Cancer: A Risk, A Surprise, And Certainly An Adventure

Ronda Walker Weaver, LBBC‘s newest blog contributor and soon to be regular contributor, shares her story about her diagnosis and how it made her step outside of her comfort zone and learn to accept the new changes in her life.

I am 54; I teach writing at our local university and I work for an education company in my spare time. I am the proud grandmother of 16 grandchildren! I found a lump in my breast on Thursday Aug. 30, 2012, and by the following Wednesday I had a diagnosis of cancer and surgery the following Wednesday – Stage 1 Grade 3 Invasive Ductile Carcinoma, Triple Negative. Twelve days from finding to removing (nothing in the nodes or surrounding tissue). I was told I’d need 8 biweekly chemotherapy treatments and then 35 radiation treatments. No one in my family has had cancer; cancer has never ever been in my vocabulary.  I knew I could not go on this journey alone, and so I invited friends and family to join me. I figured the prayers and positive thoughts would be enough to bear me up. I learned my life was out of my control, and I had to live moment by moment, not only trusting others, but actually needing others to care for me. No plans – just prayers.

I’m not one to run away – I am not one to live in fear – I will walk away from anger, hurt, betrayal, poison, but I prefer negotiating, talking things through, working things out, coming to some sort of compromise. I believe in education, intuition, and inspiration.

Yet I’m not really a risk-taker, unless a risk is defined as driving down a road without a map, or pushing myself at the gym. I won’t put my physical self in any place that might be risky – I don’t like heights, I’m not a great swimmer, I’m probably not going to sky dive anytime soon. I like intellectual risks though – what a rush it is to learn, to discover, and to know I can learn – bring it on!

I prefer “looking forward to,” over “surprise.” I love adventure, but I want to know a little about what I am embarking on. Over our back door we have the phrase, “Go out for adventure, come home for love.”  I like planning, that’s part of the adventure, part of the journey – it’s like receiving a gift card for Christmas, and then using it, 2 gifts for the price of 1!

And here stands cancer.  A risk, a surprise, and certainly an adventure. However – fear, get thee away. I will learn what I can, listen to my own body, and pray for inspiration – it is already arriving.

What I’m learning:

1. Acknowledge it – Breast Cancer

2. Don’t blame – it’s not heredity, not second hand smoke, not diet. It just is. Why me? Why not me.

3. Listen to myself – I was told “something” was coming my way, here it is.

4. Time – a dear friend of mine taught me, “Give it time, the answer will manifest itself.” Reminds me of the tune, “You Can’t Hurry Love.” Time is of the essence, but all I have is time.

5. Get out of my comfort zone – My comfort zone is this, do, do, do, busy, help, seek, find, do, do, do. Now I will learn to be still – again.

Rhonda is 54 years old, she eats right, exercises daily, and there is no history of cancer in her family, yet she was diagnosed with breast cancer on Thursday, Sept. 6, 2012. She teaches folklore and writing at Utah Valley University and works for an online education company, LearningU. She loves reading, listening to music, gardening, walking and riding her bike, traveling, and spending time with her grandchildren, children, and her dear husband – who has been her pillar of strength through her journey. She also writes her own blog called Folklady’s Adventures.

Reset

LBBC would like to introduce Lucille Kasprack, a woman living with metastatic breast cancer who hasn’t allowed it to get in the way of fulfilling one of her most important dreams of being a professional artist! Here she shares her inspirational story about how she turned her diagnosis into a positive experience that ultimately changed her life in more ways than one…

Wow! If someone had told me 10 years ago that in May 2013 I would be exhibiting my artwork in a gallery in New York City I would have thought they were dreaming or a little bit crazy. But that is exactly what has happened to me after a long struggle with breast cancer. My journey started in 2003 with a diagnosis of Stage 1 breast cancer and we all know how frightening it is to receive that news. I decided I was going to tackle this head on; with my husband being my support, my art becoming my refuge, and God becoming my strength. Once surgery and radiation was over, little by little I felt like my old self again except for one difference. My approach to life was changed completely; nothing would be taken for granted ever again. Now my husband and family and my art became much more important to me. I set new goals for myself: appreciate and see my family more; and work hard at my art to become a better painter. And for the next 5 years that is what I did. We had more family get togethers and I took a lot of art classes and workshops and worked daily on my paintings.

In 2008, at my 5 year breast cancer check-up, an MRI and CT scan showed a spot under my left arm and 2 in my chest. A biopsy confirmed Stage 4 metastatic cancer. I now had to face the fact I will never be free of this cancer and I will have to reset new goals for myself. Those goals were to have more fun times with friends and family, and to not just work at painting but to work to become a professional artist, and to place my life in God’s hands. I started entering my paintings in juried art shows and exhibits and to my surprise they were not only accepted but also won prizes.

In 2011, I had to have thoracic surgery because the cancer had spread to my pleura. However, after chemo treatments and subsequent hospitalizations, my last PET scans have remained stable.

Then came 2012 and that “Wow” happened.  In the Spring I was contacted by the Agora Gallery in NYC stating that they saw my work on my website and were very impressed and requested that I submit a portfolio of my work for their review. At first, I didn’t believe it and then in time I realized what a great opportunity this was and I sent in my portfolio. A few weeks later I was informed that they would like to include my work in a future exhibit. I definitely said yes!  It turned out to be a lot of work but the end result is that my work will be on display in NYC from May 11 -31 with an artist’s reception on May 16, 2013. What an amazing journey! Never give up! I reached my goal and I am now a professional artist. I also received additional blessings. My fourth grandchild, Ashley, was born on November 13, 2012 and I continue to have stable PET scans!

Lucille is a 10 year breast cancer survivor and lives in New Jersey with her husband. She has 2 children and 4 grandchildren. Her husband is a retired school administrator and she is a retired  teacher but she continues to work daily on painting and drawing. She loves to experiment with different materials to keep it new and interesting. You can view her artwork on her website at http://lucillesartgallery.sharepoint.com!

Give LBBC Your Feedback About Peggy Orenstein’s New York Times Article, “Our Feel-Good War on Cancer”

By Jean A. Sachs, MSS, MLSP, Living Beyond Breast Cancer’s chief executive officer 

Journalist Peggy Orenstein ignited a debate when she explored the limits of mammography screening and the dangers of overtreatment for breast cancer in her New York Times Magazine article, “Our Feel-Good War on Cancer” (April 25, 2013).

For many in the breast cancer community, Ms. Orenstein’s observations come as no surprise. We know survival rates for women with metastatic disease have not changed, despite the widespread adoption of breast cancer screening. That women with ductal carcinoma in situ, or DCIS, often receive the same treatments as those with invasive disease—along with the related side effects and emotional distress. That more and more women choose prophylactic mastectomy after a diagnosis of DCIS or early-stage disease. And that our sisters with stage IV breast cancer remain silenced, isolated and underserved.

Still, the article introduced thousands of people to the realities of breast cancer today. As we talked about it at the LBBC office, we had many questions. How did this piece impact you and your loved ones? We want to know:

• What is your perspective?
• What questions does this article prompt for you?
• What are your concerns for your health or well-being, based on what you learned?
• Which issues deserve more discussion?

Based on your feedback, Living Beyond Breast Cancer will design a program to help further discussion. Please post your comments below, and our staff will review them.

Fighting Depression and Anxiety with Your Fork: 5 Top Food Tips for Boosting Your Mood

As part one of a two part series, previous blog contributors Kendall and Annette, two young cancer survivors and authors of Kicking Cancer in the Kitchen, share their tips on how food can positively impact mood in preparation for LBBC’s upcoming webinar on anxiety and depression after breast cancer.

Let’s face it: Life is fast-paced and challenging enough as it is. Add a cancer diagnosis and the likely possibility of surgery, chemotherapy and radiation to the mix and it goes without saying that our world, and our emotions, get turned upside down and inside out. If we weren’t already facing them before, anxiety and/or depression can find their way into our lives and wreak havoc with our minds and bodies. This is an important time to make self-care a priority. Though we may not feel motivated to do so, taking steps to care for ourselves, even when we are down-in-the-dumps, can help pull us back up onto our feet a lot faster. Some self-care practices that I love are receiving therapeutic touch, sitting in silence and getting outside to move and feel the sun shine on my face. These all help lift my spirit and bring some peace. But beyond that, I’ve discovered the power of real food to help me feel better and stronger, physically, psychologically and emotionally.

Today I’d like to share my top tips around using food to help boost your mood. Try out these suggestions and see if they help the stress and anxiety lessen and the dark clouds lift just a little.

1. Eat a Whole Food, Plant-Based Diet: It’s clear – what we put onto our plates and into our bodies matters. When we consume a nutrient-poor diet, we aren’t giving our body what it needs to be strong and healthy on all levels, including mentally and emotionally. Transitioning from a diet which is focused on packaged, processed foods and moving toward a diet rich in whole foods provides the nutrients and minerals our body, and minds, are craving. A good rule of thumb is to stick with foods your great-grandmother would recognize.

2. Add Healthy Fats to Your Diet: Having enough of the right kinds of fats in your diet is important for optimal health.  Of special importance for mental and emotional health are omega-3 fatty acids. These have been found in some studies to be as helpful as medication for depression. Vegetarian sources of omega-3s are flax and flax oil, walnuts, and chia and hemp seeds. For those comfortable with a vegetarian and seafood diet (pescetarian diet), cod liver oil is also an excellent source.

3. Satisfy your Sweet Tooth in a Smart Way: Sugar, the culprit of many health woes, lures us in with its sweetness and causes ups and downs in energy and emotion. Step off of sugar’s roller coaster ride and satisfy your sweet tooth in a more balanced way. Enjoying whole fruit, like berries, which are high in antioxidants, give us the pleasure of sweetness which won’t interfere with our blood sugar level while at the same time giving us a healthy boost! Win-win situation! Dark chocolate (the higher the cocoa content, the better) is also another healthy way to enjoy a sweet, rich treat.

4. Vitalize with Vitamins: All vitamins and minerals are important for our health, but certain ones stand out in importance for mental and emotional health. Vitamin D, which is produced by our body when our skin is exposed to sunlight, often needs to be supplemented in our diets in order to obtain adequate levels. Consider adding in some Vitamin D along with some careful exposure to sunlight. Vitamin B-12 also plays a role in our ability to manage stress and anxiety. For vegetarians and vegans, supplementation is important. For pescetarians sardines, salmon, halibut and cod are all choices high in B-12.

5. Pleasurable Protein: Including protein at each meal and snack can go a long way to helping us deal with depression and anxiety. And shifting our focus to healthy, plant-based protein foods will benefit us on so many levels. Try including some leafy greens (yes, they contain protein!) like parsley, broccoli, romaine and kale in a meal or two a day. Snack on almonds and walnuts. And enjoy the wide variety of beans – like black, pinto, navy and adzuki, just to name a few – in soups or dishes.

As challenging as it may be to ditch the familiar – and often unhealthy – comfort foods we are used to when not feeling well, the effort we make to clean up our diets and our plates can pay off in helping us face the stress and anxiety which our lives, and cancer, may bring us, and can also help brighten our moods as well. And the best part: eating well tastes delicious, and the sights and scents and company of a good meal can help lift our spirits, too.

Part two of this series will discuss the idea of ‘comfort foods’ and why we turned to them when we’re feeling down. Since comfort foods are stereotypically rich and decadent, Kendell and Annette will take your most popular comfort foods and make them healthier with new lighter recipes! To submit your favorite comfort food to be lightened up in a new recipe, please leave a comment here or visit our facebook page! Maybe your favorite indulgence will make the cut and you’ll have a great new recipe to try! Happy voting!

Don’t forget, on May 15th LBBC will be hosting a free webinar titled Anxiety and Depression After Breast Cancer from noon to 1pm featuring guest speaker Dr. Ruth Steinman. Click here for more information or to register.

If you’re interested in learning more about Kicking Cancer in the Kitchen or or purchasing their healthy cookbook please visit http://thekickingkitchen.com/.

How I Learned to Stop Worrying and Love Tamoxifen Part 2

Last week regular blog contributor Randi Rentz shared the first part of her journey with Tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. Here she continues her story…

Where were we?

Oh, yeah.

If I was a betting woman (I’m not anymore) I’d venture that based on ATLAS (the study published in The Lancet) sales of antidepressants to breast cancer survivors are poised to go through the roof. According to studies, taking tamoxifen can lower the risk of a breast cancer recurrence by up to 50%.  So, many women are more than willing to tolerate its side effects to remain free of their cancer.

But…

Many of these women are also taking antidepressants to help restrain the hot flashes, vaginal dryness, low libido and osteoporosis that the estrogen suppressor can cause.

Don’t get me wrong. This drug does help many and the new study has found that taking tamoxifen longer than five years can further reduce deaths from the disease.  The researchers studied a group of nearly 7,000 women with ER-positive breast cancer. The women were randomly assigned to stick to just five years of tamoxifen or to take it for an additional five years. The study found a significant benefit from remaining on tamoxifen for 10 years:  Women were less likely to have a recurrence of breast cancer, and they were less likely to die of breast cancer than women who took the drug for only five years.

Be aware, however, that after menopause, tamoxifen may increase the risk of uterine cancer.  It also may increase the risk of blood clots in the legs and lungs in all women. My legs are already throbbing thinking about it. So it’s like most treatments:  There are both benefits and risks, and you have to work with your doctor to balance them.

So, what’s my decision? We’ll, I’m 4 ½ years in and have already had a conversation with my oncologist, which is forever changing. At the moment, I’m going to go for 7 years. I’m cautious about laying in a lifetime supply of tamoxifen. I’m open to using different drugs over time, or listening to a new study that could come out reporting different results.  What I really want and need is effective prevention. Until that comes, I’ll work with the drugs that I have for now.

Be sure to check out Randi’s website and read the excerpt from her upcoming novel ‘Why Buy a Wig…When You Can Buy Diamonds!’.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

For more of LBBC’s coverage of the ATLAS clinical trial, please visit our Spring 2013 issue of Insight our quarterly newsletter and additional news coverage.

How I Learned to Stop Worrying and Love Tamoxifen

Most of you already know Randi from her many contributions to the LBBC blog.  Today, Randi gives her take on tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. In her latest post, the first of a two-part series, Randi shares with LBBC readers her experience and thoughts on these latest findings.

I’m still not a full-fledged Tamoxi-Babe.

There.  I admit it.

But after reading lots of information released since The Lancet published a study showing the probability that tamoxifen treatment for 10 years instead of 5 decreases both the rates of mortality and chance of recurrence in women with breast cancer, I may find myself stuck as a passenger on Train Tamoxifen for a few more years.

Pass the happy pills (we’ll get to that in a minute).

I say “stuck” because I was hoping that train was coming to the station.  I was first given tamoxifen after I completed my treatment plan for breast cancer, which was ER-positive (lumpectomy, chemotherapy and radiation).  I honestly can’t recall the physical side-effects because this little thing called chemo-brain got the best of me (we’ll talk about that some other….what was I saying?) Anyway, after the first few months of tamoxifen treatment, the unexpected happened.

“Seriously?  Did you just say I have a mass growing on my left ovary, which is going to result in the need for me to have complicated surgery? Because believe me, that wasn’t in my cancer plan.”

Seriously.

My body betrays me again.  And then, a little voice in my head started asking if the tamoxifen could have been the reason for my gynecological “problem.” And before you say, “But Randi, studies indicate there’s maybe only a small chance of that happening,” I get it.  I really do, so thank you.  But, “small” ain’t “zero” and I already proved my ability to beat the odds by being diagnosed with breast cancer in my 40s so I know all about odds and how somebody needs to be in the “small” group in order for there to even be a “small” group and deal with the fact that it’s sometimes better to be a zero.

I digress.

As I recuperated from the big hysterectomy bag of a nightmare, my oncologist put me on an aromatase inhibitor, the results of which for me were some messed up side effects. Joint pain 24/7 bad enough to feel like I was going through chemo all over again. I couldn’t get out of bed without being in pain. I feared my days were numbered when I had difficulty just lifting my legs over my bed or unfolding my fingers one-by-one. I felt arthritic and old. Did I mention I was also cranky and belligerent? Like that crusty ancient neighbor we all had in the old neighborhood whose house we ran past because word on the street was she’d try to fatten you up with the gingerbread cookies she used as shingles on the roof of her house.  On the outside, I didn’t look a day over 40, but I felt like a 90 year-old on the inside.

After months of complaints and many aromatase inhibitors later, I came full circle back to tamoxifen. Ironic.  Even worse, it was Alanis Morissette irony better known as the “isn’t it ironic that the things I sing about in this song called “Ironic” aren’t actually ironic but really are just bad luck” kind of ironic. And that little voice was in my head again and it was asking if I was putting back inside of me the very thing that had got me to where I was in the second place. I wondered again if it caused me to lose my female reproductive parts. I even begged my oncologist to use me for a study regarding gynecological masses after taking tamoxifen.

“Not enough data.”

Again. Seriously?

I am the data!

And now The Lancet study, those aforementioned happy pills and a ticket to ride Train Tamoxifen.

I can tell you right now that I’m willing to bet my…

Wait. I was going to say eye teeth but on second thought I’m not voluntarily going to give up another piece of me. Let’s start again.

Randi’s story concludes next week with part two of The Seven Year Itch or How I Learned to Stop Worrying and Love Tamoxifen.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

Blessings In Disguise

LBBC would like to introduce multi-award-winning author Helen Brown as our newest blog contributor! Helen has written two novels since her breast cancer diagnosis and her latest, ‘Cats & Daughters’, will be reviewed by a regular LBBC blog contributor in the coming weeks so stop by soon for what we’re sure will be an excellent review!

The best part of my life began with breast cancer.

I wouldn’t have believed that nearly five years ago when I had the mastectomy. But looking back I can honestly say the years since that traumatic event have brought more happiness and success than any other period of my adult life.

I was part way through writing my memoir Cleo when a routine mammogram revealed a large growth.

When the doctor diagnosed ductal cancer I told her I was too busy to be sick. I was writing a book about our black cat Cleo and how she’d helped our family recover from the loss of our nine year-old son in 1983.

Cleo had died a couple of years earlier at the age of 23 and a half. I wanted to honor her and give hope to other parents who’d lost children. Even though I couldn’t find a publisher and agents scattered on approach, this book needed writing.

While I was recovering after surgery, I crept back to the computer and completed the manuscript. Then to my delight, an Australian publisher sent a contract.

When an editor sent 15 pages of suggested changes, my heart sank. Still, cancer wasn’t far from my mind. If this was to be my last book it had to be my best.

I was astonished when Cleo was published in the US and became a New York Times best seller. It’s now published in more than 16 languages and a movie’s in development. I still sometimes have to pinch myself.

With Cleo’s success I received countless emails asking for a sequel. As it turned out there was plenty more to write about for my new book, Cats and Daughters.

Not long after the mastectomy, a rambunctious Siamese burst in on our lives. Galloping through the house, smashing vases, shredding the stair carpet, he drove me nuts. Jonah also made me laugh till my stitches hurt.

Our new cat’s rebellious spirit was mirrored in our elder daughter, Lydia. At the age of 23, after a brilliant academic career, she rejected Western society – and, I thought, her mother. To my horror, she shaved her head and flew to war-torn Sri Lanka to become a Buddhist nun.

It took a while to realize Lydia hadn’t abandoned me. She was simply redefining our relationship, insisting I pull back and allow her freedom. These days we’re very close.

Likewise, it wasn’t till I learned to relax about some of Jonah’s outrageous behavior that life with him became easier.

At an age I thought I’d be tending roses I’m traveling the world meeting publishers, readers and media. Emails roll in from Russia, Italy, Brazil.

If it hadn’t been for breast cancer and the determination it brought to make the most of life I doubt any of this would’ve happened.

Breast cancer made me take risks. I stopped putting things off and stretched my abilities to the limit.

With a good prognosis now, I savor beauty in every moment, open my heart to strangers and never leave a loving thought unsaid.

For these reasons I’m deeply grateful.

***

Helen Brown was born and brought up in New Zealand, where she first worked as a journalist, TV presenter, and scriptwriter. A multi-award-winning columnist, Helen now lives in Melbourne, Australia, with her family and feline. Cleo, her first novel, rose to the top of the bestseller lists in its first weeks in the United States, United Kingdom, New Zealand, France, and Australia, and has been translated into more than sixteen languages. It is currently being made into a major motion picture by South Pacific Pictures (the makers of Whale Rider). Her new memoir, CATS & DAUGHTERS, came out on March 26, 2013. 

Visit Helen Brown online at www.helenbrown.com.

What, Me…Cancer??

On Tuesday we introduced first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu. Here is part two of her story.

On that day of the LBBC Yoga on the Steps Fundraiser in DC,  my sneaky triple negative breast cancer in fact was not gone, only as yet undetected.  And that 95% chance of non-recurrence? Well, somebody has to be in that 5%.  So much for my faith in statistics.   In early November 2012, a trip to the dentist and a routine x-ray showed something odd. “You don’t have a history of breast cancer, do you? I had a patient with breast cancer that metastasized to her jaw . .  .”  Well, my jaw dropped open, and then clenched through a roller coaster week of scans of my head, bones and brain (all normal), and a full body pet scan that showed metastases of my breast cancer to four sites—all soft tissue/lymph nodes.  In the world of Stage IV disease, I am very very early . .   . my cancer is virtually in its infancy. And I have every intention of keeping it there.  I am stunting your growth, you little b . .  .d!!

Wrong assumption # 5: stage IV is a death sentence.  I did not know that stage IV could be livable.  I truly thought that—except in rare instances—stage IV patients were down for the count.  I now understand that with current treatment I am likely to live for 20ish years (at which point I’ll be 75, which sounds way far away to me), and with treatment advances that are likely to emerge in the next decade, I’ll likely live longer than that–maybe even to my original target age of 90. (For some reason at age 45, I decided that 90 was a good ending point.)

I have just completed five rounds of chemotherapy, and am nearing the end of treatment.  The chemo was actually less fatiguing and I experienced fewer side effects this time.   I kept my hair, which shallow but true, makes me feel good about myself.  And I really, really don’t look sick at all, unless one notices my port.  I do suddenly have lymphedema in my right arm, a side effect of having fewer/less functional lymph nodes—even though those lymph nodes were removed surgically almost three years ago.  It’s always something.  But most importantly, the chemo is working! After three rounds, a scan showed that all four cancer sites had decreased in size by about 50%.  These numbers I can handle.  Hallelujah!  Thank you higher powers, and thank you drug developers, doctors, nurses, and everyone else that played a role in this.  Cancer, you’re going down.

Granted, I don’t always feel or act so tough.  Having a lifelong chronic disease is a life change that I haven’t quite wrapped my arms around yet. How exactly does one move on with life, and yet live from scan to scan? I feel like my cancer is a stalker that we may have driven away for awhile, but that is lingering nearby and can move back in at anytime.  My lifelong goal will be to keep him away from the good body parts.

In the meantime, I will continue to do the work I feel passionate about; work out, practice yoga, learn to meditate; be a loving mother, wife, sister, aunt, and friend; get pedicures, and buy rockin’ shoes.  Albeit, I will do all of these things as a cancer patient.  It’s not what I wanted or planned on, but it’s what I’ve got. And we don’t always get to choose.

You can continue to follow Sandi’s story by visiting her own blog, Cancer Diva 4 Ever and be sure to visit the LBBC blog for future posts by Sandi!

As we mentioned on Tuesday, LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

What, Me . . . .Cancer??

Today, we welcome first time contributor Sandi Dennis to the Living Beyond Breast Cancer Blog.  Sandi is a long time supporter of LBBC who grew up in Philly and attended Philadelphia High School for Girls (where she is looking forward to her 40th reunion in 2014!). She majored in journalism at Penn State and worked as a TV news reporter in Columbia, South Carolina, prior to attending University of South Carolina Law School. Today she practices FDA/healthcare law, and policy, including work for companies and nonprofits in oncology and patient advocacy.  She lives in Washington, DC, with her husband, daughter and a dog named Lulu.  

 

I know far more about breast cancer than I ever thought I would.  In almost three years, I have gone from knowing a bit more than the average bear (as a healthcare lawyer I have worked with biopharmaceutical companies on treatment advances), to knowing a respectable amount.  And since breast cancer has now become part of my forever, I think I’m heading towards PhD status. Much of what I have learned has altered some of my basic assumptions: of who will be a breast cancer patient (not me, of course), what treatment is involved, what chemotherapy is like, and who will have a recurrence/metastatic disease (again, of course, not me!).

I was wrong on all counts.

First, I couldn’t count on lack of family history, my generally healthy lifestyle and overall excellent health, or regular mammograms and exams.  Cancer thumbed its nose at all of that. In April 2010–while trying to print out my boarding pass for a trip to Mexico and a week of intensive yoga, hiking, and vegetarian meals—I felt a lump just above my right breast.  I was not doing a self-breast exam; I think I was scratching under my arm.  If my Internet connection had been faster, I likely would not have found it.

Second, once I swallowed the “you have breast cancer” news (and bought a fabulous pair of retro-vintage high heeled mary janes in ecru lace with black leather trim), I thought I was just meeting with my surgeon to schedule a surgery date.

(said mary janes)

I went alone, planned to drive to my office afterwards, hopefully in time for a late-morning meeting.  What was the big deal? Just a lumpectomy, I thought, maybe an estrogen-lowering drug . . .  but no, a diagnosis I’d never heard of: “triple negative . .   chemotherapy . .  you will lose your beautiful hair . . . “  I could not swallow those words.  The shoes did not help.  I called my two best friends who came to get me and my car, and stayed with me until my husband could get home.  He proceeded to refinance our mortgage at a lower rate.  I have no recollection of what I did for the rest of that day.

Third, I assumed chemo patients were pale, thin, and sickly, and expected to have my head in the toilet for days. Here, the reality was better than my assumptions. While chemo is no day at the beach, it can be livable and tolerable.  I worked, continued my workouts and yoga, and never felt nauseous, thanks to the advances in treatment of chemo side effects.  I got pedicures, which I once would’ve thought were verboten for chemo patients. I actually gained a bit of weight from steroids, and I never really looked sick, unless someone caught a glimpse of me without one of my wigs on (which did occur in yoga—95 degrees and sweat are not good for wigs!)

Fourth, once I got through surgery, chemo, and radiation, my “beautiful” hair grew back, and I became less fatigued (although fatigue never completely went away), I thought I was home free.  My chance of recurrence was decreasing every year, and at this point was only about 5%.  On October 14, 2012–exactly 2 1/2 years out AND my 56 1/2 year birthday– I proudly participated in LBBC’s Yoga on the Steps fundraiser in DC,  and was the top individual fundraiser.  (Yay me, and yay, my generous, thoughtful friends and family!) I was called up to the stage and given the microphone & announced that I was cancer-free, exactly halfway through my five year milestone. Yay me, yay science and medicine, yay life!

Wrong again, Mary Lou.

You’ll find the second half of Sandi’s first LBBC blog story on Thursday.  In the meantime, you can learn more about Sandi by visiting her own blog, Cancer Diva 4 Ever.

LBBC will host its Annual Conference for Women Living with Metastatic Breast Cancer  Saturday, April 13 and Sunday, April 14 at the Loews Philadelphia Hotel.  The conference is designed to address the complex medical, social and emotional challenges that women diagnosed with metastatic disease, their families and their caregivers experience. To learn more about the conference visit lbbc.org.  In addition, on April 17, LBBC and the Triple Negative Breast Cancer Foundation will conduct a free webinar at 12:00 p.m. EST.  Also accessible by phone, the webinar’s featured guest is Dr. George W. Sledge Jr. Chief, Division of Oncology, Professor of Medicine, Stanford University School of Medicine.  During the call, you’ll hear about today’s standard of care in treating breast cancer that tests negative for the estrogen, progesterone and HER2 neu receptors and gain insight on making the treatment decisions that are right for you.  In addition, how to access clinical trials and get an insider’s look at the latest research on the horizon will also be discussed. Register online or call (610) 645-4567.

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!”

***

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…