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.

 

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Thankful

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

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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.

Hair Envy

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A strange thing has started to happen–people are telling me they love my hair.

This is not a completely new occurrence. Friends, family and coworkers who’ve witnessed this journey over the past year often comment on my wild mane of chemo curls. They know how excited I am to have some tresses of my own again, no matter how unruly they may be.

What’s odd is strangers or people who’ve met me since treatment and don’t know about my cancer making positive comments about my hair.

It happened the other day at Jersey Mike’s, of all places. I was in line and the shop owner–a chatty guy who gabs with all his customers–made a comment about my hair. He throws out compliments generously, so I wasn’t really surprised by his statement. It was the response of the woman standing in front of me in line that left me speechless.

She told me how she always noticed my hair when she’d see me in the restaurant (I have a weekly sandwich habit), wondering if she could make that cut work for her own curly tresses. She genuinely wanted hair like mine, hair that I’m often struggling to love.

It happened again at work. A new coworker has several times remarked how much she loves my hair, asking if it naturally curls like that. To avoid the awkward cancer explanation, I just smiled and nodded. “I’m so jealous,” she replied.

There are few things stranger than having someone tell you they’re jealous of your out-of-control chemo curls.

I recently got an actual haircut (adios, poufy mullet!), which has given my mane a bit of shape. I’m back to my old blonde, and I’m able to pin back pieces with bobby pins to give it some semblance of a style. All this to say: I don’t really hate my hair right now. I kind of dig it, actually.

But, it still feels weird to get compliments. I think it’s because for so long now, my bald head/short hair has been a symbol of my illness–an obvious clue that something is wrong with me.

Now it has gotten to a length that looks as though it were cut that way on purpose. And to the passing stranger or unsuspecting coworker, it doesn’t look any different than any other short hairdo.

It’s just another piece of the puzzle of putting my normal (whatever that means now) life back together. To the rest of the world, I no longer look like a cancer patient. It’s no longer obvious something terrible happened to me. And while part of me has a hard time reconciling that–since the trauma of it is still pretty fresh in my mind–I’m mostly glad to just look like everyone else.

Pinktober

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OK, y’all, I have to get up on my soapbox for a minute. My apologies.

It’s October again. That means the pinkpalooza of Breast Cancer Awareness Month is in full swing. Everything from pink candy to cosmetics to exercise equipment will be hitting the shelves of stores across the country under the guise of doing something good to help combat breast cancer.

But here’s the thing: Most of that stuff does absolutely nothing but generate profits for the company that produces it. Slapping a pink ribbon on something doesn’t make it worthwhile–it makes it a gimmick.

Fortunately, there are some companies raising actual funds for breast cancer research and support. Bustle published a very good list recently. I also noticed this past weekend that Loft is asking customers to donate to the Breast Cancer Research Foundation, in addition to donating 60 percent of proceeds from a line of jewelry to the nonprofit.

Another thing I’ve noticed is the return of all those stupid viral things on social media, asking people to simply post a heart on their profile or the color of their bra or whatever for “breast cancer awareness.” This does NOTHING to raise awareness for breast cancer. This helps NO ONE. In fact, it trivializes something very serious into a juvenile game. I mean, do you see men posting emojis and their underwear color to raise awareness for prostate cancer? No. So please, I beg of you, stop sharing this pointless crap.

If you really want to share something on social media that can be helpful in raising awareness, this image is an excellent choice. It illustrates how many different ways symptoms of breast cancer can manifest. A lump isn’t the only sign, and it’s important to be aware of all the other possible symptoms.

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Finally, if you plan to mark this month by donating to a breast cancer charity, first of all, let me applaud you and say thank you. Secondly, let me point you in the direction of charities that do real good for the breast cancer community, and who have been proven to allocate the majority of their donations to research/support of breast cancer patients/survivors.

One of those groups is METAvivor, which raises awareness and funds for metastatic breast cancer patients and research. Here’s the thing: Early detection is great, but it’s no guarantee that a woman won’t die of this disease. Breast cancer is a wily beast, and when it metastasizes (i.e. spreads to other parts of the body and becomes Stage IV), that is when people die. And the sad fact is, there is an appalling lack of funding going into metastatic research/support. METAvivor works to remedy that problem, and they are definitely worth your support.

The Young Survival Coalition is another great group, particularly for young patients/survivors like me. They provide resources and tools for young women facing this disease. Living Beyond Breast Cancer is another great group that offers a wealth of support to patients and survivors.

And, of course, The American Cancer Society is always a good choice for supporting research to end this horrible disease for all.

There are others out there, but my best advice to you is to do your homework before you donate. Make sure the organization allocates the majority of your donation to its mission. And make sure the products you purchase are actually funding something, and not just a marketing ploy.

All that said, I’m glad people want to help and be aware. And I hope that everyone takes the opportunity this month to check themselves to make sure nothing looks or feels strange or different. I discovered my own cancer by feeling a lump, so doing self-checks matter. Be vigilant, be aware, and be thoughtful.

One Year Later

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It’s hard for me to believe this, but today marks one year since I last had chemo.

I know that’s kind of a weird anniversary to mark, but it signaled the end of the hardest part of my treatment, and a turning point in my treatment plan.

I was originally scheduled to receive four rounds of two drugs, Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide), followed by 12 rounds of Taxol. The AC regimen was tough. But I made it through.

Taxol was supposed to be a walk in the park compared to the cocktail of these two powerful drugs (Adriamycin is nicknamed “The Red Devil” both for its crimson hue and how it makes you feel). But I ended up being the special case that can’t tolerate the medication, and I became very ill. After two terrifying, uncomfortable weeks of fevers, headaches and MRIs, my still-depleted white blood cell count made it clear that the chemo was behind all my troubles.

At that point, my doctor decided to discontinue chemo and proceed with surgery because he feared continuing with the drug would damage my bone marrow. So, I missed the last 11 doses of Taxol. While I sometimes wonder if that will come back to haunt me in the future, I can’t say I was too upset about getting an early reprieve from chemo.

So, how am I today, one year after completing that part of treatment? Pretty good, all things considered.

Physically, I feel great. It’s funny because most of the actual feeling bad from having cancer came from the treatment, not the disease itself. Once I finished treatment, most of that unpleasantness (fever, headache, nausea, fatigue) went away. I’m still dealing with the side effects of menopause–which technically started with chemo and kicked into high gear after my oophorectomy–but that stuff is pretty manageable.

My hair is still a work in progress. A year ago I was completely bald, save about half a dozen little whispies that never fell out (my brave soldiers!). This was my hair about a week ago:

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As you can see, it’s still pretty curly. Although, I think the curl is starting to phase out a bit (the hair coming in at the roots seems straighter). I actually even had a real haircut last week, as the back was getting a bit long and unruly (I basically had a curly mullet).

I also lost a toenail due to chemo (a lovely side effect of Taxol), and that has almost completely grown back in.

Chemo can also cause lingering cognitive issues (chemo brain). While I certainly have my moments of fogginess, I’m not sure they can be chalked up to chemo.

Last week at my checkup, my blood work showed my white blood cell count slightly down. My oncologist said this was normal in someone who’s had chemo, though, so I guess the lingering effects of the drug can still mess with my immunity, too.

So, where am I with treatment now? I am essentially done, save the adjuvant therapy I’ll be on for the next decade. That’s a pill I take every day called Tamoxifen. Since my cancer is estrogen-receptive (estrogen basically feeds it), Tamoxifen works to block estrogen from feeding cells and causing them to become cancerous. Some people have a lot of difficulty with this drug, but thankfully I’ve handled it pretty well thus far.

At this point, I’m mostly just dealing with all the emotional aftermath and figuring out how to move forward in my life. That’s getting better every day, too, and I’ve learned some new coping mechanisms to help me along the way.

Cancer treatment is a long process. I don’t think I fully understood that even at this point a year ago. But standing here now, I’m thankful to have come as far as I have in this past year.

 

 

 

 

 

 

 

 

 

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

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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

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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.