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.

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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.

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

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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

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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.