You are not alone.
A metastatic breast cancer diagnosis can be overwhelming. But no one needs to face it alone. In 2014, Lesley Glenn attended LBBC's Annual Conference for Women Living with Metastatic Breast Cancer after learning of her diagnosis. Lesley, a wife, mom, daughter, friend, artist, blogger and metastatic breast cancer “thriver” is an arts integration specialist with Students Pursuing Literacy through Art Together (SPLAT), an initiative that she created for the City of Long Beach’s Afterschool WRAP programs. This year, she is training to summit 14,500 feet on Mount Whitney for her 50th birthday. And, she “loves her life.” This is her story.
My name is Lesley Glenn, and I am a metastatic breast cancer “thriver.” I call myself a “thriver” instead of a “survivor” because I choose daily to flourish and prosper in my life despite cancer. I was first diagnosed with stage IIB ER/PR-positive, HER2-negative breast cancer in November 2012. What words are there to describe this life changing event? Jolted, rocked and rattled are just a few. However, I resolved in my mind that I could give 8 months of my life to treatment, because at that time, this is how long my doctors told me it would take to “beat” this. And I was in it for the fight.
It never crossed my mind that they might find other suspicious “spots” in my body, and when they did, I was still committed to my 8-month plan. However, chemo took its toll on me in the first 8 weeks of treatment, and I found myself spending a good portion of a month in the hospital, with a life-threatening case of sepsis. It was at this very low point that I knew something was not right, and after getting out of the hospital, I stopped all future chemo treatments and demanded a second opinion. Through the course of what I call serendipity, I was led to a team of amazing doctors at Kenneth Norris Cancer Center at USC, who offered a treatment plan that nurtured my whole person, body and soul, back to health. It was during this time that I was diagnosed with metastatic disease – meaning the breast cancer had spread to another area of my body, in my case the bones in my right shoulder. My 8-month plan was now erased with what could be a life-long condition. The learning curve got a little more confusing.
“Allow yourself to feel every emotion that comes your way, knowing that you are not alone in the journey and there are others who are going through the same thing.”
I no longer fit in with the women who had stages I-III of the disease, and sometimes felt like the “elephant in the room” when it came to sharing my experience with others whose breast cancer had not progressed to metastatic. While starting to make sense of my stage IV diagnosis, I found an online group called Club BC Mets, which was created specifically for women with metastatic breast cancer. As part of this group I began a dialogue with others who shared the same journey as me, most of whom were further along in their diagnosis, and had been thriving for years with metastatic disease. It was here that I learned about LBBC’s Annual Conference for Women Living with Metastatic Breast Cancer in Philadelphia. I read up on it and thought it might be good for me to be with other women, women who understood what I was experiencing.
At first, considering the costs involved I didn’t think I could attend. But then, I happened upon their travel grant and fee waiver program and decided to apply. LBBC has made the process to apply for this financial assistance so easy, and within just a couple weeks I was given both the travel grant and fee waiver. I went back to my online support group, asked if anyone else was attending and if so, if anyone was looking for a roommate. This was my introduction to Jill, who was the moderator of the group. She was also attending on a travel grant, and we decided to room together in Philadelphia for the conference.
I flew into Philadelphia very late the Friday night before the conference was to begin, excited, nervous and a little apprehensive. When I got to my room, Jill had already checked in. She graciously greeted me and we talked for a few hours before calling it a night. Saturday morning came, and we made our way downstairs for the start of the conference. It was at that moment as I entered the main conference area that I started to feel very overwhelmed. I was catapulted into a sea of women, who were all at different stages of metastatic disease. I remember taking a deep breath, and giving myself a mental pep talk…”You can do this, Lesley.” But then, seeing all the other women around me led to the following thought: Did any of us really want to be here? Because this is not the kind of conference one might typically say “HEY, I want to attend this!”
Yet, we were all there for a purpose – to know we were not alone. As the day unfolded, as providence would have it, I met several women who also felt the same way I did: overwhelmed and just a tad guilty. Guilty because we were a percentage of those with METS who are called oligometastatic, or those having 5 or less areas of metastatic disease. Having these women to dialogue with was an encouragement. However, what was more inspirational were the women who were 5, 10, 15 years in, who cheered us on and made us feel normal. As if there was or is a normal with cancer. My roommate Jill was literally my Godsend for the weekend. Every thought, every question, every time I wanted to hide, she gently pulled me up and helped me to make sense of all it. While I took away lots of meaningful information from the LBBC Mets Conference, it was the relationships that were forged that made the difference for me in my first year attending.
"You are not alone in the journey and there are others who are going through the same thing."
One year has gone by, and I have grown so much in my quest to thrive with mets. I believe that if I were to attend again this coming year, I would be more prepared as to what to expect, and what I would be looking to get out of the conference. If I were to encourage first timers, my best piece of advice is “Expect everything, expect nothing. Allow yourself to feel every emotion that comes your way, knowing that you are not alone in the journey and there are others who are going through the same thing. Don’t be afraid to ask questions and give yourself mini time-outs for when you feel overwhelmed. But mostly, know that this tribe of women are all on your side, willing and excited to cheer you on through your journey with mets and beyond.
This year, you can connect with other women at LBBC's Annual Conference for Women Living with Metastatic Breast Cancer. The event takes place April 11 – 12 at the Loews Philadelphia Hotel and travel grants and fee waivers are available for those who qualify. To learn more, visit LBBC.org or call (855) 807-6386.