Vallory Jones: Survivor Anthem

The C4YW Blog welcomes Vallory Jones back for a very special VLOG entry! Be sure to  check back often, as Vallory offers us insight and experience about her diagnosis and life after celebrating her first Cancerversary.  Her strong voice is one of the many that C4YW strives to represent, and we are very excited that she has chosen to share some of her stories, writing and outspoken-support via video!  Be sure to visit the We can’t wait to see all of you this weekend for the big event: C4YW: SEATTLE!

Victorious Val.

Vallory is a breast cancer survivor, Zumba freak, and fitness fanatic.  She has taught middle school English for 19 years and enjoys mountain biking, singing, writing, and playing guitar.  She recently celebrated a milestone, her first Cancerversary. 

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Jennifer Acee: Mommy Don’t Like That

The C4YW Blog is overwhelmed by the amazing and inspiring writing that continues to pour in! Today, we welcome another new blogger, Jennifer Acee, with her first blog entry.  Her strong voice and particular story is one of the many that C4YW strives to represent. Be sure to visit the website and register for this year’s event in Seattle as time is running out!

atparkI am 28 years old. I have breast cancer.

I am two weeks into my first round of chemotherapy and the ominous day in which my scalp beings to tingle and feel heavy has just arrived. I run my hands across my recently-chopped-short hair and they come away covered in dislodged strands. It’s happening.

Immediately, I want it shaved off. I don’t need to lose it in clumpy stages or to hang on to scarce strands among a desert of baldness. (Gross.)

The metamorphosis into bald is a pretty significant kick into the emotional struggle of a cancer diagnosis – the full weight of which will take me months to understand. Overnight, I will become a person who looks so ill that people actually perceive me, with one glance, as someone who is dying.

Tonight, I lose it (my hair that is.)

I am sure my husband never imagined he would shave my head. We’ve dated since high school, been together a decade now and faced all manner of odd things that life pitches. But this is a new one for us both.

I didn’t envision it as a particularly traumatic experience for him. Rather, I think I know him well enough to accurately conjecture he would be thinking about how I was handling the situation as he passed the buzzer across my scalp. But a girlfriend implanted in my mind that shaving his wife’s head might be a little hard on him too. Fair enough.

So on this night, as we were (quite literally) facing tribulation head-on, I attempted to lighten the mood, for his sake. Okay, cue lame attempt to be light-hearted: “Well,” I say, “I guess I don’t need my keys anymore…” too long of silence while I try to build up the punch-line suspense and he stares at me blankly… “I’ve lost my locks.”

Out to the driveway we head, for ease of clean-up, with a chair and the clippers. My 2.5 year old, in PJ’s and rain boots, follows behind and out into the action, as though this were a normal family activity.

As my husband passed the noisy buzzer across my scalp, which hadn’t been exposed since I was an infant, I had planned to look up at him and say, “I better not wear a turtleneck, I’ll look like a roll-on deodorant,” my second, prepared bald joke that I had looked up online moments before we began. But I ended up not having the heart. The clippers were really loud and uncomfortable and I just wanted to get it over with as quickly as possible. (Note, my husband was keen on starting by shaving a mohawk and taking a picture, so I guess he was handling the situation just fine after all.)

So yes, in summary, my husband shaved my head in the driveway while my son stomped around in the hair in his rain boots. Just another normal evening…

The first person I let look at my bare, bald head is my 2.5 year old son, a good 24 hours after our driveway-shaving. We were in the bathtub when he suddenly looked surprised, noticing my naked/hairless head joining us in the tub. I tried to explain to my happily-oblivious toddler that my hair is simply gone now, which I don’t really like, so I’ll be wearing a lot of hats.

My son nodded casually and then concluded our heart-to-heart by pointing at my head and saying, “Mommy don’t like that.”

“That’s right son, I don’t really like it like this.”

And so went the next 5 minutes with him repeating “Mommy don’t like that,” as he pointed at my head and tried to process what I had told him.

Over the next week, as my baldness morphs into normal for him, he will occasionally recall this conversation and repeat the mantra. With beautiful succinctness and accuracy, my toddler will walk around proclaiming, “Mommy don’t like that.”

Jennifer Acee is a working mother who recently underwent treatment for Stage II Breast Cancer. She enjoys reflecting on life through her writings and her blog. Visit here to read more. 

Lindsay Ruland: Ovary Overload

As we finish out the month of January, the C4YW Blog welcomes back, Lindsay Ruland, for the third installment of her monthly series! Check back often to read more into her journey. Here, Lindsay shares with us the experience of egg retrieval surgery. Be sure to visit the website and register for this year’s event in Seattle!

There’s nothing quite like the moment you hear those three little words,“You have cancer,” unless, of course, they are then followed by,“Treatment may compromise your fertility.”

While some young women in this situation may initially worry about losing their hair or their breasts, the first thing that popped into my mind was that I could lose my ability to have children.

As soon as my breast surgeon called for neoadjuvant chemotherapy, I asked, “Is there any way I could freeze my eggs before we get started?”

He pointed me in the direction of several fertility clinics, but reminded me that I had a very small window of time to complete a cycle of IVF before beginning chemo: 3 weeks.

Two days later, I found myself uncomfortably sitting in the office of a fertility specialist. He went over the procedures very brusquely, explaining that I would need to have blood drawn every day to measure my estradiol levels, and that every 3 days or so, I would need a vaginal ultrasound to check on what my ovaries were cooking. I would also need to take an estrogen blocker while undergoing the fertility treatments to avoid feeding the tumor.

“We have to start now,” he said, abruptly getting up from his chair and opening the office door. Confused, I followed him down the hall and found myself in the ultrasound room. Without drinks or dinner, that man had my pants off and my legs up in stirrups in record timing. Needless to say, I was a little embarrassed. Apparently, however, he liked what he saw with that alien probe. My insides got the green light and he sent me back to meet with his nurse to go over my hormone shots.

My head was spinning as all of this information was flying at me. I had just been diagnosed with cancer, how could I keep track of everything they were telling me? I started to cry in the consult room with the nurse as she gave me my first hormone shot, not because the needle hurt, but because I was totally overwhelmed. My mother had been wise enough to bring along her notepad and had recorded everything that had been said along the way. Without her, I would have been lost.

The next day, I showed up for my blood work and they found that my estradiol levels weren’t high enough, so I would need to bump up the dosage. This would also be the first time I would give myself the shot at home. I had to find YouTube tutorials to remember how to accurately mix the hormone solutions. I prepped the site, pinched my skin, and stuck the needle into my abdomen. A huge welt appeared on my skin and I freaked out, hysterically calling the nurse on call. Apparently, I’d used the wrong size needle tip and hadn’t stuck it in deep enough. As the days went on, I got to be somewhat of a pro at giving myself the hormone injections.

Lindsay Post-Op

Lindsay Post-Op

“Wow! You’ll have enough eggs to fill an Easter basket!” the doctor said as he examined my painfully full ovaries. About two weeks in, I certainly felt as though I was pregnant. I found myself waddling to get around because my ovaries were so huge and full of eggs. I was officially on ovary overload.

The nurses called and said that my hormone levels were so high that I would likely be triggering over the weekend. That meant I would need to get a giant intramuscular shot of HCG in my buttock. My mom and I combed over trusty YouTube and found a crazy Russian video of this very procedure. When the time came, I lay on her sofa, pulled down my pants, and let her jab me in the butt muscle with HCG.

The day of my egg retrieval surgery, I was being a wise-ass  It was the only way I could cope. They took me back to the cold OR and had me get onto the table. They strapped me down and put my legs up into stirrups.

“What is this, some kind of bondage movie?” I asked as the anesthesiologist shot me up with the good stuff. I never got to hear a response. I woke up and I felt as though someone had taken a baseball bat to my uterus. All I could think about was getting a vegan “ cheese steak.” The doctor walked past and gave me a double thumbs-up,

“Thirty-seven!” he exclaimed.

Thirty-four eggs survived the freezing. I was proud of myself. At least in some way, my body hadn’t failed me and I had a safety net for the future. One week later, I started chemotherapy. The roller-coaster had only just begun.

Lindsay Ruland is a 26-year-old survivor and a native of Baltimore, MD. She currently works as a histotechnician, and aspires to become an oncology nurse specializing in patient navigation and breast health education. It is her goal to raise awareness and to make resources and information more readily available for younger populations of women affected by breast cancer. Come back to the C4YW blog for future posts by Lindsay, or follow her story on her blog: CANCERLAND

Mary Craige: This is Going to be a Great Year!

As the C4YW Blog starts the new year with a plethora of inspiring writers, we welcome back Mary Craige with her January entry. Be sure to  check back each month, as Mary has bravely decided to keep us up-to-date on her fertility planning and treatment after a breast cancer diagnosis at age 34.  Her strong voice and particular story is one of the many that C4YW strives to represent. Be sure to visit the website and register for this year’s event in Seattle!

That is the statement I start every New Year with, along with a list of two or three attainable resolutions. I am not a ‘I want to lose weight” kind of resolutioner because I try to stay fit and eat healthy all year round. My normal resolutions are usually small things, like “make the bed every morning”. Silly things like that are easy and give you a sense of accomplishment.

This month will mark almost three years since my initial breast cancer diagnosis and two years since I completed treatment. It also marks two years of taking Tamoxifen, the drug I have been taking to keep my cancer from recurring. My fingers are crossed that the annual scans and blood work will show that I am holding steady at “No Evidence of Disease” (NED).

It is also the month I’ve been waiting to arrive for almost two years. When my oncologist released me from active treatment in December 2010, she told me, “In January 2013, we’ll start talking about having another baby.”

Mary Craige

Well, its 2013 and I’m ready to start talking.

There is a lot to do over the next two months. I started with a visit to a new reproductive endocrinologist at the fertility practice my husband I am went to in 2010 to preserve my fertility using IVF. This was a ‘getting to know you’ meeting to discuss risks associated with another pregnancy, my fertility status and potential next steps. After a 45 minute consultation and review of my medical history, I left with a plan…that wasn’t much of a plan.

Cancer seems to always throw a monkey wrench into things. Not that this was a monkey wrench, but it was more of a ‘hold your horses’ moment. Although there is no definitive research saying that pregnancy after breast cancer can cause recurrence, doctors are often reluctant to do anything until a survivor has finished at least three years of Tamoxifen. I just passed year two.

Why stop Tamoxifen before three years? It certainly wasn’t a rash decision, or one that my husband and I made overnight. It was an informed decision but it is also a risky one. Tamoxifen wreaked havoc on me, physically and mentally. It helped push me into early menopause, helped to cause osteopenia and osteoporosis and gave me unbearable nightly hot flashes.

Life on Tamoxifen was challenging. While I understand that five years of hormone therapy is best, I often liken the Tamoxifen regiment to a daily exercise regime. We all know that we should do 30 minutes of exercise daily to stay healthy. Doctors have found that daily exercise decreases our risks of some cancers, heart disease and stroke. Do we always take the 30 minute walk around the block or the daily trek to the gym? Not always, but many of us try. That’s how I think of Tamoxifen. Should I take it every day for 5 years? Probably. I tried my hardest to live with the side effects. I took other drug, I pushed myself physically and adjusted my sleep to try and get through the night without a hot flash. Unfortunately, like many young women, I found the side effects to be difficult to mitigate without other drugs or treatments.

Once my scans and annual blood work are complete, I will revisit my options with my reproductive endocrinologist. Until then, the focus is on getting through those tests with a clear bill of health. Hopefully next January 1st, I will continue with the phrase, “It’s going to be another great, cancer-free year”.

Mary Craige is a wife, mother, daughter, friend and breast cancer survivor. Diagnosed in 2010 when her son was seven months old, Mary found blogging to be an outlet for her feelings about treatment, fertility challenges and survivorship. Since finishing treatment in 2010, she rode in two 200 mile Tour de Pink West Coast rides. The Tour de Pink helped her take her body back after treatment and proved that she could thrive after cancer. Mary currently works as a Content Marketing Manager for a large data company. Come back to the C4YW blog for future posts by Mary, and head over to the C4YW site to check out the wonderful programming for this year’s event, as well as the great deals we’ve put together for airfare and hotel prices.

Lindsay Ruland: A Very Happy New Year

Today the C4YW Blog welcomes back, Lindsay Ruland, for the second installment of her monthly series! Check back often to read more into her journey. Here, Lindsay shares with us her feelings about living with breast cancer and celebrating the New Year. Be sure to visit the website and register for this year’s event in Seattle!

2012 was supposed to be my year. I had put my life on hold for years, previously, to focus on establishing my career and completing my bachelor’s degree. I never really felt as though I was able to enjoy my youth due to the numerous “adult” commitments to which I had already devoted my time. While everyone was out dancing or partying or going on fabulous vacations around the world, I was working two jobs, going to night school, and doing my best to hold down a mortgage. This year, I was looking forward to my college graduation as well as a promotion in the laboratory that would allow me more flexibility financially and personally. In April, however, my life hit a standstill, once again, when I was diagnosed with stage III invasive ductal carcinoma at the age of 26.

While my best friend was travelling to Germany, a dream we had weaved together for years, I was going through chemotherapy. While everyone I knew from high school was getting married or having babies, I was questioning whether or not anyone would ever love me enough after a mastectomy to marry me, and if I would even be capable of having a baby after chemo had potentially robbed me of my fertility. There would be no fabulous vacations abroad, new cars, wedding bells, or baby bottles for me this year.

While others seemed to be living fully, I felt isolated, alone, and trapped, sinking deeper and deeper into the throes of cancer treatment. I was angry – this was supposed to be my year, after all! Why did I have to endure yet another roadblock before I could be free to fully live my life? I found myself incredibly bitter and envious of others who were so careless and reckless with their lives, and didn’t appreciate their bodies or treat them with the proper respect. After all, they didn’t have cancer. I’d walked a very narrow and cautious line my entire life to avoid things of this nature, and somehow, it had happened to me anyway. After much reflection, I found myself growing and shaping into something much more than fabulous vacations, new cars, wedding bells, and baby bottles. Life had now presented to me a much grander opportunity to live more fully than any of those things could.

Lindsay Ruland

I learned more about myself than some could possibly learn in a lifetime in a matter of months. I came to love and respect myself more than I ever had previously, to allow myself to make mistakes and to give myself a break every now and then, instead of being such an up-and-at-‘em perfectionist. I found the good in the simplest gifts that each day brought, and was grateful for every morning that I woke up, kicked my legs over the side of the bed, and planted my feet into the floor. Despite all of the difficult things I have had to endure, I have never been more grateful for or happier with my life. Each day is a gift, and even though there may have been rough patches, I am happy to be alive every day. I don’t think I would have ever said that in the past, when I was too busy getting hung up on the go-go-go and the now-now-now of average everyday life. This cancer has changed me in many ways, and for much of it, I am grateful, as odd it may sound. You grow into a fuller human being with deeper realizations about the world and about life. So, while my peers were growing their careers or their families, I was growing myself.

In a way, 2012 was my year. It was not so much about achieving milestones in life as it was about simply living. When you are face-to-face with your own mortality, something many of us may not even put much thought into as younger adults, something changes inside of you. And while I have lost my breast, my hair, and possibly my fertility, what I have gained from this experience is far greater than any of those things. I am stronger. I am unstoppable.

My radiation treatments will come to an end on December 31, 2012, which marks the end of this very grueling year and my very grueling treatment. Despite all of the chaos, I managed to graduate college with magna cum laude honors, work full time throughout the entirety of my treatment, complete a new certification, get a promotion, and show breast cancer who is really in charge of this life. The fabulous vacations and new motorcycle are on their way. Now, I’ve just got to work out the wedding bells and babies. 2013 will be my very happy new year, and my very happy new me.

Lindsay Ruland is a 26-year-old survivor and a native of Baltimore, MD. She currently works as a histotechnician, and aspires to become an oncology nurse specializing in patient navigation and breast health education. It is her goal to raise awareness and to make resources and information more readily available for younger populations of women affected by breast cancer. Come back to the C4YW blog for future posts by Lindsay, or follow her story on her blog: CANCERLAND

Mary Craige: Call it a Woman’s Intuition

This month, the C4YW Blog welcomes Mary Craige as one of our newest recurring writers. Be sure to  check back each month, as Mary has bravely decided to keep us up-to-date on her fertility planning and treatment after a breast cancer diagnosis at age 34.  Her strong voice and particular story is one of the many that C4YW strives to represent. Be sure to visit the website and register for this year’s event in Seattle!

I always knew I would be diagnosed with breast cancer. Call it a woman’s intuition. Call it an insane hunch, but I always knew it was my fate. My mother was diagnosed at age 51 and my paternal grandmother lost her battle with the disease in her 70’s. But I never imagined I would be diagnosed with the disease at age 34, when my son was seven months old.

Unfortunately, some women hear the words, “you have breast cancer” and immediately think it’s a death sentence. When my surgeon delivered the news, my first thoughts and words were not the typical response. My reply was simply, “I can’t have breast cancer; I want to have another baby!” My surgeon, taken back by my reaction, immediately began talking about five years of Tamoxifen, chemotherapy and additional ‘options’, ignoring my response. I chalked that up to his inability to grasp where I was in life. I was a new mom with an infant at home. I had just returned to work from my maternity leave.  My son had just started sitting up. How could I have cancer?!  Driving home, I was still stuck on the notion of having another baby. This desire was a catalyst for many of the decisions I made over the next two months.

My husband and I immediately began researching our options to preserve our chances of having another baby. My medical oncologist told me that at my age and with my pathology, we needed to throw the ‘big guns’ at my cancer: six rounds of Taxotere, Adriamycin and Cytoxin (TAC), 34 rounds of radiation and five years of Tamoxifen. Chemotherapy gave me a 50/50 chance of becoming permanently infertile. This statistic scared me. As an only child, I always dreamed of having a big family and I didn’t want cancer to put an end to that dream. We decided to meet with a reproductive endocrinologist prior to beginning treatment to determine what our options were for fertility preservation.

My medical oncologist and reproductive endocrinology became a team and worked to determine a plan that would not jeopardize my health or treatment plan. We talked through options and decided to try and create as many embryos as possible, in only one cycle. We were very lucky; our medical team created multiple, viable embryos through one cycle of IVF. This limited my exposure to additional hormones and allowed me to start chemotherapy on schedule.

Two days after the egg retrieval procedure, I had my port placement surgery.  Three days after surgery, I had my first chemotherapy infusion. Life was moving too fast for me to fully appreciate the risks and dangers associated with a future pregnancy. At that point, my focus was on beating cancer and moving on with my life.

Almost three years later, I am ready to revisit my options for carrying another pregnancy. This decision is scary, exciting and risky. My cancer was estrogen receptor positive, had a high Nottingham score and a high Ki67 score. Layman’s speak for this pathology:  my cancer grew quickly and was trying to move beyond the breast. So while my desire for another child is still strong, my fear or recurrence and metastasis are always there, influencing my decisions.

For many, January is the month for ringing in the new and getting rid of the old. For me, it’s the month for my annual mammogram, blood work and breast MRI. But this time, I will also have a consultation with my reproductive endocrinologist to determine my fertility status and what my options are for another pregnancy. The anticipation of the annual scans and tests are always accompanied by a great deal of anxiety and stress. This year, I am strangely calm and at ease with this obligation. My anxiety now is due to what lies ahead, and what may or may not be possible.

Mary Craige

Mary Craige is a wife, mother, daughter, friend and breast cancer survivor. Diagnosed in 2010 when her son was seven months old, Mary found blogging to be an outlet for her feelings about treatment, fertility challenges and survivorship. Since finishing treatment in 2010, she rode in two 200 mile Tour de Pink West Coast rides. The Tour de Pink helped her take her body back after treatment and proved that she could thrive after cancer. Mary currently works as a Content Marketing Manager for a large data company. Come back to the C4YW blog for future posts by Mary, and head over to the C4YW site to check out the wonderful programming for this year’s event, as well as the great deals we’ve put together for airfare and hotel prices.

Sarita Jordan: C4YW, A Place Where I Am Not Alone

This post was originally featured on the LBBC Blog on February 9th, 2011. Here, LBBC volunteer Sarita Jordan shares how she found strength and purpose through C4YW, even through some extraordinary circumstances.

I was diagnosed with breast cancer in September of 2005. I was 36 years old. Breast cancer was an event in my life that I had no idea was coming. I didn’t have history in my family. I knew nothing about the disease. I was aware of monthly self-breast exams, but that’s about it. When I was first diagnosed, I was told “it probably isn’t breast cancer because of your age.” I am currently a 5-year breast cancer survivor, and counting…

After such an ordeal, it had become apparent that I wanted to dedicate my life to helping other women cope with a breast cancer diagnosis and all the unpleasant episodes that come along with it. When I was in treatment I looked for any and every kind of help because I didn’t really have a strong support system. I developed a relationship with the oncology social worker at my hospital. I later learned about Living Beyond Breast Cancer (LBBC) and the Conference For Young Women Affected by Breast Cancer (C4YW) — finally, a venue where I could express age-appropriate concerns. Because I was 36 at the time, this was great!

As a result of the effort to make it to my first conference in 2007, every year I look forward to this event and the source of help available to me. I will never forget the first conference that was held in Arlington,VA. I am a parent of 4 children, one of which I became pregnant with after breast cancer treatment.

C4yw, annual conference for young women affected by breast cancer, YSC, LBBC, orlando, florida

Pregnant, bald and excited, I drove in a snow storm because I was determined to be at this conference. The conference in Jacksonville, Fl., had a workshop about fertility issues that young women affected by breast cancer face. The wonderful speaker described her diagnosis at a young age and how she considered maximizing her chances of future pregnancy, knowing the risk breast cancer treatment had on the ability to conceive. Although my story was slightly different from hers, I was able to offer my experience, which was a sense of hope to some of the other women that were present in this particular workshop.

Attending C4YW keeps me up-to-date with the latest treatments, workplace protocol and rights, medical research, healthcare reform news, etc. I wouldn’t miss it for the world. I look forward to meeting up with friends that I met from other states over the last 5 years since I’ve been attending the conference. More importantly, though, I look forward to volunteering and sharing my story, in the hopes that it would encourage someone else. Last but not least, the group photo! The photo is especially important to me because as we all gather — all races, creeds and colors — I am reminded that I am not alone.

Although there are some friends that I have lost to this disease, I don’t get discouraged. This too reminds me that life is precious and we have to just live, love and laugh. Tomorrow is not promised to anyone.

Thanks LBBC and YSC for such an event. This experience compares to no other.

This year’s Annual Conference for Young Women Affected by Breast Cancer (C4YW) is being held Friday, February 22 – Sunday, February 24, 2013 in Seattle.  If you, like Sarita, are looking for a network of women who share your similar concerns as a young women affected by breast cancer, C4YW may be a good place to start.

Welcome to the C4YW Blog!

Hello, and welcome to the new and improved C4YW blog! This is forum for discussion, exploration and discovery about what the Annual Conference for Young Women has meant to you during your diagnosis, treatment, and recovery. At C4YW, we like to emphasize the camaraderie and connection that attendees experience while also receiving the most up-to-date health and wellness information.

Here on the blog, we’d like to hear from YOU! Firsthand stories that come from the heart are what C4YW is all about. Also, we’ll be featuring entries from our 2013 presenter line up, so that women interested in attending can get a sneak-peek at the plethora of information available at this 3-day event.

While we line up the new entries to begin filling this space, please enjoy reading some of the C4YW-inspired entries that made their way on to the LBBC Blog.

Happy Blogging,

Rachel, your faithful “Blog Steward.”