Cancer

Down the Rabbit Hole

/ Jennifer / 5 Comments

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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.

 

On Pause

/ Jennifer / 3 Comments

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So, since my preventative oophorectomy back in May, I’ve been in full-on menopause. This is a super-fun condition to be in during August in the South.

I’ve actually been in a menopausal state for more than a year now, since chemo sent me into a chemically-induced menopause last year. But with that, I didn’t really get the full symptoms that I’m experiencing now–hot flashes, night sweats, mood swings, weight gain.

Physical symptoms aside, being menopausal at 38 is a peculiar thing. While the rest of my peer group is still far from this stage of life (some are even still having children), I’m swapping complaints and cooling strategies with women 15 years my senior.

It’s sort of like having breast cancer (or cancer in general) at a young age. It feels very lonely because most of your friends have no idea what it’s like or what you’re going through. And if they can relate, it’s likely because one of their parents has dealt with the disease.

Looking around the cancer center, I’m usually one of the youngest people in the waiting room. And a lot of the older patients look at me either with bewilderment or pity. I often see eyes quickly dart from my face to my wrist–seeing my patient bracelet confirming, yes, I have cancer, too.

I think this is one of the hardest things that no one talks about when it comes to being a young survivor–the sense of loneliness and feeling sort of out of place in your own life. As much as my friends and loved ones are here for me, they really don’t know how this all feels, physically or emotionally. I’m still me, but I’m very different now and my view of the world has changed dramatically.

I think that’s why so many of us manage to find each other online, and why groups like the Young Survival Coalition are so important. Sometimes it’s just nice to commiserate with someone who completely understands. I have found some of that in this last year, but I’m still looking for my “tribe,” as the kids say these days.

In the meantime, I’ll be over here sweating it out, anxiously awaiting fall.

Deja Vu

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The other day, I read an article about a new app produced by the Duke University Cancer Center. The app is for cancer survivors who are having a hard time coping post-treatment. It offers meditation exercises, stress relief techniques and other resources for those who are struggling mentally with the debris of post-cancer life.

Of course, I downloaded it immediately. Upon opening it, I discovered the app is part of a study the school is conducting to help provide better support resources for cancer patients.

As I scrolled through the app answering questions for the study, one of the queries really struck me: Do you find yourself reliving or going back to your treatment?

Today I had surgery again. It was a small revision procedure to fix a wonky place in my reconstruction (yeah, let me dispel any notions that reconstruction is anything akin to having a boob job).

It was my fourth surgery in a year, so it all felt very familiar–the litany of pre-op questions, the antibacterial wipe scrub-down, climbing onto the table in the freezing cold operating room with the blindingly-bright lights in my eyes. Even one of the nurses remembered me from my previous visits.

Oddly enough, today also is the one-year anniversary of my first chemo treatment. The routine of having surgery today conjured up many of the feelings I had that day a year ago. Nervousness over the procedure. Anxiety about how I’d feel after. Squeamish over the needles and blood and pain. Just like this day last year, I’m curled up under a blanket, taking meds, trying to feel better.

And here’s where that question from the app really resonates: Do you find yourself reliving or going back to your treatment?

Trying to eat today has been difficult. Not because of my surgery, but because I keep thinking about how I felt that day after chemo. Just thinking about it almost makes me nauseous. Even this past week as I took my usual walks around the neighborhood, the uneasy feeling in my stomach would return as I remembered taking walks after chemo, trying to power through the side effects of both the chemo and the steroids I took after, in an attempt to take advantage of the benefits of fresh air and exercise.

Everything seems to remind me of that time. The stifling August heat, the way the light looks in the afternoon, the scent of soap I used at the time.

Part of the Duke app study is an attempt to identify the occurrence of post-traumatic stress disorder (PTSD) in cancer survivors. This is something a lot of people don’t talk about or understand. The wreckage after cancer treatment.

Survivors are celebrated, congratulated. “You did it!” “You beat it!” “You can get back to normal now!” While everyone around you smiles and breathes a sigh of relief, you’re still a mess. Afraid of recurrence/metastasis. Dealing with the lingering effects of chemo and surgery (effects that can last for years). Coming to terms with a new, often disfigured body. Being haunted by memories and dreams of the trauma you’ve endured.

I really hope my responses to the study can help Duke gain more insight into the issues that cancer survivors face. Life after cancer is good–truly a gift. But it’s also hard. And if we can figure out new ways to help patients cope, that’s a very good thing.

 

Cancer Chic

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The lovely Anna Crollman

While I never wanted to be diagnosed with cancer, having this disease has led to me meeting some pretty amazing people.

Anna Crollman is one of them. I discovered Anna’s fabulous blog, My Cancer Chic, while scouring Pinterest for tips on making my post-chemo hair grow back. Anna’s also a young breast cancer survivor, and she started the blog two years ago after struggling to find resources for beauty and style guidance for those during and post treatment and surgery.

And in a small world-type moment, I realized that Anna lives just down the road from me in North Carolina. So, I thought she and her blog would be a great subject for a fashion and beauty column I write for The News & Observer of Raleigh.

One thing Anna and I talked about during our chat was how alone young breast cancer patients can feel because most of the women diagnosed with this disease are not among our peer group. She does a great job of providing resources and inspiration to women of all ages dealing with this disease, but particularly those of us who are under 40.

If you’re in treatment, a survivor or just interested in great beauty and wellness tips from a stylish, vibrant young woman, I encourage you to check the blog out!

John McCain and the Cancer Warriors

/ Jennifer / 2 Comments

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Like most people, I was extremely saddened this week to learn that Senator John McCain has an aggressive form of brain cancer called glioblastoma. I lost a cousin to this two years ago, so I know what a dreadful diagnosis this is.

In the wake of his announcement, the internet was flooded with messages of support for Senator McCain. It was encouraging to see people across the political spectrum all agree for once and rally around one of their own.

This morning, I read a piece in The Atlantic on Senator McCain and the language that’s been used to show support for him: “fighter,” “strong,” “tough.” The writer says:

“These are all just expressions, I know, things we say when we don’t know what else to say. But they also betray the American way of thinking about health—as an individual battle, where death is losing that battle.”

It’s funny, but until I went through a battle with cancer (see, another war reference!) myself, I never really noticed all the warrior/fight language associated with this disease. Even in my own mind, one of the first things I thought was, “I’m going to fight this.”

There’s something about these statements of steely resolve that do seem to give us power. Taking on a fight gives us a sense of control, even if we really have no control at all.

But here’s the thing–not everyone wins. Some battles are pretty much already decided before the first shots are fired. Some cancers are untreatable. Some cancers cannot be cured. Some cancers only seem to be beaten, then come back months, years, decades later with an angry vengeance. And people with those cancers get very sick, and then they die.

Did they not fight hard enough? Was their resolve too weak? How could they lose?

People always mean well when they urge cancer patients to fight, or remark about their positive attitude being so beneficial. And they’re not wrong–it certainly can’t hurt to have a fighting spirit and an upbeat outlook.

But that’s never enough to cure a disease. And statements like these, though unintentionally so, diminish the experience of those who don’t “win” their bout with cancer.

No one wants to think about the harsh reality of cancer: It kills people. But to turn away from that truth for the easier battle cries and pink-ribboned paraphernalia is to avoid having the important discussions about how we battle cancer before it attacks people–through research and innovation. And it overlooks the forgotten who are just trying to maintain as long as they can–Stage IV mothers, fathers, husbands, wives, sons, daughters–knowing their “fight” cannot be won.

I hope Senator McCain can beat this. But if he doesn’t, I hope his death will serve as a reminder that we have so much fighting yet to do to prevent this disease from striking in the first place.

One Year

/ Jennifer / 5 Comments

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One year ago today, my life changed forever.

One year ago today, I got the news no one ever wants to get: “You have cancer.”

My first “cancerversary,” as it’s called by so many who’ve dealt with this nasty disease, felt almost like groundhog day. Last year, when I got the news, I was en route to Chicago for a business trip. The thing is, it’s a trip I make every year at the same time. So, once again, I’m in Chicago. And I feel almost like I’ve been reliving the events of last year.

Just like last year, I spent my layover in the Atlanta airport. And I spent today walking the furniture market in Chicago. I’m staying in the same hotel. Even the weather is eerily the same–hot and stormy.

Looking around this hotel room that looks exactly like the one I retreated to last year, those feelings of terror and despair feel closer to me than they have in a while. And yet, in this same space, I remember good things, too.

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The Chicago sky, last year

In that first awful night after getting the news, I holed up in my room to wallow. I cried–my body heaving with sobs that left me practically breathless. And then, I began to pray.

I’m not a particularly religious person. I don’t go to church. I don’t read the Bible regularly. But, I’m definitely a spiritual person. I pray a lot. I talk to God. And I have a pretty strong relationship with him.

That night, I begged. I bargained. I reasoned. “Please don’t take me now. My son still needs me. Please let me see him grow up.”

And in the midst of my agony, I suddenly felt calm. A strange feeling of peace washed over me, and somehow, I knew everything would be OK.

While some will say it was merely my mind playing tricks on me or whatever, I truly felt it was God letting me know things would be alright.

I’ve carried that moment with me throughout this past year. When things got really hard, and I feared the absolute worst, I returned to that night in this hotel. That moment of peace has sustained me through this ordeal. And though I’m still fearful, I keep that peace with me to calm the worry and anxiety that simmers deep within.

I’ve lost a lot this past year: My breasts, my hair, my ovaries, my peace of mind. I lost my innocence in the sense that I no longer trust my own body. It has betrayed me, and I’ll never be able to feel an ache or pain without that voice in my head wondering if it’s a sign of something much worse.

But I’m still here. And while I’ve lost so much, I’ve gained so many things, too. Perspective. A new sense of gratitude. A renewed appreciation for the gift of life. The knowledge that I am stronger than I ever thought.

Today has certainly been bittersweet, but mostly, it’s been a good day. I’m thankful to be here. To be well. To be alive. And for today, that’s enough.

 

A Small Change

/ Jennifer / 8 Comments

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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.

I Heart New York

/ Jennifer / 1 Comment
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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

/ Jennifer / 3 Comments

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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

/ Jennifer / 6 Comments
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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.