I Talk To Strangers…You Should Too!

Long time LBBC blog contributor, RANDI RENTZ, graduated with honors from The Johns Hopkins University with a Masters degree in Special Education. She was an editorial assistant for a publishing company in suburban Washington,DC before becoming a special education teacher in a school district outside Philadelphia, PA. Randi currently is an Asperger’s Support Teacher for grades kindergarten through fifth. Presently, Randi has her own consulting company for children on the Autistic Spectrum where you can see her work at   www.helpforaspergers.com. She is a proud member, supporter, and blogger for many breast cancer organizations and never leaves the house without diamonds. Visit Randi at her web site at www.randirentz.com. Be sure to check out the teaser for her upcoming book “Why Buy a Wig…When You Can Buy Diamonds!”

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Call me crazy, but I look forward to waiting in line, and just about any opportunity to shoot the breeze with people I don’t know. I’m chummy with the guy who pumps my gas, (the only gas station nearby where they still pump gas for you), still exchange holiday cards with my 4^th grade elementary school teacher, and the other day I spent a solid hour gabbing with an 81-year old woman I met at the tailor’s while having my pants hemmed.

I’m now a life-long, die-hard people person. I never used to be, though. In fact, I never enjoyed chatty encounters with people I didn’t know…until cancer. I wasn’t hostile before breast cancer.  Every day I had pleasant exchanges with strangers and acquaintances—an enthusiastic “Morning!” or a friendly “Have a great day!”  Such moments continue to be life-affirming, yet, prior to breast cancer, they were blessedly brief.

On-the-fly updates from people I’ve barely met used to drain me. Seriously.  I always felt obliged to respond with genuine emotion, to pay real attention. I would fake outrage or concern, with a performance that was definitely Oscar worthy. That meant stopping whatever I was doing, and force myself to focus. Since my laser-beam concentration was always sensed by the people stopping me, their details got longer and longer. Oy, vey! I felt trapped like a mouse in a maze.

Did breast cancer make me a people person? Well, I think it made me more aware of the little moments in life that make up the big moments. I now enjoy being a true people person—even though I’m inclined to dislike anyone who describes himself/herself this way. Go figure. I digress, sorry. Anyhoo, hear me out. Lifting your head and engaging with whoever happens to be standing next to you is worth the effort. It’s nice to see people smile and to genuinely smile back. It really feels good and refreshing. You should try it.

For one thing, you never know when you will receive priceless advice.  The 81-year-old cautioned me to get in good with my son’s future wife and to always take the dog out for an evening walk to do “its business.” Little did she know, I have no children and own two cats which use a litter-box. Needless to say, I felt it worthy to file away her words of wisdom. Maybe a stepson and a dog are in my future. Who knows? I digress. Sorry. When I left the fitting room, fiddling with the waistband of my pants, she said, “With posture like that, who needs Spanx? Coming from a stooped octogenarian, her words felt like a wake-up call to enjoy my youthful existence.

I believe my world is bigger with my random encounters. My brushes with strangers bring me the thrill of the unexpected, to glimpse a world I used to brush off and otherwise never see or appreciate. In the frenzy of life, with intense money, work and time pressure, I honestly didn’t have much conversational energy to spare.

Now, I think of it as a habit as “meeting new people,” even if I never see them again. My encounters with strangers bring me back to a place where I long to be. I never had grandparents, because they died before I was born.  But now I cherish chance meetings with people of all ages, especially older people. I find their perspective to be rather eye-opening.

Instead of rolling my eyes, I appreciate the interruption. I am so grateful for the little things in life. I now understand what being a warm person means.

And now, onto the Spanx…

Diffficult Changes Can Make You Strong

I would like to introduce myself, my name is Lindsay Beckmeyer and I am the new Marketing and Public Relations Coordinator here at Living Beyond Breast Cancer! Going forward  I will be managing the LBBC blogs and I’m very excited to share the stories we receive with all of you! That being said, Cameron Von St. James is an avid reader of our C4YW blog and he approached me about writing a piece to share his experience as caregiver for his wife who was diagnosed with Mesothelioma in 2005. While we focus on breast cancer, I felt that Cameron’s story would be appropriate to share for our readers who are currently in the position of caregiver because no matter the specific diagnosis the role of caregiver can be quite similar. Here is Cameron’s story…

It’s hard to realize just how much cancer can change your world until your own family is confronted with a diagnosis.  My wife Heather and I were proud parents of a new daughter, Lily, and we weren’t prepared to receive the news that Heather had mesothelioma on November 21, 2005.  I was now a caregiver to my wife and daughter, a job that I had not been prepared for by anything else in my life to that point.  It felt like chaos was setting in.

As our doctor discussed the disease with us, he provided us with some choices for treatment.  We would need to see a specialist, and we could opt for a local university hospital, a regional facility that didn’t yet have a good mesothelioma program, or a reputable specialist in Boston.  The disbelief in my wife’s face was heartbreaking, and as I looked at her and waited for some sign of interest in any of the three choices, I realized that she was paralyzed by shock and fear.  I told our doctor, “Get us to Boston!”

Our next two months were rough.  The familiarity of our daily routines was gone as we devoted all of our attention to Heather’s medical needs.  She couldn’t work after the diagnosis, and we had both been accustomed to our full-time schedules prior to this.  Now, we were arranging child care for Lily so that we could deal with the medical steps we must take.  I was afraid of losing my wife to cancer, worried that we would lose everything in the process.  More than once, I broke under the pressure and dissolved into tears in private, but I didn’t let Heather see the worst of my meltdowns.  I needed to be strong on her behalf.

However, not all of this experience was bad.  Through our struggles, we encountered so many positives that helped pull us through.  First and foremost was the community that rallied around us in our time of need.  Friends and family came out of the woodwork offering help and support.  We were so touched by their generosity, and it was this kindness that allowed us to make it through the most difficult times. Complete strangers even provided assistance and support.  Comforting words were priceless, and financial help was certainly appreciated, as the bills kept piling up and our income was significantly lowered.

When you are faced with the overwhelming impact of cancer, take advantage of every little bit of help available.  People who care will sincerely offer.  Make the most of their support. The help and support of our community was invaluable in our fight with cancer.

Second only to the love and support of our community, our greatest tool to help us through was hope.  Throughout all of the struggles, all of the bad days and moments of fear and despair, we never allowed ourselves to give up hope for a better tomorrow.  A positive attitude and outlook can go a long, long way.  My wife has frequently said that she sees life through rose-colored glasses.  This positivity was key to her survival, as it encouraged both of us to never give up, even through the toughest times.

Heather’s mesothelioma treatment over the following months would drive her cancer into remission, and she has been cancer free to this day, over seven years since her diagnosis.  I grew and learned a lot during this time, and I can honestly say that being my wife’s caregiver has made me a better man.  Now, Heather and I hope that by sharing our story, we can inspire others in their own daily battles, whether it be cancer or any other obstacle in your way.  Never give up hope, and never stop fighting for the ones you love.

“Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose. He, along with Heather and young Lily, had their world’s turned upside down when Heather was diagnosed with malignant pleural mesothelioma, just 3 1/2 months after the birth of his only child. When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma. It was his determination and refusal to compromise on doctors or treatments that led them to Boston to receive radical surgery from esteemed mesothelioma surgeon, David Sugarbaker. Heather continues to thrive 7 years later.

Like Heather, Cameron is passionate about bringing awareness to mesothelioma and the dangers of asbestos exposure. It is his hope that sharing his story will help others those battling cancer and their caregivers who provide them care and guidance in their journey.”

LBBC’s Triple-Negative Breast Cancer Focus Groups Need Participants!

Do you have triple-negative breast cancer, or know someone who does? LBBC is planning several focus groups to learn about the needs of women living with triple-negative breast cancer. Groups are planned in the areas of Chapel Hill, N.C., on April 10; Philadelphia, Pa., on April 12 and April 13, (focusing on metastatic breast cancer); and San Francisco, Calif., and Indianapolis, Ind., the last week of April (dates TBD). Groups last 90 minutes, and participants receive a $25 gift card for their time. If you are interested in participating in a focus group, please contact us ASAP at publications@lbbc.org and let us know which location interests you. We will be in touch with more information!

Fear of the Unknown

C4YW blogger Vallory Jones is a freelance writer and breast cancer survivor living in Austin, Texas. A self-professed 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.” You can read her personal blog at victoriousval.wordpress.com.

I received my diagnosis on Monday afternoon, and by Wednesday morning, I was en route to the oncologist. Dr. Patt came highly recommended, and I felt lucky to score such a last minute slot. The receptionist mentioned the doctor would be leaving for the airport immediately after our meeting, and after having gone to the wrong address already, I frantically punched it back into my GPS, racing to beat the clock. My Kia Soul was a black blur as I zipped in and out of Austin traffic. I couldn’t allow this cancerous tumor to stay in my body any longer than I absolutely had to, and the thought of missing my appointment brought on waves of nausea. I tried to will the tears to stop, but they streamed down my face until I was sobbing full force. I pulled into the parking garage and collected myself. “Wow, you’re a mess,” I told myself, but looking back, I was just a cancer newbie. I wasn’t properly equipped to process this turn of events.

Things sure changed in a hurry. One minute I was planning parties and social hours and the next I was sitting in a doctor’s office gearing up to beat breast cancer. I looked around the waiting room. There were other women who had no hair, and I trembled. “We all have cancer,” I realized. It was an unnerving feeling, and though I physically felt fine, I realized for the first time that something inside me was actively trying to kill me. Words can’t describe that realization. It changed me.

The meeting itself was pleasant enough. My doctor entered the room clad in a grey tweed skirt and jacket. I looked down, and my attention settled on her fashionable, black leather boots. Though I wasn’t aware of her credentials yet, her ensemble impressed the heck out of me. Kelsey, one of my friends, took notes, and I was glad she came along because it was amazing how little information I actually retained. Every time Dr. Patt spoke of the cancer, I felt a rush of heat overwhelm me, and it seemed like maybe I should lie down or at least fan myself. A couple of times I swore I was going to vomit, but that never came to pass.

Invasive Ductal Carcinoma. Most likely Stage 1. Fast growing. ER+/PR+. Lots of medical jargon made way into Kelsey’s notes, and at that moment, it was quite clear that there was no mistake. I really did have cancer, and no amount of disbelief could ever change that. Dr. Patt’s demeanor was reassuring, but my anxiety worsened when she uttered acronyms like MRI and CT scan. Then the words “bone scan” tumbled out of her mouth and slapped me hard in the face.

“Bone scan?” I squeaked. “What? This could be in my bones?” She seemed to think that was unlikely, but talk of these tests put me on pins and needles. I remember clearly the one thought I had for weeks, “I hope that I have a chance to fight this. What if it’s spread and I’ve missed the window?” Now, as a more experienced survivor, I realize that even at advanced stages, one can still live and fight cancer, but as someone who’d never even had anyone close to me diagnosed, I feared the worst. Add to my fears the possibility of chemo, which couldn’t be known, of course, until further testing. My head threatened to explode. Part of me was ready to jump off the table and get started while the rest of me wanted to bury my head in the sand and pretend this wasn’t real. I knew I couldn’t, though, because every day I waited, I feared my tumor was growing, or even worse, spreading to other places.

There aren’t adequate words to capture how I felt during those first weeks. I waited. I wondered. Would I see another birthday? Would I get another Christmas? My days were filled with tests and alternated between moments of strength and desperation. The poking and prodding made me feel like a science project, and if I never see a hospital gown again, it will be too soon. Like every other survivor will tell you, any modesty I had prior to cancer was certainly lost within the first week of my diagnosis. Getting up each day, putting one foot in front of the other, and making myself go to appointments was harder than anything I’d ever had to face. I’m sure that’s why 16 months later, I feel invincible and like I should wear a cape every day to work, the grocery store, or the gym.

As far back as I can remember, I’ve always had role models. Now here I am, my own hero. Quite honestly, that feels pretty good.

A NY State of Mind – Part II

Jennifer 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. 

Jen attending C4YW 2013 at the end of February, is pictured below with Living Beyond Breast Cancer’s Associate Director of Marketing, Kevin Gianotto.

We introduced you to Jen last month in her debut blog.  Today, she continues her story. 

It was my Dr. I could sense she was nervous and didn’t know how to really tell me the news but she eventually told me my results were positive and then in not so many words she says to me….”by the way you have cancer Jen.”

My heart sank. WHAT?! Stage II B Breast Cancer and it spread to under my arm to my lymph nodes.

I didn’t cry. I didn’t get emotional. I was just numb. I can tell you the first thought I had was vain and it was absolutely ridiculous but I thought about how I was going to lose my hair. That struck a huge nerve with me and I denied that for awhile. I just sat there dumbfounded. Then I had to call my parents and my brother to tell them the news. It was probably the worst day of my life. I then had to slowly tell all my friends one by one. It just was not a good time.

After the news everything happened almost immediately. Before Thanksgiving I had to get my port put in, and then by Black Friday that was my very first chemo session. It was all very scary and everything was already planned out for me. I had to do MRI’s, CAT scans, Echo-Cardiograms, more testing, you name it. By the second chemo session I was starting to get nauseous and sick. I dreaded coming back in the next day when I felt the worse to get my shot to boost up my white cell counts. I just wanted to hibernate.

Then my hair started falling out in clumps one day and I lost it. That was the first time I ever cried about my diagnosis. That made everything real. My beautiful hair that I had pride and joy in and had fun dying and changing and was such a big girly part of me was now being yanked away and dispersed all over my pillows. That was the toughest time for me. I could withstand the strong chemo and the blood tests and I never threw up once in all the 16 chemo sessions I had to do, but then I cried like a baby the minute my hair fell out. Not long after that I got annoyed with the shedding, I got over my fear and had the special guy in my life shave it all off. I found fun and happiness in wearing and buying all types of wigs so I could hide my baldness and sickness from people. It was like my own little secret.

In between all the chemo, I had to find new health insurance which was beyond stressful. I had my first 2 chemo treatments with one Dr. in one area and then I had to jump ship and continue at my local hospital with a brand new team. On top of all of this I also had to move to another apartment when I was physically at my weakest so that added a lot of crying fits and craziness. I also lived on a 3rd floor apartment building so coming home after chemo was a huge challenge in general. My parents were nice enough to let me crash at their house while I was recovering from the worse of the chemo. Thank goodness my current apt is on the ground floor!

I finished all my chemo in May 2012, and then in June I had a left side mastectomy done with tissue expanders placed inside and got fills from my plastic surgeon every couple of weeks. I also committed myself to doing the Komen 3 day walk with a close friend one month after surgery and it was a wonderful experience to be able to physically do that and accomplish something with so many other women that have been affected by Breast Cancer. I also got genetic testing done and I am Her 2 positive so I decided that I am going to get rid of my right breast as well. I moved on to doing 28 rounds of radiation and finished that back in Oct. 2011. As of right now I am waiting for reconstruction surgery on my left breast, the removal of my right breast and full reconstruction on both. I also just started on Tamoxifen alongside receiving estrogen blocking shots every 3 months for the next 5 years. Whew!

I definitely couldn’t have gone through all of this in one piece without the support of my friends and family. They have sat with me patiently during chemo and endured my crazy mood swings!
Getting diagnosed with breast cancer at age 31 was definitely not a fun experience. It challenges your mind and puts your body through hell! Emotionally it’s been very hard to move on with life but I am doing it one day at a time at my own pace. It’s hard to be positive all the time but I refuse to let breast cancer define or defeat my spirit. I am proud of where I came from and how I have picked myself up (with lots of help of course) and I want to be able to help others get through it as well.

I know somewhere where there are bright rainbows and sunny skies, my “yan yan” is watching over me every day and smiling at my newest crazy colorful and ridiculous wig! She is my “kindred spirit.”

Jen will be back in the coming weeks as she tells her story leading up top breast reconstruction.  And, be sure to follow her personal blog to learn more about this amazing woman’s journey beyond her diagnosis. 

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.

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 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

Jennifer 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!

I 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.