How to Interact With a Bald Person

Trip (Katherine) Griffith is a participant of Writing the Journey, an online writing workshop for women affected by breast cancer led by experienced facilitator, author, poetry therapist and breast cancer survivor, Alysa Cummings.The poem below was written for the workshop. Read the first poem we published by Trip, “Normal Has No Place”.

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Meet my gaze, look me in the eye
No lashes makes me blink and cry
But my eyes are still windows to my soul
I’m still me, still here inside this altered body, peering out at you
No lashes to hide behind, no raised eyebrows to ask,
Can you see me? Do you want to?

Don’t look down, don’t turn away
I don’t need your pity
Your gloomy cancer death stories
I’d appreciate a smile, a nod
A warm hello, some normalcy
Why can’t you meet my eyes with your own?
Why can’t you sense the compassion I feel for you?

If I make you sad, remind you of someone dead and gone
Please don’t tell me. It is not helpful.
I am still a promise, still a possibility, still standing
If you really saw me I think we might share a real moment.
A look of understanding only fellow travelers on this road possess
You would see the funny reactions to my hairless face
Those who call me sir before they see my pink sneakers
The back pedaling, the tap dance, the stammers

The shock in their eyes when they realize their mistake
My wish is for our eyes meeting, truly seeing each other
I’d rather share our tears and our laughter.


Trip (Katie) Griffith is a stay-at-home mom to three teenagers and enjoys writing, painting, gardening, kayaking and just being outside. She was diagnosed with stage IIB ER/PR-positive, HER2-negative breast cancer in 2013. After surgery, chemo and radiation, she is currently dancing with N.E.D. (no evidence of disease). Her online connections to other people with breast cancer, including those through the LBBC writing course, Writing the Journey, have been an essential part of her support system since the day she heard the words “you have breast cancer.” 

Five Tips for Easing Into Your Healthy Life

America’s Nutrition Coach Dr. Ro shares tips to help you live healthful after a breast cancer diagnosis. Hear her speak at the 2016 Living Beyond Breast Cancer Conference: Individual Treatments, Shared Experiences
It isn’t easy. Only those who have had the experience truly know what it feels like to receive a breast cancer diagnosis. Even with the notion of having to contemplate what happens to your family, how the kids will be cared and provided for, loved and nurtured; all at the same time that you must do all you can to survive has to be among the most daunting of life’s challenges.

But, as the poem so beautifully penned by Maya Angelou instructs, “And Still I Rise,” you must! So instead of allowing yourself to be paralyzed by fear let’s take a short time-out to re-assess how best to arm yourself for what could arguably be the fight of your life, with five simple tools to improve your health, stave off unnecessary weight, and feed your body (and soul) what it needs to heal and improve yourself overall. I will say more about each of these tips plus provide more helpful information to support you throughout your experience with breast cancer, as your opening keynote speaker. I hope you’ll join me in Philadelphia on Saturday September 24, 2016 at the 2016 Living Beyond Breast Cancer Conference: Individual Treatments, Shared Experiences, held at the Pennsylvania Convention Center.

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I hope to see you there, but for now…Here are my simple tips that, if practiced consistently, will result in a big pay-off!

MAINTAIN A HEALTHY WEIGHT

For breast cancer survivors, this is of paramount importance because doing so can lower the risk of breast cancer recurrence. If you are a breast cancer survivor (or know someone who is), the decision to maintain a healthy weight literally improves your survival. Several studies suggest that gaining weight after a breast cancer diagnosis increases the risk of breast cancer recurrence, breast cancer deaths and mortality overall. Here’s how you can protect yourself:

  • If you are overweight or obese now, lose the excess pounds gradually and consistently because you are more likely to keep them off using this strategy
  • I recommend losing the weight 15 doable pounds at a time. Studies show – and my patients agree – that their weight loss is more achievable, regardless of goal weight, when they can wrap their brains around a small amount at a time and build from there to reach the goal

EAT A HEALTHY DIET

Even though scientists may not fully understand the role of diet in breast cancer survival, what we do know is that a balanced diet of mainly colorful vegetables and fruit, high-fiber complex carbohydrates, lean protein – including beans and seeds as sources – and healthy fats, all increase positive health outcomes.

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I recommend that you design your plate so that half of what you put on it consists of vegetables and fruit, for the remaining half divide that in two, making one-quarter a 3 to 4 ounce portion of lean protein (fish, chicken, turkey, small amounts of red meat, beans, include eggs and egg whites, seeds and nuts); and the final quarter of the plate should consist of whole grains (quinoa, brown, wild, and black rice; whole grain or gluten-free pasta).

I also recommend that you

  • Cut processed foods and replace them with as many whole, fresh, unprocessed or minimally processed foods as possible
  • Cut added sugar
  • Drink water with every meal and snack, add lemon wedges to reduce inflammation in the body which can result in conditions that run the gamut from achy, painful joints and muscles to breast cancer. Inflammation in the body shows itself as chronic disease

GET MOVING

Many studies show that breast cancer recurrence is less likely in the lives of active survivors. That’s not all; breast cancer deaths and those from other causes are reduced for those who lead active lives.

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To start: Hit the mall, a track at a local school, or the pavement in your community and just walk. Make it a daily commitment. Add hills and or time, gradually to increase calorie burn. Add to your routine by doing exercises such as squats while vacuuming the carpet or brushing your teeth.

GET PLENTY OF SLEEP

Inadequate sleep can interfere with your body’s ability to lose excess pounds. Aim for 7-8 hours of sleep per night for your best results.

BE MINDFUL

Dedicate 15 minutes of your day to get centered, quiet and to re-organize your thoughts in a way that supports your healing and increases your personal spiritual power. Use this time to connect to a power greater than yourself and to be reminded that through that power you are not ever alone.

There are 15-minute mindfulness practices in Dr. Ro’s Final 15 because like you, the patients in my office practice and the clients in my coaching practice lead very busy lives. So for them and for you, I provide prayerful meditation and walking meditation practices to help cope with stress. It works wonders.

To give your very best to the healing process for breast cancer or any disease requires that your body be at its best—physically, mentally, and emotionally.

Try these simple tips and give your body, mind, and spirit the boost needed to fully support you.

 

See Dr. Ro’s special presentation  on Saturday,  September 24 for the 2016 Living Beyond Breast Cancer Conference: Individual Treatments, Shared Experiences in Philadelphia!

For Dr. Ro’s weight-loss Strategy and 3-phase meal plan, tasty recipes, and 15 minute workouts and stress-reliever mindfulness practices, pre-order her new book, Dr. Ro’s Final 15: Eat 15 Servings A Day, Lose 15 Pounds At A Time (Rodale) here: https://everythingro.com/final-15-book/

Stay Connected! Join Dr. Ro’s newsletter and Facebook community: https://www.facebook.com/1drro/

Metastatic Diagnosis Provides Teachable Moments: Catalina Tamayo

Written By Robin Warshaw, Contributing Writer

Although she was a nurse, Catalina Tamayo admits she didn’t really understand what it meant when she was diagnosed with HER2-positive metastatic breast cancer at age 31. So she’s not surprised that some of her co-workers don’t understand either.

“When I say I was diagnosed four years ago as stage IV, they say, ‘Well, you’re cured now, right? Because you look fine,’” says Catalina, who lives in Petaluma, California with her 9-year-old son. “I’m constantly having to explain to my fellow nurses and doctors (if they’re not in oncology) what it is to have metastatic disease.”

Outside the medical profession, more people don’t get it. They ask when her chemotherapy will end. “I have to educate them that I’m always going to be getting some kind of treatment. That if I stop, then the cancer will grow and I’ll die faster.”

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After diagnosis, Catalina’s oncologist urged her to join a phase I clinical trial at a hospital in nearby San Francisco. The trial gave her a standard chemotherapy medicine but added a new medicine under study, which she took as a pill. She also received trastuzumab (Herceptin).

During 6 months of weekly trial treatment, she developed severe nerve pain from the chemotherapy. Her scans showed no evidence of disease. “I told the doctor I need a break,” says Catalina. “I was thinking about my quality of life.” She left the trial, switched to other chemotherapy and stayed on trastuzumab.

Navigating Relationships

Catalina’s son had just begun kindergarten when she was diagnosed. “As long as he’s had memories, he’s only remembered me with cancer,” she says.

These days, he doesn’t want to talk about her breast cancer. He gets sad when she can’t go on school trips like other parents because she has doctors’ appointments. He asks why he can’t have a sibling, although he understands she is unable to have more children because of ongoing treatment.

Catalina and her son are very close. She encourages him to do things with other people, but he resists. “I don’t know if it’s a fear of me not being here,” she says. “I’m trying to get him to be more independent.”

Her family lives 2 hours away. Before breast cancer, she drove to see them, but treatment, work and financial strain made that too hard. “My family doesn’t drive out here because they’re really poor and can’t afford the gas,” says Catalina.

She’s also lost connection with some people she once considered friends. “When I was first diagnosed, I asked a friend to take me to chemo. She said, ‘I already made a hair appointment for that day.’”

Catalina attended LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in 2015 and other conferences. She finds support in online groups for young women with metastatic disease. “It’s kind of a sisterhood,” she says, where she can talk about worries and frustrations, ask questions and share suggestions. “We all help each other.”

A New Job

Most of Catalina’s medical bills were covered while she was in the clinical trial. After switching treatment, her health insurance from work paid part, but out-of-pocket and co-insurance costs created medical debt. She changed jobs, now pays her own health insurance premiums and has fought with the insurer about wrong charges and coverage denials.

Catalina was hesitant to talk about her diagnosis at her new job as a medical-surgical nurse. Often assigned to post-mastectomy and other cancer cases, she gradually opened up about her experiences to patients and co-workers. Telling her story in this setting inspired her to work in chemotherapy treatment. She’s now waiting for her employer to approve funding so she can take the classes and training she needs to become a certified oncology registered nurse

“I feel like because I know what it’s like to have cancer, I have a better understanding of what people are going through,” she says. “I can better empathize with them.”

 

Learn more about clinical trials for metastatic breast cancer.

This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

Through a Child’s Eyes: Cheryl Gordon

Written by Robin Warshaw, Contributing Writer

Women who are diagnosed with breast cancer and have young children may worry more about how the experience will affect their kids than themselves.

Cheryl Gordon, 41 of Kirkland, Washington, understands that fear from both sides. She was 5 years old when her mother went through treatment for inflammatory breast cancer (IBC) and died. When Cheryl, a university teaching associate in education, was diagnosed with stage IIb breast cancer, her oldest child was also 5.

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Robin: Before your diagnosis, were you concerned about your family health history?

Cheryl: I was told there was no genetic component to IBC. I’m not convinced of that anymore, but my whole life I was told that [by family and a few doctors].

My mother was the only one in her family with breast cancer. She was diagnosed around 1980, when she was 31. I started having mammograms at 27 and they were always negative. I was diagnosed at 39, in 2014.

I think it was always in the back of my mind that this would happen. It’s one of those things you have to push aside. I couldn’t go through every day being afraid and waiting to be diagnosed. But, certainly, when I was diagnosed, I had the sense of, “Oh, of course!”…because I always felt I would probably have cancer.

Robin: When you were diagnosed, did you immediately realize that your son was the same age you were when your own mother was diagnosed?

Cheryl: Yes, and I think that was the hardest thing for me. Going through diagnosis, surgery and treatment, I felt I was living it through my 5-year-old eyes, watching my mother die, and as a mother with cancer. I know what it is like to have your mother die when you are young and I’m terrified that my children will also have to experience that pain.

Robin: Who told you your mother had cancer? What was it like?

Cheryl: I have an older sister and a younger brother, so he was only a baby. I remember my dad sitting my sister and I down and talking to us about it. And I remember being scared. My sister kept telling me, “It’ll be okay.”

I was understanding it on a 5-year-old level: Yes, mom is really sick but she was still doing normal, everyday things. She went through chemo, so her hair fell out. We thought her wigs were funny, so we would play with them.

A lot of family would come and visit. She would be too tired, so would rest a lot but in a family space. We would play nearby. She would lay on the floor because her joints hurt and the cold floor made them feel better.

Robin: Did you know about your mother’s treatment?

Cheryl: I’m not sure how clear my parents were about what was going on. She was in clinical trials and, with some of the medicines, her emotions would be all over the place. I have distinct memories of her having huge tantrums.

I don’t think I had any understanding of just how sick she was until she went to the hospital. My dad told me she was so sick she had to be closer to the doctors all the time. We went to see her in the hospital and she died a few days later.

Robin: What were you feeling?

Cheryl: I remember other kids thought it was really scary. To lose your parent, to other kids, that made us the weird kids.

Breast cancer was so taboo then. It wasn’t really talked about. Our teachers in elementary school tried to help, but they made it so much worse. I just wanted to be normal. I wanted, more than anything else, to be like every other kid in the class.

On Mother’s Day, we had to make cards. I remember thinking, “What do I do with my card? I have no one to give it to!” My dad tells the story that I asked him and he said, “Well, you can give it to me.” And I did. Every year.

Robin: How did you tell your sons (ages 2 and 5) about your diagnosis?

Cheryl: My husband and I decided to wait to tell our kids until we really knew what was going on. So I did all the testing, had an MRI and then met with my cancer team. After that, we talked to our kids individually. We said I had a “special sickness” in me and the doctors were going to take it out.

My older son had surgery the year before, with a cast afterwards, so I said I would have surgery and would have bandages. He could understand that because he had experienced it.

We talked about chemo as a “special medicine,” not the same as the Tylenol they take, that would make sure everything was gone. We explained that my hair would fall out and I would be very tired. I showed them my port, so they could touch it.

During this time, I heard my 5-year-old telling his friends, “You have to be gentle with my mom. She has this special medicine and her hair is going to fall out. Isn’t that funny? She’s not going to have any hair.”

Robin: How did your kids handle what went on during treatment?

Cheryl: My older son had a lot of anxiety around my surgery and chemo. He had a hard time because I looked so different, I was so tired and there were so many people in our house, helping. During chemo, I always wore a hat around them both. It scared them to see me without hair.

For my younger son, radiation was really hard. I think it was because I was gone every day for a couple hours. He was super clingy and would cry. He’s now 4 and still struggles with it. He still would rather be at home with me than anywhere else.

Robin: What were your feelings about that?

I had a lot of guilt that I brought all this fear, worry and sickness into our house. Even though I obviously did not want cancer, I had to look at my kids and see how scared they were.

 

This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

 

 

Normal Has No Place

Trip (Katherine) Griffith is a participant of Writing the Journey, an online writing workshop for women affected by breast cancer led by experienced facilitator, author, poetry therapist and breast cancer survivor, Alysa Cummings. Trip wrote the poem below while in the program.

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When I hear the words “new normal”
Applied to my life after cancer,
My teeth itch, my fingers curl,
My eyes squint, my ears ring.
I rejected normal long ago.
All those wretched shoulds and oughts
Boxing me in, shutting me down.
An itchy wool coat, stretched tight across my back.

So many words can describe my life,
My past, my present, my future.
Old favorites fit like a glove,
Soft and worn in all the right places,
New garments hang on my frame
As I slowly grow into them.
Words I choose, hope to achieve,
Or shed as I outgrow them.
Descriptions placed on my head
By happenstance or fate.
But normal has no place.

Overcoming Fear of Family History: Caitlin Kelly

Written By Robin Warshaw, Contributing Writer

For most of her life, Caitlin Kelly was afraid of cancer. Her grandmother died of ovarian cancer at 57. Caitlin’s mother, then 37, was treated for early-stage breast cancer. Twin aunts on her mother’s side both had ovarian cancer and died. A maternal great-aunt died from breast cancer, as did that woman’s daughter.

“Since I was a little girl, there was always the presence of someone being ill,” says Caitlin, 33, who lives in South Portland, Maine.

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In her teens and 20s, she became aware that changes or mutations in a BRCA1 or BRCA2 gene can run in families, causing higher risks of breast and ovarian cancers. Genetic testing can determine if a woman or man has a BRCA mutation.

Her mother’s diagnosis happened before BRCA testing was available. One aunt later tested positive for a BRCA1 mutation, but her mother thought Caitlin was too young to be tested and have the burden of results weighing on her. Caitlin believes her mother was trying to protect her from discrimination related to genetic information.

As she got older, Caitlin heard that women should start being screened for breast cancer 10 years before the age at which their mothers were diagnosed.

“That would have been when I was 27, but I was too scared,” she says. Having breast cancer or ovarian cancer “was something I thought was probably inevitable but I just wasn’t ready to face.”

Delaying Action

Instead, like many young people, she focused on school and her career. She was close with the aunt who was BRCA-positive and who had lived with ovarian cancer for 6 years, so “when she passed away, it was really difficult for me. I think that contributed to my fear,” she says.

Her mother was diagnosed with breast cancer again when Caitlin was 29. This time, it was in the opposite breast and was a more aggressive type. She tested positive for a BRCA1 mutation.

Caitlin took time off from working as an apparel designer to help her mother in Massachusetts. Her mother’s doctors strongly advised Caitlin to get breast cancer screening and genetic testing. At her mother’s first chemotherapy session, the doctors had a genetic counselor come in to speak with Caitlin.

She did not follow up with the counselor. “I had a really hard time with my mom getting cancer a second time. I couldn’t possibly think about myself,” she says. The pressure from the healthcare professionals made her feel uncomfortable, “even though I know to this day that it’s really great they pushed me.”

About two years later, Caitlin went for her first mammogram. She had early-stage, hormone receptor-positive, HER2-positive breast cancer in one breast. She also tested positive for BRCA1.

Paying for Fertility Preservation

After talking with her surgeon about the characteristics of her cancer, genetic risks and family history, Caitlin decided to have a double mastectomy and reconstruction. The surgeon encouraged her to see a fertility specialist about freezing her eggs before chemotherapy might damage them.

“I had to accept that other people needed to help me.”

Having children hadn’t been in her thoughts. She had just started dating a man two weeks before her diagnosis. They are now in a committed relationship.

Under pressure to act quickly before chemotherapy, she was upset to learn it would cost $6,000 for egg removal plus one year of freezing. “I don’t have that kind of savings and they don’t do the procedure until you pay all of it upfront,” she says.

Independent by nature, Caitlin didn’t like being public about her situation, yet realized “I had to accept that other people needed to help me.” Her mother started a blog to tell friends and family what was going on. That inspired Caitlin’s cousins to set up a GoFundMe page to raise money for egg preservation. The cost of fertility medicines was covered through LIVESTRONG Fertility.

She had 32 eggs extracted and frozen. The eggs can be tested for genetic mutation before being used, a fact Caitlin calls “a silver lining.”

“That means I can hopefully not pass this down to anybody else if I’m blessed with a child,” she says.

In that way, she can help write a new chapter of family history.

…we hope it will speak to all of them.

As a founding partner, along with Andrew Geroski, of Left Hand Creative, LLC, Nat Gutwirth has been practicing as a copywriter, producer, creative director and content developer in the Philadelphia area since “the advent of movable type.” Ten years ago, Nat worked with LBBC in the creation of a number of marketing pieces promoting our programs and services.  This past March, Left Hand served as the creative lead in the development of our “You have Breast Cancer” 25th Anniversary awareness campaign.

 

You have Breast Cancer. The moment a woman hears those words for the first time, as eight hundred newly-diagnosed patients do every day in America, everything changes.

The disease impacts every aspect of a woman’s life, from her private self-image to her public self-confidence. Relationships, family, career, intimacy, pregnancy and childbearing—the repercussions of living with breast cancer are everywhere, coloring every experience and complicating every choice.

We Have Experience (1)

And yet, experience tells us that the the sooner a woman comes to terms with this new reality, the better she will be able to adapt and respond, focusing her time and attention on finding the best strategy for her treatment and for her life.

Speaking personally, I know about this as far too many of us do—because breast cancer has touched, and taken, the lives of women I love. But as a man, I don’t, and can’t, know it from experience. I can’t feel what it feels like. 

So Does Everyone (1)

So when my partner in Lefthand Creative, Andrew Geroski and I, were asked by Living Beyond Breast Cancer to create a new advertising campaign in conjunction with the organization’s 25th anniversary, we at first intimidated by the challenge. What qualifies two men whose chances of contracting the disease are thankfully remote, to craft a message that will resonate with women at such a vulnerable moment, a moment outside of our firsthand experience?

Now What (2)

Fortunately, we knew we had an extraordinary resource to draw on in the staff and volunteers of LBBC. Having worked with the organization back in the 1990s, we were aware of the power of experience that differentiates LBBC from every other breast cancer charity. The wisdom and vision of the LBB team are the product of a direct understanding of what the disease is, how it behaves and what it feels like from the inside. And the passion they bring to their work is fueled by that first-person understanding of the pain, fear, anger and isolation every woman with breast cancer must feel and the determination, perseverance and optimism she must find in herself to push forward, and live beyond.

Theirs was the insight that guided us to create the campaign we ultimately presented to LBBC. The face of the brand will be the faces of those real women, and the call to arms will be the four words that each of them has had to hear, process and move beyond: You have breast cancer.

Now What (4)

Our charge was to address the woman who has just been diagnosed because she stands to benefit most from the support, advice and services LBBC provides, and because her involvement at this early stage has the greatest potential to help her become a part of the solution for the benefit of the eight hundred women who will be diagnosed tomorrow, and the day after, and the day after that.

As of this writing, it is too early to know if the campaign will succeed in its objective to reach hundreds of newly diagnosed women, or to motivate them to reach out to LBBC. But for all of us who worked on its development, including our colleagues at Tandem Associates who set the strategy and led the process, and LBBC leadership who provided priceless guidance and expertise, the results have already been enormously gratifying.  In previewing our messages with breast cancer survivors, we have seen reactions of recognition, acceptance and identification. So if this campaign speaks to any woman with breast cancer, we hope it will speak to all of them.


25th Anniversary Mark

Stories for our 25th Anniversary Blog Series will be published throughout the year.  If you have a story you’d like to share about your history with LBBC that might be featured as part of our series, contact Kevin Gianotto by email at kevin@lbbc.org.