Tuesday, January 20, 2015

In the Club (the one nobody wants to join)

Before Christmas, we managed to squeeze in a dinner party with friends--my best friends from college and their husbands.

One of these friends is Beth, who is now finished with her chemo treatments and recovering like a boss from a double mastectomy, to be followed next month by a hysterectomy (without hormone follow-up treatment, because hormones could feed her cancer).

Beth didn't wear her wig to dinner and her bald head highlighted how gorgeous she is (seriously, who looks that good bald? Not even The Rock.) and also how fragile she seems now.

Triple-negative breast cancer with the BRCA1 gene mutation is not messing around, and Beth talked candidly about her fears about what will be determined by the tissue pathology after her mastectomy (20% of women with this cancer find that there are no cancer cells remaining in their breast tissue after chemo... the other 80% may find a range of different amounts/tumors, which vary widely in terms of seriousness). After falling in the small side of statistics with so many aspects of breast cancer, Beth was hoping she ends up there again, but this time with good news. We know now that she did get that good news after her biopsy, but we are still not totally sure what that means in terms of potential recurrence.

She also talked at dinner about the possibility that the cancer could return elsewhere in her body, and what that might mean--it would be considered advanced stage cancer and she understood that would mean palliative care. As in make her comfortable for the time she has left.

My eyes filled up with tears when she said that because holy shit. It's one thing to think about your death in the abstract. It's another thing to sit across the table from one of your best friends, who happens to be a week older than you are, and see her grappling with the idea of her death in real, concrete terms.

She told the story of meeting another woman who came into the chemo treatment room for the first time, clutching her big binder of breast cancer information and looking terrified. She was introduced to Beth and they discovered they are close to the same age, both have two kids, and both have the same kind of cancer (also, crazy enough, they have the same first name).

At this point in her story, Beth turned to me and her eyes filled up with tears. She said that she understands now the friendships that I made with other mothers who had lost babies because meeting this girl with the same diagnosis was the first time since she learned she had cancer that she didn't feel completely alone.

That's not to diminish the support of her husband and her family and her friends--I know Beth has been overwhelmed with the love and kindness that she has received. Cards and texts and phone calls and meals and gifts--those matter, and are greatly appreciated.

But there is NOTHING like connecting with someone else who is in the trenches.

As much as I love my friends who have stuck by me, my connection with them just isn't quite the same. We have a shared history and private jokes and great memories and years of friendship that link us. But still, they have no idea what it's like to go through what is possibly the defining experience of my life. They don't know what it's like to lose a baby, to have a rainbow baby, to negotiate gratitude and grief in virtually every waking moment.

To their credit, they understand that it's important to call or text on Eliza's birthday, they know that I love her and miss her. But unless you've walked this path, I think it's impossible to fully understand what it's like to love a baby who isn't here, to give birth to a child you don't get to take home, to be bowled over with the guilt and shock and horror, and then to get up and try to carry on.

There's a kind of shorthand when it comes to that stuff that I share only with other baby-loss mamas (or BLMs). We know that complaints about our living kids are more than overwhelmed by sheer giddy gratitude that they are here and alive. We know how much it means when someone is saying our child's name or seeing something that reminds them of our baby, even years later. We know that all the typical parenting guilt and joy is further complicated by our experience of loss. And we don't have to try to explain or justify or articulate any of that. We just know. We just get it. In a way that no one could who hasn't lived it.

I have a pretty vivid imagination, but I don't know what it's like to be scared of dying the way Beth has been scared. Unless you've gotten a cancer diagnosis, you don't really know what it's like to endure treatments that make your bones hurt and your hair fall out. I can try to put myself in her shoes, and I can cry tears of genuine sympathy, but my empathy will always fall a little bit short because, for now anyway, what's hypothetical for me is reality for her.

One of the hardest things about grief (and, probably, cancer) is the way it feels isolating. Even when we're surrounded by people who want to help or people who want to make us feel better, those people get to go home and kiss their (living) kids and go to sleep feeling reasonably confident they are going to live to see those kids grow up.

I knew other people who had lost babies, but I hadn't come to close to understanding what that experience as actually like. And when Eliza died, I felt so alone. I felt freakishly singled out as a horror story among my friends and acquaintances. I felt like an object of pity, made twisted and ugly by my grief.

And then I wrote my story on the internet and I heard back the two words I had been longing to hear, without even realizing it.

Not, "I'm sorry," but, "Me too."

They say misery loves company, but the truth is that grief needs companionship. Women who walked the path of baby loss in 2010 and 2011 became my tribe, my support group, my friends. Eliza's loss was unbearable until I found other mamas who were surviving the same loss. Members of the club nobody wants to join--descriptions of both cancer and babyloss.

When I get e-mails from women (and sometimes men) who have found my blog, I always say, "I'm so glad you found my blog, and I'm so sorry you were looking for it."

Not because this blog has any answers, but because at least it is proof that you are not alone in this.

I think we can survive the worst of circumstances, as long as we don't have to do all by ourselves.

Grief is too big a burden to bear alone. We need old friends from before to grieve with us and, eventually, to remind us of who we were. And we need comrades in arms to remind us that we are not alone in this new (shitty) reality.

So I guess the lesson here is that whatever you're going through, find Your People. Form your tribe. It doesn't happen overnight--my group of BLM friends came together over two years of blogging and e-mailing. But keep searching. We may be on a very lonely planet, but we are not alone.


  1. I'm terribly sorry about your friend. All very true about finding your tribe - couldn't have made it throughout my first year without mine. I also think that losing Sam made me more empathetic to others struggling for whatever the reason may be - even those with cancer. I cannot relate entirely (not yet anyway, and if I'm lucky, never) but I'm comfortable with the uncomfortable now in a way I wasn't before.

    I sincerely hope for the best for friend. Sending you & her much love.

  2. Beautiful. I hate the context of what inspired you to write this post but eloquently and breathtakingly beautiful

  3. I'm crying. Of course, ha! Love you guys SO much and could not do this without you all!

  4. I'm so glad you're one of my people. Just wish you weren't.

    Also, Go Beth!

  5. Damn.
    This is one of my favorite posts. Ever.
    Being a BLM and coming closer than I'd like to cancer ourselves recently...
    You nailed this and completely honored Beth and I don't want to ruin what is akin to angels singing in the shining truth of that post by saying more.
    You're gifted as hell with the written word, and am so grateful to call you a friend.

  6. So very sad. Prayers to your friend.

  7. My heart aches for her. Although it is different, I can empathize. When I was 25, I found out I needed open heart surgery. I was acutely fearful of dying on the table, like my uncle had died during open heart surgery 30 years earlier when he was two years younger than I was at the time. I went to a counselor. I tried to wrap my mind around the real possibility of my own death. I even tried to accept it. Thankfully, I survived but the effects of that time (both physical as well as mental) still linger, like it's own special form of PTSD. In addition to continued counseling, over time, I have found my people - I actively participate in and fund raise for the Congenital Heart Walk in my city each year. My heart goes out to your friend. I hope she continues to be on the small side of statistics in a good way and I pray for strength and peace for her and her family as they continue to forge forward together on this uphill battle. Thank you for sharing.

  8. Brooke this post broke my heart in a million pieces and then put it back together again. You were one of the first "me, too" beacons that I found in the dark times, and I am thankful every day for our tribe of beautiful broken loving BLMs. Like you, I remain thankful for old friends too - they remind me who I used to be, and we have so much shared history - but a whole universe of experience now stands between us. Your friend Beth sounds amazing and strong and I hate that she is going through the horrors of cancer. May she continue to find her tribe to get her through the dark times.

  9. This is all so true. I'm so happy you found my blog... I'm so sorry you were looking for it. TRUTH.

    I love that Beth came to dinner. I might still be curled up on the couch in fetal position. I'm glad she didn't wear a wig or hat. Life is dirty, but people are beautiful. It definitely stops you in your tracks when the big C comes out and hurts someone close to you, let alone close in age. I'm happy Beth has you, but I am happier to know she found someone in the trenches that is living what she has been through. There's just nothing like it. Like you said, not just "I'm sorry", but "Me too" for sure.

    Oh man. Heavy.

  10. Big hugs and positive energy for Beth to be cancer free! And lots of love to you, Eliza's wonderful mom. I am so thankful to have found, and be found, by my tribe. xoxo

  11. It became impossible for me to continue reading this post until I blinked the heavy tears from my eyes. Your friend Beth. Her friend Beth. I'm so glad they have each other, the same way I am SO SO thankful I found you and the others.

    What you've written here is BEAUTIFUL and I'm pretty sure, "find your tribe" is exactly what my recommendation to the baby loss are… Find people, on your timeline (or close to it), who know exactly what those darkest of dark days feel like.. Find those people and hold their hands while you travel through the ups and downs.

    <3 Love you.

  12. I'm struck by the common thread of clubs like these. It's like part of the admission to them is the fact that you no longer take something for granted that used to seem ordinary, natural, normal. I know you feel that way, and I ache for Beth as she grapples with feeling it too.

    I think of her daily, and hate cancer to the very core of my being, just as I hate the fact that you don't have Eliza with you today.

  13. What a good post. I'm so sad for your friend Beth and I am sad for all of us BLMs that we are united in this horrible experience. You are so right about friendships being different and that the shared experience really is required for true understanding. Thanks for articulating what I've felt as per usual!

  14. I cried through this entire post. I love your words. No matter what someone is going through when they come to me, I always recommend finding someone who is going through something similar. There is a comfort there that cannot come from anywhere else. Sending lots of love to Beth♥

  15. It took me a few days to get through this post. Mainly because I had to read it again and again to let it stay with me. Time to sit and structure proper comments and whole hearted responses escape me these days. But I read this and I thought it was one of the best put posts I've come across in a long time. You hit the nail on the head. You always do. But you are so right. Everything here rings so true.

    Only the ones who can say "me too" are the ones I've felt truly saved by.

    Love to Beth. I love what brandy said about her not wearing her wig. Life is dirty and people are beautiful. And strong. It shouldn't have to be prettied up for anyone else's comfort. Xox

    Thankful for you ... But so wish we didn't have reason to know each other. <\3