Keeping it Real

I had a great deal of emotional luxury going into this.

Annie too came at this feeling like she had options. Many BRCA-positive women do not–their mastectomy’s required due to a cancer diagnosis. There is no other option. There is no waiting until the right time. There is no time to prepare emotionally and mentally. It just happens. It’s the likelihood of this rather shitty situation that propelled Annie to set the stage for her surgery early rather than taking a “wait and see” approach with a possibly ticking time bomb in her body. That tenacity’s one of the many things I love about her.

Almost ten years ago we attended the FORCE conference to meet other BRCA-positive people (mostly women, but several men) and learn about latest treatments and procedures. It amazed us how quickly we (a) learned a new vernacular and (b) gained a host of new friends almost immediately. It seemed remarkable how our newfound friends could speak so easily and openly about very, very intimate details of their lives.

At the time, the idea of an oophorectomy (removal of a woman’s ovaries), let alone a prophylactic mastectomy, was but an idea in my head—more an intellectual exercise in learning, questioning, and weighing options than feeling like real life.

It felt a little real once we decided not to seek additional fertility treatments, and Annie took the first step—having an oophorectomy to eliminate her chances of ovarian cancer, even though it meant going into immediate menopause, along with other possible maladies, while still in her early 40’s.

Yet even then, talk of the mastectomy was simply planning for “some day soon”. Given the seriousness of the surgery and recovery time, it wasn’t a decision she took lightly. Being in the middle of wedding season, for example, was a non-starter as she’s still limited to light physically activity, thanks in part to the reconstruction process. Our wonderful assistant Karen may have served as her occasional pack mule, but nothing like this. So the decision got delayed. And then we moved to Colorado. And it got delayed some more until we achieved the magical combination of decent health insurance, an experienced medical team, and the last of our weddings.

It felt a little more real when she sent me links to mastectomy blogs.

It felt a little more real when she began ordering things like drain holders you can wear in the shower, a product only a mastectomy recipient would need.

It felt a little more real when she set February 8 for her surgery.

It felt a little more real when the nurses at University of Colorado Hospital wheeled her away from me, after one last kiss (for Annie, not the nurses).

It felt a little more real during the six-hours of waiting to hear she’d made it through surgery with no visible signs of cancer.

It feels real now. For both of us in ways we’d have not anticipated. It’s hard for anyone to, because it’s one of those things in life you don’t know until you experience it. So I wanted to share a little about this reality…my reality…with you, dear reader. It’s my hope it’ll be helpful to you or someone you know who may relate.

Our friends and family have been extraordinarily supportive. There’s one  question often posed to me: “So…how are you doing?” These questions are asked with sincerity, not the way you ask your barista how they’re doing when ordering your macchiato. It’s an uncomfortable question to ask, and takes guts to do so. But it’s so appreciated. Simply because I know you care. So thank you.

Yet we should be clear: It’s not been a cakewalk. Those first few days were the hardest, especially once I got her home from the hospital. While I appreciated she could rest in her own bed, I was pretty stressed about not having nurses around, especially given how she reacted to the pain, nausea, and severe headaches while still in the hospital.

Despite knowing others have gone through this, it was tough. A couple of days after getting home, I gave her some meds and pretzels for her tummy and went downstairs to take care of a few things. This was a tricky time, thanks to her meds, as she had a hard time staying awake for more than a moment or two. A couple of minutes later I went back upstairs and as I walked in the bedroom, I saw her head tilted back against the pillow, unconscious, with half a pretzel dangling from her mouth.

My first thought at that split second was that I’d lost her. And that it was my fault for not supervising her enough while she ate to keep her from choking.

My second thought, weirdly, was the memory of George W. Bush with his pretzel incident. This thought was rapidly vanquished.

Either way, I nearly lost it. And you know it takes a lot for me to lose it. When we’ve had discussions around death, I’ve always said I wanted to live longer than her, just so she wouldn’t have to deal with the pain of losing her spouse. But in that extraordinarily brief moment, thinking I’d not be able to hold her in my arms for the rest of my life, that was it. I also imagined having to shamefully explain to her brother how I could have fucked things up so badly.

I yelled, “Annie!” I yelled it again, a little louder this time, as I approached the bed. Then, I gratefully noticed her chest moving up and down with her breathing, as she groggily and probably slightly annoyingly asked, “What?” The incredible sense of loss, fleeting as it was, filled me with love for her in such intensity it overwhelmed me. (She said later that she thought I was mad at her because I was yelling, but doesn’t remember more than that thankfully).

I wish I would’ve taken more active steps to deal with my stress at the time. I’m quite certain it made it harder for her to begin her recovery at home, even if she has no memory of it (her memory of that first week back ranges from non-existent to San Francisco-foggy). The pretzel incident did not help. Eventually I remembered how to identify those things worth worrying about, and those things that didn’t matter much in the grand scheme of things. But it took time.

And there’s the fact that it’s a mastectomy. That’s a big fucking deal, not only because it’s major surgery, but also the emotional roller coaster and adapting required of both patient and partner of a new look. It’s a big change, and neither of us really knew (nor still know) how her breasts will look and feel like when’s everything’s done. But I also realized that it was just wondering, that in the end it was a pointless exercise. We’ll figure it out together, just as we have everything else in our 15 years of marriage.

I’m grateful to be alongside her to live and thrive together through this phase. I’ve felt no less love and attraction for her than the day I greeted her at gate D5 at New Orleans’ airport, holding her tight as she disembarked for our first weekend getaway together.

I love my wife so much more now than ever before—in all earnestness, more than I could have possibly imagined.

For that, I am supremely grateful.

Happy birthday, baby! (Photo below taken this past weekend on a surprise trip to Portland.)