Moving On

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The year that launched a thousand memes, 2016, was pretty shitty for a lot of people. And thankfully, that sumbitch is over.

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This year was a time of sorrow and loss for so many people. All the celebrity deaths aside (and holy hell, were there a LOT of them!), I know so many people who lost loved ones this year. My husband’s uncle passed in February, I have two friends who lost parents, another who lost her sister, some who lost unborn children to miscarriage, one who lost her cousin/best friend (who also happened to be my high school classmate)…the list goes on and on. And those aren’t the only losses–I have friends who lost jobs, promotions, etc.

On top of all that, there’s been plenty of chaos and strife, from terror attacks, to the instability of Brexit, to the Syrian crisis, to the utter shit show that was the 2016 U.S. election.

Obviously, this was a tough year for me personally, as well. Being diagnosed with cancer, learning I have a genetic mutation that makes me predisposed to cancer, going through chemotherapy and then a bilateral mastectomy was one of the hardest things I’ve dealt with in my life. I have never felt such physical and emotional pain. I have faced the terror and sadness of my own mortality.

My family has suffered, too. My poor husband has stood by me through this whole ordeal, a steadfast rock who held my hand as I cried during my first doctor’s appointment, shaved my head when clumps of hair fell out during chemo and changed my disgusting drains after surgery. And he has done all of this without complaint. I know it’s been hard on him, and I am thankful every single day that I married such an incredible person.

And with him, I’m thankful I married into such an incredible family. His family has been there for us in so many ways, from taking care of my son when I was recovering from chemo or surgery to filling my mailbox/inbox with cards and messages of love and encouragement to just being there to provide a hug or smile when I needed it.

My own family has been amazing, too. My sisters have been a constant source of support, and my dad has been so sweet and concerned–seeing his child face this has been hard for him. And my vast extended family has wrapped me in love and support, too.

My amazing family hasn’t been the only group cheering me on through this crapfest of a year. My friends–best friends I’ve known since childhood, newer friends who’ve become an important part of my life, a group of fellow moms who’ve become a huge part of my support system, former coworkers and even folks I haven’t seen or talked to in years–have shown me so much concern and love.

And my current coworkers–two of whom were literally by my side the day I got the bad news about my diagnosis–have been so wonderful. My absences due to chemo and surgery have been hard on them, but they’ve handled it like champs and never made me feel like I was letting them down. And the company I work for has blown me away over and over again with their capacity for kindness and generosity. I thank my lucky stars every day to be part of such a fantastic organization.

This year has been SO incredibly hard. It has tested and challenged me in ways I’ve never experienced. It has broken my heart on so many occasions. But it also has taught me how much love, kindness and good there is in the world. I am so grateful for every single gesture I’ve received this year, from loved ones and strangers alike. They have made this journey a little more tolerable and they have taught me that even when things are dark, there is still light in the world.

It’s that spirit that I’m taking with me into 2017. I still have some challenges ahead of me and a couple surgeries yet to complete, but I know that this year is going to be better. I can just feel it. I’ve always seen the new year as a chance to refresh and start over, but never before has that feeling been as strong as it is this year. I am ready for 2017, and I’m going to do my best to make it a great year.

I wish you all joy and good health in 2017. It won’t be a perfect year, but I am hopeful it will be much better than what we’ve just finished.

 

 

 

 

Why am I Still Crying?

 

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I don’t know what’s right and what’s real anymore
I don’t know how I’m meant to feel anymore
When do you think it will all become clear
And I’ll be taken over by the fear
-Lily Allen, “The Fear”

Today I had a followup appointment with my surgeon. The meeting went well–he said everything was healing up nicely and he went over my pathology report again, reiterating what great news it contained. All in all, pretty darn good.

So, why did I spend half the drive home crying?

I should be really happy right now. Yes, I’m still in some pretty wicked pain, and my chest is a hot mess, but that will all eventually change. I’m “cancer-free;” I should be ecstatic, right? I certainly shouldn’t be boo-hooing in the car.

And yet, here I am. My emotions are all over the place. I don’t know how I’m supposed to go from being the cancer patient back to a regular person. I’m too afraid of recurrence to let my guard down. And every time I catch a glimpse of my reflection in a mirror, I’m taken aback–the mind’s eye vision of myself doesn’t fit how I actually look with my barely-there growing-in hair, pale skin and flat chest.

And even nuttier, I’m actually kind of sad that my time with my doctors is starting to wind down. I’ve grown kind of attached to these people, having seen them so much the past few months. Not to mention the fact that they literally saved my life.

I’ve heard people say that the treatment of cancer is hard, but figuring out life after treatment can be just as difficult. I always used to think that sounded kind of weird, but now I’m starting to understand what they were saying.

I don’t know how to proceed. I’m not sure how to process all of this. I don’t know how to be me anymore.

There’s a flyer in my oncologist’s office called “Finding Your New Normal.” I guess that’s what I have to do now. I won’t ever be able to go back to the old me.

 

 

What Not to Say to a Cancer Patient

I’ve had a lot of time to sit around and think since my surgery. And one of the things that I ponder is all the stupid things I used to say and think about cancer.

Like most people lucky enough not to have personally dealt with the disease, I didn’t really understand how it worked. I’m still no expert, but I know a great deal more now than I once did. That knowledge makes me cringe at some of the things I used to think and say.

Outside my own transgressions, I’ve had a lot of well-meaning people say some pretty ridiculous things to me. I know it comes from a good place, and I also know that most people struggle with finding the right thing to say to someone with cancer. They want to help. But some of the things they say are pretty unhelpful. And some are downright rude and/or hurtful.

Here are some of the worst/most common things people have said to me that I would advise people to avoid when interacting with people battling cancer:

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“You know eating/drinking meat/sugar/alcohol/etc., causes cancer.”
During my first appointment following my diagnosis, I met with a nutritionist who gave me a list of food-related cancer myths. What she told me was this: Yes, eating a plant-based diet with lean protein is best for cancer patients. But, it’s best for everyone, and it has nothing to do with cancer. There is just not enough research definitively linking any food/drink to cancer. Yes, there have been studies that have mentioned certain foods could cause an increased risk, but these findings are not widespread enough to officially draw a direct causal link to cancer.

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“You know your deodorant/lotion/makeup/soap causes cancer.”
No. Just no. This is even worse than the food one. There is no solid medical evidence linking any personal grooming products such as deodorant to cancer. Most of the time, you’ll hear these claims made by people/companies peddling “natural” body products, which, to me, is disgusting. To use the fear of cancer as a marketing ploy is really beyond the pale. My deodorant did not cause my cancer. My genetics did.

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“There’s a cure for cancer, but the government/pharmaceutical companies won’t ever allow it to be discovered/used because they would lose too much money.”
I must admit, I’m guilty of saying this one in the past. And of all the wrong things people say, this one sticks in my craw the most now. The truth is, there is no one cure for cancer. There aren’t five cures for cancer. Because cancer is an incredibly complex disease. Even within one type–breast cancer, for instance–there are so many different variations that change the way it’s treated, the way it grows and whether or not the patient survives. For example, breast cancer patients can have one of two different types of gene mutation that can cause their disease (BRCA1 and BRCA2), or they might not have the mutation at all. Their cancer could be estrogen receptive, progesterone receptive or HER2 positive. Or it could be a triple negative or any combination of the three. There are so many variables that finding a “cure” that address all of them all is damn-near impossible.
On top of all that, this kind of statement spits in the face of all the intelligent, dedicated people out there in the medical industry fighting cancer every day. People like my wonderful oncologist, who not only has a professional stake in this battle with his years of medical training and experience, but also a personal stake since his own wife is a breast cancer survivor. If there was a cure, he would be the first one doling it out.

There are so many things you can say to a cancer patient. “I’m here for you.” “I hope you’re feeling good.” “I love you.” If you want to be helpful, offer to make food or do chores. But unless your friend or loved one asks, don’t offer your medical advice. Because trust me, they probably don’t want to hear it.

And if you’d like to learn more about the disease from a factual, research-based source, I highly recommend visiting the American Cancer Society website.

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.

Winks from God

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The other day, my son and I stopped into Starbucks for a little treat. As we settled in at a table outside, a woman seated near us walked over and asked me how I was doing.

This might seem a bit odd since I didn’t know her, but I was just wearing a ball cap that day (as I do most weekends), so it was clear I’d lost my hair. I knew she could easily see that I’d been through chemo.

I told her how treatment was going, and she offered some words of encouragement. Then I asked her if she’d been through this, and she admitted that she was a breast cancer survivor, as well, and told me her story.

This isn’t the first time this has happened. Since I started treatment and lost my hair, I’ve had several complete strangers approach me in public with words of encouragement. And these strangers were all survivors themselves.

A few weeks ago a woman (also a survivor) came up to me in a restaurant and told me to keep up the fight. And on the day before my brain MRI, a woman (another survivor) in the drug store told me I was going to be OK–a message I desperately needed to hear that day.

As I thanked the lady at Starbucks for coming over to talk, I told her this keeps happening to me. She just smiled and said, “Yes, it happened to me, too. I call them winks from God.”

I love that. And I also love that there’s this inherent sisterhood among women who’ve faced this nasty disease. It’s as if we have a sixth sense about one another, and can spot a sister from a mile away. And what’s even cooler is we’re not afraid to reach out and offer love and support, even to someone we don’t know.

I’ve decided that once I get to the other side of this, I will do the same for other women I encounter. Being someone else’s wink from God is the least I can do.

The Ones Who Came Before Me

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I’m a member of a Facebook group for women with breast cancer, and yesterday one of the women posted a gratitude thread. There were all the usual sentiments–gratitude for family, friends, the group itself, etc.–but one really struck me. I’m paraphrasing, but she said she was thankful for all the women who came before us; the ones who did the clinical trials that led to the drugs that fight our cancer, the ones who allowed doctors and researchers to discover new breakthroughs, the ones who survived and give us hope, and the ones who didn’t, reminding everyone how serious this disease is.

Her comment reminded me of the above photo, which I took last week while working the High Point Market (a big bi-annual furniture trade show here in NC, for the uninitiated).

I was taking a quick lunch break when I noticed the huge pink firetruck parked near a group of food trucks. After getting my food, I found a seat next to the truck to enjoy my meal. Sitting alone on that bench, I started reading all the messages written on the truck. There were so many–it was almost completely covered!

The more I read, the more emotional I got. There were so many in memory of someone lost–mothers, grandmothers, sisters, aunts, wives, friends. We all know that cancer can kill us. This is an undeniable fact. But, in the interest of self-preservation and not going completely mad with fear and anxiety, I try to push that fact out of my mind as much as possible.

Seeing those names reminded me the disease I’m fighting takes women just like me all the time. In the middle of Pinktober, it was both a scary and good reminder–breast cancer is not all pink ribbons and festive charity walks. It’s a real, deadly disease. It ravages bodies. It decimates finances. It breaks up families. The lucky ones–the survivors–bear the scars and carry an unseen fear (will it return?) with them forever. The others lose it all.

But those weren’t the only names I read. I also saw the survivors. The ones who wrote how many years they’d been cancer-free. The ones who left uplifting messages reminding us to keep up the fight. The survivors keep me going.

So like my fellow group member, I also would like to thank the ones who came before us. No matter the outcome, their experiences made a difference and I am thankful for those courageous women.

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.