Down the Rabbit Hole

Capture

My back hurts.

It’s a pretty minor pain, to be honest. I’ve had issues with my back much of my adult life (another hereditary thing, I’m certain, since my mother and sister both suffered/suffer back issues), and I’ve had backaches much worse than this. Plus, I’m coming off several major surgeries to my torso, I’m on Tamoxifen, I’m going through menopause, and I lift a 30-pound toddler on a daily basis. Of course my back hurts.

But that rational explanation can’t quite quell my fear. Even the smallest twinge of pain conjures that insidious little voice in my head, whispering, “maybe it’s cancer.”

On a good day, I tell that little voice to fuck off, pop an ibuprofen and keep it moving.

But on bad days, I turn to the place I should probably avoid most–the internet.

It all starts with Dr. Google. After I’ve Googled symptoms, I’m usually still unsatisfied. That’s when I go to a place I definitely should avoid.

The community message boards on breastcancer.org are actually a really great resource. Women and men at all stages of the game can talk to each other, share stories, ask questions, offer support–it’s truly a fabulous space.

It’s also a dangerous place for a person like me. I usually start by scrolling through the topics, but when I can’t find threads addressing my particular issue, I do more targeted searches. These searches bring up threads that are years old, full of people experiencing symptoms and fear similar to my own.

As I scroll through these threads, I can’t help but notice something that makes my heart sink. Members of the message board all add a signature to their posts that lists their diagnosis(es), treatments, etc. Most of them started out with early-stage cancer. There are folks whose cancers are hormone-receptive (like me), folks with no lymph node involvement (same), folks who seemingly should’ve been done with this mess after the first go-round. Their stat lists also include things like “Stage IV,” “bone mets,” “lung mets,” “liver mets,” “brain mets.” (Mets is shorthand for metastasis.)

When you see words like that on a post that’s several years old, you can pretty much draw some solid conclusions as to what has happened to those people in the interim.

In Nina Riggs’ brilliant memoir The Bright Hour, she talks about this online medical obsessing in the essay perfectly titled: “www.heyninariggseverythingisgoingtobeok.com”:

A couple years back, when a therapist helped me realize through a series of exercises that the only thing that would satisfy me on the internet was a website that explicitly said: “Freddy and Benny are going to be just fine. So are you and John.” I laughed out loud at myself. But it didn’t really stop me from seeing disaster at every corner, or checking from time to time to make sure the magical website did not in fact exist.

Yep, that’s what I need. I’m looking for some validation that what I’m feeling is no big deal. A little reassurance that it’s nothing, and I should stop freaking out all the time. I know this is nuts. I know there is nothing on the internet (or anywhere else, for that matter), that is going to give me this reassurance. And even if it did, would I believe it?

The thing is, coping with all of this calls for a healthy dose of faith. I certainly have a strong faith, and while turning my fate over to God and my oncologists is freeing in a way, it’s also terrifying. Just like riding on a plane, I no longer have control, and I think that’s what scares me most.

 

Advertisements

A Bright Light

img_1738

Today’s the day. The amazing book by poet Nina Riggs, “The Bright Hour,” is now available.

I wrote about Nina last year in this blog after reading her remarkable Modern Love essay in The New York Times about living with metastatic breast cancer. That essay led to a book deal, which gives us this gorgeous, gorgeous memoir.

I got the absolute honor of writing a piece on Nina’s book for The News & Record, the newspaper in the city where we both lived. It was probably one of the hardest–and most important–things I’ve ever written in my career as a journalist. Though I’m a writer by trade, I find it so hard to put into words the feelings I have about Nina, her story and this book. She has touched me in ways that I really almost can’t describe, at a time when I was most vulnerable and afraid.

Nina not only captures exactly what it’s like to receive a cancer diagnosis and go through treatment, but she also shines a light on the oft forgotten/overlooked metastatic/stage IV cancer community. Stories like hers are so important, and are so rarely told. Even rarer, told with such beauty, humor and courage.

I cannot recommend this book strongly enough. It will move you, and it will change you. You do not walk away from Nina’s story unaffected. And you’re better for having heard it.

Survivor’s Guilt

nature-sunset-flowers-silhouette

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.