Hi. This is me. (And other tales of vulnerability)

This week on the podcast we introduced our team, listened to some Just Gotta SHARE moments from our listeners and guests, and heard from a Charlotte, N.C. foundation that provides transportation and support to MBC and BC patients.  I also decided to lean in and get more vulnerable. 

In so many ways, this podcast was right in my comfort zone where I could highlight and champion what others do in the MBC community and the amazing podcast team I get to work with.   All my gushing and admiration for these people was muted, believe it or not.  I truly love and respect these fellow MBC compadres. The are definitely gold-plated members of the Best People/Worst Club.  My main goal has always been to amplify voices and initiatives that can make a difference to all of us living with MBC.  I also NEVER wanted to reinvent any wheel already rolling in our resource starved MBC world.  And so, I wanted everyone on the podcast team to truly reflect our community and I insist that everyone do work that they are passionate about while still managing to make the whole operation efficient, impactful and fun.  None of us have time to waste on anything that doesn’t make a difference in our MBC lives or that adds additional stress with things that don’t give us joy. I hope that you can hear all of that purpose in every episode we produce. 

I am incredibly proud of what we’ve accomplished over these past couple of months.  We did it with a shoe-string budget, our brilliant MBC folks, some wicked smart interns, and a willingness to dive headfirst into the deep end without floaties.  I am so grateful to SHARE Cancer Support  for giving us all the creative space we needed to make this happen while they’re always ready with a flotation device should we need one. 

Oh, yeah.  This whole post was supposed to be about vulnerability and my relationship with that.  Can you tell this is hard for me?  I will say that the making of this podcast and what we have produced so far, is a reflection of me and my values.  But that is not the whole story of course. 

While editing this latest podcast, I thought of leaving out my own audio intro of myself since I always worry about the balance of voices on the podcast and never want my voice to be dominant.  Let the guests and other co-hosts speak and I definitely try not to talk over anyone.  “Who wants to hear about me, anyway?” says that voice still renting space in my brain. But I did add in the story of my diagnoses - de novo MBC ER+HER2- in August, 2017 after what felt like a lifetime of mammograms and ultrasounds annually since age 35 and then 2 screenings within a month of each other just a short 6 months before learning I was stage 4.  I mentioned that it was truly a trauma for me, a shock to my core, as it is for all of us diagnosed with MBC but my shock was not in getting breast cancer but that it wasn’t at an earlier stage.  

As a member of the fourth generation of women on my maternal side to be diagnosed with hormone positive breast cancer, I always believed I would get it eventually, but since none of us still living had the BRCA gene,  I just expected I would get a lump around the time of menopause, and that it would be easily found either through self exams or my annual screenings.  My Nana had the dubious honor of being a case in a Canadian oncology journal back in 1973, given she went in for a mole removal and came out of surgery with no breast and the explanation that she likely had only 6 months to live.  She went on to have a mastectomy of her other breast, do a world tour since she was told she would die soon and then proceeded to live for another 30 years burying her surgeon, her best friends, her husband and many other family members.  Every female member of my family got breast cancer but none of us actually die from it.  Right?  

So exactly 3 years ago, I felt shock and profound shame that I had somehow missed something, that I had dropped the ball on this threat to my life and the person I thought I was.  I always had my shit together – but my diagnosis laid bare that lie.  As I reeled from those early days, I figured it was my fault for not paying the right amount of attention to the latest research, for not asking the right questions or even knowing what questions to ask.  This was definitely NOT my comfort zone.  In the language and research of the great Brene Brown, I have always been the “overfunctioner” in my family, finding my worth through solving everyone else’s problems, swooping into each family crisis (and there were many) from wherever I was in the world at the time.  I didn’t need anyone’s help with my own life.  Oh no, I had my life all figured out and I was the one who helped sort out yours.  So yes, I felt profound shame and terror when I was diagnosed.  I had let down my husband and precious kids somehow.  I know that this is all ridiculous intellectually but this deep shame stayed with me until the summer of 2019 when a progression generated a biopsy revealing I had mixed ductal and lobular qualities to my breast cancer.  It meant that my cancer had been a stealth player in my body for quite some time and that I should have had a regular MRIs to have a better shot at catching this thing earlier.  My sisters, who live in Canada, now get regular MRIs with their mammograms and ultrasounds since my diagnosis and our family history scared the socks off of the administrator making that approval.  It gives me great relief that they have a shot at a normal lifespan now.  

All that fear, shame and terror for what my diagnosis would do to my family, kept me from fully disclosing my situation for a few days from my husband, and  a few months from my kids and then a few more months more to my wider circle.  Those were weird days and I struggled with feeling so much anger (I am ashamed to admit this) towards my mother who never fully understood how complicated breast cancer was and therefore, in my fear addled brain, had somehow dropped the ball for me too.  I have moved on from this anger and have channeled these emotions into activity, advocacy, and trying to help others (back to my comfort zone, of course!) .  When I finally decided to leave my work as a clinical social worker for children, a late career change that I truly loved, I knew that I needed to take whatever time I had left and cram all the things I wanted to do for my kids and family while figuring out how I could make a difference with this devastating illness.  

I have many people to thank for helping me find my way during those hard days in late 2017 and early 2018.  I have mentioned some of these folks on the podcast this past month, notably Emily Garnett who really taught a master class in vulnerability through her blog and podcast.  And Rebecca Timlin-Scalera who you will hear more about next week when I speak with her husband Tom, the new Executive Director of The Cancer Couch Foundation.  And of course all the remarkable women of my support group in NYC – each of them showing me the way, teaching me, inspiring me and lifting me up.  Given that I did relatively well on my first line of treatment (Ibrance/Letrozole/Xgeva) I dismissed the idea of writing a blog for family and friends even when they asked since I didn’t think my life was interesting enough and my treatment was going well.  What would I write about, I asked?  That healthy breakfast I just ate? My exercise regime?  My concerns about hair loss?  It all felt so privileged and inconsequential to the stories I would read from others with MBC – and it wasn’t my comfort zone.  

And so I worked on projects like The Cancer Couch Foundations fundraising events and began doing support groups and delivering webinars for SHARE Cancer Support.  I worked hard and tried to make a difference but really didn’t put myself, my insecurities, my shame or my anger out there for the world to see.  I didn’t talk about all the pain that an MBC diagnosis can wreck upon a marriage (pro tip – the issues you may have had before your diagnosis, will often get worse and so seek counseling always!) And I didn’t really talk about my panic about my kids and what my early death will mean for them.  All too often, I just sucked it all up and tried to feel gratitude – I did get to see my kids graduate from high school and see one of my son’s truly fall in love.  Hell, I actually got to have kids. I am one of the lucky ones in this department.

So, what is different now?  Well I have lost far too many special friends to this terrible disease.  Their lives made my life richer and their deaths spur me to be bigger, braver and more vulnerable.  And what have I got to lose?  Not much since I‘m finally putting on my big girl vulnerability pants. I promise to come back to these pages with the truth of my life and the people making a difference in this crazy MBC world.

Thank you for listening to the podcast (I mean THANK YOU!) and being part of this very worst club with the best people.  You are my fuel and my life jacket.