Survivor’s Guilt

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This morning I had my survivorship appointment at the cancer center. This is a next step in my cancer journey–addressing what I need physically and mentally after treatment.

One of the things that I’ve come to realize is most overlooked/not talked about when it comes to cancer is what happens to a person after they complete treatment. When you’re in the throes of the battle, as strange as it sounds, things are almost easier in a way. You have a focus, you have a plan, and you’re really sort of forced to take things one day at a time–handling that day’s treatment, side effects, etc. There’s a routine of appointments, blood draws, check in, check out.

But then everything sort of stops. Appointments taper from weekly to monthly to every couple of months. Your arm stops feeling like a pin cushion (that I don’t mind so much). Your hair grows back (that I definitely don’t mind). Suddenly the routine changes, and you’re supposed to go back to your normal schedule.

Except, nothing feels normal anymore. Even as I go to work, take care of my son, carry on with my regular activities, things are no longer the same. There’s a new sense of fear, anxiety and even guilt.

I’m feeling the latter more acutely this week. On Sunday, Nina Riggs died of metastatic breast cancer. She was only 39. I’ve been following Nina’s story since last fall when her incredible essay about living with terminal cancer ran in The New York Times‘ Modern Love column. Nina’s story resonated with me in so many ways–as a breast cancer patient, as a mother of a young boy, as a wife, as a woman who lost her mother too soon. We had a lot of things in common–we even lived in the same city and had some mutual friends of friends. I wrote about Nina’s essay in this blog, and she was even kind enough to comment and send good wishes my way.

I’ve cried so much this past week for Nina and her family, her two boys in particular. Though I didn’t really know her, I got to know her through her writing and I could empathize with many of the things she experienced during her fight with cancer. I know how hard it was for her as a mom to know she’d have to leave those boys. My heart aches for her in that regard, and for them as ¬†children who lost their mother too soon.

Even more bittersweet is the fact that Nina has a memoir called The Bright Hour coming out in June, chronicling her experience living with metastatic breast cancer. She wasn’t able to live to see its official release. But I hope it will allow more people to not only get to know her great talent, but also shine a light on a type of cancer that is generally kept in the shadows. Nobody wants to talk about metastatic breast cancer because it’s usually¬†not a happy story to tell. But the fact is there are thousands of women and men who face and live with this diagnosis every year. And their stories are important, and I’m glad at least one of them is going to be told in such a public way.

As I wrapped up my appointment this morning, the NP I met with gave me a hug and congratulated me on reaching this point. I know I should be feeling celebratory–and I do in a way–but it’s hard to totally let my guard down and enjoy this moment. It’s a process, and I have a lot of work to go, and I plan on seeking some help to get there. In the meantime, I’m just focusing on feeling grateful. I know how fortunate I am to be where I am, and that’s enough to get me through today.

 

The End of Breastfeeding

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I was one of those lucky moms who was able to breastfeed their child. We hear all this stuff about “breast is best” and women feel an incredible amount of pressure to breastfeed their children. The reality is that, yes, breastfeeding is great for babies. But it’s also incredibly hard. And sometimes, it just doesn’t work out. Babies won’t (or can’t) latch correctly, moms don’t produce enough milk, etc., etc.

The first couple of months were really hard for my son and me. There were plenty of tears from both of us as we found our way, but eventually we did, and established a pretty good groove. So good, in fact, that I breastfed much longer than I ever intended to–21 months.

I always said I’d be thrilled to be able to do it for six months. I never thought I’d be an extended breastfeeding mom. But my son never lost interest, and honestly, I’d backed myself into a corner using the boob as a crutch to soothe him and get him to go to sleep at night. I was actually ready to stop, but afraid I’d never get him to sleep again.

Then cancer intervened. Once I found out about it, I stopped letting him nurse on that side. And this week, the other side had some weird spots on an MRI. My doctor asked if I’d been breastfeeding on that side, and when I said yes, he let me know that was the culprit. I knew I’d have to quit altogether soon anyway because I’m about to start chemo, so I decided that day to pull the plug.

My son was not pleased. He’s too little to understand, so he cried a good bit when I told him no. And then I cried because I never expected our breastfeeding journey to end this way. Even though it was certainly time, we were forced to stop, unable to end it on our own terms. I know it’s the best thing for us both, but it still hurts.

Cancer takes so many things away from a person. I’ve just begun my journey, so I haven’t lost the biggies yet, like my hair or even my breasts, but these little losses are still pretty tough. They serve as constant reminders that my life is no longer in my control, and that things will never be the same again.