Healing with Photos

This entry was written by Lynne Goldstein, a photographer & breast cancer survivor:

When I tell people that I have had five different cancers (not including a brain tumor which was benign, yet surprisingly inconvenient), I think I perform a service for them. Maybe for a second they feel better about themselves after hearing my history.

As for me, I’m still struggling. I guess I always will. Sometimes when it occurs to me that I actually have had cancer multiple times, I stop and think, “That can’t be. I must be mistaken.”  Even after six years of being cancer-free, the shock still hits me – and this is after years of psychotherapy … Twice a week. Every week. For six years. (Not including national holidays.)

My lovely therapist has told me that I am, indeed, moving on. So I believe him. After all, he is the one with the degree hanging in his office.

“Channel your creativity,” he tells me. So I have decided to fall back on my photography, my passion. For years I have been taking pictures of animals, flowers, architecture, fluffy clouds, even family members (though they keep confiscating my camera). I never thought about putting photography and cancer together. It seemed too much of a cliché.

But I was wrong. Though telling the story about my illnesses through the camera lens has been painful, exposing, maddening, emotional, and, finally, ‘almost, yet not-quite-accepting,’ it has also provided a way for me to create a visual for my feelings. The result, and for want of a better title, is my ‘cancer series.’ It begins with chaos, transforms to anger, and finally goes from a blackness to a more hopeful palette. However, it remains, and will remain, unended.

When you look at a few of the photos in the series that I have included below, you may see different things. The shapes may be recognizable and yet a little off-center, not true to nature. You can focus on what seems to be the subject in the photo. Or you can search for what might be represented in the negative spaces in order to gain a different perspective. No matter what you see, I hope that they evoke some personal response. Or even just an aesthetic one. Regardless of your experience, I am just happy to share them with you.

Whatever your state of mind, whatever your history, whatever your situation…

It’s all how you look at it.

© All rights reserved. Lynne Goldstein 2010.

© All rights reserved. Lynne Goldstein 2010.

© All rights reserved. Lynne Goldstein 2010.

 

To see more of Lynne’s work, please visit her official website. If you’re interested in purchasing a copy of the photos, please email Lynne or leave a comment below.

What do you think of Lynne’s work? What emotions are conveyed through the images? How do you express your struggle with breast cancer (or any disease for that matter)?

If I had to do it over again…

This entry was written by one of our volunteers:

If I could do it all over again, (not that I would!) here are some things I wish I had known before going through breast cancer treatment. I hope these are helpful.

• Side effects won’t last.

There were times when I was hit hard by the unpleasant side effects, and it seemed as if I would feel that way forever.  But I didn’t.  To the extent that I was able, I distracted myself by trying to focus on something outside:  TV, reading, visiting.

 • Accept help from people who want to help.

In some ways I tend to be an independent person.  My mother told me the first words I spoke were “Do it myself!”  So during treatment I tended to tell people I was doing OK when they offered to help.  But then I learned that, when I did let others do something for me, it made them feel great and it did help me, too!

• Give yourself time – if you need to rest, rest.

The surgery, chemotherapy, radiation, going to see doctors, getting tests – all of that took a lot out of me!  I tried to keep up with everything I had planned, but guess what?  It was too much.  I needed to plan for time to rest.

• Be nice to the people who are taking care of you.

What a great group of people they have giving treatment.  I imagine that some people who endure weeks of radiation and months of chemotherapy can get very grumpy with the nurses, technicians and other staff who administer the treatment.  Early on I realized that these incredible people were helping to save my life.   I was so grateful to them and let them know it often.  Looking back on it, I realize they probably would have been just as nice to me even if I had been grumpy.  Common sense tells me that their time with me was a lot more pleasant because I made the effort to be pleasant to them and to show my appreciation of how well they were taking care of me.

• You have to be your own “case manager.”

It turns out that the process of getting treatment for breast cancer can get very complicated.  There’s so much going on and someone has to keep track of all of it.  I learned that lesson about halfway through chemotherapy.  A clerical person called me to change an appointment because my oncologist had to go out of town that day.  During the phone conversation I realized that I could probably go get treatment even if he was not there.  So I asked.  And yes, I kept the appointment.  Someone else saw me that day and I did not have to postpone or interrupt my treatment schedule.

• Treatment is easier when you know what to expect.

Going at the beginning of radiation and chemotherapy was strange and different.  After a few times it got more familiar.  I now recommend that people facing treatment ask others who have had it what their experience was like.  Remember the old saying:  “Be Prepared!”

• Plan for something pleasant to do after treatment and after the side effects diminish.

When I realized I had to get radiation every single day for more than 6 weeks, it seemed like a big chunk of my valuable time.  I resented it.  But then I decided to find something to enjoy.  After each treatment I took a little walk and explored the area around the hospital.  I made such interesting discoveries!  With chemotherapy, I had to wait for the side effects to lessen before I could consider a treat.  But I managed to find something pleasant each cycle.  Once I figured that out, it gave me something to look forward to and helped me tolerate the yucky times.

If you have any questions about treatment or need to talk to another breast cancer survivor, call our Survivors’ Helpline at (888) 753-5222. Trained volunteers, who are all breast cancer survivors, are waiting to talk to you.  Take advantage of this resource.

 Do you have any other tips or suggestions to add for women going through treatment? Leave a comment below!

 

A Brigade for Breast Cancer

This entry was written by Gina Peracchia, who’s formed a fundraising team for Yoga Unites in honor of her mother:

I know of many people affected by breast cancer in some way. I’ve known friends’ mothers, grandmothers, etc. who were diagnosed with the disease, but never in my life did I think it would hit so close to home.

My mom was diagnosed with breast cancer on January 16, 2009. It took awhile for that fact to sink in, and myself, my dad and brother were constantly going through the motions. My mom was physically and mentally suffering, and none of us knew what to do. I believe she felt alone throughout much of the beginning of her diagnosis, but when she found Living Beyond Breast Cancer (LBBC), everything changed.

LBBC has become a huge part of my mom’s life. This organization undoubtedly gave her a new perspective on life and how to live for tomorrow. After hearing her talk week after week about LBBC, and learning that she started volunteering for them, I wanted to do something to help as well. She told me about Yoga Unites for Living Beyond Breast Cancer, and how she was planning on participating in the event this spring. Because I knew she’d be busy preparing for my wedding in April, I offered to help form a team for her. A few weeks ago, the 2^nd Base Brigade was born.

Yoga is an amazing form of exercise, especially for our mental well-being. Besides being a great way to fundraise, I think it’s the perfect way to bring family and friends together, along with breast cancer survivors, to show them how much they mean to us. We want them with us for a long time to come, and Yoga Unites is a special way of helping to make that possible. I am proud to be a part of the 2^nd Base Brigade, and I know my mom appreciates all of the support from her family and friends who will be participating in the event as well. My mom is looking forward to Yoga Unites, and I am happy to say that she will be participating as a one-year breast cancer survivor.

Everything I do that involves LBBC is not only for my mom, but for others living with breast cancer. Yes, it feels good volunteering and participating in an event for a good cause, but it’s different when you’ve seen firsthand what this disease can do to a person. Their will to live can sometimes fade, but LBBC helped my mom’s will to live grow. I’m hoping others will find that peace on May 16^th as they climb the stairs of the Philadelphia Art Museum and engage in a little one on one time with their inner, vibrant spirit.

 

Get more information on Yoga Unites for Living Beyond Breast Cancer. Become a fan of the event on Facebook and follow us on Twitter.

Have you raised money for a loved one? Share your story by leaving a comment below!

(l to r) Gina's mom Susan and Gina

New Year, New Perspective

This entry was written by Erin Pianko, a breast cancer survivor who attended last year’s Annual Conference for Young Women Affected by Breast Cancer:

Erin is on the left

I was diagnosed with breast cancer when I should have been worrying about planning a wedding and starting a family. Suddenly, I found myself swimming in an ocean with hungry cancer sharks.  As well as being desperate for comfort and guidance, I also looked for humor and the glimpse of hope that my life would somehow return to normal.  It didn’t take me long to learn of organizations like Living Beyond Breast Cancer and the Young Survivor Coalition.  For many women, it takes time to warm up to the idea of attending a survivor conference.  But, hungry for information, I applied for a scholarship to attend the 9th annual Young Survivor’s Conference in Dallas. It was only four weeks after my diagnosis. 

This disease takes an aspect of control out of your life and my way of dealing with this loss was to attend the conference to meet other survivors, share my story, learn as much as I could and get involved.

Starting the Journey

The day I left for the conference I was excited and nervous.  I put my wig on and went to the airport, not knowing what to expect. 

When you wear wigs you start to spot them a mile away.  I learned this when someone approached me at the airport asking if I was attending the conference in Dallas. 

It would appear that my journey had begun before I even boarded the plane!  The survivors I met at the airport and while I was at the conference have been so important to me in this last year.  You can not put a price on that kind of support.

9th Annual Conference for Young Women Affected by Breast Cancer

Giving Back

The organizations represented at the conference gave me ideas of how to get involved to help end this disease. I have felt an obligation to give back since research done in the past is currently keeping me alive.  Six months after the conference I participated in the Susan G. Komen 3-Day Walk for the Cure and raised over $11,000.  Participating in this event was one of the most rewarding experiences of my life.

At last year’s conference, I felt the need to embrace ‘being in the club’, the club that none of us ever wanted to join. Sure it is ‘pink’…but think about what this ‘pink’ stands for: …

a united front to live life to the fullest and end this disease forever.

I have a different focus in attending the 10th Annual Conference for Young Women Affected by Breast Cancer this year.  My goal is to seek out women who have recently been diagnosed and be their cheerleader. I want them to have hope that they will get through treatment and be healthy again–words I needed to hear a year ago.  Whether you have just been diagnosed or are a twenty-five year survivor, think about attending the conference this year!

 Learn more or register for the 10th Annual Conference for Young Women Affected by Breast Cancer.

Finding humor in treatment

This entry was written by one of our volunteers:

It really isn’t funny, you know.  It’s serious.  The whole thing.  Life-threatening.  So, no laughing.  Cut it out.  Be serious. Just wipe that smile off of your face.

Except we can’t, can we?  Not always.  But be honest: aren’t there times when you look around and think, “I’m in the middle of a Mel Brooks movie except no one knows but me!”

Now this is the important message.   YOU MUST LAUGH.

Photo credit: Laurie Beck Peterson

You’ve already cried way too much.  It’s time to find the laughter. Sometimes the laughter stays hidden for a really long time and sometimes it shows up at the strangest time.

When I was first diagnosed with breast cancer (22 years ago), my husband and I were sitting in my breast surgeon’s office, receiving the bad news.  A few days before we had learned the results of the biopsy, but this was the “what do we do now” appointment. The tone was quite somber, of course.  Before the doctor outlined my choices he asked how my general health had been.  I told him I felt fine, but that I had recently had a head cold.  And then the moment arrived!  A slow smile spread across my face, the first one since “this” began.  And I said, with a big smile on my face: “But I guess it went to my chest!” 

Ok, maybe not the funniest line ever, but that was the moment I knew I could be ok. I knew if I could find a joke (feeble as it might have been), then I could find more reasons to smile and to laugh.  And I did.  I even found a doctor who understands my sense of humor and who makes me laugh. This past summer I found out I had a 2^nd recurrence, a 2^nd time with bone mets.  The first had been 18 years ago, so this really knocked me down.  And I stayed down for a while.  But by the time we got to my wonderful, funny oncologist (a funny oncologist??) the stress lifted and we laughed through the entire appointment.  We laughed at cancer, at the absurdity of all of this…we even laughed at our laughter.  And you know what? It felt really good.

Sometimes I have to get out of my head, out of the wondering, worrying, wishing.  Treatment pulls me back to those difficult places: I start to resent the familiar smells, the look of the waiting rooms, even the nurse’s nail polish.  I hate belonging where I don’t want to be. So I make a conscious effort to look for something that will at least make me smile.  I watch old funny movies (may I recommend “The Producers”-the old one and any Marx Brothers movie), I talk to my funny friends (they must promise to be funny and not quiet and “sensitive”). 

And occasionally in the waiting area at the doctor’s office, I find a kindred spirit, someone who is able to pull me away from the awful reality of this for a few minutes.   Have you had these moments?  Care to share them?  We can all use a good laugh.

Photo credit: Laurie Beck Peterson

Got something to share? Visit our Facebook Page!

 

Choosing to be Yourself

Some food for thought for the week…

• In her blog, “Life with Breast Cancer,” Kathy-Ellen Kups says,

“If breast cancer teaches us anything, it teaches us how to be our self. “

That may sound strange, since many feel like anything BUT themselves after a diagnosis of breast cancer. But Kathy-Ellen makes the point that we have to truly be ourselves to live through breast cancer, or cancer of any kind. See what else she has to say here…

• Another blogger, Kerry Osborne keeps a list of what she learned in 2009, the year she was diagnosed with breast cancer. She says,

“Life is short. Enjoy every moment. Every day you wake up feeling good and can do what you enjoy is a privilege.”

Read the rest of her list here…

Last year we interviewed women living with metastatic breast cancer. Here’s what they had to say about their experiences…

Like this video? Vote for it in CBS’ “Inspirational Quilt” contest and LBBC could win $5,000!

Behold the power of social media…

 UPDATE: Thanks to WHBM’s generosity and the support of all our Facebook fans, the promotion on Facebook raised $4,572 for LBBC!

White House | Black Market (WHBM) is running a special promotion for Living Beyond Breast Cancer…all on Facebook! Here’s the scoop:

Become a fan of WHBM on Facebook.

Post the color of your bra on the wall of their Facebook Page.

For every post, WHBM will donate one dollar to LBBC! Yes, one dollar. That can add up to alot!

This promotion will run from now until midnight Sunday 1/10. Please post and spread breast cancer awareness! We’ll post an update on the total raised on Monday!

Writing Your Way Through Breast Cancer

This entry was written by Janine E. Guglielmino, LBBC Director of Information and Strategic Initiatives:

A breast cancer diagnosis can unleash a swell of emotions, seemingly impossible to contain. During treatment, these feelings often appear manageable because you are busy learning about and fighting the disease. Then, just when you expect life to return to normal, the enormity of breast cancer can knock you off your feet.

At Living Beyond Breast Cancer, we offer a variety of tools to help you cope at different parts of your journey. One of my favorites, journaling, is also popular among many of you (LBBC workshops on this topic are usually standing room only!). Over the years I’ve heard many reasons for keeping a journal—it’s inexpensive, portable, private, easy to maintain. But for many, the greatest gift writing gives is freedom from judgment, from ourselves and from others.

I have written in journals on and off since childhood. What I love about journaling is that it allows me to dump my emotional garbage and pick through it to gain a better understanding of my interior world. At dark moments, my journal helps me find a safe path.

That’s why I was so excited to write a story on journaling for the Winter 2009/2010 issue of Insight, our quarterly newsletter. The five amazing women I interviewed for “Writing Your Way Through Breast Cancer” came to journaling in different ways. For example, Glynis Rhodes, a meeting planner at the American Association for Cancer Research in Philadelphia, started writing about breast cancer while searching for ways to thank her caregivers. (You can read several of Glynis’ poems and essays at lbbc.org.) Laurie Kingston, a communications professional from Ottawa, Canada, started a blog so she could manage the way people got information about her diagnosis. The blog proved so therapeutic that Laurie ended up writing every day and connecting with thousands of women around the world!

Despite its popularity, many people remain intimidated by journaling. “Writing should be left to the professionals,” you may be thinking, or (more likely), “In school, my papers were covered with red marks!” If you take away one message from our article, we hope it’s that you can write, if you want to. You don’t have to follow a script, or write sentences that contain a subject, verb and object (no diagramming here!). You just need to express what you feel in your heart.

Journaling is not for everyone, but if you think it might be for you, don’t let fears or bad memories keep you from trying it. Learn more about writing and other coping strategies at our January 12 networking group meeting in Philadelphia, ”Harnessing the Emotional Roller Coaster of Breast Cancer.” And don’t worry if you can’t make it; we’ll post a recording online after the event.

We’d love to hear why you write, or how you got started. Post your thoughts here, or visit our Facebook page.

A Blessing in Disguise

This entry was written by Lesley Andrews, a breast cancer survivor and supporter of LBBC:

On August 25, 2003, I awoke groggy and disoriented from an excisional biopsy on my right breast. My husband was in tears. 

“I am so sorry, but it’s breast cancer.” 

I was 38 years old.  I was in total shock and felt that my whole world was caving in.  I was so healthy – how could my body have failed me?  Yet, not only was I forced to face my own mortality, I also had to deal with the possibility of a life without children.  I never dreamt that, not only would I survive cancer treatments, but I would become the mother of three children.  

Encountering Obstacles

In January 2003, after 1 ½ years of trying to carry a baby, I went through in vitro fertilization (“IVF”).  That cycle was successful, and I became pregnant with triplets!  I was excited, thrilled and terrified.  But, sadly, I lost all three at nine weeks into the pregnancy.  After a D&C and waiting for my body to heal for two months, I completed another IVF round.  It failed.  When my fertility nurse told me that my pregnancy test was negative, I called a close friend and said, “I feel like she just told me I had cancer.”  Little did I know, I actually did have cancer growing inside of me.

After many discussions with my husband, we decided to take a month off and try naturally.  I believe that decision helped save my life.  As I often did when I thought I might be pregnant, I felt my breasts during that month to see if they were tender.  That is when I found the lump.  It seemed to have grown overnight.

One Last Try

I had a unilateral mastectomy and axillary dissection in the fall of 2003.  Before I started chemotherapy, I told my oncologist I wanted to go through another IVF cycle.  I knew it was my last chance to create embryos.  Chemotherapy would likely severely damage my remaining eggs, and I was already having a difficult time conceiving.  My oncologist was hesitant due to the possible risks associated with increasing my estrogen during the in vitro cycle.  She suggested I see a specific fertility specialist in New York City who dealt with cancer patients.  Within a week or two, the doctor stimulated my ovaries with fertility medication while giving me a breast cancer drug – an aromatase inhibitor – to reduce the estrogen levels in my blood.  This IVF round resulted in four embryos which were immediately frozen. 

Because I was on Tamoxifen, I could not safely carry a baby due to the high risk of birth defects.  We found an amazing gestational carrier who agreed to carry our baby.  We used the frozen embryos from my first IVF cycle.  After initially starting with twins, one twin died at 8 weeks gestational age.  But Melina continued to grow in our gestational carrier’s womb and was born a healthy baby girl on May 31, 2005.   

Double the  Blessings

When Melina was two years old, my husband and I decided to use the remaining four embryos from the pre-chemo IVF cycle.   The gestational carrier who delivered Melina agreed to try again.  The fertility doctor told us that, due to the type of these embryos, the chance of pregnancy was only about 15 to 20 percent.  We went ahead anyway.  I had a plan B – using an egg donor or adopting. 

I never resorted to plan B. 

Not only did our carrier get pregnant, but she became pregnant with triplets! One of the triplets stopped growing at nine weeks gestational age, but we were so fortunate to have healthy, full-term twins – a boy, Ryan, and girl, Annabel – born on May 16, 2008.   

I still mourn the loss of not being able to carry my own babies.  My whole life I wanted to experience being pregnant.  Despite the loss of never giving birth, I cannot believe how many wonderful blessings have arisen.  I know I am so lucky.  But, sometimes, in the quiet of the night, I panic, thinking I might not be here for my young children.  Then, I listen to my inner wisdom, and know, for sure, that I will. 

Melina, Lesley, Ryan, Manny and Annabel

The best advocate? Yourself.

This entry was written by Elyse Spatz Caplan, MA, our director of Programs & Partnerships.

As we move into a new year, some of you may be feeling overwhelmed. You’ve been diagnosed with breast cancer and have to make significant decisions about treatment. You may be asking yourself: what should I do? What is the right decision for me? What do the experts say?

Remember: you have options. Presenting your personal goals to your physicians can help them design plans that effectively treat breast cancer while preserving your quality of life.

In December, we grappled with these issues at the 32^nd annual San Antonio Breast Cancer Sympoisum (SABCS), where Living Beyond Breast Cancer manned (or should I say “wo-manned”) an exhibit table. Nearly 10,000 researchers and physicians from more than 80 countries convened at this four-day meeting to present the year’s most interesting research findings and to discuss implications and possibilities for future research. Advocates are highly valued at SABCS, which is why non profit, survivor-focused, organizations (like us!) are offered complimentary exhibit tables so that others can learn more about what we do.

As an 18-year breast cancer survivor, it is always amazing to see so many people come together to discuss how we can improve treatment for women with breast cancer. While we work hard with the scientific community to advance the prevention and treatment of women and families affected by breast cancer, it is not enough to simply look at the medical aspects of care. What good is all of this if the treatments developed to prevent or treat breast cancer cause side effects or other problems that significantly impact one’s day-to-day life?

It’s also important to look at the way women go about receiving care. I have watched the paradigm shift over the past decade and even longer… there is no longer a physician-directed approach to care but rather a more patient-directed approach that involves a lot of conversation between physicians and the women who consult with them. Quality of life is an important endpoint for many women and men and was never really discussed before. I’m seeing more and more women becoming advocates for their bodies, their health, their lives.

And so, we usher into 2010 with hope and optimism for improved methods of diagnosis, new techniques to treat breast cancer, and more attention to the psychosocial concerns of women living with a history of breast cancer.

Get more from SABCS at our free teleconference this Wednesday–January 6. Listen by phone or online without leaving home. Ask questions and get the answers you need for the stage you’re at. We’re here to help you get the most up-to-date information in order to have the best quality of life possible.