Life

Tentatively Hopeful

/ Jennifer / 4 Comments

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A new year has arrived. Last year at this time, I was positively euphoric for a fresh start. 2016 was one of the worst years of my life, and barring some major catastrophe, 2017 was poised to be better at least by comparison.

And it was. Last year was a pretty great year for me. I had several surgeries and started my adjustment to life as a survivor, but these were all things I could manage. Health stuff aside, things were pretty great in other parts of my life, too. I went to my favorite city with my sister, visited Seattle and Oak Island for the first time, rocked out to a reunited Guns ‘n’ Roses, listened to Andre Leon Talley talk fashion, celebrated my 20th high school reunion and spent so much time just simply enjoying life with the people I love the most.

So, as I approach this new year, I’m…well…a bit nervous. Call it paranoia or superstition, but I can’t help having this sinking feeling that the other shoe is going to drop after having such a great 2017.

I know this is irrational, but irrational thoughts are pretty much de rigueur for cancer survivors, particularly those of us who were already a little neurotic before the Big C wrecked our lives.

That said, I’m trying to seize this year just as I did 2017. I’ve decided that this is the year I “take my body back.” With pregnancy, motherhood and nursing, then cancer and the ensuing treatment, I feel like my body hasn’t been my own since 2013. So, I’m really focusing on being as healthy as I can be. I’m joining the gym in my office park so I’ll work out regularly, and I’m really trying to be serious about changing the way I eat.

I’m also trying to continue the practice of self-care that I’ve dabbled in this past year. That includes things like evening baths, massages, meditation and acupuncture. These things just make me feel good. I’d also like to get back to yoga on a regular basis, too.

I know that I will not always hit the mark with these goals. But, I’m really trying to stick to them and be as healthy and strong as possible. There are few things in this world I can control, but I can at least buttress my defenses in case I need to fight.

Ghosts of Christmas Past

/ Jennifer / 4 Comments

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Christmas is one of those times of year that makes the absence of someone you love more pronounced than usual. The sharpness of the hole they’ve left in your heart–a recent mark or a cavern that’s grown by inches as each year without them passes–seems craggier, more dangerous this time of year. Tears come fast. Memories surprise you at unexpected moments, dredging up feelings you thought long buried.

Of course, the emotional masochist I am, I bring some of this on myself. I willingly repeat rituals that remind me that my mother is gone. Hanging her ornaments on my tree. Baking the gingersnaps she made each year. Listening to Judy Garland–her namesake–croon mournfully about missing someone at Christmas.

The crazy thing about these rituals is that while they remind me she’s gone, they make me feel closer to her, too. This year, as I hung the ornaments, my son joined in–mirroring the annual tradition my mother and I had of putting up the tree together. He also helped scoop flour and lick the beaters as I mixed the gingersnap dough–another thing she and I shared. I could almost feel her there with us.

That sense of her presence intensified on Christmas morning. My husband gifted me a bottle of perfume–Estee Lauder’s Youth Dew.

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Youth Dew is not a young woman’s scent. Even the bottle–cinched in the middle with a dainty gold bow–has a vintage air. Its heady, spicy aroma is not the type of thing you lightly spritz on a spring day. This is a grown woman’s smell. This is the scent she wears when she wants to feel fancy, luxurious, beautiful.

My mother loved Youth Dew. It was pretty expensive for a family on a budget, so when she got a bottle, she savored it. This wasn’t a daily scent–this was something reserved for special occasions. And while I can’t for the life of me remember anything she wore on a daily basis, I remember Youth Dew.

I carefully opened its signature blue box (almost Tiffany, but not quite) and gently removed the glass bottle of brown liquid topped in a gold cap that matched its delicate gold bow. I just held it in my hands for a moment, looking at it, feeling the weight of it, before finally uncapping and spritzing a bit on my wrist.

That first inhale was like one of those life passing before your eyes highlight reels in a movie. My mother at church. My mother on Christmas Day. My mother at my graduation. My mother smiling with a confidence she didn’t often feel. It smelled just like her, a scent I haven’t smelled in nearly 20 years.

But the longer I wore it, the scent began to change. Perfumes tend to do this–alter slightly with the body chemistry of the person wearing it. It still smelled like Youth Dew, but a little different. A little more me than her.

Like the Youth Dew, all these traditions I carry on to keep her alive are just a little different. For a long time, I did them solo, and now my son joins me, building our own traditions on the foundation of my mom’s. And while the same essence of love and ritual remains, the act is changed–a little more me than her.

Another Milestone

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One year ago today, I was on the operating table, undergoing the most intense, invasive procedure of my life–my bilateral mastectomy and lymph node removal.

I knew going into this surgery that it would be tough. I knew the recovery would be long and arduous. But man, I just really had no idea how rough it would actually be.

I remember waking up in the recovery room in horrific pain. I was on all kinds of pain meds, but they only seemed to dull the ache. This was definitely worse than my c-section.

I ended up spending two nights in the hospital because I passed out the first night attempting to walk to the bathroom (I did have help, and I’m pretty sure I scared that poor CNA half to death when I collapsed in her arms).

Once I got home, I spent the next several weeks camped out on our couch, which mercifully has an electric recliner option. As the days wore on, my pain decreased and I got stronger and brave enough to empty my drains myself (blech) and actually look under all the bandages to see the wreckage. Turned out, it wasn’t all that bad.

The best thing of all, though, was getting that call from my surgeon that my pathology report came back clear. No cancer. It’s probably the best phone call I’ve ever received.

Looking back now, it’s kind of hard to believe a year has passed since I finished active treatment (I consider surgery the last step in my treatment). I feel good, I look pretty normal and I’m enjoying life.

Is everything perfect? Of course not. I still have my struggles. But I’ve come a long way, and I’m proud of surviving all this and coming out on the other side. And I’m grateful that I was lucky enough to have such a good outcome.

I never know who exactly is reading these posts, but if you’re someone facing a mastectomy, know that it gets better. Yes, it’s scary and painful and not something you ever thought you’d have to endure. But you can do it. You can get through it, and there is life on the other side.

 

Thankful

/ Jennifer / 6 Comments

Today is Thanksgiving. I love this day for so many reasons. It’s a time to be with loved ones without all the pressure of gifts and such. It’s a time to eat lots of delicious food. And it’s a time to look at your life and count your blessings.

I’m feeling especially grateful this year. A serious health crisis really puts things into perspective, and this last year I’ve learned to appreciate what really matters–good health, the love of family and friends, a place to call home, a job that allows you to pursue your passion.

This time last year, I was in a very different place. I was facing terrifying surgery, and I was trying to find my footing after chemotherapy. I didn’t know what the future held, but I was very afraid it wouldn’t be good.

This is me today. I’m healthy. My hair is growing like crazy. My chemo port is gone–only that scar below my collar bone remains. I’ve lost body parts and gained a bunch of scars. But I’m here. And I’m well.

And most importantly, I’m grateful. To God, who most assuredly saw me through this. To my family, who stayed at my side, picked up the pieces and held me up when I started to fall. To my friends, who love and support me like family. To my doctors, nurses and modern medicine, for saving my life. To complete strangers who’ve touched my life in ways I never expected.

Instead of feeling fear and dread, I’m filled with hope and joy this holiday season. I still don’t know what the future holds, but for now it seems bright, and I am thankful.

The Green-Eyed Monster

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Jealousy is a peculiar emotion. It strikes at the most inopportune times, and often, it makes you feel like a total jerk, or at the very least, kind of pathetic.

As a kid, I was jealous of children with better toys, nicer houses and less embarrassing parents. Through my teen years, my envy centered on girls I deemed thinner or prettier than me, and those who somehow managed to land boyfriends. Often, those girls were my own friends, and it left me with a weird hollowness in my gut to constantly compare myself to them.

We all feel jealousy–it’s one of those utterly human experiences. And with social media allowing everyone to project their best possible selves/lives to the masses, it’s even easier to fall into the trap of envy.

Since my cancer diagnosis, I’ve found myself envious of people for weird things. Once in a restaurant, a very elderly man sitting near me exclaimed, “it’s terrible getting old!” as his family literally placed him into his seat. Instead of seeing his struggle, all I could think was, “but how lucky you are to have lived this long!”

The other week, my boss non-chalantly told me about some back pain she’d been having. She was going to do some yoga stretches to work it out. There was no cloud of fear on her face, no panic in her eyes. Oh, I thought, what I wouldn’t give to brush off an ache in such a carefree way.

I’ve been having recurring back pain for several months now. I put off getting it checked out because it’s pretty mild, and honestly, I had to mentally prepare myself in case it led to bad news. I finally made an appointment to see someone last week.

I ended up seeing the same PA I visited several times last fall with my Taxol fever/headache. Though kind, she also seemed ever-so-slightly exasperated (I imagine her days are filled with paranoid people afraid their cancer has returned/spread) because my pain is so mild. But thankfully, she decided to send me for x-rays just to be sure everything was OK (at least, cancer-wise).

So, I scurried over to radiology, donned a hospital gown and climbed onto the table. X-rays are so different nowadays. I remember huge, clanking machines and heavy lead aprons, but there’s little pomp to the procedure now–just hold still for a few seconds, and poof! You’re done.

Of course, the hell is in the waiting, so I spent the rest of the day nervously checking my phone every five seconds to make sure I hadn’t missed the results call. Finally near the end of the day, I got the call–everything looked good. No sign of tumors or fractures. Giant sigh of relief. Sure, it could be arthritis or whatever, but that I can deal with.

It’s at this point that I feel like an even bigger jerk. Sure, I’ve been dealt a shitty hand. But I’ve somehow managed to make the cards work for me. There are so many people who aren’t that lucky, whose scans aren’t so positive, whose bodies continue to turn against them.

I know that I should be thankful (and I am). I know I should just chill the fuck out (I’m trying). I also know that I should stop being jealous.

Everyone has their own struggles, their own crosses to bear. Just as I look perfectly normal and fine now to the casual observer, I’m covered with scars–both physical and emotional–that few see. The same goes for everyone else. Very few people live truly charmed lives free of worry and pain, so the next time I’m envying that seemingly carefree person, I need to remember things might not be so rosy below the surface. Just as jealousy is an all-too-common human affliction, so is pain.

 

October

/ Jennifer / 2 Comments

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October is my favorite month.

I was born in October (as were both my parents). I got married in October. I gave birth to my son in October (he was due Sept. 30–I instinctively knew he’d wait to make his debut in his mama’s favorite month).

October is when the stifling heat of a Southern summer finally breaks, and crisp air turns the leaves eye-popping hues of crimson, orange and yellow. The mouth-watering aroma of fair food seems to hang in the air all month, beckoning with the promise of once-a-year delights like sugary funnel cake and forearm-sized turkey legs. Children (and adults like me) delight in the thrill of a ghostly tale told by the warm glow of a grinning jack-o-lantern. And football really hits its stride, with some of the year’s best match-ups hitting the gridiron.

It’s really quite magical, when you think about it.

Last year, I felt sort of robbed of my October experience. I spent half the month sick and afraid (and not the good Halloween kind) from my bad reaction to Taxol. The rest of the month, I was still in recovery mode, trying to get my sea legs after chemo and mentally preparing for my bilateral mastectomy. Sure, I still took my son trick-or-treating and watched scary movies, but it wasn’t quite the same.

This year, I feel like I’ve gotten my October mojo back. I kicked off the month with my son’s birthday on one of those glorious fall days that makes you wonder why other seasons even bother. He’s really into Halloween this year, so he and I have decked out his room, our house and backyard with all manner of creepy decor.

I’ve gotten an eyeful of peak N.C. mountain fall foliage while watching the Appalachian State University Mountaineers take the field (while eating a funnel cake, I might add). I’ve watched spooky shows (I highly recommend Lore on Amazon Prime), drank pumpkin beer and delighted in scoping out Halloween decorations with my son.

Tomorrow is my birthday. And this weekend I have plans to hit up some Halloween funsies with my kiddo–a pumpkin festival, trunk or treat–and have lunch with my dad and sisters. Then on Sunday, I get to hear the amazing Andre Leon Talley speak as part of the Ebony Fashion Fair exhibition at the North Carolina Museum of Art. And, of course, it all wraps up with Halloween.

It feels good to enjoy all these simple pleasures again. Though my mind and body are very different now, on a crisp October day, I feel like the old me.

Re-entering the World

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This past weekend, I had my 20-year high school reunion. I’m one of those weirdos who actually enjoyed high school (at least, as much as a person can), and I’ve even stayed friends with a core group from those days.

 

At points when we should’ve gone our separate ways, life has thrown curve balls that brought us back together. Our freshman year of college, a dear friend’s younger brother died in a car accident. My mom passed similarly in the middle of our college years, and several other friends lost parents or close loved ones in the couple of years following college graduation. We all rallied around one another in those times of strife, drying tears, offering shoulders to lean on and laughs to help dull the pain.

And from there we continued to see each other–weddings and all the accompanying hoopla turned into baby showers and christenings. Sure, sometimes years will pass before we see each other, but we’re the type of friends who can get together and it feels like no time has elapsed since our last meeting. We just pick right up where we left off.

As I danced and laughed and reminisced with them this past weekend, I experienced that strange feeling of being back with a group that was my world for a time, even though they no longer hold that status in my life. It’s strange to return to a place/group of people you once thought of as a sort of home when that’s no longer your day-to-day neighborhood.

I had this same sensation last week at the cancer center. For so much of this past year, that place has felt oddly like home to me. Its inhabitants–the doctors, nurses, staffers and fellow patients–they were my people. Just like my high school friends, they get me in a way few do. They understand a very important time in my life the way no one else really can.

But as I sat in the waiting room, my mass of chemo curls spilling around a headband’s tenuous grasp, I began to realize I no longer belong there the way I once did. And as my oncologist went over my whistle-clean lab work and told me I was going to be just fine, I felt this even more acutely. I don’t look sick. I don’t feel sick. I’m not sick.

And just like that guy who graduated five years ago and still hangs out at high school parties, I need to move on. I need to re-enter the world. I need to take cancer patient off my list.

My high school experience is a big piece of who I am, and those friends will always be a part of my life. Same thing with cancer. This disease has changed who I am. There will never be a time that I don’t return to this place, never be a time that it’s not part of my life. Just as my adolescent years helped shape me, so has my bout with this disease.

I don’t want to go back to high school or my teen years, and I don’t want to go back to being a full-time patient. But knowing those who were there for me during both those times will be there for me now, and in the future if I need them, is a great comfort.

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.