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.

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I Heart New York

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View from the roof of The Metropolitan Museum of Art

Many years ago, I fell madly in love with New York City.

I love everything about it. The architecture. The culture. The pace. The noise. The seemingly endless choices–you can go, see, do, eat almost anything there. It’s truly magical to me.

The first time I ever visited, my younger sister Wendy came along with me. This year, we decided to make the trip together again for a weekend. We hopped a plane this past Friday and spent a couple days exploring.

And as I traversed streets I knew well, and discovered new things along those I’d never visited before, I realized something: In New York, I’m just another person. I’m not a person who had cancer. I’m not someone to be pitied. I’m just a woman with some wild, short curly hair.

At home, everyone knows what happened to me. My family, friends, coworkers, neighbors–they all see cancer when they look at me now. But surrounded by strangers who were too busy hustling through their own lives to pay much attention to me, I was just myself. Just another woman combing the racks at Century 21. Just another art lover marveling at a Jackson Pollock at the Met. Just another tired person hailing a cab at the end of a long day.

It felt nice to be anonymous. To not raise concern. To just move through the day like anyone else.

Aside from that, I got to do some really fun things while visiting. First and foremost, I got to visit Rue La Rue–the Golden Girls/Rue McClanahan-themed cafe. I am probably one of the biggest Golden Girls fans on the planet, so it was damn-near a religious experience for me.

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The actual phone from The Golden Girls!!!

I feel a special connection to Rue. I actually got to meet her almost 10 years ago (one of the most incredible nights of my life!), and knowing she, too, survived breast cancer makes me feel like she was truly a kindred spirit.

In honor of the visit, I donned my Miami-best, and the owner of the restaurant (who was friends with Rue) told me that if Rue were alive, she’d probably snatch the shirt right off me, she’d love it so much. Best. Compliment. Ever.

And speaking of fashion, I got to see the amazing Rei Kawakubo Comme des Garcons exhibition at The Metropolitan Museum of Art. I love weird, artsy fashion, and this delivered that in spades. Kawakubo is known for her outlandish, sometimes unwearable designs. These pieces are meant to challenge the conventions of fashion design and show how thought-provoking and artistic clothing can be.

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Rei Kawakubo/Comme des Garçons

But best of all, I got to spend lots of quality time with my sister. We talked and laughed and had a really great time. She and I are of one mind when it comes to NYC–we love all the same things about the city and always have a blast exploring it together.

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Sisters selfie on a rooftop bar

It’s been almost 15 years since the two of us first came to this amazing city. So many things have happened in those years. We’re both practically different people now. But, in so many ways, we’re still the same girls. And I hope that never changes.

Mind Games

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Yesterday was one of those days that could have either gone spectacularly bad or wonderfully good. Thankfully, it was the latter.

My son began his first-ever summer camp yesterday, a swim camp at the pool down the street from our house. He’s been taking lessons for more than a year now from the folks who run the camp, but since my mother-in-law takes care of him during the day, this would be his first time being left somewhere without a family member.

I had no idea how he’d react. He’s very clingy to me, so I expected tears and possibly a full-on meltdown.

To add to that anxiety, I also had a checkup appointment with my oncologist scheduled at the same time camp was to begin. Thankfully, I would be able to drop him off a bit early and with the cancer center being just down the road from my house, if everything went smoothly, I could make it to both things.

While anxiety-inducing, this logistical dance was an almost-welcome distraction from my appointment, wherein I’d receive the results of a brain MRI I had last week, along with my regular blood draw.

Last fall, when I got really sick after my first dose of Taxol, I had to get a brain scan done because they were afraid of brain metastasis. Thankfully, the symptoms I experienced were from the chemo, and the scan was clear, with one small exception–a little cyst on my pituitary gland. My oncologist said it was nothing to be alarmed about, and they would keep an eye on it.

Fast-forward eight months, and here we are, getting a follow-up MRI.

Even though I knew this was sort of a routine maintenance thing, I was still terrified. As the tech said to me almost apologetically as he got me prepped to slide into the tube, “I know nobody wants to be here doing this.” I assured him I didn’t, but I also appreciated that he was there to do the job. There are few things scarier than being rolled into a tiny tube (I don’t know how a claustrophobic would ever survive) that makes noises that sound like the effects from some terrible space invaders B-movie (laser sounds, lots of banging and clanging), knowing that this machine could reveal actual invaders taking over healthy tissue in your body. Martians sort of pale in comparison.

I had to wait a whole week to get the results this time. I tried my best to not think about it, to stay busy and distracted. But sitting in my doctor’s office, staring at the framed photos of his grandkids and a “Doctors have a lot of patience” cross-stitch on the wall, I felt as though I might crawl right out of my skin.

I sometimes wonder what it must be like for my oncologist before he walks into that room. On good days, he delivers news like he gave me–all clear, nothing’s changed, you’re going to be just fine. Others, he tells people things they never want to hear: it’s spread, it’s bigger, it’s not responding to treatment.

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Never has negative been such a sweet word.

I floated out of the cancer center with my clean report in hand, once again feeling an almost overwhelming sense of gratitude. I know how easily my story could change, or have gone awry. I know how many others are suffering and have suffered. So I am thankful for every moment like this. And I’m trying to use these little victories to propel me forward.

Back at camp, my son had a great day, too. There were no tears at drop-off–just a quick kiss and “bye, mom!” as he zoomed off to join the other kids on the playground. That day, he jumped into the pool for the first time without holding the teacher’s hands–a big advance for our previously timid to jump toddler. Both of us, leaping into the future.

Good Days

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My boy, on the pathway to happiness

I’m the type of person who always searches for some sort of lesson or sense of meaning when a bad thing happens. Even when terrible things occur, there almost always seems to be at least one little kernel of good that comes of the calamity. I need this silver lining to help me make sense of the bad, heal and move on.

When my mom died, I spent a long time looking for the why. It seemed so cruel and unjust to have her taken from us so soon. But in the years since her passing, I’ve been able to recognize the gifts her loss gave me. A stronger relationship with my dad. The means to live on my own after college. The pain that fed my creativity and allowed me to realize my true calling as a writer.

With my cancer diagnosis, I’ve tried to do the same thing. In the wreckage of treatment, fear and medical bills, I’ve found little blessings that have given me a sense of meaning in this horrible thing. A new sense of perspective (I no longer sweat the small stuff), a deeply humbling sense of gratitude for the people in my life (my family, friends, coworkers and even complete strangers have floored me with their love and kindness) and a new-found appreciation for life.

That last one is a biggie. I feel like I’ve always been appreciative of life, but like most people, I had a tendency to get caught up in the day-to-day bullshit that can distract you from what really matters.

But now, I have a new awareness of my mortality. I know that my time could be cut short. I know that each and every day matters, and I need to do everything I can to make the most of them, no matter how many I have left.

So, this year I decided to do everything I could to live my life to the fullest. Take the trip. Go to the show. Eat the amazing meal. Buy the fabulous pair of shoes. I’m not going overboard, mind you–everything in moderation and all that–but rather, I’m telling myself to say “yes” more often and enjoy as much as I possibly can.

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A boy and the sea

With that in mind, I’ve jam-packed this summer with fun. Last week, we went on our family beach trip, this year visiting Oak Island, N.C., for the first time. It was an amazing trip–just the right balance of activity and utter laziness. Clear-blue sunny beach days with a couple of rainy afternoons tailor-made for napping, reading and boozy card games.

Perhaps most enjoyable, though, was watching my son fall madly in love with the beach. This was his third beach trip, and this was the year he finally got it. The first year, he was just a baby and the water freaked him out. Last year, he was a bit more into it, but still not totally convinced.

This year, though? I had to practically drag him inside every afternoon. He played in the surf, squealing with delight as tiny fish skittered around his feet. He ran up and down the shore, greeting dogs, other children and pretty much anyone who crossed his path. He picked up two buckets worth of shells, and he and I built more sandcastles than I can count.

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Muse

Last night, I continued my quest for living life to the fullest by attending a concert with my sister.

In my younger days, I went to concerts all the time. But, as I’ve gotten older and become a mom, I’ve seen fewer and fewer shows, especially those that happen on week nights.

But last night was different. When my sister asked me months ago if I’d like to go with her to see Muse and 30 Seconds to Mars I said yes without hesitation. If I’m being totally honest, I barely know these two bands. But I really wanted the opportunity to hang out with my sister, so I decided to go for it, even though the concert was on a Thursday night.

I’m so glad I did. Even though I didn’t get home until 2 a.m. (and had to drag my ass into work in the morning), I had the best time. The show was amazing. Muse was excellent, as was 30 Seconds to Mars. If you’re not familiar, actor Jared Leto is the lead singer of 30 Seconds. Yeah, Jordan freaking Catalano.

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Be still my teenage heart

If you were a teenage girl in the ’90s, chances are you were in love with Jared “Jordan Catalano” Leto, the bad boy who broke Claire Danes’ heart on the amazing series “My So-Called Life.” And then, of course, Jared won an Oscar a few years ago for his incredible performance in “Dallas Buyer’s Club.” Suffice it to say I was stoked to see him in person.

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I even love him with a Unabomber beard.

So, you can imagine how I lost my shit when he ran off the stage last night to serenade a boy in a wheelchair mere feet from where I was sitting. It was a sweet moment, and it made the concert even more special and amazing.

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Sisters

But even more than seeing my teenage TV crush, spending some quality time with my younger sister truly made the night. We sang, laughed and even cried a little–and I loved every minute of it. In the immortal words of Rayanne Graff, “We had a time.”

The old pre-cancer me probably would have declined her invitation. Driving to Charlotte for a concert on a school night? Sounds like too much trouble. It’s easier just to stay home. But that kind of attitude causes me to miss out on memorable experiences, so I’m trying my best to fight that instinct to stay in. Life’s just too short not to sop up every drop of enjoyment possible.

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.

On the Cusp

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Memorial Day is my favorite of the summer holidays.

I like the sentiment behind it–honoring those who died serving our country in the military–and I like its place as the unofficial first weekend of summer. On Memorial Day, the long, lazy days of summer stretch before us with the delicious promise of three solid months of warm weather, vacations and fun outdoors.

Last year, I felt robbed of my summer. Or, at least of half of it. I was diagnosed in early July, smack-dab in the middle of summer. I went from pool parties and beach trips and baseball games to chemo and hair loss and fear–so much fear.

While the rest of the world was still enjoying the sun, I was cowering indoors, terrified of my own body. My beachy glow was replaced with the ghostly pallor of a person who spends her days inside the cancer center, poison flowing through her veins. While my son was still wide open, eager to soak up every minute of daylight for playtime, I struggled through the evenings, exhausted from the Neulasta shots yet uncomfortably wired from the steroids that helped keep me from puking my guts out.

I’m excited for this summer. I have a lot of fun things planned–a beach trip with my family, a trip to New York City with my sister, work trips to Chicago and Vegas, a Guns ‘n’ Roses concert (woot!). There will be pool days, and barbecues and hours spent helping my son build castles in his sandbox.

But as excited as I am for this season, I’m also anxious. I’m afraid something else will happen. Something new will pop up. More bad news. I have a follow-up brain MRI scheduled next month, and just thinking about it makes me nauseous.

This is my life, post-treatment. No matter what good thing I have going on, there’s that little voice whispering from the depths, reminding me what could go wrong. I’m getting better at tamping it down, but it’s definitely an ongoing process.

 

The Sweetest Word

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I got a card in the mail from my OB/GYN office this week. Just a simple card with a couple of check marks and one beautiful, glorious word: “benign.”

For a cancer patient, this is the best word in the world. It means everything’s OK. Everything checked out. You can actually exhale.

In my anxiety-ridden mind, I’d already diagnosed myself with ovarian cancer before this procedure. I’d gone as far as mentally preparing myself for the news, trying to wrap my mind around what that would mean–more chemo, more invasive surgery, maybe radiation, maybe death. This is what life is like post-cancer. Worst-case scenarios running through the mind all the time.

But thankfully, this is one I no longer have to worry about. I am so grateful.

 

Mother’s Day

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Me, my mom and my younger sister, 1985?

For many years now, Mother’s Day has been a difficult holiday for me. I lost my mom about a month-and-a-half before Mother’s Day 2000, and since then, the day has been a yearly reminder of the huge void in my life.

But over the past few years, I’ve slowly started to change my perception of this day.

In the decade since I met my husband, I’ve joined him in celebrating his mother, my now mother-in-law. From pretty much the moment I met her, she has treated me like a part of her family. And while she’s not a substitute for my own mom, she has become someone I depend on, confide in and love as I would my own mother. I am so grateful to have her in my life.

I’ve also been so very fortunate to have a circle of lifelong friends whose mothers I consider second-moms. I grew up in these women’s homes, and they’ve rallied around me when my mother passed, when I got married, when I had a baby and when I faced cancer. The love these women have shown me over the years makes my heart swell, and I am so thankful to have the kind of friends who gladly share their wonderful mothers with me.

I’m also truly blessed to have an older sister who’s shown me what it means to be a great mom. Dawn is 14 years older than me, and she’s raised two intelligent, kind, successful women, instilling them with a sense of confidence and a strong faith that sustains and guides them. When I think about the kind of mom I want to be, I often look to her example.

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Me and my sweet boy, photo by the amazing Jordan Brannock

And, of course, the biggest and best thing that has changed my feelings about this day is becoming a mother, myself. My son is my greatest gift, my greatest achievement, my greatest love. He fills my heart with a feeling of pure joy and love that I never thought possible. He inspires me to be a better person, and he makes everything I’ve endured over this past year worth it.

Is Mother’s Day still a hard day for me? Absolutely. I will never stop missing my mom, and the hole that her loss has left in my heart will never be filled. But I know that I am lucky to have some incredible mothers in my life, and I have the opportunity to be that for my son, and for those things I am forever grateful.

Notes from the OR

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Pre-op fashion

Yesterday’s oophorectomy went well. My doctor didn’t see anything that looked weird (huge sigh of relief), and the procedure was pretty uneventful. I was home by around lunchtime.

My torso scar collection has grown by three, although these are pretty small (and let’s be honest, my bikini days are over anyway). I’m sore, but it’s not unmanageable–much less pain than my c-section or mastectomy.

I’m not going to lie, it was a little sad to take a pregnancy test (standard procedure) and then sign a form confirming that I realized going through this procedure meant I wouldn’t be able to have any more children. It’s weird because even though we’d already made the decision to only have one child, the finality of all this still feels like a loss.

But what I’m gaining–some additional peace of mind–is worth it. At the end of the day, I have to remember that it’s not about mourning children that won’t be, but celebrating the gift of time with the precious child I do have.

An Ounce of Prevention

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In what has started to feel like a regular occurrence for me, I’m preparing for another surgery this week.

This time, I’m going under the knife for an oophorectomy, which sounds completely made-up but is the medical term for removing the ovaries. My fallopian tubes will be removed, as well.

Because of my BRCA2-positive status, I am at a higher risk of developing ovarian cancer. And ovarian cancers often spread and even sometimes start in the tubes. So, they all have to go.

The procedure will be done laparoscopically, which I’m told makes it much easier. My OB/GYN, who will perform the surgery, assures me it’s a very standard procedure.

I have mixed emotions about it. On the one hand, I’m just ready to get it over with. I’m ready to have one less body part to worry about possibly sprouting cancer.

On the other hand, I’m completely freaked out. Not really about the procedure itself, but more of the what-ifs. My greatest fear is waking up to somber faces telling me they found something abnormal. A tumor. Weird cells. More cancer.

I’m also feeling a bit sad about what this procedure means for me. I was done having children, but once this operation is finished, there is no possible way I could ever change my mind on that. There’s a finality to it that hurts a bit.

On top of that, my doctor warned me that I will pretty much go into menopause immediately after the surgery. I’ve been in a chemo-induced sort-of menopause for months now, so I’m hoping the side effects won’t be too bad. Mentally, this is another one I’m having a bit of a hard time with because I shouldn’t have to be dealing with this now. I’m too young. It’s too soon.

Last night I had two dreams about the surgery. There was the standard stress dream of not being in the right place, not being able to dial the numbers to call and let them know, etc. Then I dreamed that I was going in not to just have my ovaries removed, but to have gender reassignment surgery to transition me to becoming a man. I’d already had my breasts shaped into the most incredible set of pecs I’ve ever seen, and I was sporting a short brown hairdo. Hoo-boy, chew on that one, Mr. Freud.

While I have no control over the completely bananas world of my dreaming subconscious, I’m trying to keep the pity parties to a minimum. Yes, all of this is incredibly crappy and unfair. But, I’m also really lucky. I have the chance to possibly prevent another bout of cancer, to possibly save my life. For that,  I am truly thankful.