I felt scared. As my turn approached, the crewman yelled sternly, "Do not hesitate!"
Seriously?! My world is being rocked, literally, and you want me to move?
My overwhelmed brain facing a sudden and tumultuous situation was happy to keep me right where I was. All I saw were white caps and the hungry 6-inch steel teeth slamming between me and the pier.
Responding to the firm instruction, I did as told. I took a step forward not at all sure my foot would land where it was supposed to. It did. I flushed with relief. Mr. White Uniform was right.
Back to work at the cancer center I chuckle to myself. Talking with my patients, I am in essence hollering, "Do not hesitate!" At cancer diagnosis, people are battered in a tumultuous sea. And my words to them?
Yes. I wear a white uniform, and I am right.
There exists a subtle underlying assumption that people with cancer are supposed to be miserable. Family members and healthcare providers alike, in well-meaning attempts to be supportive, inadvertently promote weakness, fragility and dependence by speaking urging words like "take it easy."
Cancer is scary. Treatment can be brutal. Often people are miserable. Move? Me? Seriously?! But I'm missing a lung, my skin is burned, my colon was just rerouted. Of course you're afraid to move! Perhaps no one on your care team is even encouraging you to move. So you're stuck on the lurching ferry.
The misery of cancer treatment is not a good place to hang out. It's time to move. Not only is it OK for you to exercise during cancer treatment, you should exercise during cancer treatment. Necessary post-operative restrictions have expiration dates and research clearly shows that exercise during chemotherapy and radiation is safe and reduces side effects such as fatigue, pain and weakness. Those facing a knee or shoulder surgery are ushered into rehabilitation. You should be, too. Talk with your doctor or nurse about a prescription for cancer rehabilitation. We will help you take that step.
Moving is living. Do not hesitate. Go take a walk. Your feet, and you, deserve to be on the solid ground of good health, even in the middle of cancer treatment.
Leslie J. Waltke is a physical therapist with a clinical mastery in oncology. She is a national expert, author, speaker and educator in cancer rehabilitation and is the Cancer Rehabilitation Coordinator for Aurora Health Care in Milwaukee, Wisconsin.RELATED POSTS
BY GUEST BLOGGER | APRIL 30, 2014
I sit in a hotel conference room with 45 or so men, aged 20 to 50 or so. Some are in treatment right now, a few will be for the rest of their lives, and then there are a handful who were diagnosed a few decades ago, like me. Among the diverse diagnoses are men with testicular cancer, lymphomas, brain cancers, sarcomas and leukemias. And we seem to hail from all walks of life, an ex-steel worker with broad shoulders occupies a seat a few feet away from a doctor, there's an elite athlete who works for a tech startup next to a guy who works in a bowling alley. There's even a Hollywood actor in the mix. For the most part, we don't look ill and this could be a support group for anything. But it isn't anything, and this is an unusual meeting. I write this with some confidence after attending over 300 cancer-related conferences in the past 14 years.
I've never sat in a room with this many young adults with cancer in one place, especially not men. And we are vocal. With virtually no prompting, we talk about body image issues, bouts with depression, anorexia and post-traumatic stress, when to "come out" to potential romantic or sexual partners, and applying the resilience found in cancer to our occupations. While a few of the comments are superficial, for the most part these men have come to work and compared with other early support groups I've witnessed as a young adult survivor/psychologist, the ratio of substance to the superficial is weighted heavily on substance.
Perhaps equally surprising is the complete lack of machismo in the room. There's no posturing. I used to supervise group therapy run by psychiatry residents, and I was always grateful to have people who had been in alcoholics anonymous in the groups because they tend to cut through the superficial and focus on the issues quickly. This is what the room feels like.
"I've wrestled with anorexia and body image issues," one guy says. Another talks about how the disease obliterated his medical training. Others talk about how they'd handicapped themselves, thought of themselves as flawed and unnecessarily dampened their own ambitions or romantic expectations.
The group was one of many offerings at this past weekend's OMG! Conference sponsored by Stupid Cancer, a non-profit dedicated to young adults (women and men) diagnosed between ages 20 and 40. Over 450 young adults from around the country (and a few other countries) attended.
When I was diagnosed, I knew one other guy, my age, who'd had cancer. He was terrific, but we spoke by phone only twice during my first year of treatment. The waiting rooms and chemotherapy suites where I was treated in Hartford was a 60s and up crowd. It was like dropping down in a creaky elevator shaft into a dangerous coalmine and only speaking to one other guy who had been down there.
Even though I was diagnosed more than 25 years ago, the treatment environments for many, if not most young survivors, hasn't changed much. There are only a few centers nationwide that have young adult clinics. Perhaps this is why doctors are still not telling enough patients about fertility options, not referring us to clinicians who can address the body image and career fears we face, nor doing enough to help us navigate the long-term effects.
So, young adult survivors are trying to step up and fill those gaps. There were group sessions on genomics, chemical exposure, advocacy, meditation, managing anger, healthcare reform, panels for specific disease, nutrition and living with metastatic disease, among others. And perhaps more important, there was fun: scavenger hunts, night club dancing, bowling night and pool parties.
Perhaps the most remarkable aspect of the conference to me, having been active in the cancer community for 15 years or so, are the people who dedicate time and energy to this cause. Many of the activists are people who suffered when they were patients from a lack of access to other young survivors who might have helped them.
Amber Vance, a young woman with Hodgkin's disease was never informed about fertility options when she was diagnosed and now dedicates significant time to getting young survivors together for meet-ups.
Alli Ward, a main organizer of the conference, has lived through multiple relapses and gave a "Chronic Cancer" break-out session focused on living with metastatic disease. Jonny Imerman, a testicular cancer survivor, who has created an elaborate, national peer-to-peer mentorship program for young survivors based out of Chicago. And there were many more. There are camps, river trips, peer mentoring programs, fertility foundations, disease specific foundations and nutrition experts.
I did a talk at the conference this past Sunday and that evening, a cascade of social media followed, there were 30 new Facebook friends, a gaggle of new Twitter followers and photographs dancing across the electronic ether.
The cancer coalmine is still terrible. But going down now, with a lifeline to these volunteers and organized cancer warriors, would have been better.
Dan Shapiro is a psychologist and chair of the Humanities Department at the Penn State College of Medicine. He's written three books including, Mom's Marijuana (about his cancer experience) and "And In Health: A guide for couples facing cancer together." His writings about the patient experience and physician-patient communication have appeared in the New England Journal of Medicine, the New York Times, JAMA and he's been featured on National Public Radio's All Things Considered and Science Friday, among others.RELATED POSTS
BY GUEST BLOGGER | APRIL 23, 2014
Everyone has a stomach and is therefore at risk of getting stomach cancer. I was diagnosed with stage 4 incurable stomach (gastric) cancer in April 2008 when I was only 40 years old. At that time, I was a practicing attorney with my own firm, had three young children and my husband was a physician. I was given only weeks to live and I knew that only four percent of people live five years after this diagnosis. However, instead of accepting this news as a death sentence, I began the fight of my life!
I shut down my law practice, had a port inserted and started getting heavy-duty chemo. I lost my hair, got neuropathy and was in bed for months on end. But I fought hard! My desire to be here for my kids was my first and foremost reason for my fight for survival. There were no resources available for stomach cancer patients and their families. During those months in bed, I realized that I wanted to raise awareness, provide education and support to others affected with stomach cancer, and advance funding for research.
Thirteen months after my diagnosis, I founded Debbie's Dream Foundation: Curing Stomach Cancer (DDF), a non-profit dedicated to raising awareness, advancing funding for research, and providing education and support internationally to patients, families and caregivers. Its ultimate goal is to make the cure for stomach cancer a reality. This drives me and my DDF Dream Team to help make an impact every day. DDF now has 20 chapters and helps patients all over the world.
We are also making a big difference in advancing research funding. We held the Second Annual Debbie's Dream Foundation: Curing Stomach Cancer (DDF) Advocacy Day in Washington D.C., on Feb. 27. Fifty-seven DDF advocates from all over the United States and Canada participated in over 70 congressional meetings to raise awareness and to fight for increased funding for stomach cancer research. Advocates included patients, survivors, family members, caregivers, healthcare professionals, researchers and advocates who all shared their stories with congressional members and staffers about how stomach cancer has impacted their lives.
Before our first Advocacy Day last year, nobody had been to the Hill to talk about stomach cancer, so it isn't getting the attention it deserves. The members and Hill staffers all told us last year that they didn't know stomach cancer was a problem and that no one had been to see them about stomach cancer. Debbie's Dream Foundation is changing the landscape for gastric cancer in the United States. It was an honor to meet with key legislators who are our champions in supporting increased funding for stomach cancer research.
The next day, we held the first ever Congressional Capitol Hill Stomach Cancer Briefing in cooperation with Sen. Peter Roskam, the American Gastroenterological Association and the American Cancer Society Cancer Action Network. Speakers informed attendees that the sad fact is that little attention is given to gastric cancer and, per cancer death, stomach cancer receives less money than any other cancer. This is a shame because stomach cancer is the fifth most common cancer worldwide and the second leading cause of cancer death.
Gastric cancer needs even more attention now because it is on the rise in young people in the United States ages 25-39 and we don't yet know why. Only research can tell us why. As we see from other cancer types, more funding equates to more research which equates to better overall survival and someday to a cure. Congress and the advocates will surely not forget these historic days.
Stomach cancer patient, their families and caregivers should endeavor to educate themselves about this diagnosis, and I believe that they want to take charge of their health. DDF empowers patients to do that with our free educational symposium that we offer each year. Our 4th Annual Stomach Cancer Education Symposium occurs on Saturday, April 26 in Fort Lauderdale, Fla. Registration is required for both in person attendance and for our worldwide webcast. We also celebrate our accomplishments all year long as well as the organization's anniversary that evening at our Dream Makers Gala. For more information about the Symposium and Gala and to register, go to DebbiesDream.org.
Join me and my Dream Team in the fight!
To learn how to let your elected official know how you feel about increasing funding for stomach cancer research, call us at 954-475-1200 or email your inquiries to admin@DebbiesDream.org.
Debbie Zelman is a stage 4 stomach cancer survivor and founder of Debbie's Dream Foundation: Curing Stomach Cancer (DDF), a non-profit organization dedicated to raising awareness about stomach cancer, advancing funding for research and providing education and support internationally to patients, families and caregivers. You can find more information at DebbiesDream.org or by calling 855-475-1200 or email to Info@DebbiesDream.org.RELATED POSTS
BY GUEST BLOGGER | APRIL 22, 2014
Living with cancer has forced me to know my limitations, even though it conflicts with my "can-do" personality. I simply can't be everything to everyone, and that's OK. So when fighting medication side effects and juggling doctor appointments, sometimes normal life tasks like folding laundry or running errands have to take a backseat.
When I take Henry to Mother's Day Out two days a week, most of the moms there are dressed for busy days filled with yoga and lunch dates. Me? Well, I'm either dressed to go downtown for a doctor's appointment, or I look like I just rolled out of bed, threw on some clothes and let my kid eat a PB&J for breakfast in the car.
Last week Henry needed an Easter basket for his classroom Easter egg hunt. Since anything he gets his hands on will be thrown, kicked, filled with dirt and possibly even chewed on, I picked out what I thought was the perfect Easter basket for the two-year old wild man: a plastic bucket with a picture of a yellow chic on the side. Then I held my head high as I placed his bucket on the table next to all the fancy pink and white gingham fabric-lined Easter baskets... apparently I was the only mom in his class who ran to the dollar store to cross that to-do item off her list!
Before I was diagnosed with stage four breast cancer, I was able to "power thru" when I was tired or not feeling my best. But that's just not the case anymore, and now if I overdo it, I suffer from what we call, "hitting the wall," because my body will quite literally STOP. Energy has become my most valuable commodity, and the more I spend running all over town searching for the perfect school bag, the less I have to spend with the people I love. Do you think Henry cares if his school bag has his name handwritten in black marker instead of monogrammed with cute letters? Because I KNOW he cares when Mom is too tired to play cars with him on the dining room floor!
Even though my pride hates to admit it, I have officially removed myself from the Super Mom competition. Because when I have to choose between spending time with my two favorite guys or looking like the mom who has it all together, my guys will win every time.
So if you see me in the grocery store, and Henry's wearing his reindeer pajamas in April because it was the last clean shirt in his drawer, don't judge until after you see the big grin on his face. He may not have Super Mom, but he is one happy kid. And that's all that matters to me.
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY GUEST BLOGGER | APRIL 17, 2014
When I hear women in the locker room at the gym curse the day because of a broken nail or a parking ticket, I can't help but get sassy with them. "Let me get this straight," I might say, pointing at my chest where two perfectly formed breasts used to reside pre-double mastectomy. "I'm flat as a pancake, have chemo brain until noon, and my eye brows never grew back, but do you hear me complaining?"
"We don't know how you do it," they sigh, shaking their heads with a mixture of pity and ...well, pity. This is what kills me. That "civilians" – that's what my friend and fellow survivor, Noreen, calls the uninitiated – act like cancer survivors have a real choice in the matter. Like choosing the paint color for our car from the factory or selecting a new dish washer from Sears.
"Chutzpah!" I declare with a winning smile, "That's how I do it; chutzpah and good medicine keep me putting one foot in front of the other."
In spring 2004, I didn't think I had many steps left after a routine mammogram failed to detect a tumor the size of a golf ball. Thankfully, I noticed a change to the areola of my right breast a month later and quickly called my PCP. A biopsy confirmed my darkest fear but the prognosis after surgery was far worse.
Cancer had spread to my lymph nodes. That, coupled with the size of the tumor and my relatively young age – I had just turned 45 - lead my surgeon to determine that I had very aggressive breast cancer. Very apologetic, he predicted I had a 75 percent chance of dying within three years. I could feel the cancer goblins dancing on my grave within three minutes.
But then a funny thing happened on my way to the afterlife. I met my oncologist the following week for the first time, and she gave me a healthy dose of the medicine I needed most: hope. "I'm so excited to work with you," she said beaming, "with all the amazing treatments today for advanced estrogen receptor-positive breast cancer, you have a 25 percent chance or better of beating it."
With a "how do you do?" like that, I became 100 percent convinced that the odds were in my favor. I kicked kicking the bucket, truly excited for all the summer adventures that lay ahead with my husband and our two young daughters. Whether camping on the lake or camping out at the infusion center ingesting "cocktails" so exotic my hair fell out, my oncologist helped me see that it wasn't enough to merely accept treatment.
I wasn't a criminal resigned to serving my sentence. Quite the opposite, I saw myself as an eager and enterprising foreman, overseeing the biggest restoration project in my life, way bigger than remodeling our kitchen a few years prior. Cancer treatment or kitchen remodeling, if you don't have the right tools and know how to use them, chances are slim you'll get the results you wanted.
Survival is still an adventure all these years later, one that wouldn't be possible without continued pharmaceutical research and the dedication and encouragement of my oncology team. After an initial five-year course of the oral aromatase inhibitor, Letrozole, following chemotherapy and radiation, I recently completed an additional five years in a double-blind trial to determine if extended use of Letrozole gives added benefit. I won't find out the results until 2015 but, regardless, being part of such an important study in the fight against breast cancer recurrence has been an easy pill to swallow.
Carolyn Choate was diagnosed with stage 3B invasive lobular carcinoma more than 10 years ago. She is a long-time TV producer and on-air talent for WYCN in New Hampshire. A dedicated "coach potato" before cancer, Carolyn has since participated in the SheROX triathlon, is an avid kayaker with her daughters, and most recently rode her bike solo from Boston to Montreal to raise money for Rotary International's "End Polio Now" campaign. She is currently working on a memoir, Flat as a Pancake & Loving It.RELATED POSTS
BY GUEST BLOGGER | MARCH 26, 2014
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.RELATED POSTS