You’ve Come a Long Way, Baby

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A former colleague of mine recently got the terrible news that she has breast cancer. I’ve followed along as she shared her experiences on social media, and my heart has really ached for her this past week as she underwent a bilateral mastectomy.

Two years ago today, I was in that same position.

I remember lying in my hospital bed that night after my surgery, suffering the most intense pain I’d ever experienced, when I noticed something. The whiteboard bearing my nurse’s name and call number also held one more important bit of information: the date. November 28.

I stared at the numbers, and then I began thinking about my recovery in those terms. On the 29th I’d be a little better–maybe I’d get to go home. On the 30th I’d be a little better. And so on.

Having cancer and going through treatment really makes you slow down and take things one day at a time. That’s not easy for most of us, and honestly, it was one of the things I struggled with the most during my ordeal. But once I finally surrendered to the rhythm of cancer treatment, learning to take each day as it comes and not think too far ahead, I found the whole experience to be far more palatable.

Looking back, it’s almost unbelievable to me that each of those days have accumulated into two years. I remember when I was first diagnosed being told that treatment would be a process, but it also would be just a season in my life (providing it went well and worked, which thankfully it did). At the time, that was hard to imagine, but in retrospect, it’s true.

Yes, I definitely still deal with the after-effects of my diagnosis and treatment. Many things, like the fear and anxiety, will probably never go away. But life on the other side of this is still good. I know my former colleague still has a good bit of road ahead of her, but when I think about her (or anyone in this position), I just wish them to get to this point. It’s so hard to visualize life without chemo and surgeries and radiation when you’re in the thick of it, but it will come.

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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.

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Another Milestone

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

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

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

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

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

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

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

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

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

 

Thankful

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.

Couch Life

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Earlier this year, my husband and I bought new living room furniture.

We didn’t intend to make such a large purchase–we were initially just looking for an oversized chair to replace a lumpy sofa that had long outstayed its welcome. We went to a local furniture store that I love and found the perfect chair in a display right inside the front door. At first, we were only going to purchase that one piece, but it also had a matching sofa and the deal was just too good to pass up.

As the salesperson gave us the pitch on the set, she showed us that both the chair and couch were actually recliners. The couch has a dual-electric recliner feature. We weren’t in the market for recliners, but we liked the look and feel of the furniture so much that we decided to pull the trigger any way.

This past week, I have been SO thankful we purchased this furniture, particularly the couch. It has been my home for the past seven days, since it’s pretty much impossible for me to get in and out of our bed. With a pull of a lever, the electric mechanism sits me right up, or reclines me into a relaxed position. For someone whose arms and torso are extremely sore, this is pure magic.

I’m just over a week post-op now. I’m still really sore, and these drains are still driving me nuts. Each day is a little better, but I’ve still got a long road before I feel halfway normal again.

I had my first post-op appointment with my plastic surgeon yesterday. She looked at my mangled chest and said everything looked good (relatively speaking), and she celebrated my clear path report with me. She also gave me the terrible news that I’m not getting to ditch these drains until the end of the month (long sigh).

The day before yesterday, we went to my in-laws’ house to see my son. He’s been staying with family since my surgery to give me some time to recover. This is the longest I’ve ever been away from him, so it was a pretty emotional visit for me. I cried when he walked in. I cried when he gingerly hugged me, trying to be gentle to keep from hurting “mommy’s boo-boo.” I cried half the way home (we left him there for a couple more days to give me more time to recover).

But, he’s coming home tomorrow. I am over the moon! I have had moments of excruciating physical pain with this surgery, but nothing compares to the emotional pain of being away from my child.

This time tomorrow, I’ll have company on my couch, and I cannot wait.

 

Recovery

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Hospital fashion is seriously hot.

So, I am officially post-op.

And all things considered, I’m doing pretty well. I came home yesterday after a two-night stay in the hospital. I had a fainting spell that gave everyone a little scare in the hospital, so they decided to keep me an extra night.

The pain has been intense, but manageable. I’m mostly horizontal, but have been up and walking since the evening of surgery, and my mobility has improved each day.

The drains are gross, but not nearly as bad as I expected.

I took my first real shower today and looked at my chest for the first time since the operation. I didn’t know what to expect, and it wasn’t easy to see what I look like right now. But, as Rodney reminded me, this is temporary and I won’t always look like this.

So, all of that is great, but here’s the best news: my pathology report was all clear. The tissue from both my breasts and my lymph nodes were cancer-free. I know, way to bury the lead!

I could literally hear the smile on my surgeon’s face when he called me with the news. The chemo completely eradicated what was there, and nothing new had formed. He told me this is not only good news for the short-term, but for my long-term prognosis, as well.

As I told family and friends the news, so many of them exclaimed that I beat cancer. And I guess I did in a way, but I don’t feel like I can ever totally feel like I beat it. That may change, but the fear of recurrence is still far too real for me to be so boastful. I feel like I’m jinxing myself or something.

So, I will enjoy this victory and keep moving forward in recovery. Thanks to all who’ve sent good thoughts and prayers my way–they make a difference!

Goodbye, Girls

 

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I was in 4th grade the year I got my first training bra.

I scarcely had anything to fill it, but all my friends were getting them, and when you’re on the verge of becoming a teenager (I believe it’s called  a “tween” nowadays) and your friends are doing something, you just have to do it, too.

So, one Saturday my mom took me to Sears (lingerie and lawnmowers–talk about your one-stop shop!) to pick out a training bra. I perused the rack of simple white numbers, settling on one with a dainty blue flower applique on the front.

That Monday I wore my new bra to school. No one knew I was wearing it–save my girlfriends to whom I excitedly flashed the straps on my shoulders to prove I finally had it–but I knew it was there, and it made me feel so grown-up.

Tomorrow I’m bidding adieu to my “girls,” or at least, to them in their natural state. I am nervous. I am sad. I am angry.

I’ve never been the type of gal to be all wrapped up in her ladies, so to speak. They don’t define my identity as a woman, or how I feel about my appearance. But they are a part of me. They fill out my clothes (and I am way into clothes). They nourished my child. And they also tried to kill me.

So they must go.

I started crying in the car tonight on the way home after dropping my son at his grandparents’ house, where he’ll stay this week while I recover. Through my tears, I told my husband how much this all sucks. Yes, I am very lucky in so many respects. It could all be so much worse. But, still–it fucking sucks. I cannot believe sometimes that this is my life. This is really happening. I keep thinking I’m going to wake up and this will all have just been a really terrible, vivid dream. It just can’t be real.

I’m sure it will feel very real tomorrow. People who’ve been through this surgery assure me it’s not as bad as you’d expect, and that it’s easier than chemo. I can’t imagine how that could be possible. I mean, chemo sucks pretty hard, too, but there aren’t drains (ugh), and I could still hold my son even when I felt like garbage.

But for now, I’m saying goodbye. I’ll miss the girls as they once were, but I’m hoping they’ll cause me less trouble from here on out.

Mastectomy, Simple, Complete

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Yesterday I met with my surgeon to discuss my upcoming bilateral mastectomy and lymph node removal/biopsy. I now have a surgery date, and it’s very soon.

When I got home last night, a notice from my insurance company awaited me, informing me my surgery had been approved. In the section with the coding for the procedures, it said: “Mastectomy, simple, complete.”

While it will be complete, nothing about this is simple.

When I received my diagnosis back in July, I immediately feared I’d need a mastectomy. I’d run through all the scenarios in my mind by the time my doctors told me a much less invasive lumpectomy would be just as effective. Cue the relief.

Of course, that was before I found out my BRCA2-positive status. That changed everything.

Now I’m facing a bilateral (double) mastectomy, along with the removal of some of the lymph nodes in my left armpit (the side where my cancer occurred). Those nodes will be checked for cancer cells.

I’ve opted for a nipple-sparing procedure with reconstruction. This basically means that all the tissue inside (which reaches up nearly to my collar bone and around the sides of my chest) will be removed. Then, the plastic surgeon will insert expanders, which are essentially deflated implants that will be injected with fluid over a period of weeks to allow my skin to heal and prepare for the insertion of the permanent implants.

My surgeon said the recovery process will last 3-4 weeks. And several of those weeks I’ll have drains on either side of my chest to remove fluid that builds up in the space between my healing skin and the expanders. I’ll have to empty these daily. Blech.

Obviously, my mobility will be seriously affected during recovery, and I won’t be able to drive for at least two weeks after. I guess I’ll finally have a chance to catch up on all those Netflix shows I’ve been meaning to watch.

The pain, lack of mobility and even the disgusting drains (have I mentioned how gross they are to me?) aren’t what I’m most worried about, though. Per usual, my son is my biggest concern.

I won’t be able to lift much of anything during recovery, which means picking him up is a no-no. This is problematic because my son is very attached to me. I pick him up multiple times a day. And on top of that, he’s constantly in my lap, falls asleep on my chest and ends up in bed with me most nights. All of that will have to change. Like the end of breastfeeding, I know this is going to be a fairly difficult adjustment for him. He won’t understand. He will cry. And I probably will, too.

So, yes, this mastectomy will be complete. But it is far from simple.

A Change of Plans

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I haven’t updated my treatment status in a while, and that’s mostly because it’s been sort of in flux the past month.

As I mentioned a few posts back, I got really sick right after starting Taxol. This was the drug that was supposed to be “a piece of cake” compared to my first round of chemo with the Adriamycin/Cytoxin cocktail.

Of course, I’d be the special snowflake that proves that wrong.

Three weeks after that first dose, and after finally having my two-week fever and headache subside, I went in for treatment only to find out my white blood cell count was still incredibly low. This is not normal for this drug.

So, my oncologist came in to tell me that I obviously cannot tolerate Taxol (and it was the source of my fever and other problems), and they are very hesitant to continue giving it to me because if it hits my immune system this hard (counts still low three full weeks after treatment), then it could cause damage to my bone marrow.

I already had an appointment with my surgeon scheduled for the following Monday, so my oncologist ordered a rush MRI for that day so the results would be ready for my surgery appointment. So, for the second time that week, I climbed into the ol’ MRI tube, this time to scan my chest (at least they gave me headphones and let me listen to Pandora this time around–’80s pop music helps make the MRI go by a lot faster).

That Monday, my surgeon shared the results. My tumors were pretty much undetectable, and the right side was totally clear. The only thing he noticed was a tiny mass on the left side that he said looked benign. It will get removed during surgery.

That was a week ago, and now we’re just waiting for my immune system to get back on track to schedule my surgery, which could happen as soon as this month or next month. Does that kind of throw a wrench into the holidays? Yes. But, I am happy to get it over with a bit sooner, and I’m even happier to hopefully be done with chemo. (Although, if there is cancer in the pathology report from the tissue they remove during surgery, they may order more chemo.)

I asked my oncologist’s PA what discontinuing chemo (I still had 11 doses of Taxol scheduled) means for my treatment. She told me that Taxol gives me a 3% better chance of the cancer not recurring. While it sucks to lose that, saving my bone marrow is more important at this point. She also told me that the anti-estrogen meds I’ll be on for the next 5-10 years (my cancer is estrogen receptive, which basically means that estrogen feeds it) increase my chances of it not recurring by 50%, so that made me feel a little better.

So, that’s where we are right now. I’m still sort of in limbo as far as when the next steps happen, but I know they’ll come soon. In the meantime, I’m trying to mentally prepare myself for surgery and all that comes with it. Everyone tells me it’s not as bad as chemo, but I just don’t know.