Hear My Voice: Relationships, Faith and Being Declared NED

Serenity KislingSerenity Kisling blogs about navigating her relationships, her strong faith and being declared no evidence of disease.

 

As I write, it’s the first day of 2014’s Breast Cancer Awareness Month. I’ll be honest: now that I’ve been declared NED (no evidence of disease), I don’t want to watch the Today show’s #PinkPower, or think about cancer. I am so traumatized by the last 7 years, and wondering if I was going to see my son’s third, fourth, fifth, sixth and seventh birthdays.

However, I want to reflect on my journey. Despite what I have experienced with my health and my family, I got through this journey with metastatic breast cancer through faith, laughter and by living my life.

First, let me say that the breast cancer journey sucks, no matter if you are lesbian or straight. I was initially diagnosed with stage III ER/PR-positive breast cancer in 2008, at age 35. I had a 2-year-old son and a different partner at the time. At that point, my relationship with my partner was rocky, and she was not very emotionally supportive while I had breast cancer. She had no idea what I was going through: being bald from chemo, becoming so sick because of the chemo that I could not drink or eat anything, ending up neutropenic, dehydrated and in the hospital for a week and developing pneumonia.

In 2009, my then-partner and I celebrated when oncologists declared me in remission. We thought life would go back to normal and not the “new normal” commonly associated with post-treatment — just “normal,” period. It seemed like I was better after finishing treatment. I even went back to my hardcore workouts. But then I started feeling fatigue, and with that came insomnia. Life became miserable for various reasons, and I decided to divorce my partner. It was the hardest decision I have had to make thus far in my life. Through all of this, maintaining my positivity (though hard at times) and my faith got me through this major life change.

Something that made me depressed was that the oncologist who declared I was in remission did not discuss preserving my fertility before I proceeded with chemotherapy, and now it’s too late. I had been in survival mode, I had a beautiful son, and having another child hadn’t crossed my mind. I wish now I had frozen my eggs. I would have loved for my wife to carry my child. Even though I live with this regret, I have come to realize that it may not have been meant to be, and I must accept this and cherish my one beautiful son. Continue reading

Reflecting on the “Let’s Talk About It” Series Video Shoot

20140912LTAIbehindscenesOur Young Women’s Initiative recently launched two videos as part of the “Let’s Talk About It” Video Series. Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative, wrote this post about the day of the shoot and working with the young women and video crew who helped create the additions to this series.

I always have a hard time sleeping the night before running the video shoot for the Young Women’s Initiative Let’s Talk About It Video Series. Yes, since I’m managing the project my brain is swimming with logistics, which does make it hard to relax. But I mainly can’t sleep because I’m so excited. I’ve quickly learned that these video shoots are one of my favorite work days of the year. I’m excited to meet the amazing young women from across the nation who have agreed to be a part of our video project and want to share their experience to help other young women cope with breast cancer.

Each year, the video interview participants seem to have no hesitations about arriving, meeting the group of strangers running the video shoot and then quickly launching into in-depth conversations about subjects that rarely get talked about openly.

This year’s April video shoot was no different. Assembly, the video production team, arrived with a 10-member crew and quickly set up the shoot in a small hotel room. Together, we spent the next 12 hours filming. Eight young women and three healthcare providers participated in the video shoot. Some of the young women were nervous when they arrived but relaxed once the interview started. Others had fun learning new make-up tricks from our stylist. Continue reading

It’s About You: Lynn Folkman’s Story

emailHeader760x1604_BlogResizeAt this year’s annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, we’re not just providing you with the unique information you seek; we’re offering you the chance to connect with others and learn that you’re not alone.  While being treated for breast cancer, Lynn Folkman went to her first-ever LBBC fall conference in 2009. She blogs about that day and the importance of creating the conference experience you want. Lucky for us, Lynn joined the team at Living Beyond Breast Cancer in 2012 as our Community Engagement Manager.

Lynn Folkman LBBC Fall ConferenceIt was fall 2009 – I had just completed chemotherapy, radiation therapy and was a few months into my year of taking trastuzumab (Herceptin) and I was exhausted. I found out about the LBBC Annual Fall Conference through one of my support groups and the thought of attending alone was too overwhelming for me, so I agreed to attend with a friend I met during treatment.

The conference that year was held at the Pennsylvania Convention Center. I was a bit nervous about attending, as I had previously worked at the Convention Center and still knew quite a few people there, and they did not know that I had breast cancer. As well, the tables were turned; I was a meeting planner and instead of producing the event, I was experiencing the conference as an attendee.

I was in an emotionally raw and vulnerable state. I was at the point in my treatment where I often wondered if or when I would ever feel like myself again. I was tired of hearing the comment, “You look really great!” I longed for a day where I could be invisible and no one would know that I had breast cancer. However, I was still mostly bald and there was no masking what I was currently experiencing. I was apprehensive about having to endure glances from people who knew me, which would be mixed with a combination of sympathy and trepidation.  They were used to the vivacious energetic Lynn, not the exhausted Lynn.  How could I possibly fake it when I did not even have the energy to do so?

A few things occurred that day which continue to deeply comfort my mind and spirit and reinforce the special place in my heart for the LBBC Fall Conference. Since it was my first time attending, I had no idea what to expect. The day began with the opening session, the speaker welcomed the group and then asked people how far out they were from the time of their diagnosis. When your year was called, you were instructed to raise your hand. One year and under, my hand went up. I don’t remember the exact breakdown, but it went something like this: 1-5 years, 5-10 years, 10-15 years, more than 15 years and so on.  What I do remember is being overwhelmed as I heard cheers and looked around the room and saw so many raised hands and proudly smiling faces.   Continue reading

Do You Have Any Idea How Beautiful You Are?

Musser_Barbara_2014Breast cancer can drum up many complex emotions and thoughts for those who are newly diagnosed, especially around body image. Barbara Musser, CEO and founder of Sexy After Cancer, writes about the importance of defining your own beauty and invites you to learn how to do this by joining us for our free webinar at noon ET/11 a.m. CT on Tuesday, May 20, held in partnership with Susan G. Komen of Greater Kansas City

Dealing with a breast cancer diagnosis and treatment is a big challenge that goes on for quite a while. On top of that, it’s easy to feel like less of a woman, especially with altered or removed breasts, instant menopause resulting from chemo or hormonal therapies and other physical changes that can happen.  There’s not a lot of conversation about our body image, self-esteem and self-love and our intimate and sexual lives. And yet these are the subjects that have the most to do with the quality of our lives.

It’s the elephant in the room that no one mentions. Partly it’s because these aren’t easy topics to broach and partly because we don’t know to ask about them if we don’t know what to expect. You may have experienced this spiral. Continue reading