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. 

Natalia Valencia: My Treatment

As C4YW is upon us (this weekend, in fact!), The C4YW Blog welcomes back  Natalia Valencia, our voice from outside of the US in Columbia.  Her strong voice is one of the many that C4YW strives to represent, and we are honored to know that C4YW has a growing reach to women affected by breast cancer. We can’t wait to see you all at this year’s event in Seattle!

Before I jump into telling you about my treatment, let me tell you a bit about how I found out about it. I was the one that discovered my tumor. It was while I was taking a shower. I was simply putting some soap on when I felt something in the upper part of my right breast. I don´t know why, (I had no family members who had suffered from cancer, and was not very familiar with the disease), but I immediately knew something was wrong. Even though I knew that, I also “felt” that I was going to be fine.  I think that feeling that I was going to get through it was very helpful, in the sense that I didn’t panic. So, I came out of the shower and told my boyfriend (we were living together at the time, but not married yet) about the lump. He told me not to worry, that it was probably nothing, but I told him that I knew we had to prepare.

I started getting all the tests. I didn’t have a mammography; my gynecologist recommended I get a breast echography, and from there they asked me to get a biopsy and then the diagnosis was confirmed. I turned 32 and that same day I got the results. I continued with the exams. I remember being especially nervous when they did the bone scan, since I thought it would be very painful if maybe the cancer had spread there. Fortunately after all the tests, (around 20 days), I started chemo. The first 3 rounds were done each one with a waiting period on between of 21 days. After the first three rounds, the tumor was the same (It didn’t grow but it didn’t shrink) so the doctor changed the medicine. I was very relieved when I knew this was an option, I guess what I thought was “this is it”, but as I tell people today, it is very important to understand there are different options, not just one way to treat. In any case, the second medicine they did the chemo with did work, so I had like 3 rounds of chemo (divided 1 dose in three weeks). After that, we waited for a month in order for me to raise my immune system, and we went ahead with the surgery.

The most important thing I can tell someone that asks me about my experience is that you have to listen to yourself. You have to collect information, investigate your choices, but you have to do what you want to do. The reason I emphasize this is because you have to be very comfortable with your doctor.Natalia Valencia

When I was deciding about the surgery, I met a plastic surgeon, so I told her that I wanted to look good after the surgery, and the first thing she told me was that that was not important, that I should be concerned with my health, not my looks. I was SO angry. There I was, only 32 and the doctor didn’t even consider the esthetics. Well, I switched doctors. The first thing my new doctor told me was that the most important thing about my surgery was that I was happy with the esthetic outcome. I also had to stand my ground regarding what I wanted. My husband and Doctors wanted me to keep my breasts. I understand their position, but I felt that I had to get a double mastectomy. I didn’t want to take any risks. I did what I wanted, I had both of my breasts removed, and I had implants put in, and muscle from the back covering the implants. And then, a year later, I got the nipple reconstruction. My breasts look beautiful. I am not kidding. They may not be my natural breasts, but the surgery was done beautifully, and with great results, so I have no problem with them, I actually show them to women who tell me they are afraid of the procedure.(My husband is not to fond of this behavior) J

After the surgery, the recovery went well, and then I had more chemo rounds and also rounds of medicine for my HER2 2+. My treatment was over on January 2011, and I am now on Tamoxifen and have to be for 3 more years and I have heard than in some cases even longer.

I know every story is different, but I wanted to say that even though it is difficult, and it changes you for the rest of your life, sometimes it is not as dramatic, painful or difficult; it is a hard experience, but a manageable one.

Natalia Valencia loves life and learning,  She also wants to share that she loves her husband, cats, dog, family, friends, music, books, art, humor, ideas and the internet. Be sure to check back to the C4YW Blog for read more about her very specific viewpoint, as a young survivor from out of the country, and you can also check out her personal blog,here. You can find Natalia on Twitter at @natyblooming. 

Moving Forward

Mary CraigeMary 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. 

January turned out to be a pretty good month. A clear mammogram and breast MRI puts me at exactly two years out from treatment and over the dreaded two year cancer hump. After a contentious consultation with my oncologist, I was given the all clear to go back to my reproductive endocrinologist for the first round of blood work and a pelvic ultrasound.

Breast cancer has a funny way of derailing the best laid plans. When my son was born in 2009, my husband and I knew we wanted to have another child within two years. Breast cancer caused us to push that timeline out indefinitely. Over the last two years, breast cancer created a host of other problems, such as osteoporosis in my hip and neck, osteopenia in my lumbar spine, joint and bone pain and a host of other ‘survivorship’ issues. Unfortunately, it has also affected my fertility.

This was confirmed during my follow up visit with my reproductive endocrinologist last week. We knew from previous blood work that chemotherapy had put me into chemically-induced menopause. This type of menopause is very common for women who have Doxorubicin (Adriamycin) as part of their chemotherapy cocktail. In the two years since I completed treatment, my Follicle Stimulating Hormone (common referred to as your FSH level) has not returned to the normal, pre-menopausal level. A high FSH, along with a low estrogen level, represents limited or no ovarian function. Shorthand for all this: I am infertile.

Don’t stop reading this blog entry yet – these test results do not mean it is the end of the road for our dream of a larger family. We knew this would happen. Before you start chemotherapy, doctors throw around percentages and probabilities for things like recurrence, infertility, neuropathy and other possible effects from treatment. I was given a 50% chance that my fertility would not be impacted. For me, 50% was not a high enough percentage to roll the dice and chance it. Luckily, I was also given a 95% survival rate at the 5 year mark. So we created and store embryos before I began treatment. Those frozen babies are what I’m hanging onto right now.

All we can do now is move forward. The reproductive endocrinologist is going to present my case to several other doctors in his practice this week. He wants to be sure that we exhaust all options that do not put me at risk for recurrence. Until then, I just need to hang onto hope and stay positive that a future baby will be possible.

A NY State of Mind

New Year's EveJennifer Yong, 33 was diagnosed with Stage IIB Breast Cancer in 2011 and is currently awaiting full reconstruction surgery scheduled for the Spring of 2013. A graduate of Emerson College in Boston, MA with a BA in Visual Arts Jen loves good jazz, hip hop, art in all forms, being crafty, eating good food and random makeover and reality television shows. You can learn more about how Jen is learning to navigate her “new normal” by visiting her blog. Jen will be attending C4YW 2013 at the end of February.

I had literally just gotten laid off from work.  It was all of a sudden and without any type of warning.  Just BAM! Goodbye job of 5 years. That was the first big major shock I had back in October/November of 2011. I had come from working at a local Art Museum for a few years to working at a local Art college and haven’t skipped a beat in between all my life so now the thought of not having a stable job was going to be a big adjustment. But it was okay. It would be a nice break. I justified that it would be a great time to find myself again and rediscover my passions. I could deal with living off of unemployment humbly for a couple of months and then maybe find something I was really passionate about and wanted to pursue.  In my head I was pretty excited for the upcoming changes. I had also worked part time at a group home simultaneously for about 3 years and played with the idea of going back to school and maybe getting masters in art therapy (the applications were all already half filled out) and now I would have the time to maybe pursue that route.  But of course, life had a different plan for me.  And one I was definitely not prepared for at all.

I knew there was a weird lump around my left breast months ago. Even before the summer.  I always thought it was nothing and it felt a bit hard and abnormal around the nipple area but the thought of getting it checked out never crossed my mind. Even though Cancer runs in my family- my grandmother (whom I affectionately called her “yan yan”) on my dad’s side was diagnosed with both breast cancer and ovarian cancer later on in her life and eventually passed away from various complications with treatments and her body shutting down and the cancer coming back. Even as all of this unfolded before me, I still never thought it would ever happen to me and that it would affect me in any way. I was oblivious. As my grandmother was going through her treatment I somehow blocked it and never dealt with her sickness. That was my way of coping with the pain of seeing what she was going through, I just chose to ignore it and pretend it wasn’t happening until it was too late. I didn’t even understand at that age what chemo really meant and how weak it made my grandmother.   I just remembered she still cooked us fantastic dinners at her place despite her weakness. This is something that affects me every day of my life and I grew to accept and understand much better in my adult life.

I remember the phone call pretty clearly. I happened to be away in NY for the day with a friend to just get out of town and to have some fun. New York has always been my mini escape from everything and everyone. I am a total city girl and the art and music and just the pure adrenaline of the city itself has always enticed me and helped me to get out of my own mind. It was a short bus ride away from Boston and just being there and getting lost in the sea of colors and people is wonderful! It just replenishes my soul and makes me feel alive again. So it’s ironic that NYC has been a part of my journey.   It was sort of warm out and I remember I had my first official  NY hot dog from a street vendor that day despite the fact I’ve been there more times than I could count! Funny how you remember the most random things when something traumatic is about to happen. A couple of days earlier I had gone for my annual physical. It was mainly because I was curious about the lump and also because I needed to use up my health insurance before it ran out by the end of the year.  I told my doctor about the area around my breast and she took a quick look at it and given my age told me I had nothing to worry about and that it was probably just a cyst that needed to be drained. I was relieved at the news but she told me she would schedule a mammogram just in case.  Long story short I went in for the mammogram and it was the most awkward exam I had to deal with!  After a lot of poking and prodding they told me they saw something but couldn’t tell what it was. I started to feel some dread creep in. They then asked if I would do a biopsy while I was there so they could take some samples out to see what was wrong. I agreed and with a fine point needle I had to wince in pain as they stuck the needle in my left breast and then underneath my left arm so they could get some of the lymph nodes. I was in pain and discomfort the day after but I hoped for the best.  I figured it would be a few days before I got the results and sure enough, the very morning I got back from NY- I was back to my apt and had just sat on my bed when my phone rang.

I immediately knew in that very moment, my life would be forever different. I just knew.

Jen’s story continues next week.  Can’t wait?  Then be sure to follow her personal blog to learn more about this amazing woman’s journey beyond her diagnosis. If you’re coming to C4YW, the Annual Conference for Young Women Affected by Breast Cancer, be sure to say “hi” to this truly inspirational woman.  For conference details, visit C4YW.org.

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. 

Emily Cousins: Looking for Links between Cancer and the Environment

C4YW is just a few weeks away, and we are excited  to see all of the strong, thriving young women who are planning to attend! Today the C4YW Blog is happy to introduce Emily Cousins, another young woman working hard to better herself and other survivors for her first entry! Check back  as Emily shares with us her insights on the studies of the environment and breast cancer. Be sure to visit the website and register for this year’s event in Seattle!

Emily Cousins

I was diagnosed with breast cancer when I was 32 years old and in the ninth-month of my first pregnancy. I urged my doctors to give me aggressive treatment because I wanted to live for my new baby. Since then, I have religiously done follow up exams, had screenings, and undergone biopsies. Now, 10 years later, I am considering removing my ovaries to reduce the amount of estrogen in my body.

I try to do all that I can to take care of my body, but through my work for a national environmental organization, I have learned that not all cancer risks are internal. Some come from the air we breathe, the water we drink, and the consumer products we use in our homes.

Breast cancer has been the rise in America in recent decades. Women born in the 1960s are twice as likely to get breast cancer as their grandmothers. And compared to older women, young women tend to face more aggressive cancers. Many factors contribute to the disease, including lifestyle, reproductive history, and genetic mutations. But increasingly, researchers have found chemicals that disrupt the hormones in our bodies can increase the risk of breast cancer.

And unfortunately, those chemicals are all around us. BPA, for instance, is a chemical commonly found in plastic bottles, canned foods, and baby toys. It is also a synthetic form of estrogen, and estrogen feeds breast cancer. BPA has been shown to cause normal breast cells to behave like cancer cells, and it has also been linked to prostate cancer, lower sperm counts, and early puberty. And yet BPA is so ubiquitous that more than 90 percent of Americans have residues of the chemical in their bodies, according to the Centers for Disease Control.

BPA is just one of many hormone disrupting chemicals in our lives. Polycyclic aromatic hydrocarbons (PAHs) are commonly found in soot—the air pollution caused by burning coal, oil, and gasoline. Many PAHs mimic estrogen and have been shown to cause mammary tumors in rats and to interfere with DNA repair in cells.

All the women coming to C4W know the anguish of a breast cancer diagnosis, and we have fought to so hard to vanquish this disease. It doesn’t seem right that we could endure treatment only to increase our risk simply by breathing the air or drinking from a plastic bottle.

I am looking forward to gathering with other survivors at C4W who are committed to reducing environmental hazards. Several experts speaking at the event will help point the way to a healthier, more sustainable future for all of us.

Emily Cousins writes about public health and environmental issues for NRDC. She also blogs about life after cancer for young people at stupidcancer.com. She lives in Seattle with her husband, son, and the daughter she had after cancer.