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.

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Lesley Glenn

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!”

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Attendees at last year’s conference enjoy a moment of fun.

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.

8 thoughts on “You are not alone.

  1. I don’t have cancer but my best friend of 50+ years hast metastatic breast cancer to the bone .. She lives alone in Bradenton, Florida and although keeps an “upper ;Lip” she is all alone. I wish she couk
    d share her time with someone going through this too Right now she is worried about the cost of treatment and thinks sometime is it worth it.

    • Sandra, I live in Bradenton FL and am active in the BC community here. Quite a few in the group are living with metastatic disease and I’d’ be happy to introduce her to my friends.
      Warmly Marcia

  2. So gLad I found this. I have been battling stage IV metastatic breast cancer for two years now. I just decided to go off chemo. I have had 6 different chemo regimens and one after another they keep failing or putting me in the hospital from adverse effects. I am trying to find a clinical trial that shows promise. I am getting sicker fast. I wish there was more hope for me. I won’t be able to come to the conference this year because my husband is taking me on a Viking River Cruise which I am very happy about. That will be good medicine! What has frustrated me the most is that my Oncologist has not helped me at all to find a clinical trial. It is extremely difficult for someone like me to do this on my own. I badly need an advocate to help me with this and haven’t found one. Time is running out for me.

  3. Stage IV …it’s been 51/2 yrs. just started a clinical trial at sloan memorial
    In NYC. It’s only been 3 weeks..so far it’s good. Everyone needs to be in the best Cancer hospitals that are near to them & don’t give up. Everyday new trails are starting. We can live …we must continue to fight.

  4. I was diagnosed in August 2014. I was devastated. I had been going in yearly for mammograms and nothing was EVER found. I had been in & out of the emergency room for 3 years complaining about overwhelming back pain only to be told it was just muscle strain. Taken several CT scans and no on ever caught the problem until the right Dr. happened to be on duty and I heard him on the phone talking about the patient in emergency room #4. That was me!! After a short time another doctor came into my room and told me that my pain was due to stage 4 Metastatic breast cancer in my entire back and both hips!! I was devastated!! What if’s came to mind. If it had been caught earlier would this be different? Could the diagnosis be wrong? Why me? I had been doing it right!! NO LUMP was ever found! Will I have to have chemo and lose my hair? So far medications and lots of pain meds are making it tolerable. I’m hoping with my time that I have left on this earth there comes a cure for this. I would love to have attended this had I known about it sooner, but it starts tomorrow. Too late to make plans. Maybe next year.

    • I also have the same as you Mary Kay Reide
      They tell me there is nothing they can do but give me a bunch of meds and the chemo make me so sick it kept my white and red blood cells so low I was having to stay in the hospital every two weeks so they took me off of chemo and put me on a harmone pill that seems to be helping for now .My trouble is a I do is think abou it t dieing ! Wish I could get part this awful feeling and just learn to live one day at a tome! These ladys are so brave and I pray god will bless each one of you❤

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