Living THROUGH my breast cancer timeline

This entry was written by Debra Strauss. Diagnosed with metastatic breast cancer 18 years ago, she speaks a story of hope and prevail for women who need assurance that there is LIFE after metastatic breast cancer.

It’s been HOW long?

Breast cancer sucks. Period.  I was diagnosed with stage I breast cancer when I was 35.  My children were 9 months old and 3½ years old.  I thought I was going to die.  But I muddled through.

At 40 I was diagnosed with mets to bone.  I thought I was going to die. But I battled through.

By age 50, my doctors found cancer in my other breast. By then, I didn’t think I was going to die immediately. But I did have a bilateral mastectomy.  And I waltzed through.

At 55 I walked 60 miles in the Breast Cancer 3-Day Walk to celebrate TWENTY YEARS of LIVING with breast cancer. And I walked and walked and walked through.

Two years after that walk, at 57, again the cancer spread to other bones.  By this time, I knew I was going to die.  But I also knew that it wasn’t going to be anytime soon. I’m 58– actually 58½.  If you’re reading this you probably understand how important those 1/2 birthdays are – I celebrate every one!   

I’m still muddling and battling and waltzing and walking and thriving. You can manage your life! Live your life!

Take control of your life! Here’s what I do…

• Meditate ( highly recommended)
• Pretend to exercise
• Try to eat sort-of-kind-of healthfully
• Appreciate pretty skies and happy days
• Get aggravated about dumb things ( just like anyone else)
• Feel thankful as often as I remember
• Love my family and friends
• Laugh a lot (mostly at me)
• Remember to breathe and appreciate life minute by minute

That’s pretty much it. Not much different than what most people try to do, right?  Even though breast cancer makes us different than most people, what we want in life is no different from what someone who doesn’t have breast cancer wants in life.  We want to live our lives in peace and happiness. And it’s my responsibility to make sure that happens for me.  

Share your breast cancer timeline with us! Comment here or on our facebook page and share your story of triumph!

This Thanksgiving I have so much to be thankful for

This entry was written by Dana Dukes, LBBC volunteer. Dana’s bright spirit and strong faith help her achieve the highest potential of quality of life in her journey with breast cancer. 

This is the holiday where to some, it’s just a day to go from house to house and eat all you can, watch every football game, and even go to the parade. It’s not only those things for me, but Thanksgiving is a time for me to show my gratitude to all of those who have been there for me. Most of all, however, this holiday is the time where I give thanks to my Lord and Savior, Jesus Christ.

Some might say “Dana, how can you be so thankful? You have breast cancer.” I have no choice but to be grateful. I could have gotten my diagnosis and then the next year, month, or even day, I could have fell victim to the disease. But three years have passed and I’m still here. I give all praise and thanks to my Lord. He keeps blessing me over and over again!

“Dana, how can you have an attitude of gratitude while you have breast cancer?” My recent scans came back showing that some of my tumors are decreasing while others that were once visible are not even showing anymore! He didn’t have to do it, but He did. Even when things don’t look too well, I’m still thankful because I know that it will be all right.

As we all gather around the table for prayer, I will first give thanks to God for my healing, life and all provisions that He ordained to me. I’m thankful for all three of my children who seem to be doing well in school and really taking their education seriously.  For all those who in one way or another played a role in my journey with breast cancer in a positive way, especially my mom and kids – I am thankful.        

 1 Thessalonians 5:16 – 18

 16: Rejoice always.

       17: Pray continually.

 18: Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.    

As you spend time with loved ones, cheer at the games, and eat all the food — be sure to give thanks.

 

HAPPY THANKSGIVING from Dana Dukes and the staff at LBBC!

Dana has been living WELL with metastatic breast cancer for three years. She credits her faith for bringing her this far.

Breast cancer is a part of their history too

This entry was written by Stephanie Lawrence, LBBC volunteer:

October is usually a hard month for me with all things “pink” everywhere. Five years out and I am at the point where I do not start my day thinking of my breast cancer. However, this year I had a very special surprise.

One afternoon in early October my 11-year-old son’s middle school advisor emailed me to say that my son, Bradley, wanted to organize a bake sale to fundraise for Living Beyond Breast Cancer (LBBC).  Bradley was 5 years old when I was diagnosed with stage 1 invasive lobular breast cancer. I had to undergo surgery followed by a six-month course of chemotherapy that ended with a course of radiation.

Needless to say it was a very upsetting time in our household. Bradley is a sensitive boy and I know he was extremely concerned about me and needed constant reassurance that I would be okay. Bradley is very proud of the connection our family has to LBBC. I volunteer weekly at the office in Haverford.  He often asks me what have I done at my regular Wednesday afternoon volunteer position. He has also joined me on occasion to stuff envelopes or has just tagged along on a day off from school to keep me company.

It made me so proud to drive up to school the day of the bake sale and see him behind the bake sale table leading his peers to support something he feels passionate about. Bradley and several other children in his advisory decorated a beautiful donation box and all the children and their families baked lots of goodies! At the end of the school day they set up the bake sale at the carpool line so all of the hungry tweens and teens could purchase their treats! After the last car pulled away we counted up the money they collected and we were overwhelmed with the support that we received from our school community. Bradley and his team raised $117.36!

Bradley and I went right over to Jean and the staff at LBBC. A huge smile never left Bradley’s face. Everyone at the office made a huge fuss over Bradley and his donation box! It was a wonderful afternoon with my child. This experience has filled me with enormous pride and joy. More importantly, I have realized that even though we do not talk about my breast cancer often, it has stayed with both of my children and will forever be a part of their history, as well as mine. The love and support I have received from my two boys, Jordan who is 15 and Bradley, and not to mention my husband, Richard, has been my strength through it all. I feel very lucky and blessed to be raising such fine children who want to make a difference and support things that are dear to them.

Bradley (center) was so enthusiastic about submitting his donation to LBBC. His mom, Stephanie (left), and LBBC’s CEO, Jean Sachs (right), support his efforts!

Did someone you know do something special in honor of your breast cancer diagnosis? Share your story with us!

We are soldiers at LBBC’s fall conference

This entry was written by Julie Clark:

I arrived in Philadelphia for the annual Living Beyond Breast Cancer fall conference and it was a beautiful evening. Warm, by November standards. I have the night to myself and the capitol building is grand and pale and people crowd the streets. Several men in military uniform move along the sidewalk, soldiers on leave, perhaps, and I thank them for their service. They are brave.

In some ways, they are brave like the women who filled the conference on Saturday morning. Like us, they feel a kindred spirit – an understanding that is natural to those who face battle. They are thrown together, strangers from big cities and small towns, and yet they share intimate stories and tell jokes. Sometimes they cry. They are given heavy artillery that could, and will, kill. They wear the uniform of a special unit.

At the conference, our uniforms are different. They are pink and soft. We wear scarves instead of caps, and our badges are colored necklaces that mark our rank: white for one year of survival, pink for ten. Green is for those of us who have metastatic disease. Some of us have lost parts of our bodies, and some of us live with post-traumatic stress disorder. The room hums with sisterhood and courage and power and strength as we gather in groups for combat.

But the soldiers on the street are on leave. They volunteered for battle, but we in this room found ourselves drafted into a war we did not choose and cannot leave. When a doctor told me I had cancer I felt more like the victim of a suicide bomber than a soldier – the suddenness and the unexpectedness of this news found me completely unprepared. An enemy had attacked, and I was in my underwear.

There aren’t words for the shared experience of this, but here, in this room, we all feel it. As an only child I had not known the depth of sisterhood, but I feel it now. My sisters are of different ages and races and religions, old enough to be my mothers and young enough to be my daughters. We are united in this battle and, in so many ways, we are proud.

We are proud because we are strong. It is palpable, the strength in this room. We fight for ourselves and our families and our future – we fight for our faith. We pray that we will see this war end, and that those who do not fight beside us will never have to. And to my sister soldiers, to all of them, I say this: Thank you for your service.

 

Julie Aigner Clark is the author of the picture book You Are the Best Medicine, which helps empower children to feel supportive during the cancer treatment of a loved one. Order your copy today!

Six years after I was diagnosed – I remember LBBC’s Survivors’ Helpline

This entry was written by Jo Ann Cottman of Jeffersonville, Pa. LBBC is pleased to share that over the last couple of weeks, we’ve seen a rewarding boost in helpline calls. It means a lot to the organization that we are able to provide a program that is fundamental in supporting women diagnosed with breast cancer.

I was diagnosed with breast cancer in November of 2004. The night before I was scheduled for my first six month mammogram, a follow-up appointment after my surgery and radiation treatment, I was very anxious and could not sleep. I read Dr. Marisa Weiss’ book, Living Beyond Breast Cancer and it dawned on me that I had a card with LBBC’s Helpline phone number. Dr. Marisa Weiss, founder of LBBC and my doctor at the time, offered me the number.

I called about 10 p.m. and left a message. In a very short time my call was returned by a Helpline volunteer. I explained to her what I was feeling. I told her that I could not understand why I had these feelings because I felt that I should be strong. She heard my tears, she listened to me, she talked with me and she helped me to understand that it was ok to feel the way I did. Even though I felt the need to encourage others, I needed words of encouragement and hope also.

I will always think of that Helpline volunteer as my sister — someone who understood my feelings because she had taken the same journey. I will always be thankful to LBBC for providing this outstanding support program for women affected by breast cancer. This Survivors’ Helpline provides someone that will listen, provide information and more importantly, care.

Jo Ann shares her breast cancer story during the White House | Black Market photo shoot and credits LBBC’s Survivors’ Helpline.

To request a call from a Helpline volunteer, submit your availability here. All Helpline volunteers are professionally trained to be able to offer you support and guidance in efforts to aid your concern. You can also access external resources that may be viable to your treatment plan, especially in times of financial need.

Call the Helpline toll-free number at 888-753-5222 on Tuesdays from 11:00 a.m to 3:00 p.m. to speak to a live Helpline volunteer. We also encourage you to leave a message and within 24 hours of your message a Helpline volunteer will call you back!

You can get your GROOVE back

This entry was written by Sabitha Pillai-Friedman, PhD, LCSW. Sabitha will lead the Sex Matters! Finding Your Groove workshop at this year’s fall conference this Saturday.

As a sex therapist, I treat a fair number of women affected by breast cancer and their partners. As the relationship and sexual issues unravel in my office, I have learned that women and their partners face many layers of challenge in reclaiming their sexuality.

Stress, depression and anxiety that accompany stages of breast cancer treatment can impact greatly on a sexual re-adjustment. For example, chemotherapy and endocrine therapies can result in menopausal symptoms such as vaginal dryness, night sweats and/or hot flashes.

Breast cancer diagnosis, treatments and the aftermath can be an emotional and challenging time for most women and their partners. Although reconstruction has come a long way in providing women with great cosmetic results, most women I treat struggle to eroticize their reconstructed breasts.

How can women eroticize their new bodies and reclaim their sexual self?

1. You and your partner need to make it a priority to reclaim your sexuality. It requires some research, work and commitment.
2. Talk to your oncologist, gynecologist or sexual health provider about symptoms that interfere with sexual function, such as low desire, pain and vaginal dryness. Medical providers may selectively recommend topical estrogen creams that may address some of the menopausal symptoms that affect sexuality. Sexual health providers may recommend dilators with lubricants to prevent and treat vaginal atrophy.
3. Make use of sexual fantasy material and self-pleasuring.
4. Take relaxing baths. Practice breathing exercises, meditation and massage.
5. Buy lingerie and clothes that feel “sexy!” The Internet has made it very easy for women to purchase fantasy material and sex toys anonymously.
6. Broaden your interpretation of sex. Remember that there is more to sex than intercourse. Cuddling, kissing, elaborate foreplay, sensual massage, oral and manual stimulation can provide a way to stay connected when intercourse is not possible.

First of all, re-building one’s sexual self-schema can be challenging and it requires the skills of a trained sex therapist. In simple terms, sexual self-schema is your perception of yourself as a sexual being.  When one’s body is altered drastically through surgery like a lumpectomy and mastectomy or through hormonal therapies, one’s sexual self-schema is altered.

Secondly, the role of partners in supporting women through this journey toward sexual (re) adjustment is a very important one. Self-image plays a very important role in reclaiming one’s sexuality. Partners need to find ways to make the woman feel attractive and sexy with verbal and non-verbal acknowledgements. It is important for both partners to re-conceptualize sexual behavior. I often ask couples to recall their teenage years when “making-out” was so much fun!

Watch Denise McCrossin’s take on how she found her groove after breast cancer treatment. Her husband expresses that beauty is something that comes from within and despite the intimacy changes that impacted their marriage, Denise remained the most beautiful woman in his eyes.

Be sure to read Sabitha’s follow-up blog that will highlight single women. She will offer advice to them when seeking their sexuality after breast cancer treatment. Are you willing to share your personal experience on this topic? Start posting to our Sex and Intimacy message board!

 

Find a workshop for your specific breast cancer concern

This entry was written by Tyesha Love of Philadelphia, Pa. When Tyesha attended LBBC’s fall conference last year, she was very impressed with the information that she learned at the workshops. Click here to learn more about this year’s fall conference workshops.

When I stepped into the Pennsylvania Convention Center for Living Beyond Breast Cancer’s 2009 Annual Fall Conference, I felt a sense of warmth, elation and familiarity. I was amongst family. I had something in common with all of the attendees and it was comforting and exciting. As I sat and enjoyed a continental breakfast, I could not stop looking around the room at all the many faces of cancer: women affected by the disease, caregivers, supporters, doctors and educators. At that moment, I realized I was never alone in my season with cancer.

As the opening plenary speaker began, I looked around the conference room and associated the colored leis around the necks and wrists of each woman/caregiver. The leis identified their status with or connection to cancer (e.g. orange – diagnosed within one to three years; blue – diagnosed between five to seven years; white for caregivers; blue for metastatic cancer, purple for medical provider, etc.)  Each received a whispered prayer from me for healing, continued improvement of health, peace, comfort, strength, knowledge, empowerment and hope.

After a break for which attendees could network and visit exhibitors, I eagerly proceeded to my first workshop – Fear of Recurrence: Controlling Worry and Anxiety. As I am BRCA 1 positive, my risk for recurrence is much greater than someone without the mutation.  Because cancer is so prevalent on my mother’s side of the family and with my personal history with cancer, I found myself suffering with anxiety even after I completed my treatments and surgeries.   

Ruth H. Steinman, MD explained that it is common for survivors to fear recurrence, no matter the stage of their cancer at diagnosis. She discussed the emotional responses to uncertainty – e.g. anger, hope, worry, gratitude – and ways to communicate to love ones, touching on the emotional support that is needed when internal fears or outside triggers emerge. I learned that outside triggers can consist of tests, anniversary of diagnosis/first treatment/surgery; or hearing of another’s diagnosis or cancer related death.

Exercise, eating healthy, meditation and breathing techniques were discussed to teach how to manage anxiety. Ideas were suggested to better manage life’s activities to avoid being overwhelmed. Educating and being empowered will comfort you in knowing you’re not alone and there is help where you can share your anxiety. Creating a new normal – life after cancer – can help cope with post-cancer distress.  Seeking support from family, your community, health care providers and finding therapeutic ways to direct energy were also valuable points taken from this workshop.

After lunch and networking, I headed over to my preference for workshop 2 – Body Image: Exploring & Embracing Transition. Having had a bi-lateral mastectomy with implant reconstruction, it was a challenge getting accustomed to my new body image. I struggled with feeling feminine and feeling sexy after my mastectomy. I was reluctant to expose my reconstructed body. There can be challenges with feeling beautiful and confident whether single or in a relationship. Coming to accept your new body image after such treatments and/or a drastic procedure can be a troubling process.

Everyone was given the opportunity to express their challenges with body image and share a story about their transition. Afterwards, Linda Abrams, PhD discussed how to manage feelings about your body after a cancer diagnosis, treatment and/or surgery. Suggestions were made to help women affected by breast cancer “look good and feel better!” Dealing with fears of intimacy, accepting new body images and embracing the transition were also taught. Dr. Abrams also discussed communicating with your significant other about how you are feeling about your body and how they can help you overcome the struggle with body acceptance and self-image.  

Many people truly benefit from LBBC’s Annual Fall Conference workshops. They provide valuable information no matter what your position – women diagnosed with breast cancer, caregiver, loved-one or educator. From the latest medical developments to wellness news, each workshop will send you home with a new outlook on survivorship and a stronger sense of hope.

Tyesha attends to 2009 fall conference to learn more about her specific breast cancer concerns through the conference workshops

To register for this year’s fall conference on November 13th, visit LBBC’s website. It’s not too late to register and sign up for workshops that are specific to your diagnosis. Call us today to find out if you qualify for a fee waiver!

I told my daughters the ‘news’ at the kitchen table

This entry was written by Julie Clark, author of You Are the Best Medicine. Look out for Julie at this year’s Fall Conference where she will sign copies of her new children’s book, which highlights interactive dialogue on how to talk to your children about breast cancer.

My kitchen table has stories. It has been the center of so much more than food. It has seen homework and art projects, Scrabble games and crazy eights. We read the newspaper and drink coffee here. I started my first company, Baby Einstein, at this table. The kitchen table is where our friends gather, not the spacious living room or the comfortable den. And though it is made of plain wood and been the victim of ketchup spills, crayon scrapings and fork stabbings, there is a kind of warmth to it unlike any other place in our house.

So it seems both right and strange to have told my children the terrible news “Mommy has cancer” at this table. After all, it was a where we had shared so much. Why not this? To be truthful, I needed the comfort of this place to help me.

What is worse than hearing you have cancer is telling your kids that you have it. No matter how old they are, everyone knows this truth: Cancer is Bad. It’s ugly. Have you ever seen a close-up photograph of a tumor cell?  It doesn’t belong at the kitchen table. I would spray it with disinfectant and scour it away if I saw it there.

It doesn’t belong in my body, either – and yet, there it is. I do my best to scour it away. Chemotherapy doesn’t seem much different than the chemicals I use to clean the kitchen table. It serves the same purpose. Remove the stain.

I sat at the table with my daughters, and I said these words: “Mommy has cancer, but I’m going to be okay.” I’m quite sure it was not the only half-truth that had been told at that table, but it was certainly the most important one. There was a stain, and mommy was going to do her best to remove it.

There are a lot of theories about how to approach this disease with a child, but I haven’t read them. I’ve done what feels right to me. I’m an expert because I have children and because I have cancer. This gives me a kind of credibility unknown to a psychiatrist or child-rearing expert. I believe that allowing my children to have hope remains a critical part of my survival, and theirs. Was I going to be okay? I still don’t know. But I need to believe.

I wrote a picture book for children called You Are the Best Medicine, and it’s based on my belief in hope and love. Although I know that hope and love alone won’t cure me of cancer, I do believe these things have a powerful effect on my life. I really believe it has helped my daughters. If this book can help to soften the terrible news “Someone you love has cancer,” it’s done its job.

We meet at our kitchen table as a family, and it is somehow right to talk about our most intimate stories here. It is here we say grace, and ask for it.

 

 

Julie Clark (far right) and her two daughters share a family moment

In 2004, Julie was diagnosed  with non-invasive breast cancer. At the time, her two daughters were very young. By 2008, Julie would have to tell her daughters that the cancer has returned and the doctors found a spot on her liver. Listen to Julie’s take on metastatic breast cancer in the “Faces of Metastatic Breast Cancer” video and read her blog, “Living is what we strive for.” 

To register for LBBC’s fall conference, News You Can Use: Breast Cancer Updates for Living Well, visit our website today. It’s not too late to register and you may qualify for a fee waiver.

 

 

10-year survivor — life-long conqueror

This entry was written by Charron Walker who just celebrated her 10th year cancer free:

Charron Walker celebrates 10 years of being cancer free

I live by this quote: “I have been through a lot to do this; everyday is a faith walk for me. God spared me for a reason and this is my purpose!”

I found a lump in my right breast while I was in the shower doing a monthly self-breast exam. I was thirty-two years old.  My mother passed away from breast cancer at the age of thirty-four, so I knew that me or my older sister would inherit the gene for the big “C.” I never thought I would get it because I was so young.

I had big plans for myself after graduation. In a matter of days, everything changed. I was going to find a well-paid job in Human Resources, pay off my student loan and begin to move into the next stage of my life. I wanted to get married, have children, get a dog and have a big house with the white picket fence.

 I was diagnosed with Stage I Infiltrating Ductal Carcinoma. I was frightened beyond words. I never had a major operation before so all of this was new to me. This was my first day of being cancer free. The next step in my personal journey was to start chemotherapy. I was petrified. I heard horror stories about the treatments and could not fathom being physically sick, losing my hair or putting something that toxic in my body.  My head was swimming with all kinds of thoughts: Am I going to get through this? How sick am I going to get? What will I look like with no hair, eyebrows or eyelashes? Is this all worth it? God, are you still here? I was battling mentally, physically and emotionally to survive.

I lost my hair the day before Christmas Eve. It was a bad holiday for me but I was alive. The treatment, in itself, was a difficult hurdle to overcome. Each medication I took had bad side effects. I had insomnia, depression and nightmares. I worked Monday through Thursday and took the Friday off to have chemo. I did not have to but I chose to work through all my treatments. It brought a sense of normalcy to my life. It was my therapy.  

The final step in my journey was hormone therapy. I had to take one pill everyday for five years. With this medication, I was pushed into early menopause which included hot flashes, mood swings, etc. In 2006, I started Young Survivors Network, a program for young women survivors of breast cancer.  Our mission is to educate, support and advocate for young women who have been diagnosed with this disease.

I’m not “just” a survivor, I’m a conqueror! I am in my 10th year of survivorship and I am taking it one day at a time. I don’t have a fear of dying but every now and then I am confronted with the thought that cancer might return. I am sometimes afraid it could come back in my other breast or another part of my body. When these overwhelming fears rage, I immediately say “God promised I was healed.” These powerful words bring peace, comfort and hope to me. The fears are quieted and put to rest.  I am determined to live life to the fullest!

Charron attended LBBC’s annual gala this year, joining 24 other remarkable women who participated in the White House | Black Market campaign for Breast Cancer Awareness Month

We want to hear about your milestones and how you’ve journeyed through your breast cancer diagnosis like Charron! Comment here or on our Facebook page!