Another Milestone

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

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

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

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

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

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

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

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

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

 

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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.

 

Notes from the OR

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Pre-op fashion

Yesterday’s oophorectomy went well. My doctor didn’t see anything that looked weird (huge sigh of relief), and the procedure was pretty uneventful. I was home by around lunchtime.

My torso scar collection has grown by three, although these are pretty small (and let’s be honest, my bikini days are over anyway). I’m sore, but it’s not unmanageable–much less pain than my c-section or mastectomy.

I’m not going to lie, it was a little sad to take a pregnancy test (standard procedure) and then sign a form confirming that I realized going through this procedure meant I wouldn’t be able to have any more children. It’s weird because even though we’d already made the decision to only have one child, the finality of all this still feels like a loss.

But what I’m gaining–some additional peace of mind–is worth it. At the end of the day, I have to remember that it’s not about mourning children that won’t be, but celebrating the gift of time with the precious child I do have.

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.

 

 

 

 

 

Recovery, Part Deux

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Very early yesterday morning, Rodney and I went to the day surgery center for my exchange procedure. After a short wait, the staff ushered me back to one of the staging rooms for all the pre-surgery prep. That includes donning some really sexy hospital shorts (which I’m grateful for since they kept me from flashing people as I walked down the hall in my gown) and getting my chest marked up by my plastic surgeon.

After getting hooked up to an IV, the very kind anesthesiology nurse walked me to the operating room–a very bright, cold place. After meeting all the nurses assisting my plastic surgeon, I climbed up onto the narrow table and a few minutes later I was out like a light.

I woke up a few hours later in the recovery room. The surgery went really well–so well, in fact, that my surgeon decided I wouldn’t need drains this time around.

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I’m pretty sore–both my chest and stomach since she did some fat grafting–but nothing like my previous surgery. I’m staying in bed mostly, but I’ve been up and moving around since I left the hospital–I even walked out of the hospital to the car. So far, this recovery is much easier, which is really nice.

Thanks to everyone who’s checked in on me–if you need me, I’ll be enjoying some Hulu in bed (you know Golden Girls is on binge mode here!).

Here We Go Again

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I’m going under the knife again.

Tomorrow morning I’m heading over to the day surgery center bright and early for my exchange operation. This is the procedure where my temporary tissue expanders are removed and replaced with the permanent* implants.

I will also have fat grafting done from my belly to help fill out my chest and make it look more normal since the implants and muscle can’t exactly replace all the tissue that was removed. Much of my adult life I’ve joked that I wanted to suck the fat from my belly and put it into my boobs–who knew all it would take was a little cancer to make it happen?! (Sorry, I’m really into the morbid jokes these days.)

I’m going to have the blasted drains again (UGH), but hopefully  I won’t have to keep them as long this time. My recovery is supposed to be much shorter, too.

I posted a question about the surgery today in a Facebook breast cancer support group I participate in, and one of the members told me this was a step toward getting back to my old self. I really hope she’s right, because my body feels very not-like me right now. The tissue expanders are uncomfortable–they feel sort of like wearing a bra that doesn’t fit quite right all day. And then there’s this concave situation I have going on in the middle of my chest that’s kind of a mess. I know that I’ll never look or feel exactly like I did before, but if I can get close, that’s good enough.

 

 

 

 

 

How It All Began

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When I gave birth, one of the things that was really important to me was to take a few minutes of free time (precious stuff with a newborn) to write down my son’s birth story. I wanted to record how it happened not only for him, but for myself as well, before I forgot it.

When I first started this blog, I was so shell-shocked from my diagnosis and the ensuing whirlwind of doctor’s appointments and treatments that I sort of glossed over the full story of how it all happened. And like that birth story, I want to record how it all went down. Right now I feel like I’ll never forget it, but as I’ve learned, time tends to blur memories and things can get fuzzy enough to disappear completely from your mind.

I also wanted to write this post in the event that some newly-diagnosed person or person with a suspicious lump happens upon this blog in their internet searching (I know I ended up reading a lot of blogs that way). I was hungry for information, but even more so, hungry for the experiences of others. I wanted to hear the good and the bad–I wanted to be prepared either way–but mostly the good, as I was looking for some hope to go along with my cold, hard facts.

So, in that spirit, here is my cancer diagnosis story (it’s long–sorry):

I don’t remember the exact day I noticed the lump, but I remember being aware of it around June of 2016. I’d love to say I was one of those conscientious people who did regular self-exams, but that’s not true. I noticed it in part because I was still breast feeding and more aware of my breasts in general, but also because it was pretty prominent–a hard little lump along the outer side near my armpit.

I honestly thought it was some kind of clog associated with breast feeding, or maybe a cyst. I remember thinking it felt different, so I decided to go to my OB-GYN to get it checked out.

I finally got around to doing that the week after July 4th, and the PA who felt me up that day said she thought it was probably nothing, but sent me to the breast center just in case. I was still oddly calm and sure it would just be some kind of benign thing.

At the breast center, they brought me in for an ultrasound. I’d had several ultrasounds before when I was pregnant, and I loved them. Seeing my baby moving around inside my body was one of the most amazing things I’d ever experienced (even if I needed help seeing him sometimes–those ultrasounds aren’t the clearest things!).

This was far less fun. As I laid on my side, the radiologist pressed the ultrasound wand against the side of my breast, pointing to the image on the screen.

“So, here is the lump,” he explained in a very calm, even tone. “Notice how it has jagged edges. And these little white spots here are micro-calcifications.”

I nodded and didn’t say much. I had no clue what any of it meant. Had I done any research beforehand, I probably would have lost my shit right then and there. Jagged edges and micro-calcifications are both signs of cancer.

When he was finished, he told me it looked suspicious, and they wanted to do a mammogram and a biopsy. Amazingly, there was an opening for the biopsy that afternoon, but the nurse told me I had some time before that appointment, so I should go get something to eat.

Oh yeah, food. I’d completely forgotten about lunch. Of course, I had zero appetite, because the impending biopsy completely freaked me out. I stumbled out into the blazing sun and somehow made it to my car. And then I promptly collapsed into a sobbing mess.

I somehow pulled it together enough to drive to a convenience store and buy a Cheerwine (nothing comforts me like my favorite sugary drink), and then I called Rodney, crying, and told him everything.

I dried my tears, finished my soda and staggered in a daze back up to the breast center. The mammogram was first. Being only 37 with no family history of breast cancer, I’d never had one. And I’m here to tell you the rumors are true–they’re no fun.

After that, I was taken to a small examining room for the biopsy. Continuing the theme of the day, this also was zero fun. I laid on my side and got a shot of local anesthesia. It always takes more than one shot for me (so tough!), but once I was sufficiently numb, the radiologist went to work. I could feel the pressure of the needle going into my body, and then the pulling as the device clicked and sucked out bits of tissue from the tumor.

The biopsy was done in a few minutes, and they sent me on my merry way to wait for the results. Of course, it was my luck that this all went down not only on a Friday–meaning I’d have the whole weekend to agonize–but also the Friday before I was to fly to Chicago for a Monday business trip. I spent most of the weekend consulting Dr. Google, who all but confirmed my fears that this was no ordinary benign occurrence.

As you may have read in one of my first posts, I got the news while on a layover in the Atlanta airport. Yeah, that sucked.

I had my first appointment at the cancer center the following week. I’d had some long doctor’s appointments before, but nothing like the four-hour marathon that is the first cancer consultation. On the one hand, it’s nice that they could assemble my team (it never failed to freak me out that I needed a full team to treat me) at one time instead of making me return for half-a-dozen individual appointments. But on the other, such an appointment makes for a pretty grueling morning.

My oncologist was the first doctor to visit with me and Rodney. After introducing himself, he informed me that I had been the subject of a weekly meeting of the area’s breast cancer doctors. Knowing you need a team is one thing; finding out your case was the talk of all the doctors in the area? Absolutely fucking terrifying. I was sure I was about to die.

Turns out, I was of interest because of my age and relative good health. My oncologist went on to tell me my stage (Stage II A) based on the fact that my tumor was around 2.5 cm and had not spread to my lymph nodes (that they could tell). He also told me that it was estrogen- and progesterone-positive (which means those two hormones essentially feed the cancer) and that it was HER2-negative (a protein that can be over-expressed in tumors). The growth rate was at 50%–fairly high, but not “NASCAR speed,” as my oncologist put it.

After telling me all that, he outlined my treatment plan (which changed due to my BRCA2-positive status), and answered the litany of questions Rodney and I had. The rest of the appointment is kind of a blur to me now. I saw my surgeon, the radiation oncologist (whom I never ended up seeing for treatment), nurses, a dietitian, a physical therapist–like I said, it was kind of grueling.

It’s crazy to me to think that day was almost seven months ago. I’ve had chemo, surgery, several MRIs and more doctor’s appointments than I can count since then. I’ve lost my hair and grown it back (well, it’s in process). And best of all, I’ve had a clean pathology report. I’m still not finished with this journey, but man, I’ve come a long way from the beginning.

 

 

 

 

 

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.