Checking In

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I had my now annual (down from weekly, monthly, every few months) check-in with my oncologist a few weeks ago. This is an appointment that always makes me nervous.

The visit basically entails getting blood work done and then talking with my oncologist about the lab results and how I’m feeling. He also does a physical exam to make sure there’s nothing weird going on with my chest or lymph nodes.

First, the really good news: I’m fine. My doctor said my labs were perfect, and in his words, I “couldn’t be doing better.”

I don’t know that that’s exactly true.

Returning to the cancer center is always a weird experience for me. I spent so much time there during treatment and in the year after. For a time, it felt comfortable, welcoming. It was one of the few places I felt like I fit in with my bald head or weird chemo curls. I knew how shitty all those people sitting in the chairs in the lobby felt–both physically and emotionally. There was this odd sense of belonging.

Now, that is gone. When I walked in there this week, I felt like an outsider with my long hair and summer-tanned skin. I looked more like a caretaker than a patient, and physically, I felt that way, too. I could certainly still empathize with those struggling through chemo and radiation, but my feelings aren’t so raw and at the surface. And instead of feeling comforted, I couldn’t wait to get out of there.

I realize this is a good thing. This is me re-entering the regular world, finding some sense of my “normal” life. Moving on. Living.

But at the same time, it troubles me. When you go through something so epically traumatic as a cancer diagnosis and months of intense treatment, it leaves you feeling so off-kilter. I know I’ve talked about this a lot, but that’s because it’s important and ongoing–moving on with the rest of your life is really hard.

Going back to the cancer center is really triggering for me now. I can almost conjure the sick feeling of chemo when I’m there. Seeing the people there for treatment–with their tote bags and pillows–I get antsy. I know what they’re in for. I know what the next days and weeks hold for them.

While I was in treatment, I always thought I’d love to come back and volunteer at the cancer center. So many survivors do, and it’s really amazing to see them there when you’re going through it–they made it, and so can you, is the message they send. But I’m starting to think I will never be able to do that. I can’t imagine being back in that infusion room again–the thought of it makes my palms sweat. As much as I’d love to help others, I don’t think that’s the way for me.

Instead, I’m turning to my writing. If you read this blog with any regularity, you know I’ve been writing more about my experience for numerous publications. I’m working on a memoir, too, focusing on how hard it is to get on with your life after going through something like this. Hopefully one day I’ll actually finish it!

Until then, I’ll be here, sharing these thoughts and reminding anyone who is in a similar boat that these feelings are normal, and it’s OK to still struggle. I do, and I want to talk about it so others can feel less alone in this process.

 

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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

Yes, I’m Writing About My Hair Again

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I feel like I talk about my hair too much (I definitely think about it too much), but as a cancer patient/survivor, hair is a really important topic. It gives you something a little healthier to obsess about than fear of recurrence/metastasis–it’s far more fun to research hairstyles on the internet than to constantly consult Dr. Google with symptoms.

This past week, I had a particularly exciting hair development. I went to see my stylist for a routine color appointment. I also wanted her to trim my ends and take some of the bulk out of my hair with thinning shears (I have really thick hair). This was all pretty much my normal hair maintenance routine before chemo.

After doing all that, she asked if I wanted her to straighten my hair. I hesitated–I’d tried this myself at home a few weeks ago and wasn’t crazy about the results–but decided to go for it since her skills are far superior to mine.

Boy, was I glad I made that decision!

Holy moley, y’all! I almost skipped out of the salon. This was the first time I looked and felt like my old self in almost a year-and-a-half. I was practically giddy in the car as I drove back to work. And the pleasantly surprised gasps and compliments my coworkers showered me with once I returned from my lunchtime appointment only further buoyed my spirits.

Of course, I don’t have the skills or patience to maintain or replicate this look at home. A few days after the blowout, I attempted to create the look again myself. I got it sort of straight, but not nearly as nice as my stylist did. But just knowing it’s possible feels sort of magical–it’s almost as though I got a piece of myself back.

I started thinking about my cancer journey through my hair. I feel like I’ve come sort of full-circle. Here’s what I mean:

This was me pre-chemo. It’s hard to believe my hair is almost as long as it was when I cut it just before I started chemo.

And, chemo time. The shot on the left was the day I had my husband buzz my hair off after I started getting bald spots from the clumps falling out. That was my patchy Britney Spears circa 2007 look. On the right is the only photo I ever took and saved of myself completely bald. I know a lot of women who fully embraced their baldness and have lots of gorgeous photos of themselves sans hair. I just never got to that point. I hated it, and when I looked at myself with no hair it just made me feel even more like a sick person.

The shot on the left is from mid-December 2016, about two-and-a-half months after my last chemo treatment. I was also about two-and-a-half weeks post-mastectomy there. I drug myself out of the house for my work holiday party that day because they were presenting me with the Employee of the Year Award. I remember sitting at a table, and a coworker introduced herself to me–she totally didn’t recognize me with no hair.

The shot on the right is about a month later, after I dyed my hair red.

These photos were taken in February and March of last year. March was six months post-chemo. I actually really liked this stage of regrowth. My hair was long enough to style a little, and I thought I looked cooler than I actually was with my pixie cut. Plus, the chemo curls hadn’t come in so much yet, so my hair wasn’t all over the place.

Hello, chemo curls! These photos were from May and August of last year. As my hair got longer and curlier, it got harder and harder to style. I had no clue what to do with it. So I started wearing headbands. They were the only way I could keep my hair relatively tame and in some sort of style. I also fell in love with Not Your Mother’s Beach Babe Texturizing Cream, a product I still use to this day to help keep my curls under control.

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When I’m wearing my hair curly, which is most of the time, I have to do a little work to keep from looking like Bob Ross’ blonde little sister. Though it’s expensive, Deva Curl No-Poo shampoo and One Condition Decadence are awesome. My hair is noticeably softer and less frizzy when I use these products. I also like their Set It Free moisture-lock finishing spray. A few spritzes of this give my hair a little hold without making it stiff.

Another thing I can’t live without these days is bobby pins. When I’m wearing it curly, my routine is to wash it, work in a little of the texturizing cream and pin back pieces on either side so that they lie flat. Then I let it air dry. Or like today, I’ll pull some hair back off my face and pin it back in the center of my head.

One more thing to note: Getting haircuts is a crucial part of growing your hair out. When you go from having nothing, it seems counterproductive to cut what little bit you have. But it is so necessary! I never thought about it until I went through it, but while your hair grows at the same rate on your head, different placement makes it look longer in spots. In other words, if you don’t trim the back you will have a mullet. Nobody wants a mullet (sorry, Mike Gundy). Seeing that precious hair you’ve only just gotten back falling onto the floor with every snip is hard, but it’s worth it.

I remember being fresh off chemo with my peach fuzz head, barely able to imagine no longer being able to see my gleaming white scalp. But here I am. And if you’re going through this and feeling like you’ll never get there, trust, you will, too.

 

 

 

 

 

 

 

 

Awkward Conversations

One of the things people never really warn you about with a cancer diagnosis are the awkward conversations.

There’s the unpleasant business of telling your family, friends and co-workers. There are the “how are you feeling” questions that during chemo you want to answer, “like a steaming pile of shit just flattened by a tank.” But you don’t because you’re Southern and too polite for your own good. There are the conversations with your oncologist about how menopause is affecting your sex life. SO much awkward.

And the thing is, they don’t end with the conclusion of treatment.

This week, I went to a conference for work. I saw lots of people from the industry I cover who’ve seen me go from a long-haired blonde to a pixie-cut redhead to the blonde, curly mop I’m sporting now.

Because I never made any sort of public announcement about my cancer (because that would have been super-awkward), most of them have no idea what I’ve been through or why my hair has changed so drastically.

One sweet gal remarked how much she loved seeing all the hairstyle changes over the past year. She was genuinely complimenting me, so I just smiled. But inside? So awkward.

Another time, a colleague from a previous job who now works for one of the furniture companies I write about remarked on my short, curly hair. “Is it naturally curly?” She asked, having always known me to have straight hair. “No,” I responded. Later I laughed, realizing she probably thought I’d cut my hair off and permed what was left. She probably thought I’d lost my mind!

I could’ve just told these people the truth. I didn’t cut my hair; it fell out. And when it finally grew back, it was curly. Because of chemo. Because I had cancer.

But like I’ve said before, that’s a giant turd to drop on someone. It stops the conversation. It changes the tone. It makes people feel…awkward.

Just like I’ve learned to talk around my dead mom when new people ask about my family, I’m learning to talk around my cancer. Not out of shame or anything like that, but just to make things easier. When things have been so hard, a little ease is worth any internal awkwardness I may feel.

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.

 

 

 

 

 

 

 

 

 

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.

 

An Ounce of Prevention

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In what has started to feel like a regular occurrence for me, I’m preparing for another surgery this week.

This time, I’m going under the knife for an oophorectomy, which sounds completely made-up but is the medical term for removing the ovaries. My fallopian tubes will be removed, as well.

Because of my BRCA2-positive status, I am at a higher risk of developing ovarian cancer. And ovarian cancers often spread and even sometimes start in the tubes. So, they all have to go.

The procedure will be done laparoscopically, which I’m told makes it much easier. My OB/GYN, who will perform the surgery, assures me it’s a very standard procedure.

I have mixed emotions about it. On the one hand, I’m just ready to get it over with. I’m ready to have one less body part to worry about possibly sprouting cancer.

On the other hand, I’m completely freaked out. Not really about the procedure itself, but more of the what-ifs. My greatest fear is waking up to somber faces telling me they found something abnormal. A tumor. Weird cells. More cancer.

I’m also feeling a bit sad about what this procedure means for me. I was done having children, but once this operation is finished, there is no possible way I could ever change my mind on that. There’s a finality to it that hurts a bit.

On top of that, my doctor warned me that I will pretty much go into menopause immediately after the surgery. I’ve been in a chemo-induced sort-of menopause for months now, so I’m hoping the side effects won’t be too bad. Mentally, this is another one I’m having a bit of a hard time with because I shouldn’t have to be dealing with this now. I’m too young. It’s too soon.

Last night I had two dreams about the surgery. There was the standard stress dream of not being in the right place, not being able to dial the numbers to call and let them know, etc. Then I dreamed that I was going in not to just have my ovaries removed, but to have gender reassignment surgery to transition me to becoming a man. I’d already had my breasts shaped into the most incredible set of pecs I’ve ever seen, and I was sporting a short brown hairdo. Hoo-boy, chew on that one, Mr. Freud.

While I have no control over the completely bananas world of my dreaming subconscious, I’m trying to keep the pity parties to a minimum. Yes, all of this is incredibly crappy and unfair. But, I’m also really lucky. I have the chance to possibly prevent another bout of cancer, to possibly save my life. For that,  I am truly thankful.

 

 

 

 

 

Adventures in Hair Growing

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I’ve always had a lot of hair.

As a kid, I would suffer through sob-inducing post-bath de-tangling sessions with my mom, her hands nearly cramping from raking a comb through my long, matted hair.

In my 20s, I went to a stylist who called over some of her coworkers to show them exactly how much hair was on my head–circus freak-style. And my poor current stylist would sometimes have to take breaks while coloring, cutting and styling my hair during the waning months of her first pregnancy.

Of course, all that changed with chemo.

But here’s the good news (besides that clean path report): My hair is growing back!

And boy, is it growing back weird.

In Cancerland (that sounds like the world’s worst theme park, doesn’t it?), they call the situation I’ve got going on “chemo curls.” My hair is about an inch long, and in the back especially, it is curly. Really curly. Shirley Temple with a Richard Simmons perm curly.

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This really doesn’t even begin to capture the ringlet action I have going on back there.

Apparently, this is another fun side effect of the chemo. A friend who’s much smarter than me when it comes to matters of science explained that the chemo curls happen because even though it’s been months since I’ve had a treatment, the lingering effects of the drugs remain in my system. That’s kind of crazy to think about. That’s also why after six months to a year, the hair starts growing back as it normally would (in my case, not curly).

In the meantime, I have no clue what to do with this mess on my head. I’ve tried all manner of taming methods–texturizers, headbands, etc. I’ve also played around with the color a bit. For a while, I thought I might like to be a redhead. Then I realized, nope, what I really want is to be blonde again. It’s weird, but even though my blonde comes out of a bottle, it makes me feel more like me.

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Like a sexy Medusa robot

So, I went to the salon a couple weeks ago to get some highlights. I was amazed that the stylist was able to put my short, kinky strands in foils. That is some next-level styling, right there.

The result isn’t exactly where I was before, but a step in the right direction to looking more like the me I see in my mind’s eye.

That’s the thing about this whole losing my hair process–in my mind, it never really happened. When I imagine in my mind’s eye how I look, I look as I always have with long, blonde hair. It is truly jarring sometimes to catch a glimpse of my reflection and see how I really look.

I get lots of compliments on my short hair. A lot of the time, I think people are just being nice because they feel sorry for me having gone through this shit. Sometimes the compliments come from strangers, though, so I think they might be genuine. Regardless, while I appreciate being told I look “cool” or “sassy” or whatever, I can’t really love this hair. While I’m very grateful to have it at all, the current state of my tresses is just a constant reminder that something really bad happened. And something really bad could happen again.

So, I’ll let it keep growing. And hopefully I’ll figure out a way to grow with it.