Groupthink

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Not long after I was first diagnosed with breast cancer, I received a packet of information from the cancer center outlining all their various support programs for patients and survivors.

Thumbing through the pages, I discovered I now qualified for all sorts of things from free yoga and massages (sweet!) to makeup classes for chemo patients without eyebrows and eyelashes (eh).

And of course, there was a slew of support groups–general cancer support, caregiver support, prostate cancer support–the list went on and on. I noted there was even a group for young women with breast cancer and mentally made plans to attend once I had some time to wrap my mind around everything.

But as my diagnosis set in and treatment began in earnest, I found no shortage of excuses for skipping the monthly meetings. I was tired. I felt bad. My kid was sick. I had to work late.

Truthfully, my social anxiety was the main culprit keeping me from showing up. So I was thrilled when a friend invited me to join a private support group for breast cancer patients on Facebook. Through this forum, I found the means to connect with others with similar struggles without the awkwardness or time commitment of an in-person group.

I’m still a member of that group today, although sometimes I think about leaving it or at the very least hiding it.

Don’t get me wrong–it’s a fabulous group. The women are truly amazing and inspiring and so kind and supportive. It has been a valuable resource for me, and I’ve even invited others to join.

But there’s a certain level of harsh reality in a group based on a health affliction. Sometimes things don’t go well. Sometimes people die. And when they die of the disease you all have, it’s really scary.

Just this month, one member who had a full response to chemo and was moving on with her life found out her cancer has metastasized all over her body. She’s currently receiving end-stage care. She’s also my age.

Even the friend who invited me to the group had a recent scare with some mysteriously broken bones. After a bone scan she thankfully got the all-clear, but it was another reminder that I can never let down my guard.

Even though it frightens me sometimes, I will stay in the group. I can take breaks for my sanity, but just like I know I can never fully put cancer in my rear view, I can’t let these women go.

 

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Finding the “Cure”

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Yesterday I read a really interesting article in The New York Times on the conflation of the “wellness” industry with medicine. The piece talked about all the current wellness fads–everything charcoal, detoxing, supplements–and how most of them have very little impact on a person’s overall health or longevity of life.

Even more concerning–because you would think it would be obvious–these things do nothing to cure or prevent disease. Yet many people believe “wellness” products and regimens can keep them cancer-free, make their arthritis go away or miraculously reverse the effects of a host of ailments.

Scrolling my Facebook feed, I’m not surprised so many people believe this malarkey. I regularly see posts about the “lies” told by “Big Pharma,” along with posts touting the ability of everything from marijuana to essential oils to treat and cure everything from anxiety to cancer.

Don’t get me wrong–I’m not totally poo-pooing alternative medicine or wellness products/practices. I’ve tried some of these things, and I think there’s merit in things outside the traditional realm of Western medicine, even if it’s just a placebo that makes me feel better mentally. And I do believe in medicinal uses for marijuana, particularly in relieving symptoms like nausea.

BUT. And this is a big but–I would never do or tout one of those wellness practices/products in place of actual medical care/medicine. Because for one thing, I am not a doctor. I have not studied or practiced medicine. Beyond personal experience and internet research, I have no knowledge of how and why certain treatments work for certain diseases.

Just thinking about breast cancer, I had no idea before being diagnosed how incredibly complex this disease is. There’s no such thing as just breast cancer–each case is different, based on a host of variables–rate of growth, hormone and protein receptors, genetic mutations. Two women with breast cancer may have completely different treatments because their cancers are different types.

Because of that, there’s no one magic bullet that cures all cancer. And to suggest that marijuana or essential oils or some yet-to-be-determined plant from a rainforest is the magical cure that everyone dreams of is at best naive, and at worst very dangerous.

Because here’s the thing–there are people who believe this stuff. They don’t do their research, and they don’t ask questions. They read something on Facebook and believe it.  And that person can be in great harm if they read that your essential oil is the only thing they need to treat their cancer.

Listen, I get it–chemo is scary, and it sucks. And sometimes it doesn’t work. But a lot of the time, it does. It did for me. And so I get a little bent out of shape when I see someone with no medical training spouting half-truths or outright lies on the internet to help sell their multi-level marketing company’s products.

It’s a slap in the face to anyone who’s undergone chemotherapy–essentially pointing out you must be an idiot to allow that “poison” into your body. And it’s discounting the years of research and work done to create these drugs and bring them to patients.

The old adage says if something seems too good to be true, it probably is. I feel like that’s more applicable than ever, and I really hope people will keep that in mind, think critically, and ask questions and demand science-based answers. And stop sharing dumb shit on the internet!

**steps off soapbox

Two Years

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Two years ago today I got the call that changed my life forever. Two years ago today I began a journey I never wanted to take. Two years ago I was diagnosed with breast cancer.

On this second “cancerversary,” I’m in a far better place than I was a year ago. I feel better. My hair is longer and more manageable. I’m not constantly gripped with anxiety.

My doctor’s appointments have tapered to once-a-year checks rather than monthly visits. I’ve grown accustomed to the side effects of Tamoxifen and menopause. I’ve settled into that “new normal” everyone kept telling me about.

I remember my oncologist telling me at one of my post-treatment appointments that there would come a time that I didn’t think about cancer every day. It would no longer be a major part of my life. At the time, that seemed inconceivable.

I still think about it every day, but it has become far less of a focus in my mind. I don’t obsess about it, constantly worrying that every little twinge or pain is recurrence or metastasis. I consult Dr. Google far less often, and I’m for the most part staying clear of the rabbit hole that is breast cancer message boards.

I haven’t forgotten, and I wouldn’t say I’m complacent, either–I don’t know that I could ever get to that point. But I am far less freaked out. And I’m much more focused on simply being healthy and living my life. My “new normal” is certainly different, but it’s sweetly normal, nonetheless.

 

Beautiful Broken Things

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My boy’s shell haul

My three-year-old son loves picking up seashells. He combs the beach with laser precision, able to spot a treasure no matter how obscured or buried it may be. And he procures them with gusto, gleefully exclaiming, “here’s an awesome one!”

Last week we made our annual family trek to the beach, so pretty much every day, he and I trawled the shoreline looking for shells.

But after the first day or so, I began to notice something. While I searched for perfect specimens–symmetrical shells with no breaks or holes or other blemishes–my son was a bit less discriminating. Actually, it was like he was intentionally trying to pick up the gnarliest, most pitiful shells he could find.

“Look at this one,” I called to him, holding up a pristine white oyster shell.

He studied it for a second and then held up a broken piece of a similar shell, “But check this one out!”

At first, I would reply in the affirmative just to humor him, but after a while, I started to realize something. The shells he was choosing actually were awesome.

Yeah, they were broken or oddly shaped or full of holes. But they were interesting. Different. Weird. My bucket full of perfectly-shaped, flawless shells was pretty, but it was also boring. I could find the exact same assemblage inside a lamp at the beach house, or in a prepackaged bag at a gift shop.

Whereas his was filled with cool colors, textures and shapes–splashes of purple and amber, the juxtaposition of jagged edges alongside sea-smoothed curves, shells that looked more like moon rocks than sea life, riddled with hundreds of tiny holes.

These shells told a story. They hadn’t arrived on the shore in one piece. They’d lost their inhabitants. They’d been battered, beaten and carried who knows how far by the currents, rolled up and down the beach as storms and tides stirred them up from the sea floor.

As I watched my son marvel over these imperfect pieces, I began to see the beauty in broken things. The uneven, misshapen things. The not-quite-right things. The battered and scarred things.

We get so caught up searching for perfection–the right haircut, the perfectly-shaped breasts, the thin thighs, the flat stomachs, the smooth skin–that we miss the utter, distinctive beauty right in front of our asymmetrical faces.

Those imperfections tell our story–who we are, where we came from, what we’ve been through. They make us interesting. They make us individuals. And whether we choose to believe it or not, they make us beautiful.

Straight Talk

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Even though it’s technically still spring, it’s pretty much summer in the South. The temperatures have already hit 90 more than once, and afternoon showers mean the humidity levels stay high. Hot and muggy–that’s the forecast for the next five months.

Last summer, with my chemo curls in full effect, I struggled to keep my hair from becoming a frizzy mess atop my head. Headbands were my go-to, along with a healthy dose of texturizing cream and some hairspray.

This summer, I actually have a decent bit of length to my hair. It’s actually at or maybe even a little longer than when I got it cut before beginning chemo:

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The chemo cut of 2016

But while it’s longer, it’s certainly not straighter. My chemo curls are still in full effect. And to be perfectly honest, I am sick of them.

Sure, my curls are cute. And I’ve tried my best to rock them proudly. I get a lot of compliments on them. But, again, if we’re being totally honest here, I kind of hate them.

The reasoning is two-fold. For one, they’re a pain in the ass to maintain. I have to use a special shampoo and conditioner to help deflate the frizz. Blow-drying is pretty much impossible, because that just leaves me with a poofy mess. So, to wear it curly, I usually wash it on the weekend (I’m a once- or twice-a-week hair washer), apply some texturizer and let it mostly air dry. And then I usually have to pin back part of it to keep it from being huge.

The other option is to straighten it, which is even more time-consuming–it takes at least an hour to wash, blow dry and flat-iron it into submission. And even then, I never get it totally straight. Those chemo curls fight pretty hard.

The second reason I hate my curls: They’re not me. I never had curly hair. I never wanted curly hair. The only reason I have curly hair is because something terrible happened to me. And so, they’re like a constant reminder that I had cancer. That I went through chemo. That I could go through all of that again.

I’ve done the whole “having fun with different hair” thing. I wore the pixie and dyed it red. I rocked funky headbands and barrettes. And I became a curly-haired gal for months.

But I’m over it. So that’s why I decided to get a Brazilian blowout.

I got the idea from a naturally curly-haired friend at work who recently got a keratin treatment. Her curls transformed to smooth, straight locks, and I was jealous.

So, I brought it up with my stylist at my last color appointment, and she told me she could give me that same look with the Brazilian blowout technique. It’s essentially a keratin treatment that relaxes the hair and reduces frizz. And the best part? It can last up to 12 weeks. Hells yeah.

Last week, I gave it a try. The process was pretty simple. My stylist first washed my hair with a clarifying shampoo to remove any buildup. Then she applied the solution and blow-dried my hair, using a round brush to straighten as she went. Then she used a flat iron to finish, leaving it bone-straight.

And then she washed it again. Weird, I know, but that’s part of the process. After washing and conditioning, she repeated the blow-drying process. Only this time, my hair was dry and straight in what seemed like a matter of minutes. She then flat-ironed it just a bit for extra smoothing, but honestly, that wasn’t totally necessary. Y’all, my hair is SO straight–even in the back, which is a really hard place for me to totally straighten.

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Back view

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The day I got it done

 

 

 

 

 

 

 

 

 

I went three days of sleeping on it, walking around in the rain and humidity, and it stayed pretty straight. By the third day, I decided to test out the washing and styling process.

I did purchase the Brazilian Blowout shampoo and conditioner from my salon, but I don’t know for certain that it makes a ton of difference.

After washing it, I noticed my wet hair was slightly wavy on the ends, but nothing like the ringlets that normally form after wetting it. I combed it out and did my usual blow dry straightening with a round brush. I noticed immediately that it was far less poofy as I dried it, and it was straightening much faster and easier. Once I’d blow dried the hair (in sections–I use clips to hold the upper layers to get the hair underneath), I went over it with my flat iron. This also was much easier and it seemed to get much straighter than usual.

Here’s how it looked after I finished styling it myself:

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Still straight!

I didn’t get it quite as straight as my stylist, but pretty darn close. Each day since I’ve had to straighten it just a touch in the morning after showering (I haven’t washed it again, but it still gets a little damp in the shower). And I just took a walk outside in the super-thick humidity, and it has taken on an ever-so-slight wave, but for the most part, it’s still straight.

Y’all, this is a revelation. This is about more than just my hair. It’s like I got a piece of my old self back–I feel like me again. And with all the changes I’ve experienced in the past two years, that is a very welcome feeling.

 

Hide and Seek

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My mom, me and my sister

The other night, my son and I were snuggling in bed when he pointed to a photo hanging on the wall and asked “Mom, is that your mama?”

The photo–or photos, rather–hang in a collage frame my aunt and uncle gave me as a wedding gift. It was my favorite wedding gift, the only one that made me cry–a collection of images of my mother as a baby, teenager, on her wedding day, with us as kids, alongside similar images of me. A couple of the shots I’d never seen, making them the equivalent of long-lost treasure.

My son is only three, so questions about my mother make me a bit nervous because I’m not quite ready to explain the concept of death to him. I told him, “yes, that’s my mama,” and he replied, “I wish I could see her.” “I wish you could, too, baby,” I replied, trying my best to hold back tears.

Belonging to this terrible club I never wanted to join–children who’ve lost parents–is a game of hide and seek. Once you get past those first few years of grief–the all-consuming kind that can take your breath away–you find ways to live with the pain. To file it away in the back of your mind. To find a good hiding place where it can’t find you. Only, every now and then–usually without warning–it pops back up, and you grieve all over again.

My heart ached as I talked to my son about the grandmother he’ll never know. I hurt for how much I know she’d love and treasure him. I grieve the utter delight he would’ve brought her.

Holidays like Mother’s Day tend to dredge up these feelings for those of us missing our parents. We plaster on smiles and pretend everything’s fine, when deep inside, we’re hurting. Grief has found us again.

And while this holiday has gotten decidedly happier for me in recent years, it’s still bittersweet. As I revel in my own role of mother, I ache for the one not here.

To Be Young and Sick

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A couple weeks ago, I met with a dear friend for coffee and catching up. After running through the latest updates on work, school and family, we got down to the nitty-gritty. What’s really going on. How we feel.

After years of respiratory issues, she was recently diagnosed with a chronic lung condition. While such a diagnosis surely brought some sense of relief and validation, not to mention treatment that has her feeling more healthy than she has in a while, it also has left her with plenty of anxiety and sadness.

I can relate. And as she shared her experiences and feelings, I nodded my head in commiseration. Sure, our conditions were different, but we both shared a common (yet uncommon) experience–dealing with serious illness at a young age.

When I was diagnosed and in treatment, I had so many tell me how lucky I was to be so young and strong. Surely my youth would see me through this. And in a way, yeah, that’s right. My young, strong body certainly equipped me to handle chemotherapy and surgery and all the other trauma of treatment better than an old, frail person.

But didn’t that young, strong body also fail me? Didn’t it betray me? Didn’t it allow me to be very sick and face my own mortality far too soon?

My friend and I shared our grief over losing trust in our bodies. It’s something a lot of people experience, but it wasn’t supposed to happen to us. Not now, at least, when we’re both still in what’s supposed to be the prime of our lives.

We also talked about the utter loneliness of being seriously ill at a young age. My friend related her experiences at the pulmonary clinic, surrounded by patients decades her senior. I knew exactly what she meant having experienced the same thing at the cancer center. While your peer group is doing totally normal things like having babies, traveling, advancing in their careers, you’re in a cycle of doctor’s appointments, trips to the pharmacy and hospital stays.

People your age can be sympathetic and kind, but they truly can’t understand how it feels to be thrust into this world of constant medical attention.

Then there’s the fear and anxiety. Being diagnosed with a serious illness at a young age casts a shadow over your life. Sure, you may be treated and be just fine. You may have clear scans and NED (no evidence of disease). But there’s always that fear lurking in the shadows that it’s going to come back. Or get worse. That the treatments that worked will fail. That the medication no longer does its job.

And when something like this happens to you at a young age, that fear seems almost amplified simply because you’ve got so much life ahead of you. There’s so much time for something to go wrong. You’ve seen the boogeyman, and you just know he’s waiting for you, but you don’t know which corner he lurks behind.

There’s never a good time to face serious illness. But to be young and sick seems especially cruel. Even if you recover (which some do not, an almost unfathomable truth), so much detritus still remains, so much is left to be dealt with. Figuring out the illness is but a first step on a long journey.

Dispatches from the Dressing Room

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When I was younger, bra shopping was a bit of a thrill. As a teenager not even close to letting a boy see anything beyond the occasional strap slip, fancy lingerie was pretty much for my own personal enjoyment, and shopping for it felt a little naughty.

As I got older, I’d make the twice-yearly pilgrimage to the mall, sidling elbow-to-elbow with other bra bargain hunters to dig through the discount bins of Victoria’s Secret’s semi-annual sale. My collection of brassieres grew to necessitate their own drawer, filled with everything from racy lace numbers to the most utilitarian of sports bras.

In my mid-30s I became a mom, and breastfeeding forever altered my lingerie drawer. Punchy pink satin bras languished in favor of more practical–and comfortable–cotton nursing bras that I’d buy in bunches while lugging my newborn around Target.

Then cancer happened. I lost my breasts (or lost them in their natural state). While I opted for reconstruction, what I’ve been left with isn’t exactly what I’d had before. Never let anyone fool you into thinking mastectomy and reconstruction equates a “free boob job” (seriously, stop saying that, people).

That’s how I found myself at the mastectomy bra shop. I actually went there before my surgery to pick up some post-mastectomy supplies (sports bras with a front closure, camisoles with pouches built in to hold surgical drain bulbs). And once I’d healed, I came back for bras to fit my new body.

Unlike Victoria’s Secret, this bra shop operates pretty much by appointment only. Also unlike VS, they take insurance. Yes, this is one fantastic perk of this otherwise pretty shitty turn of events–insurance will pay for my bras. Of course, my new insurance makes it a huge pain in the ass by only approving one bra per day, meaning I have to go to the store multiple times to pick up my allotment one at a time (I’m trying not to complain about getting a bunch of bras for a small co-pay, but it is kind of annoying).

Being at the store is a strange experience. Just like at the cancer center, I’m usually the youngest person in the room, other than the sales staff. I sometimes think the salespeople enjoy that because they get to bring out all the fun, brightly colored, more youthful styles.

In the old days, the thought of someone joining me in the dressing room as I tried on bras would have sent me running for the door. But in this post-cancer world, such indignities don’t even phase me. That’s good, because trying on bras at the mastectomy shop is never a solo experience.

A very kind, sensitive woman helps me figure out what bras will work for my body. She brings me armfuls of different styles and sizes to try, and offers gel inserts to help me fill them out (lots of talk about how I don’t have an “apex”). Yes, even though I’ve gotten implants and fat grafting to help fill me out, the shape is different, and kind of weird. Because all of my breast tissue was removed, there’s a flatness to my chest above the implant, and there are also slight indentations where the grafted fat didn’t take (yeah, that happens).

It’s a long process to find bras that fit my weird shape and look and feel good. And while the saleslady does an excellent job of trying to make it as fun as possible for me, there’s still something uncomfortable and a little depressing about the process. It’s just another one of those moments where I ask myself, “Is this really my life? Is this really my body?”

Body image is one of the biggest struggles for breast cancer survivors. Even if you have reconstruction, it’s never perfect or exactly like what you had before. And you’re left with scars and all sorts of other physical reminders of the trauma you’ve been through. One the one hand, these things remind me how strong I am and what I’m capable of enduring. But on the other, they’re constant reminders that I’m different, both inside and out.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Eighteen

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The strangest thing happened today.

It’s Easter, so we rose relatively early this morning to see if the bunny visited our house last night (he did). We enjoyed a leisurely breakfast. We played outside in the balmy spring sun with my son’s new Easter goodies.

It wasn’t until late in the morning when I checked Facebook on my phone that it hit me–today is April 1.

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This photo showed up in my feed via the “On This Day” feature. Of course, I shared this two years ago today. It’s April 1, the day my mom died.

For the last 17 years, I’ve dreaded this day. This box on the calendar, with its power to transport me to the past, to the single worst day of my life (yes, even trumping the day of my diagnosis). This date that changed my life and my family forever.

But this morning, I spent hours blissfully unaware. I blame the fact that Easter fell on April 1 this year, providing a happy distraction. For a few moments, it felt like just another day, and not a reminder of what I’ve lost.

I think this would make my mother happy. I think she’d smile seeing me play with my son, enjoying every moment of his joy over his Easter basket, and my elation at being able to provide that joy.

I think she’d be thrilled to see me spending part of this day at my in-laws’ house, sitting in the sun with my mother-in-law, who loves me like one of her own. I think it would do her heart good to know that I have these incredible people–who’ve welcomed not only me, but my entire family into theirs–in my life.

Briefly forgetting what today is doesn’t say anything about my grief or how much I still miss my mother. What it does remind me is how incredibly blessed I am to have this family and this life that can produce enough joy to, even if momentarily, blot out the searing pain of her loss. I think that’s something that would make her very happy, indeed.

Graduation Day

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Today I had my six-month follow-up with my oncologist. This is my regular check-in with him that includes blood work and a physical exam.

While these appointments are routine, they kick my anxiety in high gear. My oncologist is very busy, so I always end up nervously playing solitaire on my phone while waiting on him to come into the exam room. Those minutes tick by very slowly–all the bad news scenarios race through my mind, and I have flashbacks of sitting in that room during my first appointment after diagnosis. I think about how hard his job is. While there’s certainly the high of literally saving people’s lives on a regular basis, he’s also the bearer of really bad news on more occasions than I’d like to imagine. It must be tough.

But today’s visit was a good one for both of us. He let me know my blood work looked great, and when I brought up the ongoing back/hip pain I’ve been experiencing for the past few months, he said arthritis or perhaps some degenerative disc pain was the likely culprit, but ordered an x-ray just to be on the safe side. While an arthritic hip would mean I’m just an AARP discount away from full-on old ladyhood, I’m really hoping that’s the problem.

As we wrapped things up, he told me I could start seeing him on a yearly basis. This is a big deal. I’ve graduated from every two weeks to every couple months to every six months, and now, just once a year. My schedule no longer revolves around cancer. My doctor’s appointments no longer fill my calendar. I feel so very…normal.

As I drove home, I had a little talk with myself. I have a bad habit of waiting for the other shoe to drop. Since my diagnosis, I’ve felt like bad news was around every corner. I’ve had some scares and disappointments, but for the most part, things turned out pretty damn well for me.

Yet the nervous Nelly inside me can’t help worrying that something bad is going to happen. The cancer will return. It will spread. I will die. I won’t be here to raise my son. This is is the fear I live with every single day.

But I realized today that I can’t keep living like this. Just like I came to terms with my diagnosis, I need to come to terms with the fact that I’m OK. Right now, I’m OK. I can’t control the future, and worrying about it isn’t going to prevent anything bad from happening.

So, that’s where I am now. I’m going to focus on living one day at a time, and today happens to be a very good day.