I Talk To Strangers…You Should Too!

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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 4th 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…

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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!

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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!

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. 

Lindsay Ruland: Friday the 13th

Today, we welcome Lindsay Ruland as she joins the ranks of our C4YW bloggers. Check back often to read more into her journey, as she discusses diagnosis at 25 and the trials and tribulations of treatment all while finishing school and working towards becoming an oncology nurse. Her strong voice 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!

Friday the 13th. For most people, this is little more than a cheesy 80’s horror movie about a crazy dude in a hockey mask killing off campers at Crystal Lake. Or, a reminder to stay away from black cats and broken mirrors. For me, however, Friday the 13th took on a whole new meaning.

I’d always considered myself fairly unlucky. Bad things just seemed to follow me like a black cloud no matter how many good deeds I did to ward them off. As a result, I grew overly paranoid and superstitious, and proceeded to live a very cautious life. The long running joke in the laboratory where I worked was what medical ailment I’d be dying from each day during my shift. One day, my pancreas would be failing; the next, I would need my foot amputated because of a drug resistant, mutant rash. One day, the jokes stopped.

In December of 2011, at the age of 25, I found a lump in my right breast. It was no more than the size of a marble. Of course, the first thing I did was panic, and immediately jumped to the conclusion that it was the Big C.

“At your age, it’s so unlikely,” I was told, “keep an eye on it for a month and see if it goes away. It’s probably just a cyst.”

I waited and I watched and the New Year arrived. By January of 2012, the lump was still there. Not only was it still there, it had nearly doubled in size. It had grown so large, it could be seen through my skin. I forced my boyfriend to feel it, to tell me it had always been there, and that I was just being crazy, as usual. The look on his face and his silence as he felt the lump negated everything that I was secretly hoping to hear.

In February, I called one doctor’s office after another, doing my best to get a referral to be seen in the Breast Center at the hospital. I was shut down each time by each receptionist, no matter how much I pleaded my case. Who knew it would be so difficult to find a slot to be seen for a good fifteen minutes? I would just lay all my chips out on the table:

“But, I’m an employee here. I’m 25. I have a lump in my breast!” Only to hear in return, “We don’t have anything available until April or May” or “we aren’t taking new patients right now” or “voicemail.”

After hearing this for the seventh or eighth time, I broke down into tears and nearly gave up trying to be seen. At this point, the skin around my right nipple had puckered and inverted. It looked almost as though it had sunken into itself. I called one more office that was totally unaffiliated with my hospital and got an appointment with a doctor within two weeks. My 26th birthday came in March, and so did my meeting with the doctor.

“It’s probably just a cyst,” she said, “but I want you to get it checked, just to be sure. I’m going to write you a [prescription] for an ultrasound and a mammogram.”

I breathed a sigh of relief. The doctor thinks it’s just a cyst, so it can’t be cancer, I’m too much of a health freak for it to be cancer, I’m fine, I thought.

In April, I sat in the waiting room of the Women’s Imaging Center, surrounded by women who were all at least double my age. They came and went from within the examination room within five minutes. I must have been sitting out there for over an hour in that ugly pink gown that could easily swallow three of me. Finally, they called me back to that cold little room. It didn’t look good. They needed me to come back the next day for a biopsy.

I’m too young for this. I have no family history. I don’t drink or smoke or even consume caffeine. I’m a vegan. I exercise daily. I never get sick! I thought, sobbing angrily.

Because I work in the histopathology lab, my biopsy got VIP rush treatment. I saw my specimen come off the tissue processor. I saw my supervisor cut it. I also saw when she had to go back and cut it again, to run ER/PR testing on it. That’s when I realized that I had cancer. And this time, it was real. I sobbed as I scraped paraffin off of the floor, doing my best to finish my shift before meeting with the breast surgeon, who confirmed what I already knew.

Friday the 13th.

It was the luckiest day of my life, because I am still here to talk about it.

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