I Talk To Strangers…You Should Too!

randi rentz

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…

VonStJamesFamily

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!

TN Focus Group Header

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!

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

Kathleen Hammett: Before I was diagnosed with breast cancer, I knew I was a survivor.

Welcome back to the C4YW Blog, as we welcome Kathleen Hammett to our growing group of writers. Kathleen has a very compelling story, and she will continue to share with us the ups and downs of parenting after diagnosis. 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!

On October 1st, 2007, we joyously welcomed our third daughter, Clara Elizabeth, into our family. The C-section went smoothly and we were looking forward to a speedy recovery. Things did not go as planned. Sixty hours after her birth, barely alive, I was rushed into surgery to evacuate a massive retroperitoneal hemorrhage, so large it had displaced my kidneys and bladder and had even caused my lungs to collapse.

Barely alive after multiple blood transfusions. At least I'm off the ventilator!

Barely alive after multiple blood transfusions. At least I’m off the ventilator!

This was the end of a long journey for my husband and me. Our first daughter was born blind (our Amazing Grace who can now see), our second daughter was born asleep; we were blessed with Ella in our third pregnancy, but lost another daughter on our fourth try. We were physically and mentally exhausted. I woke up in the ICU on a ventilator, 57 staples running from my chest all the way down, minus a uterus, and a long way from recovery. My baby, along with my dreams of a large family went home two weeks before I did. It took an amazing nurse, many generous blood donors, extremely supportive friends and family, and a lot of inner strength to begin healing.

When Clara was 7 months old I decided it was time to get a physical, with a family history of breast cancer this always included a mammogram even though I was only 36.

Obviously I would not be posting on this blog if the results had come back clean and clear. After 7 months of constant medical appointments dealing with the aftermath of a horrific birth experience I was facing the prospect of death again and my tank was completely on empty.

In life, it is so amazing how quickly our perspective can change.

As I went through the normal battery of diagnostic testing we were thrilled at how BLESSED I was to have DCIS. Since both of my breasts were scattered with DCIS coming to terms with a double mastectomy proved to be very difficult for me. My breasts were how I had fed and comforted my babies. Clara was only 7 months old and I had just lost my uterus, could I really stand to lose all my female parts in under a year? Would I ever feel like a woman again? Would a love of shoes be all that separated me from the boys?

Again, after almost dying in child birth and then getting a double mastectomy less than a year later I found myself proclaiming how BLESSED I was: negative nodes! Perspective is an amazing thing.

As I began to heal from yet another major surgery, I started walking daily. Clara took her morning and afternoon naps in the stroller as I pushed my way back to health. After several months I began jogging between mailboxes….this was a MIRACLE! Having developed large breasts in the 6th grade I had literally never been able to run, I could teach step aerobics and spinning all day long, but the repetitive motion of running was too hard on my breasts and back.

As my body regained its muscular strength, I was regaining my inner strength. I am a longtime group fitness instructor and have had the opportunity to help so many women as they heal from breast cancer treatments. I am able to listen and relate to their struggles as I teach them to return to exercise slowly and safely. Each time I get another survivor physically ready to return to live their normal lives, I feel like I have beaten cancer one more time. Our minds heal so much more quickly when we are moving.

Our bodies can overcome so much and with enough work, passion and dedication it is possible to come back and be as strong as or even stronger than before. We are often surrounded by people with excuses or an “I can’t” attitude, coming back from breast cancer, or any cancer shows us that obstacles are meant to be hurdled, cleared or completely obliterated!

Me today, happy healthy and strong!

Me today, happy healthy and strong!

Having never run before cancer, I have now completed five marathons (even qualifying for the Boston Marathon by ten minutes), many 50Ks, and other (even longer) distance races.

Life is good and I am happy to say how incredibly BLESSED I have been!

Perspective.

Kathleen is a wife and full time mom to three amazing, energetic and dramatic daughters.  She loves her part time job teaching group fitness and manages to find time to train for and compete in many running events, ultra-marathons through wooded trails being her favorite.  Kathleen has been cancer free for four years and credits a loving family, a lot of yoga and many trail miles for her happy outlook moving towards the future. Come back to the C4YW blog for future posts by Kathleen,  and you can also follow her story on her own Blog.

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.