Breastfeeding After Mastectomy: Katie Benson

Written By Robin Warshaw, Contributing Writer

20160525 Katie Benson 1.jpgAs a teenager, Katie Benson was told she would have trouble getting pregnant. She had endometriosis, a condition in which cells from the lining of the uterus travel and grow elsewhere. Endometriosis causes pain, cramping and, often, infertility.

“The doctor told me if I didn’t get pregnant by 30, it wouldn’t happen,” she says.

Fast-forward to Katie at age 31, living in Winterville, North Carolina. She and her husband had been trying for a pregnancy, with no success.

Then a pain in her breast sent Katie to the doctor. Testing showed she had ductal carcinoma in situ, or DCIS, in her left breast. Although noninvasive, DCIS can become invasive breast cancer.

The DCIS grew from 3 centimeters at diagnosis to 6 centimeters when she had surgery three weeks later. Her doctor recommended a single mastectomy due to the size and location of the tumor. She had no other treatment.

Afterwards, her first question was, “Am I cleared to get pregnant?” Her surgeon and oncologist told her to go for it.

Pregnancy Challenges

Four months later, Katie was pregnant. “When I actually saw the little home test [showing she was pregnant], it was such a shock!” she says.

The next shock was even greater. At her first ultrasound, she looked at the screen and saw two rib cages. She was having twins.

Everything went smoothly until week 34 of the usual 40-week pregnancy. Lab tests showed Katie had preeclampsia, a complication of pregnancy that causes high blood pressure. Often, women with preeclampsia are forced to deliver the baby early. She also had HELLP syndrome, a dangerous condition in pregnancy that can cause stroke and death.

Katie was immediately hospitalized. When she realized the early delivery meant the babies would be born on the one-year anniversary of her DCIS diagnosis, she begged doctors to delay. “I was very upset,” she says. “I thought they [the twins] would be marked by cancer.”

The birth was not delayed and went safely for mother and infants, a girl and boy delivered by Caesarean section. As they recovered in the hospital, there was much more to think about. Katie wanted to breastfeed. But because of her mastectomy, she faced another challenge: Two babies. One breast.

Even women with two breasts find it challenging to nurse twins. Each baby needs to be fed from 7 to 12 times a day, depending on age, which can be hard on the mother’s breasts. Her one breast was going to have to work hard.

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Adapting to Breastfeeding

Before she knew she was having twins, Katie worried about how to breastfeed with only one breast. In general, women with two breasts alternate sides during feedings, to reduce wear-and-tear on the nipples and help both breasts to keep producing milk.

Katie’s concern multiplied when she learned there would be two babies. Then a good friend reassured her. No one could expect her to breastfeed two babies perfectly. “Just do the best you can,” her friend said. Those words comforted Katie.

She rented a hospital-grade pump to get as much milk from her one breast as possible. The babies started on three-quarters breast milk and one-quarter formula.

Even with the better pump it wasn’t easy. “For one thing, it hurt like nothing else because everything had to come from that nipple,” Katie says. She struggled with the awkwardness of being right-handed and feeding only from the right breast. Because she and her husband worked opposite shifts, she often had one baby at her breast and one in her lap, with a bottle.

She went back to work when the babies were 7 weeks old, but pumped there as well as at home. She was determined to give the babies the health benefits of her breast milk, in part because she felt guilty about them having been born early. Breastfeeding, she says, was “something I [could] provide for them.’”

Sorting It Out

Katie, now 34, remembers the stress she felt about breastfeeding and how she accepted what was possible. Instead of aiming for the “exclusively breastfeeding” standard that many women feel pressured to achieve, Katie told people she was “inclusively breastfeeding.” That phrase, to her, avoided “all the strife” that nursing can pose for new moms. Even for those with two breasts.

“Breastfeeding is so rocked with all these emotions. The nice thing about breastfeeding after mastectomy is…I wanted to give it my best, but [knew], no matter what, I’m gonna have to do formula,” she says.

The twins are now 2 years old and thriving. As time passed, Katie began to see the timing of their birth and her 1-year “cancerversary” not as a bad sign, but as a way of showing things could become better.

“It was incredible that I had never gotten pregnant before, but that after this diagnosis I did,” she says. “I prayed for a miracle and I got two.”

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.

The Bridge

Karyn Williams participated in Writing the Journey, our writing workshop series for people affected by breast cancer. “The Bridge” is a poem she wrote for the workshop.

image1

I crossed the bridge,
Into a new land.
The technicians said to me,
“We need to do this again,
Sorry.”
Stomach lurches,
Mouth goes dry,
Fear.

So, the Facts
And then, the Plan.
And off we go over the bridge,
Down the rabbit hole,
Into For Ever Land,
Cancerland.
Where nothing is the same.

Chemo, radiation,
medicines and machines,
Hair loss, fatigue,
Blood tests and scans,
Through the maze of alternatives.
Never sure,
No cure,
This is me
Now and for ever.
“I can’t go back to yesterday”, said Alice,
“Because I was a different person then.*

*from Alice in Wonderland, by Robert Louis Stevenson


Karyn Williams, 59, is a mother of four children and has two grandchildren (and another on the way). She lives in Australia with her loving husband. Karyn was diagnosed with early-stage breast cancer in 2008. In 2014, she learned she had metastatic breast cancer in her lungs, liver, brain and spine. Karyn has been pleased to find support through online communities like those offered through Living Beyond Breast Cancer.

Reaching & Raising with Family

3My name is Diane Storer-Price. I am a 49-year-old single mom of two amazing daughters; Sam who is 21 and Haley who is 11. On December 31, 2014, I was diagnosed with Stage IA ductal carcinoma in situ breast cancer. It was found through my annual mammogram that I started getting many years before since my maternal aunt also had breast cancer. I had a lumpectomy and lymph node removal in February 2015 and was set to start radiation after I healed.

However, my radiation oncologist suggested I have a breast MRI first. Two MRIs and biopsies later, I learned that there was a large area of abnormal cells that didn’t allow clear margins to be achieved via a lumpectomy. After much thought, I decided to have a partial mastectomy with a reduction and lift bilaterally in May 2015. The tissue removed contained many other foci but I chose to receive radiation rather than chemotherapy. I finished 30 rounds of radiation in late September 2015, and I am currently on Tamoxifen.

Just after being diagnosed, I started to look online for resources and breast cancer organizations to support. After some research, I chose to support Living Beyond Breast Cancer because 85 cents of every dollar they raise goes directly to programs and services for those affected by breast cancer.

btbteamMy sister Nina was always by my side from the beginning of this journey and after being diagnosed, she reassured me that we would ‘beat this b*tch’ … hence the name of our Reach & Raise team. She is the chief operating officer of Meyer Capital Group, which is a sponsor of Living Beyond Breast Cancer. She and the team at Meyer knew of the amazing people at LBBC and its programs and services aimed at providing information and support.

As soon as I found out about LBBC’s Reach & Raise event I signed right up and started a team. I can’t express how wonderful the day and the whole experience was. There was a certain beautiful feeling and calm that was evident to everyone there. The yoga was certainly challenging but it was amazing to look around and see so many people doing something so healthy while also raising funds that are used for the right reasons!

I’ll be at the event once again this year and hope you can join me.

Don’t be Freaked out About Fundraising!

Ok, so you’ve signed up for Living Beyond Breast Cancer’s Reach and Raise event being held on May 15 on the steps of the Philadelphia Museum of Art. You went online, registered, and then here it comes, Time to Start Fundraising!

Let me share some fundraising tips from what my home studio, Pink Lotus Yoga in Swedesboro New Jersey, is doing. Currently, we’re promoting a donation-based class series. The first class was a chanting, meditation and gentle/restorative yoga class. We then offered a “Move to the Groove,” where we practiced an energizing vinyasa accompanied by acoustic guitar. The third class offered was a self-care/compassion workshop lead by an art therapist.

pink.lotus.teamWe also sent an email asking for assistance to create raffle baskets. Our powerful community responded with amazing baskets filled with products that we displayed in the studio. People loved having the opportunity to purchase tickets for a chance to win.

How can you create something equally inspiring resulting in generous donations? It’s really not that difficult, you just have to be mindful.

Pink Lotus Yoga is an amazing community filled with beautiful souls containing a plethora of talent and resources. This was my starting point. I reflected on what was available to me. We have a lovely instructor who has a beautiful voice. She plays guitar and has a network of friends who practice kirtan. They all came together to lead a restorative yoga class with several other instructors specializing in mediation and restorative yoga.

Our studio also has an instructor whose husband plays guitar. She teamed up with a dynamic vinyasa instructor to create “Move to the Groove.” Lastly, one of our clients is an art therapist. We simply asked her if she would like to offer her time, talent and compassion to our studio. This was a no-brainer for her – absolutely! Our studio set a price for these classes and our clients were more than willing to generously give and at the same time participate in a mindful, purposefully planned class.

Tips on becoming mindfully and creatively inspired:

  • Reflect on the resources that are available to you. Use these resources to your advantage. Brainstorm with talented friends/studio owners and instructors.
  • Don’t hesitate to ask. Come right out and say, “Is there someone willing to donate his/her time, talent and energy to hold a donation based class?”
  • Think! Can you do something a little extra to entice people while they are having fun being blissed out with an open wallet? You can start with a basket raffle.
  • Know the source that you are fundraising for. Share your experience with Living Beyond Breast Cancer, its amazing yoga event and valuable resources benefitting those affected by breast cancer.

Now you have nothing to be freaked out about, right? I hope I got your wheels turning and your creative juices flowing on ways you can ignite your network and start fundraising. I hope to see you on the steps May 15!

Written by Peggy K. Dyer, Reach and Raise Team Captain for Pink Lotus Content Warriors.

Confessions of a Non-Yogini: Celebrating 15 Years of Reach & Raise

team.dreamsLong-time Living Beyond Breast Cancer support and Reach and Raise: Philadelphia Team Captain Dorel Shanon writes about what the annual event means to her.

The very first year of Yoga on the Steps it poured in Philadelphia – the only time in 15 years the event had to be rescheduled. It had been a long year for me: three surgeries, several months of chemo, and radiation still ahead. I hadn’t taken a yoga class in many, many years and wasn’t sure I would be able to move my body in any way resembling event co-founder and instructor Jennifer Schelter’s poses. What do I remember most about that first gathering? The deep sense of peace, connection, well-being and hope I left with that day.

I’ve been to every Reach and Raise since then (except once, when I was forced to stay home with a fever). Some years it’s the only yoga class I take; others it’s one of many. For the past 8 of those 15 years, I’m there as co-captain of Team Dreams with my daughter, Ari. She launched Team Dreams as part of her Bat Mitzvah project, to give back to an organization that was my lifeline during my year of treatment and beyond. We’re joined by about 15 to 30 friends and family members each year and most years, Ari, who’s now in college, still comes to support me and the team, as do her friends who are in town. Each year I am beyond grateful to experience one more morning of yoga on the steps of the Philadelphia Art Museum, surrounded by friends, family and – now- thousands of strangers who are part of my community of those touched by breast cancer.

team.dreams2Enough time has gone by that I don’t know answers to questions like: How long did it take your hair to grow back? Or, Did you have a hard time with radiation? But I never forget the amazing community of people who stood by and supported me through that long year, friends who cooked and drove my children everywhere, my husband who had faith even when I didn’t, doctors who – with compassion and caring – guided me through this parallel universe of cancer, strangers who shared scars and stories of their own treatment experiences…and the staff and volunteers at LBBC, who made sure I never felt alone on my journey.

I also never forget the feeling of joy, connection, gratitude and peace I experience every single year on the steps of the Philadelphia Art Museum as Jennifer and countless other yoga instructors guide us through a loving and hope-filled morning. A friend who came to Reach and Raise for the first time told me that she knew she was contributing to a cause she believed in by coming but hadn’t realized how much she’d be getting herself. She called the morning “a gift to herself,” something that has stuck with me ever since.

Being at Reach and Raise is a moment to pause and experience the gratitude I feel for LBBC, for this amazing community, for my incredible team of health care providers, for my family and friends, and most of all, for the life I’ve been able to live so fully and deeply this past 15 years. I cherish that moment and look forward to many more years of joining others on the steps of the Philadelphia Art Museum for this inspiring and life-affirming morning.

I hope to see you on May 15. You can join my team, start your own or make a donation to support Living  Beyond Breast Cancer’s mission of connecting people with trusted breast cancer information and a community of support.

6 Tips for Reaching Your Team Fundraising Goal

Does your Reach & Raise team need some fresh ideas for fundraising this year? Team Bee-Yond Breast Cancer has some exciting ways to expand and maximize your efforts.

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Lavender eye pillows, bracelets and necklaces that we sold.

 

1. DIY: Get out your glue gun, beads, sewing machine, or cookie sheets and get creative. Our team fundraising has been energized this year with several handmade items being sold by team members. Some examples are jewelry, homemade cookies and lavender eye pillows. Ask your yoga studio if you could sell the items in the studio, and advertise your items on social media.

2. Independent Consultants: If you are an independent consultant or have a friend who might be willing to get involved in a good cause, the options for in-home or online parties are almost endless. Once you have a contact, ask if they would be willing to donate a portion of their earnings from a party. Then, host a jewelry, candle, bag, or make-up party with a predetermined percentage of the sales to be donated.

3. Dine for Dollars: Many local and chain restaurants are willing to hold fundraising nights. Invite the team as well as their friends, families and coworkers to enjoy a relaxing night out to raise money for LBBC—and no dirty dishes!

4. Barefoot Ball: The Barefoot Ball is our team’s favorite fundraiser. It’s a donation-based yoga class. The team enjoys a night out as a community. It’s also a great night for new faces to come out to give yoga a try. It offers an opportunity for mini-fundraisers the night of the event (basket auctions or sales of DIY items). Best of all, donations from the evening go directly to the team total.

team.beyond5. Spread the Word: Share the link to your team or personal page on social media to ask for donations from online supporters. Talk about the vision and mission of LBBC. Send out some personalized emails asking for contributions. Place a jar in the break room at work with some information about how the funds are used to support those with breast cancer.

6. Grow Your Team: As your team grows, the potential to reach or exceed you goal increases. Encourage team members to recruit friends to join the team. Promote your team as family-friendly (children ages 5-18 can register for only $10).

These are just a few ideas to get your Reach and Raise team moving in the right direction–toward achieving its goal. What other ways has your team found to successfully reach its goal?

Written by: Laurie McGuire, member of Team Bee-Yond Breast Cancer and Instructor at Bee Inspired Yoga.

Healing With Yoga: One Step at a Time

headshot.deb.copitWe’re marking the 15th anniversary of Living Beyond Breast Cancer’s Reach & Raise on May 15 this year atop the steps of the Philadelphia Museum of Art. We asked one of our biggest supporters Debra Copit, MD, director of breast imaging for Einstein Healthcare Network, about her experience with one of the largest yoga events in the area.

How did you get involved with Living Beyond Breast Cancer?
I got involved with Living Beyond Breast Cancer over 20 years ago when I came back from completing my residency in Dallas. I wanted to get involved in a local organization and LBBC is so dedicated to what happens after diagnosis. They do something unique and they do it really well. As a radiologist, I often see the before and after but LBBC helps a lot of women throughout their diagnosis.

Your relationship with LBBC got even more personal for you in 2011. Can you share?
I was diagnosed with breast cancer five years ago. I caught it early. I went through radiation and took Tamoxifen for five years. LBBC does so much for others in my situation – especially for those who don’t have the support around them like I did.

Will you be participating in our Reach & Raise yoga event in Philadelphia on May 15?
Yes! I have participated at least 10 times. I’m excited to mark the event’s 15th anniversary this year.

What does the event mean to you?
Over the years the event has taken on a different meaning. Prior to my diagnosis it was a day of connecting to other women and a celebration to honor people who were diagnosed, fighting the disease and people who are no longer with us.

It is also a morning of beauty and calmness. Just being there with all those people in the city where I grew up is magical.

After my diagnosis the event became even more of a celebration. It’s a milestone and a very positive, uplifting morning.

You’re this year’s guest speaker at Reach & Raise. What do you want to impart on the thousands of participants?
I think the most important thing I want people to realize is to relax, remember why we’re all there and take in the humanity that surrounds the disease at such an important event; enjoy the moment and celebration.Yoga on the Steps - 2015 (Joe Longo High Res) (221)

Do you practice yoga on a regular basis?
Yes. It’s definitely a source of calmness in my life. I really do find that I release a lot of stress and tension both when I’m doing yoga and afterward. While yoga is good for your body I do it mostly for the mental benefits.

Your employer, Einstein Healthcare Network, is this year’s presenting sponsor of Reach & Raise. How does that make you feel?
I feel extremely proud and grateful that they understand the importance of this event and the work that LBBC does. I’ve been at Einstein for almost 24 years. To have the two organizations that are such a big part of my life partner together is wonderful.

What would you say to those thinking of participating in Reach & Raise for the first time?
Don’t miss it! You’ll be more than pleasantly surprised to see how it makes you feel and it will be a great memory for years to come. It’s an all-levels class so don’t be intimidated if you’ve never done yoga.

Plus, the money raised at this event goes directly to LBBC’s programs and services that help so many people affected by breast cancer. It’s absolutely yoga for a reason!

How have you benefited personally from LBBC’s programs and services?
I really knew that if I had a question or needed support that I could go to LBBC. The staff is so caring and supportive.

As a radiologist I am often the person who has to tell someone they have breast cancer. In that regard LBBC has been a tremendous resource for me. I am able to recommend an organization that I trust and know can help those affected by breast cancer. That means a lot to me.

You can hear Deb speak (and probably see her Downward Dog) at Living Beyond Breast Cancer’s Reach & Raise on Sunday, May 15 on the steps of the Philadelphia Museum of Art. To register or to make a donation, visit philly.reachandraise.org.