A Small Change

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If you’re a regular reader of this blog (thank you!), you may have noticed I changed the name. When I started this thing, it was a diary of sorts for my journey through a breast cancer diagnosis, treatment and all that goes with that.

But I sort of felt like the name focused too much on my breasts, when this experience is about so much more than those body parts. So, I decided a name change was in order. “Strange Trip” seems apt, as this is probably the most bizarre ride I’ve ever been on. Looking back at everything that’s happened in this past year is truly surreal.

Thanks for coming along with me–it’s been a smoother ride knowing so many are cruising along with me.

A Bright Light

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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

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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.

 

Coming Out of the Fog

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Aside from the jaw-dropping fatigue I’ve experienced with chemo, the hardest thing for me is the phenomenon known adorably as “chemo brain.”

I’d heard about this affliction before, but until I was in the throes of it myself, I had no idea how hard it would be to deal with.

Since I never really got physically ill from my first treatment, I thought I was in the clear as far as side effects go. Obviously a little brain fog and sleepiness are far superior to puking, but it just never really occurred to me how hard those “lesser” side effects would be.

I’m an editor by trade, so my job is to read and rework copy, and also to write stories for a magazine. This is work that you need a clear head to complete. Grammar and punctuation, not to mention syntax and overall organization, are sort of hard to figure out when you’re not firing on all cylinders.

Yes, this was an opportunity to take it easy and take some time off. My very kind boss and coworkers urged me to do just that. But that’s not how I operate. I need to work. It makes me feel normal. It makes me feel useful. And it feeds my passion–I love writing and editing. It’s not just a job for me; this is something I truly enjoy doing.

So, not being able to craft a clever turn of phrase, or whip some lackluster copy into something that sings really is hard for me. Looking at a Word document and feeling utterly overwhelmed because I don’t even know how to begin to approach it makes me feel like I’m out of control. My brain function is something I can’t harness and use as I want, like I’m so used to, and that drives me absolutely batty.

Thankfully, the past two days (now 5-6 days out from treatment) have been better. I know that I probably need an extra day to veg out after my next treatment. I know to be easier on myself. But it won’t be easier to do that, because even though I know self-care is the right thing at this point, it’s the hard thing, and not being wired to operate that way is a challenge I had no idea I’d have to face.